i haven't been on in awhile--i had twin daughters get married--one the week before thanksgiving--the other the week before christmas--and a double reception between the two. then my husband had surgery on the tuesday before christmas. i have not been able to get back to the endocrinologist--things were just too hectic. they would only refill my hydrocortisone once until he saw me again--my local doc's nurse said they wouldn't fill it because they didn't fill it originally---so i have slowly just kept weaning myself off of the meds myself. i am down to 5 mgs every other day---i could probably quit at anytime now and be ok. i have one week left of my armour thyroid--don't know what to do about that. it was originally written out by the first endo i saw--not my family doc or the second endo--so no one is going to want to mess with that--not sure i want them to anyway. the newest endo i saw never took any blood work---i'd kind of like to start with a fresh slate as to what my body is actually doing if i see him again--not convinced i really want to.
i've been doing a little research and discovered that all my thyroid tests were done using the old lab guidelines---even though they were changed in 2002. also, the first endo started me on thyroid before checking my adrenals--i've learned this is not the right way to do it---no wonder i never felt any better with anything she did---she probably overwhelmed my adrenals and they never had a chance to catch up.
i am exhausted--only good for a couple of hours a day, my joints hurt, my muscles hurt i cry every day--basically i am a mess!! i'm so cold, too half the time and my feet feel like ice when i take my socks and slippers off. my hands are always cold when i get to church--and i play the piano for the first meeting. i'm just feeling frustrated with the doc i have to deal with.
my sister is dealing with a doc in conn. that seems to be doping her alot of good. i emailed him and asked for his articles--he replied within the hour and told me that all of my symptoms could very well be caused by thyroid and adrenal insufficiency--including my carpal tunnel. (i already knew that one) he told me someone to call that might be able to find me a doc who treats the same way he does closer to where i live--and if i can't get any help--he said he has a busy practice, but he would try and help me--but i'd have to get to connecticut at least once to see him---got to figure out how to come up with themoney for that one if needed.
just kind of venting today, i guess. i am exhausted all the time, have a horrible time finding a position to sleep in that doesn't make my left arm or fingers go numb--but sleeping on my right side makes my shoulder ache! i have no desire to do anything--not even cook or eat--but i've got to feed my kids!!
Congrats on the weddings. That would make anyone tired on top of the health issues.
I cannot tell if you are going to go to a MD or other doctor. It sounds like you have multiple issues, but I am not sure all of them are adrenal related. I know low cortisol can cause a lot of pain when the anti-inflammatory effects of the cortisol is low but the thyroid is a separate hormonal loop. It is effected when cortisol is high as high cortisol effects a lot of hormones but the absence of hormone...
"National Adrenal Diseases Foundation (NADF) does not recognize the term "adrenal fatigue" as a medical diagnosis. Per NADF Medical Director Paul Margulies, MD, FACP, FACE, printed in NADF News®, VOL. XX, No. 3 • 2005, page 6:
“Adrenal fatigue” is not a recognized medical diagnosis. Addison's disease is the correct term for primary adrenal insufficiency and is diagnosed with an abnormal lack of response to ACTH or Cortrosyn, elevated levels of ACTH, positive 21-OH antibodies (if autoimmune) and characteristic symptoms and physical findings. Clearly, people with Addison's disease must go through a period of relative loss of adrenal reserve before they present with the full set of abnormalities of total adrenal failure. During that phase there may be partial adrenal insufficiency that may give test results that are in between normal and classic Addison's. I would use the term early or partial adrenalinsufficiency not "adrenal fatigue". I think that term is used by people who propose that the adrenals "wear out" from various stresses and miss the point that Addison's disease is not caused by stress, but by specific injury from antibodies, hemorrhage, infections, tumors, or surgery."
I think you need to find the right testing and right doctor - and that can be difficult. I know I had a lot of problems too.
the diagnosis i was originally given was "secondary adrenal insufficiency". i was diagnosed after being given an ACTH stimulation test. My ACTH levels were low before she did the test.
8am level was 2.5--normal should have been about 6, i think. first draw was 9.something--second draw was 11.something.
what waqs kind of weird, was that at some point i felt like i wanted to change my dosage--can't remember why--but the doc wanted to run another stim test--they told me not to take my hydrocortisone for only the day before. seems to me that if i was on medication, a stim test would be pointless, even skipping a day of meds---or am i not understanding somethjing here. that stim test came out perfectly normal.
i never felt better while i was being treated. i am wondering if this is because the doctor did not check to see if i also had an adrenal problem---i understand approx. 50% of hypothyroids also have adrenal problems. i have read that if you treat the thyroid first when there is an adrenal insufficiency, that it can flood the body with thyroid, raise the metabolism--and then the adrenals can't keep up. i thought you were either wupposed to start the hydrocortisone first, or else start armour at a low dose and slowly raise it, giving each mnew dose a couple of weeks, until symptoms disappear. i'm also reading that the tests are just so unreliable that it is really more important to test the patient by symptoms rather than by the blood test.
the first endo i went to just did not give me need-to-knoe information, her office was run horribly, they didn't return calls, didn't get prescriptions right, etc. then she left to a different town, about the time i was trying to find a new endo.
the second endo looked at my thyroid with an ultrasound, said he didn't want to make any guesses without going over all my medical records. he did not do any blood work to test anything. he told me i could drop my hydrocortisone from 30 mgs to 20 mgs and sent me on my way saying they would contact me.
i got a call from his nurse a couple of weeks later telling me that the endo didn't think i had adrenal insufficiency--thought it was from steroid shots in my heels and they wanted to continue to lower my hydrocortisone and would probably take me off of thyroid eventually.
when i lowered the cortisone, my arthritis and my dermatitis went into quite the flair. the nurse told me it was probably a normal side effect and he still wanted me to lower my cortisone in 4 weeks--unless my arthritis did not get better. i did improve---but got reallly bad in my knees again over time until i went on an RX anti-inflammatory.
i started to wake up with the shakes really bad and would get times when my heart would just start pounding really hard--i figured i was getting hyperthyroid--so i lowered the amount of armour i was taking and those symptoms eventually went away.
fast forward to now--can't tell you exactly how long the time-line was on the previous events, but i pretty much feel like hell right now.
my joints hurt, my muscles hurt, i am very depressed and cry almost daily, i am irritable, my skin is always itchy and has that crepe paper look to it like someone in their 70s has. when i wash and dry my hair, my ears turn hot and bright red and my head hurts. my feet are like ice cubes and i wear socks and slippers almost all the time. my hands quite often get cold, too. i get really cold--just a trip to go potty during the night will have my teeth chattering by the time i get back in bed. my temperature for years has been about a degree below normal. i forget things, i can't concentrate--but i do get obssesive thoughts. i know i have more symptoms than this--i just come up with them right now. it finally dawned onme the other day that once i had gotten through all the weddings---i kind of crashed and i'm worse than i've been for awhile.
then it dawned on me that i was basically off of cortisone and my thyroid dose is not very high.
the doc i would like to see is an MD---he is actually a thoracic surgeon who took a special interest in metabolic conditions after his wife got cancer and died. he said that only about half of his practice is with locals--the other half come from all over the US--utah, idaho, arisona, florida, etc.
my sister said he ran a huge number of tests on her to see if she had any deficiencies--this is something that i would love to have done because i am sure that i am mal-nourished. she said she is on quite a few supplements--but that he does not intend on keeping her on them permanently. she is also on some type of cortisone--but this is not meant to be permanent, eithr, only to build them up until her body's nutritional health and thyroid health has been optimized. she is also on thyroid meds because she has hashimoto's. if he were som naturopath or chiropracter doing this---i would not even consider it---but where his is a regular MD who practiced orthodox medicine and has incorporatied a wholistic approach i have alot more faith in him. my sister has sought him out because of a bleak diagnosis that her daughter was given---her daughter is now doing great---so my sis decided to see him herself because she was not happy with her endo.
i hope that made sence---i always like talking to you, probably because you were one of the first people to respond to me when i joined the board and you've always been so nice---thanks!
i don't know if i will be able to find someone closer to me who uses the same methods as this doc, but if i can't--my husband will let me fly to connecticut. even if all he could do was make me 50% better--that would be 50% more than what anyone else has done for me!!
You really need to be under the care of an endo - a good one (and there are a lot of bad ones out there) and maybe even a neuro-endo - so go find a larger hospital or university center so that you can get a proper doctor who can manage and test you for all the hormones that may be off.
Some people may only need cortef - some need florinef and some need DHEA as well. I take all that and salt too - and the thyroid etc etc etc. I have to travel to a doctor.
I am not sure being on HC builds someone up... to be honest - it is a corticosteroid. It has an anti-inflammatory effect so it makes you feel ok when you are on it but the wean is or can be rather awful. It can raise blood sugar if you are on too much, and has hidden side effects on the eyes, muscles and bones (and other things too) depending on the dose. Cortisol is an essential thing if you need it but if you don't, if just suppresses your adrenals and replaces what they do - putting you at risk if you get sick as they won't kick in if you need them. I think vitamins and all are wonderful but I find some things should be done with care and corticosteroids should be administered as carefully as narcotics. IMHO.
I am glad you had a stim test - it is weird you had another while on meds though... low ACTH means your pituitary needs to be looked at more or the test was not handled correctly. If the pituitary was ok and the adrenals were not functioning, ACTH would be higher as the pituitary would be trying harder to make the adrenals push out cortisol.
this MD i am considering tests all the hormones, too. when i saw the first endo, she put me on armour based on the tests that had been run by my orthoped before he would do my carpal tunnel surgery--he wanted to make sure low thyroid and low B-12 were not causing the carpal tunnel problems. my thyroid was in the normal range--but at the low end and my B-12 was flagged as high. my orthoped felt like the thyroid was too low.
when the thyroid meds did not make me feel better, she ran a bunch of blood work and it came back with a lot of things that were either high or low---she looked at my report and told me she had never seen this before.
she did the stim test shortly after that i think, because my cortisol was at the very botttom of normal.
she eventually ended up putting me on hydrocortisone, testosterone, DHEA, and i think T3 was added at one time.
what i saw as a problem was that it didn't seem like she was following the levels of what she was trying to normalize---it was like she would run some of the same tests, but then run different tests, also. once, she dropped my hydroxyprogesterone to almost nothing--not sure exactly how that happened, but it came back up to normal the next test. she did an MRI with contrasts on my pituitary, but it didn't show anything obvious. she said that sometimes they can stop functioning for no apparent reason.
i was just so unhappy with the fact that she never told me i should be wearing a medic alert or that i should have an emergency injection of hydrocortisone i had to ask her about these things myself because i looked them up. she never told me anything bout adrenal shock or how it should be handled. the original testosterone she called in wAwas going to cost over $200 dollars with my insurance---and it was a mans dosage. i told her that there was a compounding pharmacy that would make it for $10--but she said she wasn't comfortable with that and i would have to get one of my other docs to prescribe it.
the nurse called and told me they had called in an RX for the emergency injection---but they never did. she had me on 30 mgs of hydrocortisone--which seemed higher than what most people were taking.
eventually all my hormones seemed to get into the normal ranges--the testosterone took the longest to normalize---but i have no idea if they were in the right balance with each other---and i know that being balanced right with each other is really important.
i went to her feeling pretty lousy, and even though she managed to get my hormone levels in the normal zones---i never felt any better--the only improvement i felt during all of the time i was seeing her was that it improved my sex life---i assume because my testosterone got back up to a normal level.
i think it is a little weird that the second endo didn't run a single test on me to see where any of my levels of anything were at, read through my stack of medical records---which was missing a few things---and decided that i did not have an adrenal insufficiency (regardless of the fact that my ACTH levels were too low) and his plan was to wean me off of the hydrocortisone and then probably take me off of the armour, too---since the original test from 2-3 before had been in the (low) normal range.
i was basing this on the fact that i had had the two shots in my heels for pain---without knowing how much cortisone i had been given with those injections. i just recently learned that the docs are regulated on how much and how often they can give you those cortisone shots for the very reason that they can shut your adrenals down. i don't think that my orthoped would have given me too much. my husband has had cortisone shots from him a number of times over the last 10-15 years and never had a problem.
i was given several steroid shots when i was in preterm labor with my twins 20 years ago and it didn't give me any adverse effects.
at first i thought this second endo was going to be better, but with all of the hassle we had going on during the holidays with two weddings and the reception and the surgery i could not get back up to him---but i did call their office----i guess i would have at least expected them to order some sort of blood work to see where i was at and make sure that what he was having me do was working ok with my body.
i was almost out of hydrocortisone, and i called them and explained the situation and that i knew i couldn't just drop it, but i wasn't sure when i was going to be able to get there with everything going on. they told me they would only fill it once for me until i came in again.
i guess i would have thought they could have at least communicated with my local doc or something and have him check things according to the endo's instructions instead of just leaving me hanging. so, i had no choice but to look at how much i had and keep weaning myself off of it so i wouldn't suddenly run out and have major problems. i know my adrenals were working at least a little bit before i was put on the meds because my levels were pretty low---but not 0.
i don't know about helping to temporarily strengthen the adrenals, either---i have read so much info saying yes and no on that one---but i do know that being on a low dose of cortisol isn't going to permanently hurt anyone, either, as long as they wean them off right.
i've read several articles this doc has written and some of the stuff he wrote about i was already familiar with and have seen written other places. i still don't know that i will be going there, but there isn't anyone good close to where i live.
i have an appointment with the endo i saw last fall. he never did any blood work,just and ultrasound to look at my thyroid nodules and said he wanted to read through my medical records before making any decisions. he had me drop my hydrocortisone from 30 to 20 mgs immediately. his nurse called within about 2 weeks and said the doc did not think i had secondary adrenal insufficiency. he thought it was caused by the two cortisone shots i had gottenin my heels were the cause and he wanted me to lowere my cortisol in 4 more weeks--even though my arthritis and dermatitis had gone into quite a flare.
i've done a little research--i know that long term use of steroids can cause your adrenals to stop functioning--but 2 or 3 shots given into a specific muscle or joint should NOT cause much in the way of side effects--and if they do, it would be short lived.
i asked my orthoped today how likely it was that the two shots i got in my heel about 2 1/2 years ago would have caused my adrenal insufficiency. he told me it was very unlikely--and that even if it did affect them it would have only been for about a week. i have been seeing this doctor for probably 20 years and have alot of faith in him. the endo, i hav only seen once, and he did no blood tests an knew nothing about me but what he learned from talking to me for a short period of time and from what was on my medical records---and there are some mistakes in my records--but they didn't seem to be of major importamce relating to my adrenals or thyroid, so i didn't bother to correct them.
my adrenal insufficiency was diagnosed with a stim test and i also had an MRI with contrasts done. my ACTH was low indicating a pituitary problem. isn't it a little irresponsible for this guy to take me off of cortisol on an assumption without even talking to the doc that gave me the steroid shots and without doing any sort of testing as i was tapering off?
i really don't have alot of confidence in him and am only going next week because i have no one else to see at the time, and i am out of medication.
how good would you all feel about a doctor like this?
Corticosteroids are... from what I have seen (and I am not a doctor so this is purely anecdotal information), unpredictable in people. Some people tolerate them really well and other people can be super sensitive to them. In my own case, I am a sensitive. I had Cushing's where my pituitary put out too much cortisol - and while my tests never appeared super high, my damage was very severe. I have met others like me - and yet have met others with super high tests and little damage. So the levels don't always correspond to damage and side effects. So one person can get a shot and not be effected much while another can get AI or Cushing's from it.
If you need HC, it is strange that the doc will not give you more! But the insurance rules now are that the doc has to see you to fill scripts.
Did anyone else look at the MRI to give another opinion - aka a surgeon?
makes sence what you said about different sensitivities----but i remembered something i hadn't thought of because it was so long ago. when i wass carrying my twins, i went into pre-term labor and i was given anywhere from 2-4 steroid shots which did not affect me adversly in any way. i remember the doc telling me that it would build up my babies lungs just like it built up the athletes muscles----so i think that i tolerate them well. in fact, after i had my twins, (and got past the initial exhaustion of having two newborns) i felt like i was more on top of things than i ever had been.
this doc based his decision to take me off of HC strictly on the fact that i had had those two shots in my heel--nothing else. i left my medical records with him because he wanted to go through them before he made any decisions. when i
left his office, they didn't make me any new appointment to see him and they did absolutely no testing of anything---even though i hadn't had any testing done in a long time.later, after he went through the records and decided he didn'y thinink i had secondary AI they told me lower the HC dose in 4 weeks--and that once i was off of the HC he would probably take me off the thyroid. I wan't told to come backin at any time, nor was i told to call and let them know anything--basically, i was left hanging in the air with no instructions. when i was in his office he didn't give any RXs for my medication that i was supposed to be weaning off of. i had somje left from the previous doc, so i had been using that.
anyway i called because i was about out of meds and they made me an appt for next friday--but it is not even with the endo--it is with his PA. they also told me that they had no record of me being on armour thyroid. i called them back and told them that 14 different pages of my medical records said that i was on 30 mgs of armour thyroid--(about 2 of them said some kind of T4 because they couldn't get armour). i don't how he could have missed that i was on thyroid meds when it was mentioned on that many different pages---and he made his decision for how to treat me by reading those records. they told me if i saw the endo again that it would be a bad sign because it would only be if i was going downhill---i told her i was definitely going downhill.
i am really angry about making a 3 hour trip to see an endocrinologist, only to discover that he apparently only sees a patient once and then his PA sees them after that. if i am going to a specialist---i want to see the specialist!! the gal on the phone also mentioned that they might do a stim test--without me fasting???? i didn't think thye worked that way.
i am so discouraged. i have no idea how to get any help. we are so far away from everything and i don't trust myself behind the wheel because i get so tired--and my husband yells at me whenever i talk about anything medical.--seems like i might as well give up now ,cause i don't know how i can get any help. i'm too exhausted to even leave my house most of the time anymore. i', good for only a couple ofhours a day--and that is because i am taking a stimulant.
A PA can handle some things but if you have a complex case, uh yeah, it is not that good... and the stim test should be done correctly so it comes out well otherwise why spend the time and money on it?
The fatigue is a problem - I know I get it myself... I sent you a PM to help you find a different doctor.
how low will ACTH production drop if the adrenals are shut down by steroids? i thought if your cortisol was too low that ACTH production would rise to try and make your adrenals produce more. would temporary steroid usage totally screw up a persons hormones--or would it just maily affect cortisol production, or does it make you stop producing cortisol and ACTH? i'm really confused.
i know that normally TSH and T$ should be opposite each other--but my TSH is totally unreliable. one doc saw that my TSH and T$ were both low (should havve been a red flag!) and he kept lowering my thyroid meds until he got my TSH normalized---but by then my T4 was so low you could just run your fingers through my hair and it would come out in multiple strings through my fingers--there would be globs of hair in the shower--but by darn--he got that TSH where he wanted it!!! i can't imagine what he was thinking, when he could see that the T4 was already low, that would make him drop thy thyroid medication lower. i think he lowered it 2 or 3 different times before another doc realized how low my thyroid was and raised my medicationlevels back up---and i didn't lose the outer 3rd of my eyebrows with the rest of the hair loss.
i know that most of the thyroid tests are not reliable. what should i be asking the PA i will be seeing on friday? i would think they should have tested my cortisol levels while they were having me lower my HC. the gal at the office said they were switching over to being part of a big hospital and that some patients just fell through the cracks----i told her that i though thyroid and adrenals were pretty bad things to let fall through the cracks. i am not happy at all about seeing a PA instead of the endo--of course i wasn't thrilled about seeing the endo himself, either--but i felt like he was my only option for right now. should i be asking her to run any specific tests? i honestly don't think those two shots shut my adrenals down---i remember that in the months before i saw the first endo, i had been under a tremendous amount of stress, i had gotten sick for a week and we were moving---i started losing weight--and kept losing it and had no idea why i was losing so much. my girls tell me that people were asking if i had an eating disorder.
If the adrenals are the source, the ACTH tends to rise as the pituitary tries harder to signal the adrenals - hence people tend to tan. If the pituitary is the source, then ACTH is low and not signaling the adrenals to put out the cortisol - that is the difference between primary and secondary. The treatment is the same. ACTH though is a fussy test and few places do it accurately - it should be in a chilled tube and spun as soon as it is drawn.
Have you had any free T3 or free T4 testing done? Those tests show what the thyroid is doing, not the pituitary... TSH is a pituitary test. Bouncy TSH is a sign to me that something is going on with the pit... that is what happened to me. Just adjusting based on the TSH is horrible.
i don't crave salt--but i do crave sugar. i have to go pee an awful lot--but i don't drink excessively--i just seem to have a really sensitive bladder--especially if i eat or drink anything acidic. however, every so often, it seems like my kidneys go in to some sort of "flush" mode and i will have to go potty over and over again--and my bladder will be pretty full. it isn't just an irritated feeling with hardly anything in my bladder. at one point in time my obgyn thought i had interstitial cystitis--but i finally learned a trick from a urologist---i drink a teaspoon of baking soda in a glass of water and it neutralizes the acid and helps the situation---i haven;t had a test for a UTI in years, now!!but, the baking soda in water just about gags me!!
i have had free T3 and free T4 testing done by my old endo. she ran a zillion blood tests, but i don't think she really knew what was going on with me and she never managed to help me feel better at all. i wonder if it had anything to do with the fact that she started me on thyroid meds for a while before she started me on HC. she did an MRI of my pituitary--but it showed nothing---but she still assumed it was the problem since my ACTH was low along with my cortisol.
my T3 and T4 levels were kind of up and down. the last time they were checked--over a year ago. my T3 was on the high side--but the doc said she was alright with that---and i have since read that is ok.
i knew my TSH was unreliable--i don't know why that one particular doc didn't--it said right in my medical records that i was taking hydrocortisone--he had to have known there was somethig else going on--but he didn't order the original test, my psych did--but then thie other doc read the results, and changed my dosage---2 or 3 times---and didn't always put it in the notes. i would see the psych, but i think the blood tests weren't back yet, so he didn't see them--then the other doc would see them and screw with my meds again. hope all that made sence. i really don't like going to an office where you don't see the same person everytime you go in. too many things fall through the cracks or get missed because one doc orders a test and the results come across another docs desk. i had that happen once when i had a miscarriage---it was incomplete, and whatever levels they check were not dropping---it finally got straightened out when a pregnancy test said i was still pregnant--but a blood test said otherwise. i needed a D&C. my doc admitted top me that he had missed it--i appreciated his honesty--the only real harm it did was that it took a little longer to resolve the whole thing.
i am just desperate to feel better!!! i feel like i am going progressively downhill. we keep saying i have fibromyalgia and arthritis--but i don't understand why it is getting so bad --and the fatigue is about to kill me. some days i don't feel like i have much left to live for. sometimes i htink i just have to make sure my youngest gets raised and is ok. sometimes i feel like i am dying inside--i guess that is the depression.
i'm so MAD,MAD,MAD!!!! i get so uptight and upset over things that should not be that big of a deal--but i recently read an article written by a doctor that described this type of behavior as one of the symptoms of low cortisol--so i am going to try and give myself a break and try and remember to make sure that i am really drugged up with clonazepam and soma when i have to call someone and take care of a problem (AT&T comes to mind here) i also find that i feel totally drained when i have to deal with anything that arouses emotion----then i read that that is also a symptom of low cortisol, to basically be totally drained when dealing with stressful things.
anyway--i called the endo's office and wanted to know what i could expect when i went to my appointment on friday because i felt like they had left me hanging when i saw them before. they told me that i had missed my 6 week follow up appointment on august 6th and that i had canceled an appt in jan. i told them no one had ever made me an appointment in august they said i had also canceled an appt in jan-- they said it was the 27th--last friday.
i had called them and made an appt., but i was also trying to juggle another appt for my husband since it is a 3 hour drive for us. we couldn't get a return call from my husbands dr (AT&T problem, missed calls not showing up until hours later)anyway, my husband called and said he couldn't get off work--too many people were going to be gone--so i called the endo back and cancelled the appt and with a few more calls and a little more juggling, we both got appointments for this saturday. so basically i explained to her that it was not really a cancelled appointment--just a changed appointmentdone within about an hour.
then i called my daughter, who had taken me to my original appointment, and asked her if they had made me a follow up appt when we left--she said we left that office without them making me an appointment---i knew i wasn't crazy--besides, the "missed" appt was on a tuesday, which is my husbands route day--he never could have taken me--so i never would have made one on that day.
once i had explained to the office manager that i would have had to have my husband take me because i can't drive myself--so i know i didn't make an appt., she softened her tone and reminded me that i needed to take care of myself--moms have a tendency to take care of everyone else and not themselves. she called me back later to say they would fax blood test requests so we would have something to start with. i apologized fo being so upset, told her i knew it was a symptom of low adrenals and that i had appropritely drugged myself to stay calm!LOL! i asked what the tests were and she said TSH, CBC and CMB. i told her that a TSH is totally unreliable on me and could they please run freeT3 and freeT4. i was hoping for hormone testing and cortisol testing and tesing anything else they could come up with--but i guess we can start with at least this.
you are far more experieced at this than me--would you mind coming up with a list of questions i need to be sure and ask when i go in? i'm going to try and write down everything i can think of, but i'm sure i'll forget something. hope that's not asking too much!
I am not comfortable making up questions for others. I don't know your history or the doctor.
I am not familiar with craving sugar - just salt.
Has anyone done any testing in regards to the urination - there is a pituitary issue about too much peeing called diabetes insipidus. Maybe tracking the amount you drink and pee can help understand that.
that's ok--i just thought you might have some ideas.
sugar craving is a symptom of cortisol deficiency----i wouldn't be surprised if it was part of my hypoglycemia, too. the really weird thing about my eating, though---besides the fact that i know my diet is horrible, is that i have no appetite. i know i need to eat, and i can even feel that my blood sugar is going down, but i still have no desire to eat. i have to make myself eat sometimes to make sure that my blood sugar doesn't drop too low and that i am getting some sort of nutrition in my body. however, i get the munchies at night and then i'm looking all over the place for something to eat---i usually settle for crackers with cream cheese.
i am familiar with diabetes insipidus--they checked my daughter for it--but she didn't have it. she just seemed to have a sensitive bladder. i'm pretty sure i don't have it---i hear the people with it pee gallons (figuaratively--i think) i probably don't drink enough fluids as it is. i do remember, years ago, when i first started having the bladder issues, my old family doctor saying something about innappropriate diuretic hormone secretion. i assume he was referring to vassopressin. is that a hormone level that endos check, or only if they think there might be an issue with it---probably depends on the endo, right? i know it has never been checked on me.
i know that an irritable bladder is one of the symptoms of fibromyalgia. i think it's just something i have to watch carefully with what i eat and drink---and try to avoid as much acidic food as i can. i take 1/2 a caffiene pill with my pain meds because it makes them work better--and i think caffiene is a diuretic--maybe that is part of my problem. i haven't had very many UTIs--but i feel the symptoms of them before the bacteria will ever even show up on a test strip. i swear i feel things that other people don't feel. sometimes the best way for me to describe how i feel at times is by saying that is feels like someone has turned the volume clear up in me central nervous system.
the worst part about dealing with all this crap is that it seems to consume my life---and because i am so desperate to figure out what is going on and try and fix it, if i can---i end up talking waaay too much about it---and my husband despises me for it. he refuses to read any information on it, so he really doesn't understand it--he just wants it to go away so i won't talk about it. i guess i really need to just keep my mouth shut---maybe i should start a medical journal to write what i am thinking---and it would probably be a good idea to have one to keep track of symptoms, when they happen and what might be setting them off.
i guess i just want him to listen to me and understand that i'm not trying to be the way i am on purpose and that i am trying to figure things out. i've actually learned alot of things by talking to people--but my husband says i talk too much---i've always done that--even before i had medical issues that i talked about.
the funny thing, is that people either love me or hate me for it. i've had two different people tell me that's what they love about me. just recently a gal at church told me that when she first moved here, that i was the only person she felt comfortable talking to. i asked her why, and she said that everyone else would just say hello--basic greetings, i guess, but she told me that i would actually TALK to her. years ago another gal told me that when she first moved here and came to our church that i was the only one that would talk to her.
during the summer, i showed up late to a class reunion meeting--right after taking my pain killers--that really makes me chatty!! there were only 3 peole there and i breezed in and just started talking away. several weeks later, another friend, that was not at the meeting, told me that one of the 3 people there was feeling uncomfortable because she was a different religion than the other two (not sure why that mattered)but that when i showed up i made her feel comfortable---and i'm the same religion as the other two people that were there. i don't even know how to be myself anymore because my husband seems to hate the way i am---but the way i am also makes other pople feel comfortable---how's that for a dilema?
guess i need to not be so open--and i need to stop wearing my heart on my sleeve----but i don't know what to do about the emotional rollercoaster and emotional outbursts--but it made me feel better to see them on the list of symptoms for low cortisol. my sister's daughter is having the same kind of issues--she lost her best friend from high school because she couldn't control her emotions--she was a wreck. my sister told me that the doctor explained to her that it wasn't her, that it was the hormones that were out of balance that were causing her to be that way. i guess i keep thinking that i should be able to control how i feel and react better than i do--that i'm just weak or not trying hard enough. it was a little bit comforting to realize that maybe some of it i can't control as much as i think i should be able to.
i just wish i knew how to tell what i have control over and what i have limited control over. i guess i have total control over whether or not i open my mouth!!!! this is way to long and i have to go shower and get tax stuff ready.
i think i am going to make two of my girls share a bedroom and take one of their rooms for myself. since kevin and i usually fight in the evening--it seems like no matter what i say he finds a reason to be mad about it--even if it isn't medical. maybe if we spend a little time apart at the times when things are usually worst it will help. besides, he watches TV sometimes until way late and it can be hard for me to get to sleep.
dr.s office called me back and said the PA would not run the Free T4 & FreeT3----she would only run the TSH. i told the office manage that it concerned me that the PA would only run a TSH to check my thyroid because it is so innaccurate. i also told her that is is rarely ever accurate with me. she said the PA may decide to run more tests when i come. i did get them to agree to run an ACTH stim test, though. i asked if i needed to be fasting--and they said NO--i knew they were wrong---so i called my local hospital where the test will be run and asked the gal if i needed to be fasting and she told me yes---i'll go in fasting.
i asked the office manager if i could bring in papers from MDs that told that the TSH is not accurate, she said i could---now i've got to find the best info i can to bring with me on proper thyroid testing and make sure that i check the sources. i think i will also ask the gal that does my stim test if she can give me something to take back to the PA that tells how a proper stim test should be done.
Uh, yes, I agree about the talking LOL... I find it kinda hard to pick out information and how to respond sometimes - because I don't concentrate as well and fear missing something important.
Vasopressin is the hormone that causes DI - they have different names for it - ADH (anti-diuretic hormone) or vaspressin. Other hormones have names like that. GH - growth hormone or somatriptin or however that is spelled - my point is he was probably right and it should be tested but your endo is an endiot. The fasting thing is silly - they should know instructions!
Emotional issues are pretty common with pituitary issues - I know my hubster and I used to have a terrible time but it has been much better since I have been treated. I am so much calmer now. But I don't handle stress well now - probably because my adrenals are gone.
i think part ofmy problemis i need to figure out how to say things a little more compactly--figure out what details aren't that necessary. i'll try to shorten things.LOL!!
i got my blood work.glucose was 109--but i ate a couple of pieces of candy before i had my blood drawn.
everything else was in normal ranges. potassium was3.6--bottem of range was 3.5--never been that low, but these tests always fluctuate.
my cortisol level was 16.2 range was 5-23--but i am not completely off of cortisol. i read you need to be off 2 weeks before you test.
TSH was.51 the rand was o.45-4.67--they are using the old ranges, i see.
i'm sure the PA will look at my tests and say everything looks normal and will have me wean completely off the cortisol.........and i will go home and continue to feel like hell and continue to get worse--but, at least everything is normal.
i'm so frustrated.
my hubby's hydrocele surgery was dec 20---he had to have it drained jan 4, and within 2 weeks it was filled back up--i think the next move might be to just remove the testicle--joy.
i realized that he only has half a thyroid and the other half doesn't work. they have him on T4 only. just dawned on me that he should probably be switched to armour--he's had depression and anxiety and been losing hair--more than what i think is normal for him--and, he has had hardly any desire to do anything once he comes home from work. he used to always have a project going.
Sodium and potassium work in tandem - if potassium was on the lowish end - how was sodium? Have they thought about renin and aldosterone? How is your BP?
TSH is high - I would feel horrid. .3 to 3 should be printed there and if the doc goes by the old ranges - time to move on - using only TSH and the old range is just... ick.
I take T4 and T3 combo... armour is fine if you need copious amounts of T3 but in general the amount of T3 is way to high making most hyper... so with a combo you end up with getting both and being able to regulate both. Or take armour and some T4 to offset the T3.
sodium was144 range was137-146. didn't even think about the couple of pieces of hard candy i ate---i was probably either worried about my blood sugar dropping or my breath since it was morning---they said i didn't need to be fasting--so at least it is not a FASTING glucose level.
and get this--they said they wanted to run an ACTH stim test. this was probably by 12 in the afternoon. they said they were going to use my cortisol level from two days ago, which was done at 8:30 am, as the base level to go off of to see how much my cortisol levels raised after they injected the ACTH. they did one draw 30 minutes later and said i was done. they said they want to see it go over 20. your levels are highest from7-8 am , i believe. mine had beeen 16 something. so then they are stimulating me two days late, around noon, without fasting--and tell me that they can do a stim test any time of day and i don't need to be fasting and that it is fine to use a base level from two days ago. i don't think i will ever set foot in that office again. then i had to tell them i neeeded medication---they said did they call it in--no---did they write you anrs--n.o she said she would have to wait until the PA came back because she had gone to lunch----she went to lunch during the middle of my appointment????? i asked if they were going to test anything else--no---even if i am having symptoms---no. i said that is WHYI CAME TO AN ENDOCRINOLOGIST!!
this guy originally decided i did not have secondary AI because i had had those two shots in my heels. i don't think he even knew the amount of steroid that was injected into me. i have read up on the shots--very little is taken in systemically when it is shot intramuscularly (I guess that fits heels?) it talked about needing to taper off of so it would NOT cause AI, but there was nothing to taper off, because it was a one time office visit---it was not multiple shots into my heels.
the orthoped told me it was highly unlikely that the shots would have caused AI. the original stim test was done in 2008. a later one was done, while i was on medication, which was normal--but isn't that what medication is supposed to do--normalize us as much as possible?
i went to this doc in july of 2010.
he did not do any new testing at the time, nor did he check my current cortisol levels--but he told me to drop the amount of meds i was taking by 10 mgs--the nurse called back within 2 weeks to say doc blamed shots and i was to drop meds again in 4 weeks---unless arthritis flare was not better. i was given no more instructions to call back, to make another appt. asked if i had enough meds--nothing---then i got distracted by two daughters getting married, thanksgiving, christmas, the reception and my husband's surgery.
i guess i would have expected them to test me while reducing my meds to make sure my cortisol levels were ok?
when i called to find out what to expect at my appoinment, i said they had kind of left me hanging before and given me no instructions and no medication.
the lady told me i had not shown up for my 6 week follow up appointment. i told them they never made me an appt.. fortunately, my daughter was with me and could confirm to me that we left that office without an apppointment. i told the lady i would have known if there was one because i can't drive myself and my husband would have to bring me and the date it was set was his route day---i would never have made an appt that day.
she softened her tone when she realized i couldn't take myself there so someone would have had to be with me. i asked if they make reminder calls like other offices--yes--then why didn't i get one?
they are supposed to call me today and they will base whether or not to completely wean me off the HC according to the test of the so called stim test they did. seems almost like medical malpractice to me. i have gone downhill since i have been weaning off the HC---mostly my fatigue has gotten so much worse and my emotions are almost completely out of control.
the doc is hospital affiliated and i think there is a number i can call if i feel like i was treated wrong--basically if i have a complaint, i guess.
i tried to break this up better because i know i use too many words to explain things---i hope you were able to understand me a little better.
Secondary could be regardless of the shots - plenty of my buds find out their issues after the steroid shots - it is the shot that it the *kick* that gets them over the diagnosis hump - either way for AI or Cushing's. If you have an existing problem and you get a big dose of steroids, your tolerance is down for it.
As for the *it stays where it is put* ... I find that uh... not so credible. It can raise your blood sugar therefore it goes in the blood stream and so it goes everywhere - it then effects the entire body. They give you high dose, long lasting steroids too - so the come down can be nasty. Steroids are supposed to be a miracle - but they are no cure - they are simply a stop-gap. Even those on inhalers and all - they can be effected as well. Just different people have different tolerances.
I would see about finding a different, competent doctor. If they have any suspicion about AI - not having you on HC is threatening your life - not only your quality of life. Pretty silly.
i talked to my orthoped today to find out just exactly how much kenalog i was given. i guess i don't understand what you mean about the "come down" from the shots not being easy-------i never had any new symptoms after the shots that i wasn't already having before the shots--but it has been 3 1/2 years and my heels still have never gone back to hurting as bad as they used to.
i think it is interesting what you said about the shots maybe being the kick that got them over the diagnosis hump. in trying to remember my timeline---i had been put on levothyroxine 14 years ago to suppress my thyroid because i had nodules--i now know that that means i have actually been hypothyroid for 14 years to some degree. i just found an article that says it is virtually impossible to NOT be hypothyroid if you are only on synthetic T$ meds--our bodies are not meant to function on a storage hormone alone. that was the first time i did not lose all of my baby weight---i kept 10 lbs on. (i had gained almost 50 lbs with the previous baby and lost it all) obviously my metabolism had been altered.
for almost as long as i can remember, i have run about a degree below normal with my body temp. i went into a severe depression after i had the baby and discoverd the thyroid nodules---i felt like i was dying for probably 8 months. then, i got pregnant unexpectedly when my baby was only 11 months--and had headaches everyday for about a month early on. they went away--but returned when she was approx 3 months old--on a daily basis and i had to go on darvocet.
i was old enough and we figured we were done having children. over time my feet started hurting, my neck was almost impossible to get comfortable when i would lie down and my legs started aching--they upped the darvocet and it seemed to control things fairly well. then the day before i turned 40--i found out i was pregnant---haven't a clue how that one got here.
the pregnancy was really hard on me and i could not get off the darvocet--i tried for one month--but the headaches were too bad.
it seems like all hell broke loose in our family shortly before i got pregnant and especially after she was born--i'll tyell you the details another time--i promise you it will sound like i am making things up because it is hard to believe that one family could have so many things happen to them one after another.
basically, what i am saying, is that i have been under MAJOR stress for the last 9 years especially--but even alot of stress before that.
than some doctor took me off my thyroid meds for a year to see what my thyroid would do on it's own.my step-dad died which changed our family dynamics totally--alot of bad feelings---especially since we bought my parents house and there were alot of false rumours going on in the family, i freaked out about leaving my home of 18 years, got sick and went into a major depression--and started losing weight--alot of weight.for no apparent reason--i had no appetite. i went down to 114 lbs and a size 4--never worn that size in my life i have since heard that people thought i had an eating disorder. i didn't look healthy. i had been weighing around 140 lbs.---then the carpal tunnel got bad enough to require surgery, which required the thyroid test first--doc thought it was too low--and that's how i ended up at the endocrinologist's office. i think when the weight dropped is when my adrenals finally jumped ship on me. the endo ran alot of tests and there were alot of things that were completely out of whack.
even if the shots caused the AI would they have caused everything else to go screwy? i know i told you that the endo looked at my blood work and said, "I've never seen this before." i felt like i was a freak of nature.
since i am now on only 5mcg of HC every other day---been reducing since july---i have progressively gotten worse---especially with the fatigue--and my rashes and arthritis and my emotions are so out of control i am like a crazed woman and crying almost every day and i've reached the point i don't even want to leave my house.
my gut feeling is that the shots did not cause the problem--maybe like you said, they were the final kick--but i really feel like this endo that i saw once , who ran no tests, has really made a mistake by taking me off the HC.
my orthoped tried to find me a new endo he felt good about--but he said there are only 7 in our state. once again--i hope you were able to follow that--sorry about the long post--maybe someday i'll learn how to condense my thoughts and words!!
Not being a doc - just going by what I have found by what I read and found with others like me, you have multiple issues going on. When you have a complex health situation, it makes diagnosis more complex as for some odd reason, people seem to think that you should have one thing at one time and nothing else...
HC is an anti-inflammatory - so of course the skin and arthritis are going to get worse. Have you thought about going to a rheumy to get more testing? They may be able to bring some of the auto-immune components to the forefront. Do you have a decent PCP that can help - if not, get one.
The weight loss etc. - someone needs to pay attention so you need to get someone on your side. Does your daughter yell at the doctor for you? I find that for some odd reason, the doctors often pay more attention to others saying the same thing the patient says when it comes from someone else - like the patient has no credibility (aka the Dr House all patients lie thing).
i went to a rheumy years ago---long before the first endo, when i thought i had fibro. besides the fact that his indian accent was so strong communication was difficult, and i waited for an hour in an empty waiting room, saw him for 20 minutes (was told appt would be for a 1 hour consult)he never checked the tender points for fibro and told me if i had fibro i shouldn't be on pain killers. he did run a bunch of blood work--but it all came back normal. i left his office and cried half the way home.
i also tried a neurologist, who just kept writing notes as i talked instead of looking me in the face like he was listening. he did n't even listen to half of my symptoms--i had made sure to write them all down in a notebook. without even knowing how much medication i was actually taking, he told me that he thought i was addicted to pain killers and that i had restless leg syndrome. his exam also did not include testing the tender points--but he made some comment about how close my hip bones were to my ribs (almost touching) using and expletive as if i was a freak of nature. i was too intimidatd to tell him that i knew what restless legs were, because i got them wheni was anemic and occassionaly when i was really tired and couldn't get into my own bed to get comfortable--but they were not a problem for me---besides the fact that restless legs don't cause headaches or pain in your neck, feet or arms. he said most people go off narcotics slowly--but it usually didn't work and some just dropped them cold turkey.
i was mortified at being told i was addicted and went home and refused to take any pain meds. by 11pm i was in so much pain my husband told me i had better take something. by that time the pain was so out of control that i hurt in places that didn't normally hurt and i had to take more medication than i normally take, and it took HOURS before i could get relief. i fell asleep about 3:30 am. the next day the pharmacist told me you are NOT supposed to go off it like that, and that they knew who had the drug problems and that i WASN'T one of them. my doc assured me they knew how much i was taking.
needless to say, i have never set foot in either on of those doctors' offices again.
i'm not impressed with our PCP at all--but we don't have much to choose from. i had bilateral shingles when i was 3 years old, and he looked at me and told me that you can't get shingles on both sides. it's rare, but it happens---of course getting shingles at 3 years old back in the 60s wasn't common, either. i haad yeast on my breasts while nursing, he never check them, just gave me meds and didn't treat my babvy at the same time. when it didn't clear up, he told me it must not have been tthrush--and still never checked by breasts to see what the rash looked like. my baby was refusing to eat, she had had thrush which no longer showed in her mouth. i asked if she could have it and it not be obvious--he said no--i called ped GI who said yes, it could be in her esophagus. he put her on diflucan, told me to stopt nursing and get meds for myself (obgyn) my baby starting eating, sleeping and gaining weight and my breasts cleared up.
the psych put me on abilify and balooned to 150 lbs--so the weight loss was forgotten.
the endo's office just called me and said my test were normal so i am supposed to drop to 2 1/2 mgs of HC for 2 weeks and then stop it. i asked if they were going to check anything else because i had had a slew of other hormones that were off originally and that i was getting some of the symtpms back. she said no, because they felt like the adrenal were the primary problem and that is all they were focusing on. i asked if it was their normal practice toonly focus on the original problem someone came in with even if they had symptoms of other problems and all she kept saying was they felt like this was the main problem so that was all they were loooking at. i told them i needed more thyroid medication and she said she had to talk to the PA abput whether or not they would call it in be cause they wanted to turn me back over to my PCP. i only have enough medication for 2 weeks. usually when a doc has tested my thyroid, they give me 6 months to a year of refills.
i think refusing to acknowledge that i am having other symptoms with the fact that i have a history of multiple endocrine hormone imbalances and refusing to test anything else just about amlounts to medical mal-practice. when i was not happy with my first endo and talked to my PCP--he indicated i needed an endocrinologist--like it wasn't something that he felt he could handle----i am sitting here at a lost and disolving in to tears---i don't know what to do.
teh nurse even told me i was supposed to taper of for 2-3 weeks, i said which is it, 2 weeks or 3 weeks? then she said two weeks. i said that shouldn't my cortisol tests me normal if i am still on meds, she said yes. so i asked if they were going to test me once i got off of the meds--she said no.
well, i'm sure my PCP won't step up--he told me i need an endocrinologist--plus, i don't have a lot of faith in him--i keep trying, but it just isn't there. he's fine for the kids simple illnesses, but i go elsewere fo almost averything i can--my obgyn, but mostly our orthoped, who is probably the most helpful doctor we have.
the endo is hospital affiliated, so there is a department that deals with patient and family realtions. (problems) i was told a message would be left for the nurse to calll me pinned as urgent. i called back 4 hours later and they said they passed my message to the endo and he would call me back---when could i expect him to call?---i was told he was a busy man. they would not even call in my thyroid medication--said PCP was to do all refills---oops that's an old note from december--still wouldn't call meds in---what is my PCP supposed to use as a reference for meds----the PA ran the TSH.
talked to an endo online, agreed with my orthoped that it wasn't likely that the shots shut my adrenals down and said it would not have messed up the rest of my hormones.
i asked if the way they ran the stim test would give them any idea of what my adrenals were actually doing--he said no that the stim test needed to be run the same way the others had been run (according to protocol)
he said it sounded like low thyroid and low testosterone----i suspected low testosterone myself because of similar symptoms from when it was low before--at least i know i can get my obgyn to check that.
i found a test result in the records the doc had supposedly been through that showed my cortisol level being only 6.3 before i got the steroid shot----so i know my adrenals were barely hanging in there before i even got the steroid shot.
they said my cortisol level was normal---but how much can i trust that test if i was not fasting and i took my HC that day?
if i can't trust the shoddy stim test they did to really tell what my adrenals are doing, and i know that they were almost tanked before i had the steroid shot, then i had a stim test that showed low cortisol and low DHEA and i didn't respond normally to the test--i've been on HC for 2 1/2 to 3 years then weaned off. i'm not sure where my adrenal health is sitting right now and i'm a little nervous.
would being on the meds make them strong and back to working normal? or am i living with adrenals that are barely hanging in there and i'm just a time bomb waiting for the wrong stressor to overload them and put me into adrenal shock?
forgot to say--i called the relations department--aired my complaints and concerns--said i didn't want to pay for a shoddy stim test, wanted to know if doc had made any kind of note in my records that said he had seen that my cortisol levels were only 6.3 before i got the steroid shot and told her there was no reason for them to refusde to call in my thyroid medication--except oneryness.
she was going to call about the stim test cost and about my meds--but she couldn't address my adrenal concerns and i told her i would not go back to that office. she also told me i could refuse to see a PA--which the office never told me!! she said i had a right to choose my provider. i even complained to the office about seeing the PA.
No, being on meds is a replacement - nothing makes them healthy. They should do an antibody test to see if the adrenals have an auto-immune disease or if the cause is likely pituitary. Usually with the stim test they can do both the adrenals and the pituitary to determine the source but since they can't seem to do one test correctly well...
That is dang horrid about the PA - not that the endo seems to be all that great anyway.
I just don't think in general, adrenal or endocrine disorders are well understood - even by endos.
i don't think the 6.3 was an am fasting the paper says that it was drawn at 10.25 am. i have an ACTH level that was drawn 2 days later at 11.51 am. it was 9---the reference range was 6-58. i think that since she could see that both levels looked pretty low, she decided to run the stim test. this was my first endo. i got the shots in my heels the day after the ACTH levels were checked. that was june 1. the endo did the stim test on june 19. i went in fasting. 8am draw showed cortisol level of 2.4 reference was 5-25, and ACTH level of 5--reference was 5-27. 30 min draw showed cortisol of 9.5, 60 min draw showed cortisol level of 11.6. test was looking for a peak level of greater than 20.
from this info my first endo diagnosed me with secondary adrenal insufficiency and said it was caused by my pituitary, although MRI of pituitary showed no pituitary disease. she said sometimes some of the cells just stop working. both my orthoped and the endocrinologist online that i talked to did not think that the shots would have shut my adrenals down. even if the shots had shut them down, i think it would have only affected my cortisol levels---which were already low---i don't think it would have affected my ACTH--which was already low, anyway.
before the cortisol, ACTH and stim tests were done she had done blood work that showed low DHEA, low testosterone--free and bioavailable, high sex hormone binding globulin and estrogen that was over 1000---i think that one was a fluke because it was normal after that--obgyn thought i must have been ovulating--but he had only seen levels that high a few times.
the endo put me on DHEA 25 mgs and testosterone cream and everything eventually got back to normal.
she had me on 30 mcgs of armour and after the stim test she put me on 30 mgs of HC.
i left her office because they were so unorganized and i wasn't told about adrenal shock or needing a medic-alert or needing to have an emergency HC injection kit. RXs got called in wrong or not at all, phone calls didn't get returned.
i can see now, that at least she knew her stuff better than the second endo---but she never ran any antibody tests on my adrenals because she said the pituitary was the cause and there are no antibody tests for it. i just never felt better when she was treating me, either. i've done alot of research since then and i think my thyroid needed to be treated with a higher medication---my TSH was going to be totally unreliable because it is a thyroid hormone. i also think i probably have some nutritional deficiencies that need to be addressed.
i read that before TSH and synthroid, docs diagnosed by symptoms and treated according to symptoms----and people felt better----but their natural thyroid med doses were usually 6-8 grains---i'm only on 1/2 grain.
my husband wants me to see the doc in connecticut that my sister is seeing. when i emailed him, he told me that virtually everything i told him could be explained by low thyroid and low cortisol---funny, i think that was my original diagnosis--note the sarcasm!!
he said that was off the top of his head, but felt that if he examined me and ran the necessary blood work that he would probably come to the same conclusion. besides the same type of tests that the endo ran, he also tests for some other deficiencies. he's a regular doc who decided to take a wholistic approach to treating the endocrine/metabolic system to get them working at an optimal level. he prescribes RXs and supplements. sounds like the best of both worlds to me--plus the fact that he went from thoracic surgery to taking a special interest in the endocrine system tells me he's not out to make a buck off me. he doesn't sell you supplements either--but he'll tell you where you can find them for the best price.
I'm going to email my sister's doctor again today. He had told be to call a lady at the Broa O. Barns MD Research Foundation. He works closely with this foundtion, it is an endocrinology research group. he said they have a list of doctors that have attended their seminars or presentations or whatever it is they do to geth their information out about how to correctly treat and balance the endocrine system.
I just can't seem to get through--their phones are busy, it took almost 2 weeks before my message got returned----and i was gone--so all i got was a message back!!! i guess i'll be playing phone message tag for awhile until we can get connected.
In the mean time, i am running a little nervous. I talked to the endocrinologist online again and asked him if i could trust this second doctor, or if i was a walking timebomb with weak adrenals just waiting for the wrong stressor to put me into adrenal shock and asked him if i should be concerned.
He said, yes, you should be concerned, your first diagnosis was correct, your first endo was correct, you need to have a stim test done (the right way) and he said i needed to have my pituitary checked if i had low ACTH.
so......i'm trying to figure out who in this little town i can get to help me for now.
i've told him that i was diagnosed with secondary AI. he sent me info to get started and mentioned that since cortisol deficiency could be a possibility he thinks it would be a good idea to do a hormone profile
since it may be a little bit before i can work out the details to get me there, i may see if i can get a local internist to run an ACTH stim test to see what my adrenals are doing. i found out we have a new internist that has taken an interest in endocrinology.
A doctor that belives in adrenal fatigue would do me more good right now than the endocrinologist who says my diagnosis of secondary AI was wrong and pulled me off the meds.
i try to ignore articles about adrenal fatigue---especially since it seems to be all the rage right now---but when i think about it, i think there could be some truth to it. since my levels were low enough to show on a blood test i could get an actual diagnosis, from the first endo, at least. but, if there is a range of 5-25, and they recognize insufficiency below 5, i would think that i would have been feeling symptoms when they were 5,6, or 7--but that is within range, so they would say i was fine.
i remember feeling a bit frustrated when my girls were first diagnosed with celiac disease. they were diagnosed with the Ttg test---so there was no question that they had it. but, gluten free was becoming a fad at about the same time. i had a doctor's wife try to tell me that if my girls didn't get sick when they ate gluten, that they might not really have celiac disease because it was a really popular diagnosis. people were talking about gluten intolerance without having actual celiac disease alot. it was in the magazines all the time. well, 6 years later, the celiac specialists are now acknowledging (SP?) that there is a gluten intolerance that is not celiac disease.
i guess i'm hoping that since he is a regular MD, even if he believes in adrenal fatigue, that he will make sure to see that we either rule in or rule out the actual secondary adrenal insuffficiency. if he doesn't do it on his own---i will insist on a correct stim test if i haven't already had it done.
i've gotten some really conflicting info over the last couple of days.
Ihave talked to and endocrinologist at UCLA on-line and i have talked to some lab on-line and asked about how to test correctly.
the enod on-line said i needed a correctly done stim test--that the one that was done recently was wrong and that my original endo was right and my diagnosis was right--secondary AI--but if he felt my original diagnosis was right i'm not sure why he would tell me to get tested again----if i can find a doctor to test, i would think i could just take my original blood work and stim test report in and the docs report and they would go ahead and treat me---i guess a doc might want their own tests?
the person from the lab said that the way the stim test was done, with the two day old cortisol test for a baseline should show whether or not my adrenals were being stimulated if my numbers went up a few fold--what's a few fold???? she also said if they were lower or near the same it would mean i had a problem--and she said i didn't need to be fasting. i wrote back and said they didn't test my ACTH levels--even if my adrenals will react to being stimulated, if i don't have enough ACTH, i'm not going to have adrenals that are stimulated. i asked her if this was correct thinking. i'm waiting for an answer back.
the doc i want to go see wants to do the hormone panel--but i think it is a 24 hour urine test---won't that just show my total cortisol levels for the day? is that sufficient to show if i am not producing enough cortisol? If i'm not, will it matter if they know how much i am producing at different times of day as long as i am dosed correctly and at correct intervals? or do i need to do a 24 hour saliva test?
i talked to one of our local ER docs that i know and asked about a new internist we have--he confirmed that he had also heard that this gus has taken an interest in endocrinology. but the doc i talked to did not know anything about the how the stim test was supposed tome done--he just didn't know much about AI. he didn't think i needed to worry too much about adrenal crisis because he had never seen it happen.
are you familiar with the "Stop the 'Thyroid Madness" website? I ordered the book from that site, and the gal's info is similar to the things that the doc in Connecticut talks about.
when she was giving info on how to find a good doctor, one recommendation was to find a Broda Barnes trained doctor. The doc in Conn. works closely with the Broda O. Barnes Foundation and is on their list as a guest speaker for their next seminar.
i am getting so discouraged. i called the office of the local intern and talked to his nurse. she said he knew as much about endocrinology as the other interns. i explained my situation with two conflicting diagnoses and that i wanted to be tested correctly again. she said she would run it past the doctor and get back to me.
i just don't know where i can find help anywhere close--nor do i know who to see in the big cities 3 hours away. i guess this is why i am considering taking a chance on the doc in conn. my sister trusts him and he has helped my niece.
I suppose i could always try the original endo iwent to---she has moved 3 hours away----maybe she has a more organized office now. she has to have a new staff that she works with. May there is a good office manager that keeps things in line. the lady seemed to know a little more about what she was doing. but i never felt any better.
are you a believer in treating with the higher doses of armour until the symptoms go away---regardless of what the tests say?
i've been going nuts trying to look up info--and so much of it is contradictory.
where did you learn about the proper protocol for the ACTH stim test/ i've read it online, and my first endo insisted on fasting and soecific timing of blood draws--i don't know about the chilled and frozen part--but i kinow they letf with the sample immediately.
i've hear others say it doesn't matter if you are fasting and that it can be done any time of day. and of course, there is the differences in looking for doublinng of baseline, or looking for levels over 20. the test i have specifically states it was looking for levels of 20 or over.
are there other things that could make my cortisol low (6.3 and my ACTH low (9) before the kenalog shots?
Do you think the kenalog shots 18 days before the stim test could have made my stim test completely unreliable?
my original thyroid tests with the first endo showed low T4, low TSH and low T3---all were "within range" but on the pretty low end of the scale.
How did you find an endo you could trust--i know you sid you drive 6 hours to get to one.
I travel 6 hours one way and have traveled to LA, Seattle, Ohio etc. to get help. It simply pays to get expert help. However, no one doctor fits all - the doctor that I like may or may not suit you - aka personality or insurance issues. I had to see multiple doctors to find one. Even locally, the doctor I see has both good ratings and bad - so you just can never tell! I have waited to see top docs in magazines only to hate them - but others obviously must love them.
I would say look for info on pubmed, NIH and sites that publish medical papers. The freezing part of ACTH is on the actual lab site instructions as well as some papers. I have heard differing instructions on the stim test - some like a double - some shoot for a specific number. I never could understand if it was the doc, or the stim agent.
Re shot - here are the precautions:
Intra-articular injection should not be carried out in the presence of active infection in or near joints. The preparation should not be used to alleviate joint pain arising from infectious states such as gonococcal or tubercular arthritis.
Undesirable effects may be minimised using the lowest effective dose for the minimum period, and by administering the daily requirement, whenever possible, as a single morning dose on alternate days. Frequent patient review is required to titrate the dose appropriately against disease activity. (See dosage section).
Adrenal cortical atrophy develops during prolonged therapy and may persist for years after stopping treatment. Withdrawal of corticosteroids after prolonged therapy must, therefore, always be gradual to avoid acute adrenal insufficiency and should be tapered off over weeks or months according to the dose and duration of treatment. During prolonged therapy any intercurrent illness, trauma or surgical procedure will require a temporary increase in dosage. If corticosteroids have been stopped following prolonged therapy they may need to be reintroduced temporarily.
Patients should carry steroid treatment cards which give clear guidance on the precautions to be taken to minimise risk and which provide details of prescriber, drug, dosage and the duration of treatment.
Suppression of the inflammatory response and immune function increases the susceptibility to infections and their severity. The clinical presentation may often be atypical and serious infections such as septicaemia and tuberculosis may be masked and may reach an advanced stage before being recognised.
Chickenpox and measles are of particular concern since these normally minor illnesses may be fatal in immunosuppressed patients.
Unless they have had chickenpox, patients receiving parenteral corticosteroids for purposes other than replacement should be regarded as being at risk of severe chickenpox. Manifestations of fulminant illness include pneumonia, hepatitis and disseminated intravascular coagulation; rash is not necessarily a prominent feature. Passive immunisation with varicella zoster immunoglobulin (VZIG) is needed by exposed non- immune patients who are receiving systemic corticosteroids or who have used them within the previous 3 months; varicella-zoster immunoglobulin should preferably be given within 3 days of exposure and not later than 10 days. Confirmed chickenpox warrants specialist care and urgent treatment. Corticosteroids should not be stopped and the dose may need to be increased.
Patients should be advised to avoid exposure to measles and to seek medical advice without delay if exposure occurs. Prophylaxis with normal immunoglobulin may be needed.
During corticosteroid therapy antibody response will be reduced and therefore affect the patient's response to vaccines. Live vaccines should not be administered.
Patients and/or carers should be warned that potentially severe psychiatric adverse reactions may occur with systemic steroids (see section 4.8). Symptoms typically emerge within a few days or weeks of starting the treatment. Risks may be higher with high doses/systemic exposure (see also section 4.5 pharmacokinetic interactions that can increase the risk of side effects), although dose levels do not allow prediction of the onset, type, severity or duration of reactions. Most reactions recover after either dose reduction or withdrawal, although specific treatment may be necessary. Patients/carers should be encouraged to seek medical advice if worrying psychological symptoms develop, especially if depressed mood or suicidal ideation is suspected. Patients/carers should also be alert to possible psychiatric disturbances that may occur either during or immediately after dose tapering/withdrawal of systemic steroids, although such reactions have been reported infrequently.
Particular care is required when considering the use of systemic corticosteroids in patients with existing or previous history of severe affective disorders in themselves or in their first degree relatives. These would include depressive or manic-depressive illness and previous steroid psychosis.
Particular care is required when considering use of systemic corticosteroids in patients with the following conditions and frequent patient monitoring is necessary.
Recent intestinal anastomoses, diverticulitis, thrombophlebitis, existing or previous history of severe affective disorders (especially previous steroid psychosis), exanthematous disease, chronic nephritis, or renal insufficiency, metastatic carcinoma, osteoporosis (post-menopausal females are particularly at risk); in patients with an active peptic ulcer (or a history of peptic ulcer). Myasthenia gravis. Latent or healed tuberculosis; in the presence of local or systemic viral infection, systemic fungal infections or in active infections not controlled by antibiotics. In acute psychoses; in acute glomerulonephritis. Hypertension; congestive heart failure; glaucoma (or a family history of glaucoma), previous steroid myopathy or epilepsy. Liver failure.
Corticosteroid effects may be enhanced in patients with hypothyroidism or cirrhosis and decreased in hyperthyroid patients.
Diabetes may be aggravated, necessitating a higher insulin dosage. Latent diabetes mellitus may be precipitated.
Menstrual irregularities may occur, and this possibility should be mentioned to female patients.
Rare instances of anaphylactoid reactions have occurred in patients receiving corticosteroids, especially when a patient has a history of drug allergies.
All corticosteroids increase calcium excretion
Aspirin should be used cautiously in conjunction with corticosteroids in patients with hypoprothrombinaemia.
This product contains 15mg/ml benzyl alcohol and must not be given to premature babies or neonates. Benzyl Alcohol may cause toxic reactions and anaphylactoid reactions in infants and children up to 3 years old.'"
It says the half life is 88 minutes - but I thought it was more like a pred or dex type med - in which case it was more like this "The half-lives of the injection amount in the vitreous, 4-mg TA-PF, 16-mg TA-PF, and 4-mg Kenalog, were found to be 24 days, 39 days, and 23 days, respectively. " I found that on pubmed. In which case 18 days was too soon.
Re armour - you should never take more of a prescribed (or OTC) med than mandated - and thyroid meds can effect the heart so.... ah... while I would personally like my levels to be higher - I still like a T4 T3 mix to get it up there.
i've seen alot of this similar info when i was trying to look it up--but it all is referring to ongoing therapy and the need to taper down to avoid shutting down the adrenals---i had a hard time finding much of anything that referred to a onetime shot. i did finally find something that said it could take 30-40 to completely clear the system--but it also said it could be sooner.
if it were to take a full 40 days to clear, does that mean that your adrenals would be completely affected for the full 40 days, or would the effect lessen over time as you approached the 40 days.
My cortisol level was already down to 6.3 before the shots and my ACTH was down to 9---so both of them were nearly at the bottom of the normal range--which looks to me like my adrenals were already having a hard time functioning because they were not getting enough ACTH.
I also had low DHEA, low testosterone, and high sex hormone binding globuline--my estrogen was 1159---which is extremely high--but my obgyn felt like it was a surge from ovulating, although he said he had only seen it that high a few times----it has been normal since then---i think it was just a fluke surge--probably because of my age. The endocrinologist i talked to online from UCLA told me that he didn't feel like the shots would have shut my adrenals down like that, but he did say that even if they did, it should not have affected my other hormones.
i went through all my labwork and doctor visit reports yesterday to get them in order for seeing the inernist next week.
I noticed that even when i was on 30 mgs of HC, 50 mg of levothyroxine, and 60 mcg of T3, my cortisol level was only 7.3 (range 2-23) DHEA was 11 (range 56-283) my Free T4 was .67 (range.71-1.85) my Free T3 was 4.0 (range2.4-4.2) my TSH was .06 (range .45 to 4.67) and my T3 uptake was 33 (range 28 to 41)
If i'm reading things right, it looks like everything was either flagged as low, or in the low-normal range---except my Free T3. this was when the doc decided to lower my levothyroxine to 25 mgs---he was trying to normalize my TSH, i guess---he didn't seem to pay attention to the fact that my T3 levels were pretty good. I'm thinking that this shows that my TSH is totally unreliable, which would help to confirm that my pituitary isn't reliable---since TSH is a pituitary hormone---or for some reason my blood serum levels of T3 were high, but that something is keeping me from being able to get the T3 from my blood into my tissues---because none of my symptoms had improved. also, i can't figure out why my cortisol would be at the low end while i was on HC--the level was drawn at (9:44 in the morning, so they should not have dropped that much from their highest morning levels yet.
I've seen the same strict protocol about stim tests that you have on different sites--but i have seen other sites that were really lax about how the stim test was done. and, i had one endo that was very strict about the protocol being followed, and another that didn't come anywhere near to following even the lax prtocol--didn't seem like they followed any protocol.
I did find out that the second endo apparently did not see that my cortisol and ACTH were both low before the steroid shot. He sent a note to my PCP and said he thought the AI was caused by the shot--but he had made no note in my records that my levels were very low before i got the shot. i think he didn't read the lab reports carefully. if you glanced at them quickly, you saw an obvious date in the corner that was telling the document date and the print date (two different dates) but you had to read through the finer print to see the collection date and time. however, the low cortisol showed the correct date for the document date.
when the cortisol showed up low, she ran the ACTH 2 days later, so the print date made it look like it was tested after my shots--but the fine print showed it was tested before the shots. plus, this guy did not hav any actual dr. report telling when i actually got the shots, who gave them, or how much i was given---he was only going by what i told a woman in the office to tell him----just seems a little unprofessional to me.
Hope all that made sence.
why is it that you take a combo of T4 and T3 rather than armour--do you feel you are able to adjust it to what your own body needs that way?
I would never take more armour than my doc prescribed, but i have read alot about how docs used to diagnose by symptoms only, since there were no tests available--and natural thyroid was the only med available. They seemed to have alot more success with eliminating symptoms for people. after they came up with the TSH and synthetic T4, they would treat people using the TSH and give them T4 until their TSH was "right" but people were still having hypothyroid symptoms.
I've also read that for various reasons, some people cannot take armour and need to take T3 only. it's really hard to try and figure this all out---especially where i have adrenal function,looking like it is caused by hypopituitarism, to deal with. i have become extremely frustrated by so much conflicting information.
oh yeah, after organizing my labwork and doctor reports by earliest date to latest date---i could see why i have never felt better. there were so many changes made in my medications, both types and amounts, i don't think my body has ever had a chance to let itself adjust to anything. i could see a change in armour amount listed by the doctor---that was never called into the pharmacy--then the next month her report listed me as taking the lower amount---i think she forgot she wanted to raise it, never called it in, and then didn't look at her previous report where she had raised it. then she switched me from 30 armour to 50 levothyroxine---i had to request T3.
when i saw the psych, my thyroid hadn't been checked in awhile, so he ordered the test--but another doc read teh results (low T4 and low TSH) and dropped my loevothyroxine to 25, next test he ordered an outdated test--lab had to tell him and then run the right one--both T4 amd TSH were still low, so he dropped my levothyroxine completely and dropped my T3 from 60 to 3. next test had low T4 but a normal TSH---my hair was falling out by this time--the psych saw my test results and put me on 60 armour.
My prescription records show that i was getting 60 armour until october of this year--when my PCP changed it to 30 armour. nobody had tested my thyroid, the office checked my record and said it gave no reason for why my armour was lowered. the second endo had seen me in late june/early july and his notes said i was taking 30 armour an that i said i was having shakes and something else so i was only taking 1/2 my dose--i have no idea what he was talking about---except that he had looked at my hand and said i had a slight tremor--it was very slight. my daughter was with me and remembers my version of the visit. when the endo was having me lower my HC, i did have one month when i was waking up with the shakes and getting times when my heart would pound--so i took 15 armour for about a month--then went back to 30 for the next month without a problem. once i was basically off the HC, i have hd a couple of times when i have gotten the shakes and the heart pounding again----but not regularly.
i think it is a cortisol problem and not a thyroid problem--or maybe a combo of both.
if you found all that hard to follow---you have some idea of why i am struggling with what to do, who to see, who to believe, and why i am feeling like crap!!!!
i spent several hours the other day taking all my labwork and chart notes and organizing them according to date---thats when i realized how many times my meds ahd been changed--or were supposed to have been changed---there wasn't even a chart note from the last time i had seen my first endo--the one that was so unorganized---she was suppoed to have sent all of my records--they came in such a disorganized mess with multiples---and no running ledger of my visits like i have seen other doctors keep.
i still can't figure out why there was so much discrepency over how much armour i was taking---or why my PCP changed the level in october without even doing any testing. i don't know why the second endo had me listed as taking 30 mcgs of armour when the prescription records show i had been filling 60 mcgs for about a year---i wonder if i told him that's what i was taking by accident--but i thought i brought all my meds with me like they told me to. of course, he could have looked at the last report from my old endo---but it was dated 1-18-2010 and still said i was taking levothyroxine----and the whole thing about him saying i told him i was only taking half of my dose because i had the shakes and some other symptom is just weird---i don't remember anything about that and neither does my daughter , who was with me.
the last blood work that had been done on me showed that my testosterone was down to 1.7---with the range being 1.1--to 5.8----obviously i was getting really low again--i was hoping the new endo would test my levels, because i had no sex drive again---i'm sure by now they are way below range.
what do you think of the basal axillary temp being used in helping to diagnose low thyroid? i have tested 3 times over the last several days.---97.4, 97.5, and 96.4. i always knew my temperature was about a degree below normal--but i didn't know how low it actually dropped at times---i suppose that would explain why i get cold---and maybe the cold hands and feet.
about the psych and the thyroid test---he told me that was one of the things they tested in their office--not a bad idea since low thyroid can cause or worsen psych symptoms. he also seemed to know my endo. she was from back east originally and i think he said she had treated his sister.
the when i saw him, i had been switched to levothyroxine by my endo because of a shortage in armour (we actually had a compounding pharmacy that could have made a T4/T3 combo for me). i had not seen the endo for several months since she changed me--so he went ahead and tested my thyroid. he seemed to understand that my TSH would not be reliable because of the pituitary problem and told me that the T3 uptake was the most important test. He obviously didn't have everything right--but he knew more than alot of docs. the main problem was that a different doctor looked at the results, didn't recognize an abnormal test and just kept lowering my thyroid to try and make my TSH normal. one time, when he ordered the tests after lowering a dosage---he ordered an outdated test---the lab put a note on the test saying the panel he had ordered had been replaced by another test over the last DECADE. the guy had no business messing with my thyroid medication---he didn't know anything about it and he didn't even order the original test. he also didn't even write down in my medical record one of the dosage changes he had made.
I've seen so many different test that can be run--i'm not sure which one's to ask this doc to run when i see him on thursday---assuming he is open-minded, that is and is willing to listen to me. if he tries to tell me that the TSH is a very reliable test---i hope i don't start screaming hysterically.
TSH is a reliable test... for the pituitary! Why it became the gold standard as a thyroid test is unknown to me. If the doc says that ask him why is he only testing what another gland is telling the thyroid to do, instead of the gland itself - and since around 20% of people have pituitary issues, how can just testing half (or less) of the hormonal loop only be good?
Thyroid is difficult to regulate under the best of circumstances and you had a lot of fingers in your thyroid pie, so to speak.
here are a couple of links that explain why the TSH is not reliable---and they are written by doctors--not naturpaths or chiropracter/naturpaths or any other "alternative" so called medical-type person.
i saw our local internist--he seemed ike a pretty nice guy--and was very honest with me in the fact that he told me this was way neyond him. he said i had two speciaists who gave me two different diagnoseses (SP?) his reccommendation, if i had teh resources and inusrance was to go to the mayo clinic, he said he would give me a reccommendation---like i could afford to pay for that in my lifetime!!!
right now, i really need to get my testosterone checked because the last time it was checked , over a year ago--it was bottoming out. 1.7 with a bottom range of 1.1 i recognize the symptoms. i am getting frustrated because i try to "accomodate" my husband as much as possible--but it doesn't seem to be enough for him. i am so sick of the little sex comments that i am supposed to interpret as being his "come on" to me. they are the same kind of comments he makes when he is just joking around and not really waqnting any romance---i can't tell the difference!!!!
I guess i am so mad because he knows i have this problem, and instead of encouraging me to get in to get my levels tested, he has a fit if i talk about anything medical---come on, guy, i need some support here!!! i don't need complaints becaue he doesn't get enough. when there is no drive, no libido, when the sensation is even starting to disappear, everything is dry and it is even starting to hurt---i just am not thrilled about a nasty (but not innappropriate" comment made to me that is supposed to get me in the mood!!
ok, sorry about really blowing off steam--and about this subject on a public forum, of all places!!!
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