Help please. I was diagnosed with graves in Feb and have been taking 10mg carbimazole for approx 2 weeks.

[samspam]

I know it takes a while for symptoms to improve but if anything I'm finding them worse. Muscle pains are so bad in my arms I have to sit with a cushion under them, it takes at least 20 mins to get out of bed in a morning, my fingers are numb, I'm absolutely exhausted all the time and I'm struggling to be a good Mum to my lititle ones. Does this sound like hyperthyroidism symptoms or should I be concerned it's something else? I also can't stop eating and have gained about a stone since before Christmas. I was on gabapentin for the pain but wasn't finding any benefit from them so the Dr weaned me off them. I take codine and diclofenac but these don't seem to be helping and If one more person tells me it can't be that bad because I don't look ill I'll swing for them! Thanks.

[Hidden]

Hi spamsam I was on carbimaxole for about 3 weeks beforr I noticed any improvement the dose was 20mg daily, I also have Graves.Then the endo changef me to block and replace 40mg carb and 100 mg thyroxime and I felt rubbish for couple of weeks now okish again.Have yoj had your bloods tested recently to check if carb is working gor you? Have you seen endo yet? I do have muscle aches which have improved a bit with the meds.I dont feel as tired .Maybe its not a high enough dose or too high and semt you underactive.You need blood test I had mine done 2 weeks after starting carb.I dont and never had finger numbness, My symptoms were dreadful sweating, palpitations anxiety and insomnia plus Graves eye disease problems.Did yoi have or still got these symptoms.As for people telling you that you dont look ill I get that all the time but they dont know how you feel.I now use my daughters comeback well its not my face that hurts!

[samspam in reply to Hidden]

Hi thanks for replying. I was diagnosed at the Drs around Xmas but didn't visit the endo until Feb. I originally went to the gp with the muscle pains etc that's when my bloods showed up the hyperthyroidism. I'm back at the endo in April with repeat bloods week before.

I do get palpitations, and am quiet an anxious person anyway, no insomnia or eye problems though (or weight loss ) to be honest when I first got my results from gp the receptionist just told me my thyroid results were out and I needed to speak to my Dr I 'Google diagnosed' underactive because that's what most of my symptoms point to. Do you find your muscle pains debilitating? As an example it's really painful to put my coat on, or my arm around one of the kids if they sit next to me. As all this is new to me it's hard to decide if it's a case of wait and see or contact the Dr in case this is something else. Thanks

[Fruitandnutcase in reply to samspam]

Hi, I've got Graves too. My timing was a bit like yours, diagnosed at start of November, I started 20 mcg Carnimazole right away then upped it to 40mcg after a month, by the time I saw an saw endo at end of February I was quite hypo.

In the beginning my body felt like I had been hit by a bus, every part of me ached, even the soles of my feet hurt, think it was possibly fibromyalgia, anyway eventually I got up to 75/100mcg levo along with the carb and my body felt a lot better, the pain pretty much went away and I was much more energetic. The muscle pain was unbelievable though at the time. My fingers were never numb though I did get pins and needle sort of symptoms. You are really quite (very?) ill when you have Graves and I don't think people really realise that, in my case I lost so much weight I looked better than I had one for ages - that was on the outside - inside I felt awful.

I know if you have little ones it is difficult to rest but try to rest as much as you can, in the beginning I was in bed by eight o clock every night for months and I did as little as I could. Poor husband did all the shopping and cooking. Hope you feel better soon, believe it or not you will feel better eventually. My first ever post was something like 'will I ever feel normal again?' And the answer is 'yes, you will' You might not feel you will but you will.

PS - I sent off here for their muscle lotion and I swear by it now. I started with their shampoo and conditioner because my hair fell out when I was let to go under active, then I got their foot soak and cream because my feet hurt so much, then ended up with the muscle stuff too. TUK members get a discount and I think if you email her she might send you a sample to see how it works for you.

thedancingdolphin.co.uk/Mea...

[Hidden in reply to Fruitandnutcase]

Hi fruit andnutcase, thamks for the tip about the lotions.Have had a look which one fo you find helps the most for aching muscles? Thanks

[Fruitandnutcase in reply to Hidden]

I use the Miracle Lotion shown on that link. It has an unusual smell but I find it very good. Like I said I started with their Foot Soak and foot cream and found I was spreading the foot cream up my legs so I decided to send off for the lotion.

I have their body oil too but prefer the lotion, same with the gel. I got a sample of the gel but still wouldn't swap it for the lotion. Think you put TUK10 on the order and you get a bit of discount - works out as free postage.

[Hidden in reply to Fruitandnutcase]

Thankyoi will give ot a try

[samspam in reply to Fruitandnutcase]

Thanks I was just thinking exactly the same! Will I ever get back to myself! I think you read my mind. It's nice to know it's not only me (sorry that sounds a bit mean) I just mean it's helpful that others have been through it and come out the other end. Thank you. I've got my husband doing everything too, not sure how long I'll get that for though

I'll try the muscle lotion thank you.

[Hidden in reply to samspam]

Hi yes I have muscle pain for some time and was told it was fibromyalgia but dont know if it was.Legs ache , ost especially back of thighs and ig I walk up flight of stairs they sort of do an imtense ache when I get to top rather than whilst climbimg them ig that makes sense, My arms arnt as bad but ache more thsn a normal persons.Some days it is difficult to do much but othet days not as bad.It has improved with carbimazole but taken time but not gone all together.There is something called Graves myopothy which causes intense aching and weak muscles so this def needs bringing up with your endo.You can ask your GP about it but mine had never even heard of it! I would ask your GP to do a blood test before end of April. My GP was reading from a book about carb and it said you needef thyroid levels testing after 2 weeks of starting treatment, Of course it could be that muscle pain is from something else so I would make a GP appt to discuss this but odds are its Graves myopothy. Try googling it.

[samspam in reply to Hidden]

I was just starting to look into fibromyalgia, I'll try googling graves myopathy thank you. I also think I'll book an appointment next week for a chat. Thanks for your help.

[HarryE in reply to samspam]

I have found Epsom salt baths good for muscle /joint pain. Not a miracle cure but helpful. And you absorb magnesium from them through your skin too. Hope you feel better soon x

[Fruitandnutcase in reply to HarryE]

I use them too - with a few drops lavender oil thrown in too.

[samspam in reply to HarryE]

Thank you for the advice I'll give them a try x

[HarryE in reply to samspam]

Oh yes, add some aromatherapy oil too if you have some. You need about a cupful of salts, they are cheaper in bulk. Boots sell small pots, for constipation!, but I ordered a huge bag from Amazon.

[samspam in reply to HarryE]

Thanks so much x

[Hidden in reply to HarryE]

Hi harryE thanks for tip about epsom salts being available in bulk on amazon.I have been payong £1.72 a pot fro localchemist amd I soak in a pot a night! Helps with restless leg syndrome been costing me a fortune!

[HarryE in reply to Hidden]

I know, it's a right rip-off! I got 10kg for less than 20 quid with free next day delivery!

[Hidden in reply to HarryE]

Have ordered it from amazon thank you for saving me a small fortune!

[HarryE in reply to Hidden]

Yay!

[Hidden]

Hi I have just looked at it and it says around 50percent of Graves patients have myopathy so its very probable. Take care and let us know how you go on with endo.The good news if it is myopathy it is reversabke with treatment

[Fruitandnutcase in reply to Hidden]

That was one of the first things I had before even being diagnosed.

I take photographs and as you can see from my photo, fungi are one of my favourite subjects. Eventually my thigh muscles had got so weak that I was hardly able to get up off the ground after I had got myself down to ground level to take photos.

For a long time I just thought I had packed far too much gear in my backpack. Now I realise it was the Graves all along.

And yes, believe it or not it does go away, I'm back to being able to getting up and down with no bother at all, hard to believe at the time but it really does.

[samspam in reply to Fruitandnutcase]

That's exactly it, I thought I'd been holding my daughter at a funny angle causing the arm pain at first.

Did it start to get better with the medication or did you need any further testing/treatment.

[Fruitandnutcase in reply to samspam]

No, it just sort of went away. Different parts of me seemed to ache and the aches kind of worked their way round my body then disappeared. It was as if I just got one part of my body feeling better when another part jumped in and took its place.

I remember my weak thighs because that was so strange, I had always been quite agile and I remember the feet particularly though because I found it hard to believe that putting your feet down and walking in them could be so painful, I used to get out if bed and literally hobble to the loo every morning - that was how I came to soak them and use the foot cream.

I used to take paracetamol too at times but there was a limit to how many pills I could have taken so I gave up and went for things you could rub in or soak in.

[samspam in reply to Fruitandnutcase]

Thanks I hope mine go the same way.

I know what you mean about the pills, I already take too many as it is so anything else has to be worth a try.

[Hidden in reply to Fruitandnutcase]

Maybe doctors ought to start resting patients thyroid levels if they have chronic muscle aches instead of assuming itd fibromyalgia.When my muscles wete bad and they not perfect yet but better k would never have dreamt that thyroif coild be in any way connectef.Its good to talk to othef people with Graves as most members seem to be underactive_also a dreadful condition.

[Fruitandnutcase in reply to Hidden]

No the fybomyalgia was my own diagnosis. (I know!!!) I knew the thigh problem was because of the Graves because I had read about that and I could see my thighs had become skinny little weak things it was obvious the muscles had gone.

I think the worst of the body aches and pains started when I was allowed to go under active which was why I thought they were fibromyalgia, I also had particular spots on my body that hurt to touch.

I just find it fascinating how you can feel so ill and sore and then get better. When you are feeling ill you feel SO ill you don't think you will ever feel normal or good again yet you do.

[samspam in reply to Hidden]

I'd convinced myself I had ms or me when I first went and the Dr did lots of different blood tests that's when the thyroid showed up. I hadn't even given it a thought to be honest as its not a symptom I'd ever heard of.

I'm quite lucky the Dr knew what she was looking at.

[Fruitandnutcase in reply to samspam]

Same here, I had felt ill for so long and was sure I had some sort of autoimmune condition, I knew it wasn't lupus or Sjorgens yet sometphow or another I never thought of thyroid. I was told many years ago that I didn't have the under active thyroid I was being checked for and that I was actually borderline over active. Still didn't think of that. My wonderful GP knew exactly what she was looking at too, I saw her one afternoon, had blood tests next morning and by the third day I was started on Carbimazole. Yet I had presented with exactly the same symptoms two months before that and been told by someone else that I was needing a holiday! I remember saying to my husband who was waiting fir me that the doctor looked at me like I was a total head case.

[Hidden]

It's listed on Wikipedia as thyrotoxic myopathy

[samspam in reply to Hidden]

Just had a quick look, certainly sounds right. Thank you. I'm going to discuss this further with my endo as its very debilitating and really affecting me. Thanks.

[tilly83]

Hi Sam,

I was diagnosed last Feb, TSH flatlined and T4 nearly 70. Put on 40mg carb, aim was for block and replace. I got terrible pins and needles in hands, was told it was carpal tunnel but now realise I was going hypo..... decided to do up and down titration of carb according to monthly blood tests. Am now on 5mg every other day. Put on 7kg but now exercising and feeling well. Gave up gluten, ditched caffeine for nine months and really looked at diet, check out Low FodMap and Paleo. If you can afford it treat yourself to nutritionist, acupuncture and massage. xxx

[samspam in reply to tilly83]

Thanks, massage sounds amazing right now but unfortunately with 3 little ones it's out of the question. My diets gotten much worse since I've been ill and I think that's not helping. Before I was mainly eating clean and think I need to get back to that. Thanks for the advice x

[tilly83 in reply to samspam]

I had three little ones once, it's so busy, there is no time for yourself....xxxx

[Busdy123]

Hi there

I have graves also and felt way worse when starting carbimazole. No tingling fingers but my whole body would ache so badly.

I had my vitamin d tested via bloods and it was low. I'm now on 50000 per day of vitamin d and it has really helped with muscle aches. I'm still achey but no where near as painful as it was.

Good luck with everything will be thinking of you.

[samspam in reply to Busdy123]

Thanks, I think thats a good idea. I'll ask the endo at the next appointment if they can test for vitamin deficiency. Hopefully will get some answers. Thank you.

[samspam]

Just a quick update for anyone reading this. I went to the Drs yesterday who recommended upping my codine and making sure I don't miss my diclofenac as well as trying a new tablet. She wanted to give me amatryptaline but said it wasn't good for hyperthyroidism so instead gave me cymbalta. I'd never heard of this before but took it anyway last night. I've spent the entire day feeling like I'm going to vomit, not eating anything and drinking very little. Not taking it tonight just in case! I also have to go back in 2 weeks for further tests. Maybe one day I'll be back to me xx thanks for all your replies.

[samspam]

To anyone interested in an update I went back to Drs last week and was given duloxetine for pain which I was allergic too and have been back today. I've seen a different dr who took my history and is actually 99% sure my pain isn't related to my hyperthyroidism. I have no reflexes at all apparently and he's concerned that altogether this is something needing urgent investigation.I've actually got a neurological appointment tomorrow at 9am. Thanks to everyone who replied to original post x