I don't know if I should be posting this rant under thyroid UK, thoughI have done before.
All I know is that following advice from Thyroid UK, and after sourcing T3 and metavive, iron, vitamins, and supplements - I am so much better, and no longer have the symptoms of CFS, although I am extremely depressed, and abandoned.
The problem is that after a haematology (at the hospital )test where my T3 & T4 were only a third in range, (previously right on the border) and yet my already low and getting lower before I started self treating tsh became suppressed on the metavive - I was hauled before an Endocrinologist who accused me of "abusing sports steroids". And that I was giving myself thyrotoxicosis, and that I was stopping NDT for a long time before the blood draw to disguise this, and that T3 & T4 leave the blood stream within an hour of taking T3, and that TSH stays for weeks. When I pointed out that my TSH was getting lower & lower b4 I started, he accused me of taking it for longer than I was. He just went on about the somewhere in range numbers, and yet ignored all the out of range numbers....
He informed me that thyroid uk get everything wrong! also that he was on the panel that wrote the book/bible for TSH, T3 & T4 for everyone to follow. He then asked me what I wanted. I replied that I wanted testing of Hypothalamus and pituitary function, as several knowledgable people, including a GP aquaintance mentioned that I look as though I have problems there. He also effectively called me a liar when I pointed out that I had had thyrotoxicosis when young, (I will need to check to see if they have destroyed my hospital records there) that may explain why they are not releasing my SAR!)
The problem is that he told me that I would be having two tests in 2 weeks time. One of which, when I looked at the online info had this to say about the steroid fast for 6 weeks b4 test!
"Estrogen containing medications, including the contraceptive pill and hormone replacement therapy, should be stopped for six weeks prior to measuring serum cortisol. This is because estrogen induces cortisol binding globulin and leads to elevations in measured serum cortisol."
The other test is called IG something or other. I think that one is for growth hormone.
But I see 2 dilemmas here, 1. I can't function without HRT, iron, or T3,and I am up to my eyes in battles right now - people are depending on me, and starting to see me as an unreliable hypochondriac. 2. wouldn't continuing the "steroids" cause a false negative, sesulting in a horrible death? I know that sounds melodramatic but I havn't been able to work in 30 years! he even scoffed at that!
No one has mentioned these fasting from steroid preparations.
Have I walked into a trap? should I pull out of this? There are no alternative options in the channel islands, you can't go to another Dr, and there is only one diabetes clinic, so in order to get the scans you have to be almost dead, and demonstrably so.
I know that no one from UK can advise, as this is likely a unique problem, but I want it on record anyway.
Thank you for reading this senseless rant.
Jenny.
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Jenny583
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Oh, you poor thing! I can imagine just how you feel. What a nasty, ignorant pig of a man. And, what rubbish he talks! I wish I could help you, but as you say, we in the UK and elsewhere know nothing of the system in the Channel Islands. I thought treatment in the UK was the pits, I didn't know it could get any worse! If it were me, I'd probably tell him to stuff his stupid tests.
I don't know what the first test is you mentioned, but the second is IGF1, and it's to measure Growth Hormone, although it isn't exactly Growth Hormone. So, that is a pituitary test.
I will take your advice, and also try to phone the clinic and point out their 'error' about the preparation for the tests. It does rather sound like they are punishing me for not dying quietly and gratefully lol!
I knew a woman here who became very cantankerous because of pituitary failure. She battled for years to be tested, in the end she got the tests through neurologist, because she made so much noise. But I seem to be worse, and I used to be so meek and mild!
Everyone told me she was cantankerous because of her medical condition, and I was remembering that as I was exchanging err- words with the Endo.
I think I may be in the same situation, I seem to crash & burn after stress - more and more, but how will it end?
Exchanging words? I'm surprised you didn't come to blows! He certainly deserved a massive clip round the ear.
I should think that a pituitary problem would cause all sorts of problems because it produces quite a few hormones. And each deficient hormone brings it's own set of symptoms. It would be enough to make anyone cantankerous.
Well the doctor is an idiot for saying sports steroids. Considering anabolic steroids are the likes of testosterone and thyroid meds are most definitely not anabolic steroids. Some of these so called doctors are just total cabbages.
Just a thought! As a frequently holiday maker though a few years ago now I e chatted to others about the restrictions etc I don't know whether it is possible or not but my suggestion was as an island that runs day trips to France or an overnight stay in the U.K. whether you can get better help that way. May be find a few links and email them for advice. I also heard that on one of your islands, can't remember which now but I got the impression that they met up to discuss issues so that may be a good first step to ask if any support groups around on any of the islands and see what others are doing a bit near home.
There are no support groups here though, but I do know that I couldn't get treated by anyone abroad, even if I felt well enough to travel, as any tests have to be done here, and those tests require the fasting from all medications, which would mean extreme fatigue and confusion for me, besides I couldn't afford the passport, lol!
If you have hashimotos you can get Armor NDT from US Dr's, I knew a millionairess that did that, but she is a frequent traveller, she had her bowel cancer cut out in france. They wouldn't even test her here! - I don't appear to have Hashi's..
But as I am self medicating for several conditions, my levels are nearly always in range now, albeit low.
Still I am not giving up, even if I manage to get a diagnosis of say - anxiety, that would be an opportunity to test the system, assuming there is a system here.
I am about to post on here some of a letter I received from the locum Endo I saw on Wednesday.
Warning: the following posting contains insane stuff.
Shall look forward to reading that! Sorry you are having such a torrid time. Better make sure on my next visit my thyroid health is up to scratch. I once had words in Boots in St Peter Port. I'd gone in to buy something over the counter and said I can't take anything with codeine in it so unknown to me I was given it! Went straight to pick up my hire car at the Duke of Normandie and spotted it then so I took it back. Well got such a dressing down and yes I know I should have checked but she made me feel terrible but she did exchange it free of charge. There was a programme on a few years ago, think included all the inhabited islands but it was saying how wonderful the hospitals etc were- we must the exception that proves the rule!
Oh dear! so sorry you had to endure that on your Hols?
Guernsey is a sister isle, I went there on a day trip a couple of times, when younger.
I can't take codeine either, when my kidneys were bad in 2010 I was prescribed codeine, but the chemist refused to give me them, she sold me paracetamol instead, but the GP said that she would not prescribe paracetamol, so I ended up having to buy it!
BTW, My Husband was killed by the hospital, they covered it up of course.
Not at all a rant, and although my experiences were at a London teaching hospital, the attitude was remarkably similar- my problems are not unlike yours as well. I’ll pm you in the morning
All the endocrinologists I've seen, including the one that stated he was a pituitary expert, have been ignorant buffoons, both before & after I started self-medicating.
The things I've learned since my pituitary tumour was belatedly diagnosed 6 years ago are not to trust the medics as they cover up ignorance & shamefully inaccurate groupthink with bull****, & to trust the excellent advice on here as well as how I feel with regard to the thyroid medication & supplements I take.
It's YOUR BODY, not a bully ******* medic's!
Hope you find the support & advice you need to start feeling better!
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xxx 
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