I am 48 and was diagnosed with an overactive thyroid on Tuesday. 10 mg of carbimazole was prescribed along with 40 mg propranolol. I’m also menopausal and feeling pretty unwell. I’ve started HRT but unsure which symptoms are menopause and which are thyroid. I’ve got an appointment in December to discuss the menopause symptoms further.
Main symptoms are a continuously racing heart, feeling hot and anxiety ( particularly when driving) and feeling off balance when driving. I’m getting worried there’s something seriously wrong with me! Any advice would be much appreciated.
Thanks.
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Blitzen50
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All you describe are symptoms that are usual for hyperthyroidism. It is an awful thing to have. 10mcg of carbimazole is not a big dose. I was on 40mcg when I started out. It could be that your dose will increase. It does take time to work though so it is early days yet for you.
It is an awful condition and I’m sick of it. I think it may have been around for longer than I thought. It seems most people are on higher doses than me.
Who diagnosed your overactive thyroid - GP or Endo?
What were your test results, can you post them with their reference ranges - if a GP test and you have online access to your results you will find them there, if an endo maybe they will be in a letter to you/your GP.
Did you have thyroid antibodies tested - TSI (Thyroid Stimulating Immunoglobulin) and/or TRAb (TSH Receptor antibodies) which are the antibodies which confirm overactive thyroid (Graves disease) or even TPO (Thyroid Peroxidase) and/or Tg (Thyroglobulin) antibodies which are the antibodies which confirm Hashimoto's (underactive which often starts with an "overactive" period).
Many members have been diagnosed with overactive and started on Carbimazole/Propranolol and in fact they don't have overactive thyroid at all, they've had a typical "hyper" period of Hashi's, so they have been given the wrong diagnosis and medication.
Did you start the thyroid meds and the HRT at the same time or did you stagger them?
Seaside, my GP first picked it up when I was at the surgery for something else. She referred me to Endo, whom I saw on Tuesday. I will try to get my test results this week and post them here. Endo said he didn’t think it was Graves or auto immune related ? He felt a goitre and enlarged glands.
I started the HRT in August this year. Only been on carbimazole for a month ( 5mg) upped to 10 mg this week.
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
Important to know exactly what has been tested and equally important what hasn't been tested yet
UK GP practices are supposed to offer 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.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
If Graves' disease is suspected (hyperthyroid) then testing TSI or TRab antibodies
If Hashimoto's is suspected (can initially present as hyperthyroid before going hypothyroid ) then TPO and TG thyroid antibodies should be tested. Graves can also have slightly high TPO or TG antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I’ve made a note of what to ask for and will get the ball rolling this week. The bloods were taken at the hospital and phlebotomist said the GP would have to request them? So I may ring the consultants secretary to find out how to obtain the latest results and check exactly what has been tested.
Carbimazole is generally prescribed for people who have been diagnosed with Graves Disease, is this the case, please ensure that you have tested positive for the Graves TSI and or TRab. antibody blood test.
If you do have Graves Disease apart from this this excellent website, you might like to start reading up on the Elaine Moore Graves Disease Foundation website. It is Stateside so there is some medical terminology slightly different to here in the UK but the content covers all aspects of this auto immune disease that just happens to attack the thyroid.
Carbimazole is meant to stop the overproduction of your thyroid hormones and hopefully this level of medication will work for you, otherwise if you find no relief of symptoms, you could ask for a dose increase of this anti thyroid medication.
Your body clock is running very fast, and your metabolism has increased to uncomfortable levels. This disease thrives on stress and anxiety, please take time to allow the medication to work, and give yourself time to try and relax and stay still and calm.
I understand that it's a difficult time, please get singed off from work, and once on the right level of AT medication things will fall into place, and you'll feel better able and back in control.
It does feel as though my body is on auto pilot. I’ve only been in my job three months and hadn’t reckoned on this happening. I’ve 4 weeks until the end of term ( I work in school for children with complex learning needs) and then I will review things over Christmas. If I can’t carry on until then, I will have to get signed off I guess.
I had graves diagnosed in 2014. I felt awful and can relate to all that you have written. I felt like this for a couple of months before I went to the doctors (I thought I had anxiety and it would pass eventually). With hindsight, I should have taken time off work until I felt better. I would not hesitate to do this now, if I ever relapse. You will feel better in time (in my case, very quickly once treatment was started) but until you do, please allow yourself to consider taking time off work.
It will take a while for your carb to kick in.funnily enough it was after an incident in my car that I went to see my GP and after blood tests etc was diagnosed with Graves‘ disease which is an autoimmune condition - hyperactive thyroid with antibodies.
I started on 20mcg carbimazole- no propranolol because I’m asthmatic. Had a blood test after four weeks and got a letter from my as yet unseen endo telling me to increase my carb to 40mcg a day which I did.
I saw the endo after three months and was hypo. My hospital treats by block and replace - stuck with the same amount of carb and levothyroxine was steadily increased and the treatment took exactly a year - exactly what I was told at my first endo visit.
Always get a copy of of all of your blood tests along with their lab ranges. Try to get vitaminD and B12, ferritin and folates checked too although you may have to pay for those yourself as a lot of doctors don’t want to do that. You want all four of them to be well up in their ranges to help your thyroid.
If you smoke then stop. I always took high strength slow release vitaminC and zinc while I was taking carbimazole - pharmacist’s advice as soon as I started carbimazole.
I also kept a daily diary of how I was feeling - very useful for when I went for my hospital appointments otherwise I would just have said ‘fine’ when askedhow I was even if I wasn’t ‘fine’. It was also useful to see that even if I felt I wasn’t making progress, reading back showed I actually was.
I also related it to the treatment I was having and could see how I was feeling on the various levels of medication I was taking.
Read as much as you can about Graves, don’t be pushed into any treatment you aren’t sure about, relax and rest as much as you can. Take an active part in your treatment, read, ask questions and don’t just go along and ‘have it done to you’. Good luck.
Fruit what was the incident in your car ( if you don’t mind me asking?) I only ask as driving is proving problematic at the moment and I don’t understand what’s happening? It seems my balance is all out and it feels a bit like I’m being pushed to the side of the car? I put it down to low oestrogen ( menopause) but I think it’s gettimg worse. I can only drive very short distances on straight roads.
I will look at getting my vitamin levels tested also. Endo hasn’t mentioned Graves though. A scan is on the horizon he said.
It was dark and I was crossing at a gap in a central reservation on a dual carriageway . I had waited for ages and there seemed to be nothing coming and all of a sudden after I had moved out a car came tramping along out of nowhere it seemed. I put my foot down hard and felt as if the car stuttered. I got such a shock.
Suppose it was an adrenaline rush. I hadn’t been feeling well for a long time - was told by a totally uninterested GP three months earlier that I was ‘needing my holiday’. Drive all the way to the south of France jumping out of my skin every time a car came near or we got near a car - I ate Dr Bach’s Rescue Remedy gums all the way there - not sure they worked.
So after the near miss I went to the doctor and said I felt so ill I couldn’t go on.
It's seems a common thread and have read that Graves can be triggered by a sudden shock to the system, like a car accident or an unexpected sudden death.
I too had been unwell for several years, culminating in a work employee being physically threatening and verbally abusive to me, there were no witnesses, as he actually had planned this that way.
I went through the grievance procedure as one does but to no resolution.
About five months after this unprovoked assault I was diagnosed with Graves Disease. I was given no explanation as to why this disease had reared it's ugly head and I continued to work as the manager of the unit, believing I was " bigger " than this and could ride things out until the unit ceased trading at the year end.
I just wish I knew then, what I now know thanks to this amazing site and the Elaine Moore Graves Disease Foundation website in the States.
Strange you should say that because I believe mine could have been triggered by the death of my best friend. She died of a brain tumour in 2007 and we had been friends for over 30 years since were both in our late teens. Our children were of similar age and we were like sisters so I took it badly. I had helped to nurse her because she had been wheelchair bound and was suffering from liver failure because of the chemo which had attacked her liver. She was only 46 and left two children aged 20 and 18. I was beyond devastated as I had lost my Mum to cancer 20 years before I felt like anyone I loved was taken from me. I then started to get symptoms of Graves' disease which my Doctor thought was the menopause and gave me hormone patches which I did not use because my mum died of breast cancer.
Luckily I am now in remission again and feel ok at the moment.
I dont want to add to your worries, but Im gonna say this, in case it helps you decide that you do indeed need to be signed off.
If you have an accident, you wont be insured, and if anyone is injured, the law considers you in a similar way to a drunk driver. (and the police confiscate your phone and can presumably read things like your entries on here) .Especially as you re aware that you're affected, i would urge you to stop driving.
That's just reminded me - when first diagnosed with Graves Disease somebody I worked with said I wouldn't be able to drive, but since I wasn't driving at that time in my life, simply " filed it away somewhere " and you've just prompted that statement back into my thoughts.
Whether it be true or not, I do not know.
I am now post RAI and considered " treated and hypothyroid " - I do now have to drive as I live in a rural area and am self medicating as unable to access full thyroid hormones replacement on the NHS.
P.S. I would prefer not to be driving but currently I don't have that option.
I hardly drive, only when I have to. I live semi rural and driving is a necessity. I do not know what I am going to do as I feel my life has been taken with menopause and now this. A whole year I’ve felt ill, riddled with anxiety and other symptoms. What is the point in living?
That’s good that you can drive. Something is affecting my driving . Either hormonal or something else. I’m going to ask to get my ears tested, then a brain scan. I would love to ge able to drive normally again
i gonna come over as the bad guy here. and dont want to be cos i also rely on my car more and more, the sicker i get, so i do understand.
But if you think about it, we wouldnt dream of saying excusing, say an alcoholic for saying 'i have to drink and drive, cos i live in a rural area' .
it s not a very elegant analogy, but what I mean is, if ANY of us are not well enough to drive, we shouldn't be.
Sorry @mikey3, i didnt want you to feel picked on, but as we re all looking after each other, sometimes, we need things pointing out to us (especially as we might have brain fog).
Were these your results before you were started on carbimazole?
Do you know the ranges, as they differ between labs? It will enable others to interpret them clearly.
It appears your doctor is focusing on the TSH. If you have in a range (euthyroid) FT4 and FT3, taking carbimazole, (being an anti thyroid) will lower those levels. I believe your doctor may be trying to see if this will raise your TSH but your thyroid levels may go very low or even below in range before the TSH responds.
I had diagnosis of toxic nodule last year, causing hyperthyroid. My FT3 was slightly over range and FT4 was borderline. Since then I’ve had blood test every 6 weeks and carbimazole adjusted if levels low or high. Do you have repeat blood test scheduled?
My specialist said my TSH will likely remain suppressed and it has not moved from 0.01 the entire time.
I was taking 5mg of carbimazole for 30 days when these bloods were taken. I don’t know anything more. I have a scan on January 3rd. So my TSH is suppressed but the others are in range? I could go hypothyroid then? I haven’t got further blood test booked. If the carbimazole requires adjusting, I’m hoping the Consultant will contact the GP?
I was worried this was your results at diagnosis, but now it makes sense. It’s good your FT3 and FT4 are now within range. It’s the aim of the medication. Can you obtain your results from time of diagnosis (and the ranges) so you can compare.
The ideal is your level will remain stable on the medication you are currently on but it possible the level will fluctuate either way, which is why your levels will still need regular monitoring. For example I thought I had found my correct dose when I was stable for nearly 3 months, but my FT3 gradually trended upwards so now I take an extra 10mg more at weekends.
I also take propranolol and noted this has an impact too. When I stopped taking it my levels rose quite dramatically. (Do not abruptly cease this medication. It must be weaned down very slowly) I was not advised this and suffered with migraines and had to be put back on them.
Propranolol has a Anti thyroid element to it - reprioritising the conversion of T4 to RT3 over T3, so good for hyperthyroid but not recommended f͏o͏r anyone with hypothyroidism.
Thanks for that piece of information. I have just found the results prior to these. Again FT3 and FT4 were both in euthyroid range, TSH was low. Serum free T4 level 13.5, Serum TSH level 0.01 and Serum TSH level 5.9.
I do take propranolol 40 mg twice a day. I find it does help with the racing heart I am experiencing. My problem is , that i am unsure which symptoms are menopause related and which are thyroid. I would say my main symptom at the moment occurs when driving my car. A sense of lack of balance. I cannot work it out at all. Consequenly, I have pretty much packed in driving for now. I think it is anxiety of some kind. Can you relate to that at all?
“FT3 and FT4 were both in euthyroid range, TSH was low. Serum free T4 level 13.5, Serum TSH level 0.01 and Serum TSH level 5.9”
Do you mean FT3 5.9? Without range there is no way to be accurate. Looks high, you do not have a repeat FT3.
Also have your vision tested, if you haven’t recently. There are some eye conditions which cause anxiety and dizziness while driving (especially in reduced light).
If you have a combination of things going on, one symptom could be magnified by another.
In answer to your other questions:
“So my TSH is suppressed but the others are in range?”
Yes 0.01 is suppressed, euthyroid means it in range. You haven’t supplied ranges so it not possible to say where in range you fall. But IF the range was for example (8 - 21) your result of 13.3 would be 40.77% through range. If you were 13.5 thirty days before the difference of 0.2 is very small.
“I could go hypothyroid then?”
Someone taking too high a dose of anti thyroid medication would have hypothyroid symptoms. They would need a dose adjustment.
“I haven’t got further blood test booked.”
Agree on a schedule with you doctor and follow up yourself. Do not leave it longer than every 8 weeks. 4 weeks might be too short a time to judge the full effect of a dose.
“If the carbimazole requires adjusting, I’m hoping the Consultant will contact the GP?”
Don’t just trust it will be done. Always follow up yourself and check results. Information can go astray at any stage on way to lab, consultant, sectratary, gp before it actually reaches patient.
I was diagnosed in dec I'm the exact same as you my bowel movements are lose really bad mood swings so I wouldn't worry it's all to do with your thyroid
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