This forum seems such a helpful community, I have finally plucked up courage to post. I have some questions which I would be really grateful if someone might be able to help me with. My (22 year old) son was informed he had B12 deficiency around a year ago. He had been suffering with anxiety and fatigue for a long time . After his 2nd loading dose he had a problem with needing the loo frequently, we thought it would be a urine infection but doc tested his urine and all clear. He has since had a bladder scan and has been to see a urologist who without any further tests, said he has an overactive bladder. He was prescribed tablets which didn’t work, he has been offered a different tablet which he is going to try. Is there any way this could be linked to his B12 deficiency, or just a coincidence that it appeared with the injections. His anxiety and tiredness have improved.
At diagnosis (Feb 19) serum B12 was 112 ng/L (120 -900)
After 6 loading doses in mid March
Blood test in mid May was 197ng/L (120 – 900)
first 3 monthly Injection in June
Blood test in September 161 ng/L (120 – 900)
Injection later in September
He wasn’t allowed to have another blood test but had another injection in December and is due another in March.
He was tested for intrinsic factor antibodies and was told it was negative so he doesn’t have PA, his folate was also tested and was low, he is taking folic acid tablets for this. Thankfully they are still offering him the B12 injections.
Sorry if I have rambled a bit, my questions therefore:
Are there any other tests he should be asking for?
How do we know if the B12 is working as the serum figures seemed to be coming down again. We were under the impression that reading should be very high now he is having injections?
Could the bladder issues be related?
Many thanks
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papaya259
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Straight after I have an injection I get this. I’m literally nearly wetting myself before I get sat on the loo. It lasts days after I’ve had an injection but I don’t always get it. I was only just thinking about whether there was a link the last few days as I’ve had it too,. It is a total pain as your like a 3 yr old rushing for the loo (for me it gets worse as soon as I actually see the toilet too). Sorry I can’t offer any help, but I’d still rather put up with that and get my b12 injections.
Wow same thing happens to me & I always say it’s weird because I can be fine one minute but as soon as I see toilet I can’t get onto it quick enough. I’ve never thought it could be related to b12 injections. This never used to happen to me so good chance it could be down to starting b12 injections. I will monitor this to see if it happens mainly after injections
I would be very concerned with a B12 level that low. What are his symptoms?
I would print them off. Date it and get him to tick which symptoms relate to him and score the severity on a scale of 1-10.
If he has any neurological symptoms, he should be receiving injections every other day until the symptoms go or stop improving.
Then on a weekly basis, he should review his symptom list to see what symptoms are either improving, remaining static or getting worse , and keep a record. Then he has something to show the doctor.
Did his GP also check his ferritin and vit D? Also worth checking his TSH and Free T4 and ideally his Free T3 as thyroid issues can also cause anxiety.
Did he get a print out of his initial blood test results?
I'm sure you'll get lots of other good advice from the folks on this site.
Thank you for your reply he has had his vit d checked recently, it is low I think (38, I haven't got the range to hand) he takes a basic vit d tablet. I think his thyroid was tested , his blood sugar was ok.
Thank you for the link I will get him to go through the list as you suggest.
He has access online to previous blood tests so I will also get him to check what else was tested for.
I would print off all his test results. That way you can monitor how things are going. Is he vegetarian/ vegan ? Just wondering, as so many of his vitamin levels are low.
Search on here for advice on Vit d.
In range Thyroid levels does not exclude issues. Again you can look on the thyroid advice pages on here to check . But low vitamins will also affect the ability of the thyroid to function optimally.
My daughter was about the same age when she got really ill with extremely low B12 so I feel for you. Great that you are being proactive and asking questions.
We spent a long time looking through all the blood tests which has helped.
My son does have a diet including meat, initially he was told to look on the internet to see what he should be eating and was surprised to see that the list was more or less everything he does eat.
His latest vit D test is 37 nm/L (50-250) but has been as low as 14 (2015), 28 (2016), 48 (2017) is the highest it has been. he has taken vit D tablets on and off over the years. So that might be bringing him down still.
Folate September 2019 was 2.4 ng/ml (2.5 - 9,999) but was recently up to 16.1 he has been taking folic acid since September.
Only TSH was tested but all are in range although there is a bit of a downward trend not sure if that is significant, I will have a look at the Thyroid advice pages as you suggest.
(2014) 2.27 miu/L (0.5 - 4.3)
(2015) 2.12
(2017) 1.99
(2019) 1.29
So sorry to hear your daughter was so ill with B12 deficiency and thanks for the support.
Only TSH was tested but all are in range although there is a bit of a downward trend not sure if that is significant, I will have a look at the Thyroid advice pages as you suggest.
(2014) 2.27 miu/L (0.5 - 4.3)
(2015) 2.12
(2017) 1.99
(2019) 1.29
The most common TSH in a population of people with no known thyroid disease is roughly 1.25, so your son's thyroid might be actually more healthy with the extra B12 and folate. When TSH goes high in range or over the range that suggests that he may be hypothyroid or becoming hypothyroid i.e. developing an underactive thyroid.
Below range TSH suggests that someone might be becoming hyperthyroid i.e. overactive.
I've actually simplified the significance of TSH but at least it gives you a rough idea of what to look out for. There is far more to thyroid disease than testing TSH (which is actually a pituitary hormone not a thyroid hormone).
If you ever want to know more about thyroid disease you can join the Thyroid UK forum on this website :
I am, however, surprised at your son's low B12 after injections. I would expect values to be quite a bit higher. I wonder if your son's urinary problems are resulting in him eliminating a higher proportion of the dose than is usual.
Thank you for your reply, when we asked the doctor he said it would only bring the readings up slowly. This seemed strange but then they refused to test him again so we don't know really how it's going. One thing I didn't mention was that initially the prescription he was given was for cyanocobalamin. In December we were told he could get free injections and that the nurse would provide, so now he is having hydroxycobalamin.
Also, B12 deficiency has caused incontinence in myself and many others I know. He should probably be taking folate aswell. I'd pay very close attention to what DebraNL is saying below. Don't let this rest because he needs a lot more help to make sure he doesn[t get more horrible symptoms. His B12 is very low.
Best wishes
Did your son have any tests regarding this iron levels? Ferritin, haemoglobin, MCV.
Low iron can also cause fatigue.
Iron, B12 and folate work together to make health, efficient red blood cells.
I am an older female but I had this was one of my problems and also with the urgency that I needed to go, I couldn't hold on to it. It has mostly resolved after being on injections for 1 year.
My level was 58, my vit D and folate and ferritin were also low, I now also take supplements for these.
Intrinsic factor tests are unreliable in that they often give false negatives. If he had a negative result this does not necessarily rule out Pernicious Anaemia.
B12 still WAY too low. Get Vit D up too. My hubbie took Boots Max strength D3 every day for a year to get level up. Now 3x per week. Caffeine can irritate the bladder too. Sorry he’s having a tough time
Thank you very much for commenting, I had not checked back for a good while and noticed other kind comments I had missed. With the covid situation now everything has been on hold with regards to doctors appointment and blood tests. He has always had low vit D and does take supplements he also takes B12 tablets(when he remembers) one nurse said have them and another told us not to, that the 3 monthly injections were enough. Of course they won't test for B12 or D now so we can only hope that they are high enough. He did manage to get some video counselling as it was suggested to him that it may all be in his head. This hasn't really helped but covid and lockdown etc has meant he has been at home mostly, so good in a sense. He was actually told to stop drinking the only soft drink he likes, lipton's iced tea, he only had a glass now and I don't think the caffeine content was very high. He has now been off that for over two years, only drinks water. He is still able to have his b12 jabs thankfully. Thanks again for your reply.
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