I've just been diagnosed with graves disease and to be honest I'm struggling with coming to terms with this. Some numbers:
Tsh <0.01(has been since very first blood test)
T4 rising...last count was 35 (can't remember full range..top number was defo 19.something)
T3 3.5 (1- 2.5)
Thyroid peroxide ABs 319 (<6.0)
Thyroid receptor ABs 4.5 (0-1.9)
I have a very slight goiter, insomnia, tiredness...but no palpitations, no weight loss, no eye problems. My GP referred me to specialist in Nov 2017 but no appointment yet. GP referred again...got letter from Endo saying sorry...cant see me for another month or so and GP should start me on 40mg carbizamole. Which he did...so i picked up the tablets a couple of days ago...but haven't taken them yet. I feel like I'm in a bit of denial over what's going on with me...but feel I've not had chance to really talk it all through with someone in the know as haven't seen an Endo yet....Hence the post...just looking for some support...
Thanks
xx
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Gymgirl
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I was diagnosed with graves in May 2016. I was on 40mg of carbimazole, it took about 4 months for my bloods to show any sign of improvement. Then I was put on a block and replace therapy which consisted of thyroxine and carbimazole for 18 months. My bloods came up all within normal ranges then I was told to stop all meds. I stopped meds last October. Picked up a virus in January and I’m back where I started. My symptoms are tachycardia, hand tremors, weight loss, hair thinning, feeling like of tightening around my neck/throat. It’s horrible as we don’t necessarily look ill so it’s hard for people to sympathise what we feel or going through.
I would take the prescribed dose of carbimazole that your Gp has prescribed until you see your endocrinologist. Where are you living? Hope my experience of it all has helped a little
Nice name! I had a somewhat similar presentation when I first got diagnosed and if you have limited symptoms apparently that puts you in a better position to get a good response from medication. First things first, check out Elainemoore.com. She is an expert in the field of graves and goes through everything in a FAQ set of pages- really useful. If you can see the endo in one month that may be good because you may have responded. It takes 4-6 weeks for the antithyroid to take full effect as it takes this long for the thyroid to release its excess stores of hormone. However once it responds you'll probably need your dose brought down and so if it hasn't responded by the appointment get them to schedule a blood test at the 6 week mark and ask your endo for a plan for when your ft4 and ft3 comes into range.
I think the most important thing is to get info and start to feel you understand it, which is why I always send everyone to Elaine Moore's website. She's a pharmacologist so she knows a lot about drugs and the body but she's also had graves and made it her mission to educate others so no one else is threatened into life changing decisions like she was without any information.
Once I learned more I felt confident challenging endocrinologists or gps who try to push me around. The thing is with proper treatment this is a self-limiting disease i.e. It will go away!! So it is overwhelming but fear not, read up and it'll feel much less overwhelming i am certain!
Hi there gymgirl read as much as you can about your disease as gps tend to know very little about the thyroid and endo's are a different story, i waited around 3 months for my appt. I was diagnosed hyper and hashimotos back in july and graves in november, 6 months later i am still not working due to feeling poorly, i have my good and bad days still but it is a very long battle with your own body and anything to do with the thyroid does not happen quickly! Take the carbimazole but remember carbi takes around 4-6 weeks to kick in and most people say they will feel a little easier but then you can start to go down hill a little and feel worse, you will need monthly bloods done to check that your dosage is right and also always get copies of your bloods.
It is normal to feel overwhelmed with any diagnosis at first and you will get to terms with it, rest is very important with being hyper as the body is under alot of pressure particulary on the heart. This disease is very much a rollercoaster ride as you can be ok one min and then plummet down again- im on 2.5 mgs titration dose now and still cant find a dose that measures my levels out yet, its a long fight but i remember the good days ive had and that gets me through. Get gp to sign you off work so you can rest up lots.xx😊
Hi, I sort. Of know how you feel only I was ill and had had the run around from various doctors because they couldn’t join up the various symptoms and see what was star8ng them in the face, that went on for so long before being diagnosed so by the time I was told what I had and given carbimazole I couldn’t take it fast enough.
There was a three month waiting list to see an endo when I was first diagnosed and I felt very ill. My GP started me on 20mcg straight away and contacted my ends to be. I was told to come back for more blood tests in four weeks.
After that I got a letter from my end telling me to increase to 40mcg a day. I did that for the next two months, unfortunately without another blood test so I was pretty hypo by the time I saw my endo and started on levothyroxine so you might want to ask for a blood test every four weeks or so. Your endo sounds like they are on top of your treatment so that’s good. I found it odd that I was going to have to wait so long for my appointment when I was really very ill but it worked out ok.
The carbimazole will help you on your road to recovery. Make sure you read the patient information leaflet that comes with the carb or google for one if you aren’t given one by the pharmacist. You need to watch out for sore throats etc in which case follow the instructions.
When I started carbimazole my pharmacist came out from behind the counter and told me to take a high dose of vitamin c along with the carb so I always took 1000mcg slow release vitamin c with zinc. I always felt well on it so maybe it was the vitamin C - who knows.
I see you are called Gymgirl - I was incredibly tired so I rested as much as I could and did as little as possible. I did keep going to my gym because I enjoyed it and liked the people who went there but I turned everything down, I was just ticking over really. I also kept up my Pilates - my teacher is a physiotherapist and she liked after me really well. My first email to this site was to ask if I would ever feel normal again and yes, I do. I’m back to long distance walking again and I feel healthier than I did before and I’ve gone totally gluten free which has drastically reduced my thyroid antibodies.
You should be fine. You needn’t have eye problems. Always get a copy of your blood test results. I kept a little notebook and jotted down quickly how I felt each day. That was useful, especially once I started on levothyroxine as well as the carbimazole- known as block and replace treatment - you probably w8nt find out until you meet your ends how they are goong to treat you - for when I saw my end or GP.
Why so long to see a doctor? That’s terribile. I live in USA and some specialists are hard to see but you usually can get an apt. Within 3 weeks. It’s not fair you had to wait so long. I hope you are feeling better now
That was just the time it took on the NHS. Most people who posted on here with the same thing were waiting the same time for an appointment.
It’s not as bad as it sounds though. My own doctor had started me on carbinazole, after four weeks my bloods were done again and my endo wrote to me to tell me to increase my dose. There was nothing else that could be done other than wait for the carbinazole to stop my thyroid over producing and for my bloods to get to a better place so that they could start the replace part of my block and replace treatment.
I was told by my GP and my pharmacist what to look out for when I started carbimazole and what to do if I was worried - agranulocytosis being the worst problem. I had a sore throat one day, got a same day appointment for a white blood test and knew next day I was fine so although I didn’t see the ending I was well cared for.
Writing this although I was shocked at having to wait for so long I can see why there was a three month wait to see the endo because it actually took three months for the carb to stop thyroid production and as my hospital treat by block and replace they couldn’t start the replace until the thyroid production was thoroughly blocked which took the three months anyway if I’d had any problems I could have seen my own doctor right away.
By the end of my treatment I felt there was no real need to go and see an endo. All they needed to see was my blood and my treatment depended on that - they didn’t really need my body - they could just have sent me a letter.
I’m fine now, so far I’ve been remission for five years, long may it last
Hi gym girl.... so 9 months later after diagnosis I have finally come out of denial that I have this illness!! I was diagnosed with hyperthyroidism with slightly elevated antibodies for both graves and Hashimoto!
I too did not see an endocrinologist until 4 months after my diagnosis and unfortunately haven’t had the best experience with them! I was put on 20mg carbimazole by my gp and have been decrease along the way. On my first endo appt she praised my gp as to how he had controlled my thyroid with carbimazole over the 4 month waiting to see her.
It is so daunting this journey everyone is different, research as much as you can there are some great recovery stories around 😊
I was a long distance runner and crossed trained unfortunately my trainers have been put to one side at the moment but that’s great to read that fruitandnutcase has returned back to the life of exercising.
Yoga and meditation is great but listen to your body and rest when you need this has been the biggest lesson for me (I used to be 100mph and resting at 9pm everyday before I go to bed and then I got sick!) and Rmichelle has helped me realise this!!
I have learnt so much off of this site everyone is so helpful so ask loads of questions 😊
I was diagnosed in October 2015. I had lost two stone in a month, was having palpitations and hand tremors, I lost a lot of muscle mass and was very weak, couldn't sleep, couldn't tolerate heat, I was very forgetful and got easily confused, I was experiencing depression and anxiety.
Originally I was diagnosed by a nurse practitioner at my G.P.'s surgery. I was referred to an endocrinologist for an emergency appointment and prescribed 20mg carbimazole. I was meant to see the endo in December but he quit! So my appointment had to wait while an new endo was appointed! I didn't see anyone until February. At that point my carbimazole dose was increased to 40mg daily.
I had some problems while on the medication. Muscle pain being one of the worst things. I felt dreadful for a long time. Eventually my bloods showed that I was in a position to begin block and replace. I started taking levothyroxine alongside the carbimazole. After 18 months on the treatment, when my bloods were looking stable, I was able to stop the meds.
That was back in April of last year. I still have regular blood tests to make sure all is well, but I haven't well this well in a long time. I'm still trying to lose some of the weight I gained while on levothyroxine, and I'm still not as strong as I once was, but I'm getting there!
The treatment can be difficult. It's not a walk in the park by any stretch of the imagination. But if you persevere you can become well again. Keep you chin up! This forum helped me a lot. There are loads of helpful and knowledgeable people here who will be only too happy to give you advice.
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