40 days of B12 injections and I feel ... - Pernicious Anaemi...

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40 days of B12 injections and I feel the same :(

huggabugga profile image
huggabugga

Hi, I gave gotten 40 B12 injections at this point and yet I feel no different. Everyone says be patient but how long do I have to wait to feel better??

36 Replies
clivealive profile image
clivealiveForum Support

How long is a piece of string huggabugga and that's not meant to be flippant.

Have none of your symptoms improved and have any appeared to get worse?

Have any of of your other blood levels been checked? e.g. Iron or Folate?

There is no short answer as we are all different and a lot will depend on how long you were B12 deficient and how much damage the deficiency caused.

I am not a medically trained person but have had P.A. (just one of the many causes of B12 deficiency) for 49 years and I still struggle in the run up to my next injection.

Hopefully someone with more knowledge will come along with a better answer to your question but in the meantime I wish you well and goodnight from the U.K.

How long is a piece of string? Are you saying it's different for everyone?

Gambit62 profile image
Gambit62Administrator in reply to huggabugga

yes, everyone is different.Are you injecting as the result of a diagnosed B12 absorption problem?

Have you noticed any differences at all?

If you haven'y noticed any differences at all that would suggest that either B12 deficiency isn't the problem or that something else is going on

huggabugga profile image
huggabugga in reply to Gambit62

I noticed differences for the first week. After that I stopped feeling any changes.

My Iron and Folate levels are both in the normal ranges.

I haven't tested for Pernicious Anemia since that test is notoriously inaccurate, but my Grandpa has it and I have most of the symptoms associated with P.A.

clivealive profile image
clivealiveForum Support in reply to huggabugga

Sadly as Gambit62 says - yes - and there a multitude of different causes of B12 deficiency

40 injections seems excessive. I always struggle for several weeks after my B12 without feeling any improvement. Perhaps there are other health issues you need to get checked out.

Are you having every other day injections? And how long have you been having them?I felt worse than ever for at least 3 months, that’s how long the red blood cells take to be renewed. After that I saw very slow improvement but I was extremely low in b12 and had every symptom, recovery has been very slowly taking place since I started my injections over 2 years ago now.

huggabugga profile image
huggabugga in reply to Showgem

I have been doing daily injections. I know that's a lot, but I'd rather risk overdoing it than underdoing it.

I got a Complete Blood Count and my red blood cell level is normal.

Are you saying that after two years of injections every other day that you are not yet back to normal? I didn't realize that the recovery could take that long. I really hope I don't have to wait two years :(

Showgem profile image
Showgem in reply to huggabugga

My recovery has been gradual. I think a lot of it depends on what neurological symptoms you have and how long you’ve had them for. What symptoms do you have and what was your b12 level at the start of treatment?

huggabugga profile image
huggabugga in reply to Showgem

I was taking B12 supplements for a couple of years and so now my B12 level is super high. But obviously my body might not be absorbing that B12. In 2018 my B12 level was 265 with a range of 211 to 911. I started to feel extreme fatigue one year later.

I have had depression, difficulty concentrating, and chronic neck pain for 8 years (since I started high school) and then in 2019 it suddenly got waaaay worse and I couldn't even sit up to do schoolwork.

Showgem profile image
Showgem in reply to huggabugga

As others have said your ongoing symptoms could have another cause so you need to speak to your GP for further testing.I am very much better than I was 2 years ago but still tire easily. My neurological symptoms have never completely gone, My GP and neurologist think the remaining nerve damage is now permanent but I continue to self inject once or twice a week as I’ve seen from others stories on here that recovery is still possible.

I felt more symptomatic fir the first few months. More headaches, tinnitus ,more fatigue ,acne spots. Really shook uo my nervous system. Fatigue actually turned to exhaustion. Stuck to the spot. Buf a reaction. That's why I've mentioned what happened as didn't feel positive at the start. My daughter didn't get this 'reaction' Her levels were very low and had megobalastic aneamia.

So as has been said by others we are different and everything needs to be checked and it does take time. Perhais you recognised dkne of the 'responses' I got??

Her folate was low and once b12 levels raised she treated that then saw results.

Vit d ,iron ferritin ,folate all needs checking

What we're all your levels at the start?

Thyroid might need testing

No reaction at all does sound odd .

Let us know how you get on.

We learn from each other.

Hope you get some answers soon.

huggabugga profile image
huggabugga in reply to Nackapan

I have checked my Vitamin D, Iron, and Ferritin and I still don't feel any better. I need to check my Folate though.

I have hypothyroidism, and I thought that was the source of my fatigue for the last two years. But I have tried every thyroid medication with no change in symptoms.

Yeah I felt better on B12 for the first week, and after that nothing. I don't know if I should investigate other causes of fatigue now

Nackapan profile image
Nackapan in reply to huggabugga

Oh good yoh felt better initially

I still have severe fatigue with regular injections and other symptoms

But gradually gradually able tk di some things. Aiming tk be able to function better eventually . Always good to rule other things out.

Definitely get your folate checked. Hopefully things will improve

Marz profile image
Marz in reply to huggabugga

As you are Hypo are you sure you are optimally treated ? Is your TSH around 2 or under ? Are FT4 and FT3 near the top of the range ? Do you have anti-bodies - Hashimotos ?

I have Hashi's which can affect absorption badly.

How much Levo do you take ? There is an excellent forum - Thyroid UK - here on HU. Many of us are on both !

huggabugga profile image
huggabugga in reply to Marz

Hi there! Yes, I am hypo and I have Hashimoto's disease. I have TPA antibodies. I haven't tested my FT3 or FT4 recently, but I definitely should. I am taking a bit of Cytomel (T3) everyday, but I have tried every kind of thyroid medication and never felt any difference. I started looking into other autoimmune diseases that could be causing my fatigue, and that's how I found this forum :)I have actually heard of the Thyroid UK forum! You guys offered me great advice in the past😊

Marz profile image
Marz in reply to huggabugga

You mention Iron in range - was it a Full Iron Profile ? When Hypo it is suggested that Ferritin is mid-range - is it ? It's rarely about trying different meds for thyroid - but getting the right amount. Taking T3 will lower your TSH and possibly the FT4. Do you have any results to share ?

Leave 8 hours after taking T3 before testing and test early and fasting produces the best results.

Having Hashimotos can trash absorption of nutrients so having optimal levels of B12 - Folate - Ferritin - VitD is key to recovery and how you convert the inactive T4 into the Active T3.

Just past three years now, started injections 17 April 2018. Mostly feeling better, but still have bad days, though when I think back to how crippled my body was, it makes me think that the injections have worked wonders. I am on an injection every four days now. It was every other day for over a year. After 40 days you might begin to feel improvement in some things, but only just. I wish you well on your recovery.

huggabugga profile image
huggabugga in reply to jointpain

Thank you. Just curious, how long was it before you felt you were mostly back to normal? A year?

jointpain profile image
jointpain in reply to huggabugga

After around a year, and a half I was able to eat dairy products, and a great deal of my joint pain had gone. Note:- I am also celiac which has never been officially diagnosed, due to incompetent GPs

Your red blood cells need to die and be replaced. That can take anywhere between 90 to 120 days. Having enough b12 in your system means your body will produce healthy red blood cells.

Also for consideration is folate, iron, magnesium, vitamin d, and niacin, which you might also be deficient in.

But that's why it takes time.

huggabugga profile image
huggabugga in reply to Sammyo23

But I got a Complete Blood Count and my red blood cell level is normal. Also my MCV (which is the size of the red blood cells) is normal too. So do my red blood cells still need to be replaced?

Nackapan profile image
Nackapan in reply to huggabugga

My bloods are all good now. Healing isn't in a linear line.

Im still hoping for improvements over 2 years in.

It can happen.

Try and stay positive whilst ruling things out and keeping your b12 up snd other nutrients sorted

Hidden profile image
Hidden

When I first stared spraying with b12 I felt better within the week but after a while I started feeling bad and similarly to when I was low. I stopped taking the b 12 and felt better so I assume I was overdoing it. I had read that you couldn't overdo it and so I was taking loads of sprays of it...I think I did overdo it though. I don't know. Why are they giving you so many injections? Have your levels not risen to within normal? I had similar with iron the sensations of taking the high dose tablets in my legs and arms went away and then got worse so I stopped the iron tablets and just ate better iron foods. and that didn't cause any side effects.. But I think the overload of the high iron was not making me feel well. I've also taken high dose b vitamins that gave me horrible stabbing pains and yet people say you can't take too much...at first I thought maybe its a healing effect but it was very unpleasant so I stopped the b vitamins. I then read that b vitamins on their own can cause issues. So a complex is needed. I don't know if b12 is the same ...but maybe it needs a balance of other b vitimins ...if your level hasn't increased since 40 injections that might be something other than an absorption issue. Maybe your body can't retain it or something?

Nackapan profile image
Nackapan in reply to Hidden

Some need constant high levels of b12 in their bloodstream to be able to utilises it at cell level. As I understand it once on injections you need higher levels

Even if you csn store some in your liver if you can't absorb it you csnt utilises it from stores either

I sometimes feel a steady flow of b12 would be better like an infusion but that's not available.

Yes iron is different. It can make you ill if supplemented too much.

B12 you wee ouf surplus amounts .

If dietary b12 deficient then yes once stores replenished cxn be used by the body.

My friend was vegan by proxy . Basically ate out of a veg box delivered .

Detox or something.

Got pains saw Gp who dud a b12 test promptly!!!

3 injections then oral b12 . Shes fine .

Changed hef diet and is well

I was very impressed with her GP !

Took me to collapse tk get my b12 done 2 weeks later !

Hidden profile image
Hidden in reply to Nackapan

Yeah I don't eat a lot of meat so I'd say that's why rather than anything absorb related. Sorry to hear you collapsed!! Its hard to know what effects are what and at first I though oh my body is probably busy making some blood it needs and that's why it hurts but then when it went on for a while I was getting tickling sensations which was what made me take it in the first place to get rid of tickling and tinnitus. I might give it another try but only do a small regular amount instead and see how that feels. I jad tinnitus for ages and itchy ears and then tickling and did feint properly once in a hot shower. But they just gave me antibiotics for ear infection loads of times for acute dose which egen if it was infection was chronic at that stage... And then they figured i had anxiety which I've had before and knew I was mainly on top of so didn't need antidepressants ..then they gave me ashthma medication and allergic rhinitus meds which I also didn't take as I had allergic rhinitus as a kid and I definitely haven't got it nor asthma. All very random what they did for the same issue. Different doctors at the same practice. I still have ringing in my ears which I believe is really common for b12 ...I'll start off small and see if i find the right amount this time. thanks for your help.

Nackapan profile image
Nackapan in reply to Hidden

Hope you get some good results.Yes trial and error it seems alot of thd time what is prescribed!

Hidden profile image
Hidden in reply to Nackapan

Absolutely. I had mad tickling like cobwebs and ringing in my ears for years. the b12 got rid of the tickling thank god it was driving me mad but then I started to feel unwell taking it but I had other issues going on too so I didn't know what was causing it and dropped everything for a while. Found magnesium helped and so now I can do the b12 again and see if it helps the ringing now that the magnesium is sorted out. I was taking d without k as well which might have deleted my magnesium. Its all a complicated balancing act. And without proper support from healthcare its twice as hard. If I had access to my own laboratory It would make things a lot easier. Might have to push one of my children into pathology and the other into construction and household repairs. Lol!

huggabugga profile image
huggabugga in reply to Nackapan

Being vegan does not cause pernicious anemia. Your diet doesn't matter if you are not absorbing B12 regardless.

Nackapan profile image
Nackapan in reply to huggabugga

I know!

Being vegan you just need to take b12 supplements . Very hard to get enough b12 otherwise.

It's a known risk factor for dietary deficiencies

Yes an absorbtion problem is an absorption problem.

It happens gradually.

Yes you can get PA whatever your diet as its an autoimmune condition

Hidden profile image
Hidden in reply to huggabugga

It can cause b12 deficiency though. I use an app to see how much of vitamins etc I am getting innmy diet...I eat meat but often don't get enough of various things. especially iron and vitimin c. And b12. So it all adds up. My issue was certainly from lack in my diet rather than a digestive absoprtion issue. I can't absorb what I don't eat

In another post you said - "I was taking B12 supplements for a couple of years and so now my B12 level is super high. But obviously my body might not be absorbing that B12. "

If your B12 level was 'super high' then it means that it is being absorbed. So you've had super-high levels of B12 for many years. If there is absolutely no improvement over years of super high levels of B12 and 40 days of daily injections then there are two possible reasons.

1. Your problems aren't caused by a B12 deficiency.

Or

2. You have a functional deficiency.

You really need to determine if it's option 1 or 2.

Option 2, a functional deficiency is possible, but rare. It means that there is a problem getting the B12 from the blood to the right places in the cells. There are two tests that are helpful.

Methylmalonic acid and homocysteine are two chemicals used up in reactions mediated by B12. If there is a problem getting B12 into the places where those reactions happen then the levels of one, or both, of them will be increased. So try and get tests for blood levels of both of those.

If both MMA and hCys are normal then it's very, very likely that your problem isn't low B12.

A functional deficiency is not rare. Plenty of members on this forum are refused treatment or misdiagnosed because their B12 levels are in the normal range. That is what leads many of us here.

I suggest you reread Martyn Hooper's What You Need To Know About Pernicious Anemia. He explains that both MMA and homocysteine are not reliable indicators of a B12 deficiency. It is possible to have both in the normal range while having absorption issues.

fbirder profile image
fbirder in reply to huggabugga

A functional deficiency is rare.

What you describe is people who fall in the bottom of the 'normal' range but are still deficient as I described here - healthunlocked.com/pasoc/po....

A functional deficiency is when your have very high levels of B12 in your blood but still have symptoms and high levels of MMA and/or hCys.

Hidden profile image
Hidden in reply to huggabugga

Do you mean cellular absorption issues?

In addition to what people have suggested, to expand on what to test with iron, it isn't just iron but the transport and storage mechanisms for iron that need to be tested.

have these things tested here:

msdmanuals.com/-/media/Manu...

Testing iron

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