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Thyroid UK
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Hyperthyroid

Serum T4: 36 pmol/L (12 - 22)

Serum TSH: 0.01 mIU/L (0.27 - 4.2)

Free T3 is 9.6pmol/l

anti-tpo is negative.

Those are my most recent results, I think I have been hyperthyroid for over a month now, should I start carbimazole or wait for a while?

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ed2w

There's not much information here to base an answer on.

Have you been diagnosed with a thyroid condition and on any medication at all?

Have Thyroglobulin (TgAbs) antibodies been tested? TPO being negative doesn't actually rule out Hashimoto's.

Have TSI and TRAb antibodies been tested for Graves disease?

You need to be sure what you're dealing with before starting Carbimazole.

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Everything above is what I have been tested for. That's all I know. They asked me to start carbimazole to get it under control, my GP doesn't seem to know a lot about it so I was sent to an endocrinologist who gave me those tests and said I should start carbimazole, as he was a specialist I trusted him. Its impossible to get in touch with anyone who isn't my GP

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ed2w

So you don't actually know if you have been tested for TSI and TRAb which are the tests for Graves disease (overactive) to know if you need Carbimazole. Unless you know for absolute certainty that you have Graves then it's not a good idea to take Carbimazole.

As you don't appear to have been tested for TG antibodies, which could confirm Hashimoto's, then you don't know if you have that either. Hashi's is where antibodies attack the thyroid and cause fluctuations in results and symptoms. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. It's possible that your above results could possibly be a result of one of these Hashi's "hyper" swings.

So it's important to know exactly what's been tested, whether you are positive for TSI/TRAb or TG antibodies, before actually taking Carbimazole.

I think the first thing you should do is speak to your GP and ask him to find out whether any of these other tests have been done. If TSI/TRAb antibodies were positive, then that confirms Graves and Carbimazole is the right thing to take. If those were negative, Carbimazole is not the right medication.

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The tests I have the results for are the ones I have got, I haven't had anything else. See I thought the endocrinologist would know. I have been getting different info off everyone I ask but people are saying overactive thyroid can be fatal if untreated so I thought I should treat it. What would be the issue with carbimazole if it isn't graves. Thanks again

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ed2w

so I thought I should treat it.

Treat it as treating it yourself or our endo treating it?

See I thought the endocrinologist would know

If you are in the UK then, unfortunately for us thyroid patients, most endos are diabetes specialists and know very little about thyroid treatment. There have been quite a few posts on the forum recently where members have told us they have been started on Carbimazole. When we see their test results it becomes very obvious that they are not overactive but they have positive TPO/TG antibodies and actually have Hashi's and their high FT4 and low TSH have been caused by a Hashi's "hyper swing" and Carbimazole is not appropriate.

So it's important that your "overactive thyroid" is confirmed by TSI/TRAb antibody tests first.

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Treat it as in the endo and gp told me to take the carbimazole, so I did.

okay, I've been taking the carbimazole for two days now, should I stop until I get those tests?

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ed2w

I'm sorry but I can't tell you what to do, that has to be your decision. All my responses have been based on the experiences that members of the forum have shared, those that have been in the same position as you.

It has been explained that you can only have positive confirmation of Graves (overactive thyroid) when TSH/TRAb antibodies have been tested as positive.

Check out this article by The British Thyroid Association,

What are the symptoms of hyperthyroidism? - do they fit?

How is hyperthyroidism diagnosed? - ..... Another blood test to measure the antibody levels (the ‘TSH receptor antibody’) in your blood can establish whether or not it is Graves’ disease...... point this out to your GP, ask if he can confirm whether or not it's been done, if not why not and how can you have a positive diagnosis without this test (this is the TRAb test I've mentioned).

Check out your endocrinologist - you will be able to find his speciality by looking him up on your hospital's website - does it say he is a thyroid specialist or does it mention diabetes - if diabetes (most of them are) then his knowledge of thyroid is likely to be very little and he could be making the same mistake that many other members have been the victim of.

Virtually every member of this forum is here because NHS thyroid care has let them down and they have needed to take control. You need to decide what to do with the information that has been shared with you here.

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Okay thanks I'll look all those things up and rain check. Can I ask one more question, what would be the negative effects of taking carbimazole if it I didn't need it?

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ed2w

I've never taken it so I can't say but Carbimazole reduces the production of thyroid hormone (which obviously you need if you are genuinely overactive). But it's not something that you need if it's a Hashi's hyper swing because it's only temporary and things will go back to normal.

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TSI/TRAb antibody both are negative. t3/t4 still very elevated. TSH at 0 now

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So it's not Graves then.

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with all that information in mind, what is the next course of action (in your opinion)? GP still wants me to take Carbimazole.

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Ask why would you be given a medication for Graves disease when the antibody tests for it are negative.

Ask your GP if s/he would take a medication for something that was tested and turned out to be negative.

Ask for Thyroglobulin (TG) antibodies to be tested. With Hashi's you can have negative TPO antibodies but positive TG ones. So Hashi's hasn't been ruled out.

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Thyroglobulin (TG) antibodies were negative. He said because he needs me to get my thyroid under control because I am so symptomatic and he's worried about the effect it is having on me. Is there an alternative treatment that isn't carbimazole?

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ed2w

Do you have the actual results for all of your antibody tests. Just saying negative doesn't tell us the numbers. If it is negative but close to the top of the range then it's possible that with antibody fluctuation it could be over range when retested.

Always get a print out of your results so you can see exactly what they're talking about, it's the only way to know for certain.

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Okay will ask the doctor for them. I am losing so much weight, I'm getting close to being officially under weight so I am keen to get whatever this is sorted.

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ed2w

If asked why you want them, just say for your own records, no need for further explanation. Print out is best, mistakes can be made when results are given verbally or hand written. Make sure the reference ranges are included. Might be easier to ask at reception desk.

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How much carbimazole has been prescribed ?

Do you know what the range wasfor your FT3 ?

Are you having any symptoms?

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Im having so many symptoms I can't even begin to describe, I've done so many different tests and the only thing they have found outside of normal is my thyroid which is overactive. No range for the T3 annoyingly, though someone mentioned it was high.

40mg daily for two weeks then down to 20mg.

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I was diagnosed with a hyperactive thyroid about fifteen months ago, and had to wait three months for an appointment, during which the only treatment I received was calcium channel blockers, to help deal with my rapid, thumping heart rate. Some others diagnosed at around the same time were given small doses of Carbimazole, which did no more than take the edge off their symptoms. Recently, we’ve seen people being offered higher doses of Carbimazole by their GP under direction from an endocrinologist, and although I agree that it would be good to have TRAb/TSI tested at the outset, I think generally, beginning medication sooner is a positive move . My starting levels of FT4 and FT3 were higher than yours, and I felt so awful when first diagnosed that I would have jumped at the chance of anything that might make me feel better.

For the most part, I would say that the symptoms I had prior to starting Carbimazole were the same as those 4872angie describes as having had while under treatment - in fact, they are pretty much classic symptoms of a hyperactive thyroid. The two exceptions are weight gain and a rash. I did have a rash when I first started on Carbimazole, but it could be controlled with antihistamine. I have put on weight since starting Carbimazole (probably around what I lost), but it isn’t clear whether this is the Carbimazole, the effect of a slower metabolism coupled with a Graves’-sized appetite and reduced activity levels, or something to do with the Graves’ itself.

An untreated hyperactive thyroid can lead to heart problems - many of us are aware that our hearts aren’t behaving properly by the time we see our doctors. There are other potential complications such as thyroid eye disease (Graves’ only), and in the longer term, osteoporosis. There is a condition called ‘thyroid storm’, where an untreated thyroid condition requires hospitalisation.

On the other hand, although it’s not a common side-effect, Carbimazole can cause liver problems, and an even less common condition where the white blood count drops dangerously low, leading to an infection for which the patient needs hospital treatment.

Carbimazole suppresses thyroid hormone production but it can’t deal with stored hormone, so if you start taking the recommended dose today, it could be three to eight weeks before you begin to notice a difference. Your thyroid is clearly overactive to a point where it’s not surprising you are having symptoms, so if any of that is down to continued over-production, the Carbimazole should begin to help.

I think the real problem with people who don’t have Graves’ being prescribed Carbimazole is that if the condition resolves itself quickly and they aren’t being monitored sufficiently, thyroid levels could end up below the range as a result of over-medication. This sometimes happens to people with Graves’ anyway, as it can be difficult to keep the dose adjusted properly. The situation should resolve itself when medication is reduced.

You can ask your GP for antibody tests, but local rules may mean they can only be ordered by the specialist. What I would push for in your situation is repeat FT4/FT3/TSH tests every four weeks, so that if your thyroid levels plummet as a result of over-medication, it’s picked up quickly enough for your dose to be adjusted before it drops below the range.

These links may help:

cks.nice.org.uk/hyperthyroi...

btf-thyroid.org/information...

thyroiduk.org.uk/tuk/about_...

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Ed2w, from my own experience taking carbimazole when it is not Graves (they gave it to me despite having negative antibodies) made me quite poorly. I was hideously tired all the time, could barely function - headaches, brain fog and feeling fluey pretty much all the time. I gained weight rapidly, skin irritations, hot flushes, weak muscles etc. Not nice at all.

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Thanks, god this is all so confusing.

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It’s hideous. None of the ‘professionals’ seem to be able to pin point the real issue and my diagnosis is based on probability rather than test results. As the knowledgeable members on this site have recommended, I have sent for private labs to be done to try and get a better idea of what’s going on. There is so much good info available on this forum and it can be overwhelming to take it all in but I’ve had more success here than in almost a years treatment under the nhs and an endocrinologist

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Sounds about right, if you don't mind me asking what tests did you get done, I've just sent for one on medichecks so we'll see I guess.

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With the endo the only tests he did were TCH and T4. My GP did test for antibodies but it came back negative. I had an external exam of my throat and sent away with carbimazole. It did help my tachycardia though.

The tests I have gone for are with Medicheck and I’ve gone for the thyroid plus vitamins should have results by Friday. I will be amazed if they find me still hyper.

Hope you get some answers soon! x

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