Went to doctor due to pins and needles in feet and hands and some fatigue, some headaches and waves of sadness . Suspected it was low Vitamin d or b12 as I had low b12 back in 2021 ( 101) and had to have shot. I had my test results back and B12 deficiency was diagnosed at 188.
I have been given b12 3x a week for 2 weeks and then will be given 1 after 3 months? So far I have had 4 out of the 6 injections but feel worse after a few hours of the effects of the injections wearing off.
1. How long does It take for tingling and leg restless to vanish? The tingling is way worse than it was in the past when levels were low.
2. Should I beg for iron and folate pills, despite being in normal range ( low end)
3. Are there any dangers in taking over the counter supplements?
4. Lastly how long does a PA blood test take to come back as have been waiting almost 10 days now?
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Damacian
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If by iron you mean that your ferritin is 11, that can be interpreted as low even if "within range". My ferritin was 11 and I felt ill again after improvement with EOD B12 for a year. The B12 had used up most of the ferritin and I needed more. In my case I paid privately for a ferritin infusion which has hugely improved my health. I understand from this site that others have use heme iron with good outcomes.
It does seem strange that your very low B12 in 2021 was never investigated further - or treatment continued as Nackapan said. Having a single injection might have worked in bringing up your B12 level then, BUT unless the cause gets found and addressed, what will change ? The deficiency will very likely return. As it did in your case.
Even if the cause was suspected to be dietary, you'd hope that this would have been treated initially by a loading dose of six injections (which you are now finally getting) and your diet discussed with you. Also at the least some close monitoring to ensure no return of B12 deficiency. Even where diet is suspected, pernicious anaemia (PA) could be the true or primary cause.
By PA blood test , I'm assuming you mean the intrinsic factor antibody (IFab) test ? Be aware that only 40-60% of those with PA will test positive for this. For example, Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three tests before getting a positive result. A single negative result cannot safely rule out a PA diagnosis for that reason. Worth ensuring that this is understood by your GP.
I had B12 deficiency, and low-range folate and ferritin. Because my hair was still falling out and gums bleeding after B12 injections started, I was given 3 months' supplements of both. It took a couple of years for me to get folate and ferritin back into healthy figures and stabilised - the GP monitored both. I now have vitamin D on the NHS alongside Raloxifene daily, as I was found to have osteoporosis of the spine.
Thyroid should also be checked for signs of struggle. Better still, have a test that includes autoimmune thyroid condition indicators anti-TPO and anti-TG - good to rule out. This will require a private test, I think, but can be a fairly reasonable cost if done as a postal sample with online lab results. This was the only private test I've had to have as NHS don't do more than TSH and FT4 and because two of my sisters have Grave's disease.
If PA does turn out to be the cause of your B12 deficiency, best to rule out any other autoimmune conditions, as they seem to love company ! Worth asking close family if there is any history of this : vitiligo, Grave's/Hashimoto's, psoriasis etc - there are quite a few others. Any with diagnosed PA at all ?
1. It is likely to take months to improve. In essence the nerve myelin sheaths have to regrow. The damage is a result of you not having been given on going b12 shots. I am sorry to say you have been poorly treated.
2. I wouldn't beg, but I would simply buy a methyl folate supplement for myself. Others could advise on iron supplements. Essentially take control as your health as it is too important to be unnecessarily in the hands of ...
3. Well it depends. I certainly take a range of supplements such as magnesium, vitamin D and K, taurine, glycine .... and am fairly certain they have helped with my health. However it is worth researching each supplement in depth. Also supplements come in different forms, for example magnesium comes combined with many different compounds, I take it as magnesium threonate because it helps me sleep and I think it reduces my susceptibility to migraine, You can also take a very small amount of any new supplement for a couple of days to check that you don’t have any weird reaction to it.
4. I've read that it is a couple of weeks but I don't really know and I guess it depends how inefficient the information chain is.
I had a course of injections and my b12 was checked and came in at around 250 and then tested a year later and was 215 and year agates that and was around 230. It’s only this year that it was dipped again.
So they were checking and have always been on normal low side.
Is it true that iron and ferritin are low if you runner daily??
Testing of b12 in serum is explicitly recommended against post injections. Injections are recommended for life unless the cause is identified and reversible eg diet.
Retesting is recommended against because the levels should be Sky high, eg 2000, and such high levels invite the erroneous conclusion that treatment can be stopped. Your GP retested and despite low serum levels did not continue treatment.
A more succinct guidline can be found by googling bmj excellence b12 guidline.
Your GP is far from being alone in their poor understanding of b12 deficiency and please accept my apologies for being critical of your GP's actions but it is difficult to conclude that they conform with good practice from what you have said.
I had low b12 so went on course of injections - 6 in 2 weeks and then once 3 months later.
It was then retested in a year. And the a year later
Are you saying that once you have test and evidence low values you should always continue with injections until the root cause has been established??
I had the IF test before b12 injections. I should add that I had to insist on the injections as the Gp said it’s not that low and could be dietary driven but my symptoms justified it in fact I was concerned that he was going to reverse a previous diagnosis made by another doctor
If you have pernicious anemia, you should continue with life long B12 injections. Sometimes, it is hard to get a definitive diagnosis of PA. But if you had no dietary reason to be low, and the B12 injections improved your symptoms, you probably have it.
Hi, I too have just started B12D jabs and today received jab 3 from 6. Luckily so far no negative symptoms and I think I do feel a little better but could this be just the fact that treatment has started? I have only ever tested between 140-170 range. In regards to IFA blood test, I had mine Thursday pm and results were back today on the NHS app. I read it was important to get the IFA test BEFORE B12 jabs started so as not to skew results. My B12D concern was increased heart rate which it's too soon to comment on and I have a nasty cold/cough so unable to make a decision. Sorry to hijack your post but if anyone else experienced heart rate issues with B12D, how long after shots was an improvement noticed. ? Stick with it Damacian am sure that it will improve. Since joining PA site I have learnt there is a lot of knowledge and experience you can call on, but to take control of your own situation and treatment plan. I researched fully prior to going to GP to ensure we both stayed on an agreed treatment plan and timescale and to date this has delivered quick treatment (so far!)
I have not noticed heart rate changes due to B12. But after COVID, my heart was beating about 20 beats per minute higher than usual when I was playing ice hockey. After a few months, it went back to normal. It was hard to play when it was that high, and it was not going down like it should have when I was on the bench.
Yes. I think it is generally recommended that b12 deficiency is treated for the rest of your life unless an underlying reason is found which can and is reversed. However, many if not most cases cannot be reversed. Additionally the risks in not treating b12 deficiency are considerable and potentially irreversible and it would therefore seem prudent to treat b12 deficiency with injections unless there is a high degree of certainty that the deficiency is resolved.
The IF test is said to be around 50% accurate in identifying Pernicious Anaemia/B12 deficiency. So it can confirm a diagnosis but cannot rule out a diagnosis. Others on this forum can explain this much better than I can.
I wish you well and apologise again for being critical of your GP who I don’t know and therefore my comments were hasty and ill considered.
You were correct t I have been diagnosed with PA ! The doctor was not concerned and said that my cbc profile was fine. I am really scared. I have been advised that I need to finish loading course this week and then start the 3 monthly injections in 3 months.
1. Does this mean any numbness or tingling will never go away?
2. How regularly will my iron and folate need to be tested? I am on the low end of normal for both….
I understand that you feel scared but read this forum daily, you can sign up for a daily email of postings. This will give you a really good and practical understanding of PA and how the wonderful people here successfully manage their diagnosis. Within a few months you will know more than most GP s and will feel confident that you can manage this. If your lucky your GP will be helpful but either way you will learn for yourself.
1. There is a good chance your tingling will reduce but it will take time.
2. You could start methyl folate supplements yourself. I don't know when you would want to retest. Perhaps others could comment? I am ignorant about iron but others can advise.
3. When you read this forum you'll see that many of us inject more frequently than every three months and you may wish to consider if could be appropriate for yourself. But you will read this and how we achieve it.
4. There are co factors which many believe help with b12 recovery. Folate is one and the forum will introduce you to them.
Apologies for posting again but I just wanted to add that I am obviously not medically qualified and my posts are suggestions of things you might consider and are not recommendations.
It is often suggested that in the presence of b12 and folate deficiencies the b12 treatment is started first. I think there is some evidence that folate can exacerbate neurological symptoms of b12 deficiency if the b12 remains untreated. You can see references to this if you Google treating folate and b12 deficiency, or similar.
I don't know why they would have "increased" without treatment. But they seem to have remained consistently in the low 200s and any variation could be random variability in the lab results or the serum levels themselves.
Mine was 190, That's severely low. It takes 4 years to deplete the stores and end up that low. Thus it will take years of daily injections to get better. longer if they are spaced out.
I was that low and was bed ridden. Forgetful. All sorts of back pain. tinling, numbness. Poor coordination.
The only solution was to inject b12 DAILY. After 2 years I was out climbing mountains. I'll never be the same but I am doing great. There is hope!!
If left untreated the symptoms can become Permanent.
This, it's best to get started with injections so you can heal. Don't let anyone talk you into spacing injections.
As long as your liver and kidney function tests came out normal, then you cannot overdose on b12. The only time b12 is toxic is if you have an underlying, unrelated, already existing problem with the kidneys or liver but if those tests were done and they are normal then you are good. B12 won't cause a liver of kidney issue.
The healing process will be slow as in 2 years or more for me.
I highly suggest requesting frequent injections. If they won't give it to you, have them teach you how to self inject so you don't have to keep coming in for the subsequent injections.
Any time I tried to space out the injections my symptoms returned and I would have to start over again
Then don't tell them just keep doing their regiment and buy your own supplies so you can do frequent injections. It's what most of us do because b12 deficiency is so misunderstood.
This article explains all the misconceptions as well as facts.
ncbi.nlm.nih.gov/pmc/articl...
The pernicious anemia society has great info as well!
pernicious-anaemia-society.org
Ask any questions on this forum.
Many here have thyroid and iron deficiency as well. Also there are iron deficiency groups on healthunlocked that are good as well.
Cheers.
Be good to yourself. It takes a lot of patience and self love.
thanks. Have finished the loading course and been told the next booster will be in 2/3 months time. Also been given daily 5mg Folic acid prescription for 2 months even though I am technically not deficient (3.6).
Are you really saying that I should be having daily b12???? For a level of 188? I’ve had a level as low as 81 before and felt ok. My full blood count is fine and technically not anaemic so they say they caught it just in time….
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