I was diagnosed as hyperthyroid 8 weeks ago. My dr prescribed me with 5mg carbimazole (once per day). I have just had some more blood tests and my TSH has come down but not as much as hoped and therefore he has upped my medication to 3x5mg each day. I am worried this is a big increase and don’t know whether to just move to 10mg instead of 15mg? I am waiting an appointment with an endocrinologist.
My blood results are as follows:
July 2019 Serum TSH level <0.02 mU/L Low
Serum free T4 level = 40.7 pmol/L
August 2019 Serum TSH level <0.02 mU/L Low
Serum free T4 level = 30.8 pmol/L
I’m wondering if any of you could give me any advice on whether to up the medication or whether I should wait to see the endocrinologist?
Thank you for your help.
Becky
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Becky456
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Your figures are similar to mine when I was first diagnosed. My GP started me on 20mcg carbimazole and told me to have a blood test in four weeks. I then got a letter from my endo - I wasn’t due to see her for another two months but she wrote telling me to increase my carbimazole to 40mcg every day until I saw her. Unfortunately I didn’t have further blood tests and so I was quite hypo by the time I got to see the endo.
He told me to stop the carb for ‘a few days’. I stopped for five days and at the same time I was started on 25mcg levo thyroxine- quite a low dose but I was in my mid sixties.
My hospital treats Graves by block and replace so I stayed on the 40 carbimazole and my levothyroxine was increased until my bloods were where my endo wanted them to be and exactly a year after I was first diagnosed I stopped both carbimazole and levo - cold turkey and I’ve been in remission since then - 2013.
It is important to always get a copy of your blood test results with their lab ranges.
I used to keep a quick note every day about how I was feeling. That was helpful because before I went to see my endo I would look through my notes and make bullet points so that I could tell them how I was feeling. I also made notes of any questions I wanted to ask and anything interesting I found out about Graves and kept everything together in a notebook.
My pharmacist told me to take vitamin C so from then on I always took 1000mcg slow release vitamin C plus zinc.
I’d say read as much as you can about the thyroid in general and Graves in particular, start by looking at the thyroiduk.org.uk website, when you see your endo ask questions and take an active part in your treatment. Make sure your vitamins D and B12 and your ur folate sand ferritin are well up in their ranges to help your thyroid.
Thanks for your really helpful reply. Sounds like my dr was really conservative starting me on 5mg then! I’ll do some more research on hyperthyroidism and Graves (which I seem to have symptoms of). Useful about keeping a daily log on any issues because I imagine when you see the endo you forget a lot of stuff. Thanks again. Becky
First, I am sorry to hear you have hyperthyroidism. I have Graves and had a TT 6 months ago. I was on Tapazole for 2 years before that without any side effects and went into remission during that time.
If you think you have symptoms for Graves, please ask your doctor to run two tests: TRAb and Tg. These will detect antibodies for Graves (TRAb) as well as potential markers for other thyroid conditions (Tg). In my opinion, it is essential to find out whether or not you actually have Graves. In that way, you will be on the lookout for certain symptoms, since you are being treated with carbimazole. If your doctor is not willing to run these, I would recommend using Medichecks to get a full thyroid panel that includes T3 as well. In that way, you will have your complete thyroid picture and you can make more educated decisions about your health. If you post your bloodwork results, there are several experts on this forum who can help you interpret them.
Make sure you get regular blood work for white blood count and liver function/enzymes, as these are the key side effects to carbimazole, particularly at higher doses. If you have a severe sore throat or fever, go to A & E immediately and they will do thyroid blood testing and give you something for infection. If you experience palpitations, ask your doctor to prescribe a beta blocker (this also helps your hyperthyroidism in other ways) as well as something to relieve anxiety, as this can also happen with Graves/hyperthroidism.
In the future, be mindful of neck swelling and any lumps on the neck. As well, take note if you have difficulty swallowing, speaking, or breathing. These are often signs of increasing hyper activity and potentially enlarging of the thyroid as your condition progresses, and should be monitored at that time with an ultrasound and potentially, a thyroid uptake scan if deemed necessary.
I wish you all the best as you start this journey. There are not many of us with hyperthyroidism, but we are here on this forum to help.
Thanks so much for that helpful response. I will take on board all your comments. I can see that the additional blood tests you suggest are going to be essential in diagnosing Graves. Also thank you for the things I need to look out for - really helpful.
Hi Becky, like others have said it is really important to take a note of how you are feeling and any symptoms you may be experiencing. I was diagnosed with Graves in February this year and put on 40 mg carbimizole a day. A really high dosage! I personally think my levels were so high because I hadn’t recognised any of the symptoms in myself. I was tired & anxious, not sleeping, under weight. Irritable but I dismissed all these and didn’t book a doctors appointment. I have since had my dosage reduced to 20 mg and more recently to 10 mg. I’ve started to keep a note of how and feeling as I’m having less regular blood tests so want to make sure I recognise any signs my levels might be increasing again. I love this forum. Please feel free to ask me anything
Exactly- the doctor asks you how you are and you say ‘fine’ then realise you don’t and you’ve missed your opportunity that way I used to go through my notes and pick out a few main points I want to talk about and any questions I want to ask. Just bullet points with the main thins though - otherwise I think you would lose the doctors attention.
Definitely! I think I went to my first 3 endocrine meetings and said I felt fine... looking back I wasn’t but didn’t have a clear enough head to remember what I wanted to ask!
Yes think that was a very low dose! My levels were much lower than yours on diagnosis but I was started on 20mg and after trying to reduce the dose a few months ago when I went hyper again am still on that dose. Glad your levels are improving but think even 15mg is low for your levels judging my my treatment from an endocrinologist at a good London hospital?
Thanks, yes, from what I have read on here it sounds like that 5mg is really low. Will see how it responds to the 15. Also be interesting to see how the endocrinologist deals with it.
Hello Becky and welcome to the forum. I was diagnosed overactive thyroid in 2011, and the GP knew nothing at all about this condition (she still doesn't) and I was referred quickly to see the local endo specialist. He was of the old school and explained everything fully and in great detail to me back then, sadly he has since retired and the others in clinic have been less than helpful over the years. I am one of the more fortunate hyperactive patients as I have tolerated Carbimazole without any nasty side effects that many others have experienced. I have refused many times to have either RAI or surgery and not been popular with the Doctors. Many times I have left the clinics in tears but have always stuck to my guns and never want either of these options. This is a roller coaster journey that you are beginning. Listen to your body and post your blood results on here where others who are more knowledgeable than I am will help to guide you at this time. Good Luck, it can and does get a little better in time.
Bless you. Thanks so much. There is a lot to take in and I am trying my best to take things in. I am not very good at sticking up for myself but I can see I’m going to have to learn how to!
Hey really interesting post. I get the impression that the doctors push for RAI or surgery. Is this your experience? Well done for sticking to your guns. Awful feeling leaving in tears (I’ve done it myself when posed with the options of surgery or RAI).
The doctors in clinic do push for either surgery or RAI and say that just taking a tablet a day afterwards will make me feel better....... not the honest truth, they just want to hand back to GP and get us off their list...... inho.
Your body is running faster than normal, you might be eating more, but loosing weight, you are exhausted but maybe can't sleep, your eyes maybe dry and gritty but constantly watering, your running fast mentally, you can' turn off, but very tired and an emotional wreck. Sorry, just highlighting a few of the symptoms you may be experiencing.
It is very important during this difficult period to keep your core support strength strong.
It is very important that ferritin, folate, B12 and vitamin D are kept optimum in the ranges, and not just " anywhere ". Your metabolism is running fast and no matter what you eat there is a very good chance you are not getting the vital nutrients that your body needs for well being.
Dependant on the treatment option with ATDs your doctor and hospital follow, you will be on anti thyroid drugs for about 15 months in an attempt to reduce your thyroid hormone output and maybe bring you back into balance and range, and maybe experiment with block and replace, maybe not, it all depends on the NHS guidelines your hospital follow.
You probably will not have too much control over what they intend to do, but you can keep your strength up as detailed above and you can start reading up about all things Graves as you think this is what you have.
To be diagnosed with Graves you need to have confirmed as positive for either the TSI and or TRab antibodies. This test needs to be run immediately, as your medication is dependant on this antibody blood test.
Graves is an autoimmune disease - it is your immune system attacking your body.
It tends to attack the thyroid and maybe the eyes. The thyroid is a major gland and you could say the " controller of your bodily parts " so when under attack, and going a bit haywire, the symptoms experienced can be diverse and some symptoms considered life threatening.
There is a specialist website, set up and run by a lady who has the disease:-
Elaine Moore went through RAI treatment for her Graves Disease back in the late 1990's. She found no help or advice on this auto immune disease so wrote a book to help other people in the same position as her. She has now set up a Graves Foundation in the U.S. for all things Graves for all Graves patients, families and carers. True the medical protocol will be somewhat different to here, but it is an excellent current research tool, and very much respected for it's full, in depth knowledge and advice, and open to anybody to freely use and learn from.
I hope I've given you a slightly different viewpoint, everything that has been said is valid -
This is an amazing website, it is a safe place to talk through anything -
In the first instance please collect all your blood test results from the doctors, along with the ranges, and note the levels of meds you are taking at those times, and how you feel. These will be asked for by people more knowledgeable than me as we help to explain what it all means as you go through this journey of thyroid hormone adjustment.
I'm with Graves Disease diagnosed 2003 - post RAI treatment 2005 - now managing Graves, thyroid eye disease and hypothyroidism - currently self medicating with NDT.
Hi pennyannie, you second paragraph sums it up! I thought my HRT had stopped working; low mood, tiredness, lethargy etc. Coupled with the hoarse throat, dry eyes, trembling and feeling hot all the time it’s pretty fun isn’t it?!
Your advice looks really helpful. I shall read this through again and take on board some of the insightful suggestions you have offered.
I note from your last paragraph that you now have hypothyroidism. May I ask, were you originally hyperthyroid?
I went to the doctor feeling exhausted, with insomnia and dry, gritty sore eyes. He ran a blood test and phoned me at work the following day to come back in to see him immediately. He told me I had Graves Disease, and asked me to stretch my hands towards him, there was a fine tremor in my middle finger and my palms were hot, clammy and sweaty. He started me off on Carbimazole and said if I was to get a sore throat to go straight to A & E - I didn't have any symptoms thankfully, and was picked up by the hospital quickly for on going out patient appointments and dose maintenance. I continued to work but with hindsight this was probably a foolish thing for me to do.
I learnt about Graves some 10 years after the event, when I became very unwell.
It is an autoimmune disease and can be triggered by a sudden shock to the system like a car accident or an unexpected death. I had been physically threatened and verbally abused by a work colleague. I was the manager, and employed an assistant manager, who one night, when there no witnesses, turned around and threatened and frightened me beyond belief. I reported the attack to my company, went through the relevant channels but it was all a waste of time and we both stayed working there until the unit closed down, some 10 months later.
It was a horrible time for me, and just think, had somebody explained Graves to me, I might have vacated the space sooner rather than later and maybe not ended up in a heap, collapsed on the floor.
Graves thrives on stress and anxiety, and now is a good time for you to start looking at your life/work balance, diet, relaxation techniques, and stand back a bit, and think of, and about yourself, be selfish with your time, and carve out some time for yourself.
You are not invincible, you are ill, and the Carbimazole will help you function on a daily basis and act as a sticking plaster. The issue is your immune system attacking your body and sadly there isn't much knowledge in this area of medicine, so it will be prudent to start reading up yourself as to taking an active role in your recovery.
If you tap on the icon alongside my name that should take you to my profile page.
You then have access to everything I've written on this amazing website. It was reading other people's posts that taught me about my more recent health issues. The NHS believe managing hypothyroid is easier than managing hyperthyroidism - well going by the numbers on this website, it certainly is not, and I deeply regret having the treatment I was given, believing I would be " cured and back to normal " - I had RAI to burn out my thyroid in situ, and discharged back out into Primary Care - so, yes, in the NHS's eyes I was cured as they had destroyed my thyroid so I wouldn't need to see them anymore and I limped along on monotherapy with Levothyroxine which is the standard treatment which I now realise, sadly, doesn't work for everybody.
Thanks pennyannie. You sound like you’ve had a pretty rough time. The incident at work must have been awful, and particularly if it caused the Graves. I work in a stressful environment which has been particularly bad this year so maybe it did contribute to this? Perhaps I do need to think about my future there, as I do find the stress very hard to deal with.
I realise that I am going to need to do some thorough reading to help me to understand this condition. As well as bothering you lot with numerous questions!
Great post! Until joining this forum I wasn’t aware you could get hold of your blood results... I’ve not had sight of mine. I’m under the care of the hospital (GP cannot see results) do you know if I’m able to request from endocrine nurse/doctor?
Yes, I don't see why not - they are your results, and believe you are legally entitled to copies, and surely it should also be that your doctor is kept informed, as your Primary Care Physician. I know when I went through this some 18 years ago, I was managed by the hospital but my doctor was kept in the link.
There are various sites carrying information on thyroid hormone replacement, and suggest you start with the Thyroid uk website.
Also the Elaine Moore website for all things Graves Disease.
Why not start your own post asking your questions - as otherwise it is lost in Becky's and you'll be " stuck with me " and not seen by the many people on this site who may wish to help and share more information with you.
I had total thyroid removal may this year I was diagnosed with graves after several months trying to take anti thyroid meds carbimazol then ptu unfortunately my thyroid went toxic so had to come out.. My gp tested my T3 which was 24.2..high.. I requested a uptake scan also and had my anti bodies check to which confrmed graves.. Are you coping with your symptoms.. Are you feeling hyper???
Hi birkie, sounds like you’ve been through the mill a bit. Hope you’re now coming out the other side? Struggling with symptoms to be honest. I originally thought my HRT wasn’t working. Dr said all was ok, then I entered a very stressful period at work, during and after which I felt awful, hence the blood tests and diagnosis. Looking at the symptoms of hyperthyroidism I can connect with most of them, it makes sense.
My illness was put down to the menupause eventho it wasn't.. I started it at 42 and my symptoms were not bad just a hot flush that lasted a minute or so bit of a fast heartbeat small sweat under lip and that was it... But this was worse I sweated constantly my whole body felt like I was shaking my heart went off the scale and I was on the loo all day.. And exhausted.. The symptoms for me were awful I was housebound for nearly 2 years took over another 2 to get diagnosed. You will find you may need to do quite a bit of homework on the subject of hyperthyroidism it's best to be armed than not good luck.. 🤞
I've had Graves' disease for nearly 10 years and have been in remission for a year.
If you do have confirmed Graves Disease then your Gp/Endo should be medicating you according to your FT4 not TSH. 5mg is a very small dose,more like a maintainance dose. It's possible 15 mg may well not be enough, so I'd consider getting bloods done in 4- 6 weeks time just in case, as you don't want to chance going hypo. It's advisable not to change dose without having bloods done first otherwise you'll not know the level you were at before the change. Have you had FT3 tested?
After your Endo appointment you may stay on carbimazole alone ( titration method) or Block and Replace.
You've been given some very good advice by fellow posters. I whole heartedly agree with Pennyannie about Elaine Moores website. Elaine's forum has been a real blessing in helping me understand this disease and has helped me on my long journey to remission.
Hi kaz86, I haven’t had my FT3 tested yet, but I note the GP has requested them for my next blood test in four weeks. From all I have read on here it definitely looks like the 5mg is very low and as you say the 15mg might be too low as well.
That's not a very high dose. I was on 30mg for quite a while then gradually titrated down to 5mg daily after 2yrs. Have you been referred to an endocrinologist ? Did your GP test your antibodies? You will need regulat blood test initially and then they will become less frequent as time goes on.
Hi Becky, I hope I haven't missed any other answers mentioning this but your results do not mention FT3 being tested. I thought FT3 was tested as standard for Graves and certainly my tests have always included FT3 alongside FT4 and TSH and when the surgery/lab have messed up I have had to have fresh tests (Derriford hospital, Plymouth)
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