Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

My adrenal glands have gone on holiday

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So this morning I got very stressed, enough to revive me from my stupor, so I thought I’d use this brief period of adrenal sufficiency to write a short update on my progress.

Things aren’t going well for me at the moment. Over the last few months I’ve increased my dose of thyroxine until I was up to 100mcg plus half a grain of armour. I had been doing okay at 75mcg. Not better by any means, and still food intolerant, but at least stable enough to take off all of the symptoms that came crashing down on me in the Spring. When I went up to 100mcg I started to feel a bit weird. On and off I would feel a bit faint and notice my heart beat going a bit fast – not too fast, but pounding uncomfortably. For a moment I thought I might be thyrotoxic.  But I was still as cold as ever, still with low endurance, etc, etc, and clearly not yet well. I had to go and get a heart beat monitor to convince myself that my pulse was still normal. Instead of being on my regular stable low, I started having good days and bad days. I’d have brain fog for no apparent reason, or feel really tired at night instead of feeling clear-headed.

A couple of weeks into this, my follow up appointment with Dr S was due. He’d suggested I get a repeat thryoid panel done before I saw him again, and I duly did that, but the locum I saw only measured my TSH, which turned out to be 0.03, theoretically, according to the books, very thyrotoxic. However, I had no symptoms of thyrotoxicity.  There are a number of complications that can cause this to happen. Sometimes if your body isn’t utilising thyroid hormone, the thyroid hormone can build up in your blood and suppress your TSH, even though you are still hypothyroid.

So I spoke to the nice lady from Thyroid Patient Advocacy UK, and she suggested a number of blood tests that my GP should run to figure out the reason for the false TSH – these include B12, D3, magnesium, zinc, copper, and folate. (There’s no surprise there with that list of vitamins, huh? Sound familiar to anyone interested in methylation?) I had previously spoken to Dr S about my adrenals, and he said to get the GP to run a fasting blood cortisol test to see if my cortisol levels were too low. Inappropriate cortisol levels can also interfere with your TSH level and prevent you from getting better on thyroid hormone.

Despite still feeling hypothyroid, my heartbeat was bothering me and I had the shakes sometimes. I suspect now that I’d hit the wall with my cortisol levels, but at the time I was quite confused. The TPA lady said sometimes people can get unpleasant symptoms like these when they are too high on T4 and too low on T3, and to ask Dr S if I could swap onto Armour thyroid instead of thyroxine combined with Armour, as Armour contains T3.

I decided to skip a couple of doses of thyroxine and then try and raise my Armour dose by myself, which is a reasonably sensible plan for swapping over. Worst mistake of my life. I felt terrible the next day, really faint and weak and almost blacking out when I stood up. These are low cortisol symptoms. Skipping one dose of thyroxine isn’t supposed to do this, but apparently I’m not a textbook. Altering my thyroid dose – in any direction – apparently batters the heck out of my adrenal glands. I spent the bank holiday weekend descending into hell. On the Monday I was barely able to move and couldn’t even cook myself dinner.

I went to see my GP on Tuesday to ask for the tests the TPA lady had recommended and to get the fasting cortisol test Dr S asked for. The locum I saw refused to give me any tests at all. His reasoning was that he didn’t want to take responsibility for testing me for anything because he would have to interpret the tests and he didn’t want to do that (and you spent seven years in medical school to do what, exactly, diagnose colds???!!). He told me I needed a letter from Dr S before they would run any tests on me at all, and that I had to go and see a practice partner to authorise the tests when I returned. Since I now felt atrocious and had no idea which way to jump with regards my medication, I came away in floods of tears.

I rearranged my appointment with Dr S for the same day, as to minimise my anxiety during the waiting period, and as I was supposed to be going on holiday on the Saturday and wanted to be back in a reasonable state by then. So I saw Dr S, who was very sympathetic, and cross with the GP for refusing to test me, and he said he would write to request the damned serum cortisol test I needed. Still believing that perhaps thyroxine didn’t suit me, I asked Dr S to swap me onto Armour, which I was already in the process of doing, and that was fine by him, he has lots of patients on Armour.

So on Wednesday I was up to a grain of Armour and 25mcg of thyroxine at night. This is not a huge adjustment in medication at all, it’s virtually the equivalent of what I had been on – marginally less – but just with more T3 and less T4. But the weakness and lightheadedness became worse, and I became so dizzy I could barely stand. I was dizzy for about eight hours. By this time my partner had flown out of the country on a business trip to Spain, and I found myself phoning my Dad in tears as I was afraid to be alone in case I fainted. I recovered enough that around tea time, I could take the dog out for a walk.

A feature of adrenal insufficiency is an inability to tolerate Armour or other T3 containing preparations. I was pretty sure by then that the dizziness and weakness and confusion were caused by insufficient cortisol levels, so I spent the next few days working my way back to almost my original dose. I’m back on 75mcg thyroxine and half a grain of Armour again now, but I still feel like hell. I seem to need to take my night dose of thyroxine to have any chance of producing enough adrenal hormones the next day, but if I take too much Armour in the morning, I get dizzy very quickly.

I flew to Spain alone to join my partner on holiday on Saturday. I found this very stressful and almost baulked at the last minute, because I was still having dizzy fits and wasn’t over-eager to end up in a Spanish hospital. I survived the flight okay and thought perhaps I was getting better, but a few hours after I arrived I collapsed. I spent three days laid down in the holiday apartment, unable to get to my feet without almost blacking out, feeling nauseated and confused. This is practically an Addisonian reaction to stress. Eventually I started to revive again in the late afternoon and evenings as my adrenals started working again. On the Wednesday and Thursday of my holiday I actually felt well enough to do things for part of the day. I actually felt like I was waking up and I’d been in a dream for most of the holiday, as if parts of my brain had been switched off. I had a bit of a swim. Lucky me, on Thursday afternoon, feeling full of overconfidence and firmly believing I was on the mend, I decided to swim out to a buoy in the bay, and got stung by a jellyfish. My adrenals took a big hit from that, I can tell you. I thought I was going to faint in the elevator back up to the apartment. My partner had to take me to the pharmacy.

Friday we flew home. Another stressful experience, as the pre-landing period was decidedly rough. We managed to get home and pick up the dog from the boarding house, then I collapsed again, very faint, very dizzy, very nauseous and confused. I spent most of Saturday and Sunday in bed in a confused stupor, counting the hours until the doctor’s surgery opened so I could go and get this bloody cortisol test before my adrenals kill me.

So off I went today, armed with a list of my symptoms and a list of justifications for testing, and the doctor I see refuses to give me any tests, says they can’t find a letter on record from Dr S requesting a fasting blood cortisol (I have since confirmed with him that he DID send it), won’t take responsiblity because they will have to interpret the tests, recommends (yet again) that I go and see That Bastard of an endocrinologist at Sheffield Hallam Hospital with the reputation for sending women away in tears and telling them it’s all in their heads… How long are they expecting me to wait for a referral, by the way?

I sat there sobbing and trying to communicate that I am on the verge of collapse, that every time I experience even mild stress, I’m incapacitated for hours and sometimes days, but it doesn’t go in. I show the doctor the test I had done privately that indicated my cortisol levels are barely above the Addisonian threshold during the middle of the day. My adrenal glands HURT. I want to puke all day and all night. But no. We Must Have The Letter Before We Do The Test.

I’m so upset. There’s a writer’s conference taking place at the end of this week that I’ve been looking forward to for a year, but I know what it will do to me if I go. All I need is some bloody prednisone, but it looks like the great lumbering bureaucracy that is the NHS isn’t going to lumber fast enough and I’m going to have to suffer for days and weeks to get the necessary tests to diagnose me with a disease, that at the end stage, kills within a couple of hours.


Written by alienrobotgirl

14 September, 2009 at 12:33 pm

Posted in Thyroid

ADHD and hypothyroidism

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I urge people who have children on the failsafe diet because they are ADHD to read this story, written by a thyroid cancer survivor, who has two hypothyroid children. It will sound familiar to you. Note that her children’s blood tests were inside the normal range, but that thyroid medication still fixed the problem.

Written by alienrobotgirl

30 August, 2009 at 7:57 am

Posted in Thyroid

An interesting TSH

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There are several different blood tests that doctors use to determine whether someone is hypothyroid. For example, Free T3, which tests the levels of active hormone in the blood, Free T4, which tests the levels of inactive hormone in the blood (which is converted to T3 in some peripheral tissues and the liver), and Thyroid Stimulating Hormone (TSH), which tests the level of a hormone produced by the pituitary gland with the purpose of stimulating the thyroid to produce more T4 and T3.

There is great controversy over what a “normal” TSH value is, and specialist thyroid doctors protest that there is a great over-reliance in the usage of TSH in determining whether a patient has a thyroid problem, and that many patients are going undiagnosed unnecessarily because their signs and symptoms are being ignored. There is an excellent article on TPA UK regarding problems with the current TSH range. Everyone has a different idea of what is “normal”.

The current “normal” level used by my GP’s lab here in the UK, is a TSH of 0.35 – 4.5.

I’m going back to see Dr Skinner next week. I’m currently taking 100 mcg of thyroxine (T4) (an average appropriate level of thyroxine is around 100-150mcg depending on who you talk to).  I’m also taking half a grain of Armour Thyroid (and if you haven’t heard the horrific news about what the FDA have planned for natural thyroid supplements, I suggest you visit this page and join the campaign to save it, before the FDA starts killing patients who need it).

I still have a lot of hypothyroid symptoms. I’ve definitely improved, I’m much less food intolerant – I’ve been on a bit of a chocolate binge for the last few weeks, without too many consequences apart from a slight worsening of my eczema and some heart block / palpitations. I’m back on failsafe again for now as I’ve had a few days of feeling rough. I’m not completely well yet. My energy levels have improved but I’m still not up to doing exercise. My heart goes mad whenever I run up the stairs. I often have blood pressure readings of ninety something over fifty something. My pulse has improved, it’s usually in the seventies. My cholesterol is still too high and hasn’t changed. My body temperature goes up and down like a yo-yo, which does indicate an adrenal problem – it will be within range for a few days, and then drop back down for a week, particularly if I’m under stress.

It takes a while for your TSH to settle down when you have started thyroid medication. Everyone has a different idea of how long it takes to settle – some doctors say a month, others say three. What I’ve noticed is that I tend to feel good for a couple of weeks after raising my dose, but then I start to feel rough again, as if my body is in homeostasis and responding by lowering my TSH in order to get back to the hormone level it’s used to, instead of the one it needs. Because my appointment with Dr S is next week, I needed to get my blood tests before I saw him, but I’ve actually only been on 100mcg of thyroxine for two weeks. I was feeling rough again when I went to see the GP a couple of days ago.

The GP I saw was the locum who sent me away during the swine flu crisis, telling me I was “just anxious”, without doing any blood tests on me.

We had an interesting conversation. “Does it run in your family?” she asked.

I gave her a rather simplified answer. “Yes, I’m sure my mum is severely hypothyroid, she has a lot of serious symptoms and her cholesterol is through the roof. I’m trying to get her to go to the doctor about it.”

“If her cholesterol is high, why haven’t they tested her thyroid?”

“I know, it’s ridiculous.” I agreed.

“Do you have children? It often comes on after pregnancy.” (The number of thyroid patients who are misdiagnosed with Postnatal Depression is criminal).

“No, but I’m sure the Pill made me worse.”

“You’re probably right.”

By this time, I had realised that I was actually talking to a GP who knew something about thyroid disorders, and I hadn’t had that impression from the two others I’ve seen. I asked for a repeat prescription of 100mcg tablets, as I’m due to run out before I see the good doc S. Unfortunately as they were given me by private prescription, they weren’t in her list of repeats, and she started rummaging around on the computer going through my medical records. “Why are you seeing this private doctor? Why aren’t you seeing an endocrinologist?”

“Because he’s a specialist and he has really good reviews from everyone who’s seen him. The GP I saw wanted to keep me on 25mcg of thyroxine for eight weeks and she was scared of sending me hyper.”

“You can’t rush thyroid treatment.”

“I was having anxiety attacks. They went away as soon as I went up to 50mcg.” At this point I requested she check my medical records on my request to make sure I hadn’t been diagnosed with Generalised Anxiety Disorder, which was what one of the other GPs wanted to diagnose me with (incorrectly). Fortunately there are no mental conditions listed on my record!

Then she clicked on a letter Dr Skinner had sent. “What’s this all about?”

“He’s a specialist who treats patients with prior diagnoses of fibromyalgia who are hypothyroid. I was given a diagnosis of fibromyalgia twenty years ago, and I’m sure it was a misdiagnosis. ”

“What’s this about treating patients until their symptoms go away instead of by their blood tests? No, I can’t be having this, you can’t do that kind of thing these days, it leaves you open to libel.”

Yes, that was pretty much exactly what she said. I wonder if she would notice what was wrong with that sentence if it was repeated back to her? She’s a doctor, it’s her job to treat patients, not appease lawyers.

“Well I believe that you should treat a patient until they’re better, not just go by the lab results.”

“Well you’re not a doctor.”

At this I just held my hands up and shrugged. What I should have said is, “Yes, but I’m an expert patient, and I know better than you do whether I feel well or not.”

“If your lab results are normal, you aren’t hypothyroid, you have something else. I sat on a GMC disciplinary hearing for a doctor who was treating fibromyalgia patients with thyroid hormones. You can’t do it. It’s very dangerous.”

At this point my heart sank. “I’m going to have problems here aren’t I?”

She almost didn’t give me my repeat prescription, but got herself in a bit of a tizz because it would be dangerous for me to run out of thyroid medication. She only wanted to give me seven days worth of tablets until I saw Doctor Skinner. Eventually she found the lab results indicating clear evidence of hypothyroidism and decided she could give me a repeat prescription for a couple of months worth of tablets, and 100mcg was a reasonable dose as most people end up on that amount.

She did warn me that I was probably getting my tests done a bit soon as I had not long upped my dose. She wouldn’t give me a test for thyroglobulin antibodies though. “Because the treatment is exactly the same,” whether it’s autoimmune or not. Hmm, I don’t think so. There are things I can do to calm down my immune system if it’s autoimmune. I think I’ll have to get the test done privately.

So today I went back to the doctors to collect my test results. I discovered that she had only given me a TSH test, no T4 test, no T3 test! What’s the point of that? It tells you nothing about anything except what the pituitary gland is doing, especially so close to upping my medication. Guess what my TSH was?

Remember – the normal range is 0.35 – 4.5 according to the lab they use.

My TSH: 0.03.

I guess with a TSH that low, my thyroid gland isn’t doing much right now. I expect it’s just a “settling in” anomaly, or even a mistake. It might be why I’m going through this rough hypo symptom patch, it could indicate pituitary involvement, or perhaps an adrenal problem. Who knows?

I’m going to have to go back to the GP again on Monday to get the blood tests I wasn’t given, as I think the only relevant one will be one for T3. I’ll try and get a cortisol test out of them too.

So, beware if you’ve found yourself in this situation. Your TSH may not be telling you the truth. If your doctor or endocrinologist is not paying attention to your symptoms too, you may find yourself insufficiently treated.

Written by alienrobotgirl

28 August, 2009 at 7:25 pm

Posted in Thyroid

Coeliac disease and hypothyroidism

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Just a quick post, something I found on Mary Shomon’s site:

According to research reported on in the medical journal Digestive Diseases and Sciences, a significant number of patients with autoimmune thyroid disease also have celiac disease. Celiac disease is a disorder that causes the intestines to react abnormally to gluten, a protein found in wheat, rye, barley, oats, spelt, kamut, and other related grains.

“…researchers found that…organ-specific autoantibodies (i.e., thyroid antibodies) — will disappear after 3 to 6 months of a gluten-free diet.”

Celiac disease, which is sometimes referred to as celiac sprue, sprue, or gluten intolerance, makes it difficult for the body to properly absorb nutrients from foods. Symptoms include various intestinal difficulties, recurring abdominal bloating and pain, nausea, anemia, gas, tingling numbness in the legs, sores inside the mouth, painful skin rash on elbows, knees, and buttocks, cramping, hives, joint/muscle pains and aches, diarrhea, and constipation, among others. Untreated, celiac disease raises risks of contracting certain stomach cancers by more than double.

The researchers studied 172 patients with autoimmune thyroid disease, and two control groups, and found that the 3.4% of patients with autoimmune thyroiditis had celiac disease, and the prevalence was only 0.6% and 0.25% among the control groups. The study also found that undiagnosed celiac disease may actually be part of the process that triggers an underlying autoimmune disease. In their findings they wrote: “We believe that undiagnosed celiac disease can cause other disorders by switching on some as yet unknown immunological mechanism. Untreated celiac patients produce organ-specific autoantibodies.”

Of perhaps greatest importance to thyroid patients, the researchers found that the various antibodies that indicate celiac disease – organ-specific autoantibodies (i.e., thyroid antibodies) — will disappear after 3 to 6 months of a gluten-free diet.

The researchers suggest that patients with autoimmune thyroiditis “may benefit from a screening for celiac disease so as to eliminate symptoms and limit the risk of developing other autoimmune disorders.”

(Digestive Diseases and Sciences, February 2000;45:403-406.)

Mary Shomon, on thyroid conditions

Written by alienrobotgirl

31 July, 2009 at 11:18 pm

Posted in Thyroid

Positive changes on thyroid medication

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Sorry guys, I’m badly neglecting this blog, the community, and emails sent to me. I just have other things I’m doing.

I thought I’d run through some of the positive and negative changes I’ve seen since I started treatment for hypothyroidism way back on the 20th of May this year.

First off, my immune system is not great. My seasonal grass pollen allergy has just been going on and on for weeks and weeks now. Last year I didn’t have any allergies at all (yeah, I know it was wet, but still…). I don’t know what’s going on there, whether there’s some sort of immune remodulation going on or what. My partner’s workplace has come down with swine flu, so I’m crapping myself that he’s going to catch it and bring it home to me. I’m really still too ill to get swine flu at the moment.

I don’t understand why I started to get the anxiety attacks after I started the 25mcg dose of thyroxine. The tablets did contain acacia extract, and I was eating a lot of oats, and probably my adrenals were knackered too. One other reason may be to do with B12, which I have started supplementing regularly. Before now, I would not have tolerated a regular supplement of B12, it would have made me very irritable and snappy and given me mini-seizures/jumpiness at night. I seem to be tolerating it quite well now, and I think I need it, as since I’ve been taking it I’ve increased in confidence and sense of well-being, and I’m less prone to back pain. I wonder whether the “anxiety” attacks were caused by dysautonomia – when the autonomic nervous system goes haywire. Sometimes that can be caused by a B12 deficiency, though undoubtedly also by a thyroid problem!

Once I got my dose upped to 50mcg of thyroxine, my breathing and faint spells got a lot better. My temperature was very erratic due to the anxiety/adrenal problem, but since I’ve been on the higher dose, I’ve only had one anxiety attack, and that was certainly psychological because I got anxious about having to go and negotiate with my somewhat negligent GP again, who rightly should have tested my cortisol before giving me thyroxine. (My current strategy is avoidance, I’m doing okay, so I’m not rocking the boat about getting cortisol blood tests done). I’m also experiencing less adrenaline bursts at night than I was, and much more endurance during the day. My temperature has stabilised anyway, but it’s still very low, usually 36.2. I NEVER want to experience another anxiety attack in my life. They are horrendous things to experience. I felt like I was in hell.

Since I started taking Armour thyroid (about six days ago now), I have developed more endurance and energy, and some interesting brain changes have taken place. I’ve mentioned before that I have ADD, the variety known as Sluggish Cognitive Tempo. Well, I’ve noticed that my thought processes have increased in speed, especially at night. My “good patch”, which is between about 10pm and 2am in the morning, has been stretching on forever. I keep looking at the clock and I’m surprised by how much I’ve got done or how much thinking I’ve done in a short time.

In many respects, I feel like I would have felt six months ago, before I went downhill: still very food intolerant, still having the occasional rough day, but emotionally and physically stable. In other respects, I feel slightly better, for example, these brain changes, and having some random bursts of energy now and then – I had the urge to jump up and down for no reason the other day. I can’t remember having that kind of spare energy before. Since taking Armour, the tinnitus I was experiencing at night and in the morning has 90% gone. I had started to get halitosis. That went very quickly.

My heart seems stronger. I’m not sure how to explain this properly, it just feels less irritable and weak. I still get ectopic beats now and then, and palpitations as soon as I’m under any emotional stress, but they aren’t nearly as bad. I’ve been able to take small amounts of magnesium now and then without experiencing the “instant pseudo-heart attack” effect – the squeezing in my left arm, sense of doom, and funny heart beat I was having. I don’t seem to need calcium as much to keep my heart beat regular, in fact, I think I may need some magnesium to stop my heart from feeling too “strong” in the beat now and then (calcium controls heart contraction, magnesium the release, and they antagonise each other). When I started taking the Armour, it made my heart feel “strong” in the beat, which makes sense because T3 has some control over calcium channel influx or some such thing – I took some magnesium and felt better for it, it didn’t come back.

I’ve been doing unusual things for someone as aspie as me, for example, I decided that I actually like wearing jewellery – I’ve never worn jewellery before in my life. I used to find things like bracelets, watches and earrings unbearable to wear because of hypersensation. Polyester and wool don’t drive me nearly as crazy anymore either.

I’m becoming more organised and business-like. I’m taking more pride in my appearance. I feel more confident and more able to cope with people. Usually, I’m too scared to make phone calls and I’m intimidated by many social situations. I’ve been making quite a few phone calls. I’ve done things I would never normally do – for example, I went into a pawn shop and bought a bracelet! Places like pawn shops are foreign territory to me. So are designer clothes shops. I even tried to extend the olive branch to an old friend I fell out with. Though said olive branch appears to have been snapped in two and handed back for reasons of her own, to be honest, I’m not that bothered. Before, this kind of thing would have devastated me – did devastate me at the time. But whatever, there are plenty more soul mates in the sea, and I have plans to go out and make lots of lovely friends when I’m back on my feet. Before, I would have been too petrified and stressed by the idea to consider that as an option.

My weight is stable and not increasing on 1,800 kcals per day. I actually only weigh 8 stone 11 lbs at the moment, pretty good going for me. Normally I gain about 4lbs when I come off a diet, but I haven’t gained anything back at all. I think I’ve lost a significant amount of mucin build up from my arms and legs in particular. I always had these annoying chubby limbs, no matter how thin I was. It turns out the problem was mucin, not fat, and I’ve lost a significant amount of bulk from my arms in particular. I actually have slim arms, hands and wrists! My skin became loose on my upper arms, which was a bit horrible because I could see how skinny my muscles actually were under all of that water weight. The skin has started to snap back already, thank heavens. My skin is smoother and my cellulite is very much reduced (I now firmly believe cellulite is caused by mucin build up, not fat!). Did I mention that I had started to take on a somewhat creamy yellow tint to my skin? This is due to poor conversion of beta carotene to vitamin A. I’m still kinda yellow, but rather pinker than I was.

Here’s something amazing: my voice is changing. It’s always been rather low, and I’ve never been able to sing because it breaks easily and becomes hoarse. Though I have a perfect ear, I can’t keep a tune and my larynx muscles seem to have a will of their own. As a result, singing is something I only do in the privacy of my own car, as I’m torture to my own ears. Well a few days ago I sang my little heart out on the way back from a wedding, and I was amazed by how smooth, strong and sweet my singing voice sounded. Of course, I still can’t keep a tune, but I can keep it a lot better than I could. This gives me encouragement that if my larynx muscles are improving of their own accord, then my heart muscle is too.

I started to develop a bunion last year, despite always wearing flat shoes, and this was certainly due to mechanical stress – walking a cocker spaniel that pulls on the lead does not help one’s feet. I’m sure this also relates to my thyroid though. Just today I’ve had another flare-up of that, which is the first time since I started thyroid medication.

I’m still very food intolerant. I’ve tried a few things cautiously – mild cheddar cheese, which still gives me nightmares, though hasn’t really affected my skin or made me itch like it used to. Gluten still bothers me, demotivating me and giving me back pain, I currently have a lovely gluten withdrawal migraine. One shot of whisky combined with an anxiety attack last week made me vomit in the night. I ate some melon at the wedding I mentioned, and that gave me a happy-high (hence the singing) and made me feel a bit rough the next day. I am optimistic that all of this will change when my temperature gets back up to normal. The good Dr S assured me it would. “My patients are always convinced that their food intolerances won’t get better, but they always do,” he said. Roll on my dose increase on Thursday.

Written by alienrobotgirl

15 July, 2009 at 1:26 am

Posted in Thyroid

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:


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.

Written by alienrobotgirl

5 July, 2009 at 6:11 pm

Posted in Thyroid

Anxiety problems

with 13 comments

Apologies for disappearing. I went into “can’t cope” mode, as you know I am prone to. If I owe you an email I’ll pull myself together and write back soon.

I’ve been having anxiety attacks. They can come on at any time, but particularly happen at night, and they can go on for hours and hours through the night. I’ve been struggling to get any sleep, feeling like hell, struggling to do even basic housework or walk the dog, feeling very hypothyroid.

I’ve been moderately anxious since I really started to crash and become really hypothyroid a few weeks ago, but the anxiety attacks have come on quite strongly in the last couple of weeks. I don’t know why. I’ve been worried it might be my adrenals and getting into a silly feedback loop about being anxious about being anxious, but I don’t really think it could be adrenal, there’s too much psychology involved, but I’m going to do a saliva cortisol test just to be sure.

I think it’s partly just a reaction to the thyroxine, since my body is so out of kilter that I’m having some “hyper” symptoms even though I’m definitely still hypo. Apparently there are differences in the quantities of adrenergic receptors in hypothyroid people – too many alpha ones compared to beta ones or some such thing, and that’s something that will correct over time.

It may also be connected to reintroducing a lot of carbohydrate and sugar into my diet in an effort to not diet anymore. Apparently withdrawing from a ketogenic diet can cause anxiety as the body gets used to having all those extra calming neurotransmitters, so I’m trying to cut down a bit on the sugar and the oats (even though I love homemade flapjacks almost as much as life itself).

I think it’s also because I’m a hypochondriac – and by this I mean that though I really am ill, I do obsess about being ill and I can’t stand the sensation of feeling ill and I refuse to put up with it, and so it all drives me a bit crazy. This probably hinges into my autistic traits – being extremely hypersensitive to one’s surroundings and bodily sensations makes it difficult to switch off and the whole thing becomes overwhelming.

I had to go back to the GP, I saw a different female doctor, who told me “don’t worry about this thyroid problem, you’ve had Generalised Anxiety Disorder for the last five years, that’s why you have attention deficit disorder.”

Of course I’ve only been anxious for about six weeks and having anxiety attacks for two weeks, so this is BS. You have to be anxious for at least six months solid to get a diagnosis of GAD, and I’ve been very, very calm over the last few months. And besides, adrenaline helps to focus my attention – that’s why they give ADD kids Ritalin, isn’t it? That’s why I’ve managed to finish writing my novel, ffs.

Anyway, I came away with a prescription for beta blockers. I’m breaking open the capsules and taking small amounts as required, just to try to help me to sleep, because the anxiety tends to come on at night when my imagination gets overactive. The beta blockers give me fibromyalgia – musculoskeletal pain, back ache, and restless legs syndrome. Apparently they do antagonise thyroid hormone on some level. I suspect this is how salicylates operate too.

I really thought getting better was going to be plain sailing, but apparently not. The psychology of all of this waiting to get my dose increased is driving me nuts. I’ve actually resorted to seeing a counsellor and an acupuncturist in desperation in an attempt to control these anxiety attacks.

Acupuncture does have measurable effects on the sympathetic and parasympathetic nervous system. It can alter blood pressure, breathing and pulse in measurable ways. There are papers on it, so I was willing to give it a go, just for giggles. I saw the acupuncturist for the first time today – I wasn’t sure what I was expecting, I didn’t think it would work really. She started by putting two needles in each of my ankles, and when she put the last one in, I had a strange dizzy moment. I dismissed it as psychological. Then she put needles in my wrists and one in my forehead between my eyebrows. Once they were in I had a few minutes where I started to develop anxiety, I could feel my heart starting to go and I started to struggle with my breathing. I had been expecting to feel relaxed! Anyway, I fought with it and eventually I started to go calm. After she took the needles out I was incredibly calm, like I’d had a dose of valium or something. I’ve remained calm all day. I’m still pretty calm now, so hopefully I won’t have another awful night’s sleep. Even if what I experienced was psychological – which it didn’t feel like – it works a lot better than beta blockers! I can’t wait to go back for another session.

I saw a counsellor earlier in the week. This going to see practitioners is very odd, I would never normally have the courage to do it, but something seems to have changed there. Anything I can do to get my head round the mental aspects of the anxiety, I’m willing to try. The counselling session left me feeling pretty overwrought and was possibly counterproductive, but hopefully that will change over time. Although I’m normally a very balanced person, I do have a lot of “issues” in my past – being bullied at school for being a geek, a chronic fear of doctors brought on by being accused of making up my fibromyalgia when I was thirteen years old, a lot of experience of rejection and fear of being rejected. Talking about it is like dredging muck up off a riverbed, possibly muddying the waters, possibly ineffective. I don’t know, we’ll see how things go.

I went to see Dr S this Wednesday. I’ll write about the visit soon. He’s upped my dosage of thyroxine to 50mcg, which I’ve started and I already feel like I have more energy for it, despite the bad sleep. I was able to walk the dog quite a long way today without feeling like I needed to collapse, despite a bad night’s sleep. When I got back home I realised I was more heat tolerant than usual. I’m heat intolerant as well as cold intolerant. Normally when I come back from a walk I have to strip off my clothes because I feel so hot, even though I’m not actually overheating. Today I didn’t get that unbearable sensation. It’s funny how some effects of the thyroxine come on almost immediately, and others only change slowly as the weeks go by.

Written by alienrobotgirl

26 June, 2009 at 11:38 pm

Posted in Thyroid