Tingling extremities

Hello -

I posted a few weeks ago as I was getting tingling in my feet at night and, after hot baths particularly, my fingertips. That's now progressed to my feet tingling all the time and a numbness creeping up my calves at night. My left hand's also getting numb (the outer fingers especially) at night and I'm having to form a fist to get the feeling back.

I saw my (female) GP yesterday for a double appointment and she checked my reflexes etc. Bloods all came back as 'normal' (CRP, B12 etc) but my ferritin is still very low.

I have a history of B12 malabsorption and was having quarterly injections maybe 7 years ago, but the GP denies this is a problem now as my cells aren't enlarged. I do have hashis and psoriasis. I was started on 50mcg of Levo back in February and my doctor (a different one in the practice) has kept me on that dose until August, when he said he'll retest my thyroid levels. I know.

Obviously, the nerve thing is very concerning. The doctor wants to read around and do a few more tests including one for Lyme (we live in the Scottish Highlands) before 'rushing into' referring me to a neurologist.

I do think this could be B12 related - and am trying not to worry about MS - as other symptoms are feeling jittery, palpitations and headaches. I supplement with B12 spray and methylated B12 to around 3-4000 ug a day, also with methylfolate, D3 with K2, selenium, Solgar's Gentle Iron, B complex and Ester-C as well as zinc and magnesium citrate.

*I did read that increasing D3 means you need to significantly up your B12 supplementation. Could this be it? I stayed off the supplements for a week prior to these blood tests last week too.

Medicheck results in January said my folate, vitamin D and iron were particularly low.

Could anyone help? The tingling and numbness are keeping me awake, I'm exhausted and getting increasingly worried about MS or nerve damage. I'm 43 and have a 6 year old son. I'm looking for a bit of reassurance or constructive advice - I don't think I can cope with scare stories right now as my nerves are shot!

Thanks

[Hidden]

Oops, not sure how to edit my posts. I should also mention I tested negative for intrinsic factor and parietal cell antibodies in 2017 so hopefully not PA.

I'm strictly gluten free and have just started a pretty involved regime to address leaky gut and digestive issues (another long-standing problem) so am avoiding dairy and other inflammatory foods. I'm a normal weight, fairly active and don't drink or smoke.

[NWA6]

Hi Hidden i may have replied before but I have always suffered with this also, from my forearms down to my fingers and my left leg. I too have had many blood tests to rule out other factors and I’ve seen a neurologist, tested for carpal tunnel. I used to toss and turn at night to go to sleep because whichever side I was laying on would go numb within minutes. The only thing that helped was being adequately medicated (this was before I even knew the value of vitamin levels, which I never worried about because I’ve akways eaten healthy but I didn’t know about leaky gut) but ultimately it was always one of my first indicators of being under medicated.

Could this be a possibility for you?

[Hidden in reply to NWA6]

Definitely. I've been on 50mcg Levo for months now. The GP should be checking my bloods every 6 weeks and upping my dose but he won't. I'm stuck until my next tests in around 4 months. I'm aware that this isn't how my Hashis should be treated.

[Hidden]

Hello there - I also suffer with tingling and numbness in my hands (I have hashi) My folate levels were very low, Dr prescribed Folate and since I started taking a folate tablet every day the tingling has stopped.

[Hidden in reply to Hidden]

That's quite reassuring. Maybe I'll up my folate and see if it helps. Thanks!

[Hidden in reply to Hidden]

Do you mind if I ask what strength folate tablet was and where you got it?

[Hidden in reply to Hidden]

Hi, it's from Amazon. Jarrow Methylfolate 400mcg. I think there's a higher potency one too - which I might buy 😊

[BadHare]

My B12 tests came back negative, despite symptoms of low B12/PA. I hadn't stopped taking B complex at all for the first test, then for two weeks, when it should have been 3 months, so a false negative.

My paresthesis (burning itchy wool socks & gloves sensation) was reduced partially when I started taking NDT & T3, then further when I started taking Solgar sublingual methlcobalamin. I switched brand twice to Jarrow & Cytoplan, & the paresthesis & fatigue returned as these didn't work for me, Someone on one of the forums I'm on said she was better with Jarrow, so perhaps try a different one to see if your tingling is reduced.

I've been self-injecting hydroxocobalamin for about a year with the sublinguals if I'm away when I'm due a jab. All three brands of different strengths have been fine, though UniPharma B12 stings.

[Hidden in reply to BadHare]

Do you mean you had a false negative for PA? I know the tests are notoriously unreliable. And I too was using a sublingual spray before the test. I've considered self injecting but wouldn't know where to start... they stopped giving me injections when I was pregnant and refused to start them again afterwards. I'll try different brands of methylated B12 and see if things improve 🤞

[BadHare in reply to Hidden]

Yes. My diet is high in B12 aside from regular supplements.

Why on earth would they stop your injections?!?

[Hidden in reply to BadHare]

I was told they didn't offer them any more. That was in 2012. My new doctor here in Scotland is adamant there isn't a problem. I do have atrophic gastritis (diagnosed 2 and a half years ago) and I managed to get a gastroscopy in December last year, having paid to see a private specialist and travelled 12 hours to Edinburgh and back. He recommended it to my GP, who was unimpressed but finally agreed to refer me. It was a 6 month wait. I'd explained to the consultant before the procedure I suspected it could be autoimmune as I've tested negative for H pylori twice. The letter afterwards said the results of the biopsies were 'reassuring' but I have no idea what they were testing for.

The negative results for intrinsic factor and anti parietal antibodies in 2017 came from a blood test. I'm not sure what to do next.

[BadHare in reply to Hidden]

I despair!!!

I get my B12 from a share group, & there are videos on YouTube showing how to inject yourself, should you want to try. The videos are mainly American, where they use multi-use(?) B12 bottles rather than the individual vials we use here. Even if you try subcutaneous injections with a small “fixed’ needle before you’re used to intramuscular, you might feel better. The vials are about £33 for 40, depending on where they’re imported from, which is cheaper than sublingual B12.

I bought needles & syringes on eBay, but found my local drug abuse centre will give me some as well as dispose of my sharps box. Not everywhere is so helpful, but it’s worth trying. 🤗

[Hidden in reply to BadHare]

Thank you so much. I'm definitely going to look into this!

[shaws]

I'd also copy and paste your post onto the Perniciious Anaemia Forum for comments.

healthunlocked.com/pasoc/po...

Don't worry about scare storeis and it is important that all our vitamins/minerals and thyroid hormones are optimal.

I note you've been on 50mcg of levo for months.

Ignore GP and if you can afford you can get a Full Thyroid Function Test from a private lab. it is a home pin-prick test and make sure you are well-hydrated a couple of days before blood draw. This is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Doctors seem to be fixated on the TSH alone and once we're within the 'range' they stop prescribing. They seem to be completely ignorant that the aim is a TSH of 1 or lower. Not higher.

All blood tests have to be at the very earliest and fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take it afterwards.

This helps keep the TSH at its highest as that's all the seem to know. (p.s. Thyroid Stimulating Hormone is from the pituitary gland - not thyroid gland). A blood test is taken every six weeks until TSH is 1 or lower.

Always get a print-out of your results, with the ranges, for your own records and post if you have query. All vitamins.minerals have to be optimal so GP should test, B12, Vit D, iron, ferritin and folate.

The aim is a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges.

thyroiduk.org.uk/tuk/testin...

[Hidden]

Hi, yes - I did a Medicheck test back in January. It was useful in that I could share the results here and get advice, and I plan to do another in a month or two.

Unfortunately my GP took exception to my taking the initiative and didn't take the results seriously. My iron, folate and vitamin D were extremely low. He said many people 'get by' with low iron and that T3 isn't worth consideration. He also dismissed this forum as somewhere people come 'looking for problems'. So private test results will get short shrift from him and won't influence him to up my Levo dose. He was pretty annoyed at my wanting to avoid Teva too. I think realistically the only way to increase my dosage is to buy Levo myself and I don't know if that's even possible. Also, if I self treat I'm likely to receive even less help from him. I'm stuck.

[SlowDragon Administrator in reply to Hidden]

Your GP sounds a nightmare

Can you change to a different surgery?

Or see a recommended thyroid specialist privately, who will override your GP

There's private options in Edinburgh

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

But FIRST before making a private appointment would strongly recommend you retest thyroid and vitamins

Are you self supplementing to improve your very low vitamins?

Come back with new post once you get results and ranges and members can advise on what still needs improving

Suspect your TSH will have risen and show you need dose increase in Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to regularly retest vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Hidden in reply to SlowDragon]

Hi,

I'm planning to get another Medicheck test - although the finger pricking thing is grim! I did show my last results to my GP but it put his nose out of joint that I'd questioned his 'expertise' and he was pretty dismissive of it all. Even my woefully low iron was waved aside as apparently many women 'get by' OK.

I'm not sure there were any private options in Scotland last time I emailed Dionne. I'm also absolutely convinced I've got real issues with B12 but don't know what type of specialist I'd need to see about that.

I did try phoning another surgery but it didn't look too promising as they said I didn't fall within their area so I'd have to write a letter asking the deputy manager. No idea how I'd word that as I may well come across as a nuisance patient who won't accept advice from their usual GP...

[SlowDragon Administrator in reply to Hidden]

There is at least one recommended private endocrinologist in Edinburgh on Thyroid Uk list.

Personally rather than DIY finger prick test I pay extra for private blood draw at local private hospital. Is that an option you could do?

On Levothyroxine it's essential to have good levels of ferritin, folate, B12 and vitamin D

If you can't retest ......as B vitamins are water soluble you could just supplement anyway. You pee out any excess

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (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 Jarrow B-right is popular choice, but is large capsule

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

As you also have low B12 symptoms, you might also add a sublingual B12 - eg Jarrow B12 1000mcg. Perhaps initially 2-5 per day and reduce to just one per day as symptoms improve

Link about low vitamin D and low B vitamins

drgominak.com/sleep/vitamin...

Low ferritin, eating liver or liver pate once a week, other red meat and iron rich foods like spinach, pumpkin seeds, prawns and dark chocolate plus a daily good quality vitamin C may help improve iron absorption

[Hidden in reply to SlowDragon]

Thank you for this. Unfortunately the only private hospitals are Glasgow and Edinburgh (5.5 and 6 hours away respectively)! Absolutely nothing I'm aware of in Inverness. Why oh why did we move to the back of beyond?!

I'll deal with the finger prick tests. The fact that my partner was watching at the time and wincing dramatically didn't help.

The info about B vitamins is really useful. I put a load of info together today about B12 deficiency and left it for my GP today. The receptionist was as ungracious as ever...

I'm hoping this is the cause of the tingling and numbness. They're getting worse, disrupting my sleep and I'm absolutely exhausted. So now the paranoia about MS or diabetes begins... this needs sorting out and my Levo needs increasing too.

[SlowDragon Administrator in reply to Hidden]

Your Levothyroxine dose being so low will almost certainly be the cause

Many of us need dose extremely finely tuned

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

NHS guidelines including that most patients need between 100mcg and 200mcg Levothyroxine

Plus what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

nhs.uk/medicines/levothyrox...

NIcE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

[Hidden in reply to SlowDragon]

Thank you again. I really appreciate your help - I actually feel quite tearful because it's such a battle with my GP and I'm actually scared of questioning him now. The others in the practice (it's small, so only two others) aren't really any better. Your advice and reassurance mean a lot. I'll try again to get an increase in my dose.

I follow the guidelines and take my Levo first thing, wait an hour to eat or drink (except water) and only just found out about the calcium thing. I take iron and magnesium 4+ hours later. Yes, I need to be taking more Levo. I'll ask for it and maybe they'll listen. Thanks again. This community is a lifesaver.

[SlowDragon Administrator in reply to Hidden]

Suggest you try to explain how ill you feel and could you please get bloods retested.

I had dramatic reaction to inadequate dose Levothyroxine. Was tested for numerous serious diseases - MS, pituitary tumour, neurological degenerative disease, pheochromocytoma, etc.......it was ALL due to inadequate dose of Levothyroxine combined with hidden unrealised gluten intolerance and vitamin deficiencies.

I wouldn't have made my complete and full recovery without fantastic help on here.

[Hidden in reply to SlowDragon]

Well thank you again. I wish doctors were more like the fantastic people here. You're doing an amazing job and I know who I'd trust with my health. It's a real education being able to ask these questions and receive such knowledgeable advice. I feel better knowing that being under medicated is likely to be the cause for these odd symptoms and I now have some direction to go in rather than flailing about feeling completely overwhelmed and confused

[Marz]

b12deficiency.info/signs-an...

Within the above link is a helpful link to a Draft letter you could amend and send to your GP ... Also on the PAS main website is a section for Medical Professionals to help them understand PA and B12 Deficiency - it is hugely misunderstood ! and the cynical old me thinks it is connected to the fact that a vitamin cannot be patented so no money in it for Big Pharma or the Prescribers. Perhaps print it off and send it to your GP and ask for it to be attached to your notes !

[Hidden in reply to Marz]

Thank you for this. I know he's got me down as neurotic as he has suggested it's all down to anxiety and has referred me for counselling in the past... Unfortunately, presenting him with any information or results from outside sources just antagonises him and he's extremely dismissive. I'll print out the info though and am really hopeful I can change surgeries, but again that might be a battle. Why is it so hard?

[Marz in reply to Hidden]

You could write a letter as detailed in the first link I posted above - it's your body and you are paying his salary through your taxes.

So how are you treating the low results of Ferritin - Folate and VitD ? Maybe you need to increase the dose of some of them

[Hidden in reply to Marz]

Hi, I'm taking Solgar Gentle Iron (1 x 20mg daily) with their Ester-C (1 x 1000mg daily), Jarrows Methylfolate (1 x 400mcg daily ) and BetterYou Vit D3 with K2 oral spray (each spray has 1000 iu and I've just upped that to 5 sparys daily). I don't really eat eggs or red meat - occasionally some gluten free black pudding. But I'm aware my absorption is very compromised and it's unlikely I get much benefit nutritionally from what I eat. This whole thing, thinking about it, goes back to childhood: anxiety, being taken to the doctor with stomach issues and palpitations, flaky nails, feeling cold all the time. There's so much going on and I'm not getting any direction or support from my GP. I feel like I'm getting more ill and am completely helpless to do anything about it - this is a lot to deal with alone and navigating my way through books and online information is exhausting!

[Marz in reply to Hidden]

Yes it certainly can be exhausting - but learning so much from books and websites gives you the confidence to go it alone. I live in Crete and mostly take care of myself with annual blood tests and have reached almost 73 in reasonable health - but also still learning ...

Did you look at the website I posted for you in my last Reply - there you will find the letter you can send to your GP for a much needed wake-up call Also so many interesting facts to digest - also films and videos !

[Hidden in reply to Marz]

Wow, almost 73! The way I feel I'm convinced I won't see 50! Joking aside, it's a scary prospect as my little one is only six and I'm genuinely terrified of not being around for him.

I did take a look at the site and am going to print out the information and give it to the GP I saw on Tuesday. She admitted she wanted to do a bit of research to try and figure out what could be causing the neuropathy so maybe she'll be open to a bit of information? I really hope so.

[Marz in reply to Hidden]

That's a positive start. You may need to personalise the sample letter to make it your own ! We always feel better when we are making a start on things ... onward and upwards.

I have peripheral neuropathy and both lower legs/feet are numb. Have only just given up teaching yoga as I am having intensive Physio three times a week so sadly do not have time to take the two classes ! I had spinal surgery for stenosis - back in 2007 - which I think may have been caused by a LOW in range B12 - around the 300 mark for many years. This could well have been caused by the lack of a Terminal Ileum - due to many surgeries for Gut TB and then Crohns. B12 is metabolised mostly in the Terminal Ileum - so without one I was in decline and the results were skewed as I had always taken a B Complex.

[Hidden in reply to Marz]

I definitely think supplements have skewed my results. But I daren't not take them for any amount of time. It's all so tricky! I have to say, you're very inspiring - just what I need at the moment. Thank you.

[Marz in reply to Hidden]

You'll get there 😊