Adrenal insufficiency while taking synthroid

[tina999]

Hi you guys,

I am a 28 female diagnosed with Hasimoto's.  I am very mildly symptomatic and it was caught by a TSH result of >150.  Positive for the TPO antibodies as well.  

I have twice tried med trials for the hypothyroidism.  The first was 75 ug of levothyroxine.  After five days the side effects got so bad I stopped taking it.  On the sixth day I went to the ER.

The endo tested ACTH, cotisone, aldosterone, TSH and T4 and said my adrenal glands looked fine and she wanted to start at a lower dose and titrate up.  I started at 25 ug for a week then 50 ug for a week.  On the second day at 25 ug the side effects were back and I went to the ER four times in the next two weeks.

I stopped taking the meds on the third day at 50 ug.  The endo brought me in the next day and ran an ACTH stim test which looked fine.  I tested myself for Adrenal antibodies which was negative.

Side effects were nausea, headache, inability to concentrate urine, trembling, muscle weakness, loss of peripheral circulation leading to numbness and no muscle control, and eventually delerium and giddiness with slurred speech and cognitive impairment. (hypovolemic hyponutremia ?) It took two days after the first med trial to feel more normal.  The next time it was much more tramatic to stop taking the thyroid meds as I woke up shaking and very cold or everything getting so slow I thought I was dying.  Also delerius spells through that weekend as (I think) the electrolytes balance was restored.

Off meds now I am fine.  I am at a new endo and he wants to have another med trial. It makes me cry a bit.

[Jimlow]

Hi, I'm glad your tests are returning normal. Isn't it amazing how we can feel so sure something like adrenal isufficiency will be found then it's not? I too go from thing adrenals, then back to Hashi's. I can understand why Docs and other people get to thinking we're "head cases". All I know is that the symptoms are not psycho-somatic and they can imply this from here to eternity but there is a medical, physical cause.
Many in the medical field have brought every symptom in the world under the emotional catagory, so that they can lable ANYTHING as this. If your hair falls out, it's stress, if you're dizzy-lightheaded, it's anxiety, if you are fatigued, it's depression, if you have joint pain, it's stress, if your BP drops when you stand, this too is depression, if you have hyper spells of heart racing, this is anxiety, if you have low tolerance to stess, this too is stress, if you have loss of libido, this is depression, if you have facial flushing-redness, stress!, constpation/diarreah, IBS-Stress.
I could go on and on but you get the idea. All of the above, of course can be true with ceratin people at certain times and because of this, the emotional diagnoses is used frequently and many people are no longer taken seriously. The vast majority of thyroid patients have emotional symptoms but what I always try to point out is how severe are the emotional symptoms, when compared to the physical symptoms? If you know your emotional symptoms are relatively mild but physical symptoms are severe, this should be a great big hint, that something is going on in the body that is causing exaggerated responses to even mild stress, that did not cause symptoms before onset of the disease. Antidepressants???, Fine, but not if something else is left untreated!
I vented once again, bare with me, I'm a passionate man!

[tina999]

Oh, also I went into the cardiologist.  The one day my blood volume got so low and I couldn't feel my hands as my peripheral circulatioin dropped I started having weird chest spasms on my left side.

I went to the cardio two days later and had an echo and they said my herat looked great.  The doc said it was an endocrine problem. Don't you love these guys.

[tina999]

Hi again you guys,

Jimlow I think I agree with you that we have something rare and wierd about our adrenal glands/ HPA axis.  I have a couple of ideas- high cortisone negatively effects the hypothalamus, causing less CFH and subsequesnt less ACTH to be realesed.  However what detects the low cortisone?  The med books aren't real clear about that.  They say stress causes upregulation but they don't know exactly so can't say. Our adrenal glands aren't broken, but we aren't responding correctly to the drops in cortisone and aldosterone that happen when we start the thyroid hormone.  The HPA axis is pretty complicated and my guess is that our's is misbehaving.  Perhaps our bodies sense the hypo state as "stress".  Constant stress increases cortisol and decreases the response of the hypothalumus to changes in cortisol.  Correcting the hypo state causes a massive clearance of the cortisol but our adrenals don't kick in and spit anymore out leaving us "adrenal insufficeint".  The HPA research is directed mostly at anxiety and depression but it could be very important in what we are going through as well.  (I am a dorky biochemist, thus all the rambly detail!)

I would like to start a simple website with our case histories on it.  I don't think drs are evil but they are unaware this is happening.  If I have five examples of others who have also had very poor responses and most importantly how they were "healed" it might open the eyes of the docs a bit.  If you guys would like to contribute let me know.  In theory I would need something like my original post with test results as well.  It needs to be short and to the point as they don't have much time.  It might even be of value to put docs treating these problems in touch with each other and establish some idea of what works and what doesn't.  I am thinking like a yahoo site or something but let me know if you have any suggestions.  My email is ***@****

I found one or two others with the same types of problems we are having on the thyroid newsgroup site so I'll ask them as well.

Oh reasons I am almost convinced it is a shortage of aldosterone giving me these problems
1) I felt so much better within 15 minutes of the ACTH shot as my cortisol and aldosterone levels shot back up. I could eat and drink again.
2) The only day I felt good on the meds was ovulation.  Estrogen spikes then, but mimics aldosterone and can bind its receptor.  That's why women retain water and bloat around PMS.  In my case I was just normal for a day.
3)I feel okay in the AM and horrible in the PM.  That fits with the secretory patterns of cortisol and aldosterone.  I would wake up okay and steadily progress to nightmarish by five o'clock.

I don't believe just gradually starting thyroid meds will fix the problem.  Today I see my new doc again and I think he will suggest that.  Unless he can give me a timpoint at which the suffering will end I think it is unfair to ask me to suffer when another option is available.  It hurts!

[ShannieK]

Hi guys, Finally got a hold of the endo today.  My MRI, came back normal on my pituitary gland.  She also did anothr 24 hr urine and cortisol AM blood test, that came back normal.  She tested a third time for aldosterone, testosterone, DHEA, and ACTH, all came back normal, however, as usual my ACTH was high again.  Believe it or not, she is sending me in tomorrow, to have it all tested again for the 4th time, she said if these tests come back normal again, she will pass on the CAT scan of my adrenals, because all seems to look normal after all.  She is going to be focusing more on my Hashi's.  I guess I might just be one of these people that are so sensitive to thryoid treatments and doses.  She said, all comes back normal on my adrenals, except the ACTH, which she says must just be caused by stress cause she is not finding any other abnormality anywhere, besides the fact that I never showed any signs of someone with an insufficiency, except one 24 hr urine on cortisol that came back low, I've had 3 others, that are normal. And I owe alot to you both as well as drmark who suggested the propranolol for the cause of the OI.  I have been suffering from that pressure in my head and everything for a year now.  I stopped taking those meds, and that whole thing went away, I haven't had a problem with it at all today. The other intresting part, is the whole time I was on those meds to control my blood pressure, my pressure always remained high!!!!  now that I have stopped taking the beta blockers, my blood pressure has returned to normal.  does any of this make sense?  I also think I mentioned that I think i've been overmedicated this whole time on my synthroid.  I have suffered from heart palps, chest pain and shortness of breath for one year, not to mention extreme joint pain, and since my last thyroid flare up a week ago, all those symptoms are gone also.  Could it really have been this simple all along?  I know my levels always looked normal, but with me, a .9, really made me feel terrible, the closer it gets to a 2.0, the better I feel.  Just goes to prove that everyone is different.  Keep in touch you guys, I'll let you know how my next tests come out.  Shannon

[tina999]

The docs are at a loss.  The symptoms clinically are those of an electrolyte imbalance and clinically point to aldosterone shortage.  I'll post more a bit later on that.   The tests are normal and then they backtrack and sayy it's adaptation to the thyroid meds.  It is wierd and they don't know what to call it.  I call it adrenal insufficiency.   My adrenals aren't broken but something isn't responding correctly.

Actually the thyroid meds cause my blood pressure to go from 110/70 to about 130/90.    I went in with no peripheral circulation-my hands were white but my blood pressure "looked" okay.   I am so confused.

[ar1281a]

Thanks jimlow. I really appreciate your postings and your research skills :-)

Tina999, do you know how your blood pressure was when you had these problems? they sound scary and severe, mine haven't been this bad.

We're all in the same boat in the quest for an answer. Thankfully, we have Drs that are willing to work with us.

Jimlow/Shanniek, I'm going in for the echo this week, my GP agreed that it'd be a possibility and it's better to rule it out.

Take care you all

[Jimlow]

Hi, first Shannon, I went off the forum and still will be for most part. This week I'm involved in patent renewal, of a product myself and five partners have been involved with since 1989. Once so often I look at messages, I wanted to reply to this one.
Tina999, like ShannieK, Ar1281a and you, I had problems with certain symptoms actually WORSENING after starting thyroid replacement. This promted me to search, which led me to the very websites, by the makers of the thyroid meds. They stated that people with UNTREATED adrenal cortical insufficiency (low cortisol), can experience worsening of their low-adrenal symptoms if they start thyroid homone replacement. It also took me to websites like the one by Dr. Shames, which you can find by going to "google.com" or other search engines and put in search-words: "the thyroid adrenal connection". You will be surprized at the info., click on the articles, including by Dr. Shames, very informative!
Some of us have also looked at Mitral Valve Prolapse lately, as another factor in making low adrenal symptoms worse. I believed from the beginning that MVP is only a possible peice of the puzzle and not the root-cause. These other sites state that worse adrenal symptoms after start of thyroid med., "unmasks an adrenal problem". I can relate to every symptom you listed but nausea has been mild and intermittant. Your cognitive symptoms (mental confusion etc...), I call "mind prattle" but this one too is fairly mild with me and mostly just makes things repeat over & over in my mind but does sometimes affect concentration too. I do get episodes of joint pain with mine too.
Shannon can relate to the fact that tests can show abnormal, then suddenly others do not, this even confuses the Docs. Drmark on here commented (very appreciated) on an ACTH Stim. test I got. He said my baseline reading of "10.7", which also doubled at 30pmin, then tripled at 1-hour, was fairy normal HOWEVER, what I didn't get to tell him is that my 24-hour urine test was low like Shannons (mine "10.7"). I also took many saliva cortisol tests, some low-normal, some borderline low and some 'clinically low' but NEVER in mid to upper normal! I think you Tina999, Shannon, Ar and myself, have a type of adrenal problem, very hard to detect because it is not quite full blown like Addison's Disease and there are aggrivating factors (ei:thyroid & MVP etc...). Treatment for less-than-full-blown, carries risk factors Dr.s simply don't want to take with us, understandably. I'm hoping/believing for positive revelations and is precisely why we search about things such as MVP but right now, it seems we are in kind of a "limbo" with this thing. Frustration is very understandable but we MUST keep researching!!!
Thanks Ladies.

[ShannieK]

Hi, I have been going through some similiar ordeals here recently, and have learned as much to know that if you have adrenal insufficiency, that starting thyroid meds, makes it worse.  This is what I have heard and read and been told by my endo.  My only question, is that since you've been tested and everything comes back normal, how is it, that they feel you have the adrenal insufficiency.  See, I too, am being tested over and over again, for adrenal problems, evidentally, everything points in that direction, however all tests come back normal.  Just curious.  Shannon