My husband was prescribed Carbimazole 5 weeks ago. Since taking it has been taken a toll on him. Seeing a 58 year old slowly unfolding into an 80 year old.
Can't eat/sleep, permanently cold and wears 4 layers plus heating on and still cold.
GP (not his usual) contacted and said oh it's flu. I went into GP surgery a week later as no improvement and demanded a GP contact him regarding meds. 2 hours later GP phoned and after phone consultation asked to see husband the following week.Reduced Carbimazole to 5mg from 10mg at face to face appointment. Bloods and ECG booked 2 days later. (awaiting results)
Has anyone on Carbimazole has a similar experience?.
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Not yet, still waiting on them. Not sure if you can go any lower than the 5mg which it has been reduced to. He is so close to stopping it himself as he feels so I'll.
It doesn't take 2 weeks to get results printed. Chase them up. Get your husband to call and give them permission to speak with you if he doesn't want to chase them himself.
Until you know what his thyroid bloods are you can't make any progress.
You can cut the 5mg Carbimazole in half - but I'm not sure why he is on this drug and blocking his thyroid hormones -
He's just ' lost ' probably some thyroid hormone production by having ' lost ' half his thyroid - and people then usually if not recovered are prescribed T4 - a thyroid hormone replacement to give them more support - not less = which is what the AT drug does.
It's a very long story. Since partial thyroidectomy 2 years until 3 months ago no follow up or check on thyroid levels have been carried out. I know the pandemic has caused alot of delays.End Nov GP gave the 3months worth of blood results. Examined his neck found a lump had camera and ultrasound done in the 2 week fast track. Shows a mass of nodules on remaining gland hence the carbimazole as blood results showed over activity and worried about a storm.
GP appointment on Friday this week as follow up from November appointment. Hopefully she can explain the results.
He feels that I'll he made the decision today not to take any more carbimazole.
Since the Carbimazole is an Anti Thyroid drug it is blocking your husbands own daily thyroid hormones production from entering the blood stream and when on too much AT drug you will likely feel the disabling symptoms of hypothyroidism - which it sounds like he is :
By reducing the Carbimazole more of his own thyroid hormone production will be released into the blood stream and hopefully some of these symptoms he's suffering will be alleviated.
Without any thyroid function of one's own, after a thyroidectomy for instance, one needs to be prescribed T4 - a thyroid hormone replacement which does the opposite of an AT drug and feeds the body with a daily regular supply of thyroid hormones in order to live.
I'm still confused as to why he was prescribed an AT drug after his partial thyroidectomy
I would also think your husband also needs to have his core strength vitamins and minerals run as if these have nosedived through the ranges because of his inability to eat well his ferritin, folate, B12 and vitamin D may have nosedived through the ranges and these need to be maintained at optimal levels for any thyroid hormone replacement to work well.
I'm sorry you are going through so much yourself as it's very difficult trying to get help and understanding and representing a loved one.
I would guess that as 5mg is viewed as lowest dose doctors have just kept in on it to make sure he doesn’t reach hyper levels. Or the TSH may be remaining low & not responding & rising in response to low levels & his FT4 & FT3 are low, but haven’t been tested or are ignored by doctors because the focus on TSH.
The TSH is unreliable and it’s very important to see what information doctors are basing decisions on and if treatment appropriate.
Your previous post says he had Hemi thyroidectomy, what he hyper at time? Taking carbimazole ? Function may not have been thoroughly checked prior to surgery of the necessity for surgery was compression.
If you’re not making progress getting a full picture using a company supplying private blood test will help you be in a position to advocate with Doctor - might be best option.
Here’s a list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies (Medichecks advanced thyroid) Others a basic function only. (Monitor my health)
You order test online - the kits arrives via post - sample can be taken by finger prick (extra fee for private venous draw). Post back and results available online usually quite quickly.
Thank you for your reply. My husband had the partial thyroidectomy due to a very large goiter which was basically strangling him so had to be done fairly fast. No aftercare until 3 months ago while testing blood.
You need to see results from BEFORE starting Carbimazole and recent test
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
It must be very worrying for you seeing your husband so unwell and symptomatic.
I'm just emphasizing what others have said. You really do need to see your husband's blood test results before he had his hemithyroidectomy. This will help to determine if he's on the right treatment.
I've been reading the forum for the last couple of years and the knowledge and experience of admin and other forum users is very extensive. They will guide you as best they can.
I had a partial thyroidectomy in August 2022 due to a suspicious nodule. I was prescribed Levothyroxine two weeks after my operation as the other half of my thyroid wasn't coping. The support from the forum has been invaluable.
As others have already suggested you need to see your husband's previous blood test results and also get him to have full thyroid testing including antibodies done privately.
It is difficult to advocate for another even if it is for your husband when they don't like to question their GP.
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