I saw the GP yesterday about a lump in my neck which he thinks is my thyroid. It is larger on one side but also a smaller lump on the other. I first noticed it five months ago but ignored it as I decided it was just a fatty neck of old age. I am 56F. However recently I saw it was much bigger so went to GP. He has referred me for urgent scan and maybe biopsy, and bloods next week. When I swallow it sticks out a lot to the side. It has grown a lot in last five months.
20 months ago I had a blood test as I had neuropathy and wanted B12 tested. My B12 was low end of range (281) but 'normal' so GP said you're fine. Of course I thought stuff that and started supplements.
In this blood test 20 months ago my TSH was
0.33 (0.3-4.9)
I have no other thyroid data.
I have suffered insomnia and palpitations for years.
I have gritty eyes last two weeks.
No weight loss/gain
Heart rate and blood pressure normal.
The lump makes me cough, I can feel it when I swallow, but no pain. My voice is a bit hoarse.
I have been getting occasional bouts of fatigue and dizziness. But usually I feel okay.
Any advice on how to handle this is appreciated or thoughts on the situation appreciated. I suspect AI Graves and pernicious anemia. But there's no family history. I suspect I was always slightly hyperthyroid but no-one ever made connection.
Written by
Kilff
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A few points which might help. Extraordinarily unlikely to be Graves with a TSH in range (even at the bottom). And an awful lot of those who have Graves have several symptoms which together make a strong case.
Has your B12 risen by taking oral supplements? If it has risen substantially, you are less likely to have Pernicious Anaemia. Lots of people have reduced B12 absorption as we get older. And without any knowledge of your diet, very difficult to make any useful comments. But those who have a diet that doesn't have much B12 often see levels drop.
I think you need two things:
A proper thyroid assessment.
An ultrasound, MRI or whatever scan.
If you could manage it, a private blood test might help in understanding. NHS testing rarely includes Free T3, Thyroglobulin antibodies - and only sometimes includes Thyroid Peroxidase antibodies. If there is any possibility of Graves, then a TSH Receptor antibodies test (TRab) would be necessary.
Autoimmune thyroid disease can cause a goitre. As can iodine deficiency - but iodine discussions can go on at great length!
I had insomnia from low thyroid hormone levels - as have many others. And heart rate issues (speed and/or palpitations) can happen whether over or under on thyroid hormone.
You sound a bit like me. I'm 55F, I've had a goitre and felt rubbish since 2016. My TSH has been around 0.27/0.3 consistently since then. I had a benign multinodular goitre in 2016, scanned but no follow up. Was constantly told I was just fatigued post surgeries (5 x GA' over 18 months) and then that I was perimenopausal and as I was trying to avoid HRT I should just live with it
Nobody was bothered about my TSH as it was "in range". T4 was checked a couple of times since then but was always in range
I got much worse from Autumn 2023, elevated heart rate, poor sleep, anxiety, physically exhausted . Goitre increased in 2024 at the same time symptoms increased.
HRT helped for 6 weeks but really did show that there was an underlying condition.
NHS endo wouldn't accept my GP's referral as my TSH is "in range" so I'm obviously absolutely fine 🙄
I saw a private endo just over 2 weeks ago, I took my private blood results to him (Lola Elite). He listened and came up with exactly what I've been telling my GP, subclinical hyperactive thyroid which is making my symptomatic. He says we don't all fit in boxes (hallelujah!) and whilst many aren't symptomatic with subclinical hyperthyroidism many like me are.
I'm taking 5mg carbimazole on alternate days for a 6 week trial and tentatively, crossing my fingers, I think I am feeling less rubbish and my episodes of racing heartrate seem slightly improved. Its very early days but I'm encouraged so far.
He also advised me to get my vitamin D up to over 100 from the 55/60 on tests at the end of November.
I've had all my antibodies tested and none of mine are elevated. I'd definitely recommend getting then tested so you've got a starting point for what is going on.
Mine looks to be that the nodules are producing thyroid hormone.
If you look at my other posts and bio you'll see more of the history. I hope it helps you and good luck
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Multinodular Goitre benign
Goitre/TSH level
Do I really need a biopsy?!
Hashi's but no goitre!
