I am 47 years old and suffer from dizziness (off balance and not able to walk for long distances and the heart races) and anxiety. After 15 years of being fobbed off as anxious and being asked to do breathing exercises, Last year, I found that I was low in B12 and got liquid supplements. I must add that I’m mostly vegetarian . I eat chicken and salmon once a week.
I became better but Last month, I was dizzy again and asked my GP for a blood test. My B12 level is 257 ng/l and ferritin of 38 ug/l. He said it’s normal but I’ve started liquid supplements again - 1000mcg of methylcobalamine, spatone twice a day and 10 drops of vitamin D3. Why have the levels fallen in a year when I became better last year? Should I ask for B12 injections? Apparently, I don’t have anaemia. Thyroid and Hba1C are normal and so is folate. I have an elevated WBC with raised neutrophils. I wanted your advice before I pestered the GP. Thank you. I’m very grateful.
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if you've remained on the daily 1000mcg of b12 and level have fallen again perhaps you have an absorbtion problem.
Did you evef get the IFAB test that picks up 50% of thise with PA
I wouldd try another form of b12 and trial s higher dose.
some actually get dizzy on methylcobalabin. H
if you had a blood test your level might be high from supplements but you may well be deficient if not reaching cell level and just swirling in your blood ???
You got better once and hopefully will again.
Also have full bloods to rule out othef things.
The Gp may offer a trial of b12 injections
I personally woukd try other options first. if you think you simply can't absorb enough from your diet but was absorbing enough from s supplement to get well for a year. I.e upping oral dose and a different form or mix may work for you.
Thank you so much for your response. I was on liquid supplements till December last year. I stopped any supplements for most of this year and was dizzy again in august which is why I asked for the blood tests.
The Gp isn’t offering injections. Should I ask? Is 257 a low enough level of B12? He isn’t doing the IFAB either. I can ask him.
Thank you Nackapan for answering my post. I’ve been worrying myself silly.
Last year, when I was dizzy, my B12 level was 299 but vitamin D was very low at 33. They tested again a few months after I started the supplements and it went upto 382 and vitamin D to 81.
This year, the GP tested my blood early October and the B12 level is 257. I was a little shocked as to why it had become so low. I guess I need supplements as I’m mostly a vegetarian. I’ll continue taking the supplements. I go to a kinesiologist who helps me with finding the right supplements. Last year, it was liquid hydroxocobalamin. She said this time my body needed methylcobalamin. If I don’t see any improvement in a month, I’ll go back and ask for last year’s supplements.
Thank you for the advice. I am incredibly grateful. I have been so stressed about this and don’t know what to do. Thank you.
Do you take any supplements to increase your ferritin levels? Having low B12 levels even if they are within the reference range is not a good idea; it would be better to say that your levels are low rather than normal. Vit D levels of 33 are not normal but it depends on local guidelines; less than 50 is deficient in many areas. Vit D levels should be high at the end of the summer but will drop significantly after a winter. In what month was the Vit D test done?
You could ask to see an NHS dietitian though you typically see a dietitian when you have digestive problems. Do you have any problems with your digestive system?
thank you for your answer mickeymouse42. I’m taking spatone with vitamin C for the ferritin though that doesn’t seem to increase. I’m sorry I wasn’t clear. Vitamin D was 33 nmol/l last year and increased to 81 nmol/l with supplements. The first test was done in June last year and then in September.
This year- 2022, I was taking supplements off and on and when the test was done in October, it was at 70 nmol/l. The GP said that it was satisfactory but I’m taking supplements regularly again. My concern is more for the B12 which now seems to drop every year.
do you have any digestive problems? What level did your B12 reach after taking supplements? You have mentioned a reading of 257. What other readings do you have?
My digestion has always been a bit odd (a little more flatulence than usual) but they tested for hpylori and it was negative. I don’t have any stomach pains or any other symptoms. The 257 was recorded early October 2022. I started taking my supplements the week of the 10th.
Some of the other readings in the blood test done early October
vitamin D - 70nmol/l
serum folate - 6.9ug/l
ferretin - 36 ug/l
vitamin b12 - 257 ng/l
My main symptoms are imbalance (not able to walk long distances, heart palpitations and inability to sleep. I also have shoulder and neck pain.
do you have a previous B12 reading? In what period did you take the 1mg B12 supplements and did you get a reading to show how much they raised your levels?
The previous reading was last year. B12 was 299 in June and raised to 382 in September. Didn’t test after that as I was getting better but stopped the supplements in December (I finished the bottle of liquid supplements). This year, the B12 reading is 257. I didn’t expect to be low again this year but I guess I need supplements throughout the year.
definitely keep up the B12 supplements and get your levels up to the high end of the range. I discovered that I had low levels of B12 at the beginning of 2021 (a level of 201 ng/l). I started with 100mcg daily supplement that raised my levels very slowly ( by about 100). I then switched to 1mg and raised levels to 500 over 9 months. I've a gut malabsorption diagnosis that explains it. In your case it's unclear. Bear in mind that the Cochrane review of oral supplementations says in its conclusion that the evidence is very poor:cochrane.org/CD004655/ENDOC...
Thank you mickeymouse42. I’m very grateful for your time and detailed answers. I don’t know the reason for the drop in vitamin b12 but I need to raise it. I guess it’s just going to take time. I need to be patient but as you can understand, when you have dizziness, life can be difficult. I became better last year and will see where I get to this year. I just thought perhaps I should ask for Injections but will wait for a month and see how I am. Thank you once again. I’m very grateful for your time.
Do you continue with the 1mcg everyday? Even after the increase in B12?
my folate levels dropped so I'm taking 400mcg of folate together with a mixture of 1mg B12 some days and 100mcg other days (perhaps averaging 500mcg a day). The key thing is your symptoms I've had severe dizziness and now my levels are up to 500 things are a lot better. If you continue taking B12 and the symptoms of dizziness do not abate, see your GP and ask for an IFAB test which is done with a B12 test. The IFAB test (for PA) is unfortunately not necessarily accurate but it's worth doing.
Thank you and I’m glad to hear that the dizziness improved. My dizziness is my main issue and the heart races as I become anxious and want to sit down. I’ll certainly do that. Would the dizziness improve in a month? Last time, it took 4 months. I’m hoping It will resolve faster but I don’t really know. I’ll ask the GP for an IFAB test in a few months?
it took about 9 months of daily 1mg tablets to get my levels to 500. When you see your GP next, talk through how much B12 and ferritin you are taking and discuss your test results in the light of the supplementation. If you take 1mg a day for 2 months and levels have not even raised by 100, hopefully your GP will investigate further.
thank you. I hope he does but I’ll ask for another test in 2 months and hopefully, i’ll feel better. Thank you for your advice. I’m incredibly grateful. No one really understands how this is but I’m glad I found this forum and all of you who are so kind. Thank you so much mickeymouse42.
if you aren’t eating much meat or dairy then b12 supplements may work for you. You could ask your Gp what dose you should take and whether you can have a repeat b12 blood test in three to six months time. If your levels are dropping on supplements then it might suggest an absorption problem but at the moment if you don’t eat much meat then you may just not be eating enough b12.
thank you gen89. Thank you for your advice. I’ll ask for a repeat test In 3/6 months. The 257 for the B12 was this year and this month ( October). I stopped taking supplements as of December 2021. It was a drop in 9 months. I think I was just surprised that it dropped so much in just 9 months and also how it made me so dizzy. I did have dairy in the summer but it was probably not enough.
In UK, my understanding, I'm not medically trained, is that a person with B12 deficiency with neurological symptoms should be on B12 injections whatever the cause of the B12 deficiency even diet.
Link about "What to do next" if B12 deficiency suspected
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
I suggest you track down the local B12 deficiency guidelines for your ICB (Integrated care board) or Health Board.
Read blog post below if you want to know why I urge UK forum members to do this.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 films and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
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.
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