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Pernicious Anaemia Society
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Tingling, numbness and weakness in both legs

I have had tingling and numbness in both legs for about 3 weeks now and have been very tired, with a poor sleep pattern. I SI every 3 weeks and the "free" one on the NHS at week 12. My surgery is on special measures and have no full time GP's they are all Locums but, I managed to get an appointment on 11th October the GP was fairly sympathetic and said my symptoms could be related to my B12 level, he suggested I should see a Haematologist. I stated the NICE guidelines about injecting on alternate days and he at least looked this up. He told me "that an Urgent appointment should be sought with a Haematologist but, the Haematologist will decide whether to administer B12!" 2 days later I had a letter inviting me to book the appointment with 1 of 3 hospitals.. 2 had no appointments available and the 1 I could book is for 5th December! Its very difficult to get a GP appointment (in fact its difficult for the surgery to answer the phone), but I went back on Tuesday and saw a different GP, he decide to take bloods and then will decide whether to treat me. I know my level will be high (I haven't told him I self inject - i told a nurse before Xmas and she refused to give me my free one and asked me to leave the surgery!)

The GP is phoning me tomorrow to discuss my blood results and I'm not really sure how to counter the fact he might refuse to administer loading doses?

PS i have been SI since Tuesday - daily but my neuropathy has not improved.

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Hi dsm2408 The British Society for Haematology guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Your doctor should treat you immediately and also check your Folate level

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In terms of the injections I suggest that you cross that bridge when you come to it - though sounds as if you have taken matters into your own hands anyway if you are injecting every day.

Recommendation on loading doses is every other day until symptoms stop improving - that doesn't just mean neurological symptoms.

It sounds as if you have been under treatment for quite some time but the pins and needles have developed quite recently - which does suggest that they may not be related to B12 and there may be something else going on. Do you know what your folate levels are like at the moment? Has your thyroid function been tested recently?

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I asked the 1st locum about my folate level. He said it was normal (i had a heart clinic check a few weeks ago). But I got the impression he didn't know the relationship b12/folate.

Thanks for the reply by the way!

The 2nd Locum requested bloods to check b12 and folate and also a liver gamma gt test? He said for alcohol abuse! Bit peeved by that suggestion !

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No discussion about thyroid though

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Tingling, numbness and poor sleep pattern happen to me when my potassium is low.

It went low as soon as I began B12 treatment 3 years ago (new red cells being built and repair of cells uses up a lot of potassium, happens to a lot of people starting B12).

I supplement with potassium gluconate every day. Some people do fine with high potassium food. For some it's not enough and they need the gluconate form. On my insert (leaflet) with hydroxocobalamin ampules there was a mention of possible 'hypokalemia' (low potassium). I use methylocobalamin form of b12 now and doing great, touch wood.

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You seem to have mis read me somewhat. I take potassium for hypokalemia not hyperkalemia. Hypokalemia has the same dangerous side effects you mention.

It's the opposite.

I have never had hyperkalemia in my life. If one has normal kidneys and heart there is absolutely no problem taking potassium.

My potassium level with supplementation is perfectly normal. I get it checked by my GP every couple of months along with all my other bloods. I'm doing so well now I can't believe it. Bedridden two years ago.

However, if I don't take potassium (not a huge amount necessary) I very quickly get hypokalemia. But really I'm very happy to take a few potassium pills along with my B12 injections if it means I have an active life :)

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Actually, as I said, 'hypokalemia' is warned about on my prescription hydroxocobalamin (Neo B12) B12 ampule leaflet, especially 'when treated intensively', which is why I was trying to help dsm4208 who is self-injecting quite intensively (a good idea when very deficient in B12) :

medsafe.govt.nz/profs/Datas...

I quote:

'Hypokalaemia and cardiac arrest have been reported when megaloblastic anaemia is treated intensively.'

Please read 'hypokalemia', not 'hyperkalemia'.

And, this is not intended to be rude, but please could you think about how the phrasing comes across when you write 'you should' posts. What I like about this forum over the years I've been here is that we share our experiences here, we don't lecture people. Of course dsm4208 is free to ignore the leaflet warning.

Anyhow, there it is, just in case it's of use to anybody suffering tingling and numbness which can be quite worrying. It's under 'warning and precautions'. Good luck all.

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ribbon If you are prescribed potassium supplements due to hypokalemia then taking potassium supplements is indeed ok for you as you need them to keep your levels up. However, supplementing Potassium (when you are not deficient) can raise your levels too high (eg hyperkalemia) which can indeed be dangerous, which is what Hidden was trying to say I think.

Hypokalemia is indeed mentioned as a warning in the B12 leaflet though this would happen during the initial B12 loading doses and from what I can tell it is rare! In someone with anaemia due to B12 deficiency giving them a load of B12 kicks off a reticulocyte burst (ie B12 being available when it wasn't before = a bunch of red blood cells being produced very quickly in one go to correct the anaemia). This uses up lots of extracellular potassium which may lead to hypokalemia and the ensuing symptoms and risks. Very few people react to their initial injections like this though from what I can tell... Once on regular B12 your B12 levels should never be low enough to cause anaemia (from a B12 deficiency) so you wouldn't have a reticulocyte burst again leading to B12 related low potassium again... I'm not a medic though.

My Dad ended up blue lighted to A&E due to severe hyperkalemia (his meds for his chronic kidney problems had been changed and he reacted v. badly!). His heart rate was abysmal and his ECG terrifying - he was life threateningly ill and ended up in HDU and almost had to start dialysis to bring levels down quickly enough.

I cannot stress enough that too much potassium can be fatal so supplementing this should only be done under medical supervision.

dsm2408 Maybe also ask to be referred to a neurologist if this hasn't been done already to check out your neurological symptoms.

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Wholeheartedly agree with your comments taka.

And ribbon, in support of Hidden's comments above, I have to say...

Potassium is one of the most dangerous supplements that can be taken if it’s not needed. Potassium is very finely balanced in the body and over-supplementation can happen very easily (thus causing hyperkalemia). And this does indeed cause the heart to stop (potassium is one of the three drugs used in executions).

Many people are completely unaware of how dangerous potassium can be, often assuming that it’s just another supplement. So spelling out the danger directly and explicitly is not unwarranted...it’s something I also do if I spot any advice here about taking potassium supplements.

dsm2408 ...here’s a list of the potassium content of some foods...this is a safe way to up your potassium levels if you thi bk you have a problem. But the best idea would be to ask your GP to test your potassium levels - cause then you can rule it in or out as a potential problem...or not 😉.

Here’s the link:

apjcn.nhri.org.tw/server/in...

A couple of thoughts:

Your serum B12 level will be high because of your injections (including those you’ve had via by the surgery) and once B12 injections have started (from any source), testing serum B12 levels is not recommended (unless looking for low levels). Your GP should therefore not rely on a high serum B12 level to refuse to treat a previously diagnosed B12 deficiency (whether from PA or another cause). It would not be unusual to see a level over 1000 where injections have taken place (sometimes for many months afterwards). Mine is always over 2000ng/L and we have seen them here as high as 5999ng/L (the highest point in the measuring scale).

Here’s some links to information about problems with the serum B12 test and testing during treatment):

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

As Gambit62 says above, if you have been B12 deficiency for some time but have suddenly developed neurological symptoms (the pins and needles) then it’s likely that there may be another cause. For instance, people with absorption problems (the main cause of B12 deficiency) often develop other deficiencies to...some of which can cause pins and needles. So...

Has your GP tested ferritin (one marker of iron deficiency anaemia), vitamin D and folate recently? Deficiencies in any of these can cause the symptoms you describe.

It’s also worth noting...over supplementation with folate or vitamin B6 can also cause pins and needles (but not sure if you are taking any of these - just mentioning, in case).

And here’s something information about B12 treatment safety:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

And a research paper written by an American Consultant Haematologist...the last couple of paragraphs speaks to the fact that many people need more frequent B12 injections to get and stay well...and that there is no reason to advise against this or, indeed, to advise against self-injection 😉.

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections) .

Might be something for in the above links that help with your GP...but post again if you want more advice or more guidelines to show your GP.

About neuropathy in general....if this is due to B12 deficiency, then neurological repair can take some time (for some, many months...up to two years...so it would not be unusual to see no improvement yet.

If, as is more likely the case, this is due to another deficiency, then the neuropathy shoild resolve once an identified deficiency has been addressed.

Having said all this, there are many causes of peripheral neuropathy and if this persists, it would be usual for a GP to refer you to a neurologist so that any other potential underlying causes can be ruled out.

Good luck...hope all goes well 👍

P.s. also agree with gambit about getting thyroid tested. Most GP's only test TSH but accurate thyroid status can only be ascertained by testing TSH, FT3, FT4 and the thyroid antibodies TPO and Tg (to rule out Hashimoto's thyroiditis).

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Yes, took two years of high dose B12 injections for me for neuropathy symptoms to abate. Thankfully all gone now.

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Hi ribbon, would you mind explaining your high dose you speak of. I am wondering if I am doing enough. I still have numbness in my face at times and occasionally hands and feet. I am doing every other day injections and I am 5 weeks in of doing this. I just want this numbness in my face to be done!!! I am trying to be a patient patient but it is good to hear outcomes like yours that even over a period of time of 2 years there is still hope!

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Thanks @taka. Yes, I agree re being ok if prescribed etc.

I don't actually need a prescription as it's simply hypokalemia induced by intensive (very intensive in my case) B12 injections as per B12 ampoule leaflet warns re hypokalemia & intensive treatment. If I left it without supplementing I would feel awful.

It works wonderfully for me and I don't need massive amounts or slow release or anything like that, just a few over the counter 99mg pills.

Of course, I only ever share my experience here. I wouldn't dream of dictating anything. I always preface my posts with the fact that it's my personal experience. I've had so much great help from others along the way.

Sorry about your Dad. I'm lucky as I mentioned below re heart & kidney being normal. I wish everything else was!

My potassium remains at 4.3. Just had it checked two weeks ago.

All best to you.

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Not for me. Far from a few weeks. I still need some potassium supplementation and my potassium level remains normal every time so it's not too much for me and makes me feel so much better. I can only speak from my own experience.

I'm two years now on big doses of B12 for central nervous system healing and still doing a lot of healing. Huge improvement from being bedridden to active.

Maybe it's because I 'm still seeing improvements and interestingly still seeing higher Red Cell Count every six months or so (this has been slow but a welcome upwards trend), that I 'm still using up the potassium. It took a long time of injecting just to get into the Red Cell Count range which I had been under for years. I can really feel the difference now it's improving and intend to continue with the potassium (and folate and other minerals and vitamins).

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Ok. Thanks for all the responses! GP phoned me to tell me bloodtest result.. he said folate was normal but, B12 was "too high and it needed to come down" he was cancelling my next nhs b12 jab and would test again in 3 months.. he conceded that waiting 7 weeks for a haematology appointment was too long and he would try to move it sooner. He has also referred me for an urgent Neurological appointment.

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Sorry dsm2408...just spotted this after posting my reply above.

Nonsense about the B12 being 'too high' (see reply above and information that I've left there for you). B12 is almost always high following injections...because you’ve had injections. The usual reference ranges no longer apply.

Good news about the appointment with a neurologist...right thing to do so that your neuropathy will be properly investigated 😉

Good luck

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Didn't know anything about potassium!

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They never do! I agree with @Foggyme re potassium being taken when not being needed but I did stress that all along.

The leaflet with the B12 ampules is very clear. If you're using B12 intensively your potassium can fall. Hypokalemia is dangerous.

Agree as well if you're on B12 ages and suddenly get numbness etc. That's a different story. Over and out!

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Thanks for your input Foggyme Hope you're doing well these days. Re potassium: Just sharing my own experience really. I wouldn't dream of being prescriptive about it. The potassium works like a miracle for me. Just a few 99mg pills whenever I have tingling and numbness or muscle pain and it vanishes.

My potassium is always the same whether or not I supplement i.e. 4.3. My sodium is always 139/140.

I'm lucky to have normal kidney, heart etc. If only my B12 transporters worked, now that would be something...

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Yes, well...you’re doing the right thing 'cause you know what your potassium levels are...not everybody will be so 'clued-up' 😉😀. So it’s good that you know what works for you.

About the transporters...hmmm...if only it was that easy...that would be something indeed 🙄.

Me - not been to good recently...but just started on immunosuppressants so hoping for better things soon (once my system learns how to tolerate the nasty beasts 😖).

And thank you for asking...I sometimes forget that Admins have health issues too...and beat myself with a big stick when I can't be here as often as usual...or as often as I'd like.

Hey ho...here’s for better days ahead...for us both 🤗

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Keep going strong Foggyme Dratted auto immune issues are a real struggle. Best of luck with your treatment. And always good to see you around here xx

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Thanks ribbon...and forgot to say, I also struggle with potassium...so difficult to get enough from diet...and the drugs I take also deplete potassium...so yes, I have to take it too (prescription from docs - 99mg OTC variety wouldn’t even touch the sides 😉).

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Ha! 'Touch the sides'. Such a great phrase Foggyme :) Sorry to hear you have the potassium issue (a serious version of it too!). Glad you know what you're doing. For me I'm on very large doses of B12 and folate and still repairing even though my energy has really picked up this last six months. I was left undiagnosed with pernicious anaemia for decades and only found it by getting my hospital files. That's why I really went for it with the B12 & folate after someone mentioned a Japanese study that uses 20mg injected daily for Central Nervous System repair (on another great forum). Thankfully it's working. Fingers crossed for both of us...

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How spooky is that...I too was undiagnosed for many years...and when I was I was under treated, then B12 injections were stopped because of B12 'toxicity' (that old chestnut. Ha). Only discovered that I'd been diagnosed with pernicious anaemia when I got copies of my notes...and also spotted positive antibody tests that had been ignored (along with others too).

Isn't if dreadful that so many of us have to become our own experts just to get adequate medical treatment (though I'm sure that there is better out there - we just tend not to hear about it here - with the exception of the very welcome good reports that pop along occasionally 😀😀).

Really pleased that it’s all starting to work for you...and that you’re working for you too.

Long may that continue...

X

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Thanks @Foggyme. Hope all goes well for you too. Yes, it's shocking how much our stories match. Funnily enough though it was a kindly gynae who decided I need a (really thorough!) blood work up and he decided to test MMA (which I hadn't even heard of at the time) and homocysteine. I had mentioned my Mum and Granny had PA so I guess he wanted to rule it out. Well thankfully he ruled it in, but just a pity it was decades too late! So far so good, but I'm sure I will probably need more advice again some day - you know how these autoimmune horrors are...lets' hope we avoid any more of them x

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Just had through the following.

B12 serum 1696 ng/l

Folate 12.1 microg/l

I SI twice about 10 days before the test. And recommenced SI straight after. God knows what the level is now! I last SI on Sunday and have decided to wait and see what dates i get for Haematology and Neurology appointment..

Many thanks again for the advice and support.

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Morning, so i have had the information come through regarding booking my "urgent" neurology appointment. Choice of 4 hospitals to give flexibility, 1st available appointment 22nd February ... The muscle weakness is now also apparent in my arms.. I haven't SI'd since Sunday, I'm wondering whether I should?

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So, on Friday I walked into A & E (on the advice of my GP). I explained the symptoms I was experiencing, with both arms and legs having muscle weakness and numbness. the doctor examined me and said that it wasn't neuropathy as the weakness was "symmetrical". This suggested it was blood related, so he took bloods to test, he also said he was concerned about my B12 TOXICITY! An hour or so later, he came back to say blood test was normal, again apart from my B12 toxicity? He referred me back to my GP and suggested that I should seek help from a Neurologist.. He also told me his job was to help people in life threatening conditions! I was so surprised I forgot to ask for a copy of the blood test..

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