I'm a newbie here - just diagnosed with Graves' disease

[W0l3ryhealth]

Hi everyone, Firstly can I say this forum is great - so good to be able to talk to people who understand this stuff!

I have been seeing my GP about hyperthyroid symptoms for the past month or so - she put me straight on Carbimazole 5mg 3 x a day and a beta blocker 3 times a day (changed to Propranolol 40mg 3xday today, up from 20mg). Blood test results came back and they reckon I have Graves' Disease. No sign of thyroid eye disease yet. Blood results were TSH <0.01mIU/L (0.35 - 4.94) - thyrotoxic, T4 33.7 pmol/L (9.01-19.05). Don't feel as bad in myself, shaking reducing a lot, palpitations reduced but still fast pulse rate (hence the beta blocker). Question is: are my results typical for first diagnosis? Seeing consultant in August.

Thank you and look after yourselves all of you.

[purple64]

I went to my GP in March this year as I couldn't stop shaking. T4 was 32 and was put on 15mg Carbimazole straight away. Can't take beta blockers as I'm asthmatic. Second blood test she told me I had Graves. Palpitations slowed down reasonably quickly. Hospital appointment is in September. Carbimazole was

put up to 30mg but has now been dropped back to 15mg. Next blood test on Monday so will see what happens then.

[W0l3ryhealth in reply to purple64]

Thanks for replying Purple64. Looks like Carbimazole is working for you. Best wishes and take care.

[purple64]

Sorry didn't really answer your question🙄I would say your results were very similar to mine but we may all have the same disease but we are all different. If that makes sense. Look after yourself, not always easy I know but sometimes we have to learn to say actually I can't do that. And need to rest.

[W0l3ryhealth in reply to purple64]

Thanks again. Comforting to know someone else had similar and it improved fairly quickly.

[Silver_Fairy]

Carbimazole, in some people, can work very quickly at bringing down levels. Make sure you get print outs of your test results so that you can see if you may be tipping over into 'hypo'. Get your GP to test every 6-8wks.

The only way to know if you have Graves is to test for antibodies.

[W0l3ryhealth in reply to Silver_Fairy]

Thanks Silver_Fairy, that's kind of you and very helpful. Blood tests booked monthly over the summer til i see consultant for the first time. And i think they did test for antibodies which is how they knew it's Graves, but I'll double check on that one.

Thank you and take care.

[deesbees]

make sure you get your ft3 and ft4 tested too and get some good iron supplements - I have used solgar gentle iron for about 20 years now and they're good - saw my Hb rise from 6.6 to 8 inside a month whilst preggers with smallest! (midwife recommended it!) and bear in mind TED doesn't get all of us Chuck; I've a slightly wonky eye but its barely noticeable. Good luck honey, sounds like you have a decent gp-huzzah! half the battle won. xx

[W0l3ryhealth in reply to deesbees]

Hi Deesbees, Thank you so much for your encouraging reply. Will definitely ask about ft3 and ft4 testing when I see GP (no idea what they are but sounds good) and will ask about iron supplements - she hasn't mentioned anything about that or vitamins to me yet. Good to know about TED too - I've had a squint since I was 12 and my glasses have prisms in to help that. Maybe that was an early symptom of all this stuff? Thankfully GP is lovely and suspected overactive when I first saw her. Work colleagues not so understanding - got told today "Yes it has been noted you've not been here as much" - after I'd taken 2 days off for chronic bad tum caused by either infection or the meds and worked from home at the beginning of the week whilst i saw GP and optician. One day at a time.... Good luck to you too, sounds like you've had a long time with this.

[deesbees in reply to W0l3ryhealth]

Ah ok. FT3 and FT4 are your 'free' or blood concentrations of thyroxine. A suppressed or very low TSH (thyroid stimulating hormone) and high FTs is what we hypers have usually and those readings are the first diagnostic tool for hunting a cause of symptoms such as tremor,mood swings,aches,joint pains,itching,palpitations, heartburn/reflux,panicky moments,eye pain,dry mouth/eyes and fequent bowel movements - plus a few weird ones (not in textbooks :-/) like internal buzzing either generally or locally, tactile sensations like a cold or hot local area (i get the sensation of cold water being splashed on my back which makes me jump lol) tinnitus,altered sense of taste and smell, body odours,frequent cold sores,(likely down to being run down) and others that the folk here might be able to mention..because the metabolism is faster, the body discards nutrients as it cant absorb them but also, cellular turnover/lifespan is shorter too. Quite possibly your gp has not mentioned your nutritional status as the bloods can indicate what impact its all having on you physically. Not every hyper has anaemia but it is common, and id hope you have your blood results now. Calcium,vit D and iron are the usual starters as these are often not in range,and low calcium means your poor old body will sneak it out of bones and teeth as its handily available from there...

Sorry to hear your work colleagues are lacking in empathy - hopefully theyll change attitudes if they understand how rough this problem can be. Have you had a referral to endocrinology yet? Hope it all gets easier - it took a while but i feel fairly human mostly and do as much outdoors as poss (bees, dogs, gardening or just sat on mi arse outside lol) as that helps with vit d too. Fingers crossed for you honey, do your research if you are offered surgery or radioactive iodine- both are very final. I went with carbimazole then propylthiouracil (ptu for short) and am glad i didnt jettison my thyroid - mine just isnt that unstable and ive enjoyed periods of remission so look into Elaine Moores stuff as she explains it well.

Hope you get well soon! x

[W0l3ryhealth in reply to deesbees]

Thanks so much. That really helped. Feeling ok on current meds. Bloods next week. Exciting!! Take care too x

[Alexkjones]

Hi. I've had graves for 3 years. I was tsh 0.02, t3 about 25 and t4 over 55 at diagnosis. So slightly worse than you. Was on carbo and propanadol for 3 months same doses as you. I then tipped slightly into hypo and felt very down. So make sure you get regular blood tests to change your meds as you go along with guidance from the Endo. I have my Endo's email address which is a great way to communicate. I don't abuse it and she offers great reassurance. It takes at least a month to see any major changes in bloods when you change your meds. After the 3 months I went onto block and replace 40 mg of carbo a day with 100 mg of Levo. Did this for about 12 months. Didn't get on so well with it had lots of like panic attacks. Then tried for remission for 5 months and it failed. So have now been on titration method with carbo alone for a year. Started at 20 mg a day April 2016. Now on 2.5mg of carbo a day and feeling okay. Have some eye symptoms every now and then so maybe ted on its way. Aiming for another remission attempt at Xmas. So fingers crossed. I'm 42 so I suspect peri menopause is also playing a part here. Good luck. You will experience lots of feelings you haven't had before on your journey. Some will feel quite bad and others more subtle. Just give yourself more time to relax. Try and remove stress as best you can too. I have also found reducing caffeine helps and alcohol. Don't have many piss ups these days. I do however still smoke. I know it's bad but somehow it helps me cope. Feel free to ask any questions. I know how it feels when you get first diagnosed. Alex

[W0l3ryhealth in reply to Alexkjones]

Thanks very much for your helpful and reassuring reply Alex. I'm seeing the GP tomorrow to discuss blood test results from yesterday - hopefully going in the right direction like last month - then off on hols for a couple of weeks so might get to relax! Good luck to you too - sounds like they're looking after you well but not a straightforward journey, is it? Wolery