Newly diagnosed : Hi. I’ve just been diagnosed... - Thyroid UK

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Thatravers profile image
34 Replies

Hi. I’ve just been diagnosed with Hyperthyroidism. I’ve been prescribed 80mg of propranolol x3 a day and one carbimazole a day. This seems like a high dose of propranolol. Is this right?

Btw, this has all just happened - I’ve only seen a GP and I’ve no idea what’s going on!!

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Thatravers profile image
Thatravers
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34 Replies
lau99 profile image
lau99

It was quite a long time ago now that I took any propranolol (I think early 2017?) but that does sound fairly similar to the dosage that I took :) I think it depends on how high your heart rate is at diagnosis, but eventually I ended up coming off of it completely; I think I was only on propranolol for a couple of months before the carbimazole alone brought my heart rate down to a comfortable level. Hope this helps x

Thatravers profile image
Thatravers in reply tolau99

Yes, that’s reassuring. Thanks😊

greygoose profile image
greygoose

Be careful. GPs know very little about thyroid. If you haven't done so already, get a copy of your blood test results, with the ranges, and post them on here. GPs often misdiagnose hyperthyroidism.

Thatravers profile image
Thatravers in reply togreygoose

Thanks. I’ll post the results in the morning.😊

jimh111 profile image
jimh111

Going by the NHS website it seems a high dose for hyperthyroidism.

Thatravers profile image
Thatravers in reply tojimh111

I haven’t taken any yet. Will cal tomorrow and check with GP.

SlowDragon profile image
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto’s (Autoimmune hypothyroid);

And TSI or Trab antibodies for Graves’ disease (Autoimmune hyperthyroid)

Also EXTREMELY important to test vitamin D, folate, ferritin and B12 for BOTH Hashimoto’s and Graves

Come back with new post once you get results

Propranolol can’t be prescribed for anyone with asthma

Thatravers profile image
Thatravers in reply toSlowDragon

That’s so helpful. I’m so happy I found this site. I’ve just finished a round of skin cancer treatment and got bloods done as I’ve lost some weight and heart has been racing - this is a bit of a blow when I was hoping to be feeling better. Im hoping for access to an endocrinologist. Think my bloods are online. If so, I will post tomorrow.😊

Homeboy2020 profile image
Homeboy2020

When i was diagnosed i was put on 4 x 10mg per day of propranalol (to slow a racing heart) plus 30mg carbimazole per day. It depends on your results. Im now off the propranalol and down to 15mg carbi, pending the next set of blood test results

Homeboy2020 profile image
Homeboy2020 in reply toHomeboy2020

Eventually confirmed i have Graves so no clue as to next steps until sept when i see my Endo

Marz profile image
Marz in reply toHomeboy2020

How was the Graves confirmed ? Do you have the results ?

Homeboy2020 profile image
Homeboy2020 in reply toMarz

I had the antibodies test that confirmed i had raised levels of the antibodies.

Marz profile image
Marz in reply toHomeboy2020

Which anti-bodies ? We see members who are not correctly tested for Graves antibodies ...

Homeboy2020 profile image
Homeboy2020 in reply toHomeboy2020

Having said that, this was based on thyroglobulin antibodies being slightly high (120 versus <115 spec) plus a follow up test

SlowDragon profile image
SlowDragonAdministrator in reply toHomeboy2020

That’s not Right antibodies test for Graves Disease

You need TSI or Trab antibodies tested

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Homeboy2020 profile image
Homeboy2020 in reply toSlowDragon

Yep, had all that for the follow up. Hence the diagnosis.....

Thatravers profile image
Thatravers in reply toHomeboy2020

I’m waiting for a doctor to come back to me

Thatravers profile image
Thatravers in reply toHomeboy2020

That sounds positive. How long ago did all this start?

PurpleNails profile image
PurpleNailsAdministrator

Hello and welcome

The propranolol 80x4 is a dose exceeding the guidance on NHS website

nhs.uk/medicines/propranolol/

For too much thyroid hormone (thyrotoxicosis), the dose is 10mg to 40mg taken 3 or 4 times a day.

So you are right to query it with your GP. Did the GP say the propranolol will be temporary? Propranolol is the preferred beta blocker as it has a very mild anti thyroid affect. You will need them to help manage your symptoms whereas the carbimazole will reduce the production of new hormones. The existing hormone must work through your system.

I was taking 40x3 and was instructed to stop them after 10 weeks. It should always be stopped gradually. I’m my case stopping abruptly caused my FT3 to spike disproportionately and for my occasional migraines to be triggered and I have been on a lower dose of them ever since.

So plan for a very gradual reduction at the outset to avoid any potential issues.

Thatravers profile image
Thatravers in reply toPurpleNails

Tanks. I've sorted this out now. It was a misunderstanding.

Just now need to find out what is going on with me.

Thatravers profile image
Thatravers in reply toPurpleNails

I actually have no idea whether this is temporary/ will be lifelong. I actually don’t know what’s going on!

PurpleNails profile image
PurpleNailsAdministrator in reply toThatravers

Do you have a revised dose now?

Also were you able to access any results?

It might be the case the GP has to refer you to a specialist who will carry out the Antibody test, this usually takes some time, so you have a opportunity to read up and learn all you can.

Thatravers profile image
Thatravers in reply toPurpleNails

Sorry for delayed reply. I’m just getting to grips with the site!

Yes. I’m prescribed 80mg of sustained release propranolol with 3x10mg of carbimazole. Does this sound right? Can the gp not carry out antibody test?

PurpleNails profile image
PurpleNailsAdministrator in reply toThatravers

It does sound right. I have not used sustained release. These pills must be swallowed whole not broken or crushed, so you will need new strength when you are ready to stop taking them.

Its beneficial to split the daily dose of carbimazole for the first few months, but not necessary once stable & likely to be lowered. Your specialist should review your levels and dose you by FT4&3, don’t allow them to be guided by TSH alone.

From what I have read on here I believe GPs are permitted to carry out antibody test, but most practices prefer to leave it to specialist to arrange.

Thatravers profile image
Thatravers in reply toPurpleNails

Great. Thanks. Sorry - what do you mean by “split the daily dose”?

PurpleNails profile image
PurpleNailsAdministrator in reply toThatravers

You have 30mg total carbimazole per day but it’s split into separate doses?

Thatravers profile image
Thatravers in reply toPurpleNails

Oh, I see. Yes, 10mg x3

PurpleNails profile image
PurpleNailsAdministrator in reply toThatravers

I was easily confused with medication and would forget to take it on time or mistakenly take an additional dose before I realised. I’d recommend a pill box organiser, so the medication is planned out. you can then see if you have taken the medication. I also use a app on my phone which helps the timings.

Thatravers profile image
Thatravers in reply toPurpleNails

Great advice. Thank you. 😊

pennyannie profile image
pennyannie

Hello Thatravers and welcome to the forum :

OK - yes you will be confused as to " what's going on " as you are with an overactive thyroid and it can affect physical, mental, emotional, psychological function, your inner central heating system and your metabolism.

You maybe tired but wired and unable to turn off :

Eating for England but loosing weight :

Mentally frazzled and an emotional mess :

Your metabolism is running too fast for you to keep up and depending on your blood test levels above range some symptoms are considered life threatening.

There are 2 main reasons why you have become hyperthyroid Graves or Hashimoto's - both autoimmune diseases caused by your immune system going into overdrive.

With Hashimoto's the hyper phase will be transient and you do not get prescribed Carbimazole.

So, it is imperative that you have confirmed with the medical evidence that you are positive for the Graves antibodies - either TSI ( stimulating wording ) or TR ab ( blocking wording ) :

I read we will be waiting for an update tomorrow - so in the meantime you might like to dip into the Elaine Moore Graves Disease Foundation website as this is the most all compassing website on this poorly understood and badly treated autoimmune disease.

I'm with Graves and post RAI a treatment - a treatment I deeply regret and now manage lingering Graves, thyroid eye disease and hypothyroidism.

Thatravers profile image
Thatravers in reply topennyannie

Hi there. Thank you for your reply. It's a lot to take in. I'm going to post the latest - one tick.

pennyannie profile image
pennyannie

OK - but you now can see physical symptoms of your neck being swollen and your throat is feeling constricted, so this might be a goiter and this can be caused by an autoimmune thyroid disease, so it's still important to test for the antibodies involved.

I have no experience of this, so would suggest follow the doctors advice and play for time, until you see a specialist.

Leelee40 profile image
Leelee40

Hello am new here, i have just been diagnosed with Graves Disease, had the antibodies test, my thyroid lvl was 45, i was put on Carbimazole 3x day and 3x 10ml of propranolol. Had a blood test 2 weeks later & thyroid lvl was 33 had another blood test Friday so am waiting for that result.

pennyannie profile image
pennyannie in reply toLeelee40

Hello LeeLee and welcome to the forum :

If you are looking for answers to your above comments it would be better for you to start your own post under your own heading and then more form members will see it.

We can help and advise you but very few people will see this at the end of somebody else's post.

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