Recently diagnosed

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Hi guys, I have recently been diagnosed with Graves’ disease (1.5 weeks ago). I am on Carbimazole  20mg per day and Beta Blockers. Obviously the symptoms are awful but mine are definitely much worse in the morning such as very high heart rate and shaking hands. The symptoms ease off as the days goes on, I was just wondering if that’s common as my endow didn’t really explain to much to me. Thank you guys 

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  • Posted

    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.

     

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    • Posted

      Hi there

      Thank you for the encouragement, I have only been suffering for about 8 weeks but I have already had enough of it, what an awful illness it is.

       I have been taking the Carbimazole at the same time - 6.00am. I will look for some multivits today.

      Thanks again. 

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  • Posted

    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

     

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    • Posted

      Hi Clare

      Thank you for sharing your situation. It does help to see the outcomes of people suffering with similar issues. The weight loss was quite dramatic for me too. I used to a 15 stone muscle bound gym freak and now I am under 12 stone and struggle to pick up my 2 year old. It is amazing how quickly (6 weeks for me) a poorly functioning thyroid can dramatically change your life. 

      Dean 

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    • Posted

      This was useful thanks .. what dose of L- carnatine did you take a day and what was the exact level of improvement ? From what to what in what time frame?
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    • Posted

      I started off taking 3,000 mg of Regular L-Carnitine once a day at the same time I took my Methimazole and other meds.  Within a month my TSH rose to 0.12.  I stayed on that dose for a few months and then I dropped the dose of Regular L-Carnitine to 1,000 mg and took 1,000 mg of Acetyl L-Carnitine along with 1,000 IU of Vitamin D and my meds as usual and my TSH rose to 0.70.  Stayed on this dose and my TSH rose to 2.5 but Free T3 and T4 dropped right to the bottom of the range but thankfully never out of it.  Then dropped the Acetyl to 500 mg and TSH went to around 1.5.  With the first increase in my TSH my meds were reduced from 10 mg to 7.5 and with the next increase down to 5.00 and so on.  There was a LOT of adjusting of both meds and carnitines to keep my labs where I wanted.  I cannot state that enough.  Not so much the Regular L-Carnitine but Acetyl L-Carnitine is extremely sensitive to lab increases and decreases because it crosses the blood-brain barrier and takes everything else you are taking with it.  Others on the Board who have tried it just took the initial dose and never made any adjustments and they went hypo.  The Regular L-Carnitine helps with muscle pain especially and the Acetyl helps with increasing TSH and as a result being able to lower the meds dosage.
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  • Posted

    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

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    • Posted

      Hi Linda

      Thank you for taking the time to reply with such useful information. I will definitely look into the vitamins and supplements. 

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    • Posted

      You are absolutely right about the supplements. I am not on any medications for the thyroid , still have many symptoms, but my heart is no longer thumping and I do feel better when I take supplements. I do take acytl L-carnitine,  instead of the regular L- carnitine, and zinc, along with fish oil along with the others you mentioned. It really makes a world of difference.
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  • Posted

    Welcome to the GD club. I was diagnosed July 2016... it’s a process as other mention below.  The hardest part is taking medicine everyday and feeling tired and just “off” in general. 

    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. 

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    • Posted

      Hi Tracy

      Thank you for the kind words. I have been on meds for nearly 5 weeks and am feeling better but still have off days (today as is one of them) which is awful as you start to feel like you are making progress and then you get knocked back down again. I will try my best to stay positive. 

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    • Posted

      Hi Dean, I had the same experience in up-and-down days when still suffered from GD, even after taking ATM for months. It's a long journey to be fully recovered from the dreadful disease. One thing you may want to remember is there's the help from changing lifestyle for conquering the disease -- once you gain progress/benefit from this help (improving symptoms/conditions), don't get too excited and return to the old behavior/routine  (e.g., diet, heavy exercise, head on to stress, etc.) This is hard, no short-cut path for us (at least for me). Wish you get better soon.

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    • Posted

      Hi Mike

      Thanks for the reply. I am just starting to see that this disease isn’t going to just go away quickly or easily. I have changed my outlook and won’t get too exited when I start to feel better. I will keep up with the healthy eating and I am hoping to be able to start exercising again soon. 

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