Hyperthyroid symptoms and dosage?

[Sender1]

I was diagnosed with borderline hyperthyroidism in 2020 due to a toxic multinodular goitre and started on 5mg Carbimazole which I’ve taken since that time. I’ve never felt that the medication has completely controlled my hyper symptoms and still have bouts of sleeplessness and racing heart. My endocrinologist prefers to keep me on a low dose as I am prone to neutropenia. I take Propranolol occasionally for the racing heart issues.

My latest thyroid blood test taken on 7/3/24 showed:

TSH 0.63 (Ref 0.40 - 4.00)

T4 11.5 (Ref 9.0 - 19.00)

T3 3.8 Ref (2.6 - 6.0)

Test was done before 9am, fasting overnight and without medication taken that morning. Pathology report says I am euthyroid but I’d appreciate an opinion given my ongoing symptoms?

[J972]

Hi, those bloods - assuming they were done circa 9am, fasting - are more suggestive of an under active thyroid. Do you have previous bloods from when you were prescribed Carbimazole?

And, crucially, have you tested positive for Graves’ antibodies?

I’m tagging pennyannie for her invaluable input (hope that’s ok!). Your TSH is low in comparison to your frees. Are you on any other medication?

[Sender1 in reply to J972]

Tests were done at 8am fasting. I’ve been tested for Graves which I’ve been told by the Endo I don’t have. Recent Anti Tg tests are attached. I don’t have the TSH/T3/T4 results from 2020 but do have some from 2019 - from memory the results were similar. TSH on 30/01/19 was 0.19 Ref 0.4 - 4.0; T4 13.3 Ref 9.9 - 19.0; T3 4.5 Ref 2.6 - 6.0.

Anti Tg results

[pennyannie]

Hello Sender and welcome to the forum :

So, it is the toxic multi-nodular goitre that is causing these ' hyper ' type spikes in thyroid hormones and likely causing you the symptoms described, as your thyroid antibody readings are not showing any Auto Immune thyroid health issues.

All the Anti Thyroid drug does is semi block your new daily thyroid hormone production to try and off set the worst of the symptoms being tolerated.

At a higher AT dose - to alleviate your symptoms - the more thyroid hormones are blocked -

and the risk is, this will be at the expense of your T3 and T4 thyroid hormones staying in the range -

and when T3 and T4 fall too far through the ranges you will likely start suffering the equally disabling symptoms of hypothyroidism.

Your T4 is now at 11.50 and just 25% through it's range with your T3 at 3.80 and just 35% through it's range -

and we generally feel better with a T4 at least mid way through the range with a T3 tracking slightly behind the T4.

The Propranolol will also be down regulating your T4 to T3 conversion and I think I've read you must come off this drug very very slowly - though it seems you are not taking this on a regular basis - which maybe you should ?

There is an alternative to Carbimazole - Propylthiouracil ( PTU ) for short - might be worth asking about as the side effects may not be as damaging ?

What treatment has been suggested longer term ?

I'm going to try and contact another forum member who has a very similar health issue to you

  PurpleNails

[SlowDragon Administrator]

you also need vitamin D, folate, B12 and ferritin levels tested

So symptoms could be down to low vitamin levels

[Sender1 in reply to SlowDragon]

Thanks for your reply. I rarely take Propranolol- only if really needed but I’ve been thinking of using it on a more regular basis as it does keep the symptoms under control on a bad night, particularly palpitations and anxiety.

My endocrinologist wants me to stop take Carbimazole and wait and see what happens. If symptoms return (which I’m thinking they probably will) she is proposing radio-iodine treatment which I’m not keen on. I’d prefer to stay on medication but not sure if this is the best option for me in the long term. I’ll look into PTU as an alternative.

I’ve had my Vit D, magnesium and iron levels tested in the past and they’ve always been in the normal range. I’ll look into getting these tested again including the others you have mentioned. I’ve recently been seeing a naturopath who gave me Lugols. iodine drops as he thinks it’s a deficiency that causes a goitre and nodules but everything I’ve read about hyperthyroidism is contrary to this so I haven’t taken more than a drop here and there. Any advice would be welcome.

[SlowDragon Administrator in reply to Sender1]

Iodine is dangerous with any thyroid condition

Unless you are vegan you are highly unlikely deficient

Never take iodine without getting tested first

Genova offer best iodine test £80 approx

[pennyannie in reply to Sender1]

You might like to read the most recent research papers we have :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

Knowing what I know now - having had RAI thyroid ablation back in 2005 for Graves Disease - I would not recommend anyone to take or drink this toxic substance and with the research we now have - as above - do not understand why it is still a first line treatment option in what we presume to be a health care setting.