Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

My adrenal glands have gone on holiday

with 4 comments

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.

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Written by alienrobotgirl

14 September, 2009 at 12:33 pm

Posted in Thyroid

4 Responses

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  1. ARG

    I really hope this gets sorted soon. I can feel your frustration and worry throughout this post. I’m thinking of you.

    Chris

    chrishighcock

    14 September, 2009 at 9:56 pm

  2. Oh ARG, that’s just horrible. I had so hoped that you were doing well. Please keep us apprised, even if it’s just via little twitter-length updates.

    sideshowbelle

    15 September, 2009 at 1:36 am

  3. hello Alien Robot Girl

    Interesting blog! I like the fact that you research things so heavily and work out your own answers. You certainly won’t get the right ones from the medical profession.

    I am on my own thyroid / adrenal journey and am now pretty much optimal on prednisolone, Armour and additional T3. It took me a long time to work it all out. T4 only meds caused my adrenals to crash big time. Ultimately they cause more stress to the adrenals because they leave you hypothyroid, particularly if you have a T4 – T3 conversion problem and / or low cortisol. Armour will get you sorted, but you have to go slow.

    A serum cortisol test will probably be misleading. I had one at the depths of my adrenal crash, and it was ‘normal’. I had all the symptoms – thin, stress intolerant, insomnia, hypoglycemic, frequent crashes, malabsoption – you name it. Knowing what I needed, but not able to get a doctor to prescribe hydrocortisone for me because of my ‘normal’ results, I took adrenal glandulars by Nutri West and these enabled me to get out of bed. I then moved onto Isocort (google it) and then found a brilliant doctor who did the whole HC / Armour / female sex hormones testing, and found that I was a walking car crash (I knew that already but the stupid GP had of course missed it).

    Good that you’re seeing Dr S, but I don’t think he knows too much about adrenals. Dr Peatfield is much more versed in this. Google up the glandulars / Isocort and do a 24 hour adrenal profile (saliva test) from Genova Diagnostics http://www.gdx.uk.net/

    this will give you an accurate picture of what your adrenals are up to, and whether you need to treat them. You are probably going to have to do this yourself, because doctors don’t recognise adrenal fatigue, only Addison’s and Cushings.

    Good luck with all of this. I shall be following to see how you get on!

    imgeha

    15 September, 2009 at 11:03 am

  4. Thanks peeps 🙂

    I finally got my blood cortisol test drawn today – the GP had messed up and lost Dr S’s letter and he had to send it again. Infuriatingly, I was feeling pretty well this morning. I could have waited for a bad day, but I honestly don’t know at 8:30 am when I make the appointment which direction I’ll have gone in by 9:30 am!

    Hi Imgeha,

    Dr S is being accommodating with the adrenal thing, and he’s willing to treat me if it comes back low, but I’m aware it will probably come back normal. The Addison’s disease website says they often come back normal even in Addison’s, and I usually feel well in the morning anyway! I’m pretty sure I won’t get better until I’m on steroids, and I won’t get better till I’m on Armour, and I can’t handle Armour until I’m on steroids… I’m going to keep forcing the issue in the hopes of getting an official adrenal insufficiency diagnosis, I’m not over-eager to treat myself with steroids. I seem to be able to handle some T4 if I take it at night (it made me ill when I took it in the mornings), but I think I’ve reached my limit.

    I actually had a saliva cortisol test done by Lab 21 about 3 months ago, which I’ve been brandishing at the GP. They want me to go and see an endoprat in Sheffield, but I don’t know who’s good and who’s bad apart from Professor “Somatoform Disorder”, whom I’m avoiding like the plague. I won’t know what to do next until I get my results back!

    alienrobotgirl

    15 September, 2009 at 3:07 pm


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