thank you so much for all of the advice on my initial post.
I have a doctors appointment on Monday about support before my endocrinologist appointment with it being a 19 week wait!
Today I’ve found the right side of my thyroid is really swollen compared to my left!
I have an appointment with my head teacher Monday also to discuss support in school whilst I wait for the appointment and took the advice to explain about my tests and this points to Graves’ disease, school have been incredible I must admit!
Anyway!
I was wondering if people have any advice on specific questions I need to ask my doctor or anything specific I should be asking my school for!
Thanks in advance ☺️
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You could ask your doctor about getting help from him now - anti thyroid drugs and a beta blocker if it would be suitable, because you need something.
I suppose you could ask what contact he/she has had with the endo about you. My hospital and doctor file share which probably helped.
You could also check that the endo he is referring you to specialises in the thyroid rather than diabetes, they both come under endocrinology and there is a big difference.
I never had one but you could ask for your thyroid to be scanned if it is starting to swell but someone else might have experience of that.
Be prepared to be signed off work if it all gets too much for you.
When you eventually get to the hospital
At my first appointment my (junior) consultant outlined the various methods of treating an overactive thyroid.
They can titrate with antithyroid drugs - carbimazole or PTU
They can treat you with block and replace,
They can give you radioactive treatment
Or you can have a total thyroidectomy.
He said my hospital treat the fast way - with block and replace which is a high dose of carbimazole then when your bloods reach a certain level they start you on levothyroxine. He said the treatment lasts for a year which I didn’t think was particularly fast.
I actually had to ask the consultant if I had Graves as it had never been mentioned! The guy looked at me, pointed to me and said ‘YES, that’s what you’ve got, you’ve got Graves Disease!’ I was left wondering if I hadn’t mentioned the G word if anyone else would have. Most strange. I got the impression if I had had taken my husband in there with me the consultant would have ignored me and spoken to him. My treatment did indeed take exactly a year.
So you could ask how they treat Graves. I can definitely recommend block and replace if you get the chance.
Once I got started they regularly mentioned giving me RAI should I relapse - I told them every time that I was NOT going to have RAI - indeed I had a lot of evidence I found on here and in books about people who had been on block and replace for a lot longer than a year. I kept all that sort of stuff in the little notebook with my blood test results, so don’t be pushed into any treatment you are not 100% happy with but you won’t need that at this point.
In the end after I was discharged I saw my GP and asked if they could insist on me having it if I relapsed - she said No and if I refused could they refuse to treat me and the answer to that was another No so I went home and relaxed. That was in 2012.
Did you ever get your TSI tested? Because you only gave results for TRAB on your last post but posted them twice.
TRAB can be high in Hashi's, as well as Graves'. So, ideally, they should test TRAB, TSI and TPOab, to be sure. And, quite frankly, your TSH is still readably so I would question a diagnosis of Graves' until further testing has been done. If you do have Hashi's and not Graves' - which is a distinct possibility - anti-thyroid drugs are the wrong treatment.
Now awaiting further tests. I have no idea what any of it means in regards to what treatment is needed and things. The fought for weeks to get the tests done after ending myself in A&E with pain and once the results came in and I was referred my doctor shook my hand and sent me on my way
Yes, I know, I'm sorry. It's complicated and difficult to know how much anyone knows about their disease, and I don't want to be telling someone something they already know. But PurpleNails gave you a very good explanation tonight on your last post, so hopefully things are a little clearer now. What worries me is that your TSH is not suppressed and your FT3 not all that high, and we don't have a result for the FT4, so I question the diagnosis - or should I say the assumption that you have Graves'. There could be other explanations. But see what the doctors say, and I'd be interested to see any further results you have.
Typically Graves is diagnosed when TSH is suppressed / undetectable eg <0.01 & FT4 & FT3 are significantly high.
Often low TSH, elevated FT3 or FT4 turns out to be transient hyper. We don’t know where your natural levels might usually lie. So borderline high might be very high for you.
Testing gives a snap shot of that time, levels can fluctuate quickly in some cases. It’s important to treat continuous hyper levels. Even when described by some as “mildly” elevated.
You describe severe symptoms & are TRab positive, so I think you should be started on a low dose of carbimazole so levels can begin to be brought down. Dose can be increased or decreased depending on response & if levels naturally change.
GPs should consult with specialist & agree on starting dose. My GP phoned consultant for advice while I was in waiting room for a few minutes. If you emphasise symtoms & TRab positive & that leaving you untreated could be dangerous they should not disagree.
I would also tell dr about the one sided swelling, & ask for ultrasound scan. Often this might be via ENT consult. GP might say this will be up to Endocrinology. But push all you can, say that endo will be looking at thyroid levels. An asymmetry could be a different issue (likely related) and a second wait time could prolong it for months.
2 drs sent me off with a “fine looking neck” at 3rd attempt I said look at my lower neck when I drink. I Inclined head up drank a gulp of water from bottle I’d brought with me. Swellings move with thyroid when swallowing. I have a healthy side & goitre (nodule) the other side so the comparison was very visible.
I was sent for bloods & scan pretty quick. Had a fine needle aspiration at scan appointment & was cleared as benign. The blood got muddled up though so my hyper levels were missed.
By time I was diagnosed, I had suppressed TSH, borderline high FT4 & a slightly higher FT3 then yours when diagnosed. My levels had risen incredible slowly (years) I think I’d just adapted over time. Wouldn’t have said I was hyper, thought I might have hypothyroidism. I was Started on 20mg carbimazole. Levels should be re checked no later than 6 weeks later.
I’d had no antibody testing until much later. Due to miscommunication I had no follow up for 2 months. Levels were borderline low by then. TSH remained suppressed & remained so for years. Dose was halved to allow levels to rise again.
Tests eventually showed negative for autoimmune but a left sided toxic nodule. There’s always the possibility of autoimmune & nodules occurring together.
So my main advice is
1) Ask for low starting dose carbimazole, it can be stopped / adjusted if levels drop.
2) Ask for retest of thyroid levels, thyroid antibodies &, gluten screen. Schedule in less than 6 weeks time. Or earlier to check effect of hopefully starting carbimazole.
3) Ask for ultrasound scan of thyroid.
Have a list of main concerns & requests. Even if Doctor disagrees try have an assurance from them on next steps / plan.
Can you take someone with you? Having support from another can be helpful, if only to back up a point & help you remember what was agreed.
Your folate looks acceptable, ferritin quite good ( near optimal). Please can you type out B12 result.
Thank you for the wonderful information and advice! I have spoken to my doctor today with all the information and he’s told me there’s 0 he can do apart from ask for me to be seen quicker or sign me off work because I explained it’s not possible to feel the way I do for the next 5 months. He said he will send a letter asking for me to be seen.
I feel deflated if I’m honest and came off the call crying and then got myself back to work!
He said he will send a letter to the hospital with what I’ve said and ask for me to be seen as early as possible but apart from that or signing me off there’s nothing more can be done
A GP can easily prescribe propranolol ( betablocker), and they very often do this for hyperthyroid patients who are waiting to be seen by endocrinology , we see it being prescribed for this purpose every week on this forum.
(i gather it's not appropriate if someone has asthma , but other than that it can be used) Propranolol would help with the high heart rate , anxiety ,insomnia and also has a convenient side effect of reduced conversion of T4 to T3 meaning it will lower your fT3 levels a little .So you'd expect it would help with tolerating your symptoms while you wait
(my adult daughter was recently prescribed it for horrible anxiety, insomnia, fast heart rate , high BP etc , we thought she might be hyperthyroid from symptoms , but T4/T3 levels seem absolutely fine ~ anyway she is coping much much better at work now she is on it).
i know it's hard to work out how , but i really think you need to find a way to speak to a different GP .... and as for 'writing to the endo' ..... well there's this new fangled thing called a phone .
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Need advice...again
Advice when asking GP to test for Hypothyroidism
Medication advice
Probiotics advice - hyper/ graves / endo appt
Thank you for good advice and much support 
