Hi everyone, took myself to A&E last night as lumps / swellings in neck and around the clavical were getting more sore , and was finding it hard to swallow and talk . After examination and my partner explaining my symptoms to the A&E doctor , he came to the conclusion that it was all down to a flare up of my autoimmune disorder and lymph nodes and that it could be related to the peturity gland / hyperthalmus playing up. We told him we were still waiting for an urgent referral to see the respiratory team and had heard nothing in over 5 weeks now , he looked into this for us and saw the referral put in by my GP, he also saw that as I had had previous ultrasound scans done and nothing had been found on them , the appointment was deemed as not to be urgent , but an appointment would be sent out in due course . I have full respect for the A&E doctor as once he was told I have graves disease, he didn't look at me or treat me like I had the plague or it was all in my mind , he took the time to listen to me and listen to our concerns , he took the time to explain certain aspects of what was going on with my body , though it wasn't his field of medical knowledge, but he had seen first hand and treated other people with very similar symptoms , the only thing that baffled him slightly was why it was only presenting on the left side of neck and not anywhere else . But though he's not a specialist in this field , he does know everyone presents differently though there are some uninformative symptoms , but he did say that this needs definate further investigation by the specialists .
If it is the pituitary / hyperthalmus playing up , is there anything I could be doing in the meantime to try and help myself please ☺
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Sweetpea1157
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If your Graves' has taken off again (ok, hopefully not - but on the other hand, better perhaps a problem you know than something else entirely !), perhaps this is causing your throat issues.
Elevated thyroid levels can lead to a swollen thyroid and a voice which disappears mid-sentence (I have that T-shirt !)
Hi Valerian, had thyroid blood check a few weeks ago , only thing that was not really within range was B12, it was miles over , am doing another test in next couple of weeks , have been going through this for some time now , and kept getting told basically it's all in my head , everything's fine, but now know it's not in my head , and everything definitely not fine , hoping I can find a way forward from this with the help from the good people on this forum .
If you don't mind me asking , are you still suffering from this aswell ?? And do you have any suggestions and advice please ☺
My Graves' is still active, although currently my thyroid levels are under control...but I haven't managed to come off anti-thyroids yet.
My throat/voice problems were better within a few months of my starting anti-thyroids, and the swelling came down at around the same time. For some months afterwards, if I got stressed, I would find myself stroling my thyroid, but I think this may have been an automatic response picked up while I was at my worst.
Hi Valerian, thank you for getting back to me. I have been suffering with my thyroid and graves problems for 30yrs or more , had a flare up a few years ago but it was no where near as severe as this flare up , and I never got probs with my voice or the lumps and swelling until now , but this has been going on since last year and I hope and pray that at last I'm starting to find a way forward with this . Even though I've been suffering for years with my thyroid , it's only recent that myself and my partner are beginning to understand a little as to what is going on with my body , but things still go over our heads . Thanks to the people on this forum it is slowly becoming more understandable . Sorry to sound nieve , but what anti thyroid meds are you on at moment , is that the levothyroxine and T3 etc ?? ☺
Hi Valarian , i was on that myself until I was given RAI , but again , recently , discovered that the thyroid was not totally destroyed with that treatment as they started me on levo too quickly afterwards , but will talk to the specialist when I eventually get an appointment to see one .
Hi waveylines, thankyou for getting back to me, have already been back to gp , unfortunately they said appointment with respiratory specialist could not be fast tracked any further, so am having to wait for appointment . Hopefully that won't be too long ☺
I think it is unlikely that the pituitary and hypothalamus can be seen very well on an ultrasound scan. They are in the brain, they are not directly next to or in the thyroid from a physical anatomy point of view. I've had mine scanned and it was done with an MRI scan, not an ultrasound. A healthy pituitary is roughly the size of a pea. The hypothalamus is a bit bigger but still small. Blood tests are used to test how well the pituitary and hypothalamus are functioning. MRI scans are usually only used on the pituitary and/or hypothalamus when there is suspicion of a disease or a tumour.
I'm confused about why you've been given a referral to the respiratory team. Surely if it is known that you have Graves's Disease and/or a goitre and/or nodules and/or some other thyroid problem then you should be seen by an endocrinologist, not a doctor from respiratory medicine? Or have I misunderstood something?
I'm also wondering what the ultrasound scans were used for? What was being scanned? Your lungs or your thyroid?
Hi humanbean, thanks for getting back to me , the peturity gland and hyperthalmus have not been scanned as of yet , I'm not sure what is going on to be honest , I can only relay what I'm told by docs , he said the lumps and swellings in the left of neck were the lymph nodes being inflamed , when I told him I had graves disease, he said that makes what he is seeing and feeling along with my symptoms , sense , but unfortunately he was not trained up in that field but had seen other cases with very similar symptoms to mine and he felt it was down to the peturity / hyperthalmus playing up and that it needed definate further investigation asap . The reason I've been refered to respiratory is because for the last 3 months I've been suffering from a lump in the front of my chest and on and just below my left clavical , it has slowly been increasing in size , when it is really bad it pertrudes from my upper chest around 2-3 cm and is about 3 inches in circumference, this was requested by the gp after he had plainly seen and felt the lump , because of where it is situated, thats why it has been refered to respiratory. The ultrasounds I have had done were for the lumps and swellings in left side of neck, and they were all that were scanned , also saw ent specialist who put a camera up my nose and down my throat , both the scan operator and ENT specialist at that time ( around March beginning April this year ) said they couldn't see anything , but it was all clearly visible to the naked eye , and each time I asked if it was anything to do with my graves , i was abruptly told NO , you're fine . Around 3 - 4 days after camera episode, unfortunately I ended up having a mini stroke caused by a carotid artery dissection along with horner's syndrome, and all on left side of neck where the lumps and swellings are . Now obviously , I've been worrying myself senseless with all that has been going on as you would see from my previous posts , i told gp of my concerns , he said I'm probably needing to speak to someone about this , like a councillor, i said no , a councillor is not going to be able to fix my body , i now this morning received a letter from psychiatrist telling me to call to make an appointment to see them , i feel very angry and upset with this , im not imagining all this and I'm not depressed , im just genuinely very worried .
Sorry this has been a long reply but I hope it made a clearer picture and thankyou for taking the time to read my post and getting back to me ☺
If you ever have lumps or bumps or rashes or anything else visible that you want a doctor to see, take plenty of pictures of them, in good light and at various angles. Keep the good clear ones, and delete the ones that don't come out well. It makes it quicker to find the ones which show what you want the doctor to see.
Otherwise, as you've discovered, doctors simply won't take you seriously. In my experience they take it for granted that patients, particularly female ones, lie about everything.
Regarding the psychiatrist, if that happened to me I would be as annoyed as you are! I'm not sure what your best approach would be, so take this with a pinch of salt. You could ask for a telephone appointment with the GP who suggested a councillor and ask him why he referred you to a psychiatrist when you said you didn't want to see anyone. It is up to you whether you attend the appointment, but there is a risk that seeing a psychiatrist or therapist is the NHS way of getting you out of there hair. That's why the pictures are so important. If you decide not to attend the appointment you should cancel it as soon as possible so that the appointment can be given to someone else.
Hi humanbean , thanks for getting back to me , have spoken to gp and told him that I have cancelled the appointment with psychiatrist , and asked him why he had done that , against my wishes , because of everything that has been going on with my body and the fact I had asked him if it was anything to do with my graves , at a meeting with his colleagues, they felt I was being irrational, and all my symptoms were nothing to do with my thyroid , even though he had physically seen all the lumps and swelling , hence the appointment with the psychiatrist. I am now at the point of completely changing gp's and the surgery. Thankyou for getting back to me , the photos were a good idea , will do that for future reference. Hopefully everything that is going on will get sorted out so I can get my life back ☺
If you've had RAI, presumably you now have no thyroid and are taking thyroid hormone replacement? Or have I missed something there? If that is the case, then the pituitary and/or hypothalamus have nothing to do with anything. Did you tell the A&E doctor you'd had RAI?
Hi greygoose , thankyou for getting back to me, as im at wits end here , we did tell doc that , but also that according to a respected private endo , i still have part of the thyroid still very much active , as I was started on levothyroxine too quickly after RAI , Which he had felt on examination , unfortunately he has now retired , so am unable to approach him with latest developments . Still waiting for appointment with hospital , dont know what to do in the meantime while waiting , the symptoms seem to be getting worse as the days are progressing, as said , I am at wits end , hope you can help 😯😦
OK, so you still have some thyroid left - I don't know the ins and outs of how RAI works, so I don't know if starting on levo too soon is a valid explanation, but it sounds a bit suspect to me. Surely how much of the thyroid is destroyed depends on the strength of the RAI, no? Anyway, you're taking thyroid hormone replacement, so I still don't see what the pituitary and/or hypothalamus could have to do with it. Did he say why he suspected them?
I've briefly looked through your past posts but don't have time to read them all, so I'm still a bit sketchy on your details. I presume you had RAI for Grave's? And that's why the doctor thought it might have something to do with your AI condition? Given your recent blood test results, I find that rather suspect, too. I have the impression he was frantically trying to remember all he'd 'learnt' about thyroid in med school, and just throwing bits at you to see if they stuck!
But, why do you think these lumps and bumps have anything to do with thyroid, anyway? Have they been xrayed? Scanned? Biopsied? Lymph nodes, possibly. But have you had any sort of examination for that? I don't understand why your doctor is referring you to a 'breathing team', either. Do these lumps restrict your breathing?
Personally, I would suspect that your low FT3 could have something to do with any symptoms you have. It wasn't even mid-range last test you had. Have you tried raising it since then? Have you tried splitting the dose?
If the lumps and bumps are sore, have you been to see a dermatologist? It could be a skin problem. Have you tried any sort of cream or lotion on them?
Sorry for asking for the up-date, but it's the only way to get the feel of the problem.
Hi greygoose , to be totally honest , we are as much in the dark as you , we've got different docs saying different things , 2 reasons respiratory are being involved is firstly one of the lumps and swellings is in the front of the clavical going down to the left breast , and secondly , i do find it hard to swallow and talk at times , it's like I'm straining my chest to try and talk , but as said as am much in the dark as yourself , sorry , dont know how to make things any clearer , just wish you could all see these lumps and swellings for yourselves , then you would be able to see what I'm trying and failing to explain . I have tried splitting T3 dose , i take 5mcg t3 and 75mcg levothyroxine in the morning and 5mcg in the late afternoon , am due to do another blood test a week tomorrow, sorry if answers a bit sketchy, just trying to make sense of what is going on with my body. 😕
So, do you feel any better for splitting the dose? I really think, based on the last lot of results, you need to increase the T3.
I see why respiratory are getting involved - although it does seem rather a long-shot - but surely other specialists should be involved, too. Has anyone considered a dermatologist? I'm not quite sure who you should see about lymph nodes, but there must be some type of specialist you could see for that. Just throwing out ideas, here, I don't suppose I would have any idea what the lumps were, even if I saw them. But, is it possible that your thyroid has regrown? It seems rather like your GP is dragging his feet, here. But, I do think you can rule out the pituitary, the hypothalamus and the Grave's.
Hi greygoose, sorry for the delay in replying to you , but been trying to work out what I'm needing to say , it's very hard to put into words on here the way you're feeling , but i would like to apologise for the reply last night , after reading it again it must of come across as being a bit flippant, but i can promise you it was not meant in that text , what I was meaning was if only the good people here could see the lumps etc , it would make things a little easier to explain as it is very hard to put it into words , anyway , on with the reply , it is quite lengthy, so i apologise in advance .
I'm not sure how the RAI works either , I can only go by what I'm being told by the ' specialists ' .
The A&E doctor didn't say for certain it was down to my pituitary or hypothalamus, he was saying it was possible and needed further investigation by the right people , because of my symptoms and what he was seeing and feeling when examining me , but unfortunately there was nothing he could do as he wasn't a specialist in that field .
The reason I had the RAI was because at that time I was hyperthyroid and they preferred that I was hypothyroid, it wasn't until around 10 - 11yrs after that treatment that I was told I have graves disease , but i dont know if i had that at the beginning and just wasn't told ?? I just don't know.
As for feeling better on T3, to be totally honest I don't know if i do or not , I have so much going on with my body right now , that it is hard to give a definitive answer to that question.
My symptoms are all still there , i.e, hair dry and breaking off , fatigue ( but am unable to sleep at night ) complete brain fog , my eyes very dry , gritty and irritable, ( it takes me not to rub them as I know that would just make them worse ) , my appetite is up and down like a yoyo , skin keeps breaking out in sores and as you know , got the lumps and swellings on left side of neck and now chest aswell , and also having a mini stroke accompanied by Horner's Syndrome back in April , so , as said , got too much still going on to be sure if T3 is working .
I really don't know where to go from here, I feel like I've hit a brick wall and there's no way around or over it , I'm trying to keep my chin up , but it's getting harder and harder every day . Thankyou for your time again greygoose ☺
Well, it's down to your doctors, really, isn't it. You're not supposed to be the one with the answers. They are! I think you're just going to have to be a bit more pushy to get referred to the right people. Did the A&E doctor write to your GP with his concerns? I don't know how that works. But, your GP appears to need a kick up the pants to get him started.
Some of your symptoms are saying that your really need that increase in T3. So, you need to push for that, as well. But, I'm not convinced that the lumps and bumps are thyroid related, and you need someone to investigate your lymph nodes - whoever that might be. Good luck!
Yes , A&E doctor is writing report to gp , but as of yet have heard nothing of this . Yes I agree I need to be more pushy with gp , but the more I try that , the less helpful he seems to be , yes he does need a good kick in the pants . It sickens and angers me that our health comes second to the gp's keeping within budgeting guidelines. If i do increase T3, what do you think the increase should be , and what should happen with T4 . At present I am taking 75mcg levothyroxine with 10mcg liothyronine sodium daily , the 10mcg is split into 2 x 5mcg doses ??
Thankyou for getting back to me , on the last blood test I done with medichecks on 11 / 7 / 2019 my TGA was 12.8 ku/L and my TPA was <9 klu/L .
As for seeing an endo , have seen 2 , 1 private , 1 NHS , although didn't ask to be prescribed T3 , the NHS endo prescribed it , but the way he told me to take it was totally shot down by the good people on here , saying the doses were setting me up to fail , so un fortunately, i dont think the endocrinologists were caring for me the way they should , they both were a waste of time and money ( except getting T3 ) ☺
I meant seeing an endo with regard to the lumps and swellings. They sound like an autoimmune attack affecting possibly the lymph nodes.
Your A&E doctor sounds great. Which specialists did he think you should consult?
I think an endo consult is warranted, and certainly not those two earlier idiots.
In the event the cause of these lumps and swellings is the remnant RAI-ed thyroid, an endo would be the most suitable specialist to assess you.
There is urgency to get this sorted. The symptoms are serious. I know you are feeling very ill, and having to fight the system on top of everything, is SO UNFAIR but fight you must! Seek out the earliest appointments to get yourself to the correct specialist.
Hi ling , firstly thankyou for getting back to me , secondly I am so sorry for not getting back to you sooner , I've been really unwell .
Just to update you , i saw the respiratory doctor on Sunday, he said that he doesn't believe any of the problems I'm having are cancer related , which in some ways was good news , but he did say that he felt that the problems I'm having were related to the auto immune system and that this did warrant definate investigation via a haematologist and is contacting my GP with this finding. So in a nutshell, i need to be referred to a haematologist, hopefully my GP will get his thumb out of his backside and arrange this as soon as possible, but I'm not holding my breath . Many thanks again ling and you take good care ☺
Hi ling , thank you for that lovely reply , and you are definitely not disturbing me at all , I will keep you posted with updates regarding haematologist. Am doing blood test tomorrow from medichecks, will update with results when have them. Thanks once again for your kind words , take care and God bless ☺
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