What now please? I'd really appreciate advice and info

Following unrewarding consult with endocrinologist please could I have advice on what to do now?

Has anyone seen Dr P (hope that's allowed) and if so, please could you tell me what your experience was like, what he explores and what he advises on (diet? vitamins? T3? faulty D103 gene? etc?)

Can anyone recommend a private endocrinologist or doctor who is interested in all aspects of thyroid problems and in the patient right in front of him/her?

PS Endo although telling me she did not want to give T3 'because it would worsen the osteopenia' she informed me I have (tho GP said test results were fine!) and instead has advised increasing my dose of Levothyroxine although for a long time my TSH has been suppressed - which apparently increases the risk of osteopenia! So it's okay if the osteopenia worsens because of T4 but not because of T3!?

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  • In which case why not save your cash and simply order NDT online as my lot do

    Then you get t4 t3 t2 t1 and calcitonin and like my husband the osteopenia will lkkely disapear

  • Thanks for your suggestion reallyfedup, it sounds absolutely perfect but I'm vegan and will turn to something extracted from a pig only as a last resort because I don't want to cause suffering to another feeling being.

  • Well i think you will find that NDT is the only effective answer to your pronlems ...i understsnd your dilemma but your health has to be ultimate important factor

  • More likely you have (or have had in past) low vitamin d / magnesium if you have bone & osteomalacia issues.

    Have you had Vit D checked? What about B12, folate and ferritin ?

  • Thanks SlowDragon and yes, all these checked and I have been supplementing where necessary for some time. Ferritin is not responding though. My own theory is that the low ferritin is interfering with conversion from T4 to T3 so I remain hypo with poor absorption and that with a little short term T3 I'd become euthyroid, ferritin would rise and I'd be able to do the T4 to T3 conversion.

    Endo would not even begin a discussion around this though and I don't want to guess so I'm looking for someone medically qualified to support me.

  • Do you have Hashimoto's ?

    If so, are you gluten free?

  • Hello again SlowDragon, yes I am gluten free and the test for antibodies indicating Hashimoto's was negative - though I know that can happen even when a person does have Hashimoto's. I have not had the more reliable private tests done which is part of the reason for my asking if anyone can recommend a good endo/doctor. I have in the past paid for private consultations which were totally unhelpful and wish to avoid that mistake again.

  • Just wondering what your calcium levels are like. I assume it is difficult with a vegan diet to get enough calcium.

    As I understand it...Low calcium levels can hide low vitamin d levels.

    I think this is why if have coeliac or gluten intolerance and go gluten free, calcium absorption improves, then revealing hidden low vitamin D. (And causes temporary leg pain as calcium and Vit D increase)

    Presumably the same might happen if diet is too low in calcium, causing hidden low vitamin d?

    Have you had a bone blood test - calcium, Pth, magnesium and vitamin D all at same time.

  • Check out drmyhill.co.uk to read up on the protocol she suggests for osteoporosis - good advice there about supplements.

    drmyhill.co.uk/wiki/Osteopo...

  • Thank-you very much Marz, I'll have a look.

  • Research Armour thyroid meds or desiccated thyroid meds

  • Thanks LeVern but I am vegan and have answered this advice already.

  • I can't see why you can't try some T3 and agree with what you say about the logic ( or not!).

    I can recommend an endo who would help you. Message me for details.

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