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Addison's Disease Message Board


Addison's Disease Board Index


[QUOTE] Your TSH is too high by today's standards (.3-3) but your FT3 and FT4 seem to be in ok ranges. I feel much better when my TSH is lower. So with a TSH that high, I would feel like garbage.[/QUOTE]

I do feel horrible. I just wish I could get back on thyroid meds, esp Armour.

[QUOTE]I have not had a stim test, but from what I have read, it looks like you have "passed". So while you have had some low readings, not sure. [/QUOTE]

I did plenty of reading up on secondary AI. I know I don't have complete AI, since I would have failed the stim test. But, there is room for accepting a diagnosis of partial AI, or at the least HPA axis failure, or dysfunction.

It is clearly shown in the low normal ACTH (or alost below range if one uses the older ranges that have 10pg/mL as the low end) and by the low DHEA-s, and resultant low testosterone.

[QUOTE]You really need vitamin D and iron. Try D3 - 1000iu daily and take iron daily to help. That will make a difference. Read the bottles so you don't take them when they interfere with the other meds. [/QUOTE]

I restarted my iron therapy. Obviously an increase in three points in a year is not sufficient. (was 20 feritin), so now I am taking iron twice a day.

The vit D I have just started on. Dr recommened 5000+ IU.

[QUOTE] There could be more going on, but your doc has not done enough tests - you could be going hypopituitary or more... does your doc treat a lot of adrenal patients - is he/she a neuro-endocrinologist? [/QUOTE]

What tests are you thinking of?

My dr is an MD who specializes in hormone treatments. I got his name through one of the adrenal boards. Apparently he does treat a number of cases like mine. He is willing to work with me at least.

I have spent a fortune! and many hours over the course of a year and a half to get this far. Most endos had no explanaiton why I could no longer tolerate the thyroid. I have been yelled at, humilated, and told to up my psych meds. I decided to find a dr who already practises the protocol I wanted to try - using cortisol to support thyroid therapy.
___________________________

I wondered if you had any explantion why I would feel "overstimulated" on a moderate level of HC, and why I experience the very bad dips in cortisol which precipate extreme anxiety? Do addisons persons have function of the adrenal medulla? I was thinking about some mechanism increasing my epinepherine when the cortisol wears off?

However, since I switched to AM only, the dips in their intensity have leveled off. I presume that in following the "traditional " treatment advice to take the HC before 8AM so as not to interfere with the HPA axis, seems to work better for me. But it is still a difficult time....not at all like I expected. :(

Finally, I do have a another variable in the mix - my psych meds. I was put on them (4yrs ago) when I should have been treated with thyroid meds and/or cortisol. They are Seroquel and Lexapro. I read that the Seroquel, even in small doses as I am taking (after tapering last year) can still significantly lower ACTH and cortisol. The Lexapro lowers T4.

I don't know if my HPA axis has been permantnely "down-regulated", which is the purpose of the Seroquel, and neither do I know about the long -term effects of SSRIs. I never should have been put on these drugs, esp. Seroquel, since I was already "down-regulated" becasue of my existing endocrine disease.

My medical records show I was already hypo 4.0 TSH and .9 FT4 in 1995! If only I had known!

To say I am distressed over my situation is putting it mildly:mad:
Hiya hon
I am currently just tolerating 1 3/4 grains of Armour, I am having problems with anxiety too when I raise, takes ages for me to level out and I feel wiped out and breathless, however I am still nowhere near as wiped out and breathless as I was when I was on Levothyroixine.
I had a scary episode on that when I became confused, vomited, dizziness (I had had periods of dizziness for months) and apparently my pupils contracted and then relaxed when the doc shined the light in, I was admitted to hospital and they found nothin on a CT or any other problems. I have high BP and due to the confusion I suppose thats what the CT was for, but they did not put the episode down to anything at all.

So I have the problem of low saliva results for cortisol and no doc who is willing to prescribe me anything for it because my am cortisol was considered within range. My ferritin was 60 when I had it tested not as bad as yours. My B12 was also within range but when I took some my peritonitis stopped (gums had been bleeding for months and was getting infections) and I could breathe better.

Your question about the intolerence, yes I do to a certain extent have that as I explained I feel rotton on a raise, I understand when I raise I should be increasing adrenal support for a while each time, however my adrenal support is insufficient anyway as I cannot get hold of hc. The reason I mention the ferritin is that on the sites I have been on really regularly they always point to that as a major issue if you have problems tolerating armour or t3 and I do believe Janie says why in her book Stop the Thyroid Madness.
I honestly think a lot of this stuff happens because we suffer malabsorbtion due to our slow metabolisms and vital nutrients are missing. I am trying to put all that back with supplements. I use magnesium and calcium and the magnesium helps with muscle spasms. I use B comples sublingual, B12 sublingual, garlic for inflammation, vit c high dose for adrenals, adrenal cortex extracts sublingual, turmeric for inflamation, iron and vit C tabs, multivits, Q10, Vit D3 and unfortunately I am also stuck with old stuff from the seperate diagnoseses of depression and anxiety over the years, diazepam which unfortunately uses the T3 transporters, Seroxat, I am on Bp lowering meds which interfere with my Aldosterone called Olmatec and a water pill.... catches breath lol.
I am STILL looking for a suitable doc. One thing that did happen since I went on Armour which is worth a million, is that I no longer take my asthma meds as much, and the pains come and go whereas on Levo they were always there and I don't have as many black moods. I am still way under dosed so I do still have a lot of problems. That is why your post struck my eye. Adrenal issues are close to my heart, I read loads of forums and take part in quite a few to try and further my knowledge of this darn disease. I also read with interest papers on AI thyroid problems and adrenal issues. I also have a great interest in nutritional disorders and their relationship to anxiety disorders and mental issues.

Sorry to ramble lol.

God bless
Whitters
Yes, I am sure you have suppressed your own function by now. I wondered what your adrenal function test(s) showed, and what your doctor's protocol is.

I tend to agree with those who say that usually one needs a full replacement dose, e.g. 20 mg HC per day total. The only problem with this is if the patient (like me) has a hard time tolerating the HC itself and dealing with the dips in cortisol throughout the day.

I have heard that (and my dr mentioned) the possibility of using a long-acting steroid. It is not as good as HC in terms of it not being as close as possible to bio identical, and other problems with long-acting steroids that are said to exist. I did have recommended Medrol to me by my dr and on a few forums, I have read about people who seem to have success with this, when the short-acting HC is not working out.

I chose not to go this route ....though I may change my mind in future, since I had also such a hard time with the HC itself. I don't know what was the cause, maybe it was the lack of cortisol in my body for so long that caused a sensitivity (as my dr suggested), or it could be from the mineralcorticoid effect of the HC (it seems different steroid have different minerocorticoid effects). I do know that I have some kind of predisposition to anxiety and depression due to low cortisol and this compounded the problem for me. I really don't know the total answer.

I too thought it would be an easy path to start the HC and then back on the thyroid meds. I am sorely disappointed. :(

I stopped my HC exactly two weeks ago after tapering down (2.5 mg/week after shifting to a morning only dose). It was not easy. The past two weeks have been pretty nasty. The old symptoms subsided, like those surges and palpitations I experienced after taking the HC, and the EXTREME anxiety and sometimes crying jags, and crippling fatigue during the in-between dose times...especially in the middle of the night. So bad it would wake me up in a panic. I felt better reading on pubmed about the psychiatric manifestations of untreated addisons (for the sake of discussion low cortisol) can include anxiety and depression.

All that has stopped. Now I am just normal super fatigued, with a little residual anxiety...though that is likely due to my adrenals still being suppressed - and of course the hypo. It is hard to tell what is what. BUT, I can say that the negative effects I experienced from being on the HC have subsided. No more ups and downs:)

I have been profoundly dizzy and nauseous for nearly the whole of the two weeks. Luckily, I just have a little dizziness now, mostly when I drive :dizzy:

I was starting to despair that I would ever get better from these new symptoms. So, I turned to the internet. I found some info on symptoms of suppressed HPA axis, and I fit the profile with the dizziness and nausea.

Unfortunately, I found mixed opinions on how quickly the HPA axis resumes function from being suppressed, and also adrenal function itself. I found on a medical school website some excerpts from an internal medicine book in Q& A form, where it was stated that HPA axis is suppression is pretty much certain to occur even a t physiological doses, ESPECIALLY if the steroid is taken throughout the day and at night. Pretty much my profile and likely yours.

So, where some say two weeks, others say longer. Everything depends on the individual's response, the amount of steroid, the length of time it was taken and whether the patient dosed throughout the day. So, I suspect I am looking at 2-5 months for HPA axis to resume as this one excerpt says. And, it can take longer for the adrenal glands themselves to recover full function (what ever "full" was before presumably) I decided that if at the two week mark all was not greatly improved , I would start assuming that mine will be the longest of possible recovery times, so I can stop fretting.

I have been getting a tiny bit better on the dizziness, nausea front every day. It is certainly better than what I experienced on the HC.

If, in the end, I go downhill, because of the length of time my HPA axis and adrenals are suppressed and somehow it exacerbates the hypo part of my illness, and I go completely to pieces, I will consider trying the long-acting steroid.

Hope this is not too long and that you find it of some help.
Thanks for the post.

My cortisol was...

AM 10 (13-24)
Noon 4 (5-10)
PM 3 (3-8)
Midnight 22 (1-4)


My doctor thinks that my adrenals are pretty bad, but same as you, I am stopping Cortef. I tried it for a month and I felt worse then before I started it. If the reason I felt worse was because I wasn't taking whole 20 mg, what can I do, more I took worse I felt. He wants me now to try two different things, but first one then another one. One is anti fungal meds. He thinks that there is a possibility of yeast, and there is no way to test for it but to try meds. If I don't feel better in two weeks then I'll try DHEA. He said since Cortef did not worked we need to take back door approach. I can do one or another first, I think I might try DHEA first, not sure yet. I did tried it few years ago and it did not work, but I am willing to give it another try.

Have you ever consider slow release Cortef? I am sorry if I asked you this before. I have, but only 2.5 mg 2x a day, for two days only, and I felt awful. Maybe dose was low, but I never try different dose.

I also think that big part in all this is being too low on everything for years. I had anxiety and PA since I was 20 (I am 50 now) and I had hypo symptoms several years before I was diagnosed. I was anemic last 10 years al least if not longer. All that is telling me that my adrenal and thyroid function was low all that time.


I am glad you are over with HC for now. I didn't take my pm dose yesterday and today I only took 2.5 mg so far. My doctor told me that I can just stop because I was not taking high dose, but I was getting very sick this morning so I took 2.5 and it helped.

How is your TSH and Free's, and what dose are you on for Thyroid?

I am taking .31 grain Armour 2x a day, and I am trying third dose, but not every day. I think there is a hope, ha ha, unless stopping Cortef effects me negatively.

I can't say that I regret trying Cortef because it was reasonable thing to do, but I am way worse now then before, and I am tired of feeling like this.

Thanks
I agree with Rumpled about your elevated evening cortisol.

I am on no thyroid meds as I cannot tolerate any at all. I tried recently twice and could tolerate nothing. I wasted about six months on that experiment...thus, why after a full year of thyroid meds intolerance, I was desperate enough to try the HC.

I may consider the SR Cortef in future as an option.

I just want to wait to see what level of adrenal function returns before I rethink my treatment plan. If you haven't read my other posts, I was put on Seroquel and Lexapro some years ago as a result panic anxiety and depression I was suffering from . It has been going on since my early twenties, if not from my teens.

Of course, no one noticed at the time, my hypo condition, and likely I always had concomitant adrenal issues, since my old medical record (recently discovered) showed I had a TSH of 4. something in 1995!

The Seroquel lowers cortisol. I am on and have been on for over a year on ly 25 mg. The therapuetic dose is 150 or more, usually 300+. I started tapering psych meds after I felt SO god on thyroid meds, and stopped taper after I started having the intolerance to the thyroid meds.

My recent experience with low cortisol - panic, extreme anxiety, periods of crying, being all over the place mood-wise showed me what physcial mechanisms are at work with regard to my "psych illness", and encouraged me to reduce the remainder of the Seroquel.

I am halfway there, and at this point, it is a race against time. I am so low in terms of adrenal function now that I have suppressed my function as a result of being on the HC, that I must get off the Seroquel asap. It is really throwing a monkey wrench into things.

I found some lit on pubmed saying that doses of 25 -50 can significantly reduce cortisol. So, I had thought I was ok at this does, and now, I see that it may have been enough to thrown me into some seconday AI, and cause the intolerance to the thyroid meds.

I would love to quit the Seroquel althogtether, but I have to go slowly, to avoid withdrawal symptoms. So, must be patient.

At the moment, I am sooooo weak and fatigued . A new development is breathlessness. I am a bit scared, but must keep going. Anything (almost) is better than what the low cortisol episodes were like during the course of the day while on HC. If I had felt good after taking the HC, instead of surges of adrenaline feelings, I would have considered working with the HC longer.

Anyway, I have traded one set of problems for another, but it seems that this is better. I am afraid that I have put myself in a precarious position with regard to my adrenal function, but I have to believe that it will get a least a little better. :confused: I'll give it a little longer.
[QUOTE=dalmatinka;3698775]Hi sparkles, I will tell you about my intolerance and struggle with medications, hopefully it may help you some. I started having intolerance 5 years ago, when my Unithroid dose was increased from .25 mcg to .50. I had severe anxiety and PA, and irregular hear beats/ skipped beats on T4 meds. I tried different brand of T4 meds and had same or worse reaction. I was put on Armour, I think half a grain, and it was not much different. I went to dozen off different doctors, and finally one doctor prescribed compounded Armour, started me on 1/8th of a grain two times a day. From the first time I took it I loved it. It gave me sense of calm and my anxiety was not as bad any more. I had less energy and was sluggish almost all the time but anything was better then anxiety I had before. I was increasing very gradually, (compounded pharmacy can make you any dose you want) first morning dose, then weeks later pm dose. It would take me months before I would get comfortable on each dose increase. That's how I got to taking .31 grain now, two times a day, and just recently I tried third dose and I think it might work. [/QUOTE]

What is the difference between Armour and compounded Armour?

I tried everything too. Last dr (very expensive) put me on 1/2 grain armour. I knew it would be too much, so I tried 1/8 grain, but eventually and then 1/4 grain once a day. Eventually, as every time before, the small dose began to supress my thyroid function and I felt even worse. I wanted soooo badly to raise the dose. From the moment I started the intolerance was there and I just wanted so badly for it to work this time, believeing if I went slowly, I could get there.

I went off thyroid meds in Jan. Had a hellish time off, I think it was the adrenals, since I had the exact same "pyshco" anxiety (really, really, bad, like run down the street in terror anxety) when I had the low cortisol dips (esp at night) when I was on the HC. Then I went back on with the expensive dr in Feb. Then off again in March. Suffered tiill the end of May. Saw new dr who prescirbed HC. Been on a rollercoaster of craziness till a few weeks ago. :(

[QUOTE=dalmatinka;3698775]I was suggested to try that before but with iron in between and having to eat it was hard to find time. I don't care now if I have to take T meds sooner then 4 hours apart from iron, I am still getting more./QUOTE]

I have been working on my iron for a few months. I take ferrous sulfate elixir (liquid behind the counter) 44mg elemental iron, 2x per day. My ferritin was 21.


[QUOTE=dalmatinka;3698775]I took 2.5 mg Cortef yesterday because I was really getting sick in the morning, I struggled thru the afternoon, but was ok in the evening. I did not take any today and I feel better. [/QUOTE]

How is the cortisol weaning going? I think my adrenal condition is improving. I made the mistake of going to the dentist some weeks ago, I wondered if I would live. I was only just two weeks off the HC. Well, I went back for a follow-up the other day. Felt shaky at first, then by the time I went home I felt good - mood was better than usually. I figured that my adrenals had kicked in during stress....keeping fingers crossed.

But, still feel over all like crap. Especially mood is flat, and no energy, but slightly improved stamina and recovery. I have been doing laps at the pool and seem to fare much better and recovery is not all day or next day :mad:

As you point out, my symptoms could be from the Seroquel tapering. In the beginng, during the two weeks following no HC, I had prfound dizziness and pretty stong nausea. Mostly, this has passed. The residual symptoms of no nergy and flat mood vary throughout the day. Like today, I was pretty tired and flat, then around 5:15 just like a flash I was awake and felt "better". I think that the little ups and down correlate with cortisol variation - which while still low overall, are affecting my energy and mood.

I was feeling better mood-wise earlier, but now not so much, and this, I think is definately a Seroqel withdrawal problem. I had to speed up my taper, since with my adrenals and HPA axis being suppressed, the nightly Seroquel gave me a super low trough of cortisol and I was waking in the middle of the might in a panic after the Seroquel sedative effects work off like 6 hours later. So, the quier I tapered, the less intensely this was happening. I hoe this nightmare ends soon, I have about 1/3 more to go on the Seroquel. 2.5 mg per week of ten days, though I may strech it would more slowly now that the mid-sleep low cortisol awakenings are a little better.

Incidentally, about two weeks into the HC trial at 15-20 mg, I started to have this occur each night after I would take the Seroquel....that it would produce a superlow cortisol in the night. I have not slept uninteruptted for more than two months. I thought I would lose it!:mad:

[QUOTE=dalmatinka;3698775]Are you still taking Lexapro? Some of your symptoms might be from decreasing dose in Seroquel, but I think it would be wise to get off of it asap. I was on xanax for years for my anxiety, and like you, I was probably hypo all those years. My TSH 12 years ago was 3.5, and my T4 was in the bottom range. It took me long time to get off of it and it was not easy, that was before I was diagnosed with hypo. Then I was put on klonopin when I started having intolerance to thyroid meds, that was also very hard to get off of, but thankfully I was on a very small dose. [/QUOTE]

I am off the Lexapro and have been for sometime. I still take ativan, but as inflrequelty as I can. I can't wait to be off all this stuff and get back onto the Armour. I felt so happy, calm and energetic for the short time I was able to tolerate it. :) I don't know how long the adrenal supression will last, but hopefully a few momths down the road, if I survive, I will retest my thyroid and adrenals and see what the lay of the land is. :wave:





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