Carbimazole side effects?

[4thTimeHyper]

I’ve just relapsed graves after about 15 years in remission. I had covid in January and I suspect it may have been the catalyst.

I never had any issues with carbimazole in the past, but am a bit more nervous now and on the early look out for side effects. Has anyone experienced them?

[pennyannie]

Hello 4thTimeHyper and welcome to the forum :

So, I'm presuming you have a diagnosis of Graves Disease ?

So, this is an auto immune disease, which is for life, and does seem to be stress and anxiety driven for the majority of patients I've come across.

Once triggered and diagnosed, you will be more prone to further " episodes " in times of stress when your immune system response is upset and turns on itself.

Your thyroid is the victim i all this and not the cause :

The cause is your immune system turning on itself and attacking your thyroid :

There is a full list of symptoms of hyper and hypo symptoms on the Thyroid uk website who are the charity who support this forum, some symptoms cross over and so it can get a bit confusing.

There is no reason why you can't be prescribed your preferred Anti Thyroid medication to block your thyroid hormones rising any further.

Wait and play for time until your immune system response to whatever is going on in your life calms down again and life goes back to being on an even keel.

I'm with Graves post RAI in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and just wish I knew back then that i did have options and would have preferred to keep my thyroid and as it is a major gland and integral to one's overall health and body synchronisation.

You might like to dip into the Elaine Moore Graves Disease Foundation website if you don't already know of Elaine.

There are " Graves people " on here who have been on and off the AT medication over various periods in their lives and none the worse for the medication and hopefully others will answer you confirming my thoughts.

[4thTimeHyper in reply to pennyannie]

Thank you for your thoughtful reply Pennyannie.

I will have a look at the resources you recommended.

[pennyannie in reply to 4thTimeHyper]

What were your symptoms at previous times in your life when your immune system went a bit crazy ?

What are your symptoms now ?

[4thTimeHyper in reply to pennyannie]

The first time I was diagnosed was actually about 18 years ago - in my 20s, I just had been to a GP for something else and they noticed a swelling in my neck. I was thin and having trouble sleeping but that’s all I remember at the time. I took carbimazole then slowly reduced it to nothing.

I had a relapse a couple of years later after some stressful experiences when travelling and again was weaned off within a year.

I had one (almost) relapse about 6 years ago which went away on its own (I was strict on my AIP diet - I believe that helped)

This time it was my Fitbit that told me. My resting heart rate started increasing day by day and I felt increasingly jittery and foggy in the head. I’ve had no weight loss or trouble sleeping this time.

The GPs I have been speaking to have been really difficult. They keep trying to give me propranolol which I can’t take as I’m asthmatic. They gave me carbimazole and then refused to give it to me when it ran out and keep trying to fob me off with text messages. I have to manage this myself and chase them constantly. I’ve been referred to an endo but don’t have an appointment to see him until July.

I feel so much better since taking the carbimazole.

I’ve started taking cbd oil which seems to help too.

I’m going to try AIP as that has also helped me in the past too.

I see some other holistic recommendations on the Elaine Moore site - I will definitely look into them.

[pennyannie in reply to 4thTimeHyper]

Good - just another thought - when originally diagnosed were you definitely confirmed with Graves Disease and was there talk of having your thyroid removed or your taking a little tablet referred to as RAI ?

It's just that there are 2 thyroid auto immune diseases both of which initially present with these hyper type symptoms :

Graves, without medication, is considered life threatening as the thyroid hormones T3 and T4 continue to rise and the Carbimazole is used to block the thyroid hormones rising any further. It's a bit like being stuck in " overdrive " :

With Hashimoto's auto immune thyroid disease the hyper phase is transient and your T3 and T4 levels will come down by themselves and no medication is prescribed.

One can experiences several phases through one's life of erratic thyroid production and as your thyroid becomes more disabled from further immune system attacks you will need to be taking thyroid hormone replacement as the glands dies and you start to notice symptoms of hypothyroidism.

Initially, the only way to know whether you have Graves or Hashimoto's is through a blood test analysis for the unique antibodies associated with Graves, namely as a TSI ( worded as a thyroid stimulating ) or a TR ab ( worded as a thyroid receptor blocking ) antibody being positive and over range.

We do see these 2 auto immune disease confused by the medical profession and it would be interesting to know if yours bloods were analysed and Graves antibodies positive and over range, and also your initial T3 and T4 levels at diagnosis.

[4thTimeHyper in reply to pennyannie]

When I was first diagnosed many years ago, I was specifically told I did not have graves. I do now though I think as I have had a private blood test and it shows I have very high anti TPO (range in brackets) and I think that means graves?

AB to thyroglobulin: 36 (<60)

Anti TPO >1300 (<60)

I have been recommended to have RAI several times and have declined.

Did you have RAI for graves? How do you manage it now?

[pennyannie in reply to 4thTimeHyper]

Ok those high and over range antibodies are indicative of Hashimoto's auto immune thyroid disease and NOT Graves :

You do not need RAI or a thyroidectomy :

More likely if you have any T3 and t4 blood test results that you are heading towards hypothyroidism and needing thyroid hormone replacement as your gland is disbled by this disease.

OK whatever else you have on this private blood test report - rather than drip feed the information, please repost everything on the THYROID UK forum where you will be answered more thoroughly about everything you have, haven't got, and everything will become clear and your mind put at rest.

If I look up on the heading on this screen there is a Myhub -Icon - and i think Thyroid uk forum there : I'll see you on the other side.

RAI was the worst decision of my life : I have been more ill since this toxic substance than before, when overactive and on Carbimazole.

I am now at 73 having to self medicate and buy my own medication as the NHS do not routinely prescribe full spectrum thyroid hormone replacement, which, when you haven' t a thyroid is more than likely to be what some people need as they to replace like with like.

[4thTimeHyper in reply to pennyannie]

Thank you so much. I’ll check out the right forum.

I’m sorry for your situation. Thanks for sharing it with me.

[NIKEGIRL]

Hi. Welcome and sorry. I had side effects. Nausea. Headaches that were debilitating and loss of taste. I went to PTU. I yo-yo ed on a d off Carbimazole for 6 months.

[4thTimeHyper in reply to NIKEGIRL]

Thanks for your reply. I will look into PTU. How are you now?

[NIKEGIRL]

Hi. A lot better on the PTU. No physical side effects. I struggle with psychological effects though. Low Mood and suicidal thoughts. It’s very hard. I’ve had very high levels T4 over 100 at its worst range 10-22 and T3 48 at its worst rang 2.0-6.0. Coming down off those numbers has been hard psychologically. Considering this is your 4th time you know the symptoms. I’m not quite in range yet but nearly there

[4thTimeHyper in reply to NIKEGIRL]

I’m glad you’re feeling better on PTU but sorry to hear about your low mood. I have felt that so much more this time too

[NIKEGIRL in reply to 4thTimeHyper]

Yeah it’s par for the course. Purple Nails has given u f see one great advice

[PurpleNails]

Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb) are associated with Graves. Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) which are highest in autoimmune thyroiditis/Hashimotos this ultimately causes hypothyroidism. There can by an overlap with antibodies and you can also have both conditions.

Recommend if you don’t already, you start to keep a diary of your symptoms and note any new or changing symptoms. Record when you start taking medications or supplements. Make sure you get into the habit of obtaining test results to keeping track of your levels. Once you understand the results and how medication is affecting you will help be your own advocate.

Might be good of you can obtain historical copies of your results never trust being advised “good or in range” doctors often say this about anything which isn’t concerningly out of range. The also don’t always conduct the right tests, or an incomplete set of test for thyroid testing, (especially with regard to antibodies).

For full thyroid function you need:

TSH

FT4

FT3

TPO

TGab

TSI or TRab if Graves suspected

B12

FERRITIN

FOLATE

VITAMIN D

Obtain any recent results printout via reception (don’t ask doctor) or arrange online access for GP records.

Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to be obstructive just say they are for your records.

[4thTimeHyper in reply to PurpleNails]

THANK YOU! I’ve been asking my GP for my results but not yet got them, though I know the tests will not have everything so I’ve had private tests. I absolutely believe in what you are saying. I have to manage this myself.

Can I ask one question: why is folate relevant? I noticed this was high out of range on my private test results

I’ll post my full bloods on the thyroid group once I get my latest results.

[PurpleNails in reply to 4thTimeHyper]

Good question. Usually these 4 main nutrients are listed as they are essential for good conversion of FT4 to FT3. So generally more relevant if hypo when uptake and conversion of synthetic hormone is vital.

Being hyper can also metabolise nutrients faster. These nutrients can be affected by thyroid whether high or low. They can also create symptoms very commonly associated with thyroid symptoms so it’s important they are excluded as a contributory factor. An abnormal result in one of these will point to what else might need testing. High folate may affect B12. Do you take any supplements eg B complex or multi is containing folate, or folic acid (less absorbable) but if taking several types can add up?

[4thTimeHyper in reply to PurpleNails]

Very helpful and educational for me - thank you so much. I do take a B complex, maybe I’ve been taking too much. I’ll do a check. I really appreciate your advice.

[eagle098 in reply to PurpleNails]

Once we have these results what do we do with them, you have a lot of knowledge I am grateful.

[PurpleNails in reply to eagle098]

Once you have the results many post on here for advice, then as a group others can offer their opinion and to confirm what the results mean and how best to proceed.

It is not wise to assume practice staff will always correctly check the results & follow up every-time. There is always a possibly that at some stage something is missed. It’s quite common for staff to overlook anything that’s not red flagged out of range and leave a patient on the wrong medication levels, or no results are processed at all.

I think getting an understanding of own results is the best way to grasp & guide your treatment and help your own health quicker.