help please I am new and very distraught

Hia I am new to this site and really don't know where to turn I was ill for along time before they found I was slightly overactive and had a multimodular goitre on closer inspection told it would turn nasty if I have radiation therapy I was on 5 mcg of carbizamole and levels were normal leading up to treatment, I then 2 months later went really under active my bloods were off the scale for 4 months and I was discharged from the hospital clinic without knowledge I was collapsing couldn't move and had a suspected stroke!!! Thank god not but just sooooooo under active my body couldn't cope. Then my eyes started going funny and only my appointment with a neurologist suggested that I had thyroid eye disease with me being discharged I had to try and get the endo to see me ASAP which as u all know is difficult and he blamed me coz I smoked but he never gave me any info about TED and then wanted to do IV steroids but was going to Devon on holiday which he criticised and gave me oral steroids instead which we're horrendous never felt so ill in all my life and I have been ill now for 10 years more so after radio iodine treatment he covered his back and I couldn't bear seeing him again coz he just didn't care and was rude and I couldn't take it any longer. I changed endos she was great to start with all big words and no help my eye doctor is amazing but it's getting worse I also have pre tibial myxedema due to the TED I'm on 300 mcg of thyroxine endo thinks I'm ok I'm far from it I can't even walk the dog without paying for it the next day I have no life really last letter from endo I ripped up in anger coz she said I was getting better!!!!!!!! I don't know what to do my son and husband are suffering too I ad to leave my job and now in severe debt please can someone help me my gp has said he doesn't know what to do with me the endo has dismissed me really no one has time for me is 300mcg a lot what if I'm on the wrong drug all they are going by is my tsh level 0.16 and free t4 19.5 this is year 3 since radio iodine and I'm no wiser to wot this means and have TED hypo and pre tibial myxedema now please can anyone help me x

4 Replies

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  • Welcome Julia and we will try our best to help you. I am not medically qualified but I have read your previous question asking if 300mcg of thyroxine is too much.

    Before the TSH came into being, the usual dose was between 200 and 400mcg. What are your symptoms that make you think you are on too much. Normally that would be a very fast hear rate, nervousness etc. Thyroxine itself is quite inocuous but the binders/fillers may affect you. It did me and I had to switch. Usually, if you are overstimulated you miss the next day's dose and reduce the dose thereafter.

    If note your thyroid gland blood tests (next time get the the ranges as labs differ) someone will try to help, especially if the have Graves. I note too, that you have had RAI and are now underactive.

    I have looked at this link and you may get some info from this. I had never heard of it before and I also note you have TEDS.

    ncbi.nlm.nih.gov/pubmed/162...

    As I said, I am not medically qualified but your doctor should maybe add T3 to your T4 as that may be helpful. You can have a suppressed TSH but some GP's are worried. If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse article by Dr Toft, there is good info for your GP. He does say that some need to have a suppressed TSH and also some T3. If your GP is kind and helpful if may prescribe T3 alone. That benefited me when I was awful on levo (I was hypo thankfully not as bad as you).

    Louise also has a list of NHS Endos and one may be near you. I think you should be under the care of a sympathetic one.

    I think too, before Endos do surgery they should tell you exactly what the options are.

  • Thank you for your reply I really do appreciate it I will keep on searching and definitely use your info fantastic I have found you xxxxx

  • I agree with shaws that you need some T3 to replace some (or all) of your T4. The Pulse article is very useful as Pulse is a magazine especially for GPs, so they do take note of it. Dr Toft also says the same sort of thing in his little book "Understanding Thyroid Disorders", which is available in most chemists for about £5. He also says some fairly unhelpful things, so you have to pick and choose the bits to show to your GP :D xxx.

  • Thank u xxxx

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