Anyone have the same thing? What next?

Went to GP Sept last year with very painful muscles,brain fog, pins and needles and numbness in hands, fatigue, lack of concentration and few other symptoms and after thyroid bloods was told I've got hyperthyroidism. Diagnosed with graves Feb 14 by endocrinologist, given 10mg carbimazole per day. Having already tried gabapentin for pain I went back to GP for something else only to ne sent straight to a neurologist the day after because he couldn't find any reflexes. They eventually did find them and did a million bloods. They also refered me to pain management team and rheumatology. Few days later my Drs receptionist (not Dr??) rang me to say I was vitamin d deficient. I have 15 tablets at 20,000 (not sure what measurement is) then 56 at 800, they also wanted to do more bloods. I asked phlebotomist who told me they are testing for coeliac. No improvement on 7 days of vitd should there be yet?

Does coeliac sound likely? Am I just collecting autoimmune diseases? Anyone else with anything similar who can give me advice on what other tests I should ask for?

Sorry for all the questions but I'm going out of my mind on Google!


33 Replies

  • Gosh, that's a lot for you to take onboard all at once. I don't know about the reflexes, but your pins and needles and aches and pains could be coeliac; some people have no symptoms so it may just be that you have a thorough doctor who saw some reason to check. You may very well have more than one autoimmune problem; it isn't uncommon and it's sometimes suggested that thyroid patients should be screened for coeliac.

    Did they check your b12? Deficiency can cause pins and needles.

    I wanted to say about the vit d that it is a long slow climb and your levels may take months to improve, though you may see improvements in aches and pains before too long.

    It would be good if you get all your blood results printed out so you can take them home and absorb them and if you have specific questions you can ask here. x

  • Thanks x they did test my b12 and said the range was 190-900 and mine was 203. They said that was ok.

    I'm going to ask for copies of all my bloods thank you and have a look see if it makes sense. At the mo I really do feel like there are more questions than answers from every test and it's driving me up the wall x

  • 203 is very low on that range, I was low in the range and told I was fine too, I have a family history of pernicious anaemia so I got myself some sublingual Methylcobalamin, it brought me right up and I felt much better. You are so lucky they tested all that - I had to put up such an argument to get mine tested and had to pay privately for my Vit D.

  • I thought it sounded low too, I'll look for that thank you.

    I am grateful the Drs are testing everything, they are fairly young so thankfully I think they realise as I'm only 34 myself these symptoms aren't right x

  • Well sometimes they use youth as a reason why there couldn't possibly be anything wrong with you. :-) I'm glad they're doing thorough investigations.

    As Fruitandnutcase says, your b12 is low. There are b12 patches as well as sublingual b12. You can't really overdose on it, but if you're not absorbing it (as with coeliac) you might need injections.

  • Oh I didn't realise the link between coeliac absorbing it that's really interesting thank you x

  • The surface of the inflamed gut becomes smooth and can't absorb nutrients, which is why you may lose weight, lose hair etc. In the end your body is starving and the food just goes through you without any goodness getting through (similar to diabetes in that respect).

  • Really difficult isn't it - if you are young then they think you are too young to have certain things wrong, then when you reach middle age it's menopause so they blame absolutely everything on that.

    In my case I was way outside the age range for Graves ( or what I read was the usual age for Graves to occur so I was just considered a nutter by the first doctor I saw. In fact I came out from my consultation almost crying with frustration and said to my husband that the doctor thought I was nuts!

    Fortunately four months later the person I saw recognised I had a problem right away, I knew all along I wasn't nuts.

  • I tried the patches first but much preferred the sublingual.

  • Interesting. Do you feel they work better for you, do you get better improvement on sublinguals? Just asking because I'm trying everything to improve my b12 too. All info welcome. :-)

  • I don't know whether they work better I didn't take them for long enough - it was a long time ago when I tried them, as soon as I managed to get the sublingual ones I changed over, I just added them to my pill routine - I take all my other vitamins, have a quick spray of Vit D, then pop the B12 under my tongue - I found it easier than trying to remember to change the patch.

  • Here's a nice little video that someone posted on TUK - it explains how various vitamins help your thyroid

  • Google B12 deficiency Treatment Protocol print out give to Dr.

  • I was on 20,000 one day a week for 12 weeks and now on a maintenance dose of 800 IU/day. After the first booster dose I felt much better the next day but then reverted back and each extra booster day I got an additional day of feeling much better. My levels increases from something like 25 up to 87. I now feel the aches are back again so blood test booked Wednesday to see if slipping back again. There seems to be a difference in how different GP's tackle the problem and from the posts around when I was first taking my maintenance dose I got the impression that 800 IU was a low dose so be interesting to see what my reading is now and more importantly what is suggested if it has slipped back!

  • Oh I didn't even get told my levels by the receptionist who rang me, I really should have asked. Brain fog overload x

  • Hi, good that your GP / endo have actually checked out your Vit D and is trying to do something for your pain.

    The first GP I saw told me 'I was needing a holiday' - I was actually really ill, my heart was pounding like it was going to pop out of my chest, my hands shook like mad all the time. I felt so ill.

    By the end of November when I was so ill that I couldn't carry on a different GP recognised that I had an overactive thyroid and it turned out to be Graves. I started on 20 mcg Carbimazole which was doubled to 40 after a month. At times during the early days my whole body felt like it had been hit by a truck. My feet hurt when I stood up and tried to walk, the rest of my body just hurt - even just lying down.

    I was on Carbimazole for too long at the beginning of my treatment before they added levo( my hospital treats with block and replace) and I think going from being incredibly overactive to being very under active was what caused that. Once I got stabilised things got a lot better but that took a while. My hair fell out like mad too, every time I washed it there was a pile of it down the plug hole, my fingernails pretty much disintegrated and it got that my fingers were so painful I could hardly use my hands. It was a dreadful time but like I said once I was stabilised all that went. I sorted my hair out by sending off to Dancing Dolphin ( recommended by someone on here) for their Meadowsweet shampoo and conditioner, that was so successful I then sent off for their foot soak and cream, my legs still ached and as I had started to rub the foot cream up my leg to try and help the leg pains I decided to go for their body wash / shower gel and body lotion which I still use today when I get odd aches and pains. I felt it made a huge difference to my poor painful body.

    Don't know about collecting autoimmune diseases but I think if you have one then you can easily have others, I realise now I have quite a few odd autoimmune things wrong although none had as much effect on my body as Graves.

    When I started on Carbimazole, I was told by my pharmacist that I should take Vit C, I wad already taking Rexadon 1000mcg slow release Vit C, I also take an A-Z multivitamin, CoQ10 ( I now take ubiquinol which is supposed to be even better ) and I eat five Brazil nuts every day for selenium / magnesium and I also I take a vitamin D 3000 spray and a sublingual vitamin B12 tablet every day too.

    If your doctors are thinking of coeliac, and even just generally with Graves it might be worth you going gluten free if you can - or at least cutting down on gluten. That is supposed to make a difference. I'm constantly trying but as I like bread and cakes and I'm very weak, I don't find it that easy.

    Make sure you get masses of rest. I felt so ill at the beginning I just gave in and did very little apart from sleep, fortunately my kids have grown up and left home so it was just my husband and I at home, he cooked and shipped and I pretty much abandoned housework. I cancelled a load of work that I had been booked for and just didn't even try to live my normal, previously lively and energetic life. I dropped out of socialising, I felt so ill I just couldn't be bothered.

    I didn't do anything that I felt I 'should' do, I only did things I actually wanted to do back then. Gradually as I got sorted out my body got better and I got back to how I was before the Graves - thank goodness.

    Good luck, hope you feel a bit better soon, it does get better. It might not feel like it now but it will. My first question on here was ' will I ever feel normal again?' and yes, I do.

  • Thanks x I do keep meaning to get some vitamin c but it keeps falling out of my head. I like Brazil's too so that sounds like a great idea thanks (maybe I'll get the chocolate ones :-D )

    Unfortunately no rest for me, it's currently the Easter hols and my 5,3 and 16 month old are making sure of that. I was told yesterday by my father-in-law that I wanted to be a mum so I pay the price! I'm sure if my arm was falling off I may get help but as autoimmune don't tend to show many physical problems I'm on my own :-(

    It really does help to know it's not just me and it will get better. It's a very lonely disease, Thank you x

  • No, no take it from me - don't go down the chocolate Brazils route - I've put in all the lovely weight I lost when I was ill (21 pounds) and the fact I counted fruit and nut in my five a day didn't help.

    Your father in law deserves a good kicking if you don't mind me saying! What an incredibly stupid and unhelpful thing to say to you, being a mum has nothing to do with having Graves. Grrrr!

    If you google 'graves letter to friends and relatives' there are lots of letters that spell out to those who have no idea how you are feeling - here's one for starters - it sort of sums up how you might be feeling your father in law could do with being told just how horrible it can be - I mean honestly what has wanting to be a mum got to do with having some awful autoimmune disease!

  • Yikes will give the chocolate a miss then as I've actually put a stone on since Xmas!

    I'll get the kids to give him a kick, they can get away with it :-D I think he means they won't give me any childcare help.

    Thank you, I'll look at those and I'll maybe post one on my facebook for everyone to see so they can understand x

  • I was diagnosed with graves a few years ago. I had all the usual symptoms along with uncontrollable finger movements. Cramps in places I didn't know you could get cramp in!! Anyway one morning I thought I was having a stroke. Face and mouth squint. Rushed to hospital and bloods tests etc. Turns out my calcium was almost dangerously low. Seemingly that affects small muscles hence the cramps. After 18 months on carbimazole. Three stone heavier!! I am now in remission and touch wood it stays like that. I will always have to take calcium meds. But good news is I feel better than I have in years. Thought I would let you know that when you are feeling like things couldn't get any worse there is light at the end of the tunnel for some and hopefully you to xx

  • Thank you x I'll ask about calcium too as my vitamin d tablets say they don't contain it x

  • I was the same - cramps in the weirdest of places - like you say places you didn't even know you could get cramp, then next day the muscles I'd had cramp in still hurt like mad. Graves obviously reaches places other diseases can't reach.

  • You need to get Vitamin B12 ,homocysteine levels iron folic acid.My B12 is 312 which is way to low have had ringing in ears,nite tremors,vibrations,nausea ,headache,pins & needles in both hands now have numb feet,hearing & short memory loss due to nerve damage.It took 6 mths to find a dr to listen & diagnose.My lifesaving book "Could it be B12? " A must to read.Good luck

  • Thank you, my feet are also numb and I've been wondering for a while about my hearing but never thought it could be linked. I just thought it was down to having noisy kids all day x

  • Funny its like you just described me and same reasons i went to the doctors. My b12 was 230 and said it was fine so bought b12 myself i.m on 1000mg of (meth , don.t know the full name of it sorry)b12 the one where it stays in your system longer and also take vitamins with b12 in ,they are a boost on the vit d and iron and calcium and folic acud the doctor put me on after being found low in all of them. I am starting to feel better after being on them a month now . Also being tested for coeliac disease aswell so hopefully i.ll find out at the end of the month if i have it or not and go from the .

  • Thanks, I think I'll buy some as I'm sure it cant hurt to take it anyway. Hope you get answers soon, it's so frustrating isn't it x

  • It is and the worse thing is you look ok no one thinks your ill and my doctor shes keeps doing these little tests cause i keep saying about my muscle weekness and its like push against my hand now pull , told her its not like that its like i can.t cut veg up i can start it but my arms just ache like mad or doing my hair i can.t keep my arms up for long and holding my sons legs while changing is nappy. Some times even carrying a cup of coffee or a plate of food lifting saucepans to empty or dish food out. Pins and needles that turn into electric shock pain shes given me tablets that cause drowsieness god i only took one ,dangerous when u have a baby i was like a zombie for 24 hours it worked on the pins and needles but once it wore off i had the pins and needles come back in full force and wasn.t a pleasant experinace. The problem i also find is that doctors don.t treat you as if anything is really wrong with its take this pill for the rest of your life and you.ll feel better and cause of this no one else sees our condition as serious like other illnesses.

  • That's exactly the same as me wow! Trying to put a coffee on the side or sometimes when my toddler pulls my arm a certain way, I even make dinber and my husband dishes up because I can't hold the pans that long. I've told them countless times as well that I can't find a pattern when it happens more. They gave me tramadol for the pain and I took 2 at 8am, by 10 I had no idea where I was and my 83 year old Nanna had to come over to watch my 3 kids. Something I would never dream of asking her to do but I had no idea what was going on. Definitely not having those again! I've been refered to chronic pain team too but I keep wondering why they are just treating the symptoms and not finding tje cause.

    I had my blood test on Wednesday for coeliac so if I get the results soon I'll post on here. I'd be very interested if you have any further ideas or diagnosis as it really does sound so similar.

    Good luck :-D

  • I.d like to know aswell doctors have refered me to a neurologist so waiting to see them . My doc as said they don.t know whats wrong with me i.m 36 my memory is worse than my grandfathers who memory is sharp as hell he don.t forget nothing he.s in is 80s. My 5 year old is stronger than me who can open a bottle of pop when i can.t. read being low in vit d and b12 can cause this also coeliac disease can but if been low in these for a long time it can take a long time to see any improvement but i.m sure i read that muscle weakness can be perminate if been to low for so long. I.m so glad that there is someone like me just knowing its not in my head that someone else experiances the same as me cause i feel as if the doctor don.t believe me or my family cause perhaps i can do something one time but noy another time. Asking my kids for help with stuff they moan cause i.m for ever asking. Do you drop stuff aswell for no reason and also find it hard to pick small things up sometimes. I even think done things and to me done them so sure of it but really i haven.t cause i think its i.m trying to remember that got to do this and what got to do and probably convinced myself done it my memory is so bad the things done is so embarrassing.i.m terrible with spellings, dates, times and peoples names trying to remember them is a nightmare. I use to have a good head on my shoulders now i feel thick as sh**. Been tested for dymentia i haven.t got that thank god lol. Sorry about spellings are you taking any vitamins at all i.m on all of them i think only b12 they didn.t put me on but bought my own i do feel better than before but i think thats my iron i don.t always feel foggy brained but memory still the same .

  • The neurologist refered me to chronic pain team and rheumatologist, I don't think they know where to send me. My memory is bad too, I have to write everything down and I also have the lack of strength. I totally know what you mean, family just don't get it, some days I can barely get out of bed and some days I'm not too bad. I do drop things and also find fiddly tasks like buttons and buckles tricky. I keep thinking I've told my hubby certain things and he says I haven't but I've tried so hard to remember I actually convince myself I've already said it. I'm on iron and vitamin d but I think I'm going to look into b12, calcium and magnesium as advised by people on here. So glad to know it's not just me, maybe between us we can get some answers xx I'll make sure to update with any new into x

  • Info I mean :-D I'm almost 35 so similar in age.

  • Thanks it good to know we not alone ain.t it and until someone else says i.m like that u do think is it all in my head amazon viabotics i buy they have loads of different ones and cheaper than most places.

  • Thank you, I'll get some ordered. Hopefully we can both get some answers soon :-D

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