[AlexD]

#1058915

After about two years of constant fatigue, tremors, insomnia, headaches, palpitations, anxiety, concerned about extreme muscle weakness I finally went to the doctor. To cut long story short, in November last year I was told I have Graves Disease. TSH 0.01 (normal 0.30-5.5), FT4 60.4 (normal 9.0-24.0) and FT3 over 46.1 (normal 2.5-6.5). My GP put me on 120mg a day of propanol and 45mg of carbimazole.

Slowly, in the last couple of weeks I started to feel ‘better’. Or at least less tired and my heart beat is more or less in normal ranges, down from 140. However, even though I lost my appetite, I seem to be putting on weight constantly. After being 49-52kg for 12 years, now I am 58-60 kg and no matter what I do I can’t lose it. Also, my legs started to get very, very itchy, close to feeling like ripping my skin from how bad it is and it feels like fine lumps everywhere. Lately, while I am still not getting any muscle tone back, the slightness movement causes my muscles to pull and cramp. It does not last for very long, few hours, but the pain is excruciating. Even simple things like putting on my clothes pulls my muscles… Is this normal?

A month ago at the last labs, my levels were only slightly down… To be honest, I just don’t know what to think. My moods seem to be slightly better, the pulse is mostly normal and the tremors improved. I have more energy then I did in a long time, but I still need to lie down during the day. On the other hand, my eyes are still a bit swollen, I still have a goiter, still suffer from insomnia and the itchy legs and muscle cramps are new. How ‘normal’ is this? Am I getting better or worse?

[Kimberly]

#1170923

Hello and welcome!

I would mention the itching and the leg cramps to your doctor or your pharmacist. Itching with hives can potentially be a side effect of anti-thyroid drugs, but itching alone can also occur when we are hypER.

Patients respond very differently to anti-thyroid drugs. Some patients see their levels fall quickly, and others find that their hyperthyroidism resolves slowly. One issue to look at is whether you are eating major sources of iodine, such as the seaweed wraps that come with sushi, as this can potentially interfere with the effectiveness of the ATDs.

When you say your levels are down slightly, make sure that your doctor is looking at T4 and T3 and *not* just TSH, which can remain suppressed for quite some time in Graves’ patients.

For patients who lose weight while hypER, weight gain can be a sign of returning to good health. However, some patients (I’m one of them) struggle with weight gain above and beyond what was lost while hypER.

During a panel discussion at the Foundation’s 2009 conference in Charlotte, one of the doctors on the panel indicated that it’s possible there might be a “resetting” of one’s metabolism following thyroid issues. However, loss of muscle mass could certainly be a culprit as well, as muscle is “metabolically active” tissue that burns calories even while at rest.

Your #1 priority for now, though, is to get your levels stabilized, which will get you back on the road to good health. Please check back and let us know how you are doing.

[francoeur]

#1170924

hi am new to this forum i have greves diease thyroid was removed 6 months ago and had op regarding your poblems most of these related to me also my thryroxene dose was to high it was awful doctor said i was ok on correct dose i knew i wasnt saw a specilist who dropped my dose even though my levels said i was ok regarding this am now much better good luck

[AlexD]

#1170925

I have days when I catch glimpses of my old self: happy and active… Today I woke up screaming as my neck and leg muscles cramped in the same time… Simple things like putting on my seat belt or getting dressed, or even gently changing my position are becoming scary because I don’t know when will I get another spasm…

Now I am back to feeling exhausted all the time… I have marks on my legs from where I scratch, but even with calamine lotion is so bad I just feel like ripping my skin off… My GP says that he never heard of muscle cramps and that amount of itching and most likely I am putting on weight because I am getting lazy! I was in tears. Because even without exercise, which I do try to at least gently do twice a week, I have two young kids which in itself is exercise… Up and down the stairs with shopping bags and school bags, house work, pick me ups… And I totally lost my appetite so I barely eat, but I am still putting on weight… The other day my legs just buckled under me like jelly… I don’t know what to do anymore and I am getting depressed with it all…

[NLBatten]

#1170926

Your dr told you that you were lazy?!! Not ok. Find a new dr. And go see an endo if you haven’t. I had all of those symptoms – though not as severe. The muscle weakness / stiffness is why my GP finally sent me to a specialist – first a rheumatologist and she was the one that tested my TSH level. From there I got referred to an endo who told me that muscle weakness was definitely a symptom of HypER. I also seem to have been have a reaction to Lipitor even though I had been on it for years. I went off for a while and it took about a month to get out of my system, but I did start feeling better. If you are taking a statin drug for cholesterol, maybe talk to your dr (preferably one other than the one who called you lazy!) and see if you can take a statin “vacation”. It helps them determine if that is part of your cause of pain. Re the weight gain, that could also be the propanol. Even when used to treat blood pressure only, there appears to be weight gain associated with it. Most beta-blockers do cause this as they can change your metabolism. It is the beta-blocker that is helping with the tremors and pulse. See if there is an alternative OR you may need to consider the alternatives of RAI or surgery if the meds aren’t working (and it sounds like from your symptoms they are not). (FYI, please do not stop taking the Propanol without discussing with your dr and weaning off of it. I was told beta-blockers could not be stopped cold turkey.) You aren’t crazy or lazy. Don’t let anyone convince you that. Unfortunately you have to just keep pushing the drs and find one that will listen to you and do the right test and make some recommendations for solutions when the ATD don’t work.

So sorry you are going through all this. I have received great advice and encouragement from folks on here and felt much more empowered to make a decision once I heard all they had to say. Good luck. Keep us posted.

[Kimberly]

#1170927

@AlexD – If you do a search on this forum for “weight”, you can see that many patients do struggle with weight after treatment. I’ve actually never taken beta blockers, and I still struggle with weight issues. Obviously, our priority is to get our thyroid hormone levels stabilized, but I know from personal experience that the weight issues can be very frustrating. All we can do is try to eat as cleanly and as mindfully as possible, and make time for physical activity (depending on what activities our doctors have given us the OK for — strenuous activity is not recommended while we are still hyper).

On the itching issues, have you visited a dermatologist? There is a skin issue that occasionally occurs in Graves’ patients called pretibial myxedema. It usually shows up as a red rash on the shins that has a texture similar to an orange peel. It might be worth having a dermatologist check this out just to see if this is what you might be dealing with.

Take care!

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