Firstly and as briefly as I can, been on the board for quite a long time, I'm hypo-hashi, I take NDT with T3 top up, I'm gluten free and have been now for around 6 month apart from a couple of times where I've eaten something and then checked the label as an after thought and realized I've consumed gluten by accident (so strictly speaking not gluten free?) it's been a while since I've slipped up with that anyway.
Right I've had this issue for as long as I can remember but it has always come and gone with maybe one area of my skin but the last few months I've been getting instances one after the other of this weird nerve pain and numb skin.
It starts out where I'll notice i've got a part of my skin that will get a sort of shooting pain across it when I move a certain way followed by a burning sensation, kind of like a Chinese burn and then over the course of a week or 2 the pain side goes away and I'm left with a patch of semi numb skin in that area.
Sometimes the feeling comes back but not always, I've got a patch of skin on the front of my thigh that's been numb for months.
As far as any other thyroid issues or symptoms go, I don't have any, I feel really good at the moment, I sleep well, energy levels are great and my last TSH test came back as normal.
Supplement wise I used to take just about everything I'd been advised to on here but since I've been gluten free and on a good stable dose of ndt & t3 i felt like supplements were a waste of money as I never feel any different on them or off them.
I've done a bit of reading and I think this could be a low B12 issue or maybe iron?
I've just booked in to see my GP but thought I'd come and see if anyone else here has had this before?
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DonnyJam
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Hiya - all you can do is retest everything. I've had weird pains caused by multiple things but I did get a similar issue mostly in my heels/lower legs but also a little down my arm when I became hyper after giving up gluten at around the six months marks as needed a lot less thyroid meds after that as apparently had no more resistance! (I'd been on the same dose for 15 years)
Also definitely worth getting your vit levels done again (vit d, folate, ferritin and b12) along with blood count and iron panel if you want to rule out low b12/iron.
Anyway just to check you've retested everything in the past few weeks as not clear as going gluten free could have made a dramatic difference and it began to show around six months
well as I said, I've booked in for a check up with my GP surgery but as you probably know it takes a while to get in these days in most parts of the UK.
My appointment is the 16th.
I'm not going to start trying to introduce any supplements right now though, I'd rather see if I can get some tests done to get a clearer picture first rather than guessing.
What you said about going hyper makes sense though because although I said I didn't have any other thyroid symptoms at the moment, I've been struggling with the temps in this heatwave but I was thinking to myself 'everyone is though aren't they?
so excessive sweating especially while sleeping could be a sign of going hyper and not purely the current heat levels!?
I've had no tests done at all for a long time because I have no faith in the NHS anymore so unless I feel unwell, I just go to the routine TSH tests whenever they request them just to keep them happy and maybe a general marker for if they tell me something is way off..
If you can afford it, just bypass them and pay for your own blood tests like most of us do. They're not expensive and you get everything you need doing rather than just a tsh etc. Let me know if you want further info on this.
However, we are all sweating I imagine lol!!!
Yes definitely wait to get results before supplementing as you don't want to supplement anything unnecessarily and you want to see where you are
I've had private full thyroid panels done in the past with blue horizon, back when I really didn't feel good and knew having TSH results that said I was in range were complete trash lol.
I'm not really in a position to be able to afford private atm, wish I was...
Once my GP actually said to me, "why did you go private, we can do all these?" even though he was telling me the month before I was fine lol so maybe he will be willing to do a full panel for me, I'd really be interested to know how my antibodies have reacted to being gluten free along with all my free's now I'm on NDT and not that drug I'd advise anybody against (levo) if they can afford NDT and maybe T3 also.
I know some people do well/ok on levo but I really do believe if the NHS prescribed NDT to all patients this board would be whole lot quieter....
I've never had a problem with medichecks, they've always come out the same as the NHS ones. The thyroid ultra vit is often on offer for £79 on "thyroid thursday" lol. Problem is you have to get your tsh to one or just under to feel well. In range is not good enough and all depends on your t3 levels.
Yes try and get them from your doc then. They might be able to do the antibodies but they often aren't allowed to get the T3 even if they try. They'll be able to get the full blood count and iron panel as well.
I never did well on levo but the nhs put me on t3 only. However, I'm back on a little T4 now since I went gluten free as I am able to use it more. I keep wondering about trying ndt
I've had Hashimoto's for years and developed numbness in my face and feet over the last few months. Turns out that my B12 is low and I am seeing some improvement with a supplement. It's a wee bit complicate by nerve impingement in my back which is also causing numbness. Highly recommend the suggestions of having B12 checked.
I can't respond to all of your post but the one regarding numb thigh - is it your left? I have been diagnosed with Meralgia Parasthetica which is pain and numbness in your left thigh, quite rare but speak to your GP about it, if it is from a certain point to another it could be the same. I was advised it is where the nerve gets trapped by the hip...keep us posted
I had bloods taken today so will have the results in another couple of days hopefully, tested quite a few things vit d, folate, ferritin, b12, bone profile, fbc, auto diff,
I'll definitely update when I hear back from my results if anything shows up
The GP did agree it sounds like something nerve related so hopefully it'll just be low b12 and not something more serious.
Allyh, no actually it's my right thigh? I have been having pain in my right hip which I thought was just down to doing a lot of running lately.
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