Doctor is finally giving me carbimazole

[Rmichelle]

Hi all its me again, im worn out today ringing docs getting advice about propranolol and side effects etc, they were making my breathing worse , did do a pist this morning to you all and the sickness and spaced out feeling wore off. Doc said he could not understand why the doctor i saw would not prescribe a low dose of meds till i saw endoc- he had left me a prescription to collect tomorrow at chemists 20mg i think. Doc said there are no other beta blockers he could prescribe as they all have the same effects!!! Em not sure on that, there are loads. The doc i originally saw didnt even refer me on a urgent so the tracking system for appointments are going to contact the doc again and try and push it through. I mentioned about my iron levels he did say em they are a little lower but nothing to get excited about' well im beginning to think i dont trustbany of them with my health. i am picking my test results and ranges tomorrow so i can post them on here to people who know what they are talking about.x

[Fruitandnutcase]

Hate to say it but urgent will probably turn out to take three months. I was shocked that I could feel so ill and my TSH was so low it wasn't registering - I was cheerful told on one visit when I said my TSH was 0.03 that it was ' probably much lower than that, that's as low as the lab goes'. Hopefully you will have blood tests after four weeks on the 20mcg carbimazole and then again regularly after that until you see your endo.

I was tested at four weeks then got a letter from my endo telling me to increase the carb to 40mcg only my bloods weren't done again until I went for my first hospital visit after another two months and by that time I had become quite hypo! So keep a check in your bloods until you are seen by your endo.

Also my pharmacist told me to take a large dose of vitamin C along with the carbimazole. I was so stunned by it all - I mean to go from 'hypochondriac' to someone with something actually wrong with them Graves Disease and to have a doctor who actually realised I was ill, was amazing. I knew I felt ill but for a doctor to realise that was so amazing that I was just stunned by it all never thought to ask the pharmacist why he said to take the vitamin C - I just did it. I used to take 1000mcg slow release vitamin c with zinc.

So good luck with it all, it will be interesting to see what your little bit low iron results are

[Rmichelle in reply to Fruitandnutcase]

See i was not told i need to get tested again in 4 weeks do i book a appointment with doc then go to hospital for bloods?

[Silver_Fairy in reply to Rmichelle]

6-8 weeks is probably best to see how the 20mg is affecting you.

[Rmichelle in reply to Silver_Fairy]

Thankyou silver fairy there is so much to take in. Its disgraceful we have to wait along time to see endoc.

[Hidden in reply to Rmichelle]

You make an appointment with the nurse at the practice in our area.

You sound a bit better. If it were me I would go back in a month as if

you go for longer you don't know if you've taken too much and might be put on something else to slow it down. No need to reply.

[Rmichelle in reply to Fruitandnutcase]

Aftsr 4 weeks do i book app with my doctors and arrange a blood test with them to go to hospital?

[Nanaedake]

That's good that you were able to get back to the doc about side effects and good that you were cautious about trying the BB. We'll look forward to seeing your blood test results!

[Rmichelle in reply to Nanaedake]

Yes i cant wait to get them, im pretty sure my iron levels are not where they should be.

[deesbees]

That sounds horrendous but sadly familiar.

With hyperthyroidism, you *should* automatically be referred to endos as it can be life threatening. It took years for me to be diagnosed properly too despite blatant symptoms. Rubbish eh.

Regarding Betablockers, - im on bisoprolol which are a million times less mongy than propanalol which left me like a zombie too, so ask about trying those.

Maybe getting another GP would help too.

Regarding bloods - i always ask my endo if i can just get it done at the hospital as its almost impossible to get thru to the drs surgery and if successful, still weeks before you can get them done anyway, so my endo just used to give me the form and id bob in when i was due.

Its all gone electronic now so i ring his lovely secretary and she raises the request so it *can* be very straightforward if you ignore the dumb comments from ill informed medics and take a bit of charge of it all...

I use solgar gentle iron and have done forabout 20 years now. They dont cause any sideefects like constipation and taken last thing with a bit of water with lemon juice for vitamin c - essential for iron absorption, made me feel amazingly energised.

I still have my thyroid, have refused block/replace, surgery and RAI and have learned to largely self manage as life for me isnt that straightforward mostly - just too busy to be ill!

Diet is vital, not overdoing it, learning to say no, deciding which things are important and what is not, all helped, as did a couple of the most awesome friends stepping in when i was struggling a couple of times. Make sure you get magnesium too - i have a glass of andrews liver salts (1tsp) daily which helps me hugely too. And eat lots of fresh veg and fruit.

Watch with oral health - calcium can be leached from the body, which has happened with me so i have few teeth left and numerous problems with those still existing, (they crumbled) but a bigger worry is loss of bone density, which doesnt seem to have affected me yet - i do a bit of impact exercise to help and eat tahini and yeast extract on toasted bread (its really nice actually, i thought itd be vile lol) as well as dark greens - more calcium available than in cows milk, which wasnt designed for humans anyway!

Lots of fibre made me the flatus queen which can be amusing if you're a bit infantile like me (only the head at kids school that gets annoyed lol but that just makes it funnier!)

Sussing out which foods make digestion harder is trial and error, im now unable to eat chilli sadly, but small price to pay (and no loo roll in the freezer issues either!)

Have a look at Elaine Moore's site, shes fantastic for oodles of info and she advises against thyroidectomy/RAI and controlling antibody levels. Loads of info on here - you started at the best place!

Good luck n let us know how you got on eh? Xx

[Rmichelle in reply to deesbees]

Thankyou deesbees feel horrid ive tried pushing for a more urgent appointment but say 3-4 months is normal. Being breathless is rubbish and m suffering today.im going to start my carvimazole today but eanted to take it when my hubby is in as doc said that if i get a sore throat and high tempbgo straightbto hospital fir bloods.?

[deesbees in reply to Rmichelle]

Carbimazole can do that, yes , but isnt common, so try not to worry too much. I didn't get on with it, was overcorrected, felt worse on it, yellow eyes etc n refused to use it, asking for ptu instead. Just as grim but fewer side effects plus it works differently so i get by fine on it.. BUT!! Many folk have NO problems with it all and take it fine for many years with no issues, so dont be put off. Ptu comes wiith its own side effects but im lucky not to notice them too much.

Honestly, you WILL feel more normal in time, it just takes a while to get your normal levels back.

Yes, if you have the sore throat etc get to casualty and tell them you just started carb so they know what to sort out as rare but treatable blood disorders can be a side effect of carb, but like i say, theyre not common at all nor are they really rapid - takes a few hours/days/weeks to manifest, trouble is they cant predict who's going to develop it so its standard advice, which is irksome as us hypers feel stressed anyway without feeding into it further!

Taking it at night works better for some, for others its mornings after food, and with others it can be another pattern - its all down to each individual. It takes a week or so to start bringing thyroid activity down so the improvements wont be immediate, the breathlessness and other symptoms do fade away but if its autoimmune youll probably have *some* symptoms for life. I certainly do but work around them so i dont struggle as much. Just get as much rest as you can and hang in there honey, it will get better.x

[Rmichelle in reply to deesbees]

Thankyou im going to start them in the evening. You have been very kind thankyou.x

[deesbees in reply to Rmichelle]

You're very welcome, its so horrible starting treatment as you really are in the dark as to how itll affect things, then all the scary warnings too. It can be miserable but you've found the right place for helpful advice and info honey xx good luck and keep us posted eh xx

[Rmichelle in reply to deesbees]

Thankyou, and i will keep you informed.x

[Valarian]

The beta blockers might help with the breathlessness. My gp put me on calcium channel blockers rather than bb, as I've got high blood pressure and am over 55, but they help with the breathlessness, palpitations and fast high rate that are characteristic of being hyper. If

[Rmichelle in reply to Valarian]

Hi valarian yes its horrible the breathlessness i am taking liw dose of beta blockers x3 a day dors help a little, i now have carbimazole to take this evening at 20mgs, i am 47 and my blood pressure was on the high side also have my blood results on this site now which shows iron levels in lab range but a few people have commented that they are low take a look please and see what you think. I sent them last night. Sorry if you have commented on them already i tend to loose track on whos repled back sometimes. Brain fog.😨

[Valarian in reply to Rmichelle]

I'm no good at interpreting the results - but there are plenty of people, who are, and I'm sure one of them will pick it Up