After a call back from GP I've got an appointment in the morning - please help with the following points - I've got a fight on my hands!

Despite me feeling more hypo and ill than ever and having just had an interpretation of "you're fine and in the range, in fact if anything your TSH suggests you're over not under" ... I need counter arguments at the ready - l desperately need a change of meds, but the tone on the phone suggests it's already a fait a compli ...

T3 4.3 (3.5-6.5)

T4 13.2 (11-22.6)

TSH 0.14 (0.2-4.0)

(History - had RAI for hyper caused by graves a number of years ago)

I need to be armed with the responses that will help me not to be fobbed off ๐Ÿ˜•

Thanks in advance

14 Replies

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  • Icescream99,

    Dr. Toft (ex-president of the BTA) wrote in an article in Pulse Magazine that some patients need TSH as low as 0.05 in order to have high T4 for conversion to T3. As long as FT3 remains within range it doesn't matter that TSH is suppressed. Extracts from the article are in Treatment Options in thyroiduk.org.uk/tuk/about_...

    Your FT4 and FT3 are low in range so you are not over medicated despite TSH being low.

  • Write down the worst symptoms and ask one by one: "Is this symptom fine and normal?" -- "Is this symptom fine and normal? -- "Is this symptom fine and normal? etc.

    And concluding: "Why are only the bloods numbers treated, not the patient?"

  • I'll throw that one in if it comes to it ๐Ÿ’ช๐Ÿป cheers Elgiii ๐Ÿ˜Ž

  • Can you take a supportive friend or family member along with you......it's harder then for them to bundle you out.

    Have a (short) list of requests/questions

    Ask then to check you levels vitamin D, b12, folate and ferritin. These need to be at good levels for our thyroid hormones to work

    Gluten may be hindering your recovery .......At least this is something you can consider and control yourself, regardless of GP

    chriskresser.com/the-gluten...

    If all else fails you can get your own blood tests done through Thyroid Uk

  • after graves disease most patients can not exist on so called normal levels because their body has been sensitised to such high levels After RAI this is even more common

    my husband was in this boat after surgury for graves but he was lucky and had a prof who remdmbered very old swedish research which said that after graves your freect4 abpnd free t3 must be right at the top of their ranges and tsh will be zero

  • Thank you all for help - I saw my GP this morning

    ...the outcome is a referral back to endocrinology and a slight increase of thyroxine (from 75 up to 100) but this is for a month only, she said she wasn't happy to give it me as my 'TSH is suppressed' and if it goes any lower my does will be reduced back down.

    - I took my notes, tried to present my points/argument, and some photos showing the difference in my appearance over just a few months. It had no impact on her thinking. She said that no way would she prescribe T3 and a big fat no (which I expected anyway to natural dedicated thyroid)

    She finally agreed to test my vitamin D levels and antibodies, but generally tut tutted at my list and said I don't know where you're getting this advice from - it's wrong :-) Oh, and she told me it's against NICE guidelines for a GP to test T3 (sigh)

    I'll see what comes of endo, and after that if no joy I'll consider alternative (more expensive, and I guess riskier options)

    I got the distinct impression that she wanted me out of the door and off her hands as fast as possible - looks like I'll be saving up for my own blood tests from here on, otherwise my well-ness will be measured by my TSH and a system that seems to want me in the range, but of course at the bottom of it!

    I definitely know now no that there is no way I could say I was self medicating with T3 (if that's the route I eventually choose to take) ..probably strike me off the books, it's not care - it's defensive practice these days (I get why in this culture, but we're all individuals, and I want someone to take a leap of faith with me!)

    Is this the big society then? Help one another & pay for yourself Lol? ...wonder if there's any mileage in applying to the lottery for funding to help us with our blood test costs? ..I have to try to keep smiling or I'll cry again :-)

    Thanks again

  • Am so sorry ti hear your GP was so resistant. At least you get a referral to an endocrinologist. Make sure it is one if your choosing! Ask Louise Warvil for the list of thyroid friendly docs....some of them are NHS some are private.

    I went this route a few years back and found GPs much happier to prescribe if someone else was recommending. Eventually I moved to a ndt and for a while off NHS scripts but eventually got a surgery ti take me on and prescribe. So take heart......slowly slowly catchymonkey!! Xx ๐Ÿ˜Š๐Ÿ˜Š

  • The warmth and support I've recieved from members here has made me feel like I'm not imagining symptoms, or going mad, or am out on a limb on my own - thank you all :-) I'm going to keep learning from the wealth of experience and help on here until I get where I need to be x

  • Thanks for your words of support waveylines ...how do I get in touch with Louise Warvil?

  • Contact details can be found in the profile text at the top of the page here :

    healthunlocked.com/user/lou...

  • Cheers :-)

  • You can message her on here if you search for her profile. Alternatively you can ring Thyroid Uk and do it that way too ๐Ÿ˜Š

  • Ooops see humanbeans sorted it for you.... ๐Ÿ˜Š๐Ÿ˜Š

  • Thanks both of you :-)

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