I have noticed the last couple of weeks that my scalp is itching and stinging, mainly at night. My hair parting is slightly pink looking in places (I have some thinning of my hair also). I have been taking Carbizamole since August 2021, currently 10mg a day and wonder if this is connected, have I developed an allergic reaction? I can't find itching/stinging scalp as a side effect anywhere. My last blood tests were in November 2021, TSH 4.05, T4 9.3 and I am due for more at the end of this month. Have made an appointment for 10 days time and am planning to visit my local pharmacist today for advice as seems quicker than waiting to see my GP.
Anyone else had this or similar? Any advice?
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BeeOrchids
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Try a antihistamine, it does sound like a reaction. Either caused by carbimazole or your scalp is become more sensitive because your levels are not right.
You haven’t add ranges but by most we see that FT4 is very low & TSH isn’t reliable after hyper phase, & it’s likely too high, most have around 1.
Hi, thank you so much for replying so quickly. Yes antihistamine, realised after posting that would be the best starting point. Have an almost untouched box so will give those a go for a few days and see what happens.
The results posted are all I was sent. They only arrived 10 days ago despite me requesting them from the hospital in mid December. The letter I received from the endo was extremely brief, gave the results, said was reducing the Carbizamole to 10mg from 20mg a day and would see me again in May. Before seeing him I had only just got a repeat prescription of the higher dose and it was only me looking on my Patient Access account that let me know. I didn't want to waste NHS resources so have bought a pill cutter and have split the pills I already had rather than order more. The form I have for the next blood test has got FT3 to be tested and am sure it was on the previous one too.
Sorry, feeling rather disillusioned this morning after another bad night's sleep fretting about thing thyroid generally.
Speak to your pharmacist as well as starting antihistamine. They can confirm your in the right track & may have a additional suggested eg soothing lotion that could help too. ?maybe.
For some reason hospitals & GP practices can hold on to result & then don’t give out all the information even when asked. It’s almost as if they don’t want you to know. But you are legally entitled to the full results. You may have to bit more persistent and politely repeat you require results and ranges. You are legally entitled to them.
If online access not working ask receptionist & agree a time to collect printed result, they may say they have to get permission & they do have to check the results are checked off by doctor & sometimes the need to find time to print.
If it’s the hospital arranged test the GP may not have access but admin staff can do same or most hospital have a a website with a link to records department.
What was your TRab / TSI level?
When you collect you next prescription they do produce a 10mg carbimazole. I would have done the same with pill cutter.
Id come back to suggest about products with oats in & see you been recommended Aveeno - You can also use the raw product.
Oat baths are excellent to sooth any skin irritation. You can buy very fine ground oats commercial prepared to add to bath or what I do for my daughter who has eczema is put a handful of raw oats in a tightly knotted pair of tights and run under warm water. Turns the water milky and there’s no reason you can’t wash your hair in it.
Only down side is tub needs a more thorough clean afterwards, but it’s worth it as done wonders for my daughter skin. It was a remedy I discovered for soothing chicken pox itching but helped her skin so much carried on doing it.
Oat rinses for hair are a beaty remedy. Cold oat water rinse might be a easier option. Just make sure it’s raw oats & not one with added sugar and flavourings.
I had a rash on my legs when I first started taking carbimazole, so they thought it might have been an allergy, but it was sorted by OTC antihistamine, and by the time I stopped taking them (end of the hay fever season), the rash had vanished and never returned.
I was also generally more itchy while hyper, even before carbimazole had been prescribed. OTC antihistamine might work (ask your pharmacist) but it might be one of the side-effects of being hyper and not an allergy.
The thing is, in your case, even though you haven’t given your ranges (did they not test FT3?). you don’t appear to be hyper at the moment. That TSH is quite high for someone on carbimazole, was your dose 10mg/day at the time of the last test, or did they reduce it to 10mg on the basis of your November results ?
Do you know what was causing you to be hyper? If you’ve been told it's Graves’, did you have a positive antibody test, specifically TSI or TRAb?
Hi, thanks so much for replying to me. Yes I have Graves as well. Diagnosed in August 2021 and prescribed Carbizamole 20mg twice a day then. That was dropped to 20mg once a day when I saw the endo in October then 10mg a day following the blood tests at the end of November 21. I feel as PurpleNails has suggested upthread that my levels are not right. I have been feeling not well the last couple of weeks and have noticed I am becoming breathless again and have a slight tremor, both of which I had much worse last summer.
I am so green to all this. Is it considered acceptable to contact the endo between appointments to say I'm not feeling too good or should I be going to my GP?
If you’re not feeling well, you could certainly contact your endo (or their secretary) and ask if it’s possible to have your test brought forward. Even if they can’t bring your appointment forward, they may suggest an earlier test and could adjust the level of carbimazole based on the new test. As you’re seeing a specialist, your GP won’t really be involved in your thyroid treatment (and may not be able to order FT4 and FT3 tests if TSH is within the normal range) so there are no protocol concerns here.
If anything, your last TSH results suggest your thyroid levels might have been a bit low, or were headed in that direction, hence the reduction in carbimazole. Antithyroid treatment means that you will probably be on carbimazole for 12-18 months, they will tweak the dose in that time but are unlikely to stop it altogether from 10mg/day even if your thyroid levels are a bit below the reference range . Unfortunately, with Graves’, the thyroid doesn’t behave in a nice, predictable way, so it’s difficult to get the dose right. The aim with Graves’ antithyroid treatment is to get your thyroid levels back within the reference range and keep them there, and quite often the endo will want there to be some headroom between where trends say your thyroid levels are likely to be, and the top of the range. The interval between tests after a change in medication is rarely less than 6 weeks (perhaps 4 weeks early on) as the body needs time to adapt to the change. Your interval has been a bit longer than this, so it’s quite reasonable to contact your endo if you feel your symptoms are changing.
Patients with active Graves’ normally have TSH, FT3 and FT4 tested, as FT3 may remain high/start heading for the top of the range while FT4 is relatively ok. With TSH at 4, it’s unlikely your FT3 was over the range when you were last tested, but it’s always possible your Graves’ has relapsed since then, and that 10mg/day of carbimazole wasn’t enough to control it at this point. Symptoms of being hyper/hypo overlap to some extent, but with practice you will probably develop a feel for which way your thyroid levels are heading. If you have a heart rate monitor, eg on a fitness watch, this can also give you a clue -if resting heart rate is consistently high, your thyroid levels may also be high. Don’t get over-anxious about this and start walking around constantly looking at your watch - anxiety is a symptom of being hyper and worrying about being anxious will just make you feel worse !
You didn’t mention whether your Graves’ had been confirmed by an antibody test…if you don’t know, something to ask your endo at your next appointment.
PS Being well enough to use a pill cutter on those tiny tablets is a good sign…when my symptoms were at their worst, my tremors were so bad I struggled to open the bottle!
Hi, yes the Graves was confirmed about a week after the hyper diagnosis. My GP was very good when I went to her feeling ill. She booked me in for a full set of blood tests within days at the surgery which included for Graves. That is the only full set that has been done and when I had my appointment with the endo he hadn't received the results. I handed over my printout being helpful and never got it back. I've booked myself for the first appointment I can get for more blood tests, a week Monday. I will send an email to the endo department at the hospital and say I am not feeling too well at the moment. Have taken an antihistamine tablet this morning so hoping that will improve things scalpwise.
I don't think my heart rate is over fast. Certainly not the racing of last summer. I do the 1 and 1000 count we were taught at school when taking my pulse and it seems around that. Bit of a luddite so don't have a FitBit or anything. Only got a smart phone late last year!
There is an alternative to Carbimazole - Propylthiouracil - PTU for short :
This is a known side effect of Carbimazole which generally happens within weeks of taking the AT drug and it should be mentioned on the Patient Information Leaflet in the box.
How are your eyes ?
Whatever lotions, potions and drops you maybe using , prescribe or OTC please ensure they are all preservative free :
You might like to look at the Thyroid Eye Disease Charitable Trust - tedct.org.uk :
They can signpost you to a specialist unit near you and understand there can be an endo on site, who helps and advises on treatment options.
I would talk through your current symptoms with your doctor and s/he will likely be able to make contact with the endo same day, and take advice accordingly.
We do need to know which Graves antibodies TSI or TRab were tested and positive :
Your levels now look much too low going by just the TSH and T4 detailed above and a further full blood test to include the T3 actioned.
Hi, thank you for replying and nice to hear from you again. My eyes seem alright. I thought they were a bit gritty last year when I first messaged on here but that seems to have sorted itself out. I am very aware of TED and check for any change in the appearance of my eyes often.
I have changed hair shampoo the last week or so. My hair is extremely fine so I am going down the route of baby shampoo as that is mild and suitable for sensitive scalps so seems a good one to try. It occurs to me writing this that I was sent a sample of a face serum recently I have been using for about two weeks. I will stop that and throw the remainder away.
Following are the results of the three sets of blood tests I have had with the dates of the tests.
Thank you, ok I'll use the same ranges as presume the same labs were used for all the blood analysis.
So, at diagnosis your TSH was 0,01 and in November 4.05 in a range of 0.35-5.00 :
Your T3 was 46.10 and in October your T3 was 2.90 in a range of 2.40-6.00 :
Your T4 was 53.30 and in November your T4 was at 9.30 in a range of 9.00-22.00 :
Was your Carbimazole reduced on the back of these results ?
The Carbimazole blocks your own thyroid hormone production :
If you follow through these results you will see that now your T3 ( though not checked ) is likely under the range as is your T4 and you must be feeling very unwell :
The TSH has risen above the range in response to the very low T3 and T4 :
You need a blood test for TSH, T3 and T4 like a month ago :
Some endo suggest adding back in to the prescription some T4 medication so your levels do not drop too far, as currently you appear hypothyroid and the symptoms are equally disabling.
Please ask that your ferritin, folate, B12 and vitamin D are run as these need to be kept at optimal levels to help support your core strength strong nd solid during this first phase of the disease.
You can go back into that post by pressing the edit button and just tap in the ranges - if you have them - and then just press edit response when finished :
I have not taken that medication, but I have had a generally sore scalp at the top of my head, and also eczema at the base of my neck. Yes, taking an antihistamine, especially before bed so I wasn't scratching overnight, really helped. Also, I found that Aveeno shampoo and conditioner really helped. I'd feel improvement after the first wash, and usually after the third wash, it was completely alleviated. It has colloidal oatmeal in it. When I would want to use products to style my hair after washing, I would use some type of therapeutic oil on the sore itchy places to coat it before I styled. Hope this helps! Best wishes!
Hi, thank you that is most helpful. I will get some Aveeno shampoo and conditioner. I usually let my hair 'air' dry without any other products and am hoping now the weather seems to be warming up that I can shed the woolly hats and let my head get some air on it. I think the latter may help a lot.
So sorry to hear that you're struggling I completely empathise - when I still had a thyroid, the itching I had on carbimazole was completely insane; my scalp, legs and chest would become so unbearably itchy that my chest in particular was sometimes painful to touch afterward (I also had a rash all over my chest from the carbimazole that only vanished after TT). The itching on my scalp also kept me up at night sometimes, and I would dread going home from school on the tube because I knew I couldn't scratch my head or legs the way I desperately wanted to without drawing unwanted attention.
Hi, thank you for replying to me. Yes the itching has been getting me down, I've been close to tears a couple of times. I wondered if I had an infestation of nits at first. Spent several minutes hanging my head off the bed and doing selfies of the top and back then studying the result which shows no sign of them. I've discovered Boots have Aveeno shampoo and conditioner (suggested by MtnClimber) half price at the moment so will go out and get some tomorrow. I'm trying not to wash my hair too often and aggravate matters. I don't seem to have a rash elsewhere so far but have hideous ankles with purple scaly blotches on them, the endo seemed unconcerned when I showed them to him. It's good knowing that others have had similar problems as it reduces the worry I find.
Hopefully the shampoo and conditioner is helpful! It is quite scary at first, isn't it...towards the end of my hyperthyroidism journey I would cry out of frustration at the itching a lot - I noticed it seemed to be a lot worse at night for some reason. I hope your endo isn't too dismissive in general, if he is, please don't forget you canask to be referred to someone else. I wish that had crossed my mind when I was still in your position.
He, the endo, seemed alright when I saw him last year. He was approachable and seemed sympathetic as well. I found it very difficult understanding what he was saying to me with masks being worn. I was pleased to actually get a referral to him fairly quickly as having a proper appointment rather than online is much better. He said he will see me in person again in May which isn't too far away. I've got blood tests booked for 10 days time and will email his department and say that I've not been feeling well the last few weeks. See if I can get him to phone me for a chat about things.
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I completely empathise - when I still had a thyroid, the itching I had on carbimazole was completely insane; my scalp, legs and chest would become so unbearably itchy that my chest in particular was sometimes painful to touch afterward (I also had a rash all over my chest from the carbimazole that only vanished after TT). The itching on my scalp also kept me up at night sometimes, and I would dread going home from school on the tube because I knew I couldn't scratch my head or legs the way I desperately wanted to without drawing unwanted attention. 
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