Is there a link with hypothyroidism and sensory peripheral neuropathy?

[Nomumma]

I have been told that it is Ideopathic (no known cause) I suffer from pins and needles and electric shock like pains in feet legs arms and hands and it is getting worse. I have been told it is progressive. I think it is linked to thyroid and possibly T4/T3 conversion. Anyone have similar problems? My TSH is 0.07. (Range 0.05 - 5.5)And T4 16. (Range 12 -25)

[Hidden]

I have been hypo for 11 years and went downhill about 4 years ago, symptoms appeared which I had never had before i.e. pins and needles in legs and feet (some toes felt numb) and shooting pains, which appeared mostly in hands and arms. This has been going on for about 2 years and I have recently started T4/T3 combo.

I had all the usual tests like Vit B12, ferritin, folate, Vit D3 etc done and apart from D3 (insufficient) everything else was not too bad, at least nothing below normal.

Although the T4 had worked for me for many years, conversion can reduce with age, and I am certainly getting on a bit now.

[Nomumma in reply to Hidden]

I too am getting on a bit got the GP to raise Levothyroxine to 125mmg from 100 but not really making much difference maybe need some T3.

[Hidden in reply to Nomumma]

I managed to get a trial of T3 through a private endo. Although to be fair I hadn't asked my GP but she had already said she wasn't sure what was going on with my TSH, going from raised to suppressed on increased dose of levo from 100 to 125 and still feeling unwell. The endo also requested further tests which my doctor did on the NHS so I am hoping that the T3/T4 combo works eventually.

[Marz in reply to Hidden]

Your B12 needs to be OPTIMAL - near the top of the range at around 800. This is still only a guideline as it is impossible to reveal what is happening with B12 at a cellular level - where it operates. Mostly absorbed through the Terminal Ileum. There is a new ACTIVE B12 Test - maybe investigate that on the tags or google ! I think it is also detailed on the main Thyroid UK website.

I take 200-mcg of B12 daily. You cannot overdose as any excess is eliminated through the urine.

[SilkyJ in reply to Marz]

Marz,

I take B12 injections and I still suffer same pins and needles and electric shocks as Nomumma. So, it cannot be B12 - at least, not for me.

Silky x

[SilkyJ in reply to Hidden]

The shooting pains could be fibromyalgia which is a lack of T3 in the cells. Your free T3 blood test may come back within range but the test only shows how much T3 is in the blood - not in the cells. If you have thyroid hormone resistance at a cellular level, like I do, then you will most probably be needing NDT, T3/T4 combination or T3 only.

Silky x

[DBillings in reply to SilkyJ]

Have you been diagnosed with the genetic form of thyroid hormone resistance and what were your symptoms?

[Hidden]

It's good you got your Levo raised, because your T4 isn't even mid range, is it? How long ago was it raised? I don't know much about it (I'm hyper) but I would say from reading other's comments you should try and get your T3 tested.

Given your symptoms though, you must really get those vits and minerals tested as jan4363 has suggested: B12, folate, iron/ferritin and vit D. Particularly B12, symptoms of pernicious anaemia link here:

pernicious-anaemia-society....

Post any results you get back, as being in range is not the same as being optimal. Electric shock like pains could be L'Hermitte's sign, explanation here:

neurology.about.com/b/2013/...

Classically associated with MS, but actually it's a common symptom of B12 deficiency. Either way, pins and needles should always be properly investigated, whether it be because you're not on enough thyroid meds, or not.

Hampster

[patterf in reply to Hidden]

I had pins and needles in my feet when they spread up my body I saw neurologist who said instantly thoracic lesions in sinal cord! Get your gp to refer you! My neurol. Says b12 symptoms are typically upper body! Gp shouldn't be diagnosing you! my gp said old age and anxiety!! discrimination! I'm 43! She had to eat her foolish words!!!!

[Hidden in reply to patterf]

This is very interesting. I asked a question about my own very extreme pins and needles on a post asking about how to interpret my thyroid results recently. I have been on Levothyroxine for about ten years for Hypothyroidism. I also have Rheumatoid Arthritis.

After spending a whole week coping with raging pins and needles and a deep heat I have realised that it's now been three years since the deep heat surges started in my limbs and joints - especially elbows and feet. I have had several bouts of pins and needles before (especially strongly in my elbows!) and have blamed RA inflammation. Not so sure now though.

I have had my B12 serum taken a week ago and it was fine but people here have helped me to query these results and I'm shortly going to start on B12 suppliments when they arrive in the post - just off my own back. My T4 is lower than yours at 10.8 but it is just within normal range. I will ask the GP if I can increase from 100mcg to 125mcg just in case this makes the difference but I suspect it won't as I've been up as high as 175mcg previously and have never noticed the impact of rises or dips in dose before now. Not sure what pins and needles is about at all but it's everywhere and I'm thinking of pushing my GP to refer me to a neurologist when I can summon the energy and inclination/ desperation to do battle with him once more!

I do fully relate to how freaky and unpleasant it is feeling that ants are running up and down you - at present my colony are having a field day on my left arm!! Tilda

[patterf in reply to Hidden]

It's hard to suppress the desire to get well again! Rheumatology are generally very thorough- a good place to start if you meet with resistance! Peripheral neuropathy is a neurological symptom first and foremost wether it is caused by diabetes or thyroid disease - neuro is your best bet and severe symptoms- well you shouldn't have to live with it nerves don't grow back again! A campaign of persistence! Jump threw their silly hoops! But just keep going back! Chin up and good luck!

[Clarebear]

I had horrible pins and needles in my hands, feet and head before diagnosis with hypothyroidism and on T4 only treatment. I am now on NDT and they are gone. I do still sometimes get numb arms and legs in the night, but much less than before. I agree that you need a fT3 test and some T3 when that comes back low. Xxx

[Hidden in reply to Clarebear]

How do you persuade a GP to test for T3 though? Mine won't because they say the senior Scottish Endo says its not necessary for thyroid patients T4 is enough. Mine got quite short when I asked and with RA and where I live (Orkney) its not a good idea to alienate a GP!

[Clarebear in reply to Hidden]

I'm lucky that my endo asks my GP to test it and he does. Otherwise I would use Genova o Blue Horizons, but this can obviously get expensive. .

[Hidden in reply to Clarebear]

I will look this up Clarebear - I can't see myself going down the t3 route without the approval of my GP though because of the disease modifying immune supressant drugs I'm on. I've never seen an endo.

[Marz in reply to Hidden]

..think it is time to ask your doc what their knowledge of T3 is ! All very well having a FT4 blood test but that does not tell anyone how that storage hormone is converting into the ACTIVE thyroid hormone T3 - a hormone that is required in all those trillions of cells that make up the body. Of course they will say the FT3 test it is not necessary - as it is more expensive.

I started on T4 in 2005 having been diagnosed with Hashimotos. All TFT's were in range - TSH FT4 and FT3 -but antibodies were high and the scan revealed nodes. Early last year I introduced T3 and after not feeling well throughout last summer I phased out the T4 and am now only on T3. Feeling better and coping with the summer heat of Crete better than before. Showed the GP a spreadsheet of my results from 2005 and she could see that the FT3 was always at the bottom end of the range - so was not converting.

Apolgies for hi-jacking this post !.....Good luck with your GP.......

[Hidden]

It's me that should apologise for hijacking this post really? Sorry!

I will try and see my GP today because can't stand another day of fizzing. I will ask her to read up on t3. Thanks. Tilda

[sallydigs]

I have peripheral neuropathy due to hypo but have been taking levothyroxine since 2005. I had electric shock symptoms when I was diagnosed hypo but as soon as I took 25mcg of levothyroxine that stopped but the tingling, burning is in my legs. Doctor is sending me to a neurologist. I have recently gone down to 100mcg after having been on 200 and 175mcg but did get hot so bit hyper. When I am hypo I have excruciating stiff painful neck/shoulder muscles so am dreading that happening again but want to reduce to see if being over medicated made neuropathy worse.

[1959wong]

I am starting to cry out for help, Peripheral Neuropathy as many people would know is very painful and the doctors can do nothing they don't even know the reason why, I have had every test known and all the doctor wants to give me is antidepressants. If anyone reads this their must be something I can do even typing this is painful.

[activelazy in reply to 1959wong]

How are you now?