Thyroid UK
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Chronic fatigue specialist hates Thyroid Uk and PAS

Hi All

I had my CFS appointment yesterday, seemed very pleasant but told me that his 2 pet hates are Thyroid Uk and PAS.

I've walked away without a CFS diagnosis (no *hit serlock) so my next plan is to save for some private bloods.

However, he thinks I have coeliac disease and to stay off Levo (which I have for a month) then go back to my gp for antibody tests. Graves, Hashimotos, Pernacious Anemia and Ulcerative Colitus runs in the family.

My gp refuses to do thyroid tests let alone antibody, or any other for that matter. Feeling resentful, already lost 10 years of life to this disease :(

13 Replies
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Rather unprofessional, perhaps he feels threatened in that his patients are coming to him with an indepth knowledge of their condition and therefore expecting him to have the same!

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Good point! TUK provides an excellent info...

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Probably means those two sites are doing a great job. I’ve just paid for private tests - I know all the thyroid ones are weird but wanted to retest for TPO which were extreme a few years ago, coeliac and a repeat ANA. Also positive.

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Coeliac test is notoriously unreliable and most with Hashimoto's or leaky gut (which leads to autoimmune disease) are gluten intolerant for which there is no test.

Or due to leaky gut the gluten and/or casein from cows milk cross the gut/blood membrane and raise antibodies

amymyersmd.com/2015/07/the-...

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I think I’m only intolerant. But thought I’d add it to the list while I was at it. :)

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You need to know results for TSH, FT4 and FT3. Do you also have high thyroid antibodies? You need to know.

If antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. Important to test these. If they are too low they stop Thyroid hormones working.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting

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Hello again

I havnt had any bloods done since May, doctor refuses to do anything now.

Until I can get some money together, Im stuck on any bloods at the moment.

In the meantime, can anyone advise on the following:

My blood pressure rose on standing from 72 up into the 90's and my walking has become such an effort, now cant stand for too long. They feel like they swell up and become very painful. Expecially in the outer hips and lower back. I think I expereinced these problems before, but when your good you forget about when your bad until your real bad.

Thanks

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My blood pressure rose on standing from 72 up into the 90's

I don't understand this sentence. Do you mean your heart rate rose? That isn't the same thing as blood pressure.

I think most people's heart rate rises when they stand up. I know mine does.

If your heart rate goes up by more than 30 beats a minute when you stand up then you might have POTS - Postural Tachycardia Syndrome.

potsuk.org/gp_guide

I don't know if the feelings of swelling and pain that you get are related.

I've walked away without a CFS diagnosis

I'm puzzled about why you might want a diagnosis of CFS. In the UK, once diagnosed with that all your symptoms will be blamed on the CFS, you won't get any treatment for anything, and you'll be assumed to be faking all your symptoms and "choosing" to be ill.

I would move Heaven and Earth to avoid a CFS diagnosis.

.

Did this CFS doctor give you any more detail about why he hates Thyroid UK and PAS? Was he a private doctor who was losing patients?

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Hiya

I'll explain better.

When I'm not taking levo, all my hypo symptoms are horrendous. Although, they only to a certain point.

I am back to feeling how I did before I saw Dr S all those years ago.

Im assuming I have Hashimotos as all my bloods over the years are so called normal, I have only been medicating all this time to elivate symptoms. whch helps enormously (as said my latest gp is not giving to me)

Heavy legs, not being able to walk easily a times, assuming I have very swollen legs caused by water retention. I have every single other symptom listed on the Thyroid Uk website which all went away.

Im trying to get a NHS gp to give me the medication but not getting anywhere and gp has refused to do any more thyroid tests.

I havnt wanted a CFS diagnosis, its where I have been dumped by my current NHS gp.

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I think you need to change your GP. Your current one sounds useless.

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Rather than leaving it to fester, perhaps your CFS person could explain quite why his pet hates are TUK and PAS?

If it is when someone insists that everything is thyroid alone, or B12 alone, then I could possibly see a point. But simply ranting to patients seems utterly pointless. Far better to make contact...

(My pet hate is people who have pet hates. :-) )

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totally agree

TUK and PAS are patient support groups works and both are known to be highly effective in working with others including medical professionals to improve patient care for their respective conditions so difficult to see why any specialist should have them as pet hates. Both organisations want to foster good relationships between patients and the medical professionals that treat them.

Both support forums on HU.

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What were the result of your last blood tests?

Also you should ask for a copy of all your blood tests of 10 years back if you do not have them already.

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