How to handle joint pain? Hyperthyroid on carbimazole

[ATG007]

Hi I'm new to all this. Diagnosed hyperthyroid 8 weeks ago. Finally saw endo last week. Started on low dose carbimazole 10 mg daily. I'm having loads of joint pain and muscle stiffness. Problem is I'm a yoga teacher and use my body lots. My question is whether I do yoga to keep joints mobile or whether I should be resting them? Any advice on best way to ease joint and muscle pain?

[Fruitandnutcase]

I was diagnosed a year ago with Graves and started on 20 mcg Carbimazole which was then raised to 40 mcg and eventually levothyroxine was introduced.

The Graves affected my muscles very badly. I am heavily into photography and I found if I got down low or even onto my knees I just didn't have the muscle strength to get up again without holding on to someone or something.

I have done Pilates for at least ten years and I found it quite difficult to keep going at times because my muscles felt so weak. My Pilates teacher is a physiotherapist so she knew what my body was going through and how to help me. I kept going and did what I could even though some days it wasn't all that much and my legs were really wobbly and didn't always do what I was telling them to do. I also used to get the most dreadful cramps especially at night and that didn't help when I was doing Pilates as they kept going into spasms.

I also kept going to the gym, I was never a real energetic 'gym bunny' so I never did huge amounts but I liked the crowd of people who went so I drastically reduced what I used to do and carried on there, I found mentally it was good for me to keep doing the things I liked.

I totally indulged myself and rested an awful lot at the beginning and only did things I wanted to do (I'm in the fortunate position of being more or less retired)

Someone on here mentioned meadowsweet shampoo (I was on a large dose of carb for too long, ended up hypo active after being very hyper so my hair started to fall out!)

Anyway I sent for that and discovered they also do lotions for aching muscles, I started off with their foot cream, my feet were agony to walk on, that made such a difference that I bought lotions so that I could rub them onto other aching parts. They made an enormous difference to me. I also took hot water bottles to bed every night, I found that if I could keep my legs warm they tended to feel better, not always but that helped.

This all sounds grim but that was way back when I was at my worst, I have now come off the block and replace treatment I was on but by the time I did that I found I was pretty much back to normal, cycling, walking and generally pretty active so there is light at the end of the tunnel, think you just have to accept that even though you might not look it on the outside - I lost loads of weight and looked great - you are really quite ill, so be kind and patient with yourself.

[ATG007 in reply to Fruitandnutcase]

Thank you so much for this response. Part of the difficulty is feeling isolated as I don't know others in a similar position. Yourvadvicr is really valued - thank you for taking the time to reply.

[Fruitandnutcase]

No problem, glad it was of use to you. I had never heard of Graves until I got it. I think I must have had it for a long time before I got so bad it couldn't be missed. Discivering this site was such a help too. There is always someone who has experienced what you are going through and there is so much information to be had.

Should have said my pharmacist said to take Vitamin C with the Carbimazole, I was taking it anyway, I take 1000mcg slow release capsules that also have zinc in them, I take CoQ10, I take vitamin B12 the methyl one as well as a quick spray of Vitamin D and I also take a daily A-Z multivitamin / mineral, a couple of Brazil nuts every day and I try to cut out gluten. The only blot on my diet horizon is that my body has this yearning to be on the Cadbury Fruit and Nut diet.

I had unbelievable palpitations before I was diagnosed, I felt like if was going to have a heart attack. It was like my heart was in my abdomen in fact it was easier to feel my pulse by putting my hand on my abdomen, it was waking me every single night and had done for a long time, had night sweats too so I was exhausted, I was so forgetful that I had at one point told my GP I thought I might have Alzheimer's (I didn't and am fine now) I was SO grouchy and intolerant it wasn't true. I felt as if I hated everybody and everything and felt like I was going off my head.

It affects so many different parts of your body too, I mean sore feet? Your upper leg muscles? My finger nails peeled then I got painful fingers too, just so many things ached or hurt, felt as if I was falling apart and I was SO tired, I have a friend in her eighties and honestly I could barely keep up with her, I used to go to things because I felt as if people thought I was some kind of wimp who was always 'tired'

It was all so weird though because once I started treatment I went back to normal ( or as normal as I ever was or am ever likely to be)

Keep going though, you will get there eventually. Exactly a year ago I was practically on my knees, now I feel good. I still like my early nights though.

Are you likely to be given thyroxine with your Carbimazole eventually or are you only on Carbimazole?

Liz

[ATG007]

Wow - thanks for all that info. At the moment I don't know what the plans are. I didn't get any useful information at my hospital appointment. It was really just take these pills and come back in a couple of months. On the positive side I guess the lack of interest might show I'm not particularly bad or unusual - but I really felt that my GP could have prescribed that a couple of months ago himself and I didn't learn any more at the hospital. I don't know if they think its Graves or why they think I've been producing too much thyroxine. I'm going to see my GP later this week and hope that I can understand a bit more. I'd really like to support my health through diet and supplementation etc but I think knowing if it's Graves would be helpful. Still. At least it's been diagnosed and treatment has started and I'm not just a sweaty, breathless wreck not knowing why! Many thanks.

[Fruitandnutcase in reply to ATG007]

You aren't in Scotland are you? Someone up there said her doctor wasn't allowed to start prescribing even though she was hyper. I love your description 'sweaty, breathless wreck ' just about sums your average hyper sufferer up.

I went to the doctor one Wednesday morning after I had nearly killed the energetic 80+ year old and myself when I was crossing a dual carriageway in the dark while taking us to line dancing. I was still trying to keep going even though I felt awful. How can you tell someone 20 years older than you that you are too tired (again) to go out at night?

Went to see my doc the next day, had bloods taken on the Thursday and on the Friday I came in to find a phone message saying I had a very hyperactive thyroid with antibodies, my doctor had left a prescription for 20 mcg carb at reception, contacted a consultant and would I make an appointment for more blood tests in three weeks time. As it was there was a problem with the paperwork so I gave one after three weeks and another the following week. Once they looked things over I got a letter from my consultant doubling the carb and forms for more blood tests before the big consultant visit in feb which was how I then became hypo.

I had read loads of information on here by the time I got to the hospital and when I finally got to see the consultant's registrar at the end of February he mentioned antibodies and I said ' what you mean like with Graves?' And he looked surprised, pointed at me and said ' yes! graves! that's what you've got, Graves' I had a distinct feeling that if I hadn't mentioned the G word he might not have either.

Make sure you get a copy of any / all blood tests you have had done along with the lab ranges, you are entitled to them and ought to be able to get them from the receptionist. You can often be 'within the range' and still feel absolutely rubbish.

If you read all the posts you will see that there are a load of other things that really ought to be tested but from what I have read (and experienced) doctors seem not to want to do them. Same with FT3 - I have never had that done even though it was requested by the consultants twice.

There is ferritin, folates, B12 and Vitamin D I'm sure if I have missed any off someone will point it out. I have only just recently got the hospital to do those for me! Well not Vitamin D - my consultant said it was all hype about vitamin D! But he did the rest along with a FBC and I was told they were all fine. Haven't seen them for myself yet though so fine can mean anything, I could be just into the bottom of range or I could be healthily within the range, I feel ok just now but I must go collect them soon.

[ATG007]

Wow. Thanks for all of this. Not Scotland - Cheshire! Absolutely exhausted so off for bath & bed x

[Hidden]

Totally agree with the others about getting the vits and minerals checked. We're often low in these to start off with even before we go hyper, but when we have gone hyper this is compounded by an increased demand for them because everything in your body is speeded up and working much harder.

If you have aches and pains vitamin D and calcium tests are a must. There is lots of research linking Graves to vit D deficiency. Here is a selection:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/114...

It is very important to have calcium checked as well as vitamin D, to discount any parathyroid issues.

B12 and folate deficiencies are also prevalent in Graves, because Graves sufferers may have autoimmune atrophic gastritis causing malabsorption, or classic Pernicious Anaemia. Some articles here:

ncbi.nlm.nih.gov/pubmed/169...

ncbi.nlm.nih.gov/pubmed/145...

ncbi.nlm.nih.gov/pubmed/877...

Low iron and/or ferritin levels are also often present, even if you don't actually have classic anaemia in your blood test results.

So ask for these things to be tested (make sure they don't just do an FBC), and get a copy of all the results, as you will discover that lab ranges are only useful for picking up deficiencies in those that are practically at deaths door. It's no good just being "in range", we need to have optimum levels of all these things.

As LizH says, think about gluten as well (ask for a Coeliac test BEFORE you think about cutting it out). Even if you test negative, you may find a gluten free diet helps matters anyway.

H x

[coetzeegisela]

Greetings all - know of hypo- and hyperthyroid, but not familiar with 'parathyroid'. Medically, how does it explain? All info on this site is so welcome, and useful! G Coetzee

[ATG007]

Thank you Hamster1 more fabulous info there.