Not diagnosed but worried

I have been diagnosed with Hepatitis C but have other issues which I have been told are not a result of the virus. However I am very concerned I have autoimmune thyroiditis-mainly because of unexplained weight loss, a sudden b12 deficiency despite not changing my diet, palpitations, swollen face around the eye area, a constant weird feeling in my throat, cracked voice and oh yes, I can see my thyroid gland in my throat (plus loads of other symptoms I wont bore you guys with). My GP ordered TSH tests which came back 3.75 which I gather is normal and the endocrinologist I saw yesterday says there are no other tests available to test the thryoid and anyway he doesnt recognise any of the symptoms I have as relating to the thyroid gland. So I have ordered the TPO tests from CNS myself. But my question I guess is, is that normal? Is auto immune thyroiditis so unlikely or the tests so expensive that the doctors just wave people away like that. My GP actually laughed at me and the endo yesterday point blank said he couldnt help and had no idea what was wrong with me and to try a gastroenterologist (who I am already seeing for the Hep C and also has no idea what these symptoms could mean). Thanks for your advice

Helen

10 Replies

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  • Helen

    I have sent you a conversation

    Louise

    x

  • Hi helen.

    A normal TSH is 1. Many countries treat at 2 or 2.5. A tsh of over 4 maens you are at a greater risk of heart problems..... The endocrinologist obviosly doesn't know what he's doing, probably specialises in diabetes. check him out on www. drfosterhealth.co.uk.

    All your signs are of hypothyroidism. The thyroid antibody test will see if you have hashimotos disease which is very common.. And change the endo for a competent one. Kick up a fuss, list your signs and symptoms, there will be a check list, write to the doctor listing these and say that you would like a referal to an endo of your choice... as this one is not helping you.

    Read Dr Peatfields book, your thyroid and how to keep it healthy... and learn to laugh at the hapless endo when he spouts rubbish at you. If what he tells you is wrong, ask him for evidence.

    You're not mad or imagining it, just look at how others are treated...

    Nel.

  • Link to Dr P's Book here:

    thyroiduk.org.uk/tuk/pages/...

    xx

  • Hey Nel,

    Thanks for that. Its a real eye opener, I have spent hours researching both the Hep C and my symptoms and I have access to university libraries so I really thought I would be able to communicate with them on a level but all I could see was that I was sitting in front of a guy that really seemed to hate this bit of his job and really wished it was lunch. I gave him a typed list of my symptoms highlighting the ones that had calmed down a bit since I altered my diet and he said he didnt recognise any of those symptoms as relevant to thryoid problems.

    I sent my TPO tests back this morning and if the results come back positive I will ask for a referral to Addenbrookes - they seem to be a good standard of care.

    I think its outrageous that so many of these highly paid people are so disinterested and blase about other peoples health-what on earth are they doing that job for?

    Thanks for the tip about the book-I'll have a look later.

    Best wishes Nel

    Helen

  • Hi Helenph sorry that your feeling so bad,but these specialist don't always know everything!!my throat has been bad for 4 years my eyes feel terrible and my tongue feels as if it is swollen, but they are taking me off medication as the Endocrinologist has decided i'm on the casp of underactive thyroid problem!! he dose not want to know!! So chin up, don't give up keep fighting till you get the answers eh!! regards wakeham

  • Wakeham,

    The swollen tongue, sometimes with a pie crust edge, where it has rested against teeth is a classic hypo sign. It is caused by fluid retention.. What is your endo playing at? Suggest you write a letter to your doc, list your signs and symptoms and ask what he is going to do about getting you back to full health.

    What are your test results for TSH, free t4 and T3? Do you have thyroid antibodies (hashimotos).

    Is your specialist an expert in thyroid or is he a diabetes specialist who is playing at being a good all rounder? Check him and his specialism out on Drfosterhealth.co.uk. If he is a diabetes specialist, complain and demand a further referral.

    Nel

  • Just checked out the "endo" I saw last week and he's a chemical pathologist not an endocrinologist. I dont know what the difference is...I'm about to dig around and find out but I will be having words with my GP when I see him. I dont really care if I upset them any more-this lax attitude is totally unacceptable.

    Just a quick question though-does any one have a weird coppery/minty sensation in their oesophagus/mouth/tongue nearly all the time. I'm just trying to separate symptoms out really-I think I am probably insulin resistant because of the Hep C (I think the thyroid thing may be Hep C induced although not sure) and also food intolerances to many things-Vitamin C, grains,dairy? Just trying to gauge whats what really.

    Wakeham my advice to you would be get some knowledge-go in there knowing what you are talking about and be prepared to stand your ground if you have the facts to back up your argument.

    Thanks to you all for all the info

    Helen

  • Hi Helen your grain and dairy intolerances sound as if they could be caeliac disease. Ask to have it checked. Good luck.

  • Hi Helen

    I have hypothyroidism and take thyroxine 100mcgs but recently my symptoms have become more problematic and I am currently seeing my end on a regular basis having various blood tests and review of dose. When I feel most I'll I start with a sensation and strange burning/ metallic taste on my tongue and throat. I have always been convinced it's some sort of deficiency ( dr's don't seem to bother/ know!) recently I requested a vitamin d test and have discovered that I am depleted in vit D! II have now started to supplement - so will see if things improve.

    Alli

  • Hi Alli

    I used to have that burning sensation and that was a B12 deficiency so I would get that checked out if I were you. The sensation I have now is actually not that unpleasant but also not normal. I've been taking D3 for a while now and all the joint and muscle pains I had disappeared.

    Thanks for your input Joanna-I wanted to test for coeliacs and was even prepared to eat grains and dairy for a couple of weeks to have it done but the consultant said it was very unlikely. I sort of agree, I have always been able to eat anything and everything and my intolerances only started about 8 months ago and then it was everything almost at once, including foods without gluten and foods high in Vitamin C strangely enough. But I would like to have ruled it out all the same. It could be the Hep C virus I guess but I was thinking its possibly the thyroid problem but who knows.....

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