where to next?,the light at the end of my tunnel has been switched off. Help. Comments please

Recently changed Dr within my surgery and thought I had made it, He wrote to hospital Endo to explain my issue, We had spoken about when thyroxine dropped by 25mcg I became lethargic low and all that was offered was anti-depressants.But when on my 150mcg I function well. I spoke about my 6 sessions at the gym each week that kept me fit yet never did any weight loss happen. Here is the Endo's response. I am unsure what the GP had put in his letter, obviously he had given previous blood results.

I had a TT in 1999. Had anti depressants on and off for years. Currently off. Fed Up and angry with letter. At 13 stone and being 5ft 4 I am hardly using it in using it for weight loss as is written here.

Dear Dr********************

The thyroid function test that have performed since Dec 2003 all show that she is chronically over replaced with thyroxine.There is a period of time between Jan 2002 and Aug 2003 wher her thyroid function test are within range but between jan 200 and Nov 2001 she is again showing results that indicate over replacement. It is perfectly possible to feel tired and exhausted because you are chronically thyrotoxic and using thyroxine as a method of weight loss is not medically recommended. Having TSH that is permanently suppressed below 0.1mU/L and often completely suppressed below the level of assay detection puts her at risk of developing AF which as you know itself carries a risk of stroke. There is no advantage in putting her on T3 replacement, she just needs to get used to her lower thyroxine replacement dose. Having been over replaced for the past 10 years she is going to find it very difficult to make that reduction,

Yours sincerely

**********

10 Replies

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  • Have you ever tried Armour or Nature-throid?

  • I can feel your frustration and anger. It is an intolerable situation and having TT myself and struggling to get well too, makes me so sad for you. At least my doc is now supplying T 3 only medication for me, provided I am under Dr S. She stated she does not want to be responsible for me, as she knows nothing about this therapy. Would it be possible for you to do the same, if your GP is on your side? You would need a referral from him to see Dr S but I know he would help you. There can be light at the end of the tunnel. Incidentally, have you ever had T3 tested? If it is below the ref range, you would definitely have good reason to ask for a referral to a different endo. This may be your best route. If your GP will not test it, you could have it done privately, together with T4 and TSH for a full picture and then see your GP with the results. Hope you get help soon.

  • hello Hennerton would you be able to provide me with Dr s details through the private message link. Thank you for your response. I have not had a T3 test but have requested it many times, Until recently I was employed by the NHS so always felt to go private was going against the grain.

    My anger and frustration with this letter lies in that as a registered nurse if I had sent such a letter to a Dr they would have queried every detail. ie why wasn't T3 advantageous, what could help with the difficulties I face after 10 years of over dose. had I looked at full holistic picture, were relevant blood tests taken.

    Now I work as a registered nurse in the private sector and not in a clinical setting my point of view has altered. I would happily seek advice elsewhere. The receptionist at the diabetes and endo centre had been lovely to talk to and informed me of another Dr who also had clinics at a private hospital who may have a different approach but a need a referral from a health professional.

    This letter believe it or not really dashed my hopes as I had taken a lot of information of effects of TT and other peoples information from this site. I had really thought I would be taken seriously.

    Thanks for the contact.

    rai

  • Have sent you a message. Hope you find it helpful.

  • Hi. Could you tell me who Dr S is thanks

  • Hello Hennerton can I ask you, if I can get my GP to refer me to Dr S, will I be able to see him as an NHS patient (as opposed to private) Thanks Jeannie

  • I think the answer is a definite no but you can always ask. I have never known anyone see him as an NHS patient.

  • ...interestingly a friend of mine here in Crete has recently had her thyroid removed with cancer and was put on T3 immediately by her Endocrinologist. Some 8 years ago another friend had the same op whilst under the care of the same Endocrinologist - with pre-cancerous cells in a FNA - and was prescribed T4 post-op. Am thinking that there has been a shift in the thinking of T3 v T4...maybe I will have the chance to ask him one day. I also sense this on this forum - T3 is mentioned more often than before and I feel more people are aware and being treated accordingly - if it suits.

    The Endocrinologist concerned - Mixalis Boukis - was at one time the President of the European Endocrinologists Association - or some such group. He is based in Heraklion and Ryannair and Easyjet fly there. :-)

    Does your Endocrinologist have your FT3 reading ? and are you converting T4 into T3 ? It would be good to know these figures and ranges. I feel your frustration - there was an earlier post saying that weight loss happened for her when her Iron levels were good. Have you had the Famous Five tested - B12 Ferritin Folates Iron and D3 ?

    Hope you soon feel better.........oh and congrats on the gym activity !

  • will be looking at private blood testing Marz, just fed up.

    The gym keeps me sane for many reasons and I had only mentioned in passing of my lack of ability to loose weight.

    Couldn't even bring myself to go last night or this morn basically due to have a long frustrated cry and my eyes looking like one of those bulbous goldfish crossed with a bassett, Not sure how I would get referral to forgien climes but I will follow this lead also. My next request will be blood tests for all the above.

    By the way even your name make me hungry!!!!

    Rai

  • Can I ask, who are Dr S and Dr P I keep reading about in various posts?

    Thanks

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