So a few years ago I had a b12/folate deficiency. I had easy bruising, unexplained weight loss, funny sensations just to make a few. In the end I was really unwell and had Macrocytosis so I was started on loading doses of b12 (followed by injections every 3 months and folic acid.
My levels went up to 1800 and treatment was stopped.
a few years on and my levels have gradually gone down again. My last blood test which was last September showed my b12 to be 183 and my folate 2.2. So I was given b12 tabs and folic acid.
I’ve now started to feel unwell again and I had a blood test Monday just gone so waiting for the results.
I had a PA blood test a few years ago (2017) but it was negative. I had an endoscopy mild gastritis (2017). My great nan had PA and was given treatment for life.
I’m wondering if my levels come back low. Where do I go from here?. Do I ask for injections? And just need some advice really.
Thanks
Emmy.
Written by
Emmy1991
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Welcome to the forum. You'll find lots of help and support here.
I'm not medically trained but with many symptoms suggestive of B12 deficiency and PA in the family, I don't think your injections should have been stopped.
A negative result in Intrinsic Factor Antibody test does not rule out PA. It's possible to have Antibody Negative PA.
Take a few days to look through links below so it's not so overwhelming and please bear in mind that some links may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
It's vital to get adequate treatment. Inadequate treatment may increase the risk of developing permanent neurological symptoms. In severe cases the spinal cord may be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
I urge UK forum members to find out what's in the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England and Health Board in Wales/Scotland.
If can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some local B12 deficiency guidelines in UK are not helpful. See blog post below.
Some UK forum members turn to treating themselves when NHS treatment is not enough.
Some get extra injections from private GPs or beauty salons. Some try high dose oral tablets but these don't work for some people and some as a last resort try self injection (SI).
There is more info I could pass on. Just let me know if you want more.
Good luck and I'm hoping you get the treatment and support you need.
If so, then oral supplements may help and an intitial set of b12 injections may help get you back up to speed then oral supplements to maintain.
however, if you do eat meat (and it must be daily), then this means you do not absorb b12 and have a long term issue that will need to be treated with injections, most likely for life.
Thus injections shouldn't be stopped.
find a doc to get you injections or get your own supplies and start self injecting.
I was 190 and felt horrible. bed ridden from the fatigue, brain fog, high heart rate, back pain, numbness, and all the other symptoms.
It took 2.5 years of daily (with cyanocobalomine or every other day with hydroxocobalomine) to get 80% back to normal. I now climb mountains (metaphorically and literally).
Don't mess around. Don't let any physician tell you that you don't need B12. Your tests have revealed you have a definite deficiency. Get doing injections and in the mean time, work your way through Sleepy Bunnies links! they are fantastic. The number of links may be ovewhelming, but just think about what you want to know and the order in which you want to know them and bite off each one in pieces at your own pace.
If left untreated the symptoms can be permanent. I have yet to 100% clear up the loss of coordination and the brain fog; although I have come a long way.
AND REMEMBER, this is the best forum you can be in for community support for b12. So give yourself credit for finding this forum. Don't be afraid to ask questions or just vent!
To add to my previous reply, trust me, most of us if not all here went through the same exact thing you did where we were told we didn't need injections, then ended up worse off.
That's why we say, don't listen to the docs that don't understand B12. There are plenty of medical journals coupled with the clinical experience of all the b12 deficiency patients out there... both of which get completely ignored by the medical community. The PAS (Pernicious Anemia Society) works hard to bring awareness but it's slow due to the lack of recognition of the gravity of this deficiency. Ultimately it comes down to the fact that B12 is responsible for cell generation. our bodies regenerate cells (brain cells, nerve cells etc) every 120 days. This process stops w/o b12. It is so incredible HOW this simple fact is ignored. It's a deadly deficiency if left untreated! It's just as bad as cancer, yet has a simple fix of b12 injections!
Take treatment into your own hands. That's what a lot of us here have done and it has worked. That being said, I still work with a doc who does listen. I have him get various tests when needed. I keep him updated on my progress and try and encourage him to recognize and help others with this issue. I should do more, but my career keeps me so incredibly busy these days. If anything, I bring awareness to one doc and help others that he sees.
thank you so much I really appreciate all the information and support and no I’m not a vegetarian but have looked at my diet and do need to increase my meat intake. I eat a lot of greens as I am quite healthy.
I had all my blood tests back . My iron serum was slightly low 7.7 (lab range 9.0 to 30). Ferritin is 25 (lab range 15 to 204). So my iron levels are low? But my fbc was fine?
My vit d is slightly low aswell but other than that my thyroid, kidney, liver, c reactive protein test was all normal.
The doc did not send off for my b12/folate which I’m frustrated and annoyed about so I have decided to pay for a Superdrug premium b12 test as I had to wait 2 weeks just to get a blood test from my docs last time, I feel so unwell right now i can’t function
Dizziness, fatigue, pins and needles sensation on my scalp, brain fog, loss of appetite.
Create a summary page of the doc and highlight the key points that justify frequent injections, otherwise they won't read it.
Get them to teach you how to self inject. If they won't, find someone who will.
It took 2 years of daily injections and I still do them. But I'm living life well now.
Now the vit D:
That can make you very tired as well.
Also, take 10,000 units of vitamin d a day to help get your D up for 2 months then get tested unless they told you a diff dose. You can overdose on vit D but that level for that long should be ok. Unlike b12, vit D can be tested at any time. It usually takes 2-3 months to build the level up.
I’m not sure. I have had the enlarged blood cells before a few years ago.
I had my fbc which was fine
urea & electrolytes - all fine
serum c protein - all fine
liver function - all fine
iron transferrin - low
serum ferritin - all fine
serum TSH - all fine
Vit d. - low
I have now booked in my b12/folate that they missed out but I’m having to wait 2 weeks just to get the blood test done and I feel so poorly I feel like my doctors are not taking me seriously at all. They seem to fob off b12. In the meantime I’m looking privately just to get a blood test done. I also have asked for a PA one. I had one a few years ago but it was negative but I know they are not 100% accurate?
Have you managed to find the local B12 deficiency guidelines for your area yet?
Your GP is likely to refer to these for guidance on treatment and diagnosis.
I think people on the forum should protect their privacy but if you don't mind people knowing which area of the country you are in, someone might be able to help you find the local B12 deficiency guidelines for your area.
Threads from HU can sometimes appear on the NHS website.
If you want to change the setting of your thread to a more private setting....
1) Go to your original post. Click More then click Edit.
2) Scroll down page to Share. Click Community Only then Post.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and no I’m not a vegetarian but have looked at my diet and do need to increase my meat intake. I eat a lot of greens as I am quite healthy. 
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