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What to ask dr. - is this secondary AI?
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What to ask dr. - is this secondary AI?

I apologize for the length of this!  :)  I figure more info is always helpful.
Just in case - this is my post on another board w/all the labs, history, etc:
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To summarize - I am currently 42.  Was very healthy and active prior to this all starting.  Since 2005 I have felt increasingly worse, with the past 18 months being debilitating - fatigue, wt. gain around middle despite tennis, pilates, aerobic exercise and a very healthy diet (now I have dropped all exercise except for 15-30 min of very gentle and that is exhausting), cold and heat intolerance, body temp usually in the low to mid 97's, cold hands and feet, brain fog, more fatigue (ha) (had to quit my part time substitute teaching job in October and am good for less than an hour a day of anything more than sitting).  I did a questionnaire from the internet and it was about 50/50 for adrenal and thyroid issues.
I have been tested for a whole bunch of auto-immune diseases, viral things, vitamin deficiencies, echo-cardiogram of for heart function - all were good.
In November I was finally able to get into an endocrinologist and she did some labs and an ACTH stim test.  These are the results (fasting, 9 am):

free t4 .84 (range .59-2.19 ng/dl)

tsh 3.13 (.465-4.68 uiu/ml) I have had a steady increase from my first test at 2.1 a few years ago.

t3 free 3.36 (2.77-5.27 pg/ml)

cortisol am 7.6 (4.5 - 22.7 ug/dl) 1st time tested was 3/12 and was 10.9, all tests since then have been in the 7s.

acth stim test cortisol levels - after 30 min 23.6, after 1 hr. 28.7

acth before stim test started 14 (10-60 pg/ml) only time tested

The endo put me on 25 mcg of levothyroxine and said to re-do labs in 8 weeks, meet with her at 9 weeks.

1/9 was the 8 week blood draw, they only did TSH, and I don't know if I will get the results before my visit next Wednesday.

?????  In your experienced opinions - should I ask for any of the other blood tests that test pituitary function?
?????  Does the ACTH of 14 and cortisol of 7.6 indicate that would be beneficial?

?????  Or do you think that I should let her mess with they thyroid meds and leave it at that? I know it is hard to offer advice on this since I don't have the new TSH number.

Basically I feel just as badly as I did before starting on the medication. I have been very careful to take the meds in the am and not eat for at least 30 min, have stopped looking up anything online (putting my belief in her plan and trying to not undermine it) and, after 6 weeks, tried to start adding in a few 30 min easy, non impact workouts a week to make sure the severely decreased activity levels aren't contributing to the fatigue (so many people keep telling me I will feel better if I work out and get some endorphins going. Not helping, though.  2 1/2 years ago I was playing singles and doubles tennis matches without a problem, this last year I could barely do doubles with a big energy drink.  Stopped entirely in the fall to get off the energy drinks and give my body a rest.)

After sleeping well for 8 hrs, on Sunday I went to the grocery store for about 15 min, came home at 9:30am and fell asleep for 1.5 hrs. Took the kids with the husband to the zoo, s-l-o-w-ly walked around for about an hour before I felt miserable, slept all the way home and was useless the rest of the day. Pretty sure I am not seeing any improvement on this plan.

Thank you for any advice going into this. I am worried that if I am 'difficult' she will stop seeing me, and she is the only endo who has agreed to see me at all since my numbers are in range. Any suggestions will help me know what to push for and what to let go.
I am also back into researching online so that I can go to her with my back up information.

Thank you so much,

Suzanne

16 Comments Post a Comment
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657231_tn?1390151580
Technically it looks like you passed the stim test. Do you have low blood pressure, low sodium and wonky potassium numbers? Was the ACTH taken in a chilled tube, spun IMMEDIATELY and frozen promptly? If not it could be low just from lousy lab handling.

Your TSH is abnormal - the new range is .3 to 3.0. That is not good - the doc should know that. My doc likes my Free T3 and FT4 to be in the upper parts of the ranges. So it looks like, IMHO your thyroid is a bit wonked - any antibody testing?

Any vitamin D, iron and other testing? Fatigue is a real hard one to figure out.
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I am answering each quesiton in reverse order.  :)

I am good on iron, high on D (I was actually high enough that she reduced the amt of the supplement the pcp had me taking), and the pcp has tested for lyme, epstein barr, mono, tsh antibodies, did a few tests that she uses to look for chronic viral and auto-immune markers, plus more.  A dr. that I went to in March did a laundry list of testing as well that all looked in range, and I have had two blood panels that are all in range.
The endo is giving me the 25 mcg of levothyroxine, but I have had no noticeable change in how I am feeling, esp in regards to energy.

I did increase substantially in the stim test, which rules out primary AI, but the quadrupling from a low cortisol number, still seems to include secondary AI (based on internet research :) ).  
The endo's office has a lab tech who takes the blood and starts processing it while you are still sitting in the chair.  I don't know if the tube was chilled, though.  I did read in several places now that ACTH should be in the top third of the range (40+), and I am way below that.  
The last pcp also told me that the optimal cortisol level would be 20-22 and I am nowhere near that either.

In 2005 at a physical my bp was low enough that the nurse took it twice, then made me stand up to take it.  That has been the pattern since then, but they don't seem to feel it is low enough to warrant concern (usually 90-something over 60-something).
Potassium and sodium were in the middle of ranges when they were tested in 03/12.

I didn't realize that I couldn't post the link to my whole history of symptoms and labs - it got starred out in the original post.  I can copy and paste it in if  it would be helpful.

I have seen 3 pcps in the past 15 months, plus the specialists and finally this endocrinologist.  I tried to put it all out there with the first two doctors (the 1st was referred by my ob/gyn, the second was off of a thyroid board recommended dr. list) and let them be the experts.  One told me I was tired because I had two kids (10 and 12) and she would put me on a stimulant.  The other told me to quit my part time substitute teaching job (which I love and brings me a lot of joy) since I was too tired to work part time and take care of my family.  
With the third dr. (recommended by a person in the thyroid support forum) she encouraged me to be a partner in the process, but then she started saying her intuition was leaning towards dietary issues and adrenal fatigue (to be fixed by supplements).  When that didn't work she said she had no idea what to do with me.
Now I am trying to be totally prepared going into this next appointment.  I gave the endo's thoughts an honest shot to no avail, so I am hoping to have some ideas typed up before going in.  I honestly think I (and the husband and kids) will have a royal freak out if she just adjusts the thyroid meds and makes me wait 9 weeks each time until we get some results.
Everytime a dr does the initial work up and asks if I am depressed I laughingly point out that I WASNT when this all started, but with every visit I think I am getting closer.  eek.

Thank you so much for your input.
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Suggest finding an integrative doctor who knows how to treat thyroid adrenal issues.  Your morning cortisol appears to be low and your thyroid results show hypothyroidism.
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Suggest finding an integrative doctor who knows how to treat thyroid adrenal issues.  Your morning cortisol appears to be low and your thyroid results show hypothyroidism.
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I was working with a Harvard Med school graduate with 20 years of practice, who moved into integrative and intuitive medicine several years ago.  She provides a good balance.  I have seen her for the past 8 months - she is the one I mentioned who did so many tests and treated the adrenals with supplements while trying to figure out what was the root problem.  However, in December she said that she had no idea what to do at this point and that add'l thyroid and adrenal treatment needed to be with an endo.

The endo is currently treating the low thyroid with 25mcg levothyroxine with no improvement in the 9 weeks since she started me on it.

I know my cortisol is low, since optimal is 20-22 and I am at 7.x.
My only ACTH test shows 14 in a range of 10-60.  The only info I have been able to find for optimal has been the top third of the range, which would be high 30's and up, so that is low.
Cortisol quadrupled in the stim, ruling out the adrenals as a cause, but the symptoms and lab results still leave the pituitary as a possible root cause.  If it isn't making the hormones to tell the adrenals and thyroid to perform, then that would explain everything.

I was hoping that someone here might have experience with secondary or tertiary AI and be willing to tell me what they thought, or what they might recommend for the dr. visit.

Thanks,
Suzanne
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657231_tn?1390151580
Links are not permitted - especially to other boards. It is a violation of the rules here.

It actually does take time for a T4 medication to work hence the time between adjustment and testing. It takes at least 6 weeks to really know. It is a storage factor and it converts so you have to give it time. I had a bad couple of years once trying to get the right dose so I understand the time factor is not fun.

I always tell the docs I am frustrated [with them] not depressed... hah.

The BP dropping when you stand is called POTS - postural orthostatic tachycardic syndrome. It may or may not be related to an adrenal issue - in other words many people have it without an adrenal issue but I think most of us with adrenal issues have it simply due to our cruddy low BP.

Primary means adrenal source - often that means ACTH is super high as the pituitary is trying super hard to signal the adrenals to make the adrenals work and there can be an auto-immune component to it. Secondary is pituitary source and ACTH would be low. It sounds like that perhaps the sample *might* have been done correctly but you don't know if the tube was binned or spun - and ACTH simply degrades in minutes...

As for where you should be in the range - eh.... ACTH and cortisol can vary a lot. I used to have docs say oh you should be in xx part of the range - the only one where I follow that is thyroid. Lots of the pituitary hormones are pretty variable hence the stim testing. It is not perfect though (I failed every stim test for Cushing's and still had it! but that is a known issue for cyclical patients like me).

I don't follow the adrenal fatigue school. I know the adrenals can get diseased but tired? Lungs get diseased, but tired? Does your skin get tired? Your body is built for a lifetime - but we do get diseases, auto-immune stuff etc. There is a problem it just is not diagnosed.
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I would suggest with the Adrenal issues in having at CT of both kidneys(adrenals sit on top of kidneys) you may also want to have your Pituitary gland(brain) scanned as well. My Adrenal issues are from a growth on my R Adrenal gland but doc won't remove it because it isn't large enough. I feel like hell to say the least and nothing seems to help. I wish you all the best and when having your test for Adrenal and ACTH be sure you aren't taking any medicines that may alter the results there are a great many that can change the results significantly. Best wishes.
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I have secondary AI from exogenous steroid use and subclinical hypothyroidism as a result of the AI.   I was damaged by Prednisone and my adrenal glands aren't producing anything.....I take Armour thyroid, hydrocortisone, DHEA and progesterone cream and function at about 40% of pre-illness capacity.
The thyroid is th gas pedal and the adrenal gland is the engine.  Saying adrenal glands either work 100% all of th time or not at all is like saying the heart either works 100% right or not at all, or saying the kidneys either work 100% or not at all, or the lungs...I guess nobody has COPD???  There can be varying degrees of dysfunction with every part of the human body.  
Research shows that POTS has adrenal involvement too.  POTS is supposed to be a malfunction of the autonomic nervous system which is the hypothalamus.  The hypothalamus controls adrenal function via the pit.  I know someone whose daughter is being treated right now at the POTS clinic in Houston and the adrenals are definitely involved.
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When cortisol is low th body cannot convert T4 to T3 which causes subclinical hypothyroidism.  I had this problem and 2 endo's gave me Synthroid which caused me to have an adrenal crisis after 3 weeks of taking it.  My neck started aching, shooting pains down my legs, blah, blah, blah and I almost died.  I need a T3/T4 combo thyroid medication and neither would prescribe it.  I almost died before I got to another doctor with a brain.  You may need a different thyroid medication.  T4 only medication (levothyroxine) is what only a small portion of hypothyroid patients need.  
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Oh, TSH doesn't matter.  The only thing that is important is FT3, FT4,and RT3.  If you have subclinical or secondary hypothyroidism along with relative adrenal insufficiency then the TSH will be within the supposed normal range.  It takes an astute doctor to diagnose secondary and tertiary AI along with subclinical hypothyroidism.  Most endo's practice diabetes and know little about the adrenal glands.  Suggest finding an adrenal expert....where do you live?
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I live just NW of Denver metro.  I got the name of the endo that I am seeing (the second visit will be today) from an adrenal insufficiency forum, and her list of 'specialties' includes diabetes, adrenal diseases and pituitary diseases.   I have a friend who is under an endo's care for thyroid issues, and her dr. won't even make an appointment since my numbers aren't bad enough.  

Thanks for all of your suggestions!  I feel like it is depressingly difficult to get a dr. to listen and not just tell me that I 'look fine', have two kids (so of course I am tired), and my numbers aren't that bad.  aargh.
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Dr. said my new TSH is 1.38, so down from 3.13 9 weeks ago, but I still have the same fatigue and inability to have any normal activity level (this visit today and a quick stop at the store required a nap when I got home).
She is switching me from the levothyroxine to Armor, with new labs in 6 weeks and a dr. visit in 6 months.
I asked about the cortisol being 7.x and about my pcp saying optimal cortisol is 20-22.  She said that 20-22 is too high and she would be worried about high cortisol issues, that where I am is in a healthy range.  This totally confuses me - I would have thought that I would feel better if my TSH dropped that much, and everything from the pcp and online says that my cortisol is way too low (what I have found is that anything under 15 indicates that a patient should be tested for AI, anything under 10 indicates very strongly that there is AI, anything under 10 that more than triples in a stim test should be looked at for SAI - mine quadrupled).
What do you all think?  Is it time to start looking for another doc?
I am thinking that if I don't feel better in a few weeks I might try to get into the University Hospital endo office (she said that the Armor effects should be felt w/in 2 wks).
TIA, Suzanne
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I had a normal ACTH Challenge test in July 2011 which was normal, had a respiratory infection this last October that nearly wiped me out, and my ACTH Challenge test was repeated. I insisted on having it done at 8AM when your natural cortisol levels are highest, and it was very abnormal.My baseline cortisol was 2, and only went up to 12 after the cosyntropin injection. My endocrinologist was convinced it was going to be normal again, but he was wrong.
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657231_tn?1390151580
Not every lab has the same ranges so just to say *under 10* to me does not take into account the lab, the ranges and the person.

Catlady is correct - you can pass a stim test and still be sick and the doc should always test at 8am (there is another thread on that too).

Keep in mind this is a salt wasting disease so as long as your sodium and potassium is normal, odds are it is not a low cortisol issue and may be something else. Fatigue is not a specific enough symptom to say it belongs to *x*.

I hope you feel better on armour.
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Armour was a better choice for me because my cells could not convert T4 into the usuable T3 hormone because of low cortisol.  When cortisol is low, many have conversion issues and the body will turn the T4 into RT3.  I'm surprised that you found an endo that will prescribe Armour.  Where do you live?  Knowing what I know now....if I didn't feel better in 4 weeks I would be looking for another doctor.
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I had high cortisol and did not convert T4 into T3.

I take cytomel and T4 so I can control the ratio - armour has too much T3 for me. It is Sharper that has it now - but several endos I have run into would, and yeah, some are dingbats and are on the *T4 only* bandwagon and would not even give me cytomel. I did not stay with them at all.
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