Help, GP insists my thyroid level is normal, managed to get a referral to an endo, what do I need to ask?

Last spring I decided to get fit, all went well until I came down with oedema in both legs, hands and around my eyes. The GPs sent me for tests and still cant find anything! On research I realised I had lost the outside of both eyebrows in the past year, my hair is thinning, I am constantly tired. Sometimes my arms ache just hanging out laundry.

When the oedema is at its worse I struggle to walk to the end of the street. All I get from the GP is - "Lose weight, and its caused by heat or staying in the same position too long" (Symptoms eased a little by the end of summer - but flared up again before Christmas)

I have grudgingly been promised a referral to the hospital, but am worrying about what is going to happen, the GPs are so insistent I am wrong. They are not offering any solution other than weight loss, my diet is fairly good, very few fried foods, plenty of veg no sweets.

I cant exercise without pain now. One of the GPs suggested yoga as even aqua-aerobics caused pain!

Has anyone else had the same issues? Any ideas would be good I feel very alone.

7 Replies

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  • Hi Julie,

    First thing is get a copy of your test results and see what they are. Some docs will say you are normal even if you're patently are not and the tests confirm it. The doc has to give you the results by law, so go and see the receptionist tommorow and ask for any test results which have measured TSH and /or free t4.

    The UK has an abnormally high reference range and frequently does not treat until people are in a terrible state.

    Nel.

  • Sorry to hear this, unfortunately it is what happened to me and hundreds of others too.

    First of all have you any close family members with thyroid disease or other autoimmune diseases like type 1 diabetes, ceoliac ??

    When you have your blood tested have it tested between 8-9am I take a blood form to my local hospital as they open at 8am. Your TSH is at it's highest then.

    Also ask your GP to test your thyroid antibodies, if you have positive antibodies then this confirms that you have autoimmune hypothyroidism, this was key in getting myself diagnosed.

    Many of us also have a low B12 level, vit D, ferritin and folate so it is good to have these tested.

    When you speak to your doc don't mention the word internet as it seems to wind them up that you are trying to find out what is wrong.

    I was referred to an Endocrinologist (privately) and he was even worse than the GP, told me I was absolutely fine with a TSH of 7.9 (in USA, Germany and other countries they diagnosed hypo when tsh goes above 3)

    Let us know your results when you get them.

  • Your never alone on here , it sound like you have all the symptoms so get your test result and stick by your guns that you want to see a endo , hope its not your thyroid and maybe your iron is low or something easy to help you with , heres to good news for you .

    Regards Jan x

  • Just to add to the excellent advice already given, please make sure you get the RANGES in which you were tested as these vary throughout the country and give a much better idea of what the results actually mean.

    Louise

    xxxx

  • Its crazy, reading these comments it feel less like a consultation, more like I have to prepare myself for war!

    I did seem to upset the GPs when I went in clutching an article. But the fact is I know that they are General Practitioners facing a huge range of people, I have only myself to research.

    The reading the GP gave me for my last blood test was 3.75 (I have no real idea what this means except that it is below the current range).

    I told her that my mother had a goitre when I was young I remember the scar - She only said that tended to be an over-active rather than under active thyroid. I thought that a family history of thyroid problems was relevant.

    I have had my iron levels checked also, and they are within the normal ranges.

    Anyway - I haven't yet received the appointment, but thanks for the advice I will post the results. Hopefully I get lucky, Carlisle hospital doesn't seem to have been rated yet.

  • 3.75!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I bet this is your TSH, which should be 1.

    In Germany, france, belgium, sweden and America you would be classed as hypothyroid and treated. In this country you can be left to get in a real mess before you are treated, we have the highest reference range in the world.

    Demand a test to see if you have thyroid antibodies (hashimotos) and list all your hypo symptoms, there is a checklist available..... Write to the doc listing your symptoms and list family members with auto immune problems. - ask for a' trial' of levothyroxine to see if it alleviates your symptoms....

    You can check the endo's and hospitals on drfosterhealth.com. See if you can find one who specialises in thyroid, not diabetes.

    Nel

  • Thank you - will do

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