Why do we bother!!!!

[PatsyCline]

Just wanted to get this of my chest. Has TT due to nodules in 2008 and have been up and down (as has my Levo dose) since then. Went to see a recommended endo last year who was open to T3 if necesssary and gave me a urine test, blood tests for vitamin deficiencies and advice on what to take, cutting down on carbs etc. Went home feeling very positive. Received copy of letter he sent to GP a week later.

Went back last week and saw one of the endo team. The Endo was apparently on holiday (although he was wandering around the department! ) Well how disappointed and furious was I after my appointment...... My blood tests were normal - wouldn't give me results, but I could be slightly overmedicated - danger of heart attack, osteoporosis etc. I mentioned something the Endo had written in his letter. "Oh why are you doing that" I was asked most huffily. They obviously hadn't read his notes or knew what he had recommended. I asked whether it would be possibly to trial T3 as I was still having symptoms. The symptoms are not anything to do with my being hypothyroid but caused by lots of other things! Anyway the British Thyroid Association doesn't advise taking T3 and no longer recommends blood tests for T3. I asked if I could have a copy of any letters they send to my GP. "Oh we don't normally do that" again huffily. I said I wanted a copy. I had to have a blood test for TSH and T4 and Bone. They don't test for vitamins etc every time. It's been 5 months since my last appointment . I have to have 2 more blood tests. One in a month or so and another a few months after that. They are both just for TSH, T4 and Bone. No Vit D, B12 and the usual suspects which were all done before. Oh yes, my Vit D is okay, its always low at this time of the year but will increase in the next few months! The clinic is so busy they will ring me up and discuss results over the phone. There were no other patients in the whole of the clinic whilst I was there. Why do we bother........ Rant over, thanks for reading.

[UrsaP]

Are they allowed to deny you your results? I don't think so. And most actually now give you a copy of letters sent between them...if they have nothing to hide they would not have a problem. I would insist. Or report them. Questionable why they don't want you to have them?

The only reason not BTA not recommending and testing for t3 - ££££££

[PatsyCline in reply to UrsaP]

I was quite annoyed at the person's attitude. Previous Endo's have even shown me the screen with all my results on and asked if I wanted a copy of any correspondence. As you say all comes down to money as usual .

[UrsaP in reply to PatsyCline]

Yes but check your rights too. I don't think they are allowed to deny you copies of your information, check out Data protection regs.

[PatsyCline in reply to UrsaP]

Thanks will do.

[Clutter]

PatsyCline,

How can your blood tests be normal but you are overmedicated at the same time?

The Data Protection Act entitles patients to their test results and ranges. Write to endo making a written subject access request for your results. They have up to 40 days to comply.

ico.org.uk/for_the_public/t...

If you want FT3 tested you can order a private thyroid test via thyroiduk.org.uk/tuk/testin...

[PatsyCline in reply to Clutter]

I will wait and see if I get a copy GP letter in the next week or so but I shall certainly write to my GP outlining my dissatisfaction . I will certainly consider having private blood tests for everything if I get no satisfaction elsewhere.

[PatsyCline]

I have now received an appointment for telephone consultation with the Endo himself so hopefully this time when I speak to him (in a few months) I will be able to obtain more info as he was very helpful and informative the first time we met.