Untreated hyperthyroid- A&E?: I was diagnosed... - Thyroid UK

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Untreated hyperthyroid- A&E?

Hyperbee profile image
64 Replies

I was diagnosed with an overactive thyroid (Graves disease) at least 5 years ago. I complied with the treatment (carbimazole) for a year but saw no improvement, so as a silly young person simply stopped taking it. Since then I’ve treated it on and off, taking the tablets a few weeks at a time and then stopping for months. I know it was stupid, and I’m now aware of how much I need them.

My symptoms have gotten a lot worse and almost unbearable. My heart rate is extremely high even while resting, I shake like a leaf and sweat like a pig, and even just walking up a flight of stairs makes me feel light headed and need to sit down.

The problem is that I’m not registered with a GP, and doing so will take 2 weeks. I visited an walk in NHS clinic today but was just told to register and wait the 2 weeks. I tried registering as a temporary resident but was rejected by all the GPs near me. I’ve exhausted every possible avenue to get my hands on those tablets. NHS 111 told me to go to A&E but I’m unsure about this as it’s not currently a life threatening emergency. Would they take me seriously or just turn me away like all the other services have? Any ideas?

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Hyperbee
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64 Replies
MissGrace profile image
MissGrace

If your symptoms are unbearable, your heart is racing (which is a risk) and you cannot wait and need help, go to A&E. It’s what I pay for my taxes for - so help is there for those who need it. There will be plenty of drunks in A&E who have brought their condition on themselves. You are genuinely ill, not a time waster. I’m surprised the walk in clinic were not more help - I think they can prescribe. If you can’t cope, get help. 🤸🏿‍♀️

Hyperbee profile image
Hyperbee in reply toMissGrace

Thanks for the reassurance. The walk in clinic were useless and refused to prescribe without a blood test- which they also refused to do even though they have the facilities. They didn’t take me seriously at all. I said I could have a thyroid storm and die within the next 2 weeks and she said ‘you better register quickly then’! I’ve had a few instances where I thought I was having a thyroid storm and I’m not keen on waiting for it to happen for real. I’ll suck it up and go to A&E, and actually comply with the treatment from now on. Thanks

Nanaedake profile image
Nanaedake in reply toHyperbee

You will need a blood test but the hospital should be able to do it quickly as they usually have a lab and then can prescribe, in the meantime they should check vital signs and make sure you are otherwise alright.

After initial crisis management you need to find out what antibodies have actually been tested and what you've been diagnosed with as both Hashimotos and Graves disease thyroid conditions can cause an overactive thyroid although with Hashimotos it will settle into hypothyroidism. Ask for copies of results of any tests they do so you've got a copy and can follow up with GP when you get registered.

MMaud profile image
MMaud in reply toHyperbee

I can totally understand why a GP, with zero knowledge of you would prescribe anything for a condition such as hyperthyroidism. For all she knows, you could have presented on amphetamines, and thus with the racing heart beat, sweating etc.

Please don't think for an instant I'm suggesting you were. I'm not, but I can also see why she was probably in a very difficult siuation.

Have you tried turning up at a local GP msurgery and explaining what's doing on there and then? My surgery has has a self-service BP - your blood pressure would likely be elevated.

Our surgery has a sit and wait clinic every morning, before 10:30, which could be the ideal time to present.

You do need to get this sorted out once and for all. Our bodies are fab at coping with some stress, but prolonged stress from hyperthyroidism becomes a lot to ask.

Good luck with it all, and I hope you can start to feel better very soon.

Hyperbee profile image
Hyperbee in reply toMMaud

If that were the issue I feel like she should have at least done a blood test or told me to go to A&E, instead of just telling me to register with a GP and wait a few weeks.

I’ve called all 10 GP surgeries near me and they don’t want to know. I explained the situation and asked for an emergency appointment/prescription/to let me see a doctor as a temporary resident. They all say I can’t see a doctor until I register, which takes 2 weeks. What a stupid system.

I then called 111 and they told me to go to the walk in centre, but they didn’t want to know there either. I called 111 again after that and was told to go to A&E but was unsure if it’s serious enough or if they’ll just turn me away too. But I’m out of options now so I will just go and see what happens. Thanks for the suggestions

MMaud profile image
MMaud in reply toHyperbee

I'm being devil's advocate here, but you're finding it supremely unimportant for a few years; ignoring your condition won't have helped.

But, in terms of moving forward, I'd go into my local pharmacy and ask for a consultation with a pharmacy. The pharmacist will not be able to prescribe thyroid meds for you, but may be able to help you get some attention somewhere.

The pharmacist will at least be able to give you a bit of a once-over. Some pharmacies have relationships with surgeries - in fact some in within surgeries.

I'd give that a whirl.

Bottom line is you need to get registered. Eveni if it is a two week process, by registering somewhere on Monday you are closer to help than you are tonight.

I'm not trying to be unsympathetic, but surely registering somewhere anyway is your safety net? Without that, you could go on like this for another 2 weeks and still not be registered, with yert another 2 weeks to wait.

Finally, I don't know what your financial position is like, but there are lots of Privayr GPs out there. Yes, it would cost to see them, then the tests and so on, but just thinking outside the box.

I'm sorry it's all being pretty rubbish for you at the moment.

Hyperbee profile image
Hyperbee in reply toMMaud

I know it was stupid, I stated that in my original post. Although there are reasons that I didn’t mention- such as having body dysmorphia and the fear of gaining weight from carbimazole, which would absolutely destroy my mental health. But now it’s had a terrible impact on my physical health, so I can’t win really. Regardless of it being my fault, I still think I should be able to get urgent treatment and not be left to die lol. As MissGrace mentioned, there will also be plenty of drunks in A&E who brought their condition upon themselves. I do plan on registering on Monday but that won’t help me if I have a thyroid storm before the wait is up, which judging by my current symptoms is very likely. I had a look at private GPs but they cost over £200 per appointment and I’m a student. I’m going to A&E soon and will see what happens, NHS direct did tell me to go there so hopefully they’ll help

MMaud profile image
MMaud in reply toHyperbee

Does your college or Uni have a medical service at all? Lots of Unis have surgeries on site, used to disorganised young folks, for whatever reason, rocking up.

I don't know whether you're saying you're off to A&E tonight, but if not, there will be dispending pharmacies open tomorrow. Your local newspaper or their website should publish that info.

Hyperbee profile image
Hyperbee in reply toMMaud

I just called a few pharmacies near me and they either won’t do it without a prescription, don’t have it in stock, or do have it in stock but would only give me enough for a few days. I explained the situation and that I’d need it for 2 weeks but they said they can’t prescribe for that long. All of them told me to call 111. Who knew it was so difficult to get an emergency supply of medicine! What a nightmare. My uni don’t have a medical service sadly. Looks like A&E it is

bantam12 profile image
bantam12 in reply toHyperbee

You cant just start taking medication without knowing your levels so a blood test before is vital.

Hyperbee profile image
Hyperbee in reply tobantam12

At this point I’d happily take it until I was registered, but that’s not possible. The only option now is to spend all Sunday in A&E. If they also turn me away I will lose my mind

MMaud profile image
MMaud in reply toHyperbee

But isn't a few days worrth, even if you have to take fractions of a dose, better than nothing, as you go through your registration process?

People are trrying to protect you; not abuse you.

Sometimes a solution is made up of many steps or parts. Problem to full solution in one step isn't likely to happen for you.

Hyperbee profile image
Hyperbee in reply toMMaud

I don’t understand why you’re so opposed to me going to A&E. Suggesting I take a quarter of a tablet a day (which would still keep me at risk of a thyroid storm) and play roulette with my life is beyond ridiculous. I have exhausted every other avenue, an NHS direct doctor told me to go to A&E, and that’s what I’m now going to do. No further comments necessary.

alchemilla12 profile image
alchemilla12 in reply toHyperbee

well go to A&E !! people are trying to look at other ways to help if you are reluctant to go to A&E as you seem to be

Hyperbee profile image
Hyperbee in reply toalchemilla12

I was unsure as to whether it was serious enough to warrant an A&E trip, nothing to do with reluctance. If you think suggesting I take a quarter of a tablet a day *which would still keep me at a very high risk of a thyroid storm* is helpful then you’re insane. This conversation is now irrelevant, however, as I had already decided a day ago to take the advice from doctors and the other 99% of people who commented on this post.

alchemilla12 profile image
alchemilla12 in reply toHyperbee

I have no idea if takig a 1/4 tablet is insane or not -I didnt suggest it - I was merely pointing out that lots of people havebeen saying you need to go to A&E but you seemed to be putting reasons why not

bantam12 profile image
bantam12 in reply toHyperbee

So have you been to the hospital ?

Hyperbee profile image
Hyperbee in reply tobantam12

Yes I now have carbimazole and an appointment with the endocrinologist next week

bantam12 profile image
bantam12 in reply toHyperbee

I hope you asked for a copy of the blood results so you have them for reference.

Islander1234 profile image
Islander1234 in reply toHyperbee

Easy wasn’t it?

Hyperbee profile image
Hyperbee in reply toIslander1234

The problem was never the difficulty, but perhaps you didn’t bother to read the post. I’m astonished by how rude and unsympathetic some people can be in such a situation, but thankfully people like that are in the minority and hopefully nowhere near the health services.

Islander1234 profile image
Islander1234 in reply toHyperbee

I hope you don't think I was being unsympathetic. I read a lot until I found that you had eventually gone to the hospital as so many were advising and it seemed that you had been seen and had got the meds. Hope you are feeling better and that all goes well with the endocrinologist next week.

Ziburu profile image
Ziburu in reply toHyperbee

But surely they’ll have student welfare?

They must have pastoral care to look after the physical and mental health and well-being of their students?

Saying that I can imagine it could be crap or non existent, judging by the very non joined up thinking of educators and hence the rocketing student suicide rate. Which is going unaddressed and hence in the news lately.

I’d agree with the a and e route. Also there’s a thing in A and e which is the mental health ‘crash team’’ or some similar name. They are specialists in mental health and as your issue has been bought about by your continuing anxiety issues, I would think they may be able to help. The med docs will also give you the once over but then the crash team will also step in for the anxiety that has brought you to this crisis. Worth a shot. Take care and good luck xx

Ziburu profile image
Ziburu in reply toZiburu

Forgot to mention when you arrive in a and e you ask to see the mental health crash team. You should also be seen by a and e medical doctors as well.

julesblanchland profile image
julesblanchland in reply toHyperbee

I was diagnosed with Graves in Oct last year. I was in a & e many times because my heart rate was out of control (190 bmp for 7 hours) they do the blood tests there and then, and we're able to give me the relevant tablets. I urge you to go to A & E x

ling profile image
ling in reply toHyperbee

Really empathise. Body dysmorphia can have very serious consequences.

How are u doing?

birkie profile image
birkie in reply toHyperbee

Hi hyperbee

I was diagnosed with overactive thiyroid in Sep last year..I was started in carbimazole I felt no better..I was brining the tablets bk..I was worse on them,,was rushed to A&E with a very fast heart rate,vometing ,shaking and sweating..they took me off the carbimazole and was not allowed bk on them..whilst in A&E the nurses and doctors said they could do nothing for me as we didn't have an endo on at the time.just saw my doc who pescribed propylthiouracil unfortuntly the Same thing happend I was very sick on them..anyway I just kept taking them...and now I have a very bad lung infection been bedridden for over 2 weeks..I'm not able to take any tablets as I'm choughing up gook,,and feel very sick...I get the feeling docs,consultants don't give a dam about us my doc as not bothered asking how I am...I could be dead for all he cares...He knows I have a thiyroid condition and now the lung infection and he wants bloods done to but he as not contacted me...iv also put my back out choughing and can't move very well..he told me the anti thiyroid drugs I'm on can lower your white cell count causing infection..don't I know it,,,,you should be seen asap,,,as overactive thiyroid is no joke...hope u get sorted,,and soon good luck...

Hyperbee profile image
Hyperbee in reply tobirkie

Wow sorry you’ve been through all that, I hope you get better soon

birkie profile image
birkie in reply toHyperbee

Hi again hyperbee

I can understand your frustration at your hyper problem..some on here have given me great advice but I don't think some understand the problems we can have regarding GPs and consultants,,I live in a very small town and my surgery is small...this is not the only surgery I have been with in my town,,I moved because the surgery was not good,,,now with my present surgery I have had many illnesses to which I feel I'm just a number..diagnosed 2006 with ME,,Fibro,,then had a rather large clot on my retina..2015 rushed to A&E vometing blood,,passing blood,,result from consultant,,,"we don't know what's wrong with you you had a massive infection in all your intestines don't know why....let's say you have colitis.....and now I have a bad lung infection as I said in my last post...some GPs are great but some are going by the nhs book,,,I have not been helped at all by any of the gPs consultants,,,God iv not seen a consultant yet..I cannot stomach the thiyroid meds for some reason they do not agree with me...my GP knows this but is forcing me to comply..take them and throw up...can you imagine the pain I'm in with choughing alone,,then I take the poison and wrench it bk..for god sake are we pacients or numbers,,,,so hyperbee I can relate to you in every way iv tried everything I can for my GP,,consultants to help me but the nhs rule book gets in the way...quotas from so called people who are there to help..."sorry we can't help..try to see your GP,,ring GP surgery " Ho I'm sorry the surgery is full you can make an app for 2 wks...if you say it's an emergency they the surgery staff ask for deatails 😡 And it's them who decide how far you get...that's the reality of our system today...for those who don't have this I'm pleased for you,,,your so lucky...I'm having to ring my surgery tomorrow because I'm not recovering well,,,not looking forward to that,,,,explaining to reception that I need to see a doctor eventho I have a lung infection,hyperthiyroidism,and other prob,,I'll b lucky to get one.......😡😡😡😡😡😡

Nanaedake profile image
Nanaedake

Yes, go to A&E, hyperthyroidism is serious. Perhaps you haven't realised that but you do now and you need help fast. Lots of young people have trouble staying registered with a GP due to moving for university and then back home and then for a new job so you won't be the first. Just be brave and go to A&E and accept their help.

Please come back and tell us how it's gone.

Hyperbee profile image
Hyperbee in reply toNanaedake

Thanks for the reply and being so understanding. I will go and see what happens

MissGrace profile image
MissGrace in reply toHyperbee

Let us know how you get on. Hyperthyroidism is a complex and can be a dangerous condition. It won’t help your condition if you are also feeling anxious because you don’t have the medication. Look after yourself. Good luck. 🤸🏿‍♀️

Nanaedake profile image
Nanaedake in reply toHyperbee

If possible take someone responsible with you to A&E so you are not on your own. If you are feeling very unwell you will not be your own best advocate. If not possible to take someone sensible then go and be brave and refuse to leave until you get help.

Edit: A&EA might be more sympathetic if you at least register with a GP asap, even if it takes 2 weeks to complete process, you can let A&E know you've started the process. They will want to send details of any treatment to the GP.

moiqbal profile image
moiqbal

I used to work in NHS not at present. My advice is:

GO TO A&E.

MAKE SURE THAT YOU MENTION THAT YOU HAD HYPERTHYROIDISM.

BEST TO GO DURING THE WEEKDAYS, DURING NORMAL WORKING HOURS OR A LITTLE BIT EARLY IN THE MORNING. USUALLY IN MOST BIG HOSPITALS THERE IS AN ENDO REGISTRAR ON CALL DURING THE DAYTIME. AT LEAST DURING THE WEEKDAYS. SOME WILL ALSO HAVE URGENT SLOTS IN THE CLINICS, YOU CAN BE SLOTTED IN TO PRETTY QUICKLY.

GOOD LUCK.

I HOPE YOU GET TO SEE A SYMPATHETIC ENDO.

Caps are intentional.

Did you hear me - Go to A&E.

BethanyJean profile image
BethanyJean

I was diagnosed 7th dec 2018. I went to a and e with similar symptoms which ks then when i found out. They will help you and they can get you started on medication. Im finally only just starting to feel human again, many hospital visits and admissions later. If we would have found it before my levels got to high, we may have been able to avoid all the visits and admissions. Please go to A&E dont risk your life! (Carbizamole hasnt made me gain any weight so far)

Djb20 profile image
Djb20

I ended up at A&E because I was slurring my words, ached all over, couldn't remember simple words like "car", and friends were asking if I had had a stroke. And I felt insane and drunk. I don't drink.

A&E checked my blood and diagnosed me with hyperthyroidism that afternoon. If you know you've already got it, even better, just tell them. They will at least give you meds to tide you over until a GP is sorted out. Be aware untreated hypo can land you in a coma!

It's an emergency, simple as that. Don't feel intimidated not to go. All the best.

Alma1960 profile image
Alma1960

Sounds bit life threatening to me

helvella profile image
helvellaAdministrator

If NHS 111 told you to go to A&E, please don't hang about here wondering if you should, or should not, go. Just go.

As some others have said, uncontrolled hyperthyroidism is an emergency. It is impossible to predict the course of the hyperthyroidism - you could hang on for days or weeks, or suddenly flip into the serious life-threatening phase. The mortality rate of thyroid storm is frighteningly high, even with good care.

MaryannTincan profile image
MaryannTincan

Sunday - You admit you have been silly, and you have.

You must get help today, and register with a GP tomorrow. You have to have a blood test so the doc knows how you really are.

The condition will not get better by itself, and if you take pills they don't always work immediately. You might be put on betablockers which will, thankfully, settle the heartrate.

I had an overactive thyroid and was pushed into coming off carbimazole and having radioactive iodine. It is 16 years since all this happened.

You have no choice - get to a doctor for help and stop being silly.

purple64 profile image
purple64

Go to A&E you can't risk it of your heart is racing.

Fruitandnutcase profile image
Fruitandnutcase

Who prescribed the carbimazole in the first place? You must have been registered with a doctor in the first place. Surely you need to go back to them. I’m with Mmaud in this one, you can’t just mess about with carbimazole.

Carbimazole is a powerful medicine and I’m not sure that a GP will supply you with it just because you turn up and ask for it. As a rule it is only prescribed by an endocrinologist. Yur GP may decide to start you on a low dose like my GP did ( my practice file shares with our local teach8ng hospital) but you will then need to be referred to see an endocrinologist which takes months - I waited three months for that - had the little amount of carbimazole that the doctor prescribed was increased when my endo saw the blood test results after I had been taking it for four weeks.

When you eventually get carbimazole you need to be sensible and comply with what your endocrinologist tells you and you will get better.

In the meantime I suppose A&E will be able to do something in the short term for you but long term you will have to register with a GP, get booked in with an endocrinologist and than do what they tell you to do until your system sorts itself out.

helvella profile image
helvellaAdministrator in reply toFruitandnutcase

Trouble with going back to original GP is this: at least 5 years ago.

Who knows what has changed since then? Different country? Surgery closed and doctor retired?

Fruitandnutcase profile image
Fruitandnutcase in reply tohelvella

Could be, even then a lot of people still have access to their original doctor.

Assuming she was treated in the U.K. then if OP hasn’t signed on with another practice then she could well be registered with her original doctor and five years isn’t really all that long.

My husband hadn’t seen his doctor for a lot longer than that up until he had his hip replacement last year but he was still registered.

My older son hadn’t seen the doctor for so long the senior doctor called me to ask if he was still living at home - when I said that he wasn’t it was suggested (nicely) that it would be better if he transfer to somewhere local to where he lived, his notes which probably take up a few lines on a bit of paper have been sent to wherever nots get sent to between GP surgeries and as far as I can know he still doesn’t have a GP but if it takes two weeks to get registered then I think maybe he ought to do it.

Hyperbee profile image
Hyperbee in reply toFruitandnutcase

It’s several hours travel time and I’ve been with many different practices since then, there’s no way I’m still registered there

Fruitandnutcase profile image
Fruitandnutcase in reply toHyperbee

I think you need to go to A&E and get yourself seen as soon as possible. You can’t go on with the pounding heart - although saying that I did but looking back I was stupid and consider myself lucky that I didn’t die. I was so hyper that if I’d been involved in a car accident that could have been the end of me.

Don’t know if you have someone you can take to A&E with you for support but that might help.

I don’t know what others think but maybe you could just say you had Graves - hyperactive Thyroid with antibodies - a few years ago and that you’re sure your Graves has come back and you need treatment because you feel as if you are about to have a heart attack - leave it to them at that point - tell them you need help but aren’t registered with a doctor and that is causing you a lot of difficulty etc.

You have my sympathy, it’s difficult enough to get an appointment when you are registered and having listened to someone from overseas trying to register at our practice recently that didn’t seem to be easy either.

When you finally get treated though don't mess around with it this time.

Jmw444 profile image
Jmw444

At any cost get to a Dr. I did the same thing years ago and went into thyroid storm. Look out up. It's no joke. I could have died. I had A fib, a pulse rate of 190, BP was deadly and they had to stop my heart to get it beat regularly again. Please go see someone! RAI sounds scary but it actually isn't. I had it done in 2015 and now am hypo and being treated with levo. The Dr who did the rai gave me a small dose so that I now only take 75 mcg of levo and do well on it. Art first I also took cytomel but after a year I didn't need it anymore. Life is much better now. No palpatations and sleep much better. Being hyperthyroid isn't fun. My heart goes out to you.

Hyperbee profile image
Hyperbee in reply toJmw444

Wow glad you’re doing better now. How long did it take after RAI for your hormone levels to become stable? Did you gain weight from it? Last time I saw an endocrinologist (about a year ago) he gave me a month on carbimazole and then tried to push me towards RAI. I said it’s only been a month and I’d rather stay on carbimazole forever than go underactive forever. But he still kept trying to force me into RAI, so I just stopped seeing him

Jmw444 profile image
Jmw444 in reply toHyperbee

I felt the same way you do for years but eventually the hyper got me. I have Grave's too. After Rai I crashed about a month later. At first, the first month after Rai, I had all of this energy and lost 10 pounds. Then I crashed- depression, achy etc, and went to the doctor. I was given a low dose (50mcg) levo but within weeks i could tell that although it helped it wasn't enough. I started taking T3 with it and that helped a lot until my body became used to it. I only gained 15 pounds through the entire process and have lost 10 of it as of today. I think I initially wrote that this happened in 2015 but it actually happened in 2014. So it's been almost 5 years. My hyperthyroidism, for some reason, didn't allow me to stay super thin at the end. I started putting on a little bit of weight before I actually even had the Rai. The main thing is to stay on your doctor and continually let them know how you feel. I would go to mine crying. Lol. Have your levels checked frequently. Find a doctor who will also test your free t3 and t4. Putting on a little bit of weight is well worth the steady heart, the better sleep and of course the not dying! Peace and luck! Keep us posted!

Jmw444 profile image
Jmw444 in reply toJmw444

Also, after having Rai your TSH will never be that if someone that has hypothyroidism naturally. Or at least it will take years to change. Any endocrinologist will know this. so don't allow a doctor to tell you that you're still hyper based on your TSH!

Valarian profile image
Valarian

Oh dear Hyperbee. :(

Expecting you to wait two weeks in that condition is ludicrous. Head for A&E.

gav5684 profile image
gav5684

It doesn’t take two weeks to register. It takes 5-10 mins. You may well need to see a go before getting a prescription. If they can’t find a way to get you seen within days it sounds like a different surgery may be the way forward.

Hyperbee profile image
Hyperbee in reply togav5684

It takes 2 weeks for them to get your records sent over I believe, I was told I couldn’t see a doctor until then. I called every surgery within a reasonable travel distance and all said the same thing. It’s amusing considering the NHS website says anyone can get emergency treatment from a GP even if they’re not registered! I read the direct quote to all the surgeries and no one seemed to know what I was talking about. I went to A&E in the end

purple64 profile image
purple64 in reply toHyperbee

How did you get on at A&E

Hyperbee profile image
Hyperbee in reply topurple64

It went good thanks they did a blood test, gave me carbimazole and an appointment with the endocrinologist next week. They took it a lot more seriously than everyone else I spoke to, and in the past it always took months to get an appointment with the endo so god bless A&E doctors

purple64 profile image
purple64 in reply toHyperbee

Glad it went well take care

MissGrace profile image
MissGrace in reply toHyperbee

Really pleased you are sorted. Fantastic news. 😊

Nanaedake profile image
Nanaedake in reply toHyperbee

Very glad you've got the help you need. You can now register with a GP and not worry about how long it takes for them to sort out records etc. I hope you start to feel a bit better soon. Please do ask them for a copy of your blood test results and keep a folder or record of them so you can work together with the doctors to monitor your health. I find it helps to keep my own records.

tgirlnc profile image
tgirlnc in reply toHyperbee

This is good news. :) I tried to read through most of this thread..but there is a lot on here. First, you can always go and just pay for bloodwork in a private clinic and iI I have resorted to using TopDoc private GP to get stuff done fast..but glad they got you sorted. Second, Make sure that you are dosed to you Free T4 levels NOT TSH. Once you start back on meds, ask to get blood work again in 6 weeks to see where you are at then 6 weeks again..and again until you are stable. PUSH the GP..they are very lazy here (UK). You want to be sure that your dose keeps you in the upper range of normal for you Free T4 to feel normal. They should also prescribe you beta blockers to help with the heart rate. You may not feel great for a few months until you stabilize..but that is ok, it takes time. And if you have Graves, remember you have an AUTOIMMUNE disease. Your thyroid is the victim, NOT the cause. Please DO NOT consider RAI unless it is an absolute last resort and you cannot tolerate meds. RAI will only give you new problems for life. I have had Graves sine 2011..and currently in remission..and have been in and out of remission before..but studies show that if you are on the right dose of Carb. and can get your immune system to calm down, then you can stay in remission. You should also do research on autoimmune conditions (diet, supplements etc). The doctors will tell you none of this unfortunately and it took me doing my own research..pushing back on doctors..to save my own life. Just remember this is a process and you won't be better over night..but by the sounds of it, if you have functioned off meds for a time while having it..then you probably should be able to get stable rather quickly.

I really think that you go immediately. I am now stable on carbimazole and L troxyne combined. My life is totally normal. GPs didn't fix it over 3 years but superb endocrinologist balanced it over 3days.

Hoxo profile image
Hoxo

If you are worried about weight gain on carbimazole you can ask for block replace regime (if they still do this - mine was 25 years ago) where they give you a higher dose of carbimazole to block thyroid function then replace with a controlled known dosage of synthetic thyroid hormone called Levothyroxine. This keeps your thyroid levels more normal and minimises weight gain. At this stage tho your main concern should be getting that heart rate under control. Also they put me on propananol to calm rapid heart rate down and this helped. Such an awful feeling being hyperthyroid. Hope all goes ok.

GKeith profile image
GKeith

Please don't think I have no faith in doctors, or the Capitalist system: there are good doctor's out there but they are very hard to find, as, when you go looking for a doctor, you must also, first, find a human being (who just happens to practice medicine) but, please, you may (have to) end up tweeking your own doses (if you can even get the correct medication) just to feel well. We, unfortunately, live in a time period where the devil has run rampant among the human race and has us all quibbling over money and possessions. Most human beings (doctors included) consider themselves successes only when they have the possessions, the money and/or the fame and “pride & dignity” that go with it.

I haven't read all the answers here and I'm sure you'll be more than helped as to what to do. There are many human beings on this site, many of whom have more (medical) knowledge than I do. I just wanted you to know that you should not lose your hope, or your faith, in surviving this tragedy. You have done nothing wrong, on the contrary, it is those who are empowered to help you with their knowledge (through education and position(s)) and if you look enough you may even find a human being among them. That aside, empower yourself with the courage I can feel & even see that you have been given you by your Maker and, now, you must use it. Aside from being rude, talk to these people at the NHS and other places where you can go and demand to be seen: it is your right and if they ask you why it is your right, explain to them that you are a human being and equal (I know you're better than they are but, unfortunately, they don't) If you have money give it to them, and always get a receipt, but make sure they can prescribe to you the right medicine; which may not be T4, Levo, it may be you also need T3, Liothyronine, and the amount of the doses must be worked out. I wish you the best of luck and may god's grace and mercy go with you.

I'm in the U.S so I can't speak as well as I could if I were more familiar with the U.K but there are many hospitals here and I'm sure the U.K has many that are equipped to treat you as the emergency you presently are. Demand a blood test, ask to speak to a human being, a nurse, a doctor's assistant, anyone who can help your situation. Ask for a blood test and always get copies of everything they give you. If you ask to be treated and someone refuses you, ask for, and refuse to leave until you get, their name and position. Tell them you need a copy of something that shows they can (legally) refuse you treatment. May peace be with you and remember to not let your heart be troubled but also do not let it be afraid; use it, those you are dealing with all have hearts, they have just fallen asleep, wake them up and empower yourself. I know you can do it.

Meeka profile image
Meeka

Hi was reading your posts and I am in the States. I was diagnosed with Graves

disease or hyper thyroid in 2016. It took many hospitals and doctors but that

was the unfortunate conclusion. I was put on medication and sent to

an endocrinologist, heart, pain, and general all at the same time.

I was taking all kinds of medication and I was not getting any better.

They kept changing my dosages and than I would go from hyper to hypo.

My heart rate was steady at 140.

I could not work and I really hated taking the medication. I was getting blood

work every 10 days. My last visit with my endo doctor was not good.

My blood work show liver damage at 90% and now a liver specialist.

I was so tired of all this. I decided to go off all the medication and start

researching natural. I found a product with algae in it. The Algae ingredient

seemed to help me quite a bit. I also had to change my diet.

Eliminate all soy, tofu, sprouts. I have to eat carrots and spinach daily.

The day I left the doctor they told me I was close to a Thyroid storm.

They also told me they could not control my Thyroid and were having some

problems. I was hospitalized 4 times during the time i was with doctors.

I am not 100% better because the vitamin I was taking eliminated the Algae

and I could feel the difference but I am still searching for this Algae near the

Philipines somewhere.

Once I do find it I will post it .

Also I do take other vitamins that are good for the thyroid. Detoxadine liquid

drops, L Carnitine, Co Q10, N-Acetyl Cysteine.

I cannot eat Kale, or to much broccoli amongst other things.

This sounds bad but I have not been back to the doctor.

Actually only once to see if my numbers changed. They changed for the

better just a little bit but that was 2017.

That is my story. I wish all good health to you all.

Look at the foods you eat and what you drink. I feel this is key. No caffeine,

meditation, stress also is a big factor.

When the doctors told me is was going to die if I go off the medication, that

was very stressful. I was scared.

Islander1234 profile image
Islander1234

NHS 111 is right - you should go to A&E. Please do so.

helvella profile image
helvellaAdministrator in reply toIslander1234

Thank you for caring.

The post and almost all responses were from about nine months ago. For that reason alone, I shall close this thread to responses.

The original poster did go to A&E and did get to see an endocrinologist, eventually.

Would be good to know how she is doing now but that would be better in a new post.

The ability to reply to this post has been turned off.

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