5wks into graves desease treatment

[Alibrett50]

7wks ago I was treated for an aliiergy, my eyes were painfull/red and lids swollen.. I felt quite unwell and when my ankles and feet swelled I took myself to A&E. I was checked for heart failure via a blood test and xray, very worrying. They were happy to let me go and said results for thyroid would be with doctor on Mon next day. Positive so put on 5mg carbimazole twice a day, had an edg...... Fine, and another scary blood test specifically for heart failure. Phone call 2days later from doc to increase dose to 40mg carbimazole once a day, consultant had written. My T4 levels were 86.9. I haven't worked for a month, my eyes are awful and don't see opthalmology until 12th sep. So worried today I have to have a heart echo, they found a slight murmer and picked up h failure it should' go when levels drop but so so worrying I'm 56

[Greekchick]

Hi Alibrett,

I’m so sorry you are feeling so bad. It sounds like you have Graves eye disease.

I am going to ask pennyannie and ling to respond to your post, as they both have this condition and have much more experience than I do. I also have Graves and had a TT almost 6 months ago. Carbimazole can be a tough drug to take - make sure if you get a sore throat or infection you go to the A & E without delay. Your heart condition should be addressed as soon as possible since you have Graves and it can in some people lead to AFib with our disease. At least they picked up your heart failure - not all docs get it when they see the swollen ankles and feet.

Wishing you all the best and sending good thoughts your way today.

[Alibrett50 in reply to Greekchick]

Thank you for your reply. Echo result was good, all looked normal today just has to be thoroughly checked, such a relief. Its so nice communicating with fellow sufferers this also brings relief. Wishing you well x

[Greekchick in reply to Alibrett50]

You too - hope you get better soon.

[pennyannie]

Hello Ali

Graves is an autoimmune disease and for some reason your immune system has decided to attack your thyroid, and when the thyroid is attacked and goes a bit haywire, the symptoms experienced can be frightening and some even considered life threatening.

I've read Graves can be triggered by a sudden shock to the system, like a car accident or an unexpected death. In my case I was physically threatened and verbally abused by a work colleague, obviously this came totally out of the blue, and roughly four months later I was diagnosed with Graves Disease. That was back in 2003 and I have, basically learnt of my situation back to front.

I read with Graves very few patients present in the same way, with every one's journey being somewhat unique to them, which can make this disease difficult to understand in the mainstream NHS. I had dry, burning, gritty eyes, insomnia and exhaustion and once on Carbimazole I started to feel better. There are options to Carbimazole if this drug causes you any problems, and if you develop a sore throat, I was advised that I should immediately go to A & E.

Graves tends to thrive on stress and anxiety, and though I'm writing this and telling you not to worry, I fully understand that it's not that easy, and you will be nervous and upset, and my consoling words futile, at this point in time. Some people do also get prescribed a beta blocker to ease their symptoms, and think your doctor might help you with this, if it hasn't already been suggested.

In order to maintain your strength during this difficult period it would be a good idea to get your ferritin, folate, B12 and vitamin D tested. These need to be optimal rather than simply " just in range " , as if your body clock is running too fast there is probably a chance that you will not be optimising these core strength minerals and vitamins from your food. Conversely the Cabimazole should start to " slow you down " by blocking production of the thyroid hormones, and if your metabolism slows down too much, the same under utilisation of vitamins and minerals can happen.

I think if you see your doctor he will be organise the above blood tests, and suggest you also obtain copies all your blood test results, along with the confirmation that you do have Graves Disease and have proved positive for the TSI or TRab antibody, so you can monitor and follow your own progress. It will also be asked for on here by the " specialist thyroid admins " who answer the questions and are better able than me.

Your doctor might be able to fast track your eye consultant appointment and suggest you also confirm with your doctor that an appointment with a hospital endocrinologist will be forthcoming, as it is normal procedure to be monitored and dosed accordingly, by the hospital.

If you can stand to stay on your lap top longer there is a website simply dedicated to all Graves patients. The Elaine Moore website, is stateside, so medical protocol might be slightly different, but this lady has dedicated her life to research on this disease since finding herself with Graves back in the 1990's and finding little help or understanding herself. Things have moved on since then, obviously, but the site is most informative and is well respected with open forums, much like this amazing platform.

P.S. If you have, or are offered any eye drops, please just make sure everything you are using is preservative free.

[Alibrett50 in reply to pennyannie]

Thank you so much for your reply. This has been so informative I now understand far more. You have given me lots to want to ask my doctor ie beta blockers. We lost our 18yr old dog last Friday, heartbreaking....... And I have noticed a step backwards in how I feel. Saw opthalmology yesterday, they seemed very thorough and genuinely caring. Thank you so much for your reply and apologies for late reply (this white hurts eyes to concentrate)

[Maspaws]

Hi, have the same problem. Eyes are sore and slightly swollen, painful. Went to ophthalmologist and he was of little help. Although he had Graves also, suggested high dose of Omega 3’s, some help but still hurt. Then I read article about acupuncture for Graves eye issues. Being desperate for hep made an appointment and happy to say feeling much better all around. I do believe that Eastern medicine can help when are drug culture fails. I know you are very new to this disease and it will be a lot of trial and error. But, if you get no relief give acupuncture a try. Of course insurance rarely pays for it, but the relief is worth the cost. I feel so much better. Good luck and as others said try to relax that seems to help UCD.

[Alibrett50 in reply to Maspaws]

Thank you, it feels helpful to even just communicate with fellow sufferers to be honest. I googled and bought myself selenium supplement but will also get omega 3. Also we have an acupuncture surgery in our village

[Maspaws]

It’s scary to work through. The other thing to remember is it takes time. Nothing works immediately, but it does slowly get better. Make sure your omegas are high quality I take 2500mg a day. Take some B12 to help your energy levels. I was just exhausted. Hang in there you will start to feel better. Eyes my big problem but feeling better with acupuncture. Hope you can give it a try. Good luck..

[Erin60]

The company Scope eye do a very good omega eye, it contains therapeutic dose of dha x4 a day. I’ve found they have been very helpful, I have Graves and have a few posts here.

Yes definitely stress is so bad for Graves but here’s the rub, Graves makes you anxious and stressy by the nature of the beast and the attack on the body so it’s like being geared up and ready for any anxiety to takeover and makes one like a sprung coil waiting to pounce on that daily. I found it very hard to control but now I do and succeed occasionally, for example:

I hear something sad/stressful etc I feel the anxiety rise beginning to surface first through my body and now at times I say no ! That’s not happening. I make a decision then and there. 1. Do something? 2. Don’t do something. 3. Don’t allow the body to take over and send me into a frenzy because it was so detrimental and the after consequences are so far reaching.

It’s hard to know what comes first but I had to become the chairman of the board (part time) of my body and mind.

[Alibrett50 in reply to Erin60]

Thank you for your reply. I will look into the omega eye. Oh yes I badly need to control stress and my reaction to it. More so even people close need to stop letting their niggly nasty frustrations out on me. But when I mention it makes me feel more ill.... They shout some more