new to the site

my daughter has hypothyroidism and downs syndrome, the hypothyroidism was diagnosed about 6 years ago and her levels have never been right at ome point she didnt need levothyroxine but 3 months later put back it on it. recently she has been having low moods and had a blood test done and levels wer above the range should be between 10 & 22 and my daughters were 30.5 so gp has said stop the levothyroxine for a few days and restart on a lower dose.

any advise would very much appreciated i.e does this need investigating further or is a referral to a endocrinologist better for my daughter so it can be monitered better

many thanks

4 Replies

  • amandajayne32, I'm sorry you and your daughter have to contend with downs syndrome as well as hypothyroidism.

    Unfortunately, even if some members see an Endocrinologist they sometimes are no further forward in their treatment.

    Can you get a copy of your daughter's blood test results with the ranges and post on a new question if you don't have them to hand and it will enable members to comment upon them.

    To be told she is hypothyroid and then adjust her levothyroxine doses willy nilly then stop it altogether is wrong. If you put up a new post and give your area, asking for a Private Message to be sent to you if anyone has the name of a good Endocrinologist and hopefully you will get a name. It would seem that her doctor hasn't much knowledge about treating patients with hypo and most of us have had to learn ourselves how best to improve our health.

    When she next gets/or is due a new Blood Test, it should be as early as possible, and fasting. Levothyroxine should be taken after the blood test and about 24 hours should elapse between her last dose and the blood test. Also ask for Vitamin B12, Vit D, iron, ferritin and folate too as we are usually deficient. Also ask for antibodies to be done.

    Also email for a list of doctors. Some may be private.

  • Thanks Shaws for quick reply, a quick question I spoke briefly with the nurse this morning regarding the high results as I was thinking my daughter is presenting as hyperthyroidism now instead of hypothyroidism and asked whether this was the case the nurse confirmed that my daughter is now hyperthyroidism but is still being treated with levothyroxine is this the right c course of action.

  • Your daughter must have an Autoimmune Thyroid Disease otherwise called Hashimotos. I shall give you a link. Yes, levothyroxine is the same as for hypo. The reason is that it is antibodies in your daughter's blood that is causing havoc and attacking the Thyroid Gland, sometimes there's lots of antibodies and sometimes very little. So she will swing between hyper and hypo. Eventually she will be hypo when the antibodies have finished with the thyroid gland.

    Going Gluten Free can help reduce the antibodies.

  • Thanks again shaw that's put my mind at rest

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