Hi, I developed a goitre about 12 years ago. I had biopsies and scans over a period of 6 years. I was told I was borderline Hasimotos and would need medication as it would all get worse.
I didn't have any symptoms of hasimotos and the goitre stayed stable, so there nothing else to do as I did not want medication.
six years later and the goitre has recently got a lot bigger. I am concerned but it's not effecting my swallowing or voice.
I would like to tackle this by finding a functional medical practitioner that specializes in the thyroid.
Does anybody here know of someone in the UK. thanks
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plee123
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What do you mean by 'symptoms of Hashimoto's'? The symptoms you would feel would be symptoms of hypothyroidism, and there are over 300 of those. Because Hashi's is an autoimmune disease where the immune system slowly destroys the thyroid. So, yes, it will just get worse, there is no way to stop it. And, the 'medication' on offer is not really 'medication' - i.e. drugs - at all. It is thyroid hormone replacement, and it is not to treat the Hashi's itself, it is to replace the hormone that your thyroid can no-longer make. Not even a functional doctor can cure Hashi's, I'm afraid.
I meant symptoms of hypothyroidism - like tiredness, dry skin, loss of hair etc. I had the tests done 12 years ago - so I wanted to find someone who will look at my whole health and who will test to see what I am lacking nutrient wise. Or find out if my goitre is being triggered by something. I believe it started through a period of extreme stress. When I am under stress now - it seems to get more inflamed. I do not understand enough about what is happening in my body and I want to be able to ask questions which are not dismissed by a specialist which is what happened 12 years ago.
Yes, specialists are very good at dismissing questions! Mainly because they don't have the answers themselves. No doctors know much about thyroid, you'd be far better off asking your questions on here. We, at least, have spent years researching thyroid, which no doctor I've ever met has done.
It is the Hashi's itself that is causing your goitre - i.e. swollen thyroid. But, it's virtually impossible to say what triggered the Hashi's. There are so many possible causes.
What you need now is full thyroid testing, and it will be very difficult to get that from any doctor. You need:
TSH
FT4
FT3
vit D
vit B12
folate
ferritin
Your GP could do most of those for you, but doubtful if they'd do all of them - unlikely they'd to FT3. But, I would advise you to get them done privately before seeing any more doctors, so that you can ask questions about them on here, and thereby understand what you're talking about when you do see a doctor.
I saw an endocrinologist at liverpool womens hospital who was dismissive at first about my questions as I’d been told by my gp the only tests they did were tsh and t4. I had read on here a lot about what’s been discussed and got the endo to test for t3 ferratin and the others that you say. And it came back I hadn’t got hypoparathyroidism which is what I thought I’d got due to my symptoms and the t4 and tsh being very unstable and rocketing with high numbers almost hitting 38 in one of the tests. And was diagnosed with Hashimoto’s thyroiditis which the previous endo local told me wasn’t the case I just had got an underactive thyroid and that was it.
It depends on the country where you are as some nhs trusts aren’t taking on new patients out of their immediate area . I’ve had to fight to get to see an endocrinologist who has helped with my symptoms.
They have an email address also (patient’s one) where you can email the nurses who specialise in endocrine issues which you can email and they help.
Good luck but tell your gp you’ve been reading up on health forums and you’d like the following tests done and take it from there. Good luck 🤞
I don't really think it's a good idea to tell a doctor you've been 'reading up on health forums', they tend not to like that. It's very rare for a doctor to like an informed patient! And, let's face it, the majority of forums are rubbish! However, you could say that you'd been reading on the TUK site/forum, because that is recommended by the NHS.
Hi, apart from the goitre I do not I think have any other symptoms. The tests were done 12 years ago, and I want to find someone who will do all of these tests now - and who will help me to make decisions about my health.
I would look to retest your thyroid bloods and key vitamins before seeking advice from a specialist. Once you have the results, post on the forum in a new post for further advice.
Hi Plee123. I had a goiter and it got large and they removed half my thyroid because it was "suspicious" for cancer according to the needle biopsy. I regret it and would have liked to do what you are doing. Mine was benign and not bothering me and now I am hypothyroid, so, yes, I hope you continue to research and do what is right for you and don't be pressured needlessly like I was
hi plee123 I too have a goiter and have done for a few years…. I have no symptoms and feel totally normal I have regular blood tests and ultra sounds and as much as my endo ‘offers’ rai or medications I politely decline and probs will do until I feel I need it….this site has been an absolute gold mine of info and had I not discovered it would probably have succumbed!
I had a goitre removed four years ago and I too regret it. It has caused vocal cord damage and my muscles don’t work together in my throat anymore causing voice dysphonia. I can no longer use my voice properly, I take natural dissected hormones as the half of my thyroid that was left stopped working. I didn’t have any of these issues when I just had the goitre and yes mine grew with the stress I was under at the time 🙈
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