worried mum

hi there, I would just like to thank everyone for all the responses i have had regarding my daughter, I have a lot to digest now but will keep you posted on our journey, just in case the thyroxine does have any effect when should i expect it to start to work? she is on her 5th day now and is starting on 50 mg and is expected to go to 200 approx. many thanks Lorraine

4 Replies

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  • Give it a few months until they have upped her dose as50mcgs is a small starting dose. Hopefully she'll start to see a difference quickly but it may take a while.

    In the future she may need to add T3 or swop to NDT to really feel well but you can play that by ear.

    I recommend you read as much as you can, I think I recommend some good books in my last post.

    Absolutely imperative though that they check her antibodies, as she may need to be gluten free and B12,Vit D, folate and feretin as she won't feel better if these are deficient which is HIGHLY LIKELY.

    Good luck.

  • much depends on what the status of

    ferritin

    folate

    b12

    vit d3

    is because unless they are all at least 50% of their ranges the body simply cannot utilise the levo and convert it into the t3 that every cell in the body needs to function

  • Please remember that thyroxine works for the majority of people and that mostly these people who are well and live normal lives taking it in general do not post on this forum. Good luck

  • Hi Lorraine,

    For some reason my previous replies disappeared?? So, I will try once more. It must be incredibly worrying, heart breaking even, to see your daughter unwell and have to go on medication. I know how my mum felt. I am not sure how old your daughter is, as I did not see your original post - Has her gland stopped working, or only partially working? For a small gland, it has a big part to play.

    In answer to your question, it is very likely to take some time to adapt and go from 50 mcg to 200 mcg before she starts feeling well again. 200 mcg is my natural dose and I was on it from a young age (not sure what dose I was on as a baby, as I was born with a partial non functioning gland) up until I was 32 (the next 20 years were a night mare, another story for another time) But I am now back on 200 mcg and I currently feel great.

    Just to warn you though, your daughter may experience mood swings, weight gain, heavy periods, sleepiness, brain fog, even fluid retention, before it gets better and it will be heart breaking for you to see it. My worst symptom was frustration and irritability. I felt I was going out of my mind.

    People including the professionals, do not comprehend what it is like to have a thyroid condition, let alone the medication side, some certainly do not understand the mechanics of it. People will raise their eye brows and not understand what you are going through. If in doubt, question everything, seek a second opinion if you feel it necessary.

    It maybe in time, perhaps not now, that your daughter may develop anaemia, B12 deficiency and vitamin D deficiency too. They are similar symptoms to the thyroid, so I would suggest your GP should test your daughter anyway. If the results come back normal, ask for the ranges and keep a record of it. Same every time she has her thyroid levels checked, keep a note of the ranges and levels. The reason I say this, is my sister who also has a thyroid condition was told her ferritin levels were normal and when I questioned it, I was told it was the low side of normal and that she would need a iron supplement. Thankfully she is fine now.

    I am sorry if my reply sounds all doom and gloom, but fortunately it does get better and your daughter will likely lead a normal life, it can just take time.

    Take care and feel free to ask for more information. :)

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