Please can anyone help - I feel pretty ill but not sure I can even describe it. My neuropathy in my lower legs is unusually bad, bothering me at night so I can't sleep and in the day to the extent I feel the pain in my left leg/shin may be a hazard driving. Sometimes I feel very weak and as if I can't quite get enough oxygen. This has been going on for some days.
The main thing I would say is it feels as if my blood is fizzing. That's really just a metaphor. My ears hurt, deep inside. My pulse is on the low side (about 55 resting) and blood pressure is usually lowish though it has risen in recent years to about normal (175/120). I feel wobbly and not quite safe driving or on my feet. I had to drive for an hour yesterday and felt a little bit all over the place. I have had brain fog in the past to the extent I couldn't remember how to start the engine - this is not like that, it's more a lack of focus. Or maybe I'm distracted by the pain in my legs.
Usually when neuropathy gets worse I take more B12 and make sure I take my folate religiously. After 2-3 days the neuropathy subsides to normal (bearable) levels. This time it isn't helping
Bloods taken in April were pretty good -- MCV is in the normal range for the first time since B12D diagnosed in 2016 (it's slowly gone down with SI but it is 91 now, 101 being top of normal range). Folate, ferritin and vit D are ok (though given I take folate and vit D daily i'm a little surprised they aren't higher).
It may be stress. I was told last week my osteoporosis is quite bad and I'm trying to decide whether to take the alendronate that has been prescribed. My GP (new one, yet again) seems clueless. So I'm researching osteoporosis like mad (bone density dropped 10% in last 5 years; I'm 59 - osteoporosis and PA both run in my family).
Does anyone recognise these symptoms? Maybe it's panic-attacky? My feet hurting badly during the day is a significant worsening. Of course, it's unusually hot just now. I don't feel this is enough to go to the GP with but I feel lousy. Neurologist is booked -- next January...
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Mashie44
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Nackapan Thank you. I'm looking at the results more carefully -- there is an alert for blood glucose but some other test made them conclude it doesn't matter (GP doesn't review these with me, I just get sent them and look things up).
Neutrophils, white cells, platelets, lymphocytes are almost bottom of range but not outside it (which often seems to be the case when I feel lousy - GP said this just means I will heal slowly) .
Mean corpuscle haemoglobin and MCH concentration are both very very close to the top of the range - again, I don't know what that means, if anything. More research!
Is there a guide somewhere on this site for interpreting blood results? I seem to recall one...
I have had this condtion for many years, always had pins and needles in head but now spread everywhere. What you described is exactly how I feel and yet when i attend GP, they treat all the symptoms seperately. I must admit I have only just put them together. It is painful, I try to tell people I can walk because I know how but, a lot of the time my lower legs are numb and in pain with extreme pins and needles. I have weird spells almost daily now and I also has osteoarthritis and now under heart specialist.
I inject myself about once a week. If I leave it for 2 weeks I feel lousy. Usually the reminder is that my neuropathy gets worse, but at the moment it is constantly bad.
I'm taking folate as metafolin, 1000ug. I've taken it since I was found to be deficient and it has brought my levels up 13 (top of range is 20 - 3 is fine just given how much I'm taking, I'd expect it to be higher). It is Solgar and more expensive than folic acid.
have you had thyroid tested. I was diagnosed with B12 deficiency just over 2 years ago, neuropathy etc so SI these days every other day. However I became really ill in November with vertigo, weakness, legs didn’t work…… Blood test revealed TSH of 67 (should be 1-4). Since medication i am gradually felling much better and have since learned B12 and thyroid deficiency often linked
Thanks for the suggestion. I had TSH tested in April, it is normal range:
Serum TSH level - (SRa8249) - A Normal result 1.12 mU/L normal range 0.30 - 4.20mU/L
I don't know about TSH but that looks ok to me. I have however learned to worry when results are 'normal' but consistently towards the bottom of the range - as has happened with ferritin and folate and vit D which eventully went below and into deficiency....
Would you agree this level is ok? What you describe is quite similar to how I feel.
My husband thinks I have vertigo but I don't agree, it's possible he's right I lose my balance more often than he thinks I should but I don't fall over, I just have to grab something to stay upright (usually him) but the feeling goes away in a few seconds. It isn't out of the blue, it happens if I move, especially if I move suddenly - I just sort of lose my bearings.
Yes. TSH looks normal. What you describe is exactly what I am experiencing. Since treatment for low thyroid much better but still not as I was. Maybe my problem is vertigo; all I knew is it makes me feel very insecure when I can’t casually turn my head to look if it’s safe to cross the road. I have to stand still then turn my head…..
I know that feeling about crossing the road! I hope you feel better soon. I'm looking more carfefully at my bloods and think I should go to GP again. Thanks for the quick reply! Take care.
I can can image what your going through must be hell.i feel similar 4weeks before my Jag ,however be carfull the leg burning and movement in the leg could be the start of restless leg I have had it for twelve years and when it decides to play up there is no way you get a winks sleep I end up in tears I'm so bad .as you say docters can't put it down to lack of b12 but it is it took me a long time checking everything I ate as well to see if it would help and I find if I have a fizzy drink or chocolate it was worse so I do not take them now it help a little .plus I'm on a medication that helps parcison only a mild one .
you poor thing. My uncle had restless leg syndrome and I really don't want it (and fear it could be starting). Neuropathy in my legs started in 2007 and has slowly become worse, also I have lost the reflex in my left leg below the knee. Driving is worrying because occasionally it twitches - fortunately it is my mostly left leg and I have an automatic car!
I had symptoms that were similar to what you describe. Especially the wobbly feeling and the buzzing blood, also severe brain fog. At the time I was eating a high carb, low fat and probably due to malabsorption, low protein diet, I was on a plant based diet.
After having some success, at first with oral supplements, and later with B12 injections, I decided I needed to see if reintroducing eggs and meat in my diet would help me recover. I was struggling mainly with low energy at the time, but also poor mood bordering on depression and the issues with blood/palpitations/ neuropathy would return with vengeance if I missed a B12 dose. Also my cognitive decline hadn't healed to a satisfactory level yet. Long story short, I wasn't progressing but coping with B12 it seemed.
When I ate a few runny eggs, it felt like it went straight to my brain. I also started eating butter and fatty yogurt. The brain and nervous system are made of fats and cholesterol. This is what I was missing in my diet. I believe that this was needed for my body to heal. The membranes of our cells is made of cholesterol.
Now I'm on an exclusively animal sourced diet. I eat lamb, beef, some cheese, yogurt and fish. No vegetables, low carbs (there's some natural sugars (lactose) in dairy, but for the rest, nothing.
In other words, it may serve you to look into diet. For instance liver is a vitamin powerhouse.
There is no need for any cholesterol in the diet. The body makes all the cholesterol it needs. Our bodies are not well adapted either to dealing with high amounts of saturated fat, which, in excess, tends to increase LDL cholesterol and risk of heart disease. The health benefits of dietary patterns high in wholegrains, fruits, vegetables, legumes, nuts and seeds are attested to across the medical literature.
Yes, that's why so many people are a picture of health these days, because people follow what is "attested to across the medical literature". I have no interest in debating you, I'll just stick to my high fat, high protein, low carb diet, thanks.
I'm not advocating low or high fat, low or high protein, low or high carb. It is possible to develop a healthy dietary pattern with any of these macro nutrient profiles.
This is an interview with "Dr Walter Willett, the most cited nutritional scientist in the world. An absolute powerhouse of knowledge, Dr. Willett has published over 2000 studies and shares key insights in this episode to help you lay the foundations of a healthy diet."
Just the first 5 minutes gives a fantastic overview of the composition of a high quality diet.
Dietary cholesterol doesn't move the needle on blood cholesterol levels as much as people were led to believe. Its relation to heart disease is also not so straight forward. It does however support the body's production of it cholesterol,.the body produces less of it if it is consumed.
The link with saturated fats and heart disease and weight gain are also not so straight forward. It's mostly transfats found in processed foods which are found to be detrimental for health.
After eating all the things you mentioned, nuts, legumes, grains, yada, yada, for most of my life, leading to general malaise (IBS like symptoms) I started eliminating and using meat and animal fats as my main source of sustenance. I highly doubt I will ever significantly reintroduce fruits, vegetables, grains, nuts, seeds, or anything else but animal sourced products.
Hi, everything you write sounds like you're just not getting enough b12. UK guidelines call for every other day injections with neuro symptoms, and some us even need to go daily or twice daily to stop and reverse the nerve damage. 7 years on and i still need 2x a day otherwise i get what you describe.
If i skip more than 1 day (which happened when i had back surgery), i get very wobbly, bump my shoulders into walls, nearly fall backwards off the stairs, feel dizzy/vertigo, and start dropping stuff.
I call the blood fizzing as champagne in my veins! If i would stop injecting, it would turn into pins n needles, then stabbing pain, then burning, then eventually total numbness.
The heat can sometimes increase our need for b12.
I would suggest a minimum of every other day for a few months to at least rule out b12 as a cause.
Don't forget you might need to increase folate for a while since your levels are not exceptionally high, and the increased b12 will use it up.
And of course as others pointed out, get an iron panel tested: serum iron, TIBC, % saturation, and ferritin. Don't take any iron until you test, because too much can be toxic. And Vit D.
Your TSH looks fine but's worth testing FT4 and FT3 once so you have a baseline, plus there is a (rare) type of hypothyroidism where TSH is fine but your Free's will be low.
Thank you so much, that is really helpful. I'll go back to every other day. In fact, I'll do a jab right now! And I recognise some of your symptoms in myself (bumping shoulders on walls, weird effects on stairs).
I've been SI for almost 7 years (GP gave me 5 loading doses and pronounced me cured). Initially did every 6 weeks, moved to weekly. Had a long-standing abscess removed and was able to move back to 6 weekly (which is what neurologist recommended in 2018). Have been finding the pins and needles returns in about a week, definitely in 2 weeks, so was doing weekly. I have always hated taking medication and the GP's disapproval plus lack of a scientific explanationfor needing so much make me reluctant. This isn't the first time people have advised me to SI more often, it is just a block with me... family history.
Sorry to hear that, sounds like a big burden to bear. I too have no scientific explanation and have even done genetic testing, but alas no answers. I'm comforted by the fact that b12 is not toxic, and it brings quality of life. I guess everyone has to come to terms with it in their own way.
An anecdote. On another b12 forum there was a lady who had been doing fine on monthly until one day symptoms just wouldn't subside. Turned out she needed weekly. I've heard of similar stories over the years - suddenly needing more. My own relative recently had this happen. I have no explanation, just to say maybe 1x weekly is no longer sufficient for you, or maybe never was.
We can only hope that in our lifetime, research will reveal why some people need much more.
If you ever want to talk about your 'block' here, i am sure you're not the only one and others might even welcome the chance to talk about it. Just a thought.
Hadn't thought anyone might be interested in why it is hard for me to do what helps me (though I've known many diabetics reluctant to medicate, and they have far scarier, obvious results when they get it wrong). Maybe it's human nature. My brother is epileptic and since he has no recollection of his grand mal seizures, it's hard for him to take the pills everyone tells him he has to take...
It was interesting that once I had the tooth abscess removed, I suddenly needed to inject 1/6 as often. Just how much had that thing been sapping my energy?! I had it for almost 20 years, hidden in my bone, it only showed up on CT scan when pain got unbearable, not visible on xrays.
I'm sure it's human nature, we all have something that we avoid that actually helps us 😂 I have sleep apnea and after 16 years of enthusiastic & careful CPAP use, all of a sudden I've been having problems using it. I *know* I need it and that I sleep a million times better with it, but ... i have a million excuses 😆 And medication is a whole other thing - I have relatives that refuse to become "dependent" on medication that will help them feel better. Only when we hit rock bottom do we tend to see more clear, I think! And in your brother's case, there is no feedback loop to reinforce his behavior, so it makes sense that he has no incentive. So maybe think in terms of how you can incentivize yourself (I will do the same, lol).
One possible incentive: increasing B12 will heal the neuropathy and give you more energy, allowing you to start doing weight-bearing exercises to help the bone loss. And don't forget, B12 is an important part of bone formation! ars.usda.gov/news-events/ne...
Ouch, what an abcess! Do you think maybe you have something similar going on again? Something hidden that is increasing your need for B12?
Also I would hypothesize that if the nerves never got a chance to heal properly at the start, by being declared "cured" after just 5 injections and then reducing after that, perhaps you're still just playing catch-up. As time goes on, the gap gets wider and it gets harder and harder to catch up, if that makes sense.
that all sounds sensible... you asked me to tell you how it goes -- if I'm optimistic, the jab made a difference. by the time i did it i was having trouble feeling parts of my foot, which is unusual. I am in quite a lot of pain but just possibly it is less than it was. I shall try to stay aware (so often I reliase it has got better after a jab but have no sense of how that happened or how long it took). I went for a brisk walk this evening, very tough on my lumbar spine but i think it's good for me.
Did a second jab today - that's 2 in 3 days. It has definitely made a difference. I feel it makes no sense but it is my experience that it helps. Thank you for the support to do it (does the 'reluctance' require permission to do it? My mum was a nurse so we grew up with 'call that an injury, I've seen children with their heads cut off' or words something like that...)
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I lose my balance more often than he thinks I should but I don't fall over, I just have to grab something to stay upright (usually him) but the feeling goes away in a few seconds. It isn't out of the blue, it happens if I move, especially if I move suddenly - I just sort of lose my bearings. 
Is this level of B12 low enough for treatment? 
any suggestions please
Is B12 196 normal?
low b12 - When will this improve?
