Deterioration of my hyperthyroidism

[Mumoftwomonkeys]

To follow on from my previous post, I've deteriorated and added to the tick list now. So the muscle weakness and pain has got worse, but now I've lost 3lbs in a week, and I'm a size 10, the excessive thirst, irregular periods, mood swings, poor sleep, dry eyes etc. I'm barely functioning.

The private test i ordered, they've messed up and haven't sent it, even though I paid extra, hospital test isn't until 1st April, and that's only if the form arrives on time, and I'm struggling to look after my kids and we have our holiday of a lifetime in two weeks today!

I know they have had me on too small a dose of carbrimazole, because they're not listening to my symptoms, and they're not regularly testing my t3 and t4, they're relying on the GPs tsh tests, which have been on a downward trajectory. Tsh was 1-2 last year, feb it was 0.8, and i know it's lower now for me to have these symptoms.

What are you meant to do when you know your dose isn't right and you're getting really sick - just stay at home getting sicker, waiting weeks for tests and appointments?

Any advice would be massively appreciated on all aspects of hyperthyroidism, understanding it and dealing with Dr's and the endocrine department. X

[SlowDragon Administrator]

are you also on propranolol- this slows uptake and conversion of Ft4 to Ft3

Will also reduce anxiety

You can’t be prescribed propranolol if you have asthma

[Mumoftwomonkeys in reply to SlowDragon]

They've never given it to me, as I've only once had palpitations, when they tried to reduce the carbrimazole before, late last year, and i don't get high blood pressure, so I don't think they'd give it to me?

[PurpleNails Administrator]

Do you have a way to track heart rate? I find heart rate correlates quite consistently with how high levels are?

I also brought a blood pressure machine to take readings at home which is very helpful as drs have an accurate result of a period of time.

Do you have access to any sort of walk-in clinic, emergency GP?

My guess is if you were to call 111 & explain you have history of hyper & feel very unwell with symptoms suggesting levels are now dangerously uncontrolled they would likely suggest you visit A&E.

What you need is an urgent thyroid function test as carbimazole dose likely need to be increased.

[Mumoftwomonkeys in reply to PurpleNails]

I managed to check and my heart rate is fine, my heart rate has never been high, no matter how ill I am with hyperthyroidism. Until now, I never lost weight with it either, but am now.

I've borrowed a machine though, so will keep checking. I found my old dosage too, originally they put me on 40mg of carbrimazole, so there's no way 10 and 25 are doing anything to help right now.

I contemplated 111, but without the high blood pressure, and as my blood results often don't correlate with how ill I'm feeling, I didn't have the guts to call. I'm going to chase the private tests tomorrow and go from there.

Did you find propranolol helped you??x

[PurpleNails Administrator in reply to Mumoftwomonkeys]

I only had mild palpitations when diagnosed but was given high dose of propranolol, then it was stopped abruptly by specialist, which should never be done with this medication. I had quite severe migraines. After this the GP put me back on propranolol permanently for migraine relief. I did very gradually reduce quite a low dose but I think I’ll always be taking it.

I frequently had high blood pressure too, but not high enough to require medication until recently, My FT4 & FT3 levels are kept mid range. It took 5 years of treatment for TSH to start responding to low levels.

[Shostakovich1 in reply to Mumoftwomonkeys]

I found propranolol very helpful with dealing with some of the symptoms of hyperthyroidism especially anxiety

[Ontherun81]

Hi mine too has deteriorated. Go back to your private test people and ask what are they going to do about messing up the test this is important to your health. You've paid you want a result. They should send a new test. Either ask for a referral to an Endo or go private from a list on thyroid UK. Don't leave it or take no for an answer. NHS rarely test T3. I used to roll over and not push things but not anymore. You'll get great advice from here. I wish I'd of pushed sooner and got advice.

Best wishes