I'm a 43 year old male and was hoping for advice on whether I'm barking up the wrong tree being on here.
for the last 10 years or so i've been in and out to GP's due to experiencing various symptoms that could potentially be attributed to low B12.
In 2015 i started to experience tingling in my limbs and numbness in in my leg and side of my face. After the GP assured me it wasn't a stroke i was told to come back if things didn't improve. I obviously went back and bloods were taken. I've gone back through my records and found my B12 was 213ng/L (191-663) and folate 6.9 (4.6-18.7). I had an MRI which was clear. After the MRI result i felt that what was happening was serious and pretty much lived with it and got used to for 5/6 years.
fast forward to 2022 and i'm having to some gastro problems(these still persist on and off). With a new GP a blood test is taken, my B12 this time was 148ng/L (187-883) and folate 4.8 (3.8-20.0). My Intrinsic Factor was negative. This was the first time i'd heard of B12. My GP prescribed me to have 3 B12 injections per week for 2 weeks but it was never explained to me what B12 was about and how it affects the body. i also had a colonoscopy which was clear. Very soon after this i relocated so to a new GP practice.
At the end of the year my symptoms started to worsen with increased numbness in my leg, pains in my feet and also now my speech is becoming a problem. At times trying to string a sentence together in certain situations is difficult and i'm unable to find words mid sentence and just go blank. I mention to my GP that earlier in the year i had to take B12 injections as it was deficient so a follow up blood test is taken and is now B12 257ng/L (197-771) and folate 2.6 (3.3-19.3). I was told to take folic acid tablets for 4 months but B12 is now within range and they were happy with that. Told to come back if symptoms worsen.
2024 i went back this summer and went through it all again B12 250ng/L (197-771) and folate 3.5(3.3-19.3). folate improved to back within range and so is B12. Same outcome, told to come back if it gets worse.
Sorry for what looks like my complete medical history, but the more i read about B12 the more i believe this could be the problem. I know i'm within the ranges most of the time, but i'd say it's pretty borderline when i am. Would you say i'm right in my thinking or just accept the GP's thinking on B12 and i need to drop it?
Many Thanks.
Written by
rich_hop
To view profiles and participate in discussions please or .
Don't drop it. You need injections every other day until you have no symptoms. Then figure out how often you need them to keep all the symptoms at bay. I get tingly toes after 3 weeks so I get my husband to give me an injection once per week. You need B12 for life. If your doctor is not cooperative, you may have to self-inject like many people on this forum. If you live in the UK, there is info on the forum about sourcing B12 from Germany. The intrinsic factor test when positive shows you have PA. Unfortunately, the test has a very high false negative rate. If you go back on B12 every other day injections and improve, just assume you have PA and get injections for life. The guidelines do not advise having B12 tests once you start supplementing. Very best wishes! It's important to get enough B12 to avoid permanent damage.
Most GPs don’t understand B12 - it’s vital for the functioning of every cell in your body - so no wonder we all feel rubbish when we go low. B12 serum test measures what’s in your blood and yours plus folate trends to low and isn’t a good indicator of deficiency or surplus in cells…Personally I gave up with trying to persuade my GP and I self inject EOD. Never felt better! It’s much easier than fighting ignorance! Good luck
All your test results show you are bumping along the bottom of the 'OK' range. Good normal is above 550 as I understand it. You responded positively to injections.
You can fight the Doctors and push for treatment, which with neuropathy should be every other day for as long as it takes, or just get your own supplies and DIY, because if you are anything like I was you have no fight left.
Yes, my symptoms are/were like yours. Numbness, tingling, gastro and loss of words. I am now injecting every other day. It controls all the symptoms except loss of words which is better but not back to normal. You are on the right path.
Good suggestions so far. You have nothing to lose and all to gain by exploring B12 first. It’s water soluable so you won’t overdose as excess is peed out.
Keep an eye on good Co factors and vitamins such as folate, iron, vitamin D and potassium as these need to be optimal for B12 supplementation to be effective.
Best of luck and don’t be afraid to come and get more help and support if you need it.
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.