NDT/T3 only in UK: Hey guys, I'm new here. I... - Thyroid UK

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NDT/T3 only in UK

MaverickUK profile image
4 Replies

Hey guys, I'm new here.

I have suffered with extreme fatigue for 20 years, mostly mental but also physical. The mental is what stops me living my life though.

4 years ago I had many tests done. I had low end of normal thyroid, positive lupus coagulant test, positive ANA tests, low end of acceptable iron. No diagnosis. I was offered anti-depressants. I could have quite honestly jumped off a cliff there and then.

I've not been back since, I think it scarred me for life. I was made to feel like a hypochondriac.

In April this year the fatigue was just too much. I quit a high paid job and haven't earned a penny since. Luckily I had savings but they're running out.

I'm currently self medicating with NDT and taking 2 grains a day, soon to be upped to 3 grains. I'm feeling a little better but still not good enough to get my life back on track.

I have been reading about T3 only via Paul Robinson, who's story is eerily similar to my own.

I am hoping to find a new doctor in Bournemouth who will take my symptoms and tests seriously and hopefully be prescribed T3 only.

Any ideas how I'll find a new doctor?

Thanks for listening.

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MaverickUK
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4 Replies
Clutter profile image
Clutter

Welcome to the forum, MaverickUK.

I you haven't had a thyroid blood test to check your levels since starting NDT it would be sensible to do so before increasing beyond 2 grains. If you don't want to see your GP you can order private blood tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin... Don't take any NDT for 24 hours before your blood test or you'll skew the results.

Increases are usually in half grain increments. You should hold on 2 grains for 4 weeks before increasing by half grain and then stick with that for 4 weeks before increasing again. This link is informative about dosing thyrophoenix.com/adjusting_...

You can post a new question asking for recommendations for doctors in Bournemouth if you ask members to reply via private messages. Some CCGs don't allow GPs to prescribe T3 without direction from an endocrinologist.

Email louise.warvill@thyroiduk.org.uk for a list of recommended NHS &/or private GPs and endos in your area.

shaws profile image
shawsAdministrator

I am sorry you had to give up your job due to the inefficiency of the medical profession. If they do a TSH and it falls in the 'normal' range they don't consider the symptoms which they used to do before the blood tests were introduced. Nowadays they only go by the TSH and ignore symptoms or prescribe other medication I think just to keep the patient quiet.

It is quite difficult to get a GP who will prescribe T3 only. Maybe if you ask some chemists if there is a doctor who prescribes T3 in your area you might strike lucky.

Some people on NDT find that sometimes they may have to have a high dose to get well.

If you haven't had a recent blood test for your thyroid gland, ask for these to be done (GP may not do them all but ask anyway). Have this test as early as possible, and don't take NDT before it take it afterwards.

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

Also ask for Vitamin B12, Vit D, iron, ferritin and folate.

Post your results, with the ranges, on a new question and members will comment.

These are a couple of archived links (Dr Lowe died two years ago) which may be useful.

web.archive.org/web/2010073...

web.archive.org/web/2010103...

there are other topics at the top of the page.

galathea profile image
galathea

So if you have positive ana and lupus tests, doesn't this mean you have lupus? If so, its a real can of worms which needs someone who knows what they are doing with it..... Its generally treated with steroids. And lack of steroids. ( cortisol) can cause mind numbing fatigue......

Just a thought... In your shoes I would be asking for a referral to someone who knows about Lupus.

G x

MaverickUK profile image
MaverickUK

Unfortunately the ANA and lupus coagulant only indicate lupus. The rest is based on a Rheumies opinion of symptoms.

Because I didn't have swelling in my knees he said it's impossible that I have lupus. Even typing that, fills me with rage.

I guess I need to book in at a new surgery and see if I can get some tests done. I feel like I'm clutching at straws all the time. I could cry.

I also have amalgam fillings which I am having removed asap. So Mercury poisoning is another possibility.

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