Thyroid UK
84,405 members99,405 posts

Update after my doctors appointment re: over active but no thyroid

Hi everyone

I have just had my appointment with my doctor to talk about my thyroid blood test results

He said there was no need to alter my thyroxine but he has given me Carbimazole 20mg to take for 28 days, i have to take one at night and my thyroxine in the morning never at the same time

Then a month after i finish them i have to have another blood test

Is there a difference in result between keeping my thyroxine at 125mcg but taking the Carbimazole and just reducing my thyroxine dose instead?

Thank you for any advice or help

27 Replies
oldestnewest

Cloudwalker,

Can you post your TSH, FT4 and FT3 results and ranges and say how much Levothyroxine you are taking.

Your GP seems to be treating you with 'block & replace' which is a therapy for hyperthyroid patients, not for overmedicated hypothyroid patients. If you are overmedicated on thyroxine the dose should be reduced.

4 likes
Reply

Thank you for your reply my blood results were

Serum free T3 4.7 (3.50-6.50pmol/l)

Serum free T4 16.6 (10.30-22.70pmol/l)

Serum TSH Level 0.03 (0.35-5.50mu/l)

I take 125mcg of levothyroxine

1 like
Reply

Cloudwalker,

I suspect your GP thinks you are overmedicated because TSH is suppressed. Suppressed TSH doesn't mean you are overmedicated as long as FT4 and FT3 are within range, and yours are not even high in range, so you aren't overmedicated. Unless you feel overmedicated I wouldn't reduce dose from 125mcg because FT4 and FT3 will drop. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

If you had been overmedicated the right thing would have been to reduce dose. It's insane to prescribe Carbimazole which can cause considerable adverse effects including lowering white blood cells which fight infection instead of reducing Levothyroxine dose. I would make a complaint to the practice manager because your GP obviously needs some training on how to manage hypothyroid patients.

4 likes
Reply

Thank you i have requested a copy, it is so frightening we put our faith and trust in doctors to treat us right

I will print the email and get a appointment with a different doctor i think

I am worried about going though in case they have a go but i know i have to, this treatment is far from right

3 likes
Reply

Oh please............. what a donkey! Please don't take the carbimazole.

It was said in your previous thread, you can't be overactive as you don't have a thyroid.

The aim of a treated patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo and the article by Dr Toft which Clutter has mentioned states

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Email for a copy like Clutter suggests, print it then highlight question 6 to show your GP.

4 likes
Reply

Thank you i have emailed for a copy, i didn't think the treatment sounded right

I told him about the symptoms i still have

Tingling pins and needles in my hands

Weight gain

Foggy feeling in my head

Feeling tired and no energy some days worse than others

Feeling like i can't get air into my lungs quick enough

Dry mouth sometimes too

3 likes
Reply

You look like you could actually do with a dose raise. The tingling may be low B12. Have you had Vit B12, Vit D, Folate and iron tested?

2 likes
Reply

I asked the doctor about B12 being the cause and he said yes could be

But when i said about testing that and iron etc he just said i was not anemic from a blood test i had last year i think!!!

I even said i thought my medication would be raised and he just pointed at my blood test results

2 likes
Reply

I have written this phrase so many times! Change GP!!

3 likes
Reply

It is truly frightening that hopeless doctors like this one are left to use their vague knowledge of thyroid matters (half a day at medical school, I believe) on trusting patients and have no idea what health havoc they are creating. Does anyone feel, like me, that there should be an independent body to whom a patient can easily present these cases of medical negligence (without fear of repercussions from the practice concerned), so that extra training can be given to these doctors?

5 likes
Reply

Hennerton,

We should be able to report such things to the senior partner at the practice or the practice manager. There should be no repercussions on any patient reporting poor treatment. That GP is a dangerous menace to thyroid patients.

6 likes
Reply

Hennerton Clutter I was having this conversation with someone about 2 hours ago, in real life.

It increasingly feels as if there should be an independent, quick turnaround, '2nd look' NHS service where people can send along their results and questionable prescribing decisions, and, without attributing blame - request a 2nd look. People want the appropriate treatment and to move on - not to be mired in closed ranks.

2 likes
Reply

ITYFIALNCTT,

We should be able to ask another GP at the practice for a second opinion on results and/or prescription. Of course, you'd need to know the first GP's opinion was wrong or off to know you need a second opinion.

1 like
Reply

I agree that we should be able to ask for an automatic reconsideration by another GP at the same practice without any apprehension about consequences. However, given how long it can take some members to obtain an appointment, and then to book another one to query the decision of the first one - it would be good to streamline the process.

I've seen some very odd decisions over on the PAS forum - and with the blood test results that some people are reporting, they are at risk of developing some non-reversible consequences if the appropriate treatment isn't started as rapidly as feasible.

1 like
Reply

cloudwalker,

This from the Patient Information Leaflet for one UK make of carbimazole tablet (all the documentation is similar):

4.1 Therapeutic indications

Carbimazole is an anti-thyroid agent. It is indicated in all conditions where reduction of thyroid function is required.

1. Hyperthyroidism.

2. Preparation for thyroidectomy in hyperthyroidism.

3. Preparation for, and as concomitant therapy with, radio-iodine treatment.

4.2 Posology and method of administration

Carbimazole should only be administered if hyperthyroidism has been confirmed by laboratory tests

medicines.org.uk/emc/medici...

You, cloudwalker are NOT suffering hyperthyroidism. Nor are you preparing for thyroidectomy in hyperthyroidism (obviously - as you are NOT suffering hyperthroidism). Further, you are not preparing for radio-iodine treatment.

And most certainly hyperthyroidism has NOT been confirmed by laboratory tests. I'd go so far as to say it has been categorically ruled out by those tests. If your FT4 and FT3 had been high, even somewhat out of range, it would be effectively impossible to diagnose hyperthyroidism whilst taking 125 micrograms of levothyroxine.

Therefore your doctor is intending to use a medicine not licensed for the purpose intended, and flagrantly dismissing and ignoring a highly specific printed warning.

Your doctor utterly fails to understand how carbimazole works. It affects the rate at which a thyroid makes thyroid hormone. It has no impact on the thyroid hormone that comes from a tablet. As I understand, you have no thyroid! So there would be absolutely zero point in taking an anti-thyroid medicine even if you were massively over-medicated.

In my opinion, you are possibly slightly under-dosed. The low TSH is of no importance and certainly cannot be regarded as a more important or significant result than FT4 and FT3.

Your doctor deserves to be up in a court of law for this degree of misunderstanding. Looks to me like he is being paid under false pretences.

8 likes
Reply

Is it just me - or are some of the prescribing errors/decisions that have been reported recently positively alarming?

5 likes
Reply

ITYFIALMCTT,

Not just you.

It seems especially dreadful in the internet era when all the resources such as the Electronic Medicines Compendium, GP-specific websites, even many NHS sites, are available almost instantly, that these issues appear to be worsening. Of course, that might just be my perception, but we do see some frighteningly bad practice reported.

4 likes
Reply

ITYFIALMCTT,

I've been appalled by some of the recent posts where members have had high doses of Levothyroxine stopped because TSH is mildly suppressed and severely deficient vitamin and mineral levels marked no action necessary. This attempt to add Carbimazole instead of reducing Levothyroxine dose (if the patient had been overmedicated, which is debatable) is possibly the worst I've seen.

6 likes
Reply

Yes - and cases like this that have looked decidedly odd for some time (also involving Carbimazole): healthunlocked.com/thyroidu...

Given how few people must find their way here to this forum - I have to wonder how many similar decisions are passing unnoticed every day - and what percentage it represents because it feels ludicrously high.

3 likes
Reply

ITYFIALMCTT,

That member is being treated with Carbimazole for hyperthyroidism. Carbimazole is being titrated down & I think she may be passing out of a transient Hashitoxicosis phase.

2 likes
Reply

Thank you everyone for all your information and advice, i am definately not taking the Carbimazole and getting a appointment to see another gp as soon as possible

The side effects of this medication can be really serious from what i have read, it is shocking and unbelievable that it can be used in inappropriate cases

7 likes
Reply

Phew! :-)

2 likes
Reply

It would be good for Cloudwalker to show this entire thread to the practice manager, as it shows very clearly that internet support forums are vital for correcting mistakes made by GPs and should not be derided by the medical profession and considered to be full of incorrect advice.

5 likes
Reply

Carbimazole prevents iodine from combining with inactive hormones IN THE THYROID to create active hormones....but you have no thyroid ?? It doesn’t work on stored thyroid or tablets, which is why some hyper patients take a high dose of carbi every day to block their own production completely, in parallel with a dose of levo which gives them a predictable dose of thyroid every day.

Is it possible you have some thyroid gland remaining ?

Whether your (apparently in-range) thyroid levels need to be reduced at all is another matter entirely.

1 like
Reply

I had my thyroid completely removed last march so i shouldn't have any left

Its good to know how the medication works i can take that information with me when i see my gp

Reply
Reply

Thank you i think i will print a copy and take it with me, i am hoping to get an appointment for tomorrow

Reply

You may also like...