Treatment decision Hyperactive

[Hugoo]

Hi

I have a telephone consultation due in 2 weeks

I have been diagnosed with Overactive Thyroid since 2019. On Carbimazole 2.5 mg 3 times a week.

I have a ‘hot’ nodule on each lobe.

On this consultation I have to decide ongoing solution or go back onto GP care for future blood tests and care.

Since my last contact with Endo in February I have had a 72 hour heart monitoring as my rate was running fast. The diagnosis was Thyroid Induced Sinus Tachycardia. This has stared to make me wonder if I should proceed with RAI or surgery.

I have just had bloods done for this June appointment but no results yet.

My February bloods were:

TSH 3.69 ( 0.35-5.00)

T4 17 (7.00-22.00)

T3 4.3 (3.80-6.79)

RAI mainly worries me as I have had Colon Cancer in 2012.

Does some of your thyroid remain if you have a low dose of radioactive iodine meaning you may not go completely under active?

Thank you for looking and any advice or thoughts you may offer.

[SlowDragon Administrator]

Feb results

FT4: 17 pmol/l (Range 7 - 22)

Ft4 is 66.67% through range

But

FT3: 4.3 pmol/l (Range 3.8 - 6.79)

Ft3 only 16.72% through range

When were vitamin D, folate, ferritin and B12 levels last tested

What vitamin supplements are you currently taking

[Hugoo in reply to SlowDragon]

hi

Thank you for the information

Iron and vitamin levels haven’t been done for a couple of years.

I take the liquid Feraglobin as it really suits me. Better you vitamin D with K2 and a vitamin c chewable tablet.

[Hugoo in reply to SlowDragon]

sometimes I take Better You B complete oral spray

[SlowDragon Administrator in reply to Hugoo]

next step get Vitamin levels tested

You need full iron panel test 3-4 times a year if taking iron supplements

Iron is extremely toxic in excess

Medichecks do one if GP won’t

Stop iron 5-7 days before test

Test early morning, only water between waking and test

[Hugoo in reply to SlowDragon]

Thank you. Will do this.

[MrsStacCole08]

hi Hugoo

I had a hot nodule on my right lobe and it was a fast growing one too

And I had thyroid induced sinus tachycardia also and was given carbimazole and beet blockers

I’m on Levothyroixine now which is a slow process to getting levels stable

So I was offered RAI which I turned down and went for surgery

So I had my entire right lobe and the middle section removed in September 2022

My left lobe is still dormant and the levo is taking its time settling in and working for

I put on a stone in weight but I was only 8.5stone and I don’t eat nowhere near what I used to so it’s purely down to the medication and j now being hypothyroid

Doctors have advised it could take a year to stabilise so I need to continue with eating healthy and clean and gym visits and exercise

I take iron and selenium which helps massively

I don’t regret surgery at all and I recommend it for thyroitoxiciosis

RAI scared me and still does

My surgery was a complete success and I was very lucky I did not need a drain and I’ve healed beautifully

It’s a slow road to recovery but it’s worth not having the awful hyper symptoms

All the best

Stacey

[Hugoo in reply to MrsStacCole08]

Thank you so much for replying. I really haven’t thought too much about surgery as it is always RAI that is mentioned. As I have a nodule on both lobes I wonder how much of my thyroid I would keep. It would take away the worry of radioactive but the thought of surgery is also scary. What a choice !

Did your whole self feel different when no longer Hyperthyroid? Right now I feel restless and on alert all the time.

How long was the operation?

Thank you again

Debbie

[MrsStacCole08 in reply to Hugoo]

hey

Once I had the surgery I instantly felt better calmer & relaxed

No longer on edge and jittery

I’m struggling with the weight gain but that’s it

I’d rather a little bit of extra weight to be calmer and no more heart palpitations, the heart stuff was the worse part for me

Scared the crap out of me each and every time I had them and it was every day and night and I hated having either zero energy or running around like a demented cat

I reckon you would loose the lot if you have both sides with hot nodules.

My surgeon was pretty instant on the RAI but I said no I want it removed and he agreed and Endo also agreed it was the best decision to make as it was getting worse as the weeks went on

It was growing so fast (nearly 6cm) and it was effecting voice and I could not sleep on my right as it effected my breathing

For me surgery was the best way forward no way I would have gone for RAI but that’s me

My biggest piece of advice is be your own advocate don’t wait fight for what’s best for you

Push for what you want !! It’s the only way

KR

Stacey

[Hugoo in reply to MrsStacCole08]

Thank you

Sounds promising

[pennyannie]

Hello Hugoo :

I had RAI thyroid ablation for Graves Disease back in 2005 - a treatment I deeply regret but knew nothing back then and not advised of any adverse side effects.

As I understand things the dose of RAI not as exacting as one might think and this is a toxic substance which once ingested slowly burns out and disables from within the body and ultimately the thyroid is fully disabled and burnt out in situ, resulting in the patient becoming hypothyroid and a prescription for T4 - Levothyroxine is deemed the appropriate treatment option.

I read RAI is also taken up, to a lesser extent, by other glands and organs within the body and have experienced symptoms for which the NHS have given me no answers - details on my profile page - just tap on my face alongside this reply to read my bio - if you wish.

We now have the following research paper regarding RAI and I am one of these patients :

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

and I seriously do not understand why this treatment is still offered in a health care setting :

Surgery is much more precise and ' cleaner ' though a much more expensive treatment.

[Hugoo in reply to pennyannie]

Hi

Pennyannie I always read your posts and your story has stopped me in part having further treatment up to now. I have tolerated Carbimazole really well but feel after 4 years not doing so well as I was. I really do not know what to do. I will read the article link so thank you for that. If I have surgery I know I will be hypothyroid but at least no worry about radioactive after effects.

Thank you again

Debbie

[PurpleNails Administrator]

Your FT3 is quite low in range & TSH could fall and still be well in range.  

2.5mg X 3x per week is a tiny dose & I think you might not need it at all. Discuss with your specialist. 

If you find your levels gradually rise - then you might need to stay on a dose every 3rd day.

 I have nodule and was discharged to GP for monitoring as specialist said they would only “keep me on the books if I was to have RAI soon”. 

Ask the specialist to specify in discharge letter how often you should be monitored as I was verbally told every 3 months but nothing was set out in letter.  So the GP has agreed to test when I chase up, but I have the feeling they want to extend the time.

 If you are well on carbimazole there no reason to change.  You take an extremely low dose. 

RAI causes destruction to thyroid,  The full affect takes months but if the thyroid remains hyper by about 6 months the treatment is repeated.  In about 10% of cases. 

In theory a small amount of functioning thyroid should remain but it almost always isn’t enough to produce enough hormone. 

RAI doses are fixed in UK and not calculated as the accuracy it not greatly improved.

The iodine is mostly absorbed by the working thyroid so in theory your hot nodules should be the target, but this means the healthy thyroid will be affected too.  

Have you heard about RFA - Radio Frequency Ablation?

This is less invasive procedure and will treat the nodule preserving the thyroid. 

Royal Berkshire & UCLH hospitals preform it.  - Others have battled for referrals including from outside the area, but you will have to arrange your own travel. Often initially doctors will say - it’s not available / there’s no funding stream for it, it’s not a suitable treatment.  but having the information and persisting can secure a referral.

This post has information about RFA

healthunlocked.com/thyroidu...

The original poster travelled to Italy & paid privately for the treatment.  

[Hugoo]

Hi

As always thank you for replying and all this information. You have mentioned the RFA to me before and I am in the South of England. At the moment with telephone consultation it is so hard to ask Endo about it without them saying only two choices available. I wonder if I have the stamina to ask for a possible referral. Surely it makes sense to keep the thyroid if no Autoimmune.

Will look at all your information as I have to be ready for early June telephone consultation.

Thank you again

[indiesnow]

Hi, I have been taking 5 mg carbimazole daily for 3 years, my bloods are bang in the middle of normal and I feel well, I do not have any experience of RAI and as long as I feel fine I will stay on carbimazole, the evidence now is it's ok to be on long term carbimazole but you must check your bloods regularly.

[Hugoo in reply to indiesnow]

hi

Thank you for your reply. I’m so glad to hear you are doing well on Carbimazole. I have been taking it since March 2019 and generally been ok. Just lately haven’t felt as good. Have you read any particular information on long term Carbimazole that I could quote to the Endocrinologist ?

Thanks again

[pennyannie in reply to Hugoo]

I thought you had this research paper - apologies :-

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

[Hugoo in reply to pennyannie]

thank you

[pennyannie in reply to Hugoo]

Good morning ;

Have your eyes been affected at all - were they dry, watery, sore and possibly light sensitive - if so even if now relieved please ensure whatever drops, sprays, lotions or grease that you use are all preservative free - even those prescribed by the NHS.

If your eyes are involved at all - this is another reason why RAI should not even be on the table as a treatment option as it will likely exacerbate all these symptoms.

( just speaking from experience )

[Hugoo in reply to pennyannie]

Hi

Thank you again for your kind words.

I don’t have any autoimmune issues but certainly if I did these would be important issues to consider.

Thank you again