I'm new here but would like to know if anyone else has experienced severely tingling hands and fingers especially at night in bed. My Endocrinologist doesn't think it's to do with my overactive thyroid or adrenal insufficiency. It's driving me mad!
Tingling Hands and fingers: I'm new here but... - Thyroid UK
Have you tested B12? If not I would do so.
Thank you. My GP said my B12 was normal in June so was reluctant to give me a retest.
What is "normal", do you have the result, reference range and unit of measurement (pg/ml or ng/L or pmol/L)? If not ask the receptionist for a print out of the result, here in the UK we are legally entitled to our results. Don't ask a GP (they don't like it), ask the receptionist.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
pg/ml is the same as ng/L and 550pg/ml (ng/L) = 407pmol/L and 1,000pg/ml - 738pmol/L.
Symptoms are supposed to take precedent over the result, do you have any signs/symptoms of B12 deficiency, check here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
Thank you so very much for such a comprehensive reply. At the end of June my Serum vitamin B12 was 541 ng/L and Serum folate 29.1 ug/L. I do not take B12 supplements. I really appreciate you taking the time to answer me. I am hoping to have bloods done next Thursday. Thanks again.
Few doctors seem to be well-informed about common autoimmune conditions.
You must request a blood test to exclude that you do not have Pernicious Anaemia.
I have this condition and so did my mother.
Unfortunately, her GP stopped her monthly B12 injections (and her two daughters thought that was 'good'.)
Unfortunately my mother developed stomach cancer by having her injections stopped as GP told her that her bloods were fine and needed no more injections. Both my sister and I thought that was 'good'. Little did we know what was on the horizon and I wouldn't wish it on any family. My mother developed stomach cancer due to not having regular injections. I also have P.A. but now get a monthly injection instead of 3 monthly.
I did ask the GP if it could PA as my maternal grandmother had on her death certificate as "cause of death". GP said, "No, I don't think so"! Having full bloods done next week. Thanks for taking the time to reply
I think our own instincts tell us that our body isn't functioning as it should.
Few medical professionals seem to know enough about how the thyroid gland works and the hormones it provides.
My mother also had P.A. but later in life her GP told her 'your bloods are fine and you don't need any more B12 injections'. My sister and I said 'that's good' Mum. Little did we know of the hell that was ahead and I wouldn't wish it on anyone.
Due to my mother's GPs advice she developed stomach cancer due to not having B12 injections.
I do agree that we should listen to our own bodies. The days are gone where you believed everything a GP told you. However, in their defence, they had used to know their patients and patients were able see the same GP each time. Sadly this is no longer the case.
I think they now rely too much on the internet and I should imagine many have now lost the skills they used to develop when first becoming an endocrinologist and diagnosing a patient, without the need for blood tests.
B12 deficiency and PA does run in families and therefore you are at risk if other family members have one or other.
Essential to regularly retest vitamin D, folate, ferritin and B12 with Graves’ disease (hyperthyroid) or Hashimoto’s (hypothyroid)
Low vitamin levels are extremely common with both
Low B12 is also extremely common as we get older
When were vitamin levels last tested
What vitamin supplements are you currently taking
As this is a new diagnosis (for 2 years I was told I had PMR), my GP was reluctant to test b12 as he said it was okay in June. However, my Endocrinologist has requested a full set of blood tests which I am hoping to get done next week. Thank you for your reply. At the moment, I am taking 1000 mg Calci-D. Also 5 mg Carbimazole and 25 mg Hydrocortisone.
How long have you been treated for hyperthyroidism? Has it been a long term thing or a fairly new health development?
Hi yes I also suffer from tingling hands, fingers and toes although I have Hashimotos which is an autoimmune condition which causes under active thyroid. The doctors dismiss it whenever I mention it to them! 🤷♀️
I’ve had it for years now, I was diagnosed with spastic paraplegia following a full DNA analysis and three years of investigations. I also have rheumatoid arthritis and Hashimoto’s. My B12 is always at the low end of the scale despite supplementing for several months now, but getting a GP to do anything at all about anything is a real mission these days.
Yes, you're right. All the GPS seem to do is pass me to another specialist or send for scans or xrays and then never get to speak to that doctor again! Thanks for your reply.
Hello several years ago I had the same thing in my hands wrists,it turned out that it was carpal tunnel, I’ve had operations on both hands now , and they have been fine since , so whether it could be do to that , I do have under active thyroid as well I hope that that is of some use to you hope you soon get sorted kowbie
I have this and its not relayed to particularly low B12 (I am low end and have started supplementing). I ended up with trigger finger, where my finger got stuck and wouldn't straighten. That finger doesn't grip very well now. I wonder if it reflects how well medicated I was (e.g nearer to zero than one).
I haven't been tested for Rheumathoid Athriitis but that was my other thought.
You need to stop vitamin supplements before your blood tests. Also make sure you don't take your levo before your blood test and have the blood test first thing in morning.
Thanks for taking the time to reply. RA was my first thought as my maternal grandmother had that and her death certificate stated "pernicious anaemia ". I am having further bloods taken next week and will definitely take your advice to stop supplements and levo beforehand.
I’ve had tingling feet and toes for many years….I’m hypothyroid.
Yes...I get this badly when I am going through a flare up. I have Graves, which I treat with Carbimazole. I kept a diary through my last relapse and numb tingling hands at night was one of the worst symptoms. I'm back at a normal level at the moment and all the symptoms have gone. I did find a paper on carpal tunnel and Graves, so it can't be that obscure. I was sleeping with a splint on my right hand as I was getting locking of my last 2 fingers. I have no symptoms now I am back controlled,
my vit d is supplemented and B12 low but in range (it's a work in progress)
I get that when my ferritin is low x
I have pins and needles right now and I have hypothyroidism. I get it in my hands and feet and it’s often worse when I’m in bed - evening and morning. I’m convinced it is thyroid related - if I don’t take my levothyroxine (or I think my dosage is too low as I do now) it returns. It also seems to be triggered if I’m very stressed or if I don’t get enough sleep. Very occasionally it goes to my lips and nose.
I’ve had brain and spinal mris to check it out and B12 within reference range - thankfully nothing scary was discovered. This was all before I was diagnosed with a thyroid issue. The neuro consultant put it down to stress. Luckily I got some private blood tests done and uncovered the thyroid issue!
The responses to your post are making me question my vitamins though. My mum had pernicious anaemia and she was very very unwell with it. I have blood tests organised for Tuesday morning so will look out for the b12 result and the numbers stated by seaside susie as I now know from this forum that ‘within reference range’ doesn’t count for much!
I’m sorry you are experiencing this and hope your blood test results provide some answers. Thanks for posting this question as it helps others too
I have had this condition for years. Have spoken to four different doctors at surgery and nothing! Recently seen another Dr who agreed I needed nerve conduction tests. He sent me for a lot of blood tests and now nothing….! Have just chased Surgery for a follow up.
I too have been told I need to see a nerve specialist! Not sure how many years this appointment will take!! Was sent to see an Endo on 2 urgent referrals. Still waiting 6 months on. Went privately in the end. Thanks for taking the time to reply.
How was your over-active thyroid diagnosed ? Do you have copies of your test results ?
It was diagnosed by GP following scan and blood tests.
Do you have the results with ranges ? We see many posts here of members who have been diagnosed as Hyper when it can be a phase of Hashimotos when you can have symptoms of both Hyper and Hypo.
Important to always obtain copies of blood test results from reception - results that are legally yours.
Which anti-bodies were tested ?
Yes, I frequently wake up with numb/tingling hands in the morning. I have Hashimoto's; my b12 is good (>150 in a range of 37.5-188), so I don't think that's the issue. I've had a history of tendonitis, though, and if I wear wrist braces at night I don't get the tingling, so it could well be related to that.
I was reading about insulin resistance lately and saw that tingling in hands and extremities can be a symptom of high blood sugar levels, so that may be something you want to check.
I suffer the same mines numbness mostly, inmy hands not my feet, i was s sure it was something to do with my thyroid trouble, but im in a mess one way or other so god knows x im 70
Hi. Are you on any other medication? It’s just that I know migraines are a common symptom of hypothyroidism, and I was prescribed Topiramate for them, which have tingling fingers and toes as a side effect. (Now I am on the correct dose of thyroid medication, I no longer need it as the migraines have stopped 👏)
Hi yes I am experiencing it especially at night I'm underactive and have read it can be a symptom x
I suffer with this daily and am in agony with burning, numbness and tingling in the arms up to my shoulders. Occasionally I will get cramp in one leg or the other. Years ago they said it was carpal tunnel syndrome but my thyroid issues have been a factor I am sure as even splits at night don't help. It causes severe loss of sleep as it's impossible to sleep through. Not sure what the solution is my only remedy is to physically get up or hang my arm off the bed. Hope you find a resolution for yours mine is exacerbated by my thyroid not being well controlled currently when it is things settle down.
Yes, it would be lovely to sleep through without being woken every couple of hours with pain from shoulders to finger tips. I am on Hydrocortisone for my adrenal insufficiency and Carbimazole for my thyroid. Thanks for taking the time to reply.
I'm Hypothyroid with Hashimotos A few years before being diagnosed I was suffering from tingling arms and fingers. I was tested for allsorts, Carpal tunnel, thoracic outlet syndrome, ulna nerve entrapment etc etc. I had a year of physio and nothing explained or cured it. I ended up giving up and learned to live with it.
Shortly after starting levothyroxine for my Hypothyroidism, it stopped. I get the odd tingle now and then when my levels are off but for the most part it's gone. My GP thinks it's a coincidence but I have found hundreds of similar reports so I'm convinced there's a connection.
Hi, K-lady! Ask your endo if he could recommend a doctor who might be able to test you for peripheral neuropathy or a pinched nerve. Best wishes in finding out the cause. It must be so frustrating.
Hi koratlady3I have this and feet. I have autoimmune thyroiditis so underactive. It got a bit better initially after I was prescribed thyroxine. It hasn't gone away though. I was also dismissed by gp. In fact the gp wanted to diagnose functional neurological disorder after a particularly bad episode a few months back. I had low folate just prior to this and I started taking my b complex with all the bs in it and its settled again. It's definitely worse at night though and it can drive you mad!!
Supplementing B complex fixed it for me. When I got in the upper part of the range on my labs on B12 it went away. Just simply being in the "normal" range may not mean you have enough for your unique physiology.
Menopause and calcium issues can also cause tingling in hands and feet. I have had it caused by both. Also I have nerve damage to my ulna nerve diagnosed after a nerve conduction study which caused me to wake up with numb hands until I started wearing a splint at night.
I would suggest the Doctor consider the Ulnar nerve. (Cubiital nerve syndrome) elbow being being the site. I just had carpal tunnel surgery) getting slight tingling in my hand. The shoulder Ulnar nerve may also be involved
If only atnight you maybe bending your wrist...( sorta like a fetal position..suggest a wrist brace
I had that for a brief period of time when I was working way too hard with my hands. I would go to bed at night and they would tingle, and have that "asleep" feeling. It was awful. Your doctor can diagnose it really fast in office. I stopped over using my hands, and that was pretty much the end of it. I was hashimotos at the time, and have always had to watch my B12 levels. Hope you can find relief.
Mine sometimes does that. My doctor said it was probably my diabetes not the hypothyroidism. The doctor said diabetes was probably a product of hypothyroidism.