Hyperthyroidism and Graves’ disease, diagnosed July 2024.

[Diagnosejuly24]

I just need some advice on wether I need to take both medications camazol and propranolol together or which one is more important because I am told that I have to be on medication for life but those medication aren’t exactly cheap. I really need some advice please help. I wish whoever going through this hyper or hypo with good health.

[pennyannie]

Hello Diagnosejuly24 and welcome to the forum :

Can you please share with forum members your initial blood tests at diagnosis - so the TSH - Free T3 and Free T4 results and ranges plus which antibody was found in your blood stream probably looking like a TPO - or TgAB - or TRab- or TSI - or reading as a TSH Receptor antibody and a number and cut of value.

It reads as though you are being treated as with Graves Disease - is this what you have now been told you are dealing with ?

Graves is an Auto Immune disease that generally only gets diagnosed when the immune system starts attacking the thyroid and or eyes and said to be life threatening if not medicated and the medication is an Anti Thyroid drug - Carbimazole or Propylthiouracil - PTU for short.

All the AT drug does is ' buy you time ' while we wait for your immune system to calm back down again with hopefully your symptoms relieved.

If your heart is involved a beta blocker is also prescribed - usually Propranolol as this also slows down the conversion of the thyroid hormone T4 into T3 - as it is generally too high a level of T3 that causes the distressing symptoms.

What dose of Carbimazole and Propranolol have you been prescribed ?

The Carbimazole must be taken every day - some people split their dose evenly AM & PM around 12 hours apart -

The Propranolol can be split - 3/4 times throughout the day and taken before meals, and very much depends on the level of the dose prescribed.

With Graves there can be a mismatch between your brain and body - with your mind racing and in overdrive but with your body very weak with little strength or stamina - your body is in a ' heightened ' state - rest and be kind to yourself - as stress and anxiety are common triggers to the poorly understood Auto Immune disease.

Give the drugs a week or two and hopefully then your symptoms will be much reduced and when, and if, you feel like reading around - the most well rounded of all I researched is that of Elaine Moore - books and website - elaine-moore.com :

[Diagnosejuly24 in reply to pennyannie]

thank you

[Fruitandnutcase]

When I hadGraves back in 2012 I could only take carbimazole because I had asthma so I was started on the carb and just had to wait until the carb kicked in and things settled down - so on that basis it would look like carbimazole is the more important of the two.

Saying that I see you ae only 27 - I was in my late 60s back then which could make a difference - I don’t know.

I was treated by ‘block and replace’ which only took a year.

[Diagnosejuly24 in reply to Fruitandnutcase]

Thank you

[PurpleNails Administrator]

Once carbimazole has brought down high thyroid levels & you are stable & in range, propranolol can be slowly reduced.

Do not stop it abruptly. I was told propranolol was temporary to help with symptoms & to stop taking now FT4 & FT3 in range. I was on a fairly high dose & stopping it abruptly made me unwell.

If you do have Graves, which is autoimmune, it can go into remission but it’s likely you’ll need carbimazole long term.

I have a hyper nodule, so 1 side of my neck is swollen it’s not autoimmune. This is expected to be lifelong. This was confirmed with ultrasound & uptake CT scan.

[Diagnosejuly24 in reply to PurpleNails]

Thank you