should I wait to see an endocrinologist?

I have been taking medication for an MPN ( high platelets) and about 2 years ago, it was observed that I had problems with fluctuating TSH levels. I reduced the medication by over 50% ( Interferon Alpha). I currently have some symptoms of hypothyroidism ( severe eyebrow loss, hair loss, weight gain) but have been taking supplements including a B complex and L Tyrosine which appear to help the mood swings and improve my energy levels.

However, I am upset about the hair loss and weight gain and my GP feels if I took Thyroxine that would solve it.

Having read the various posts on this site I am not so convinced and don't want to end up with a drug that causes even more problems. I have asked for a referral to an endocrinologist but feel that the current NHS funding crisis means that this is probably not as easy as it should be.

There is a possibility that I could get a private referral but I just wondered if I was being over cautious and if anyone else could share their experience of taking small doses of thyroxine for fluctuating TSH levels.

Also if I do start taking thyroxine, does that mean that I would be taking it forever?

Thank you for your comments

3 Replies

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  • A fluctuating TSH may suggest that you have Hashimotos - or Auto-immune Thyroiditis. It would be good to have a full profile done - TSH - FT4 - FT3 and Anti-TPO - Anti-Tg to clarify. Taking T4 is not a drug - but a hormone - so that may change the way you think about medication. Yes it is usually for life. A trial would be a good way of finding out - but best to check for the anti-bodies first.....

    Many people do well with T4 and only the ones with difficulties report here on the forum. It's good that your Doc wants to support you with thyroid hormones but I personally would like to check out the auto-immune status first.

    Have you had Folate - Ferritin - Iron - B12 - VitD tested - these at an OPTIMAL level will enable you to feel stronger. The results need to be towards the TOP of the range - never accept normal - and the Ferritin needs to be around 80....

    If you wish to go privately - then it may be best to consult the list of sympathetic Docs/Endos available from Louise Warvill - Admin.

  • Hi Florence, Marz has covered many good points and your metabolism is at risk when your thyroid is not producing. That has so many repercussions because the thyroid is part of a loop of mechanisms that impact each other.

    Of course, replacing hormone is the no-brainer and is cheaper and easier than determining the actual cause. This short video gives you an idea of the importance of this loop and its efficiency but he suggests that mostly genetics are the cause. I'm not sure that is true. I'm also posting a link to an article with many links covering the processes involved with hormone distribution.

    nahypothyroidism.org/deiodi...

    I don't blame you for being cautious about starting on this mass production of thyroid treatment.

  • Florence, hypothyroidism is a lifelong condition and replacement hormone is for life. Most people do well on Levothyroxine especially when they correct low/deficient ferritin, vitamin D, B12 and folate which are common in hypothyroid people. It would be better to start Levothyroxine now than to wait until your symptoms become worse and take longer to resolve.

    The usual reason for Levothyroxine not working is that patients are undermedicated, although there are some who need T4+T3 combination therapy or are unable to tolerate synthetic T4+T3 and need NDT.

    NDT isn't licensed for use in the UK so it is rare that GPs and endocrinologists will prescribe it and most patients have to buy it on the internet.

    thyroiduk.org.uk/tuk/diagno...

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