goiter?

Hello, I have a question about goiters and was hoping that someone out there might have some words of wisdom. I first suspected that I had hashimotos when I felt 2 distinct lumps in my neck. I had noticed that my neck was getting thicker, bit had just put it down to aging, then I could feel it and even my husband said he could see it so I knew I wasn't going mad. When I went to my GP he felt my neck and said he thought is was a cyst on the left side of my neck and he sent me for an ultrasound. Then I got my antibody tests back which showed positive but the verdict from the ultrasound was that my thyroid was normal with so signs of thyroiditis. I saw an endo who wouldn't even examine my neck and she said that 'the ultrasound shows everything up so there is no need', but I still feels these swellings in my neck. Has anyone else been sent away with this lack of diagnosis? My latest TSH is 4.9 (0.35-5.5), TPO 237 (>6) , TGab 70 (0-40). Thanks so much

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  • i had a goitre back in 2008 it went from approx 3-4cm to size of an egg in 4 weeks, it was removed 2 months later by which time i could hardly swallow, if i turned my head left it cut off my windpipe. The goitre was dealt with quickly, my troubles began after it was out, it has taken 6 years to get diagnosed as hypothyroid by which time i became seriously ill, housebound and yet my tsh was 4.9 and therefore in normal range!!. I still get food stuck in my throat and occasionally have trouble swallowing.

    if your tsh 4.9 they still consider that ok (i felt like i was dying at 4.9) i started to self medicate and my dr was so impressed with the improvement he then started to prescribe me levo.

    My experience has been one of constant struggle with my gp and the endo has been even worse! i spent 6 years on anti depressants, valium, very strong pain killers, gastric meds, betnovate steroid cream (eczema) plus others, all a complete waste of time as nothing worked, i just got worse and yet miraculously once i started on NDT my symptoms started to go and i stopped taking all the other drugs.

    I wish i knew then what i learned this year, i would have saved myself years of misery.

    I now feel deeply distrustful towards the medical profession if im honest and will always do my own research and make my decisions ref my health.

    If you KNOW there is something wrong then be persistent and if they say nothing is wrong ask for explanations and 2nd opinions. Its your health and body and you may have to fight for it, dont make my mistake staying ill for fear of being pushy xxxx

  • Hi Binkie, thanks for your reply. It's good to have as much information as possible! I can feel the swelling in my neck, but I agree with you that it seems sometimes as if doctors don't want to find anything wrong.

  • I had a goiter , it gradually grew very big for ten years, I kept asking my Gps ,but they put it down to the weight gain. Eventually I saw an ENT consultant as my snoring was so bad my husband wasn't getting any sleep. The consultant took one look at my neck, did a biopsy and sent me for a scan which showed lots of nodules on a Goiter. I never had an anti bodies test. Two weeks later I had my Thyroid removed, they said the goiter was very big. I am sure others with more knowledge than me will give you advice, but with a TSH of 4.9 I would imagine you are feeling quite poorly.

  • Thanks Beverleyb, your reply is reassuring as it makes me think that i'm not going mad after all! I will keep an eye on my neck- i'm sure that it's a goiter. Hopefully the doctor will look at it again and send me for another ultrasound when or if it gets bigger! You must have gotten a fright when they said that you'd need your thyroid removed. I'm getting heavier and heavier, even though i'm a vegan! Sure it's all down to my thyroid, but it's such a slow process that it can get dispiriting at times. Thanks for your kind reply.

  • I agree with Binkie, be persistent and keep fighting for your health, I was so ill for the ten years before I had my thyroid removed, then another 7 years of being on thyroxine, which didn't suit me at all as I wasn't converting T4 . I found this site, all the admin and other members are so knowledgable ,they give great advice, I found a private endo, and now with the right medication, I feel the best I have in almost 20 years! I still haven't lost the weight,but I feel good and to me that is so important to have an almost normal life. keep fighting!

    regards Bev.

  • If you are vegan....do you take B12, have you had levels B12 tested?

    Vegan diet often does not get enough B12.

    You need B12 for good uptake of thyroid

    If your GP won't do blood tests - You can get private blood tests via Blue horizon (see Thyroid Uk)

    "Thyroid plus 10" will give full sweep of all relevant levels

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