Thyroid UK
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Where do I go from here?

I have been on T3 for nearly 20 years. Firstly through private doctor then buying NDT myself, then about 4 years ago an NHS endo, having done many tests to prove to me that I do not need it, found that in fact I do. So he arranged for my GP to prescribe it.

Because of the recent business with stopping T3, my GP sent me to an endocrinologist. I saw her about two months ago. She told me that she sympathises with my plight, but she has been told that she has to wean all patients off T3 and that is what she is going to do (I presume only doing tests that where the results are so ambiguous you can reach any conclusion) and that there is no more need for me to see her and I am therefore discharged. When I went to get repeat prescription at GP's it was denied me. I wrote to GP with a copy of the BTA's Q and A to GP's.

I saw my GP yesterday. I asked if she had read my letter, which she had, but told me there was no point to me discussing it with her because the NHS have stipulated that GP's cannot write prescriptions for liothyronine and only the hospital can. Even though I tried to point out that she could, she would not listen to me and said she cannot go against the NHS ruling and that I must take it up with the hospital.

However, the hospital has discharged me. I told her this but she just shrugged and moved on to discussing my recent blood test (iron low so she is prescribing that).

So where do I go from here? I have copies of what Thyroid UK say, what Dr.Toft has said and other useful papers but if nobody is going to read them who do I go to?

I am stuck between a rock and a hard place. I feel a bit like a ping pong ball.

Who actually is in charge if my well being? Whose responsibility is it?

I also question the knowledge of endocrinologists if one says I do need it (after extensive tests I might add) and the other (although she didn't say I do not need it) has discharged me without a prescription. She did tell me there was a test to show whether I need it but the NHS do not do it and she did not tell me the name of the test. I went and had a private DNA test done but that was inconclusive as it was very contradictory. One bit said I possibly do and another bit said I possibly don't. However, my body tells me I do, and in fact, blood tests when they do T3 show either below range (when I haven't taken any) and when I had a blood test when I had taken some it was only 0.5 over the range. In fact because my appointment was her last one, near lunch, the endo more or less gave me the bums rush. Again, although she did not say it in so many words, it felt as if she was saying no point in discussing it with you because I have been told what to do so I must do it, so that's the end of it.

So what is meant by discussing it with patient. In practice it means you sit there whilst patient rants on about how ill they are without it, then tell them they are not getting it anyway. End of discussion.

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Hello I just logged on to this site to ask people's experiences of taking T3, as I am having bad side effects from Levothyroxine. I noticed your post. I have just ordered T3 online, as I know my GP won't prescribe it. Could I ask if you have found it helpful and what dose you started at? It's quite cheap to buy online. Thanks

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Yes, thank goodness we can get it online. I had to start by getting the levothyroxine out of my system (a few weeks). Then started on 5 mcg T3 in the morning, for 3 days. If OK I was to increase so it was 5mcg in morning and 5mcg mid day. Again for 3 day, if OK increase with 5 mcg in evening. Again 3 days and 10 mcg in morning, 5 and 5 then after 3 days 10 am then 10. Then I slowly added levothyroxine starting with 25mcg once a day for a month, then increased by 25mcg. I found that I could tolerate the T3 during the day but the evening one was not quite right (not sure whether it was keeping me awake or making me feel hyper - 20 years ago is a long time). Anyway it took several months to work out exactly the dose which suited me (40 mcg T3 and 100mcg T4) and it has been the same for all this time. This works out to 4 grains Armour (or equivalent NDT). Doing it this way (under supervision of private doctor) I had no side effects, and no problems.

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Complain to everyone. If she started by telling you she has no intention of prescribing it that is not a clinical discussion simply rationing. Complain to CCG, PALS, GMC for both consultant and GP. You have years of successful treatment records. You have to fight this aggressively. Also local paper and MP. Make a noise.

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See or write to your own MP, also cc Jeremy Corbyn (he just asked PM question of Theresa May on this issue), Lord O'Shaughnessy too

theyworkforyou.com/search/?...

Clear legal outline that your GP can (and should) prescribe

healthunlocked.com/thyroidu...

So have you had DIO2 gene test?

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

Essential to test vitamin D, folate, ferritin and B12 if had T3 stopped, levels often crash right out

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Thanks Slow Dragon. I have pernicious anaemia so get B12 injections every three months, and I understand my folate is OK. Vitamin D has not been tested and I do suspect that might be low. I supplement with it when it occurs to me. My ferritin is very low and so is my haemaglobin and high white blood cells. GP was concerned about that and has now prescribed iron (which I will take more than 4 hours away from thyroid meds). I presume the DNA test included D102 (which I had taken from Horizon) but it was not conclusive. Some said I could have a conversion problem and other parts said I haven't. So mine is possibly not a gene thing, but when I am taking it my symptoms go and without it they come back.

I do not want to complain too much about GP @cwill. I have already been struck off from one of the doctors in the practice because he was the one who told me I had to stop T3 and I spent hours printing out all things for him to look at. He just took them and right in front of me dumped them in the bin. I argued with him and he struck me off. Fortunately I was given another doctor in the practice, who said I could carry on buying the T3 but he would take no responsibility for anything to do with my thyroid. I find it difficult enough to get to this surgery so really do not want to change.

My MP is absolutely useless. I have written to him before regarding T3. All he does is send it to Jeremy Hunt, who sends back a stock reply, and my MP passes it on to me. I am not sure any of them actually read it. However, I like the idea of writing to Mr. Corbyn and Mrs. May, and Lord O'Shaughnessy. Going to look at it now.

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The fact you have PA and low iron means compromised gut function.

When on B12 injections its recommended to supplement a good vitamin B complex containing folate (not folic acid )

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

20% of T3 conversion should occur in the gut.

Anyone with gut issues on T4 is likely to need T3

You can test vitamin D at

vitamindtest.org.uk £28 easy postal kit.

See Improve Thyroid Treatment campaign on Facebook for list of CCG's and policies on T3 plus numerous letter templates etc

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