Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Vindicated: adrenal insufficiency

with 9 comments

So, first off I want to start with a scan of my thyroid hormone test results.

Thyroid test results

The dates listed aren’t the dates the tests were taken, they’re the dates the results were received, there was about a week between the first and second test.

As you can see, my TSH is too high, and despite the rather dramatic drop in T4 over the course of a week, my T4 is still allegedly “within range”. By the time the second test was taken, I had a lump in my throat and had carpal tunnel syndrome. According to the GMC here in the UK, anyone with a TSH of under ten is only “subclinically hypothyroid” and their symptoms must be psychosomatic. This is despite the fact that every other civilised country is going in the opposite direction and revising their upper limits for acceptable TSH downwards. In the US anyone with a TSH of over 3.0 is supposed to receive treatment (though they don’t).

What I am able to note now I have a copy of these test results is that whilst my doctor bothered to measure my thyroid peroxidase (TPO) antibodies, she did not measure my thyroglobulin antibodies, which is remarkably irritating as she pronounced me as not suffering from Hashimoto’s on the basis of incomplete knowledge. On top of that, the TPO antibodies do not give an actual figure, and only say < 35.0, which is meaningless. What if my antibodies measure 34.0? In the US, the acceptable antibody range is much lower. Specialist thyroid doctors consider antibody results above 2.0 to be abnormal.

According to my GP, my anxiety attacks have nothing to do with my thyroid, despite the fact that hypothyroidism is known to cause anxiety attacks.

So I’ve gone to the trouble of having a saliva cortisol and DHEA test done privately. This isn’t an officially recognised test, but it isn’t bunk either. It is used by labs for clinical studies, considered reliable, and is being assessed by the FDA for official use.

This is what twenty years of allegedly “subclinical” hypothyroidism has done to my adrenal glands:

Cortisol test graph

Cortisol test results

In case you can’t read the table above, here’s a text copy:

Cortisol:

8:00am 13.5 (range 12.0 – 33.0)
12noon 1.6 (range 10.0 – 28.0)
4:00pm 2.2 (range 6.0 – 11.8)
midnight 10.4 (range 1.0 – 5.0)

DHEA Sulphate:

8:00am 6.5 (range 9.0 – 24.3)
12noon 1.2 (range 6.0 – 10.9)
4:00pm 1.4 (range 4.5 – 8.0)
midnight 2.1 (range 2.3 – 5.0)

Salivary Cortisol profile: erratic hormone output – Noon and 4pm values below reference range and midnight result above reference range.

Salivary DHEA-s profile: All values are significantly below reference range indicating poor/compromised hormone output on the DHEA pathway.

Overall comment: Suggest repeat profile in 3 to 4 months following medical consultation to monitor progress.

I actually predicted this, including the shape of the curve, with the unusual peak at night. I actually predicted I’d be at a stage 4. In fact, I’m almost at a stage 5.

I suspect that part of the reason I went downhill a couple of months ago relates to my cortisol output crashing as my adrenals started to give way. Too much or too little cortisol can cause problems in converting T4 to T3 and in utilising T3. I have no idea what my T3 level is, but based on the lack of cortisol, I expect it’s very low. For some reason doctors don’t test T3 levels, something I find bizarre, since T3 is the actual active hormone used by the body.

Adrenal insufficiency is the reason I’ve been having anxiety attacks at night. The first thing I know of these anxiety attacks is an actual feeling of adrenaline being released from my adrenal glands, manifesting as sparkly sensations above my kidneys. They aren’t coming from my mind.

This is why I feel so faint and shaky in the afternoons and have to be careful of standing up too quickly in case I black out, and why I sometimes have to go back to bed.

This is why I am completely intolerant of all stimulants like caffeine, which put me on the verge of collapse.

This is why I am intolerant of stressful situations and have a great repertoire of stress-avoidance behaviours.

This is why I have suffered from reactive hypoglycaemia for years – being unable to raise my blood sugar with cortisol, my body has to resort to the use of adrenaline.

I wonder too whether this has anything to do with my complete inability to feel anger during the last two or three months.

This is why I have such vile withdrawal reactions to tiny amounts of topical hydrocortisone.

Because my DHEA output is far too low, my sex hormones are probably far too low too, particularly testosterone and progesterone.

Meanwhile, the doctor has been busy giving me beta blockers to suppress adrenaline and saying “there there, you don’t have a thyroid problem, you have Generalised Anxiety Disorder, a psychological condition.”

Bad medicine indeed. If my adrenals were in a worse shape than this, administering thyroxine without first performing these essential tests could have resulted in me ending up in the emergency department in full adrenal crisis.

Fortunately, despite a horrible first night on an increased dosage of thyroxine (now raised to 50mcg), I’ve weathered the increase. I have been taking my thyroxine at night, reasoning that the time I have the most cortisol is the time I am most able to utilise and convert thyroid hormone.

I’ve been sleeping through the night – sleep seems to be absolutely essential for my adrenal health the next day. I’m still having attacks of faintness and adrenaline release. I’ve had a good week since increasing my dose, though I seem to be going downhill a bit again at the moment, my body temperature is far below normal again (36.0), possibly because at this time of the month my adrenals are trying to make sex hormones in favour over cortisol. I wish they’d just give up on that and focus on giving me what I need.

I suspect that most people who are hypothyroid with high cholesterol levels are to some degree suffering from adrenal fatigue or insufficiency. Cholesterol is the precursor to all adrenal hormones. High cholesterol levels indicate to me that the adrenal glands are not converting the cholesterol into pregnenolone, and then onto DHEA, progesterone, cortisol and so on. This may simply be because the body’s metabolism has been lowered to the point where the enzymic reactions are not taking place as quickly as they should be, due to a lack of T3. This creates a vicious cycle, in which a lack of cortisol means T4 cannot be converted to T3 and the T3 can’t be utilised, and a lack of T3 prevents the production of adrenal hormones.

I suspect that in my case, I will probably be alright to continue without adrenal support, since I have improved on an increased dosage of thyroxine. I think that the problem relates to metabolism and body heat, as I am warmest at night, which is when I appear to produce the most cortisol. Dr S does not really treat adrenals, but I will be asking him what he thinks about my results and whether the problem is serious enough that I should pursue this by requesting my GP send me to hospital for some proper adrenal tests.

I would recommend that anyone who suspects they are hypothyroid should take a home cortisol test and find out the state of their adrenals before embarking on treatment, you may be in for a rough ride.

Saliva cortisol tests in the UK can be ordered from the following companies: Red Apple, Genova Diagnostics, and Lab 21.

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Written by alienrobotgirl

5 July, 2009 at 6:11 pm

Posted in Thyroid

9 Responses

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  1. I hope you don’t expect much from the GP, even with these saliva test results. Adrenal insufficiency and adrenal fatigue aren’t recognized conditions in convention medicine in the US, and I doubt in the UK, too. The “proper” adrenal tests aren’t designed to measure this sort of condition, but rather to measure gross pathologies like Cushing’s and Addison’s diseases, the the results are unlikely to make your case with a GP who doesn’t recognize less dire inadequacies of the adrenal glands. So I am curious how you fare with the GP.

    When you ordered the cortisol tests, were free T3 available also? The free (unbound) sex hormones can also be measured via saliva tests, too. Often, a complete “package” of all the tests is much more economical in the long run, too, and paints a more complete picture of hormonal status at a given time. Estradiol and progesterone are usually recommended to be tested between cycle day 19-21 (day 3 sometimes, too).

    goingagainstthegrain

    5 July, 2009 at 7:50 pm

  2. Hi GATG,

    Adrenal fatigue isn’t recognised, but I think there is recognition for adrenal insufficiency. I hope only that she will give me the blood tests to determine how bad the insufficiency is and whether it’s serious enough to require medication.

    alienrobotgirl

    5 July, 2009 at 10:50 pm

  3. Hi ARG! I can identify with the way you’ve been treated by the medical community. I live in a small town and haven’t been able to receive medical attention for my symptoms. I’ve been treating myself with the Failsafe diet. I’m wondering if you’ve made any changes to your diet that have been beneficial.
    Warm Regards,
    Danielle

    pearjoy

    6 July, 2009 at 4:08 pm

  4. All I can say is the results speak for themselves…!

    piratehyde

    6 July, 2009 at 3:08 pm

  5. Hi ARG,

    Interesting read again!

    I got my hashimoto tests back negative. I also noticed that the values (both of them) were in given in format: “less than something” and I asked for the real values, but doctor said that for measurement technical reasons, the lab just do not have them. Maybe in US they use some other method of measuring them?

    I did not understand everything in what you wrote. I hope you don’t mind me asking some stupid questions?

    The T3-cortisol connection is interesting. Why do you think that supplementing the thyroid-side only will help? Don’t you need to supplement the adrenals too?

    I recall you have Armour. It already contains T3, rigth? And as you are taking the supplementation at night when conversion should work, you should already see some improvement in cortisol levels. T3 half-time is ~2.5 days, so IF it converts, you should no longer be blurry in the afternoons?

    What I am thinking is that IF the conversion would work, your (and mine) T4 is high enough to provide material for the conversion. Now it seems that it does not work. I cannot see any benefit in putting in more T4.

    If the adrenals are weak, they may not be able for normal output even though there would be enough T3. Is it just because of you intolerance that you are not supplementing with corticosteroids?

    I think I am going to take the ASI-test and if I have similar results than you, I try to get some cortisol and fludrocortisone supplementation (as I have water balance and muscle problems). If that does not help, then also T3. At least in my case I still question the role of the thyroid as the originator of the problem. The T4-T3 conversion alone is enough to explain the similar symptoms and after that is becames impossible to distinguish the originator. And in either way, at this point it seems that the adrenals are the weaker of the two.

    misukisu

    9 July, 2009 at 8:59 am

  6. Out of curiosity, I recently had my DHEA-Sulfate levels examined through the Life Extension Foundation. When I received my results, I was shocked to learn the extent of my DHEA-S deficiency: I have the adrenal glands of a 60 year old man. Anyway, given the current skepticism of salivary testing, which is somewhat warranted, you might want to consider investing in some blood tests that might bolster your case for adrenal fatigue. Although expensive, I think tests from the Life Extension Foundation would be most likely to be taken seriously by physicians.

    Until I visit Dr. Brain McIver–Department of Endocrinology, Mayo Clinic–I’ll have to find some sort of remedy to deal with those crippling moments of apathy, fatigue, and brain fog that are possibly caused by adrenal dysfunction. With some success, I’ve started experimenting with 7-Keto DHEA and Pregnenolone. However, I’m worried about the possibility of creating some sort of hormonal imbalance, or disturbing hormone genesis, so I’m proceeding very cautiously.

    The empirical record for DHEA supplementation is pretty weak, but with pregnenolone, there have been far better results. Due to its modulating effect on the NMDA receptor, I think it has enormous potential for alleviating the negative symptoms associated with mood disorders. But, I’m wondering what the ideal therapeutic dosage would be? I think I might be able to get either my psychiatrist or my new primary care physician to go along with a short-period high dose trial, but I was wondering what you think about the safety of such a venture?

    Are you still using the beta blockers? Depending on the current state of your anxiety, I would suggest that you explore alternative remedies that won’t impair the encoding of memories. I’ve found a combination of bacopa, gotu kola, and rhodiola to be quite effective, but you could stick with the beta Blockers if you’ve been having some success.

    Of the three supplements, I’m most pleased with the bacopa. From anecdotal experience, I can tell you that it has stimulatory (maybe dopaminergic), anxiolytic, memory enhancing, and nootropic (very subtle) properties. But, most of these qualities have been correlated to bacopa supplementation, so its probably not a placebo effect. The only limitation is the half-life, which I suspect is only a few hours. I’m currently looking for studies where larger doses were administered, and I’m looking for a more potent brand. I think the bacopa supplement produced by Advanced Orthomolecular Research is likely to be the winner. From my embarrassingly extensive experience with supplementation, I’ve come to the conclusion that this company creates the most potent, effective, and safe supplements available on the market.

    I apologize for not being more supportive over the last month or so, but the weight of my responsibilities have greatly increased. However, due to the convergence in some of our symptoms, though, I’ll be following your blog closely, and I’ll try to be of some help.

    beroul82

    13 July, 2009 at 12:06 pm

  7. Re DHEA – I would be cautious about supplementing it if you have a cortisol problem as I’ve heard there can be an antagonism between the two. I’m not sure of the dose offhand. Why not stick with pregnenolone, as it converts to both cortisol and DHEA as needed? About 30mg of pregnenolone does the trick. Do you have high cholesterol? Cholesterol coverts to pregnenolone you see. I don’t know enough about these hormones to know if they can be dangerous to withdraw from. I would not take a dose that is higher than a physiological dose. I know withdrawing cortisol support suddenly can send you into adrenal crisis, but I don’t know about pregnenolone and DHEA.

    I’m not taking beta blockers. I think I took a total of 2 tablets in very divided doses. They antagonise thyroid hormone, and make me feel like the living dead. I’m not anxious at all anymore, especially since starting a tiny dose of armour.

    If your adrenal problems are caused by your thyroid, taking thyroid hormone should fix them.

    alienrobotgirl

    14 July, 2009 at 11:18 pm

  8. You don’t always need to supplement the adrenals, usually they recover by themselves given enough thyroid hormone, but in some stubborn cases they don’t as they’ve been damaged by long-term stress and hypometabolism. Thyroid hormone is what drives the conversion of cholesterol into the adrenal hormones.

    I only started taking Armour about six days ago, after I wrote this post. I’m taking my T4 at night and Armour in the morning, as I’m concerned the T3 will keep me awake. I think the half life is 1.5 days. I start to get withdrawal symptoms from it about 30 hours after taking it. I’m only on a tiny 1/4 grain dose at this stage but it has made a big difference to how I feel. So has supplementing B12. I wasn’t feeling blurry so much as so weak I could faint, or go to sleep. I have much more stamina now, and I can ride the day through without needing to collapse.

    I agree on the conversion/T4 issue. I would much rather be on Armour, or even try a trial of pure T3, as my T4 is (was?) towards the upper end of the normal range. However, my “normal” could be 24, or even 30. I suspect my T3 is probably low. It would not surprise me if my sudden descent a couple of months ago was caused by my adrenals flaking out in the face of hypometabolism, and that I developed a conversion problem. I know I *am* converting some T4, as I have seen improvements in my health since I began taking it. But taking the Armour made a significant difference.

    Be careful of cortisol, it is a big commitment and something you have to manage closely. I would not take T3 without getting a T3 test, and I would NOT take it first, without having tried T4. T3 is very powerful and can be a shock to the system. T4 is much gentler. Personally, if I were doing this over again, I would take T4 for a couple of weeks, then add in Armour.

    alienrobotgirl

    14 July, 2009 at 11:30 pm

  9. Well, I can eat about six foods at the moment: Fresh chicken/lamb, goat’s milk/cream/butter, potatoes, sushi rice, oats, and eggs.

    alienrobotgirl

    14 July, 2009 at 11:35 pm


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