Recently diagnosed

Hi

Firstly a bit of encouragement for you.  Carbimazole takes about6 weeks to get on top of the symptoms but you should start to notice a real difference at around week 4.  Stuides show that thyroid levels are higher in the mornings which will be one reason why you feel worse in the morning.  The other reason being that you will be more anxious when you initially wake up.  Stick with it, be absolutely compliant taking the Carbimazole and try to take it at the same time each day.  I take mine on waking at 6.15 and then don't have caffeine or anything to eat for an hour after to ensure it is fully absorbed.  Whilst you are newly diagnosed your whole body is out of sync.  None of your blood tests will be normal and whatever you do don't let the GP do a glucose tests on you ... mine nearly killed me!  Graves messes with your metabolic rates so your blood sugar will be all over the shop until the Carbimazole has kicked in ... another reason why you feel worse first thing.  Take it easy, don't over do anything, invest in a good multivit preferably with probiotics and you will get there.

Hi Dean,

I was diagnosed in May/ June after being ill for a while but unsure why. I had thyrotoxicosis and was having palpitations, shortness of breath, achy legs and arms due to muscle wastage, tremors, swollen legs, insomnia and I lost a stone in 3 weeks. I was really ill and was really scared as I didn't know why. My doctor spotted the symptoms straight away and put me on Carbimazole (40mg) along with beta blockers and Selenium for my eyes as this can be a problem with Graves.

Claire64756 is absolutely correct - stick with the Carbimazole. I started to feel better after a month and things have improved all round. I no longer need beta blockers as I rarely get palpitations, the tremors have ceased, the weight loss has stopped and I now sleep well. I have slowly built up my muscles and from being in a position of struggling to walk up stairs, I can now walk my dog and I go swimming several times a week. My thyroid levels were taken to below normal so that I am now on 'block and replace'. This means that the Carbimazole has stopped all thyroid hormone production and I take Levothyroxine to bring my hormone levels to the normal range. This seems to be working and my tests show that everything is where it should be.

I do still get some times of fatigue and at times I still gets aches but this could be down to other things.

If I think back to how ill I was feeling and how worried I was about what was happening to my body, I have come a long way. Stick with it and give it time.

I hope this helps,

Clare

Hi Dean

I was very fortunate when I was diagnosed that I was diagnosed early and my labs, aside from TSH, were not too high over normal (they were about 10 to 15 points over for FT4).  My TSH however, was less than 0.001.  I was started on 10 mg of Methimazole (same as Carbimazole in UK) and immediately improved in symptoms but after 2 years on this dosage, my TSH would not rise from less than 0.001.  So I did some research and found an article about the benefits of hyperthyroid patients using 3,000 to 4,000 mg of Regular L-Carnitine in addition to any other treatment they were given and I asked my boss, a genetic metabolic physician about it, and he said "Well it won't hurt you".  So I tried it and my TSH rose for the first time to 0.12.  Still not in range but at least in the right direction.  I also found out I was deficient in vitamin D and vitamin D is extremely important to good thyroid functioning so added vitamin D, 1,000 to 5,000 IU to my regimen.  Also added Magnesium 200 mg.  Added one other supplement that was very important to my success and my TSH finally got into the normal range.  I remained on a low dose of Methimazole (as my values improved, my doc would lower my dose 2.5 mg at a time until I was taking 2.5 mg 3 or 4 times a week for about 10 years and finally this year stopped it altogether in April.  I think the loss of important vitamins, minerals and amino acids happens to everyone who has hyperthyroidism and these need to be replaced.  Unfortunately, that is not part of the medical protocol and is not recognized by physicians as part of this disease so I am so glad I found this out.  Because of this, I believe patients need to become empowered patients and learn all they can about their disease.  They also need to develop a cooperative relationship with their physicians and always let their docs know what they are taking besides the prescribed medications

Your hands will stop shaking. If you have had hair loss, it will grow back. If you have Graves eye disease (I got that gift too) you can have surgery and fix that...but your life is for every changed because you will probably be on this medicine forever. I started with 60 methmazoil and I’m now on 5 ml a day. Some days you will be bad but most will be good. I have also gained 10lbs and I’m doing everything thing I can other than stop eating completely not to gain weight and every month...I do!!! I’m sorry you have GD...I think stress has a lot to do with it so try stay calm and at peace.