Tingling extremities : Copied and... - Pernicious Anaemi...

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Tingling extremities

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5 years ago•3 Replies

Copied and pasted so apologies for any strange formatting! This is my first post on the PA page.

Hello -

I posted a few weeks ago on Thyroid UK 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, dizzy spells 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!

The replies I've had from the TUK community have been helpful but it was suggested I copy and paste to here too.

I should also mention I tested negative for intrinsic factor and parietal cell antibodies in 2017 so hopefully not PA. I have gut issues including gastritis (negative for H pylori) and have been taking Ranitidine for a few months to try and calm my stomach whilst simultaneously trying to improve gut health.

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.

That's all! Sorry for the long post.

Paula6

5 hours ago

Hi Littleisland 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?

Littleisland

LittleislandPaula6

5 hours ago

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.

1 likeReply

Kes1234

5 hours ago

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.

Littleisland

LittleislandKes1234

5 hours ago

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

1 likeReply

BadHare

4 hours ago

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.

Littleisland

LittleislandBadHare

4 hours ago

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

BadHareLittleisland

an hour ago

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

Why on earth would they stop your injections?!?

Littleisland

LittleislandBadHare

2 minutes ago

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.

shaws

shawsAdministrator

2 hours ago

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...

1 likeReply

Littleisland

28 minutes ago

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.