I am really lost at the moment. I was told in Jan I was just anxious and turned away from A&E when I actually had a pulmonary embolism. I was rushed back in and given 3 months of thinners as I am apparently otherwise healthy - no need for a longer course. Case closed they said, despite me asking why a) I still felt rubbish b) why i had the clot to start and why I would not just have another PE?
Finally managed to get through to the GP after weeks of calling and getting an answerphone. Finally got a full bloods test done.
Gp calls and says I have B12 and hyperthryoidism - puts me on beta blockers only. I rock up to get the CT she ordered for abdo and they ask if I have any thryoid issues - yes - they look shocked and say they can't CT because of iodene and call GP to check. GP says they lost my bloods but not to do it in case. I am now confused. Go in for 2nd B12 injection and demand blood print outs which I have been asking for since first GP told me about results. Get print out, clearly says I have hyperthryoidism.
Why did they pretend they didn't have my hyper results?
Why didn't they stop the CT before I went to have it if it would kill my thryoid
Why are they still refusing to give me an urgent GP appointment to get medicated
Why has no one called to explain I have hyperthyroidism and what they are going to do to treat it
Why has no one put me on something to stop the hyperthryoidism causing another clot
Are they hoping my condition gets worse so I have to go to the Walk In and not bother the GP?
Why is my appt tomorrow with a locum rather than a regular GP?
I'm so exhausted. I feel they don't want to help me at all and it's making me really depressed. I don't want to get out of bed. I can't eat. I can't concentrate on anything. Got fuzzy eyes and am so forgetful. If anyone can help or advise me on diet/how to not crash on my 4hr drive tomorrow/why they aren't medicating me/what to say to the bored locum when he calls tomorrow?
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eatingbiscuits
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Thank yo so so much. I am very glad the hospital asked before CT - very surprised the GP hadn't stopped the CT request when they got bloods back. I'm confused why I am not on medication or had any advice. I've been debating trying to eat then going in to my walk in centre when the stomach cramps start in the hope of getting some actual treatment, but I am so dizzy and tired it seems like a lot of effort.
For some reason I seem to only be able to eat biscuits and sweets. Anything bigger and I get the pains.
they tend to give beta blockers at first to help with heart palpitations ( and it also lowers the T3 a little ...
prescribing antithyroid drugs ( carbimazole) to stop your thyroid making so much T4/ T3 is not usually done until the GP has at least discussed the case with an endocrinologist. and a proper diagnosis given. (because antithyroid drugs can have serious side effects)
Don't panic .. your fT4 and fT4 are certainly high enough to make most of your body and brain feel utterly lousy... but they are not high enough to kill you 'imminently' .
if they were higher eg:
FT4 more like 50/60/70
fT3 more like 20/30 , then they might have given you carbimazole at the the same time as they gave you beta blockers .
so i know it doesn't feel like it , but on those tests you were relatively 'mildly' hyper. sometimes going mildly hyper is actually the early stages of hypOthyroidism .. and if it is then antithroid drugs are not usually needed)
hopefully you'll get more experienced answers soon . SlowDragon
1) it can be Grave's Disease (autoimmune hyperthyroidism), this is caused by antibodies that stimulate the thyroid just like TSH does .
(TSH ~ Thyroid Stimulating Hormone~ comes from pituitary gland and it's job is to regulate T4/T3 levels ,,, it goes up to 'ask' thyroid to make more T4/T3, and goes down to ask it to make less)
These antibodies (TRab or TSI) mimic TSH and continually ask the thyroid to keep making more and more T4/T3, even though TSH is 0... so you go hyper .
this usually has higher T4/T3 levels than you have , and is treated with carbimazole
Testing TRab /TSI antibodies is needed to confirm if graves is the cause.
2) it can be the early stages of Hashimoto's Thyroiditis (autoimmune hypothyroidism)
This has temporary high levels of T4/T3 caused by the immune system damaging the thyroid gland.
Imagine the thyroids like a sponge storing some 'ready made' T4/T3 ... the damage squeezes some of this ready madeT4/T3 out into the blood stream .... so T4/T3 levels go high and will cause symptoms of hyper
..... but the thyroid is not being asked to make too much T4/T3 continuously , so the highT4/T3 levels in the blood are temporary, and will go down by themselves as it is used up .
(Carbimazole doesn't usually help in this situation.. because it works by stopping the thyroid from being able to make so much T4/T3.... it doesn't do anything to lower T4/T3 that is already in the blood)
... then (because thyroid gland has been damaged) ,..... it can't make enough T4/T3 anymore .....and you slowly go hypo. .. this can happen several times over the several years ...as the thyroid get's more damaged over time.
this hyper phase of hashimoto's can last anywhere from a few weeks to a few months,, and is often missed if symptoms are not too bad.
The antibodies that are tested to confirm Hashimoto's are called:
TPOab (Thyroid Peroxidase antibodies) but note , these are often mildly present in Graves too.
Thank you - I think I will need to re read all of this at some point as some is going in but I'm sleepy! I think actually the hyperthyroid has probably kept me relatively even through the B12 deficiency - prob why was hard to spot I guess. I got my period an hour after the first B12 injection on Mon so think it's possibly using up any stores - certainly not feeling great or hyper today! Also need to try to eat something I suspect, but the pain makes me feel I'm going to pass out so I've been avoiding it. Hyper and B12 have almost opposing things you are supposed to eat too!
I did get severe pain after having toast the other day and wondered about coeliacs so will make a point of asking for that test too, although meat seems to be hard on the tummy too.
what you eat won't affect T4/T3 levels at this point.. and if you are so low in B12 that you need b12 injections , then diet won't make much difference to that at the moment.
so don't worry about 'what' you eat ... just make sure you keep eating something nutritious in little snacks through the day if you don't feel like proper meals ,,, and make sure you stay hydrated.... hyper makes every part of your body go a bit too fast, sweating more , speeded up digestive system etc so you need to keep an eye on staying hydrated.
Also reading about De Quervains thyroiditis - I had De Quervains tenosynovitis after giving birth - game keepers thumb! Just trying to take it all in. Might need a brain break and a cup of tea (tea drinking consumption has trebled too!).
I asked them to check my FSH too which came back as normal. I have repeatedly had anemia but last time was only picked up when I went to donate blood, despite me having had a blood test specifically for it - was put on folic acid 5mg for 3 months in Feb '22 when I said I'd been refused to be allowed to donate.
Not vegan or veggie. Did wonder about ceoliac and thought I had asked for that to be tested but can't see it anywhere. My dad and daughter have terrible tummy/Diarrhea but I've never had that or tummy issues before now really. Even now it is just sudden strong pain around the diaphram, not lower down and no soft poo.
Just reading about Hashimoto's and although the scan showed no enlargement, I do really feel the cold, have dry skin (itchy scaly rash on left shoulder blade I've had since my 20's which I was wondering if was connected to thyroid), also hair loss and thin, my scales tell me I am retaining water and protein far more than I was in Sept (doubled!) while loosing lots of fat.
Yes, I've had 2 injections so far but no difference yet to energy levels. I did read a study about B12 being pointless until the thyroid is treated as it can stop absorption?
Yes, had 1st injection on Mon and 2nd yesterday when I got my blood print outs. Next is Fri morning before the long drive then last one on Mon. Every 3 months thereafter apparently. I will ask the locum tomorrow for those bloods and see what he says. If he won't then I will go privately.
So many jobs about the house I start then can't finish. Also really noticing the humidity levels with the breathing since my pulmonary embolism - not sure if that's lung function or B12 or anemia maybe all. I'm tired but can't sleep and don't feel rested when I do.
I want to cry - no phone call. I'm currently 17th in the queue on the phone line. I would have run at 8am if I had known. I've already waited 2 days for this call.
Which beta blockers? Propranolol often given, what dose have you been given?
Sometimes antithyroid is given straight away, sometimes drs prefer to repeat the test & check for antibodies to see if the rise in FT4 & FT3 is likely to be transient or longer lasting.
Antithyroid reduces new hormone so if levels are naturally dropping, it would be wrong treatment & very soon make you feel worse.
Your hyperthyroid and PE may be unrelated but having hyper would not have helped.
Iodine contrast wouldn’t not have harmed your thyroid but it might have accelerated the hyper.
Eye issues can be related to thyroid issues. I found doctors / specialists unhelpful, but an optician has equipment to check eye health & they were helpful advising eye cleanser / drops (preservative free) & writing a letter for GP to arrange referral. Some areas can liaise direct with hospital ophthalmology.
Has GP submitted referral to Endocrinology yet? Until that is arranged GP can repeat thyroid function, they can also arrange TPO antibodies & lab will test TG antibodies if positive. Specialist can test TRAb or TSI.
TPOab (Thyroid Peroxidase antibodies) & TGab (Thyroglobulin antibodies) confirm autoimmune. Autoimmune thyroiditis (known as Hashimoto’s) also present with Graves.
Positive Thyroid-Stimulating Immunoglobulin (TSI) & or TSH receptor antibodies (TRab)- which measures stimulating, neural & blocking antibodies confirms Graves.
I had similar levels to you when diagnosed & I was started on 20mg carbimazole, I later found out my FT4 & FT3 had been gradually rising for years, fluctuating levels can often make you more unwell.
That’s a fairly low propranolol dose. Has it helped symptoms? The advice is to see how the medication affects you before driving. I find it’s important to take propranolol as consistently as possible & timing delays begin to trigger headaches for me. Do not stop it abruptly. I was given 40mg x3 and specialist removed it after 2 months & made me very unwell. Went back on it for migraines prevention, took many month to slowly reduce to 10mg x3.
It has calmed the racing heart quite a lot - was jumping to over 130 when watching TV which made me feel panicked. I just feel I would rather than than being dozy at the wheel. I have to do 4hrs on Fri and Sundays and last week it was horrid but I'm fuzzier this week I think. I'm popping sweets every 10mins which can't be good for me but seems to keep me awake.
It is interesting on the whole as I burnt keytones when pg and had swollen ankles (had a diabetes test alongside these recent bloods and was 42 so given all clear) but I wonder if that was hyper too - it felt very similar and my breath tasted of pear drops to me, like nail varnish remover? I feel I can tell when I'm "in the zone" of it anyway (when I'm not clobbered by b12!)
42 HbA1c? is borderline normal / high. Hyperthyroid can often push up blood glucose. Did for me, I was recorded at type 2 not long after being diagnosed hyperthyroid, but as the thyroid became controlled so did the HbA1c improve. I’m now recorded as type 2, diet control.
Are you saying you have no thyroid follow up & this was from March? The results were dated May? Print date Prehaps? That’s terrible.
I don't think I have been referred - I haven't seen the same GP for years and the one who ordered the full bloods and CT was great but in a small village practice that merged with ours. I don't know who has seen the results since but the man on the top of the bloods as "Viewed" them back on 17th March isn't a name I recognise and hasn't been in contact at all. I don't really know what to say to the locum tomorrow. I've got to go in for B12 in the morning and he can be guaranteed to call while I'm driving and can't remember what he says or what to say!
I've just had a text to say I've been booked in for another CT! What? I am so confused, did they not list why I couldn't have it on Tuesday? It feels like such a waste of money.
So ....you can have a CT without iodinated contrast , no problem , it's just the iodine that has this known risk of worsening the hyper in some people.
i think ? they have other forms of contrast they can use for some things ? ( it rather depends what they are looking for .. some thing's will not show up very well at all without the iodinated contrast .... am way out of my depth here ~ don't know under which circumstances they really do need contrast for there to be any point , and when they can see well enough without it .
don't rely on anyone else to get it right .... the state the GP'surgery's and hospitals are in at the moment .. you do need to be on the case yourself.
find the number and phone the hosp dept. before appt and double check if they are aware of your hyper thyroid levels.. and then ask again when you get there .. etc .
Good idea about calling, I will try that. I replied to the mobile number that text me but suspect it doesn't accept messages. I'll tell the locum too. I don't fully understand why they've not done a stool sample or coeliacs first for the stomach issues. Thanks again - feels like I'm too tired to think through things very logically at the moment so your help is very useful!
Update: Locum didn't bother to call. Am currently 17th in queue after waiting 2 days for the call in the first place. I've got to walk up there in 30mins for the B12 too just to wear me out some more.
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