i was recently diagnosed with hypothyroidism about a week and a half ago (came to the go for frequent fainting). before that i was getting numbness in my fingers then it spread to my arms and then my entire body. it kind of comes on and off. it has been my eye for a few days, radiating from there towards my jaw.
my gp said to come back if it kept happening and that she would order some blood tests but i have to wait a few more weeks for this appointment. i was just curious to hear if this is related to hypothyroidism? i was tested for diabetes as well and came back negative.
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
I am hypo and seem to be numb. Especially right foot but all over body. I saw a nuerologist who stuck pins in me and I couldnt really feel anything. I have not got results of that tests. Low B12 is common whith thyrod conditions.Post your latests blood results for forum comments.
I started with this almost a year ago. Tingling extremities, fingers and hands going numb, pins and needles. All on a daily (and nightly) basis. Eventually my GP sent me to a neurologist. My MRI scan was clear and she put it down to 'a functional nerve disorder'. I'm not convinced, as I have Hashimotos and a history of B12 deficiency. I'm about to start self injecting after some great advice from the Pernicious Anemia forum.
I also self treat with NDT for my Hashis as my doctor hasn't a clue but won't admit it, instead trying to push me down the anxiety route. This isn't uncommon with thyroid problems.
So, check your B12. If you struggle absorbing it try methylated B12 in spray form or 'melts' as a first port of call. And if your doctor isn't helpful, don't despair as there are private blood testing options available and a ton of help here too. Good luck!
Little island, did you see any improvement in your numbness after starting b12?
I have Hashimotos and have been struggling for the last 2 months. One of my major concerns is left arm heaviness /numbness and though my b12 are within the range it’s in the lower range. GPs are obviously not willing to look into it and I am trying to find out the reason for my symptoms.
GPs are rarely concerned about B12. They don't realise its importance. If your B12 is low in range, you will have to supplement yourself. What, exactly, was your result? If you can tell me that, I can tell you what to take.
Ask GP for full testing for pernicious anaemia before considering starting on a daily good quality vitamin B complex, one with folate in not folic acid may be beneficial.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
As above: GPs aren't interested really. They don't know much about it either, so it's easier to dismiss your concerns rather than educate themselves. Anything rather than admit they're out of their depth.
The neurologist seemed to be unaware of any link to my symptoms either, which is quite concerning considering B12 and other deficiencies can cause neurological problems and it isn't exactly rare.
Try methylated B12 as a first port of call. There's an oral spray, or under the tongue lozenges. If you're still struggling and getting nowhere with your doctor, the Pernicious Anaemia HU group are very knowledgeable. I tested negative for PA but the tests are notoriously unreliable, and supplementing with B12 can further skew the results.
Either way, I have a real absorption issue (alongside the usual Hashis problems with low iron, vitamin D and folate)... my GP isn't interested in my pitiful iron levels either. Which is why you're doing the right thing coming here - you'll get a lot of help if your doctor is useless/ignorant/condescending/all of the above.
I'm getting my supplies and plan to start injecting mid March, when I return from a trip to America.
Also, it's worth bearing in mind that B12 readings can be high on tests but the B12 may not be reaching your system on a cellular level.
Numbness and heaviness in one arm were my first symptoms of pernicious anaemia. I was told these problems were psychosomatic, psychogenic, a product of hysteria etc. etc. My PA wasn't diagnosed for another 15 years, by which time I had a great deal of permanent nerve damage. It was not correctly treated for another 20 years.
I'm relieved to hear you are going to self-treat with B12 shots, because malabsorption is common when other autoimmune disease, e.g. thyroid, is present.
Hi, sorry for the late reply. I've been in the US and then had a poorly child to contend with!
My neurological symptoms didn't improve after supplementing with B12. I've been taking sublingual B12 for a few years now. I had a nerve conduction test on Friday and they said it couldn't be down to B12 as I don't have nerve damage.
Not yet, I don't! Stupid thing for them to say but not unexpected. I'm going to order B12 ampoules, needles etc. this week and try self injecting. If things improve, I have my answer...
Hope things have got better for you over the past month
thank you! i’m just worried if they don’t find anything i think they’ll pin it on my anxiety. but my anxiety hadn’t gotten worse when it started and i don’t think anxiety causes 24/7 numbness! so i don’t know thank you though!
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Read up about small fibre polyneuropathy - it causes pain and numbness for some with autoimmune diseases and is not ‘functional”!
The only way to confirm it is by having punch biopsies taken from the numb areas but it is a biomedical condition - either classes as idiopathic or else the manifestation of a condition such as an autoimmune disease. Here are a couple of links to good information from good neurologists (Dr Louise Oaklander is the best!), whom in my experience, are sadly few and far between - especially in the UK:
Ive had numb patches, sight problems and sleep problems. Endo is checking for pitruitary problems. You should get a proper referral to an Endo with those symptoms x
thank you everyone for your replies! it honestly helps a lot even knowing i’m not alone. it’s a lot to take in. i will look into everything that has been suggested, thank you ever so much. what a wonderful community!
as an aside i don’t have a copy of my blood test results i was planning on asking for them at my next gp visit. is it ok just to ask for it at reception?
My old surgery were great and would just hand me a copy at reception. The new one refuses to give copies of results and you have to sit with a GP instead while they explain them. In case you 'misinterpret' them.
In other words, they glance at the screen, say everything is within the normal range, and dismiss you without a paper copy. Not sure whether that's allowed, but it's why I now get my own tests done and come here for advice 👍
Assuming you are in the UK, this is absolutely not allowed. Under GDPR you can insist you are given a copy of your results, and you do not have to sit with a GP to be told how to interpet them. Never stand for this kind of behaviour.
I'm in Scotland. I didn't know that, although I've tried to look up whether their approach is allowed. There's one particular receptionist who enjoys wielding power... Do you know where I can find any guidelines re. issuing results?
Thanks so much for your reply by the way. It's very helpful.
You could do a search of the forum (box at top), but I believe the CAB website has a lot of information.
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I’m in Scotland too and it seems to vary from practice to practice. I moved around for a few years and my last practice refused to give me copies so I had to ask a GP. She was not happy about this and said it isn’t practice policy to print copy letters or blood results.
Then I was being monthly blood monitored for a few years between 2 practices while away with my husband for work so I always got copies no problem.
Now I tell reception that I live between 2 health boards and often have consultations in both and the consultants can’t always access my blood results so like to have mine to hand to show them. It’s an exaggeration but I usually get them somehow.
But I do have an awful lot of blood results now to file and one new GP recently said he couldn’t possibly read 750 clinical letters on my notes in order to help me with my symptoms!
What helped me was seeing a Functional medicine dr.
I'm now on vitamin d, omega 3, magnesium, and cbd oil for inflammation.
I feel great now. Find a holistic dr. They will help!
To repeat - it’s not always just about B12. Please read up about small fibre polyneuropathy (SFN) which causes terrible burning pain and/ or numbness for some with autoimmune diseases and is NOT ‘functional”!
The only way to confirm it is by having punch biopsies taken from the numb areas. But it is a biomedical condition - either classed as idiopathic or else the manifestation of a condition such as Diabetes or an autoimmune disease such as Sjögren’s, Lupus or Vasculitis.
Here are a couple of links to good information from good neurologists (Dr Louise Oaklander is the best!), whom in my experience, are sadly few and far between - especially in the UK:
this is interesting, however my numbness isn’t really accompanied by pain usually, the most i feel is tingling. i had eye pain once when it was coming from my eye but that was new. i will keep it in mind however! (i doubt my gp would look at this)
i went in for numbness before and they didn’t seem too concerned, they were more worried about diabetes but they had checked that. they did say if it continues to go back and they’ll investigate further, which i am going back not this week but the next.
my legs were so numb today i struggled a bit to walk home from work which did scare me.
Dr Louise Oaklander - the expert neurologist who coined the term Small Fibre Neuropathy (SFN) for this potentially devastating condition. I’m sure you will find it well worth watching and learning from her - she’s brilliant!!
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thank you though!
Pin prick sensations intermittently, all over my body ! 
All my healthy family members have FT3 levels of 6 or over..... interesting.
Anti-body test after 27 years?
Hand and foot numbness
