Has anyone with Graves disease being treated with carbimazole had their thyroid glands suddenly start swelling and being painful to go with it?
Husband is being sent for an emergency scan (appt for 6th june) as his glands are now persistently swollen and painful, despite levels being 'good' (I say it like that as they're obviously not right for him but not being listened too)
When he was admitted last year a scan showed his glands were lobulated, no mention of any nodules. No other scans have been done since so no idea if lobulated is normal for an untreated hyperthyroid or if they should have followed up. Anyone with any insight? Experience of similar?
He's getting so fed up with being tired all the time for no apparent reason, being refused blood tests to check vitamins etc and just told that his levels are good so the tiredness shouldn't be there!
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Terrihaynes21
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Then like thousands of UK patients if he wants full Thyroid and vitamin testing he needs to get private blood tests
The NHS will rarely offer full testing
How much carbimazole is he taking.
When were thyroid levels last tested
Can you add results and ranges
Has he had TSI or TRab antibodies tested to definitely confirm Graves
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Low vitamins are very common with Graves and Hashimoto's
Has he tried strictly gluten free diet?
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
He had a blood test a couple of weeks ago, I can't find those results however they were pretty much the same as March which was--
TSH- 1.73 (0.4-4.2)
FT4- 16.3 (12-22)
Graves disease has been confirmed.
Never had Gluten being mentioned so not something we've gone to try. Would that make any difference to the sudden painful thyroid swelling?
We need to ask for a second opinion. The consultant he sees is not listed under any of our local NHS trusts endocrinology departments. So really, we don't have a blinking clue what he actually specialises in!
The painful thyroid gland swelling, giving him the feeling of a sore throat, making it harder to swallow and sometimes breathe (he's starting to have asthma attacks, which he hasn't had for a really fair while now) obviously needs sorting, yet this supposed specialist seems to think the thyroid swelling wouldn't cause those problems.
I’m a bit under the weather today so I will make this briefer than I normally would - I am so sorry about your husband- the same thing happened to me. My goiter was crushing my windpipe and vocal cords and I also have Graves. I needed a TT and I am 15 weeks post op.
He needs the following:
Fine needle biopsy with guided ultrasound for all nodules
Nuclear testing to determine radioactive uptake
Separate Ultrasound of entire neck
CT scan to determine if goiter is crushing vocal cords and windpipe
Examination of vocal cords with guided instrumentation to determine if there is any damage.
Challenge breathing test to determine if asthma or not.
You don’t post complete bloods but someone else will ask you for that.
I was on Tapazole for 2 years until i became resistant to it.
I am not saying your husband needs surgery. He needs detailed testing to determine his situation and where you go from there.
Sorry for this very brief answer but I hope it helps. Wishing you all the best for your husband.
Thank you for your reply. He was diagnosed with Asthma back in 2003 I think it was so that's one test already sorted.
We don't know if he has nodules in his thyroid currently so the ultrasound on Thursday will give us more details on that.
It's strange that his thyroid glands seem to be enlarging to the sides of his neck far more than protruding outwards at the front of his neck. They are definitely swollen and more visible though, just seem to be doing something a little out of the "norm".
I shall keep a note of those other tests, thank you.
I hope you are feeling stronger soon. Can't imagine how much a thyroidectomy knocks you off your feet, must be a considerable operation.
A goitre can develop in any direction from the thyroid gland, and even separately from it, in rare cases where there is migrated thyroid tissue, although protruding to the front of the throat is more common. This poor workhouse lady has her's predominantly to the right. gettyimages.co.uk/detail/ne...
Re lobules, my albeit limited understanding is that the thyroid tissue itself consists of a lot of small individual lobules enclosed in thin layers of connective tissue. These lobules contain a great number of small vesicles (sacs) aka follicles, which store thyroid hormones in the firm of little droplets. So having thyroid lobules is normal physiology; but whether the number or form of those seen on your husband's scan were deemed normal or otherwise - I think jagged lobules might raise a warning - is something only his specialist can tell him.
Some additional information - jagged or lobulated borders should be examined ASAP - and an endocrinologist is a must - run, don't walk to find one - as one other forum member has pointed out. To follow up on your response to me below - the challenge test should be repeated to discover whether or not your husband's asthma has advanced or whether this is a symptom of the swelling of the thyroid. It is not to confirm the asthma. Whether or not your husband has nodules, the thyroid itself must be biopsied.
When there is presence of autoimmune thyroid disease like Graves, by the way, swelling of the neck is common - this also happened to me as well prior to my surgery, and this can happen in any direction. Swelling may also come from the lymph nodes, which are adjacent to the thyroid. The purpose of the testing I mentioned is to rule out everything before proceeding.
Also, you should know that anything thyroid usually moves very slowly - so do not be rushed or pressured into making any decisions about therapy after all your testing is done unless there is something found that is considered an emergency.
Wishing you all the best and hope this is helpful!
Thanks for your good wishes. TT is a very big operation. You should know that 98% of all thyroid nodules are benign - so wait for tests before you become too worried. All the best.
Hi..I had a large goitre it was at the side of my neck, I wonder if that's why GPs never bothered to check or treat me I had horrible symptoms for years and didn't have the information then to research....An ENT consultant noticed my goitre when I went to see him as I was snoring so much..within 2 weeks I had at TT. I hope your husband gets some answers with his next scan...
You can find out about the present Consultant and his qualifications and specialities through the Hospital ...phone the administrator or Secretary .....or by simply Googling him .
If the Consultant he’s seeing isn’t an Endocrinologist then you need to find one ....or go PRIVATE and see one quickly .... a lot faster than NHS .
If his Thyroid Gland 🦋 is so swollen he needs treatment and that can only be accessed by a Professional.
The best of Luck with this and I hope your husband gets well again soon .
I cannot find him on any trust sites for endo teams. All I've found is his Facebook profile and all I can see is where he trained (abroad) but not what in exactly. I need to get my husband seeing someone else. If he was endo team, surely he'd be listed on a department page somewhere
I think it was the TRaB but it's all been a bit hush on that front but everything we receive that's also been sent to gp says confirmed Graves disease.
Yes!!! Same story! Got diagnosed Graves and started on carbimazole now around 3 weeks back and after 4 or 5 days of being on it I started to feel goitre. I know the feeling of it as I also have hashimotos and when that was diagnosed it was due to a goitre but once I started on thyroxine it went away, now I’m dealing with hyper and Graves. I did the uptake test and they did say there was signs of a goitre but I definitely didn’t feel anything like it is now until I started the Carbimazole.
I’m also curious as to what the connection is but unfortunately it’s been a very busy month for my family and as bad as it sounds I just haven’t had the time to see an endo and enquire about it.
So on looking on the GMC website, the oh so lovely Dr <redacted> isn't even registered on the specialists list or seemingly under a base hospital. Just registered and licensed to practise medicine. But have found a consultant at another hospital that specialises in thyroid disease. Seems to have a very good list of things he supports/teaches as well, thyroid related.
Does anyone here have the ability to explain to me in simple terms, how to request a change in Doctor? All I can make sense out of anything I read is if we approached the GP he'd put it forward as a second opinion. But I think an actual transfer would be a much better move tbh.
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