Getting Hashi treatment for my 20 yr old daughter?

My 20 year old daughter is following the family pattern of thyroid disease. She is at Uni and has had positive test for high antibodies last year and they wanted to wait and re test. Through the summer she was always freezing cold and sleepy, gaining weight, no energy. I also noted that her neck is swollen. I told her to go back to the doctor and ask for ultrasound for her neck and more tests....iron vits etc, the few that they would run are TSH 3.19 (0.34-5.6) FT4 9.4(7.5-21.1) , the other tests they say they want to do in three months time. In the meantime they have asked her to lose 1.5 stones and take a multi vitamin!!

To me it is obvious she has Hashimotos and is glaringly I wait for the doctors to prescribe or do I suggest that she self medicate? I have sent her Nutri Thyroid as supplement support and I will also send her Vit d3 she has also recently gone gluten free.

Making the decision to self medicate myself after years of being undertreated for Hashis is alot less scary than suggesting this for my daughter, overriding a GP decision is still difficult but worse would be watching as my daughter struggles to function until her thyroid completely packs in thoughts are to start her on thyroid hormone before it gets any worse or tell the doctor thats what we will do if he doesnt. Any advice , experience or insight would be much appreciated. If it comes to it I would get her a private consultation with the endo who had helped me get T3 treatment . Thank you in advance for any feedback

8 Replies

  • This is what states:-

    Doctors have no idea of how unwell we can be with a thyroid gland dysfunction. Neither do they know anything at all about how to take account of clinical symptoms first and your daughter has symptoms which they should take into account.

    Dr Toft of the BTA states in his article that if antibodies show that no point in waiting but to start a dose of levo between 75mcg and 100mcg. Email if you would like a copy of the whole article.

  • If you can afford it, might be a good idea to make an appointment with your private Endo. He knows your own thyroid history, which may help with decisions on when & how to treat your daughter.

  • Yes SlowDragon. I think it may well come to that, I will let them do the ultrasound and see what the outcome is.

  • Imagisal, it has to be your daughter's decision whether to self medicate. Pro self medicating is that she will probably feel better and prevent symptoms getting worse. Anti self medicating is it will prevent her getting a NHS diagnosis which might take years anyway until TSH is >5.6. A private endo may agree to start treatment when TSH is >3.0 but it will be up to your GP whether to follow the recommendation of a private endo and your daughter is not guaranteed to get the treatment on NHS.

    Cutting out all gluten may help reduce Hashi flares, antibodies and slow progression to hypothyroidism. Several members have also found it to help with weight loss.

  • Hi Clutter, yes of course but I think she would give my opinion quite a bit of credence so I want it to be a very well informed and balanced one and then the decision is hers. Thank you for the links. I will wait to see how she goes with the gluten free and Nutri thyroid and also how the ultrasound goes.

  • Imagisal, of course she'll give your opinion credence, especially as you've had to self medicate to improve your own condition :)

    NutriThyroid may help for a while too.

  • Hi, my daughter is 21 and at Uni also and last year she started having hypo symptoms . After a bit of a battle with one GP she finally got a referral to an NHS endo. She was started on 50 mcg of levo with a TSH of 3.49 which was eventually put up to 75mcg by her new GP.

    I am obliviously not happy she's hypo but I am glad she was started on treatment as I didn't want her to struggle like me as I too am hypo and I had to go private to get my treatment.

    The thing is since she started the levo she has developed really bad acne. She has never suffered with it before and it was getting to a point through the summer where she did not want to go out She came to me and said she was not going to take the levo anymore . I tried to explain she couldn't just stop but needed to see her GP.

    She asked if she could try NDT , which is what I am taking.

    I had enough supply but like you I feel treating myself is ok but I'm not a doctor and was a little reluctant to give it to her.

    After thinking about it for a while I agreed and she has stopped the levo

    and has started on NDT very slowly . She takes her temperature and checks her pulse and blood pressure which are all fine so far

    and I will order her a private blood test to check her levels.

    She has been taking NDT now for 4 weeks and her acne is starting to clear up.

    I want her to eventually tell her GP about this and I might even take her to see my endo as I still worry as I am not an expert.

    I wish you luck with your daughter

    Angela x

  • Hi Angela, thank you so much for sharing the experience of your daughters treatment. It gives me a lot of back up and ideas of how to support my daughter and get her the optimal chance of living well despite thyroid issues. The info re acne is very useful too as my daughter has a form of acne already called hydronitis supporitiva and Levo might make that flare. Best wishes for your daughters NDT trial I hope she continues to do well with it. Thank you again. I just don't want my daughter to struggle with all the issues and fallout of thyroid illness, especially if early intervention can prevent her from having the myriad miseries it can bring. Thank you again x

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