Over active thyroid - long term ?

[mumof2wife]

I was diagnosed with overactive thyroid in 2020, TTC so changed from carbimazole to PTU

Got pregnant nov 21 so had Regular blood tests and my thyroid regulated throughout my pregnancy 2021-2022

July 2022 it went over for 5 months and I felt like hell but not sure because I also had traumatic birth and felt so ill after losing 2l of blood and since then bloods been normal

I'm on 5mg of carbimazole but my consultant wants to keep me on them

In my notes I have graves but was never told this ?! I just think he calls me talks for a few mins and always says the same advice so because my bloods are normal I guess this is why?

I bet 5mg is so low but just wondering

Sounds like a maintenence dose. I'm also on 5mg. Graves disease is hyperthyroidism

Ah yeah I remember him saying that when he lowered it to 5mg

How long have you been on 5mg? Is it something you come off at any point?

Don’t ever come off carb unless your TRabs have been tested again and you are proven to be in Graves remission. You may need to push and push for this as some consultants are reluctant to re-test. It’s expensive apparently. If you’re taken off and not tested and are not in remission you will be back to square one very quickly. Your thyroid will go over active within a few months so all the work you’ve done will have been a waste of time. How often are you getting bloods done?

You can be on Carb long term. Don’t let your consultant bully you regarding your disease. It’s a fine balance. I have medicated myself for the last 2 years. If I’d followed my consultant I’d have been highly over medicated and likely have had my thyroid out unnecessarily. It’s an expensive disease for a consultant and they just want you back into the care of your GP. There is a useful Graves’ disease Facebook page. Have a look at that and start to get copies of your blood tests and learn how to read them.

This is very interesting thank you
I asked him a few months ago if I can come off and he said to keep going
As I'm also trying to come off AD I didn't want to do 2 things at a time but know I know this I'll keep on with them not that he's saying anything other than to keep going but it's been 2 years now and was just wondering

I used to have them weekly all throughout my pregnancy and then 2 weekly until she was 6 months old
Been moved to 8 every weeks now but that's been for ages
I have my next review on Feb 20th
My results have just come back for my last bloods and they are all available to me to read on my app it just says normal range

They aren't all here as some are GP and some are consultants but they are all around the same

It went up that high when my baby was born July 22 and took a while for my thyroid to return to normal but has been normal range for a long while

Only since last April. Not been off it. Bloods checked every 6 wks.

I was diagnosed in December and with Graves. Started at 15mg of carb and having blood tests every 2 weeks . Am now down to 5mg. Still waiting for an appointment with the endocrinologist. I feel better but am absolutely shattered much of the time, does anyone feel the same?

I feel exhausted and dizzy all
The time but I think it's down to my lifestyle
2 kids, one of which is a HARD work toddler, juggling work life balance
All my bloods have been normal for ages (which is good)
I had my review today with my Endo and he just said keep going on 5mg see you in 4 months
Still having 8 week bloods with Endo nurse to track it's all still ok

Am not surprised you are tired!

See if you can find a naturopath who specialises in autoimmune disease. Theres research floating around suggesting thyroid issues are related to a viral infection, and your immune system is genuinely attacking a virus, not randomly attacking organs for no reason. I’m not championing one therapy over another because both the mainstream treatment and alternative therapies can be done together, however I would say definitely do your own research if the doctors recommend you have your thyroid removed altogether

I've had graves for around 28 years two remissions neither lasted a year I'm on 35mg carbimazole a day and have been for awhile about ten years ago they said my thyroid should be burned out soon and I will go underactive what actually happened is my thyroid stormed a little then settled to this I'm on annual blood tests no-one cares