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Thyroid UK
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Carbimazole

If I buy a lot of carbimazole would that help me? Results = hyperthyroidism

Thankyou

Ferritin 23 (15 - 150)

Folate 1.9 (2.5 - 19.5)

B12 188 (180 - 900)

Vit D 29.3 (25 - 50 deficiency)

TSH 6.7 (0.2 - 4.2)

FT4 12.9 (12 - 22)

FT3 3.1 (3.1 - 6.8)

45 Replies
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Where are the results that indicate hyperthyroidism?

All I can see is that you may have iron deficiency anaemia and B12 deficiency, for which you probably need B12 shots, folic acid and iron tablets.

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TSH 6.7 (0.2 - 4.2)

FT4 12.9 (12 - 22)

FT3 3.1 (3.1 - 6.8)

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Cjkl,

Those results indicate hypOthyroidism. Quite clearly.

You need thyroid hormone - probably starting with levothyroxine.

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Thankyou I take 25mcg levo

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Cjkl,

You need an increase in levothyroxine dose. For example, increased to 50 micrograms, after six weeks re-test, then more than likely 100 micrograms and re-test.

Carbimazole is an anti-thyroid medicine that stops your thyroid from making thyroid hormone. You definitely do not need that.

You very much also need to address your other issues.

Regarding B12 and folate - I urge you to post over on the Pernicious Anaemia Society forum:

healthunlocked.com/pasoc

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Are you diagnosed hyperthyroid? If so what have you been prescribed and why would you want to buy your own carbimazole?

What are your latest thyroid test results (with reference ranges)?

What is your GP doing about your dire vitamin and mineral results?

Did you have Vit D tested?

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TSH 6.7 (0.2 - 4.2)

FT4 12.9 (12 - 22)

FT3 3.1 (3.1 - 6.8)

Thankyou I have symptoms of weight loss and insomnia which my endo says are hyperthyroid? I was diagnosed hypothyroid in 2011

I have B12 injections and vit D tablets and iron tablets and folic acid

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So you know you are hypOthyroid, so it's not possible to become hypERthyroid. What makes you think you are?

You are undermedicated and need an increase in your Levo. What dose are you currently taking?

Have you had thyroid antibodies tested? Were they raised? Do you have autoimmune thyroid disease aka Hashimoto's? That might account for your weight loss and insomnia and symptoms and test results can fluctuate with antibody activity. Endo is probably a diabetes specialist (most of them are) and doesn't know how to treat hypothyroidism and doesn't know about autoimmune thyroiditis.

How long have you been on your supplements, exactly what are you taking and are you levels being monitored?

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Thankyou my GP and endo say due to symptoms of weight loss and insomnia I am hyperthyroid. I take 25 mcg levothyroxine diagnosed in 2013. TPO antibodies 6000 (<34) TG antibodies 655.3 (<115)

I have been taking iron 3x 210mg for 7 years, 5mg folic acid once a day for 3 years, vit D 800iu for 4 years and B12 injections every 3 months for 4 years

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As I said, you are NOT hyperthyroid.

Both your endo and GP are idiots. RUN AWAY.

You have Hashimoto's. Please read through this similar thread from today healthunlocked.com/thyroidu...

Your Hashi's has trashed your nutrient levels. You appear to have an absorption problem to have been supplementing those doses for so long. However, Vit D won't increase with 800iu daily. See other thread, you need loading doses. SlowDragon can advise how to address gut/absorption/Hashi's.

Now find a new GP and under no circumstances touch carbimazole.

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Cjkl, it’s a lot easier for us all if you put all the info in your first post rather than make us drag it out of you. :) That said, I know when you’re feeling rubbish it can be hard to know where to start.

Next question then. How old are those results you posted? Are they recent?

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Sorry I didn't know where to start and my brain isn't really working

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I know. xx How old are those results? I’m puzzled by how low your B12 is if they’re recent results and you’re having B12 jabs.

So are they old results?

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They were taken Dec 2017

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Right.

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Well, then you urgently need B12 more often than you’re getting it. And folic acid. And much more levothyroxine than you’re currently on. And probably Vitamin D.

I’d be asking my doctor to investigate whether I have gut problems if I were you - whether there’s a possibility of coeliac disease or Crohns.

Although my first thought would be to find a new doctor - one who cares enough to treat the obvious symptoms you have!

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I had hyperthyroidism, I took propranolol and carbimazole.

I am not satisfied with GP and endo care in the hospital.

I tried Chinese herbal therapy and acupuncture as well as diet.we have to cleanse the body of toxins. The liver, the spleen and the intestines are important. stop drink milk jogurts and milk products ,bread sugar I feeling 100% better

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Ah. That’s not hyperthyroidism. That’s hypothyroidism. Don’t buy carbimazole, whatever you do. Wrong medication!

What does your doctor say about these results?

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Thankyou my GP and endo insist I try carbimazole for the insomnia and weight loss

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Erm, wow. That’s incompetence.

Insomnia and weight loss can be symptoms of under active thyroid too.

But I also can’t believe that they’re ignoring your woeful B12 and folate and iron levels.

Is there another doctor, with perhaps a couple more brain cells, you could see?

And why did you refer to buying carbimazole? Where do you live - presumably not in the UK?

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Thankyou I live in the UK, was looking to get some through the internet as advised by GP

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What the hell? No UK GP would tell you to buy carbimazole off the Internet.

He wasn’t suggesting liothyronine (T3) by any chance?

Even that would be worrying, but at least it would have been the right direction.

Are you sure this person is legally a doctor?

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Thankyou T3 has never been suggested

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Then this makes no sense. The advice you have been given is wrong. I’d be looking to make a complaint about both your GP and your endo. They are being negligent.

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Ok thankyou I will

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Both your endo and GP are idiots and have given you extremely dangerous advice. Run away as fast as you can. Find a new GP and endo.

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I’m really struggling with this.

If your GP or endo really thought you needed Carbimazole, there is no reason why they would not simply prescribe it. However, usage needs to be carefully monitored, with frequent blood tests and endo appointments.

Carbimazole stops production of thyroid hormones. Given that your FT3 and FT4 results are already at the low end of the range, why would you want to reduce your levels even further ?

How much were you planning to take ?!

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Thankyou endo and GP decided I would benefit from it

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Are you sure you got the name right? I know what it's like having brain fog, one can get things wrong. Did you actually see it written down?

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Cjkl,

As Jazzw has said, both insomnia and weight loss can very definitely occur in hypothyroidism.

When I was diagnosed, I was falling asleep for a while, waking up and unable to get back to sleep for hours. Regularly.

When I was treated, with levothyroxine, one of the first things I noticed was better sleep.

In hypothyroidism, digestion is affected, sometimes seriously. Inadequate stomach acid and inadequate digestive enzymes can result in poor absorption even if your diet were otherwise good. If you are not digesting and absorbing properly, you can lose weight. The worst aspect is that some people lose muscle mass (including heart muscle) but it doesn't get noticed because they put on weight - in particular retaining water.

Putting you on carbimazole is madness. I just cannot see it as anything else. (Though I don't have two letters to rub together as qualifications.)

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You are folate deficiency and borderline vitamin B12 deficient so both of these need fixing. Might be an idea to look at the pernicious anaemia / B12 deficiency forum.

I have Graves and when the endo put me on carbimazole he told me that you need to be on it for a short time only (less than 2 years) as it’s not good for you. Whilst I was on it he monitored all thyroid levels regularly and adjusted the dose accordingly. I certainly wouldn’t be happy buying lots and using it unsupervised (but maybe I’ve misread your intentions)?

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Thankyou my GP and endo insist I try carbimazole if I buy it online and see how I go

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Why are you buying it online? Why aren’t they prescribing it? Will they monitor your usage?

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No no no. Please don’t. They’re wrong!

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I know I’m not medically qualified like your ‘endo’ and ‘GP’ but to be honest if you do go ahead and follow your endo and doctor’s supposed advice and buy carbimazole then at the least you will make yourself very ill and at the worst you could probably kill yourself. It’s up to you but prepare for the worst if you decide on carbimazole- besides what sort of a doctor tells you t buy carbimazole via the internet? It’s cheap and easily obtained - for people who are hyperactive. You are hypo!

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I’m sorry I know many gps and endos are idiots but I really can’t believe that 2 doctors would ‘insist’ that someone tries a drug but then refuse to prescribe it and tell you to buy it on the internet. Something has been massively mis communicated.

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cjrsquared,

We have seen it specifically with liothyronine (T3) due to extremely inflated cost - but not carbimazole. Something is very odd here and we need to get to the bottom of it.

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I agree, if liothyronine I could understand but carbimazole?

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cjrsquared,

Most especially because of the possible serious consequences of carbimazole - neutropenia and agranulocytosis.

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I guess it might work out cheaper online with a private prescription, than via a NHS prescription - depending on how much they charged for the private prescription. I’m in Wales, so our prescriptions are free anyway, but if this was a viable option, you’d think others would have mentioned it.

Regardless of this, with the numbers mentioned, it just doesn’t add up

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Valarian,

The NHS indicative prices start:

About £42 for 100 5milligram tablets

About £135 for 100 20 milligram tablets

bnf.nice.org.uk/medicinal-f...

Private prescription will not be less expensive (within the UK).

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I’m glad I live in Wales !

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Perhaps you need to get this in writing from the GP to check there has been no misunderstanding.

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Presumably your endo has written to your GP. I would ask for a copy of that letter. If possible, post it here.

You are definitely NOT hyperthyroid.

Do NOT take any Carbimazole.

Below is a link to the NHS info on having an overactive thyroid (HYPERthyroidism). As you can see, diagnosis is made because the patient has

LOW tsh, HIGH FT4 and HIGH FT3. You have

HIGH tsh, LOW FT4 and LOW FT3. You are the exact opposite of being HYPER. You have a classic case of an underactive thyroid (HYPOthyroidism).

nhs.uk/conditions/overactiv...

Although people who are hypothyroid often gain weight, some lose weight.

PLEASE CHANGE GPs. ASAP.

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Get an urgent appointment with another GP at the surgery. Can you take a supportive friend or family member along to tge consultation

It is not uncommon when severely hypothyroid to LOSE weight

Your vitamin levels are dire, your gut so severely affected because you are very under medicated and unable to absorb nutrients

Vitamins must be treated urgently, they are extremely low BECAUSE you are Hypothyroid with Hashimoto's also called autoimmune thyroid disease

Insist on testing for coeliac disease too.

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Also See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Detailed supplements advice from SeasideSusie on Low vitamins due to under medication on another post here

healthunlocked.com/thyroidu...

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