Seeking a little advice please?

Hello all

I have learnt a lot since reading your posts and responses as I have been a long time lurker!! I would like to ask a bit of advice -

I have been Hypothyroid for many years and spent most of this on T4 only treatment and felt more and more unwell. I was referred to an Endo and now take T4 and T3 hoiwwoever the previous endo said that I do not convert the T4. Roll on a year and incorrectly diagnosed with PMR and given very high steroid doses for a year. the referred back to another Endo and he insists that it is my T4 levels that are incorrect as my TSH is too high. He has increased now to T4 275 and the T3 remained on 20mcg a day split over 2 doses. I felt horrid and so poorly.

I have now tried to increase my T3 and have currently managed to go from 20 to 35mcg a day and feel a bit better but not yet right as I seem to lack any stamina and feel fatigue all day but my high blood pressure and fast heart rate has reduced a bit too. I feel that I need to increase again but do not have enough prescribed T3 to manage this without running out in a few days. Would it be possible for some kind person to message me with where to purchase this, I understand that it can be purchased from Greece.

I have recently had more blood tests as I am off to see the Rheumatologist this afternoon as she thinks I may have Fibro instead of the PMR. I will try and get a copy of these while I am there.

Many thanks

Cleo

3 Replies

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  • Cleo3 If you post your recent thyroid test results, with reference ranges, then members will get a better picture and be able to offer suggestions.

    I assume that as you are on T3 then you are getting FT3 tested as welll as TSH and FT4.

    You're on a very high dose of Levo and for you still to remain so unwell suggests that conditions may not be right for it to work properly.

    It would be an idea to get the following tested:

    Vit D

    B12

    Folate

    Ferritin

    All of these have to be at optimal levels for thyroid hormone to work. Doctors don't seem to know this, they just go by the numbers of the thyroid tests and treat those :(

    Also, being hypo for a long time and still being so very unwell, your adrenals could very well be stressed. Adrenals and thyroid are connected and if your adrenals are stressed then you'll have problems with your thyroid. You might want to do a 24 hour saliva adrenal stress test. You can get this done with Genova through Thyroid UK. Details on this page of how to order a Genova test and how to obtain your results thyroiduk.org.uk/tuk/testin...

  • I'm sorry you aren't feeling so good and I'll give you a couple of links which might be helpful.

    If one Endocrinologist said you weren't converting T4 to T3, then you should be prescribed T3 only. It is T3 which is the active hormone required in our receptor cells and if we don't have sufficient we can get other clinical symptoms. Levothyroxine HAS to convert to T3.

    If the suggestion is fibromyaligia this is due to a resistence in your receptor cells to thyroid hormones and usually the person needs a very large dose of T3 to alleviate pain/symptoms.

    The following links are from a scientist/researcher/doctor who ran the Fibromyalgia Research Foundation before his death.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • Thank you for the advice - it makes interesting reading. I forgot to ask for my latest blood results form the consultant yesterday as I was stunned at the information I received and it left me shell shocked. I do indeed also have Fibro as well as the Hypothyroid however there is no medication that she can prescribe to help as I also have a compromised liver and all the medication she thought of are hard on the liver. So no treatment at all just pace yourself and rest.

    So after a few hours of feeling sorry for myself I am more determined to resolve this myself as I feel better on T3 but dont feel that I am taking enough.

    Please can someone advice where I can purchase more of this. From reading posts I see that you can get it from Greece, would it be possible for someone to pm me where i need go for this?

    I will call the Rheuy Consultant's secretary to ask about blood tests and will post when I get them.

    Many thanks

    Cleo

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