I had a scan a couple of weeks ago and not had the official results from my GP yet. However, the doctor doing the scan said my thyroid had shrunk, it was much smaller than it should be.
Is this to be expected? Sorry for my ignorance. You see my neck is VERY puffy and swollen and the Endo I had to see 2 years ago due to an emergency hospital admission said I had Hashimoto's just by looking at me ... the scan shows no goitre or nodules ... yet my neck horribly puffy, so much so I am really self-conscious about it.
I had a family wedding in the summer and it shows terribly on the photos.
Can you good people enlighten me further?
BB
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bestbuddy
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Hi I have been taking thyroxine for 15 years but I think I am becoming more unstable and having more and more flares. My neck hurts, my neck is very puffy (I have chronic joint problems and have UCTD ... On the lupus spectrum).
By the time antibodies were checked a number of years ago I had been 100 per cent gluten free and GP treats me as coeliac; consequently they could not 'prove' it was hashimotos
Well, the life of your thyroid, anyway. I suspect they mean that theresulting hhypothyroidism is for life. But, when there's no gland left, the antibodies reduce to normal levels.
But that a why I am asking. My levels have always been 'normal' as far as I know and being totally gluten free my antibodies would probably not be detectable anyway, hence the reason why ask because I am still having flares. It's all so complicated!
There's no guarantee that gluten-free will make your antibodies undetectable. It doesn't work for everybody. And the only way you would know is to get them tested.
Hi bestbuddy sorry to butt in . But When U say your antibodies are normal . Do you mean thyroid associated antibodies or the celiac associated antibodies . I know gluten reduction/elimination can help reduce antibody production of the former . But its the reduction in the latter that is directly correlated and expected
Hi I was diagnosed hypo about 15 years ago so was never told about any thyroid antibodies.
I was tested for coeliac 7 years after my GP suggested I eliminate gluten permanently. 7 years later when I went for proper coeliac testing there were no antibodies. So I am symptomatic of coeliac without the antibodies. My GP treats me as such and I get bread on prescription.
When I spoke to a dietician she said my gut would have healed in the 7 years since I began to completely eliminate gluten to the time I was tested .... so no damage would show. I have been completely GF for almost the same time as hypo. Happened more or less the same time.
The consultant asked my GP to never ask me to reintroduce gluten into my diet again. I am so unwell with even a minute amount.
I paid for a private scan when antibody test showed I had TPO's. I felt as though my throat was swollen, there appeared to be a slight swelling, doc said there was nothing and the scan showed my thyroid was very shrunken. I think the tpo's and inflammation lead to the swelling of surrounding tissue, maybe like oedema round your ankles, you can't feel any lumps. I can't bear anything too tight near the front of my neck.
I would say if you are not on thyroid meds you should be. Have you had any thyroid tests?
Maybe it's a case of "barking up wrong tree"! Maybe you should ask to be referred to an ENT consultant? Maybe it's nothing to do with thyroid. Just a suggestion.
I think your previous suggestion was most likely to be correct as I have extra fluid on the backs of my hands and ankles too as well as my neck. The trouble is, the GP says my TSH is now so low she can't risk increasing my thyroxine anymore. I take 100mcg / 75 alternate days
But the important thing is what is your TSH level and even more important what is T4 and T3 reading?
Most docs only want to keep patient in range. I had a battle to increase my levo because my TSH was well over one (1.2) and I was feeling awful but my T4 and T3 are always low in the range. After a very slight increase,12.5mcg, my TSH went down to 0.03 and I was told to go back to previous dose, but my T4 and T3 were still low in range so I am not overmedicated.
I am not reducing my dose in spite of threats about osteoporosis and heart attacks.
I totally agree but when I was on 100 mcg daily I had a horrendous time. I had palpitations so bad I couldn't sleep and was revved up like I was in speed, tearful, shaking, breathless etc. I believe I was in a hashi flare but my GP thinks it was slightly too much thyroxine that pushed me hyper. My TSH reading was 0.001 though my T4 was only 21 (as usual no t3 that I know of).
I would get a private test to see what T3 reading is, then you have the full picture. The lack of T4 and T3 testing by NHS explains why so many people with thyroid probs remain ill.
Hope you got t3 done in end . If not heres how . From bitter experience lol. Lab gets request . Lab ignores t3 part of request . Its policy unless they deem it necessary even when my consultant typed out reasons on her request form . You ring GP receptionist for lab result in day or two or have appointment made ahead with GP ready even better . Either way GP then rings lab to ask for t3 test( on blood that is kept in lab for 5 days or so after initial tests ) and its "of course no problem .why didn't you say . " lol
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