Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Just checking in

with 4 comments

I thought I’d better check in so that everyone knows I haven’t died or something!

There really isn’t much news to tell. I was really suffering when I wrote the last post, but since I’m no longer under stress, I’ve slowly started to feel better. I still feel much worse than I did over the summer, but I’m heading in the right direction again.

My GP seems intent on making my life as difficult as possible. After much faff, I finally got my cortisol levels tested. Unfortunately the test has to take place in the morning, and I feel fine in the morning, I get ill in the afternoons. It’s a fasting test and it’s supposed to be taken at 9:00am. I couldn’t get an appointment until 10:00am, and then had to wait for fifty minutes, so I had my blood taken just before 11:00am, by which time I had gone through hypoglycaemia and out the other side, and I was so nervous I could feel my adrenal glands releasing adrenaline. So I got a fasting cortisol level of 337. The “normal” range is 85-800-and-something. The UK Addison’s Disease site says in this PDF:

The diagnosis is highly likely if 9am cortisol is less than 100nmol/L – unless the patient is already on oral or inhaled steroids.

The diagnosis is unlikely if cortisol is greater than 400 nmol/L – but not excluded if the patient is acutely unwell at the time.

For values between 100 and 400 nmol/L the diagnosis can only be excluded by a short Synacthen test (ACTH stimulation test). Patients in the early stages of disease may have 9am cortisol values towards the top of this range.

A fasting cortisol test frequently misses Addison’s disease, and I’m not far gone enough to get picked up by it in any case, as my cortisol is normal in the morning, too low in the afternoon, and goes too high at night. According to the GP and my specialist Dr S (who does not treat adrenal problems diagnosed by the saliva test I’ve had done that shows the problem), my blood levels are “normal”. Yeah, they were at the time, but they weren’t a few hours later, I can tell you now!

This post is just going to be one long gripe about my GP…

I haven’t had any of the other tests done that I need, like B12, folate, and etc, because of the pigheaded GP, who keeps beating me about the head with the “go see an endocrinologist” stick, and refuses to take any responsibility for my care.

I came down with a cold last week, and on top of everything else I was really ill. I made another appointment to try to address the cold, the specialists, the tests, etc. I was going to go in the car because I was so tired I didn’t think I’d be able to manage the 10 minute walk. When I got out of the house I had another dizzy spell and realised there was no way I trusted myself to drive, so I had to walk, and it was a struggle. I was four minutes late for the appointment. I didn’t think this would be a big deal, since every time I’ve ever been for an appointment at that practice I’ve been kept waiting for at least 10 minutes, and an average of about 30 minutes. But when I arrived, the receptionist told me I was late and refused to let me see the doctor. I was given the option of waiting for several hours until someone else missed their appointment. WTF? They couldn’t squeeze me in, even though they were on time with all their appointments for once? I hate these bureaucrats.

So I went home shedding tears of frustration again, for the third? fourth? time with that practice in the last month.

They are really being incredible cowards – because of my cold, I sent in a repeat prescription request for an asthma inhaler. I’ve had asthma since I was about five, and I end up requesting a new inhaler every couple of years when I get hit by a nasty chest cold. I was actually too ill to go and collect the prescription, but I finally went yesterday, only to discover that the repeat prescription request had been refused too, I have to go and request it in person! Good grief, they’re really intent on making my life difficult.

At this point I decided to wallow and do nothing until I got well again, and I spent some time thinking through my options. The NHS only diagnose adrenal problems when they are about to kill you, not when they start giving you symptoms. The other problem is, I’m actually afraid to have a cortisol/ACTH stimulation test, because I’ve seen what it does to other thyroid patients. On a forum where I lurk, I’ve read posts about how people have passed the test but have been practically disabled for days or weeks afterwards as they have used up all of their adrenal reserve. Having passed the test with flying colours, they are then in a position of total confusion – being told there is nothing wrong when there clearly is something wrong, and only putting two and two together when they share their experience with others.

I’m tired of being exhausted and weak and shaky and faint during the afternoons, and then feeling either well, or hyped and overstimulated at night. I was afraid to treat myself with hydrocortisone because the first time I tried it, I used HC cream, and I think I managed to overdose and trigger a mini adrenal crisis a couple of days afterwards. Even though I had a tube of cream, I was too afraid to use it all the time I was really ill when I was on holiday in Spain. I dragged myself along, zombie-like, to a writer’s convention a couple of weeks ago, and I eventually plucked up the courage to try using some again while I was there. After realising I was going to miss most of the convention due to dizziness and faintness, I assumed a frack-it attitude and cautiously used some, with impressive results – within ten or twenty minutes I was no longer faint and had a lot more energy.

So yes, I’ve taken things into my own hands and ordered some hydrocortisone tablets off the internet. You can actually buy tiny doses from chemists without prescription in the form of Corlan tabs – 2.5mg tablets of hydrocortisone, used for treating mouth ulcers. If you want higher doses, you can order items from the states perfectly legally, without a prescription.

I’ve also ordered some pregnenolone and adrenal cortex extract, which I await eagerly. I’m going to take the soft route, rather than just dosing up on hydrocortisone – I’m basically going to take a small amount of pregnenolone in the mornings, and then use small doses of hydrocortisone as and when I need them. I’m not going to sledgehammer up to a full dose of 25mg per day as I don’t think I need it. I’ve already started using the Corlan tabs – only one or two a day, and they do make me feel less shaky, though I certainly need a higher dose. Because I’m okay first thing in the morning and last thing at night, I’m taking the tablets with my lunch. It’s very much a matter of taking what I need when I need it, but I don’t think I will ever go higher than 7.5mgs, I just need something to cover my weak spot in the afternoons. I’m also taking biotin because it helps to convert pregnenolone into the other adrenal hormones. I wonder about this – I’ve tried taking biotin before and noticed a difference. I’m sure it’s made a big difference to how I feel over the last couple of days. Today, though I was still weak, I wasn’t shaky for the first time in ages.

I’ve also continued to increase my Armour thyroid dosage. Dr S is of the opinion that adrenal problems usually resolve once the patient is on enough thyroid medication. I’m of the opinion that I don’t want to wait that long or suffer every time I up my dose (which usually wipes me out for a day). I’m a lot more comfortable with increasing my dosage now I have some hydrocortisone tablets in the house. I feel like I need to be taking a lot more than I’m on already, and it’s difficult not to be impatient. After feeling wiped out, I usually get an energy rush the day after I increase, which then fades away again.

Actually, the Armour thyroid crisis has just hit me, I’m almost out of 1/2 grain tablets. I’ve had to buy a pill splitter online and start splitting the Westhroid 1 grain tablets I have. New formulation Armour tablets just crumble. When stocks are available I think I’ll probably just move over fully to Nature-throid, as RLC Labs, who make Westhroid and Nature-throid are consistent in their formulation, unlike Forest Labs, who keep changing their formula for Armour and causing endless potency fluctuations, a nightmare for thyroid patients.

I’ve also discovered that I can help to avoid that wipe-out effect when I up my dose by upping in teeny tiny increments with crumbled bits of tablet. Perhaps I should just up my dose by 1/8th of a grain every week – surely that’s less traumatic for my body!

I’ve found a private GP in Sheffield who will give me the blood tests I need to have done. This is going to cost me somewhere in the region of £500-600, but I don’t see that I have any choice at the moment. I should by rights be getting these done on the NHS, but I think my only other option would be to change GPs, which would just be another can of worms. I really don’t know if anything will show up, but if something does show up, I will be making my way back to the GP brandishing my test results and wearing a very angry face! (Probably demanding B12 shots!) I’ll be getting a selection of relevant vitamins and minerals tested, plus my sex and adrenal hormones, plus I think I’ll get a T3 and T4 level. I’m expecting my T3 to be below range rather than my T4. I won’t be having those tests done until next week though, as the GP in question has gone on his hols.

That’s about it for now, other than to say thank you for the kind comments and words of sympathy people have made, and I’m really sorry for not replying yet – you know what I’m like – when I’m in my shell, I’m in my shell. But I know that one day soon all of this ADD and Asperger’s syndrome and bipolar syndrome will all just fade away.

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Written by alienrobotgirl

8 October, 2009 at 10:38 pm

Posted in Thyroid

4 Responses

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  1. Glad to hear you’re doing a little better. Have you had your 25(OH)D blood levels tested? That might be something your GP would do. The evidence seems to be rapidly mounting that suboptimal vitamin D levels leave you more prone viral and bacterial infections. From what I’ve been reading the 25(OH)D needs to be up near 50 ng/ml or higher for optimal health.

    I remember a while back you looked good on vacation after getting some good sun and reported that you felt better.

    Just a thought 🙂

    oz4caster

    9 October, 2009 at 12:55 am

  2. I was going to suggest you change GP. My parents have just done that after years of poor relations with their old GP. The new one is great. It took a bit of pressure with the local patients advocacy service at the PCT but it was worth it.

    Interesting you mention Adissons. It is one of the potential diagnoses that friendly medics (friends of ours) have come up with for my Dad, but nothing has been diagnosed yet. I’m not sure

    chrishighcock

    9 October, 2009 at 6:27 am

  3. Thanks Bryan, yes, I’ve requested that my vit D levels be tested, but the stupid GP is refusing to do it. They won’t touch me with a bargepole because of my suppressed TSH as they don’t want to libel themselves – that includes absolving themselves of all responsibility for my general health. I might go and make one final request next week – along the lines of “if you don’t run these tests and I get them done and it shows up a problem, I will be filing a complaint against this practice.”

    I suspect I have something going on with B12/folate and vit D/calcium/magnesium, though these vitamins are involved in the utilisation of thyroid hormones in the body, so I could be seeing weird effects from them just because I am hypo.

    alienrobotgirl

    10 October, 2009 at 12:24 am

  4. Thanks Chris. I didn’t know there was such thing as a patient’s advocacy service! I think I’ll go and investigate!

    If they suspect Addisons, they should be doing something about it quick sharp as it can kill. Does he have any unusual pigmentation?

    alienrobotgirl

    10 October, 2009 at 12:31 am


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