Hi there
I’m new to this so no great knowledge yet. I’ve been taking carbimazole for 4 days so far and in 9 days am due to fly to Dubrovnik for 6 nts. I feel ok - little bit trembly at times snd increased heart rate but steady.
Should I feel confident to go?
Would really appreciate your advice. Thank you in advance!
Welcome to forum.
Do you have access to blood test records? Recommend you start checking your test results and learning to understand how best to monitor and track you results in future. Share on here, with ranges and we can explain exactly what they mean.
I initially read you were away for 6 months and was going to ask what plans you had to monitor your levels, but I think 6 nights break might do some good especially if you can relax. If you are likely to start doing strenuous exercise then it might not be a good idea.
Are you aware of rare serious signs to look for when on carbimazole . The patient information leaflet will list them. & have you checked if this affects insurance?
How much carbimazole have you been started on? Single dose, split dose & how much. Has GP arranged a referral. This might take months so you’ll need to ensure levels are rechecked in about 6 weeks. To see what affect starting medication has had. Doses are usually adjusted at this point.
Do you have a fit bit or way to track heart rate. This can be a good way to see of levels are improving.
Once you are home you’ll need to ensure the cause of your hyper is determined. Usually thyroid antibody testing is done.
Low nutrients are common with hyperthyroidism, see if doctors have tested or will test folate, ferritin, B12 and Vitamin D. There are private companies if GP won’t test everything.
Have a great trip.
Thank you so much - that is really helpful and reassuring. Yes I’ve had a referral to endocrinologist but warned of a wait. Blood test booked for 3 weeks time. I have a fit bit and will relax.
Doc went through risks and I feel they’ve looked after me well. Insurance through Cedar Tree also very good.
I haven’t any print outs of my blood test - I will ask for them next time.
So glad I joined this forum - thank you.
Should I avoid any foods or alcohol??
Ask if your practice is set up to allow online access (England mandated to supply) other areas vary. Otherwise print out is best option. Ask via reception (some doctors don’t like it) they shouldn’t question why, but if they did, just say they are “for your records”. You are legally entitled to them.
Usual foods & diet should be fine, & there’s no food types you need to avoid. The only reports I ever heard of is holiday makers eating excessive seafood /or dyes from seaweed & then feeling more symptoms (it’s possibly the iodine) which used to be used in treatment of hyper. Iodine doesn’t need to be avoided but excess shouldn’t be taken.
At at later stage you might want to investigate gluten/celiac which is common issue with thyroid autoimmune. That needs to be tested while on a gluten diet. Then once tested trialing gluten free might be an option. Gluten intolerance doesn’t have a test.
Moderate drinking fine. Be extra careful as when thyroid levels change you may find your tolerance reduces. I went off alcoholic completely when I began carbimazole. I was also given propranolol for palpitations.
Do you smoke? If you do it’s especially important to stop as can worsen aspects & complications of the condition if you do turn out to have autoimmune condition.
I know it can be annoying to hear. I’ve never smoked nor have autoimmune hyper but the doctor gave me a long no smoking lecture during my last telephone consult.
Thanks again. Appreciate it. Don’t smoke so that’s ok. Have a good weekend!
Sorry I didn’t answer your question - I’m on 20mg once a day. Heart rate 85resting and shoots up if I go up the stairs etc. Went for a steady walk and HR felt higher for a few hours afterwards. How soon do you think the tablets will lower my HR? Thank you so much for your help.
Once your levels are in range the fast heart rate will settle. Usually a few weeks after as it takes time to recover & adjust.
Carbimazole works by stopping new hormone. There’s no method to remove the excess the surplus has to be used up by the body, most say the worst symptoms are much improved in 4-6 weeks and depending on how well levels are monitored appropriately and remain stable you may expect to feel much better in 6 - 8 weeks.
It totally safe to take as 1 daily dose & many do just that, but you can also consider splitting dose and taking 10mg 12 hourly.
Carbimazole works quickly, within hours. So splitting dose means better control and less of a time frame to allow hormones to begin producing between doses.
Many doctors don’t really account for this as they look as the dose strengths which are produced by manufacturers and go by that.
I was started on 20mg, it’s a moderate starting dose. Often 40mg is given and if levels are exceedingly high up to 60mg is given.
After 2 months I was bottom of range and my dose was halved. I flip flopped between 10 & 15 for over a year. What I needed was a slightly higher dose 2-3 days a week. It was me that suggested the alternating dose. I prefer to take the same daily dose so started splitting the pills to take 12.5 per day.
Then I lost a fair amount of weight. (I had gained weight when hyper not lost it). I also felt well enough to exercise more & once I upped my activity levels I seemed to need a lower dose still and currently on 10 / 5 alternating days.
Thank you. I’m missing exercise so look forward to feeling well enough to get back to it. Thank you again - I’m gaining knowledge and reassurance with your advice. Much appreciated.
I requested my first blood test result and here it is. I had another test this morning so should have those in next 2 days.If you can explain it to me I’d be very grateful thanks
TSH Thyroid stimulating hormone, is a pituitary hormone which signals the thyroid to produce hormone. It’s sensed you have high levels and reduced < means test limit it’s undetectable.
The TSH It is a useful diagnostic measurement but if can stay low for longer than expected especially, after being hyper. Further tests must monitor thyroid levels. FT4 & FT3.
The two unbound usuable thyroid measurements are FT4 (the free thyroxine) & FT3 (the free triiodothyronine).
These are very high with FT4 being nearly 3 times the normal level & FT3 over 5x the levels. These highs levels are not unusual for Graves.
The carbimazole will lower levels gradually once your subsequent test results are back you would expect to see your FT4 & FT3 to be lower. Your TSH will likely take longer.
Thank you that’s very kind to reply to me. If this blood test shows lower results would you think I’d be ok to travel? Feel a bit trembly in the mornings and today heart rate seems a bit higher as I’ve been out for the test and quick trip round Sainsbury’s!
Lower levels means the carbimazole is working as expected & I would be happy to travel.
If the levels are similar or higher then you’ll likely need a higher dose and until levels were showing signs of getting under control yet I would stay home.
What does your GP advise?
Thanks. I will speak to a GP fir the results in next 2 days but last week said probably ok but let’s get another test to make sure. I felt much better yesterday but can feel my heart beat more today.
GP likely wants to ensure you are on right track.
Odds are your levels have started to come down. Your symptoms will ease in the coming weeks but as levels will remain high for a while longer & will fluctuate you will still have symptoms & it might alter daily, having good days & worse days, this is normal.
Sometimes propranolol is given temporary to relieve the worse symptoms such as palpitations. It helps with symptoms not the underlying cause. Was this considered? Must be reduced slowly before stopping & Not suitable for asthmatics.
I have remained on low dose of propranolol dose as migraines worsened when stopped and now prescribed as migraine prevention.
I would delay starting a second medication until home again.
Hopefully GP ordered some extra tests such as nutrients and full blood count, Possibly antibodies, or they may leave that to the specialist. If just TSH is tested which sometimes GPs request it won’t be enough information. Once you can see your FT4 & FT3 are reducing you can be reassured things are improving.
I’m asthmatic so not an option unfortunately. I’ve been referred as urgent to endocrinologist abd just received appointment for July 2022!!
Goodness, that’s a long wait. Mine was 8 weeks and it was delayed slightly because the team were expecting a set of blood test results to book an appointment, but the receptionist refused to book the test because….I didn’t have appointment.
Although apart from finding the right dose to bring down levels into range & testing antibodies there’s not any more a specialist can do.
My specialist has referred me back to GP for monitoring now I’m stable. In the 3 years since I was referred I attended 2x. I had at least 6 appointments cancelled / postponed by them. The rest was done by phone.
Should the GP need guidance they can liaise with specialist.
I agree with PurpleNails , it could be beneficial, but listen to what your body is telling you and make sure you get enough rest,. Try to let travel companions take the strain of making any arrangements if possible. Be prepared to take taxis and use porters for luggage to help minimise stress and retain energy,
You should check your travel insurance covers being hyper and under treatment with carbimazole - there may be a small extra charge. It would also (as always)
be a good idea to take a copy of your prescription with you.
have a great time !
Thank you
Hi, I have been taking Carbimazole for about 4years but only taking 5mg twice a week. I haven’t had any problems with it. I went to USA for 3weeks no trouble.I would get a thyroid test before you go so you know everything is ok.
Good Luck
Thank you
I’m having another blood test Weds so hopefully they should reassuring. Thanks
The concern isn't just the fact that Turquoise52 is taking Carbimazole (which in itself shouldn't be an issue, even at a relatively high dosage, if travelling to a country with decent health facilities and with adequate insurance), but the impact of Graves' itself. She says that she is feeling a 'bit trembly', so appears to be having symptoms.
Yes I feel a bit trembly in the morning as I’m getting ready, after a shower etc. As the day goes on I feel better. I halved my tablet yesterday and took one half in the evening which does feel a bit better. My resting heart rate has gone down a bit to 82 according to my Fitbit. What do you mean about ‘the impact of Graves itself’ ?
A lot of us find our symptoms get worse when we are tired or stressed (either that, or we are more conscious of them when we are tired or stressed, which may amount to the same thing). We can end up with muscle problems and breathlessness which could impact ability to take long touristy walks or keep up with travelling companions . Being impatient with people is a classic Graves' symptom, which may also be exacerbated while travelling,
By the way, if you have a Fitbit presumably you know what your resting heart rate was before you were ill ?
Hi there - yes my resting heart rate was around 60 back in April snd has gradually increased since then. Now 82 - at highest was 87.6 nights away is just with my husband in a hotel with spa and sea view balcony so I can just relax with my book if necessary! We normally camp so it’s a treat! But I don’t want to go if it’s risky.
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