Hi. I'm confused and lightheaded and will try to make this concise, thank you!
On 5/14 my A.M. and P.M. serum cortisol both came up at 0.5mcg/dl. My GP started me on hydrocortisone while I waited to see an endocrinologist. GP said straight up that he has no idea how to treat adrenal stuff or dose hydrocortisone.
mid March: unusually thirsty and lightheaded
3/18: shortness of breath getting bad
4/1: headaches, trouble concentrating, forming proper sentences, feels like exercise every time I move
4/19: bad abdominal pain, upper left
4/26: lost about 10lbs by now (from 112lbs to 102)
5/2: gastric emptying study done, is fine
5/7: put on Megace for having lost 20lbs when I'd prefer to gain
5/13: urgent care for abdominal pain and fever
5/14: cortisol bloodwork done (0.5 at 8am and 4pm)
5/16: abdominal ultrasound done, comes back fine
5/17: start hydrocortisone, work up to 10mg BID
5/29: first endocrinologist appointment, no med changes or advice, orders tests
5/31: endo takes me off of hydrocortisone for labs, after 5 hours I'm in urgent care with BP in the 80s
6/1: AM cortisol and ACTH done, waited for letter
6/3: I call endo to see what I can do, because I've been in bed for weeks, and halfway there for months
6/4: get letter from endo saying:
"Your recent test results have abnormalities I expected. No action is needed. Please schedule regular appointments so I can monitor your medical conditions. Please continue with your same medication and dosage.
I called and made an appointment a few weeks out, because I still don't have a diagnosis or know what to do with hydrocortisone, and am still feeling confusion, dizziness, weakness, panic, headaches, and abdominal pain about 2 hours after every dose of hydrocortisone. It helps a TON for about two hours.
I got a call back from the endocrinologist himself, telling me he doesn't know why I want an appointment so bad and saying not to bother coming back in at all. My GP had said the ACTH stim test was the big one we were waiting for. I asked endo if we'd done it, he said it's not necessary, and I'd need to come off hydrocortisone for at least a month to do it anyway.
Can somebody at least give me advice on being less dizzy, confused, and cranky in between doses? I know nothing about what is wrong with me or what this medication does, and reading is getting really hard.
I am crabby and having abdominal pain, fogginess, and craving for salt and sugar. It's 1am and I'm tired, but grinding my teeth. I kind of wish I could take more hydrocortisone, because the pain always starts two hours after the last helped.
I did write 0.5, that's what AM and PM both came back as on 5/14. That was on 5mg of Prednisone from 5/1-5/7, so they redid the cortisol test after 9 days on hydrocortisone and 1 day off of it, just in case.
That second 8am serum cortisol test (5/31) came back at 2.7mcg, and I got to go back on the hydrocortisone after doing the test. (I thought I was going to die the night before after a few hours without the cortisone, that's why I went to urgent care.)
I have an appointment with my GP tomorrow but he doesn't know yet the endocrinologist canceled my appointment. GP already said he doesn't know what to do, so I guess tomorrow is about hoping there's another specialist in the area, or that someone else will help?
I've been feeling pretty sick. This lucid-ish moment brought to you by my 8am dose of hydrocortisone. Thank you!
Er, I was on 5mg Prednisone for a respiratory thing for a week, then off it for a week, then cortisol test #1, then 9 days of hydrocortisone, 1 day without, and then cortisol test #2. Then endo saying to just stay on hydrocortisone but not come back.
What time exactly were the tests done? Did they do sodium and potassium testing as well?
I would go find a doctor who DOES know what they are doing - 10mg is generally too low a replacement dose. One does 15mg on up - and you take the bulk in the morning with a small amount in the late afternoon (this is a guideline).
The doctor should not put you on hydrocortisone replacement dose without doing the proper testing - such as a stimulation test and the adrenal antibody test. You kinda want to know if you are primary (adrenal) or secondary (pituitary) to know if other issues may arise. ACTH can help determine that but the test is often not done correctly - for instance, the labs rarely use a chilled tube and the tech may put it in a bin and not the centrifuge immediately in which case the result is low just from lab handling and what your *real* level is - anyone's guess.
HC has a very short half life - which is a good thing as the side effects long term are then minimal (unless doses are too high) and testing can be done after a couple of days.
For a chronic disease such as this - you should have regular appointments. You would need regular refills - as well as an emergency kit (IM needle, solu-cortef acto-vial, etc) and a medic alert bracelet or the like - this is a serious illness with life-threatening implications so your doctor does not have the skills you need. Get copies of your records and find a good doctor.
The first tests (May 14) were done at 8am and 3pm, (0.5mcg both). The second (June 1) was just an AM and done around 8:30am, (2.7mcg). I've had lots of CBCs, my sodium and potassium are fine. My GP said he has no idea why they are so normal. (I can come back with specific levels/results later. The only other weird things were albumin/globulin ratios and eosinophil-something-something.)
Tomorrow I am going to ask my GP for another endocrinologist referral, I just hope I don't have to wait too long, because my life has been getting pretty hard to... live.
I've also had high and low temps, too slow/too fast GI problems, and oh god I'm like an idiot now. I guess I'll report back tomorrow with what GP says about other endos. Thanks for the input.
1. Follow Rumpled's advice, she helped me and she knows more on this matter than the rest of us combined. Her point on identifying just what type of issue you have: primary or secondary, is very important to establish.
2. You mention you had cortisol tests at 0830 and 300pm. It is better to have the second test closer to 6pm.
3. To get a more accurate reading you must be off the hydrocortisone for 2 days not one as you mention you did. And then do the AM and PM tests.
4. If your GP cannot refer you to an endo who knows what he is doing, then ask that GP to refer you to someone else, even if he/she is not convenient for you to get to. Many GP's have relationships with specialists in their area (the relationships may be either professional or personal). You however need ANSWERS to an intricate matter which means you will HAPPILY travel to see someone who knows the issue.
5. By the way, are you in Australia or the United Kingdom?
6. Are you drinking plenty of fluids? Easing off carbs and mostly eating protein?
The testing is a little difficult only because I'm limited to the lab's hours, so far as I know. I'm hoping/assuming that if I find a competent endo, this will be somehow more feasible.
Off the hydrocortisone for 2 days? Oh geez. Is there some kind of thing I'm supposed to do to.. feel like I'm going to be okay through that time? It was about 4 hours after the last dose before I knew something was pretty wrong. (BP, evidently?)
At the moment, I'm sort of learning to manage my symptoms for the 2 hours that I hate in between the 4-hour-spaced doses.. Again I'm hoping an actual doctor will answer these questions, when I get to see one.
I didn't get the impression that my GP has relationships with any endos in particular. He referred me to the guy who's supposed to be fanciest in the hospital-group of which he is a part. I've made a list of the other people my insurance says they cover, I'm hoping to figure out which is a decent one, and hopefully get an appointment soon..
Australia or the UK? USA, state of New Mexico.
I've *definitely* been drinking plenty of fluids. I hope I'm not drinking too many, I seem to be peeing constantly. I have not heard before about easing off of carbs or onto protein, I'll have to look it up later when I can read better.
Normally I'm pretty on top of my health stuff, but spending so much of my time so out-of-it and weak has really thrown me. I don't have this at ALL, and that endo dropped me like a hot potato for some reason I guess I shouldn't bother to figure out.
Thanks again. I'll write some of this down for GP tomorrow.
Oh, and of course I'll happily travel anywhere the insurance-taxi-thing is willing to take me. I think they do anything within the state, but I'm not sure. I'll have to find out. I'm not worried about the convenience of someone close or anything, I just need to make sure I can find someone who accepts my insurance..
I would do testing only off HC for a minimum of 24 hours... the more you can push it is better.
If you feel the urge to drink and then pee and then feel like you still need to drink - that can signal a pituitary issue - a water diabetes called diabetes insipidus - so I would see either an endo if you can find someone intelligent, or sometimes a kidney doc can make that call and get you on DDAVP.
I know I have waited to get into the *extra good doctor* only to find out that they were clueless - but named a top doc in a magazine. One patted me and told me I was absolutely fine - needed no endo, no thyroid meds (half my thyroid was gone at the time, I was hypothyroid, had hashimoto's and two more nodules, but needed nothing???) and even *supposed* pituitary issues were just in my head... I was furious. I ended up traveling to California!
Wow, a minimum of 24 hours? The endo's notes (seen on GP's screen) said that the stim test wasn't necessary, and he doubts he could get me to stop taking HC for "at least a month" in order to do it.
I saw my GP today. Endo's notes said adrenal insufficiency, stay on hydrocortisone, but that's all. Notes said that the remaining problems with headaches and abdominal pain are being caused by something else, and 3x/day HC should have me 100% normal if it was indeed the endo's concern. So by continuing to have symptoms while on HC, it left his jurisdiction?
I got a new referral and made an appointment with another endo, about a month from now. I'm on the cancellation list, so maybe that..
People keep mentioning travelling and making sure I get a good doctor, but I'm not sure if those options are available to me. I am on Medicaid, Supplemental Security Income, and I take the medi-taxi to my appointments, if that clarifies anything.
My GP said it sounded like my blood sugar might be doing crazy stuff, so he prescribed a blood glucose meter. I haven't picked it up yet, but I guess I'll start Googling what to DO with the thing..
You mentioned "GP" rather than the usual "PCP' (Primary Care Physician) so I thought you were not in the US.
Ok so you're in NM. Anywhere near Albuquerque? Have you tried the endos at University Hospital? I understand it is the best hospital in the state and would surely have decent endos on board, at least no worse than who you've been seeing.
If you have not tried them and they are not on your insurer's list I urge you to call them and ask what it would cost to see them.
Does your insurer allow you to see doctors say in California? If so then make a beeline for UCLA (Ronald Reagan Medical Center) in Los Angeles or UCSF Medical Center in San Francisco. Both have well regarded endo facilities.
The sooner you are under the care of someone competent, the sooner you'll get better. I should know. I spent a year with an idiot until most of what he said contradicted what I read in 2 medical texts and what he mostly recommended made me feel worse.
Until I found someone better.
One more thing. Just to hammer the point of being off the Hydrocortisonew for 2 days or so. Yes being off it makes you feel worse. I know. I have been there. BUT, testing you without being off it for say 2 days WILL give a false reading. The reading will measure your levels INCLUSIVE of the supplements you took and will WRONGLY show a better result than is the truth.
The stim test is THE test - so that endo is an endummy. It will be tough to find a good doc - but do keep trying. I agree with Low - the longer you are off for testing the better - in fact, most good docs will do testing then treat - imagine!
Hydrocortisone is not a medication one gives and just walks away from - so you need monitoring. The symptoms always stay - it is a permanent condition!
Good luck with the glucometer - the forum here may help as well.
I'm hoping the next endo will answer this a month from now, but in case the somehow isn't amenable to questions either..
"Yes being off it [HC] makes you feel worse. I know. I have been there. BUT, testing you without being off it for say 2 days WILL give a false reading."
How do you cope with the symptoms from being off HC it for that long? If it was like last time, I'd have to stay in bed after the 5 hour mark, but I also don't know how to fix which symptoms with what yet. (I'm still figuring out which is BP or blood sugar or what.)
Previous endo did say stim test could only be done if I was off HC "at least a month or two", I really hope this next guy says only 2 days.
You ask how I coped with stopping the hydrocortisone prior to a test. Let me tell you it wasn't easy. The first time I just stopped the meds which I took in one go once a day. A few months later (prior to the follow up test) I started taking the same amount of meds but in smaller dose more times a day. For instance say I was on 40mg a day, at first I took it all or most of it in the morning and then had 2 days without them before the test. But when I swapped to taking 20mg in the morning then 15mg at say 2pm then 5 mg at 5pm my body was more tolerant of the withdraw over the two days when it came to withdraw. I am not saying it was a walk in the park BUT certainly I felt better than I did after the first test. I checked with my neurosurgeon about this and he replied (and this was confirmed by many experts) that if a dose is say 40mg (or whatever) a day then breaking it up into more manageable lots - which in my case helped me cope with the adrenal insufficiency better - is certainly ok. The key is to maintain the total daily dose as asvised by the endo.
Also there is no need for many tests.
If you do a test correctly i.e. after 2 days of no meds, then WHATEVER your result, the next test should be say 3 mths away. If you're still in need of hydrocortisone then 3 months later is a good time to check your levels. If by some miracle your levels are ok at the next test then still 3 mths down the track is a good time to recheck the cortisol.
My appointment with the new endo got moved to tomorrow! I have all the test results I could gather, but they're mixed in with the bizarrely inaccurate notes the last endo wrote. Should I even give ANY of them to him?
Does anyone have any advice for the best way to approach the new endo about 22 hours from now? I don't want to walk in there saying "the last guy wouldn't treat me, I'm not sure why", and then hand him these records that are 25% "wait, why does it say this?"
My main question now: When he asks me what the problem is, how many months back should I go? When they diagnosed me with fibromyalgia 18 months ago? When I got really thirsty and confused 4 months ago? Should I just start with the low cortisol test results 1 month ago and leave out the last 2 years of being sick?
LowCortisol, thanks very much for the prompt advice. I found the structured layout ideas helpful. I did my best, I think it went all right. So-so. He did say the stim test was appropriate, but the only way for me to get it is to receive a new referral to a third endocrinologist, this time at the university hospital. He said they may or may not agree that it's necessary, but it's the only game in town with the whole chilled tubes thing.
I hope to get this new appointment pretty quickly, since the longer I'm on HC the harder it will be to come off. Today's endo seemed to think I should come off cold turkey and spend "as long as possible" ... "[in bed] if you have to" before the stim test. I'm thinking it might be wisest to wait and see what new endo will say? I did mention that my bp dropped enough to hit urgent care the last time I was off HC for 5 hours, he seemed okay with that.
I asked him if there were any tests we could do to rule out autoimmune involvement, since I've a 10+ year history of opportunistic infections: viral, bacterial, fungal. Respiratory, systemic, GI, UTI, etc. He said autoimmune things seemed unlikely. I tried to get a good answer out of this one, I said, "what is it that makes you say that's something we can rule out?" He said, "You would be having more problems. You would be sicker."
I'm not sure what that means, or if I was being unreasonable. He seemed to focus on the thrush thing and my inhaled steroid use (Advair for asthma). He said those can cause thrush (as I know, I do rinse), and seemed content to have put my question to rest.
Did I do this wrong? Do I have reason to suspect immune stuff? We've had to treat me like a mildly immuno-compromised person since I had pneumonia in 1997. I've had multiple doctors ask if I've been tested for HIV. ("You shouldn't have a virus for this long.")
LowCortisol did list all of those tests, but I didn't have the guts to bring that list in. I had a hard time explaining to the first endo why I wanted the stim test done, I guess I'm easily shot down..
Ok you didn't give the endo the whole list of items I asked you to check. No problem. After you do the next round of tests you can then do some or all of the ones I mentioned.
As to your query on autoimmune diseases, I cannot answer that. Perhaps rumpled can.
But you did mention HIV. I wonder....are you sexually active with partners that are not that well known to you? I ask because there are viruses that can impact the central nervous system and peripheral nervous system and may have no visual sign on your body like a sore or scab. If you have had many sexual partners it cannot hurt to test for STDs.
As to withdrawing from the HC, you mention the doctor said to come off it cold turkey. His advice MAYBE correct if you were on HC for a VERY short time, say a couple of weeks AND the daily dose was low.
Many doctors say that if you've been taking more than 30 mg per day (I say 20 mg) for say 3 weeks or more then you should NOT stop taking HC suddenly, unless your doctor gives you a very good reason. The body becomes dependent on the medicine and stopping it suddenly WILL result in feeling very bad.
I should know. An idiot endo told me to do just that. I was on HC for 18 mths and he wanted me to stop from 20 mg a day (which I tapered down to from 30 mg 2 weeks earlier, I was on 60 mg before that).
I have NEVER felt so bad as I did when I stopped cold turkey. I staggered to my doctor's office and told her that I returned to the HC after 3 days of going cold turkey. She agreed with me that the endo was wrong and I found a new (wonderful) endo.
If your treatment is to be stopped the dose should be tapered down gradually How much are you on daily?
You should understand that HC takes over the adrenal glands' production of a steroid called cortisol in your body and you must slowly allow the adrenal glands the chance to start working, gradually.
One last thing. If you taper off over say 2 months and at any time feel ill eg catch cold, have diahorea etc then STOP tapering until you get over that new illness. This is because when your body is under stress eg new infections it needs to manufacture cortisol. If your body doesn't do that but relies on HC tablets then by tapering you are denying the body what it needs to heal itself. AND if you have say a cold which doesn't get better SOON then by all means advise the endo.
I had the same experience re HIV - the docs kept making me test (4 times!) which was negative and I don't have the history to suggest it but they kept thinking I was lying, of course... *sigh* - and finally sent me to an AIDS doc! who laughed and said his AIDS patients are better off than I was. He did some auto-immune testing but nothing really was definitive enough so he was baffled. It literally took me over a year to heal a small wound (I am not a diabetic) with help. It was miserable. Long story long - he he - cortisol tanks the immune system.
So don't feel so bad - it is a crazy thing when cortisol goes out of wack.
Do listen re stress dosing - there is real danger in tapering off. Fluids and salt helps.
As your immune system is weak and clearly after 4 tests you don't seem to have HIV.
There must be a clinical reason for your weakened immune system that has not been identified so far.
I am not a doctor but even I can only a few reasons for a weakened immune system (other than cortisol and diabetes issues): Kidney disease, Hepatitis C and maybe a very simple virus that mostly has no affect on people but can be bad news for those with weakened immune systems. It is called cytomegalorirus (see http://www.centrahealth.com/health-library/c/413-cytomegalovirus)
Look into those, have them tested.
Just to be sure, I would run the following tests:
Herpes Simplex Virus 1
Herpes Simplex Virus 2
While they may not cause the immune system to be weakened they will add to your diagnosis.
glucocorticoids may cause neuron death in the hippocampus- hc may be a GC and cause this so you may want to consider this. I've read people have memory problems on prednisone long term.
My am cortisol was 2.4 but my doctors keep ignoring it and never gave me an ACTH test. I take prednisone for asthma but it doesn't give me any energy and I do testosterone shots which help energy a little.
I've actually been tested for HSV1+2, HIV, chlam, and everything else we could think of within the past couple of years. I didn't really engage in any risky behavior prior to that, they were just checking. Also, we've known my immune system wasn't really up to snuff since I was little. I have every virus and injury longer than everyone, that's just me.
I've been on HC since May 17th, started at 10mg a day, now at 25mg a day, so about five weeks total.
Still no bracelet or IM hydrocortisone, new endo said it'd be better to wait until I see the third endo and do the stim test.
Luckily I've never had to be on oral corticosteroids long-term, but I get a 1-2 week course every so often for the asthma. I have been on inhaled steroids on and off since the early 90s, endo2 wanted to blame pretty much everything on that. (Advair, Symbicort,etc over the years.)
"at any time feel ill eg catch cold, have diahorea etc then STOP tapering until you get over that new illness" (-LowCortisol)
I'm still confused about this. I'm at least mild-medium sick more often than not. I've had a low fever (99.1-99.9) with respiratory/sinus infection (varying in intensity) for months this time, and loose stomach problems at least a few times a week since early May. Still, neither endo has been able to talk to me about stress dosing. I recently finished a course of Zithromax and am about to start a course of Cipro.
I read that antibiotics and HC go together poorly, but I don't know what else to do.
I guess I'll have to ask new endo. Just gotta wait for insurance to authorize a specialist outside my network, then for an appointment.. I've been spending a lot of time in bed, clenching my teeth and not-sleeping.
Thanks again! (I'm getting overwhelmed. It's hard to think, I'm getting terrible sleep, and have no one to help me except the medical taxis as rides.)
I am extremely afraid to taper or go cold turkey because I feel so much better 20 minutes after a dose, and so sick 30-40 minutes before my next dose. I've been taking 10mg/7.5mg/5mg/2.5mg @ 8am, 12pm, 4pm, and 6pm.
Around 11am, 3pm, and 8pm-8am I feel pretty consistently awful. I'm more tired, I'm hot, I cry.
Still, between my GP and the two endos, none of the three can explain my upper left abdominal pain (pulling/tearing/strained feeling, although intermittent, last month was one of the most painful things I've ever put a number on.) Luckily, although it flares up between doses, it no longer prevents me from sitting up as it did before I started the HC. Both endos say it has nothing to do with the adrenals or the HC. Nothing came up on the abdominal ultrasound, so I think it's been dismissed as unimportant?
I was the same way - I got sick more often, lasted longer and always took me longer to heal from surgeries. I was tested up the wazoo and then they would look at me like I was crazy. :)
BTW those inhalers will do the job on you - there is a myth that the steroid uh, stays in the lungs - but no, they can suppress your adrenals just as well as any topical or ingested corticosteroid.
When you go to taper - reduce on the later doses first - BTW 6pm doses would drive me nuts. Doses after 3-4pm can interfere with sleep. BUT some people need a tiny bit at night to sleep! So you may want to take that 2.5 and move it later and see if that helps. HC has about 4-6 hours so you can spread a bit more. Also try adding salty items, salt to food and more fluids to see if that helps a bit.
I would have to read on the HC/antibiotic contra-indications - or ask a pharmacist. I know I have to take a lot of them myself. I have to be careful for other auto-immune conditions.
Re the pain - not sure if it is directly related - but imaging does not always show things for sure... been there done that have the t-shirt.
For many people, HC much after 4:00pm would drive the body nuts. I recall that I used to take 5mg at 5:00pm and even that time interfered with my sleep.When I dropped it to 2.5 mg I was ok.
Given the volume of ailments you have - which may be improved by using prednisone rather than HC (in my case it was the reverse, I felt awful with prednisone and ok with HC) - and the fact that it seems that you are passed from one endo to another like a hot potato, I would do my best to go to a first rate endo center such as Ronald Reagan Medical Center at UCLA if my insurance covered that in all or in part. You need not only a wise endo but you need consisted treatment by the same endo.
You say you're on:
10 mg 8am
7.5 mg noon
5 mg 4pm
2.5 mg 6pm
If you're like MOST people then you don't need HC to sleep. As Rumpled says, SOME people do need it to sleep.
Assuming you don't then I would taper the 4pm to 2.5 mg and move the
6pm dose to 5pm i.e. a week on:
10 mg 8am
7.5 mg noon
2.5 mg 4pm
2.5 mg 5pm
then a week of
7.5 mg noon
2.5 mg 4pm
2.5 mg 5pm
then a week of
7.5 mg 8am
5 mg noon
2.5 mg 4pm
2.5 mg 5pm
A graduated step down is best so as not to throw your system out of whack.
Thanks very much for the help figuring out doses. I tried some reading/searching today, and I'm wondering if I'm metabolizing the HC really quickly, or some such thing?
Part of the reason endo #1 was so skeptical is because I was on Prednisone for asthma/infection stuff and it *always* makes me feel worse. Sick, crazy, tired. On the other hand, I didn't know what the adrenal stuff felt like at the time, or to look for the cortisone's effects on anything other than my respiratory tract.
The idea of a longer-acting HC would make me very happy at this stage, while I do wait for a new doctor. Oh, and I would be VERY glad to travel to UCLA or anywhere for a specialist, but my insurance is state-based. I'm glad for what I get (beggars, choosers, etc), but on the whole it's been difficult to get the decent doctors, diagnostics, and meds covered.
I read today that some people pop the 2.5 HC right at bedtime, and that sounds like a really great idea. I'm actually excited, which is sad. I might try to taper the late afternoon doses but add the tiny bedtime bit. I do wake up quite consistently at 2am and 4am to eat all of the sugar I can find. (Hey though, I'm back up to 102lbs.)
HC has DEFINITELY changed my sleep for the better. I get less of it, but I've started having dim dreams again and wake up feeling less like I've been running all night.
Thanks a 10th time. I really do appreciate the feedback.
I had this great response to HC suppositories, I could breathe better and relax. is that asthma related? I also have colon problems and bleeding and cramping
I also wonder if asthma inhalers and prednisone do kill neurons? I would not go on prednisone if you can avoid it since some neurology researchers say it kills the neurons in the hippocampus maybe even at 10mg. personally I had no energy on prednisone though I think it helped me sleep better
As I mentioned earlier, the total daily dose is the important thing. Not when you take the HC. That said, you should be on it for as long as an endo feels you should on the understanding that the less time you're on it, the better you'll be in the long run. You should decide for yourself which drug works better for you: HC or prednisone and stick to the one drug.
I understand your issue with insurance. But even so, you have nothing to lose by calling UCLA and asking what is the cost of a consultation. Tell them what insurance you have.
My reasoning is as follows: if you go there with all your blood work, hopefully you'll receive a diagnosis and a treatment plan. UCLA will have no need to do any other diagnostic tests.
What you need is to be put on the right road. If I were you, I would ask what UCLA will charge, if it's not too much I would go there and tell them if they can either offer you a lower price (given your finance and New Mexico insurance) OR if they can recommend someone competent in your neck of the woods.
By approaching UCLA, you have nothing to lose.
May I suggest once you find out the best person to see there you must email and NOT call him/her. A short to the point email will generate a better response from an honest competent physician. At least it was in my case (with a hospital in Boston).
I look at dosing though at mimicking the normal diurnal rhythm as much as possible - and that means the bulk of the dose would be on waking - so most people if they are given 20mg, take 15mg on waking, and 5mg later. But those are my thoughts - you have to do what works for you.
It you look at websites for a diurnal or circadian rhythm - the peak is around 8am and it pretty much falls from there - and you really want to imitate a normal person. A normal person does not have much in the afternoon (hence the wanting to nap).
The reasons for no cortisol at night are building bone and muscle, repairs etc - so make sure you still remain healthy. You may want to do 15mg in the morning - 2.5 in the afternoon - and 2.5 at bed and see how that goes?
Also, try a magnesium pill at night. That may help you sleep better. Chalky as all get out, but it does help.
Pred and HC are different animals - Pred takes longer to kick in. It lasts longer. I am on dex now - ick - driving me nuts.
I want to second rumpled's view on taking magnesium. I was on that for a while and it very much helped me get to sleep.
Bear in mind that I found taking magensium 30 mins before bedtime the best and taking it in powder form (bovine extracts) and mixing it with water to be the best. From memory I took one (5gram) teaspoon mixed in a glass of water.
I tried the 2.5mg bedtime HC dose last night. I only woke up a few times, didn't GET up at all (unheard of for 2 years), but I sure did forget what it was like to have such vivid dreams. That was kind of terrible, but I bet my brain was happy to get the sleep for once.
Starting this morning with 15mg so I can try much lower doses over the course of the day. Still making zillions of calls.
I think sleep apnea really lowers all of your hormone levels- you don't rest and your O2 levels can be really low. my cortisol was 2.4 last year and it's probably pretty low. I started taking HC 25mg and hormone replacement and feel a little bit more energy but still not back to normal now for 3 years
Apnea can be a bear...
With your HC replacement - are you also getting florinef (if needed) and how are your sodium and potassium levels?
This is generally a life-long issue, so there has to be testing along the way - and may be other auto-immune issues as well?
I'm told my ACTH, sodium, and potassium levels were all normal (I'll refer to them later). GP said if the latter two had come up differently at any point, he would have done the cortisol test a lot earlier. I do tend to get CBCs and such with some frequency.
So yeah, just the HC right now. I'm still hounding UNM Endocrinology about my referral because so far all I can get them to say is "we'll call you in 3-4 weeks to schedule an appointment."
I'll have to say I'm pretty much on top of it, but I might be losing some tenacity due to having been fighting off the respiratory/sinus thing for months now. I did the Zithromax last month but am afraid to start the Cipro I've been given because I don't understand antibiotics and stress dosing and.. what have you.
The 2.5mg HC dose, last thing before I fall asleep, that's been really great. Thank you.
drenal insuffiency is kind of hard to fix. You have to build the body up to be able to work. Years of prednisone or steroid use or heavy stress or heavy physical stress or bad eating habits.....like lots of sugar and not much veggies or good protein all take you to the door of this
Youve foiund some poor doctors. its so sad that the first few you had were so uninformed and didnt seem to care. I didnt finish the entire thread of yours so I dont know if you did find a good doctor but any way I sent you a message to your inbox, Im new here so Im not even sure I did it right and will it go through?
first of all you should do a saliva cortisol test
that is call a cortisol 4X.......meaning 4 times a day
morning noon dinner and bed time
a salivary test measures it the best way
there are a couple of labs that do this testing independantly and you do not need a doctors order. but some do and dont take insurance
that is the bad. they are fairly priced. mine was about 120.00
but worth this price.
I am very high in the morning and low all day and night drops more
this means lots when looking at what lows at ceertain times do.
I have all the labs information written down but dont have it in the room with me now , I think I know where it is but message me and I can get it for you along with many doctors sites as how to go about treating this
a lab I know of that does it is canary club or the canary club
maybe canaryclub.com or . org
one is med lab or my med lab
any way if you go on ************************* they have labs that do independant testing for adrenal things
did you ever have the thyroid tests.they all work together
the glandular system all hasd tp be synchronized. the pituatary
once you reach menopause the mess starts because again the gland system that I listed above makes hormones. and we have many more hormones than just progestrone and estrogen
the adrenal glands make some estrogen and when the ovaries stop making estrogen the adrenal glands have to pick up this pace but if they are weak anyway they arent going to make much.
You have been advised by the doc to stress dose during an infection - so you are upping fluids, resting etc as well as some extra HC during this time?
Stress dosing is part science, part art... the most common *rule* is to double for a fever or vomiting/runs as dehydration can lead to a loss of sodium. Once you start feeling better you taper on down. With a chronic or longer infection like sinus or bladder - you need a boost too - and that can vary with the person. That is my art part. Too much and you get wired (which can happen with some antibiotics too...) and too little and you are wiped out and cannot heal - so you have to know your body and what it needs. I carry around 5mg pills - some cut, some whole and so I can vary what I need to the 2.5 and when I start to feel cruddy I take either 2.5, 5 or 10 or 20mg depending on what is going on - plus a zofran if I am really bad
Honestly, so far I've only had the internet to help me stress-dose during an infection. I've mostly been treated by my GP who admits to ignorance on the entire subject. I still haven't started the course of Cipro he ordered. I'm not vomiting or anything, but I feel really tired/wobbly and out-of-it on and off.
I've had this borderline respiratory and sinus infection for almost two months now, after I fought off the worst of it. The NADF guide says 10mg for infections with mild fever, does that mean 10mg per day extra? I can't do that for weeks, can I?
The one thing both endo 1 and endo 2 said was "I don't want you going above 20 or 25mg a day". Neither seemed to take it seriously when I said I've been having problems with infections.
Can someone list for me as best they can "how I feel when I've had too much HC" vs "how I feel when I haven't had enough HC"? That might be really helpful to me.
I am going to jot these blood orders from endo 2 here while it's in my hands, before I have to hand it over to the lab people this week: free t4, TSH, estradiol, LH, FSH, prolactin, HGH, 17-OH progesterone.
If you have a long term infection - yes! Otherwise you cannot heal. For a normal dose, yeah, you should moderate your dose - but if you tested a sick person, their cortisol should be higher in response to the illness.
If you have too much, you will not be able to sleep. Your mood will get snippy and you will be hungry. Your face may get too red, you may gain weight - especially in your face and belly. You may get acne. You may get stretch marks that are purple or red. You may not heal (that one *****). Look up steroid induced Cushing's - and it can help you out. There can be so many symptoms and they vary.
Vs not having enough - you just won't get better and be even more fatigued.
I don't know why your endo's don't know how to advise you on stress dosing! This is serious business as it can cause a crisis! Did they tell you about an emergency kit, give you a script for a solut-cortef acto-vial and needle and tell you to get a medic alert bracelet? Normal dosing is one thing but they have to get you set up for emergencies - they don't always happen at convenient times or in convenient places.
Yes ill correct, at least in my case. I was on HC for 18 months and my memory was failing. There was a time when I was off HC and placed on Prednisone (for 10 days or so) and I could swear my memory was far worse.
So I retruned to HC.
It is now 9 mths since I stopped HC and Prednisone and can honestly say my memory has improved markedly.
Thanks for your replies, Rumpled and LowC especially. I got to see endo #3, he seemed much more reasonable and less put-off. Let's see what you think. I'll try to be concise.
He did scrap the labs requested by endo 2, the ones I listed on 7/2 (they had not yet been drawn). Based on the papers I brought him, he said no other labwork needed to be done. I'm gonna try to consolidate and post my other labs soon. I've been focusing my energy on an upcoming appointment
about connective tissue disease stuff.
- He switched HC dosing from 4x daily to 2x daily, not including the bedtime one. Increased AM dose to 15mg. PM dose 5mg. 8am and 4pm.
- I forgot to inquire about bedtime dose, I think I will call. been taking 2.5mg.
- He said to start the Cipro for the respiratory thing, increase to 40mg/day IF I start feeling like I need it. 10 day course of Cipro started 7/7.
- He said MRI (ordered by neurologist to rule out MS) rules out pituitary involvement? I think he was saying this is what makes the stim test unnecessary. I THINK said we know for sure my adrenal glands aren't making enough, and pituitary problems would have been obvious from the imaging, even though they weren't specifically looking for that. Am I understanding this right? Maybe I should email him these questions, he gave me his email.
- I THINK he said that my normal electrolyte values rule out autoimmune involvement. I'll try to post those soon. Is that just potassium and sodium, the relevant electrolytes? This pile is confusing to me, and a lot of the tests are for other conditions. I'll use LowCortisol's above list to try to help me sort through the stack for info relevant to AI.
Anyone have anything to add to this list, for me to try to find and consolidate the information for future use?
I did get a prescription for the IM Dexamethasone, which Walgreens says is on order (been 4 days). I'll call. I am filling out the Medicalert forms as well. Endo 3 said I'll want to wear one for at least 6 months.
Here's the kicker. He postulated that the AI may be a reaction to long-term inhaled steroids for asthma. I'd always heard that Prednisone bursts were what to watch out for. Oral steroids. They always said that inhaled steroids sort of didn't count for anything but thrush. Heck, it's supposed to be kind of stupid to have moderate-to-severe asthma and avoid inhaled steroids, isn't it? I've been on inhaled steroids more often than not since 1990 or so, but probably had fewer than 20 Prednisone bursts in my life. I think?
I did some searching, and it really looks like people are popping up with AI from inhaled steroid use, particularly with fluticasone, a component of the Advair 500/50 (BID) I was on until May 9th. That's when I had it replaced with Symbicort 80/4.5, oddly because I was worried I was on too much steroid. (I've been overusing my Xopenex rescue inhaler since then, and have made an appointment regarding specifically this, as well as leaving a message asking my primary to please talk to new endo about what the right course of asthma steroid action is.)
4/1: symptoms got scary enough for me to write down "this is definitely not just me, something is pretty wrong"
4/23: MRI to rule out MS is "unremarkable"
5/9: switched inhaled steroids
5/14: cortisol test #1, 0.5mcg @8:30am
5/17: start HC
7/3: see endo #3 for first time
Oof, is there a free place online that helps one make a database of lab results, or am I just gonna have to go all OCD in Excel?
Thanks for any replies. I know this has been a wordy thread. It really has been helping me consolidate my thoughts and information.
Traumatic brain injury is relevant actually - people can lose hormones - one or more from that type of injury. If you search for articles, you can find them easily.
I actually sort of disagree with the doc on the MRI... I cannot remember now if it was a *pituitary* MRI - and it was done correctly so unless it was done right, and read right and still small lesions can fall between the slices.
Inhaled steroids can certainly cause AI - or steroid induced Cushing's - it just depends on the person and the amount of steroids.
The doc is doing basic tests - but IHMO not complete loops (as in he is doing cortisol, but not ACTH... and plain testosterone ick, bioavailable much better as it has all components). So the odds of catching anything are not that great. IMHO.
Re thrush - the dang immune system tanks with high dose steroids hence why they use it for auto-immune diseases so it certainly dose more than thrush!
Oh geez, I'll google the TBI connection, thanks. I emailed the new endo today for clarification and got a reply. I'm having trouble understanding it fully (it's pretty hard to concentrate), but I'll show you.
"The stim test does not help distinguish between an adrenal vs pituitary source of AI (an ACTH level does) but rather makes the diagnosis of adrenal insufficiency when we're not sure if you have it. In your case we know you have it and you're already on treatment. We could check an ACTH level (to make sure it's not primary rather than secondary) when you're feeling more stable on your regimen (it would require you to skip a couple doses of hydrocortisone before the blood draw so it might be a bad time to check). Yes, the prior steroid therapy and the lack of electrolyte abnormalities makes primary AI (autoimmune) less likely. But still worth looking into as management might change if it were primary (i.e. addition of fludrocortisone to prevent electrolyte abnormalities, help with salt craving).
Pituitary AI can be from steroid use or a mass. The MRI confirmed it was not a mass."
I'll grab the MRI results I have to get a better idea of what they were trying to do in there. (Demyelination is all they'd told me they were looking for.)
I am unsure if you're aware of it, but it would help for you to read up on the difference between PRIMARY or SECONDARY AI.
Also with respect to TBI, you bet your patootie that it disturbs your healing if taking steroids. I recall vividly post pituitary surgery (I had a mass) my neurosurgeon said I will be on HC for 3 but "definitely no more than 6" mths, Post op I was well for a few weeks then endured a hemorrhage in the brain. That set back my healing and I ended up on HC for 19 mths.
With respect to MRI, I agree 100% with rumpled. You do not want a regular MRI, but a PITUITARY PROTOCOL MRI ideally with a machine that is sensitive to very small lesions.
He is right on the stim test - if you want to know source though there is another stim test you can add on and that one would show source. As for ACTH showing source... eh... eee... ah... not perfect. It should be a good indicator but the test is rarely done correctly (chilled tube, spun right off the draw and put in the freezer right out of the centrifuge) to prevent degrading. I had LOW ACTH all during my Cushing's testing (yet they saw the pituitary tumor) so it was weird - and I literally flunked every stim test (I did not study? I have no idea maybe I just hate dex? CRH whatever...) and I know others like me so while it should be an wonderful 100% indicator - I beg to differ...
There just is no 100% with any of this - I know exceptions - I have been a lot of them.
If the radiologist was looking for a MS type diagnosis - he likely did not scan the pituitary very closely. Why should he blow up the pics on the pea when he/she was looking at the brain? I know many many people that get clean scans that send them on the surgeons who go ah there it is!
I know about the primary/secondary AI thing. I've read a lot lately, but to be honest even non-medical paragraphs look like a mass of polysyllabic mush to my brain right now, and my memory is even worse. So if I sound ignorant, it's definitely not for lack of effort. :P
This IS my third endocrinologist, can there possibly be a tactful way to insist that I need additional brain imaging? I had the CT scan after the concussion (unremarkable), and the MRI when I started switching all my words around. I have to pull those results out.
Thank you for helping in my thousand page thread. <3
CTs won't pick up anything unless it is huge - and I would not wish that for anyone.
No one sounds ignorant - I don't know everything either... I learned by listening to my doc (a few good ones), seminars, and reading the pubmed gibberish - I did take what I thought was interesting and cut and paste it into a document (with the URL - after a while stuff moves). After a while, you do understand. But the hormones do contribute to mush-brain.
Re new MRI, insurance is also a factor but if you look at your scan, look for clues on how they did it. A pit scan usually says - dynamic pituitary scan done with and without contrast. Also, there is a helpful doc here that will look at your existing scan for free - he may find something the radiologist missed. Try contacting him on the expert forum...
BTW after a concussion - GH/IGF-1 would be the first hormone to go - so the doc should at least test that one...
Whoa! No one here is advocating that you stop a prescribed medication! That is very very dangerous - you need the medication!
Steroids are a double-edged sword - you may not being having the side effects anyway. Some people have many - some have NONE - so you cannot read a post about someone else (who may have other disorder, health history, family history dna etc) and assume it pertains to you - please work with your doctor. Nothing here is medical advice!
As for an herbal solution - sadly, (and perhaps happily!) there is nothing I know of that suppresses the immune system that you can get OTC. If anything, work with your doctor to moderate your doses or add/change medications - but DO NOT GO OFF COLD TURKEY. If you have asthma - you need this medication and need it.
Personally I left a message for my primary asking him to please discuss with the new endo what to do about inhaled steroids for my poorly-controlled asthma. I see Dr. Primary on Monday, we'll see if they spoke to each other.
I'm jumping in here without reading everything---it was too hard on my eyes. sorry if i repeat anything. As far as the MRI---I assume it was done with contrasts--just because it did not show any damage or any pituitary disease does not mean that your pituitary is working properly.
It is obvious by my blood test that my pituitary is not working properly---if i believed the thyroid testst were correct (which i do not) i know that my TSH and T4 should not be low together---but they have been anumber of times---this indicates a pituitary problem. My first endo told me that sometimes some cells just quit working.
pituitary damage can be cause by a good knock on the head--something you might not really think a whole lot about--except that it hurt---and i assume that is what could cause some cells to stop working properly---maybe not completely, but not properly---I'm kind of putting my own thought here on that one.
As far as the immune system not functioning properly, if your endocrine system is not properly balanced---your immune system is compromised. i would never dream of going to a naturopath---but I did recently travel across the US to see a doctor that specializes in balancing the endocrine system---he used to be a thoracic surgeon, so he is a regular MD who haas adopted a wholistic approach.
i am comfortable with this---especially since he tested not only the regular stuff that docs test--he also tested some vitamins----and I was not at the levels i should be at. i had already figured out (on my own) that my Vit D was low---even though it was "within lab ranges" My bones hurt---I finally looked at my test the bottom of the range was 30---and I was 33. i had started Vit d supplements on my own
I had managed to raise my levels to 47.4 by the time the new doc tested them. i have a ways to go---but my bones hurt alot less.
He also gave me some diet info that would have the "politically correct' diet gurus throwing fits--but I happened to end up sitting next to a biochemist on the return flight home---who verified what the doc's info was saying---what are the chances of that---i took it as a sign---not sure if i believe in signs--but I took it as one anyway!!
Now, the autoimmune thing---telling you that you would be sicker if you had an autoimmune disease???? Our family has all kinds of autoimmune diseases. One of my sisters has four different ones---and she is really sick. but, at one time, a doctor told her that she could not have celiac disease because she was not skinny enough.
I Have 3 children with celiac disease--and they are all skinny---but all of my kids have been skinny, so that is irrelivent. Before my children were diagnosed with celiac---the only person I knew that had celiac disease was OVERWEIGHT. When the body is not absorbing nutrients because of too much intestinal damage---a celiac could be hungry all the time and constantly eating because their body is under nourished. They gain weight, but they remain undernourished.
I was originally diagnosed with hypothyroidism, thyroid nodules and secondary adrenal insufficiency. I was on armour thyroid and hydrocortisone---then another doc pulled me off saying i didn't have those problems.
The new doc was getting high blood serum readings of cortisol, but a slightly low 24 hour free cortisol urine test. But, when he checked my blood pressure sitting and then standing---I dropped at least 20 points. i also did not have an appropriate heel relfes--sorry, I can't remembe what it was called. he told me that all my symptoms pointed to low cortisol---but this was after a clinical examination---not just a blood test examination.
He does not goe by "lab " values, he goes by values for optimal health.
He will also raise my thyroid until symptoms improve instead of according to blood tests.---That is how they used to diagnose low thyroid---clinically---not by the numbers on a piece of paper.
so---that is my 2 or 3 cents worth--hope it helped somewhere along the line.
I have one paper here in front of me that might be helpful. (I've been trying to deal with rheumatologists and unrelated connective tissue stuff all week.)
"MRI of the brain without contrast
Technique: MRI imaging of the brain was performed on a 1.5 Tesla scanner. Sagittal T1, Sagittal FLAIR, axial T2, axial gradient echo, axial T1 and axial diffusion weighted sequence was performed.
Findings: Comparison is made with CT of the head 12/06/11. [Post-concussion]
No midline shift is seen. The ventricles and basilar cisterns are preserved. No extraaxial fluid collections are seen. The orbits, paranasal sinuses and mastoid air cells are unremarkable. No white matter lesions are seen. On gradient echo sequence, no evidence of old hemosiderin deposition is seen.
Impression: ~Unremarkable MRI of the brain.
So "The MRI confirmed it was not a mass", said by endo #3, might not be accurate based on the kind of MRI it was? I think I remember him commenting that it would be very obvious from the image if it were pituitary.
I'm trying to fill out the Medic Alert form, since he said to. NADF says "ADRENAL INSUFFICIENCY - NEEDS STRESS DOSE CORTICOSTEROIDS". Is that what you guys use?
I admit that I did not have a medic alert bracelet, but should have. Instead
I went EVERYWHERE with HC tablets in a pill box which I carried with me 24/7.
The text I was going to have, which I think is correct is "Adrenal Insufficiency - takes hydrocortisone supplements".
Do not say "stress" does because I think, and Rumpled will correct me if I am wrong, but "stress" refers to when your body is under distress e.g. when you are ill, very tired, doing exercise or undergoing a medical procedure.
You, I understand are taking HC supplements daily TO GET BY, so don't write "stress" on the bracelet and downplay your condition. By writing "stress doses" you will wrongly convince others that only when you're stressed you need HC supplements, which of course is not true.
Stress dosing is for when the body is under duress.
If you get a medic alert bracelet - they guide you on what will go on the bracelet. Mine just says Adrenal Insuff, needs Corticosteroids" (there is a bit of space limitation) as well as a few other things.
If you get your own, I suggest NOT putting steroid but corticosteroid as steroid can mean many many things. Hydrocortisone is fine as well - that is very specific.
Hopefully you educate those around you what *stress dose* means so they know how and why to dose and to recognize the signs - my hubster can do so much better than I since, alas, one of my signs is confusion and that means I don't always think to take more medication.
It's true. I've started saying "hey, if you notice me getting dumber before I do, can you point it out?" It can take a minute sometimes. Thanks for the bracelet advice.
Can I get away with a necklace? They sell so many things that don't even look like medical anything, I was hoping a huge red caduceus around my neck would be as effective as something driving me crazy on my arm. What do you think?
I think the ER guys prefer a bracelet but frankly, just have something on you. I want to get a tattoo but afraid that a)I would get an infection - just my luck and b)it would get ignored LOL!
I get the cheapest medic alert steel one and add on my own bracelets so I can change them as I feel like it...
I had a necklace for a while but it kept getting tangled with other necklaces, hair etc - so I went back to the bracelet... they have lots of different designs and you can even just get the bracelet, just off the thing and hang it on something you like! I have blue right now - they also have pink, purple etc. I also have the smallest size.
do i need to wear a medic alert if I am only taking 20 mgs or cortef? i know I should have had one when I was on 30 mgs--but my doc never told me--I looked it up and then had to ask her---she said that i probably should--but they didn't really seem to know what to tell me to put on it--really frustarating.
I've heard that on only 20 mgs i could actually drop straight off the cortef--I thhink I might not feel the greatest--but i've heard it is low enough it could be done.
so gals, do I need to the medic alert? what about when i go in for a procedure--I need scopes at both ends--do I need to make sure they know I'm on cortef---although I would imagine they would ask all the meds I'm taking anyway. Do I need any extra meds for those tuype of procedures?
From what I know, 20mgs is a fully suppressive dose and I sure as shooting could not drop off that dose from one day to the next safely. That is not a low dose. 5mg is a low dose but I know people that have hung on to that dose for years.
If you go in for ANY procedure - they need to know ALL your medications. I would have to take extra and you should too! Sometimes for the twilight things, I just get a boost of 50mg or so and they watch me - some docs go all the way for the 100mg. It really depends on the facility and the procedure and the doctor. And how freaked out they are by my history!
Oh.. they're about to try scoping my top ends as well. I still haven't been above about 30mg HC in a day and try to keep it to 20mg. My primary thought that my endo's "feel it out" instructions were oddly loose. I'm still really not confident about stress dosing. It really doesn't seem clear-cut with my... stressful lifestyle?
At this stage I'm wondering if, even at an average of 25mg a day, I might be underdoing it. There's a lot of dumb stuff going on with me.
rumpled---if confusion is one of the symptoms---i could really be in trouble--I'm not quite with it alot of afternoons---i just can't seem to get my mind to work!!LOL!! Actually, now that I think about it, I think I am doing a little better in the afternoons.
It had not really ocurred to me that my mind wasn't quite so bumbled--maybe the meds are helping more than I realized. I was n't sure what to expect when I went back on the cortef---and I didn't know how to answer when the doc asked if i thought the cortef was helping.
I still can't figure out what to fix for dinner----but i think that set in about a month after getting married----and that was 24 1/2 years ago!!
Now now now - we all have our moments when the mind is not clear... As for dinner- that is a nightmare! I agree.
Re stressful lifestyle - eeek! If you take too much, you risk steroid induced Cushing's. Just keep in mind that too much is bad and too little is bad - so you really do have to balance that you have to try to get what is right for you without doing damage.
Stress dosing = fever, surgery, vomiting, runs, air travel (an extra 5mg or so), death in the family (for a short time)... stuff like that. Where you are dehydrated, sick, your heart beating fast for a long time as we tend not to be able to raise our BP - then we need more help. I know my body a bit more now - I tend to salt first if I can catch early (e.g. salt tablets, pickles, tomato juice, v-8) and increase fluids and that means I can take less cortef or maybe none. But as soon as I get nausea, I act fast.
The stress dosing still, it's eluding me. I feel like I'm not on enough, and end up taking it so late in the day (after symptoms have gotten bad enough) that I don't sleep properly. On the days I can time it all well, I sleep better than I have in.. memory.
I've been fighting various minor infections and been on several abx and 'zoles in the past few months, and quite often have a temperature of 99.3 or so. Yesterday it was 100something.
Yesterday, when I talked about how my blood pressure felt crazy all the time in both directions, my primary did a little preliminary orthostatic changes exam. My bp was was 118/76 lying down with a heartrate of 56. Upon standing it went to 104/62 and heartrate of 74. He said all of these were within a few points of the values where he would be able to diagnose anything, but at least he finally noticed. (Heartrate was 88bpm when I came in at first. I'm somewhat convinced my temperatures and heartrates are oddly controlled by the ambient air temp and how much moving around I've done in the last 10 minutes.)
At the moment I'm trying to stay as low on the HC as I can, but it's hard. Sunday I put 15/5/2.5mg in my case for 8am/12pm/3pm. By 1pm I was having abd pain, confusion, and crying, so I took the 3pm dose early. At 5pm I took another 5mg for abd pain and confusion. Did I mention I signed a new apartment lease on Saturday and moved this weekend?
Tuesday I put 15/5/5 in my case intended for 8am/12pm/3pm. I took the morning dose at 5am. By 8:45am I took another 5mg. Noon dose as planned. At 2pm I took an extra 2.5mg, took the 3pm dose as scheduled, but by 4:30 I took another 5mg because I was unusually tired and again, the abdominal pain. Attempted bedtime dose of 2.5mg at 10pm. Bedtime dose works out VERY well when I actually fall asleep. This time I was feeling stressed out and couldn't sleep, ended up taking another 2.5mg around 2am. It's 2:30 now and I think I might be able to sleep.
What is that, 40something? Endo said I could double my dose for a few days at a time when I need it, but to try to keep it below 20 or 30. Keep it low. I feel like I'm doing this at random, but it's also been helping a ton.
I can't do this for 6 months til my "wait til you're more stable" followup appt. How can I put this succinctly in an email to Endo?
Moving - you need to stress dose. I fell asleep in the heat wave we are having. I worked outside a bit to do some planting and a bit of light shopping - out for 3 hours. Yikes.
I don't know, personally, if it would help for pain - I would go for a tums or whatever to treat what the pain is. The thing with steroids is that the side effects are not going to show now - but they will hit you with a vengeance later - in a bone scan, eye appt, loss of muscle etc - so you think you are ok and then wham... So try to back off a bit and go for salt (since you BP is so low that will really help!) and fluid - the pulse is up due to fluid issues. I just put another bottle of tomato juice in the fridge. Try non-medical things first. It will help.
It does take learning a new body - and it does take time to know what works for YOU. Experiment with olives, pickles, salt tabs etc - and get that heart rate up. My hubs laughs at all the types of sea salt I have around - but hey, it helps me. The heat does not help.
listening to you gals discuss this--makes me wonder what I am supposed to be expecting from the cortisol. I am taking 10 mgs in the morning and 10 mgs around noon. the doc also said I could take 5 mgs 4 times a day. i don't kmnow how to tell what is the best way for me to be taking this.
I do have times when I get really teary and start obsessing about all the things that bother me--i've always assumed it was just my depression hitting me at the moment for whatever reason. i never know when my moods are going to swing low.
I knew that low cortisol could cause emotional swings---but it never ocurred to me that maybe I needed to adjust my dosing to try and keep my moods more stable.
Now that i am back on cortef and armour and am taking supplements for the things I am low in, I have noticed that two times recently I didn't feel a rain storm coming!!! This is big for me, I sometimes feel them 3 days ahead. I just increased from 1 grain to 2 grains of armour on friday. I wasn't expecting to feel any improvement for the first month--the doc told me it can take a month before the thyroid starts to make a difference.
I have been on 1 grain before and never felt a difference---so, I am waiting to see if 2 grains will make any improvement for me. Should I be expecting at least another month before expecting any improvement after raising the dosage---if I am going to feel any improvement?
My bones are hurting less now that my Vit D is up to 47 from 33.
I still haven't gotten a couple of tests done yet, including the sex hormones.
I am taking progesterone 8 days a month. I am supposed to take it from day 18 to day 25. I started it when my breasts were sore--it was the only thing I had to go by---I didn't get sore breasts during what should have been the next cycle, so I just went ahead and started the progesterone 29 days later.
I guess I'll just try and take it based on a normal 28 day cycle and see if that works. when I was still having periods I was like clockwork every 28 days.
Ok, i said too much---again.
My main questions: How do I figure out the best dosing for my cortef--what things do I look for?
Will the armour increase take about a month to know if it is helping?
If I continue to take the progesterone according to a 28 day cycle and it keeps the breast pain at bay---should I be able to use that as a way to guage when to get my sex hormone tested?---the doc wants them tested during a certain point in the cycle.
A normal person has the bulk of cortisol in the morning - look up circadian or diurnal rhythm and look at the the pics or read up. It is strange to dose up where you are going away from normal in that it does not give the body recovery time - that is where you get side effects IMHO. Cortisol basically wakes you up in the morning and puts you to bed at night. There are exceptions (like the people that need a midge at night to sleep) but the goal is to get a normal rhythm or as close as possible with the imperfect medication.
As for it being a miracle... eh, no. I know we pretty much all get weepy and no day is like the next - I think I will be ok and it may be true, but I may be able to do what is planned, or I may not.
The female hormones are wild - I tried and tried to regulate mine - I finally just yanked everything and felt wildly better and that was the only way for me so I don't have any advice on it. All I know is they made me effing miserable from the time I was 14.
Re MEN - there are many different kinds and now my mind fails me (rainy day - ha ha) but I don't recall tumors in the right places for that to be a consideration? Pit tumor is one place - but also has to be others.
Also, if you have AI or addison's, cortef is usually forever.
rumpled---I didn't follow what you meant when you said it is strange to dose up where i am going away from normal in that it does not give the body recovery time---can you explain that a little better for my beeblemindedeness this morning.
I'm getting really tired and cranky around 4 pm. i am wondering if i should be taking 10 am, 5 noonish and 5 around 4.
LowCortisol: I haven't heard or read anything much about the endocrine neoplasia. Isn't that for people with tumors?
I'm finding way too many mood side effects on the HC, presumably because I have a pretty bad preexisting anxiety disorder. I need to call my endo.
I still feel like I don't have enough HC in me about 75% of the time, even at 20-30mg a day. (I have been extremely stressed out and panicky as well as doing more physical work than I usually have to, I can expect that much to last another two weeks.)
MEN is, I am informed, for those who had a pituitary tumor removed and develop other problems that are related to either the pit tumor or the AI that followed it. I asked if you were checked for it in case it also occurs in people without tumors but with AI
You would feel the need to lift the HC dose when you do strenuous work. I would have thought that your anxiety issues would impact on how much HC you would need. Ideally a good endo would be able to tackle both conditions by understanding exactly their causes
Cortisol, in a normal body - varies. It is high in the morning (it wakes you up).
Progressively through the day it lowers. At night, you have next to nothing in cortisol levels - at night, your body *recovers* - you build bone, muscle etc. And then the cycle starts again. When you have an abnormal cycle, such as when you have Cushing's or take long acting or long term steroids, your body tends not to have the *recovery* and bones and muscle (and eyes) take a beating, and you get cataracts, osteoporosis, weak muscles etc over time.
So I rather disagree on just total amount - it is important HOW you take it. I know from experience that the damage is there, but may not show up until later. Sleep is restorative in many ways. They have been actually working on a HC pill to mimic a normal person so you can take one pill and it would release the bulk in the morning and the rest to mimic a normal body - or as much as a pill could. It is not yet available in the US... dang. I think it is in the Uk - duocort?
do you think if I tried dosing it that way it would help with those afternoon slumps and crankiness I am getting? I can hardly keep my eyes open and have no energy to do anything---right about the time the kids get home from school during the school year.
"I would have thought that your anxiety issues would impact on how much HC you would need. Ideally a good endo would be able to tackle both conditions by understanding exactly their causes." -Lowcortisol
That would be really really great, but I'm on endocrinologist #3 and am having really bad problems still. My psychiatrist just put me on extra Klonopin, since we don't really know what else to do. I guess I could email new endo again specifically about the anxiety/stress thing. Maybe I should remind him that I have low-grade infections more often than not?
I increased my armour thyroid a little over a week ago--I went from 1 grain to 2 grains--actually it is NP thyroid--it's what the original formula of armour used to be---anyway--I seem to notice that I am getting more tired since I raised the dose.
I am on 20 mgs of cortef. Could this be an indication that I need a higher dose of cortef. I used to be on 30 mgs of HC before I was pulled off everything--but i was only on 1 grain of armour--which I think was too low.
I went to bed at a decent hour last night, i thought, and I got up around 6:30. I have not been able to feel like I have been fully awake all day--and it is almost 2 in the afternoon. I feel groggy and exhausted.
I know the directions the doc gave me said to watch for tiredness and irritation---especially in the afternoon as the dosage of thyroid was raised.
Does anyone keep a record of their symptoms to try and see if they can see any pattern to what is going on with them?
By all means keep a journal because some days are better than others and it is wise to try and establish why this occurs. Are you taking Vit D? I was disgnosed with low Vit D and was placed on 5,000 IU/day which is 5x the normal dose. After 30 days I was taken down to 2,000 IU per day. After the 1st month I felt better, really better.
You say your psychiatrist put you on a new drug, Klonopin. I assume it is to control the anxiety. If that is so then give it a go. If it works then you can explore the HC situation properly.
A key part of any medical investigation is to focus on one issue (e.g your cortisol production) while keeping other issues under control. So if the Klonopin actually helps, then any investigation into the cortisol production will be able to make allowances (from any expected impact from Klonopin) in your treatment plan.
The last thing you want is to jump from one anxiety med to another as they will only muddle or delay any adrenal diagnosis.
Oh, Klonopin isn't new to me at all. None of the benzos are, sadly. I've been on and off of benzodiazepines for over a decade. We just raised mine like crazy because I've been having a lot of anxiety and panic. I sure do keep posting these at 3am...
Weird - I usually associate the anxiety/panic etc issues with high cortisol... my buds with that run through the gamut of diagnosis from depression to bi-polar and some, sadly not all, reduce significantly with treatment.
Totally agree on the vitamin D - that stuff is like a miracle!
I am taking 10,000 IU/day of Vit D. My level was so low that my bones were hurting--but since i was "within the lab range", no one picked up that it might be the cause of my bone pain.
By the time my new doc tested my vut D it was up to 47 (from 33) He is having me continue the 10,000 IU/daily.
I take clonazepam to keep my anxiety under control--it seems to help me quite a bit---but More often than not I am still on an emotional roller coaster.
I could hardly keep my eyes open for most of the day yesterday---but I had a horrible time sleeping---took forever to fall asleep and then ikept waking up all night long.
The doc is havingme take all of my thyroid in the morning---i am wondering if i should take 1 grain in the morning and then take the othe grain later in the day. I have seen recommendations to do it both ways.
I am extremely sensitive to what people say--my feelings seem to get hurt far too easily---even when nothing unkind was intended. This is making me wonder if maybe i need to ask the doctor about raising my cortisol level a little bit.
I'm havinbg a hard time getting down what I want to say. I actually think I am more tired and sleeping worse since my thyroid medication was raised. I would expect that an increase in the medication would make me feel better.
Has the doctor told when when you're to reduce from 10,000 IU? I ask because you're now at 47. The minimum for "sufficient" Vit D is 51.
If I were in your shoes I would stay on 10,000IU for maybe a month and then lower the does to 5,000IU for a while.
You mention you're VERY sensitive to what you hear. As I had low cortisol but no other issues (like anxiety) it is my opinion that the sensitivity you mention relates to your anxiety and the medications you take for that.
When my cortisol was very low I would be sensitive to EVENTS not people. For instance a small noise (say someone pushing a chair) would rattle me where it would not affect most people.
Have you been checked for asperger's r similar? A friend of mine was diagnosed with that and is VERY sensitive to what is said AND takes everything literally
The doc intends on doing blood work every 3 months to check where my levels are.
When I am not dealing with so much anxiety and depression i am not nearly as sensitive to things. When I was going through a really good period, my hubby and I could have a disagreement and i could forget about it pretty quickly--it was so much easier to let things roll off my back.
Actually, when I was referring to being bothered by what people say, it had to do with a mistake that was made by someone else and they kind of tried to shift the blame back on me and hint that I was expecting special treatment for my daughter and that I should have checked on something a couple of weeks before. This is an issue they have known about and been dealing with for 5 years. I had assumed everything was taken care of, but it wasn't, and I didn't get told until the very last minute---they just screwed up this time and didn't seem to want to admit it. But, that is another story.
Now that you have elaborated on what bothers you, I see a strong similarity with my (former) condition when I had low cortisol and was NOT adequately medicated: you snap at people quickly or you ACT before thinking through the situation.
If that is correct then you're possibly taking insufficient HC supplements as (relatively) small things like that set you off and with the right doses those things would not set you off.
your comment definitely gives me a little more hope.
When all this got started it was because I needed carpal tunnel surgery and the orthoped wanted to make sure that low thyroid or low B 12 were not causing it.
My thyroid was at the low end of normal, and he felt like it was too low---but no one noticed that my TSH was also at the low end of normal--in fact, they were the exact same number! I don't blame them for not suspecting a pituitary problem--I'm just glad he felt the thyroid was too low even though it was in the "normal" range.
I needed the carpal tunnel surgery regardless, both hands had scar tissue inside them---but testing my thyroid at least got me started with an endo.
Fast forward past two bad endos' to the doc I am seeing now. My cortisol blood work was iffy----blood serum was high, 24 hour urine was a little low. After I finally saw him, and he had physically examined me, he felt that my symptoms pointed to low cortisol.
I was given istructions, that as my natural thyroid was raised, I was to watch for fatigue, tiredness, irritability, etc.----especiallly in the afternoon. He said that as my metabolism was raised by the increased thyroid, that it would also raise the cortisol, but that the rising cortisol might not be ble to keep up with the rising metabolism. he said i might need to raise my cortisol level.
That was a long explaination to say that I think my cortisol needs to be raised. I did not feel any different after starting on 1 grain of natural thyroid, but within the first week of raising to 2 grains, i started to feel worse and have been getting the symptoms he described.------I'm glad you mentioned the part about snapping at people and ACTING (or speaking) before thinking things through--I seem to do this way too often.
I cannot talk to the doc until Monday, but he sent me an email and told me to make sure I knew my basil temp and my resting heart rate. The last two mornings my temp has been about 96.2---I'm not quite sure how to get my resting heart rate measured right--it is hard to feel every beat and count them right---is there a trick to it?
Now, if I can only figure out when to get my sex hormones tested, and get my DHEA levels raised back up to a normal level---maybe I'll get my sex life back---tell me there's some hope there!!
I was reading back over these posts and you mentioned something about the heart pounding for a long period of time and stress dosing because we can't raise our blood pressure--can you elaborate?
I have also read that low cortisol can cause shakiness---I know hyperhtyroid can cause it, too. I was getting times when my heart was pounding and i have never gotten over the shakes since I tried the last antidepressant I wil ever take. I think they were dropping my cortisol meds when this was going on.
I am wondering if it was the lower level of cortisol that was causing those symptoms and I was blaming it on the thyroid medication. I had lowered my thyroid dosage to an amount that would be sufficient for about a 3-4 year old child.
How do you know when you are on the right dosage and what is the best schedule to be taking it? I don't know what I should be expecting to feel. My original endo told me that as soon as i took my first HC pill I would probably start feeling better---but I never felt better the whole time she was treating me---but she never had me on an adequate dose of thyroid.
Rumpled, when you said we will always be weepy--are you meaning because we are women, because we are nearing or past menopaus, or because people with cortisol issues are going to just always be that way because it is hard to regulate something artificially that our body should be regulating on it's own?
I read an article about the long acting cortisol that you mentioned--I'd sure like to get my hands on that!!
When my BP is low or heart rate is high, I go for salt. Salt tabs, tomato juice etc. I only stress dose for illness etc. Low BP can be a signal for a crisis - so I may need to do both - but I have to see if it is ONLY heart rate, or other things going on - and go from there.
I said the weepy thing as I don't know how to get away from it - I know other people in our shoes that struggle with it too - so I just think it is hormones. Gender - not sure.
As for knowing the right dosage - I know as I don't have a crisis every week, I can do a reasonable amount of activity and I don't get sick all the time.
Just to clarify, when I talked of snapping at people and ACTING (or speaking) before thinking things through (which you too exhibit) don't worry. When you'll get off the HC, you will return to your old self and you'll be more tuned into yourself so that you'll rarely snap at people of act without thinking.It is one year since I stopped HC and am functioning far better (cognitively speaking).
I cannot help you regarding her rate or thyroid issues. Perhaps rumpled can.
One more thing, which may help you when receiving blood test results.
I saw what was thought to be a highly regarded endo who looked at my blood test results and said "the key issues are all within the normal range' so you're ok".
I followed his instructions, stopped the HC and felt very bad.
I soon looked for an endo with more experience.
I then found a great endo who explained as follows" first, if one is near the top or the bottom of the normal range then in my eyes that person is UNWELL. Especially if 2 or more tests confirm such borderline results. Critical of course if to see blood tests results in the context of the patient's history and other current symptoms"
Bottom line: you want a great endo and not an ortho to interpret your results.
Regarding your sex life, if it is not what it was, then the reason can be either physiological or pyschological. In many people their sex hormone tests are normal but, as was the case with me - a guy but it shouldn't differ for women - the stress (no pun intended) of AI coupled with poorly interpreted medical results threw my libido out the window while my testosterone levels were smack bang in the middle of the normal range.
The sex drive returned soon after I finished the HC to the level it was pre HC
My ortho doesn't normally do my blood work---he was only running the thyroid test before he did carpal tunnel surgery on me because he wanted to be sure I really had carpal tunnel---he knew that low thyroid could cause carpal tunnel symptoms. I was just lucky that he felt like a level near the bottom of "normal" was too low. he actually told me to take the blood test to whoever normally treated my thyroid. It happened to be my obgyn. I had not been diagnosed as low thyroid---i had nodules and was put on synthroid for thyroid suppression therapy by our local surgeon. The surgeon had moved, so my obgyn and family doc were both supposed to know how to follow through with my thyroid suppression therapy.
My obgyn looked at my test and told me it was normal---because it was within the "normal" lab range. i told him the ortho thought it was too low and was causing carpal tunnel---so my obgyn got me into an endo pretty quick. (near end of year kind of thing).
Both endos i have seen seemed to look at the lab ranges more than me as a person, although one of them did say that she treated the symptoms and not the blood test---but she was so unorganized and made so many mistakes and never even raised my armour above 1/2 grain.
The doc I am seeing now does not believe that lab ranges can be trusted---he says they are taken from a basically sick population full of undiagnosed problems. His goal is to try and balance my entire endocrine system by getting my lab values to levels that would be the levels for optimal health. He also told me unless I am low in something, I do not need to supplement it. I am on several specific vitamin and mineral supplements along with the thyroid and cortef.
He ran a whole bunch of blood work before I even saw him---but because the cortisol levels were iffy---he waited until he could clinically evaluate me before making a decision on whether or not I needed to be on HC---plus, he had to see me before he could treat me. I feel like he knows more about the endocrine system than either of the endos i saw---but he left thoracic surgery to study the endocrine system and how to properly balance it.
As far as the sex life, i am sure that stress is playing a role in it, but I also think there is a physical reason. Over the last 4-5 years it has come and gone. The first time it "went" my testosterone levels were flagged low---even for a woman. My DHEA was also low--there were some other things tested that were off--but no other sex hormones were off---except the sex hormone binding globuline was high. Aldosterone was never tested----does it come in to play in this? I know it is on the list of things waiting to be tested by the new doc.
Once my DHEA levels and my testosterone levels were back to normal levels---my sex life was alot closer to normal. I guess she had probably gotten most things back to the "normal lab" ranges. Interestingly, if i remember right, my testosterone levels took the longest to return to a normal level---maybe i had trouble getting the right dosage for a woman--she tried to give me a mans dosage that was going to cost a fortune--my obgyn called in the right dosage to a compounding pharmacy for about 10 bucks.
I am waiting to get my hormone levels tested---he is also going to test my ACTH plasma levels. Hopefully that should help me know if being on HC is going to be a permanent thing for me or not. In the past, they were really low.
Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right?
I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back.
My husband has been a pretty good sport, but because he has issues about being the initiator, I have to initiate most of our physical relationship---and when i have no drive for it, I have to make a real effort to remember to make sure things happen, or he gets kind of cranky.
Now, tell me, from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?? In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down. Does any of this make sence?
Now that I don't have the drive, and my body doesn't respond a whole lot--- I honestly try to make the effort to see that we keep that part of our marriage going, because I think it is an important part of a marriage relationship, and we seem to get along better if I make sure something happens. it's not like it is an unpleasant thing for me to do--it just isn't an exciting thing for me to do.
Sorry this was so long--i'm just trying to make sence of my life and trying to figure out how to know what kind of "normal" I can expect. If I am never able to get off the cortef--does that mean I am likely to be a little more emotionally sensitive forever? It sounds like I may have to learn to make it a habit to ALWAYS think before I speak or act.
I can't believe I just spilled my guts like this---and to a man that i don't even know---but i guess that's why we have these kind of boards---sometimes it is easier to talk to a stranger that we don't have to run into on the street and be embarrassed because they know everything we are struggling with!!
1. I am glad that are you confident with the one endo who knows what he is talking about and is keen to address you symptoms and not your blood work results if the two conflict with each other. This is the M.O. of the best neurosurgeons in my experience;
2. Adolsterone - I have no idea of its importance with respect to sex drive/hormones but recall that I was testted for that and my results were well within the "normal" range;
3. You ask "from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?". There are multiple answers. First, a man's fear or impaired performance has a lot to do with his interest in sex (acts or thoughts) being raised by if he feels that he will not perform well, he will not seek it BUT will pray his partner would be the one to consciously avoid having sex thereby allowing him to (falsely) rant that he is being denied sex! Think of it like a guy wanting to ask out the hottest girl to a dance but fearful she will turn him down. To him, the best of all possibilities is that she hints to him that she is not interested AFTER he has decided for himself that he has no balls to ask her out.
You say that "In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down".
First, regardless of any illness a person has, sex drive falls as we age. The velocity of the fall differs from person to person.
Second, his comment that he really DID want to have sex with you then is to be a load of BS. If he really wanted sex then, why did he turn YOU down? A guy would ONLY turn a woman down if "if he was not in the mood". And occasionally not being in the mood is normal. But if a person OFTEN is not in the mood, a good first guess is that the guy may performance anxiety.
You ask " Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right? "
I cannot separate my stress levels affecting all my moods (sex, people skills etc) from the HC I took to correct it. The two are linked intimately. I weaned off the HC when my cortisol levels improved to be within the normal range, admittedly they do fluctuate but as I was told: many fluctuations are ok, it is when the PM level is greater than the AM level that you should be worried.
And yes, post weaning the sex drive improved, like ALL things improved when I got off the medication. Perhaps it was the stress that affected my drive. Perhaps it was the HC passing through me. I dont know. But I know that every month I travel away from the date I stopped the HC (exactly 1 yr ago) I feel better.
Out of interest, have you checked your Vit B6 and B12? I ask because I just started taking B6 supplements (for an unrelated neurological problem) and while it does not help with THAT problem, I do see a rise in how well I feel. Maybe you should try that too?
4. You mention you may have carpal tunnel. Have you ahd a nerve conduction study performed? Have you had a MRI or u/s to confirm it is carpal tunnel?
5. You say "I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back". I am not a physician but I do know that in the case of a guy with normal values of testosterone (I am not sure if this applies only to naturally normal values or also to normal values achieved through meds) meds like Levitra and Viagra help in the performance of a sexual act.
6. Pls underatnd that "low libido" and "low" levels of hormones are different animals. It is possible to have high levels of the hormones (but well within the normal range) and to have very low libido.
7. You are (naturally) worried about how you and your husband respond to each other emotionally and physically.
You can tell him from me that until you are off the HC (and for a while afterwards) while you may be very pleasant at times to him and to others, you are NOT the same person you were before and you need latitude to exhibit behaviour that is out of character with how you have related to in the past.
If he values the marriage the will give you all the slack you need. I recovered in a large part due to being single and not having to make excuses to anyone; not being dependent on anyone and not having to answer to anyone.
You must make it clear to him that you will return to good health far far quicker if he lays off; allows you to be erratic; allows you to be selfish and allows you to be sick and not pretend you're Supergirl.
I have definitely been snippy when I don't have enough HC in me, but "enough" is turning out to be 30-40mg a day when I'm prescribed 15mg. I haven't written that email to my endo yet about how I need help with my symptoms before January, I'm not sure what to say.
I'm still having wobbliness/confusion/fogginess, muscle weakness, abdominal pain, emotional instability, and what seems to be a SLOW heartrate in between HC doses. I got a coupon for a bp cuff and intend to buy one this coming month.
I am still in the process of moving house, getting over infections, and having a near-constant panic attack unless I have enough (too much?) hydrocortisone and, frequently, Klonopin in me.
Thank you for your detailed answer to my questions!!! I guess why my husband has issues initiating sex will always be a mystery to me---because I really don't think he has performance anxiety. Actually, he is extremely considerate when it comes to our physical relationship---and always has been---at least when we finally get around to actually having intimate relations---it's the getting to them, that has been the issue.
We had actually reached a point in our relationship, probably about 11 years ago where everything seemed to be flowing and working pretty well between us. Our physical drives were closely matched, we didn't seem to argue as much, If he said something to hurt my feelings, I was able to let it roll off my back alot easier and let go of it a lot quicker.
I was in the early days of whatever my health issues are, so I took alot less pain medication---most of my children were home, and my parents and family still lived nearby. Then, all hell seemed to break loose, starting with a totally unexpected pregnancy when I was 40 and a baby with health issues, children with health and mental issues, etc,. etc. In the middle of all this we moved----and i think that was the final breaking point for me physically and mentally-----I lost a ton of weight---people actually thought I had an eating disorder, I got so thin.
We have continued to have one problem aftr another since then----it is almost embarrassing----so many things have happened to our family it would sound like I was making them up if I told them all to you.
Originally I was able to deal alot better with most of the issues--but i finally reached a breaking point---and have never been able to pull myself out of it----but I do have some days when I am better than others.
Reminding me that it is normal for drive to drop with age was helpful, too, I also figured out a couple of other things that might be adding to the problem and took steps to work on them--hopefully things will start looking up in that area---but i am probably always going to have to be the initiator---at least the majority of the time. I guesss If i just learn to accept it--it really isn't that big of a deal----definitely not something to damage a marriage over.
I have tried to tell my husband that I need him to learn to be more tolerant with me while i work these health issues out----he says he thinks things will get better when I am better---but I remind him there are no guarantees that I will get better than i am right now. he says if I don't, then he will learn to deal with it---He needs to learn to deal with it now.
I think he is dealing with some issues of his own. We have just switched him to natural thyroid--he has not had the drive and energy to do things like he used to and he is much more irritable than he used to be. He will always be a little rough around the edges--but i can live with that.
I think I need to take the personal responsability to make myself take the time to think before I speak and act---because i know i have a problem in that area----i need to not use it as a catch-all excuse--but I do need to allow myself some leeway.
I don't know if my B6 has ever been tested, but my B12 is always high. i did have a nerve conduction test done and it was borderline---the doc figured I would eventually have to have the surgery. i put it off for about a year after the study, but my hands were cramping up on me too much and I couldn't even hold a book without pain. i had surgery on both wrists about 4 years ago. I definitely needed it done. I've played the piano for about 38 years and i crochet alot.
I have also told him that i would probably do alot better if I got alot more positive from him than negative. He agreed that that would probably help. i do think I am seeing some efforts on his part---after reading all of your response, I think I need to put in a bit more effort on MY part.
Thanks for taking the time to address each of my concerns. i don't know if I will get off of the cortisol---so I really hope that I can get the dosage right and the timing right---i think that should help. I think my dosage is not high enough---i noticed more problems when I raised my thyroid meds------the doc told me to watch for problems when the dosage was raised.
Unbekannt, your response seems to verify what i am thinking about my cortisol dosage not being high enough.
I have seen various counselors since I was 17. My husband and I have been to counseling more than once---our options were not very good and it did not do us a lot of good.
My husband refuses to go to counseling again. However, he IS willing to visit with a church leader that he respects----as long as we do not meet together at the same time with him.( I had a tendency to get so angry by the time we finally saw someone that i would really let him have it--plus, he felt like he was being "tattled on"---guess he didn't want people to know what he was doing and saying to me).
Now that things are out in the open---and he has admitted to treating me very poorly, there is nothing to hide---and nothing to "tattle" on---so things can be talked about a little easier, i think.
Because the leader he is willing to talk to is not the usual person our church would have us meet with, i may have to pull a few strings to get this ok'd. If this leader would be willing to follow through with visiting with my husband on a fairly regular basis---say every 2-3 weeks, even if only for about 15 minutes, I really feeel like it would do alot of good. It would even be more helpful if he was willing to meet with me occasionally to make sure he is getting the issues from both points of view.
This is a person we both know and trust--both as a church leader and as a friend. He is not a professional counselor, but I am sure he has quite a bit of experience dealing with couples that are trying to work through various issues.
I believe in my husband, and I have seen him at his best--i know what he is capable of. I think he could be capable, again, of being the good, kind man that I met and fell in love with. i just think that he got off track somewhere---and when i tried to get help----I could not get anyone to listen and follow through---so things just escalated until my children stepped in and "reported" to a church leader the level of difficulty that i was having to deal with and how my husband was behaving. Fortunately, it stopped things from getting any worse. But, unfortunately, the church leader that my children talked to has not followed through very well--and he only talked to me twice, early on----and has never visited with me again.
My husband just needs someone to follow through with him and visit with him on a fairly regular basis to help him stay on track. My son had a good way of putting it--he said it is kind of like he needs a sponsor---like people who are in AA have--someone to check in with on a regular basis or when they are having trouble.
I honestly think that my husband would be able to keep himself on the "high road" if he had to be accountable to someone for his actions and words, and how he is treating his wife and family. Also, this is something he is WILLING to do---and the leader that we both trust actually VOLUNTEERED to visit with my husband on a regular basis when I went and visited him (at work) because I didn't know what to do to get help.
It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend.
I could probably use some personal counseling from a professional again, someday---i really have a hard time adjusting to changes---and we have had so many changes in our lives over the last 6 years. I may try it again eventually--but not right now.
As for the carpal tunnel------
Both of my hands were cramping up so bad on me that I could not even hold a newspaper or a book for very long. I would get some numbness in my fingers, also---i still get some of that---but it is coming from my neck. During one of my pregnancies it got really bad. I was retaining more water than usual, and I woke up one morning and my wrists and hands hurt horribly--they recommended splints. It took about a month after I had my baby for the problems to go away.
It helped with most of the cramping--but i still occasionally get pain in my wrists and some cramping in my hands---seems to be kind of weather related. Both hands had scar tissue inside of them---i did not know that carpal tunnel could cause enough scar tissue inside of your hand. I have had symptoms of wrist problems for alot of years----probably going back to almost 23 years ago.
What do you feel caused you to need surgery on your wrist---I assume it was carpal tunnel surgery?
My husband has had carpal tunnel surgery on one wrist---but he is in tires, and it is a pretty common thing for a tire man to end up having carpal tunnel surgery.
You mention a chap that is not a counselor but whose judgement you and your husband respect. That is good. By all means see him. But on a regular basis. There is no point seeing someone like that every month or every 6 weeks. You need continuous interaction, say weekly or fortnightly.
You keep saying you want to work through your issues with your husband.Is he as dedicated to resolving the problems as you are? It seems to me that you are doing ALL the heavy lifting regarding resolving the emotional issues in your marriage. You already confessed to taking the lead in sex. I wonder if you wouldnt be better off with a guy who was committed to you as you are to him (or the marriage?)
You say "I believe in my husband, and I have seen him at his best--i know what he is capable of". You know what he WAS capable of. People change.
If you agree to your husband meeting someone then he MUST agree to have you there as well. There is NO point for him to be counseled n you absence as he could easily misstate the true relations of your marriage and then be recommended a path that is SO WRONG as it assumes he was telling the truth.
You are talking of your MARRIAGE. This is an enterprise involving more than your husband. Doesnt he "get" that? Your son's analogy is not a good one. Alcoholics have a problem that involves them and their liquor. BOTH are talked about in AA meetings. I am sure he talks about you when he discusses the marriage BUT if you are not there, how does anyone know if he is talking the truth or talking what he feels?
You say and I agree with
"It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend".
You mention "carpal tunnel". Do you feel you have regained all your wrist functions after surgery? Mine was a tumor and not carpal tunnel. The docs have no idea why I had it and are still investigating the relationship to the brain tumor.
I think I have gained all my wrist function, but I think my hands are a lot weaker. i play the piano at church and seem to mess up--but i rarely play anymore--i think I am just out of practice. My handwriting seems to be a little sloppier since the surgery. I still occasionally get some hand cramping, too---i think it is probably weather related.
I think my husband is dedicated to staying in the marriage and i think he wants it to be better, too----i think that maybe i just NEED more out of the relationship than he does---does that make sense? I need conversation and to be able to talk about problems---even if it isn't the most convenient time---but I also need to not hit him with things the moment he walks in the door.
Funny thing about the person I said I felt we could visit with. We were talking about it the other day, and somehow it came up who he thought could help us--and he mentioned the very person I was thinking about---and the man has already volunteered to visit with my husband every couple of weeks for about 15 minutes. i know that is not a lot of time, but I think it would be a start that could build into something more. My husband really likes him and trusts him--and his wife and I have been friends for years.
I think we need to visit together, also, but I think my husband needs a little time by himself first, and to gain some trust in me again. However, I think this person should also visit with me alone occasionally during the period of time he is visiting with my husband alone---he needs to hear both sides.
I did have a tendency to get really angry when we met together with people before, and he always felt "tattled" on. He probably felt like he was being attacked----and in a way, I probably was attacking everything i felt like he had said and done wrong--it was easier to do it because there was another person there, and he wasn't going to start shouting obscenities at me or anything---so I have to take some of the blame for him not wanting to meet with someone at the same time as me.
Now that he has come clean with what he has done and said, there is nothing to hide---and I can see the importance of me not getting angry---and learning to take my turn to speak---instead of interrupting my husband while he is talking, because I feel he isn't telling things right.
I should be able to wait a few minutes and take my turn to speak if I feel like he isn't telling things like they really are.
I agree with you that people change---I certainly have. I am not able to do a lot of the things that I used to do---but I am taking steps to try and get myself well. i think my husband is depressed--he knows he is depressed---but he really isn't doing anything to actively try and help it---he needs to take responsibility for that.
I definitely agree that we need to meet together with this leader at some point. This is what has really bothered me about the way things have been done so far. Not just that we were not meeting with someone at the same time---but that the person meeting with my husband only visited with me twice, and then never visited with me again----and he has not even been consistent with visiting with my husband.
I think short regular visits with my husband and occasional visits with me could lead to us being able to meet together with this leader and friend.
I do not think this is the best outcome from surgery. Have you seen a hand therapist who can show you exercises to improve your hand function?
You say: " i think that maybe i just NEED more out of the relationship than he does---does that make sense?"
Yes it makes PERFECT sense. I am single and know some friends who entered marriage wanting the same things but over time developed different needs. THIS is common. As I am not a counselor I don't know how to deal with this. But it should be addressed.
You say "... I think it would be a start that could build into something more" Agreed. A start is good. ANY start is good.
You say "I think we need to visit together, also, but I think my husband needs a little time by himself first, and to gain some trust in me again".
Perhaps, but you should set a time line by when certain things are accomplished such as when you're both attending counseling together and by when results from those counseling sessions are realized or begun to be realized.
You say "However, I think this person (let's call him the SOUNDING BOARD) should also visit with me alone occasionally during the period of time he is visiting with my husband alone---he needs to hear both sides".
Definitely! Meeting separately initially is a great idea.
You say "I should be able to wait a few minutes and take my turn to speak if I feel like he isn't telling things like they really are".
Tell me is this quick to jump and voice your opinion something new or have you always behaved this way?
You say " husband is depressed---but he really isn't doing anything to actively try and help it---he needs to take responsibility for that".
Without treatment I cannot see how anyone can triumph over depression. I have 48yo friend who is depressed over a guy who is not interested in her. She has been like this for 3 yrs. This has resulted in her gaining weight, losing friends and losing her job and STILL she doesn't get it! get help I shout to her, but I may as well talk to a brick wall!
You say "I think short regular visits with my husband and occasional visits with me could lead to us being able to meet together with this leader and friend."
Yes maybe, try for regular visits of yr husband and the Sounding Board"; of you and the hearing board and BOTH YOU AND HUSBAND and the Sounding Board.
Before visiting him, ideally prepare a list of issues (make 2 copies one for you and one for the SOUNDING Board) to talk about in advance of meeting him. The list should be divided along two lines:
Issues relating to me and my illness; and
Issues relating to me and my husband
The best that can happen is that you will leave a copy with the Sounding Board and he will raise those topics with yr husband when they meet.
You've never been married---and you are this insightful????? What profession are you in--or are you just a very observant people watcher?
As far as my hands being weaker--they were losing strength before I had the surgery and i have never done any exercises to strengthen them. Probably if i would just take some time to play the piano every day I could kill two birds with one stone---I'd build up strength back in my hands--and I'd be able to play like I could when I was younger--and I wouldn't blunder through the hymns at church!! I know if carpal tunnel goes on long enough that you can get permanent nerve damage and never get some of the strength back---but i don't think I got to that point.
I used to be able to open just about any sealed jar there was----i can't do that anymore---time for the rubber circles!!LOL!! Maybe ALOT weaker is too strong--they are weaker, but it is not a problem for me---my handwriting was crappy before---so that's not a major loss to have it a little worse.
As far as different needs in a marriage----glad to hear you say that is a common thing to happen over time. My hubby and I have both discussed that our most important goal should be to be more worried about each others' happiness than we are about our own----it just isn't as easy to put it into practice s it is to say it.. Also, there have been alot of changes in my family lately---and I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be.
However, I am making efforts to work on my health, which includes the anxiety and depression--hopefully the neediness will lessen over time.
I think the timeline is a good idea---but I think it would be better to wait a little to suggest it, and I think it would be better if the sounding board were the one to suggest it.
I don't know if my jumping in to voice my opinion is new or not. I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I jumped in angrily, when it was supposed to be his turn to speak that was the final straw.
One thing I do, that my husband often interprets as me interupting him, is that when he takes a break in a sentence, I will sometimes try and ask him a question. he yells and says I'm interrupting, when actually I am just trying to clarify something and make sure I am following whatever he is telling me. I explained this to him recently---I think he is starting to get it.
I like the idea of making a list of issues. The sounding board has a wife that is also starting to have some health issues---and I know in the past, when he and my husband would visit, the sounding board would mention things that his own wife did that bothered him---I think it made my husband realize that other people have issues that they don't always agree on in their marriages, too----hopefully, if they continue to talk that openly, he will also realize that differences and disagreements don't have to lead to excessive anger.
We were experimenting with something last night that can indicate that a person might be anemic---and it looks like my hubby might be anemic---this could help explain his lack of wanting to do anything but get in bed, eat, and watch TV when he gets home. So---I'm hoping that with some counseling from a good sounding board, some work on his thyroid, getting his iron up---and hopefully getting him to address his depression---maybe things will improve.
Actually, we've been doing ok recently, I never know when things are going to go sour unexpectantly, but they are not as bad when they do as they used to be.
Also, he has actually apologized to me a couple of times over the last several weeks--real apologies--not dripping with sorrow, but not "i'm sorry, but this is why you deserved it", either. This is real progress for him!!
Thanks again for your suggestions!
What is happening with your wrist that has you concerned? I had my surgeries done 6 weeks apart. our orthoped did such a good job, you can't even tell i had surgery on my left wrist--the scar is right inside one of the normal folds. On my right wrist you can see part of the tiny scar if you look for it, but it also has just a little adhesion that will pull down if you pull the skin to the side.
I think that any wrist pain and cramping that I get now and then is related to whatever is going on with me now and not with carpal tunnel.
Let's see.... you ask "what profession are you in--or are you just a very observant people watcher?" I think I am the latter. I am an economist by training but know many dysfunctional marriages, so I have (to a degree) learned what works in a marriage and what doesn't. I also saw a psychologist years ago when I was dating a narcisstic woman.
As to your hands, you say that problems predated the surgery. Ok then, that means any post surgical problems are in part not related to carpal tunnel.
You mention you cannot open sealed jars. Do you have weaknesses in both hands or feet? I ask because if yes, then something else needs to be investigated as the problem.
You say "I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be". Have you taken meds for this?
You say "I don't know if my jumping in to voice my opinion is new or not. I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I jumped in angrily, when it was supposed to be his turn to speak that was the final straw". I was the same. I learned over time two things that make life more pleasurable. First, you do not always have to talk. Sometimes it's best to stay quiet (even if it feels unnatural). Second, I learned patience. Learn
to talk when it is your turn. Wit for your turn. Speak briefly and softly. It works for the most successful politicians!
You talk about your husband thinking you are interrupting. I suggest
you ask that whenever he speaks to make it obvious when he is done so that is your cue to ask a question or seek clarification.
You say your husband may be anemic. Given the symptoms you list I suggest he get tested (blood work) BUT those symptoms can also signify depression (mild or medium) and for that a psychiatrist is needed for a diagnosis.
For many years I was like that. work, eat, sleep, stay home and preferred not to go out. I was diagnosed with very mild depression, changed jobs and improved. The job I had made me stale, angry and frustrated and this carried over into every aspect of my life. Maybe yr husband is similar?
You ask 'What is happening with your wrist that has you concerned'? Well I had a tumor removed but now it hurts to type more than a few lines.
The pain is only at the fingertips and an xray showed nothing.
I wonder if an mri will show anything. I hope it is not more serious ie. related to the brain because that can take a while to diagnose and who knows what if anything can be done to treat that.
The scar you mention on the right wrist is like mine, small.
I think any problems ihave nwo with wrist pain and cramping are most likely related to the generalized pain issue i have---we've been calling it fibromyalgia for years--but i don't have an official diagnosis--only chronic pain. I think my wrists tend to flare up with weather changes just like arthritis does or old wounds such as a broken bone from your childhood starts to ache when you're 50. i broke my tailbone having one of my kids and it used to ache in the winter sometimes for several years after i had her (rarely hurts me now) but, I always thought it was funny when it hurt---the idea of having arthritis in your bum iwas just funny to me---I know, i have a weird sence of humor.
My husband came out of a crappymarriage--where he and his ex were both self-centered---he was well aware of the mistakes he made---he told me about the mistakes he made and what he thought it took to make a good marriage. AND, in the early part of our marriage he actually did them--he wasn't perfect of course, but he put in the effort---so i know he knows what it takes to make a good marriage--just like you have seen dysfunctional marriages, he knew he had screwed his marriage up and didn't want to do it again.
I don't think my weakness is excessive in my hands--and there is none in my feet. I probably had stronger hands than most before the carpal tunnel---i could