Hyperthyroid/Thyroid Nodules/ Stopping Carbimazole

[Hugoo]

Hi,

I am Hyperthyroid, no antibody problems just nodules overproducing.

I last posted 7 months ago on having to make a decision to stop Carbimazole and have RAI. Covid delayed this decision but I have a telephone appt with Endo later this month.

Had bloods done 10th August and having more in 2 weeks.

TSH 2.48. (0.35-5.00mu/L

T4 10.5 ( 7.00-20.00 pmol/L

T3 4.1 (3.80-6.70 pmol/L

I’m on 5 mg Carbimazole 3 times a week.

Not feeling too bad but have episodes of a feeling of throat closing up and feeling like a lump at top of throat. Also sometimes have had breathless problems. This may be anxiety though.

I’m wondering if anyone would know if I stopped Carbimazole would I ultimately end up Hyperthyroid again , would the nodules overproduce again. Is there any chance of some sort of remission?

If not I am going to have to decide on RAI as that would be only way forward unless I remain on Carbimazole under care of a Nurse. However unsure of long term affect of that.

Thank you for your time again.

Best wishes.

[PurpleNails Administrator]

I would say you need a ENT referral and a scan to confirm the nodule/ swelling is the cause of your breathing difficulties and if treating with RAI will resolve it.

Autonomously function nodules don’t go in remission in the way Graves might.

You are on a very low dose already but given your TSH is above 1 and the levels fT4 & fT3 are lower half of range I would seek to tweak it downward until you are on the lowest dose possible but within the range.

Hospitals often give out leaflets about treatment from the British Thyroid Foundation one of their leaflets includes this

Can I take CMZ or PTU long term?

In theory there is no reason why not, provided your thyroid gland remains well controlled. It will initially involve regular clinic visits and blood tests every six to 12 months, under the supervision of a specialist, as doses may continue to need to be adjusted. Once you are stable on a low maintenance dose you may be discharged for follow-up by your GP. You will, however, remain at risk of side effects. Many people feel that radioactive iodine is a more straightforward solution.

btf-thyroid.org/antithyroid...

[Hugoo in reply to PurpleNails]

Thank you again PurpleNails for your always informative reply. I will ask for dosage to be lowered again. Although I will probably go with RAI eventually I don’t think I will get to see Nuclear medicine any time soon with things as they are.

[purple64]

As far as I know it’s possible to take carbimazole long term. The last time I asked I was told that there was no proof that it cannot.

[Lalatoot]

I was on carbimazole for 5 years. Came off it twice and became hyper each time after a few months.

I never felt well on the maintenance dose and so I had RAI in 2015.

Some folks stay on carbimazole long-term.

[Hugoo in reply to Lalatoot]

Thank you

How are you feeling now after RAI ?

It is a difficult decision.

[Lalatoot in reply to Hugoo]

It wasn't a difficult decision for me for 2 reasons

I never felt well

My endo was very much of the opinion that you could not stay on carbimazole for ever.

I haven't regretted it. I would say though that Ft3 should be monitored as well as ft4 following RAI. It wasn't until I started taking a combo of levothyroxine and liothyronine that I began to feel really well.

[Hugoo in reply to Lalatoot]

Thank you I have made a note of this and will ask the question if I would be able to have same combination offered to me if needed.

[Lora7again]

I have a multinodular goiter and I have taken PTU in the past to lower my levels. Your levels look too low to me .. how are you feeling? I was actually overdosed by my useless Endocrinologist who did not monitor me properly so my TSH was 9.

I have decided against RAI or having my thyroid removed because some women struggle to get the proper treatment afterwards. Elaine Moore had RAI and regretted it so she started a support site for other sufferers. Some people who have RAI do ok and not many of them post on this site because they feel well. The only time I would consider having my thyroid removed is if it became too big or cancerous and I have regular ultrasounds to monitor it. At the moment I am on my second remission and I feel well. A lot of people can go into remission for years and also I know some people who have been on Carbimazole for 10 years and are ok.

Here is a link to Elaine's site there is a lot of information on there and she helped me to get diagnosed when my GP thought it was the menopause.

elaine-moore.com/

Just to add I have had this for about 12 years now and if you are interested you can read my story on my profile page.

[Hugoo in reply to Lora7again]

Thank you Lora7. How low on Carbimazole can you go? May be on it a few more months yet until NHS back to routine clinics.

[Lora7again in reply to Hugoo]

You could go years.

[pennyannie]

Hey there Hugoo

If I could have my time over again and had the opportunity of staying on the AT drugs long term I would take that as my first option, as it leaves my options open.

RAI will eventually destroy and burn your thyroid out in situ, and this toxic sunstance can be taken up by other glands and organs within the body ;

Managing primary hypothyroidism caused by RAI can be challenging especially since currently the NHS routinely only prescribe T4 and monitor in primary care on just a TSH blood test which isn't sufficient detail when living without a fully functioning working thyroid.

Jusy look at the ever growing numbers of people 110K and counting, on the this website looking for help and advise.

I'm with Graves post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism and having to self medicate with full spectrum thyroid hormone replacement.

[Hugoo in reply to pennyannie]

Thank you. Always read your replies to others. Lots to think about again