Yes, I broke down and have taken the prescribed HC for the past 2 days. Guessing it must not be a high enough dose, but not sure. I was sick and tired of being sick and tired yet I have felt worse the past two days since taking it. 5mg when I get up and 2.5 at lunch. I have had a very noticeable change, as in way more tired and weak...just exhausted. I didn't even think i could feel worse than i did.
Also, it seems I have been having "spasms" or twitches somewhere around where my adams apple is, which is worrying me and has only happened since taking the HC. Any thoughts would be much appreciated.
Hi, I am an ex patient who was on HC for 18 mths and now thank goodness I am off the stuff.
I make two observations based on your comment: (1) if you are still exhausted after taking 7.5 mg HC then you may need more HC and (2) never did I have any spasms while on HC,
Let me elaborate.
See a good endocrinologist before altering (lowering or raising) the doses.In your case you may want to raise it. But before you see the endo you can safely change the time you take the doses and their size. So immediately I would change from 5mg when waking and 2.5 at lunch to 3 mg on waking 2.5 at lunch and 2 at 4pm. That way you are not changing the size of the daily dose. The fact that you are taking the same total per day but different times will not harm you.
As to adam's apple spasm...there are many reasons for this. But I did hear that when one is stressed, such spasms can be felt more. And the fact that you are exhausted and perhaps under medicated with HC indicates that you are stressed and the stress is not adequately controlled.
1. Book a visit to the endo say in a week
2. Today change the dose times as I suggest above
3. If you feel better (less tired) with the new dose times then GREAT.
4. If the new dose times eliminate or reduce the adam's apple pain...then WONDERFUL.
If you are sick, you may need more. You may need more on the days you don't feel well, then taper back down when you feel better. It is called stress dosing. The amount you increase can be a tiny amount or it can double or triple depending on what is going on.
There is some guidance in the health pages, but your real guidance should be your doctor. As well, increasing sodium and fluids should help.
I am not sure the spasms are related as well. It could be a tic, or something else entirely. It can be also vitamin or mineral related too.
If you have AI, one never is off steroids. You need them for life. You may also need other meds like florinef to hold sodium.
Thanks to you both for taking the time to respond to my problem! I had really looked forward to possibly feeling a bit better and it went the other way.
LowCortisol, I will try that- thanks so much :)
As far as getting into an endo in a week....i have waited a week for one to call me back, hasnt happened yet. I had forgotten, i had made an appt. with a friends doctor, a DO, but that was about my thyroid. That appt is this week, but i don't know if i can go through another disappointment. Not to mention the money i have invested in current doc...i want answers from her as well.
The doctor who prescribed the HC also prescribed Cytomel for me to go on a T3 only protocol for a high reverse t3 and i insisted on tests before starting and suddenly my RT3 is normal--she hasn't addressed that at all and not even sure if she is going to. When she prescribed these things, she said "talk to you in 3 months, unless anything goes wrong" no talk of adjusting etc.
I have suspected adrenal problems for about 3 years, it took me that long to find someone to diagnose it. Been to over 13 doctors this past year and most tried to give me antidepressants- freak out about my suppressed TSH (but not find out WHY it is) almost all of them have done nothing for me. I finally get diagnosed yet I have to wonder if this dr. even knows what she is doing.
In other words, it doesnt appear i have anyone to see me through this. It took me 4 months to get into an endo before and got nowhere.
I should have used a different term than "sick and tired" as i have mostly been tired. Suffered from a string of migraines over the winter and recently had a staph infection from a boil because i went hypo listening to endos and lowering thyroid dose..but that is the extent of my being sick. Seems i need a stress dose when i go to see htese doctors, they have all made me much worse by being so incompetent.
Thank you for your insight(s)...i will split the dose of HC differently and do some sea salt today. Sorry for the rant. This has been tough. I used up all my energy for nothing, unfortunately. It really helps to have input and know someone out there wants to help :)
Was just reading some things also....I take Xanax at bedtime....and had asked current doctor to test for Lyme disease as I do think it is possible but she asked me to hold off. Found this online on a page with normally good info, what do you think about this?
"Hydrocortisone supplementation does not seem to work as it should when one is on other pharmaceutical drugs like benzodiazepenes, or any medication that treats anxiety and depression. These drugs probably work at some level on the HPA axis and cortisol levels, creating unintended, conflicting reactions.
Also, if Lyme disease or some other underlying medical condition is present, taking hydrocortisone can exacerbate the condition because of its suppressive effect on the immune system. Hydrocortisone treatment should not be entered into lightly. Some have ended up worse than before they started any treatment."
Talk to a pharmacist. There is a difference between immuno-suppressive doses and replacement doses and how it acts on the body. The replacement dose should not be as suppressive, but I know I am immuno-compromised just from no adrenals and other auto-immune disorders.
I take my list of meds in and get a professional opinion - you should too!
I had a sit-down with my pharmacist over a week ago and it did make me feel better about it all. Was also surprised the t3-only protocol didnt freak her out.
Then I was reading that if you don't take enough or if you take too much, you can feel worse and i have been thinking that 7.5 HC per day is kind of a small dose.
The thing is, this doctor told me to do these perscriptions and she'd talk to me in 3 months, unless i had a problem- which tells me she has no intention of monitoring this. I think you were right about another doc, but i spent a lot of money on this one....i don't appear to NEED the t3-only protocol now as my RT3 dropped mysteriously, and she hasnt said a word to not do it, or to retest to be sure there wasnt a mistake. i have had it with doctors!
So if 7.5 is a dose that will help me, I'll do it. LowCortisol: i split the dose smaller yesterday and NO spasms, althugh my throat felt tight, so thanks!
ps...just realized i feel much better today. the endo says dont take the HC and on day 4 of taking it, i feel better. The post above, i had just gotten up and didnt feel great then. Talked to the endo, got a bit worked up but feel more energetic rather than feeling like crashing....go figure.
Ok, so. This doc (NOT the endo from other thread!) put me on 7.5mg HC with no orders to raise or montitor as well as a T3-only protocol to take care of my high Reverse T3 thyroid level....only, I tested before doing all of the above and the thyroid level came out normal for the 1st time in a year. I called and emailed this doctor for past week. nothing. nothing but long talks and promises from her receptionist.
I also asked in the emails about taking the HC after just being on Doxy for a staph infection....nothing. Now the infection is back. I had to go to yet ANOTHER doctor to get bloodwork order to retest thyroid. After a 2 hour drive and more money spent, i get home to an email from the HC doc:
Please see attached labs. I thought that we were also doing aldosterone
and renin (although I have never been taught how to use those in any of
my training.). Where do things stand for you? What thyroid hormone and
dose, if any, have you started?
- Dr. @#$$$
With the thyroid level as iw was last week, there would be no need for the t3-only protocol. i was waiting on word from her to re-test!!!! I was waiting to hear back about increases/doseage of HC.
Another one bites the dust? What doctor treats adrenals and says "never been taught how to use those in my training" about aldosterone. AND thinks we were checking that and weren't? I'm not depressed, I'm FRUSTRATED!!! lol, can you tell?
...also, my pharmacist was positive about HC but saying that was a safe dose, no bad effects etc but didnt seem to think it was TOO low. God, I thought I was finally home free but i am really just starting!!
also...one more thing. If i am not mistaken, not having enough aldosterone would cause higher levels of potassium, right?
I have bottomed out K and Na levels, and have for a long time. But mentioning it to that dr. sure showed me her hand.
I have low renin and low aldosterone. I take florinef - fludrocortisone.
The "norm" is that sodium drops and potassium spikes. However, there are some of us that buck the norm - I am one and so when I get wonky, both my sodium and potassium bottom out. I know several like me so I am not alone.
In fact, some people with crisis have a RISE in blood pressure instead of a fall - so you have to know your body and your signs - basically changes - so you can figure out out to head it off before you get into trouble.
Your low level of HC is a less than normal replacement dose - I don't think most if any pharmacists will comment on dosages doctors give to a patient. They may to do corrections or clarifications when they speak to the doctor, but they don't know your history or anything so I don't think they would go against a doc - if that makes sense?
Really - the doc does not know renin and aldosterone! Pfffttt.
I now have an infected boil to deal with again and not sure if i should stop the HC or raise the dose.
Also positive i do not want to deal with someone who would treat adrenals and not know anything about aldosterone and renin, having said that and NOT having a doctor at all now, I don't know who on earth would prescribe HC for me in the future? I so don't know what to do!
Thank you so much for the hand-holding here, I really appreciate it
In general, if you need HC as a replacement, your cortisol needs increase when you are sick so one has to increase when ill.
Signs that are typical, but by no means comprehensive - are nausea, fatigue, headache, change in blood pressure, chills etc. For instance, when I get low, I get a bad headache, low blood pressure, confusion (which of course means I don't always THINK to take medication eek) and nausea. But people differ.
Fluids and salty stuff help too. Since you know you are low in K too - you can do what I do - tomato juice laced with salt - a quick hit in sodium and potassium and I can generally get out of trouble with that. Pickles help too.
I knew you said when sick a person needs to take more, but starting the HC made the boil come back and since I hadn't been on it but 4-5 days and i had thyroid tests coming up....AND that doctor does not seem to know what she is doing and would not get back to me about all of this...i stopped taking the HC.
I had taken 7.5mg for 3 days and then 5mg for 2 days...got freaked out by the boil and not having a doctor.
Thanks, but I'm not feeling better...I had started to but then the boil came back. I feel awful right now and probably didnt do the right thing with the HC (stop taking it) but I am in unfamiliar territory here. Once I figured out the doctor didn't even know if she checked my aldosterone and renin let alone that she wasn't trained for those things, it made me question everything.
I have a my ciradian clock is off so i am awake from around 2pm- 6am, give or take...I have had migraines at all times, even in my sleep. The last 2 were right before bed and right when I got up. I also have attacks that last a long time and have had peripheral vision wavy/flashy disturbances for almost 6 months.
I am now doing a lot of research so that I might have some intelligent conversations with you all here and get a better understanding of all of this. Thanks so much for your input.
I had an MRI recently, a neuro ordered it- he also ordered an EEG which I had last week. They said the MRI was normal (and I was even having a migraine during it). Is an MRI for pituitary any different than a "regular" one? Not sure if the neuro would have been looking at the pituitary....have gotten help from no one.
I could stand ot drink more water but considering how random these prolonged attacks are, it's hard to say- I haven't found the common thread really.
I will ask for the radiologists report....thanks for helping me brainstorm :)
Sorry I was not exact. Let me separate 2 tasks for you if I may.
What you need first is to exclude dehydration as a cause for headaches.
Try drinking water, say 1-2 cups a couple of hours before bedtime. And drink 8 glasses in the day of non caffeinated fluids.
Give yourself 4 days to see if this makes any change in your symptoms.
Note I was told some time ago of a strong link between vision and hydration. So don't think that dehydration only shows itself in thirst or headaches. Vision too is impacted.
Assuming for 4 days you drink adequately, if you still have the headaches especially in the morning then I advise you have a Pituitary Protocol MRI. This is a MRI dedicated to the pituitary area.
The radiologist report you have now isn't worth a hill of beans as it is inexact. Also in my experience which involved meeting 4 neurosurgeons in Australia and 3 on the east cost of the USA, it is the neurosurgeon who BEST understands tumors. More so than the neurologist. That said the neurologist is the first port of call.
Interestingly, you say the headaches are random. In my experience they were anything but. They were routine. For one month I woke up with headaches that were strong enough to wake me but not strong enough to warrant pain killers. That said your visual disturbances need to be explained.
Ask a neurologist or an endo to send you for the Pituitary Protocol MRI. Then read the radiologist's report. If mention is made of tumor, THEN I would find the best neurologist in your neck of the woods for an advice.
If you suspect the problem lies with the pituitary then the point I was trying to make is that you need a MRI dedicated to imaging the pituitary and not the whole brain. The neurosurgeons I saw called it a Pituitary Protocol MRI but I now recall that others call it a Pituitary Routine MRI.
The key to any radiological image is its interpretation. Do not rely on the radiologist's report alone. Show the images to a neurologist without the attached report and let him or her come to a conclusion without any guidance from the radiologist.
The neuro had me do the EEG to see if I have a seisure disorder of some kind, for the peripheral vision situation. Maybe random was the wrong word to use, I seem to have periods of migraine attacks. I had a long one, Dec and Jan where I had them every day sometimes multiple times per day. Once that attack stopped, I still had what seems like an aura in my peripheral vision for months since. It isn't too noticable right now and now I have migraines every once in awhile- late night, mid day- in my sleep.
It seems I have run my course with doctors and i feel that until I can get back on my feet and get insurance, I will continue to get "brushed off" by doctors. Hard to do when you need them to get back on your feet in the first place. I have run out of options.
I can't even in good conscience continue with the doctor who prescribed the HC.
I will try to start drinking more water. I often think about it, but never do it. I will try and that may make a difference. A very simple thing but one we sometimes forget, so thank you for putting it out there for me.
1. List in a journal all symptoms you have; when you have them and their duration. This is very important as subtle differences in symptoms can lead to very different diagnoses.
2. I do not think your ill health can wait until you have insurance organised. In your place I would seek a hospital with a highly rated neuro dept. Top 15-20 in the country would be good enough. Ask them what their charge is with/without insurance. At the same time organise your insurance.
Also you may want to buy a book on the topic of "migraines and other headaches'. Such books will explain quite a few things and MAY indicate your headache is in fact TENSION or CLUSTER and not MIGRAINE.
I just saw 2 endos, 1 neuro, 1 MD, 1 Gyno, 1 Derm, 1 hip surgeon, 1 Opthamologist at the CLEVELAND CLINIC over the winter.
They were all too obsessed with my being on their financial assistance program and didn't bother to focus on what could really be happening. The neuro and eye doctor are the only ones who tried to investigate, and that was for the visual disturbances. Still no word on the EEG I had 2 weeks ago now.
I had to keep bugging them to get anything done---they all basically brushed me off. As you have noticed, these are not symptoms to take lightly, I know...I am simply out of options right now. That is one of the best hospitals in the country and when an endo seems more obsessed about the fact that you have insomnia and take a small amount of xanax to sleep than she is about your many symptoms....something is terribly wrong. This 1st endo didnt refer me to anyone but the sleep medicine folks...i had to make all the other appts and those really got me nowhere.
Thank you for trying to help. These doctors i spoke of above are about to be the end of me. (not to mention the 2 more dr's i have seen since)
i will call the neuro about the EEG and ask about my pituitary/MRI-can't hurt but i think the endos should have ordered that? i had sudden onset tinnitus along with that attack in Dec and have had that ever since as well. For some reason, no one wants to put in the time to help me, except of course online :)
You mention sleep doctors. Did they evaluate you for excessive or insufficient sleeping? Did you have a day sleep test? Did you have a night (MSLT) test?
I had both and was found to doze off for no reason.
I am no expert on EEGs but think can show seizure activity. If that is a big fat negative then you need to keep searching for an answer.
The Cleveland Clinic is a great facility. Are u talking about the Cleveland campus or the one in WPB, Florida? I was at WPB and while it looks fancy I would rather be ill in Ohio which I feel is where the better physicians are located.
Frankly in your shoes I would focus strongest on finding a neurologist I can trust. To him or her take the EEG scans, regardless of what they show, and have him refer you to a pituitary protocol MRI and any other test he suggests
Sleep - I take yr point, that is not an issue.
EEG - you say it was said to be normal. Unless you are convinced it is not, I would accept that diagnosis.
Sorry to hear you can't get the HC doc on the phone.Why can't you? Is it a matter of insurance or doesn't he have the right answers and is ashamed you are hinting this?
I can't advise how to get health insurance but what you need to do is focus on the 2 ppl most important to you: the endo who'll tell you how much HC to take and whether to take it at all AND the neurologist who will explain if there is anything suspicious going on in your head.
Thanks for all of your time and caring, both you and rumpled.
The doctor I had seen, that put me on the HC also put me on T3 only for a high RT3 (thyroid). I asked for testing before doing all of this to have a baseline. Surprisingly the RT3 came back normal for the 1st time in a year. She would not order a retest and was apparently ignoring all of my messages and emails AND talks with her assistant. I had to go to a whole other doctor to get ann order to retest the RT3 as i deeded to be sure.
During this time, I repeatedly asked about aldosterone and renin tests as well, i posted her answer on this forum, it basically said she didn't have info about aldosterone in her adrenal training....BUT she could put me on HC!! Also, I had no instructions on dosing beyond 7.5mg per day and nothing about stress dosing. Alos let them know the staph infection returned upon taking HC...and on and on....with nothing from the doctor after the little email.
I am telling you all of this because due to her negligent behaviour, I emailed her assistant about how i felt and that i had wasted my time and what little money i have on this not to mention the stress and the time i have lost (1st saw her 3 mnths ago) and told her i wanted my money back. This doctor completely flaked out on me in so many ways.
I had to call the office again today and finally got a call from the doctor. 1) she doesn't believe aldosterone is important 2) she does not have her patients stress dose 3)she was keeping me on 7.5mg HC for a few months 4)seemed oblivious about my RT3 being normal and thought we retested 5) has 2 different doses of T3 only med one on a written page and one on the script bottle (T3 only is dangerous btw and really don't need it now). There is so much more, but i will leave it at that. I am so DONE with doctors. I wanted to tell you about this so you'd get what happened. I am so sorry to have taken so much of your time-I appreciate the thought and caring i have received here. i cannot go on with this doctor and that leaves me with none. I will keep in mind all i have been told here.Thank you.
I now have a better understanding of your condition but am afraid that I can offer no insight or opinions into alderstone, T3 and RT3. Rumpled is wise and I urge you to follow what ever she advises.
You are DONE with doctors you say.
I understand exactly how you feel. I dealt with a few unskilled physicians who oversold their abilities. And trumpeted their reputations from the tree tops.
I was much worse for following their edicts. Lucky for me, I found good doctors soon thereafter. Much quicker than you have found.
All I can suggest you do between now and when you find a doctor you have confidence in is:
1. Stay on the HC AND
2. Take detailed notes on your daily symptoms - include their severity and the time of day when they occur. This is vital because specific conditions relate to particular symptoms AND the time of day you experience those symptoms. A good doctor will diagnose you correctly and treat you appropriately.
I hope that you can find good doctors. My tumor twin is in Ohio and has the same uh, opinion of the CC... it can take time to find decent doctors and eventually she did locally but for a while she did travel to PA.
Thank you. Even just knowing I am not alone in my opinion helps more than you know. I think my family thinks I am nuts, but this is really happening and can happen to anyone. This helps me know for myself that I am not crazy..lol.
I have been learning a lot about both the thyroid and now the adrenals.Taking a break from doctors for awhile as they were making me sicker. Thanks again, these forums are all we have sometimes to get the straight story-you helps so many people xx
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