For just short of two years i'very been unwell and was diagnosed with spinal stenosis and two degenerated discs c4/c5. I have insomnia, burning mouth syndrome, glossitis, oral candida, foot drop, nerve pain, twitching eye, tingling in feet, muscle weakness, blurred vision, heart palpitations, deep sighing, memory loss, metal taste, chronic fatigue and Exaustion.
Anyway I have been questioning my blood results for the past 12month as my doc said I wasn't absorbing vitamins. I am a 8yr user of ppi medication (omeprazole)
I was referred to a dental hospital and she checked my b12 it was 149!! Wbc 18.6 mch 32.3 neutrophils absolute 9.6 monocyte absolute 1.0.
Serum iron 22 iron saturation 39. The doctor has treated me before blood test with iron and foliate because of malabsorbption and has now stopped.
Latest b12 level after are 199. They have refused to give me b12 injections, any advice would be appreciated.
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lisa70
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I hope that you are not still taking omeprazole! It has obviously suppressed your stomach acid so much, that you cannot absorb Vitamin B12 . Serum B12 at 149 is low,and is probably the cause of your symptoms. 199 is also low. You need B12 injections as soon as possible, else you are in danger of getting irreversible symptoms.You musn't waste any more time. Just start self-injecting with loading doses(6 over 2 weeks) and make sure that you are either getting plenty of folate in your diet, or supplement . I will send you some ampoules of Hydroxo if you message me privately, I don't know if you are in the U.K. Have you been tested for the antibodies to the Intrinsic factor? That proves P.A.- But taking a PPI for so many years will have severely depleted the stomach acid you need to absorb B12.
My B12 was 20 and iron 8 with large red blood cells. I got angina and fell around. My GP referred me to the angina clinic who diagnosed severe anaemia and B12 deficiency. It can go very low. After the loading injections the angina went. The three month treatment keeps me ok, but I am still inclined to lurch and foot drag when tired it strikes at other times without warning. I also get the tingling and muscle pain. I eat seaweed and have found dairy milk helps with it. I also use a boost spray. My GP said I dont need it, but I listen to my body and my counsellor who is also a diet therapist. I have looked much more into my health issues myself and got other advice on my feet etc and joined a stability class. Listen to your body and badger your GP for answers. Take someone with you for moral support. Good luck listen to your body this complaint is insidious x
I have come to believe the food most of us can afford, together with what's lacking in processed food and bad things that are added, is going to mean many of us will suffer body effects. I started to understand, and I can only do the best I can do in what is a very complex science. I have a very good book called (The vitamin Alphabet) so I can make the best choices of what to eat, to help myself. A diagnosis of B12 deficiency is from a blood test, but it can be a roller coaster ride, for me it was highs and lows from injections. All the best.
Thanks for the support it seems there is lack of knowledge with Doctors about b12. I'very bought the boost spray for now but I agree I definitely need injections.Wedgwood I will message you and i'my in the Uk no I haven't been tested for antibodies, maybe I will include that in my letter i'm writing to docs today. Guess all we can do is keep fighting but it's so soul destroying. Good luck all.
It looks as though your B12 has been very low for a while Lisa, causing all the neurological symptoms you mention, (listed in the B12def. link below) and it's essential that you receive injections as there is a short window of opportunity before neurological symptoms become irreversible. I hope if you email or write enclosing this extract from the BCSH guidelines, as well as the latest BMJ research document, it will help persuade your GP to take your symptoms seriously. If not, others on the site self Inject successfully and will help with this.
"The BNF advises that receive 1000 ug i.m. on alternate days until there is no further improvement".
The above UK research document is supported by many research papers and is peer reviewed. It also tells your GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.....
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."
Thank you all for the advice and help it's much appreciated. I had an hysterectomy last July and then further surgery December for extensive adhesions. I haven't been right since and battled to stay working but some days I can't get out of bed I feel so exausted. I have printed off the info links put on and wrote my letter today. Hopefully they'll read it and not just throw it in the bin.
Having had two surgical procedures, you will see in the links that nitrous oxide in anaesthetics inactivates B12 if you are already low, so could have made things worse,
Would it be possible to take someone with you to your next appointmen for support - best wishes for a good outcome Lisa.
He's crafty this GI specialist. He's wrote to the oral surgeon saying B12 is normal after re-test!! Oral surgeon results 146pmol/l and Docs results were 199ng/l. If you convert 199ng/l to pmol you get 146.862pmol/l. No difference!! What is wrong with these people? I have always led an active life until 16 months ago and I don't understand why they would leave anyone of us feeling this way. Unbelievable!!!
I was diagnosed back in 2007 with stenosis ( lumbar spine ) and had surgery in Germany. I live in Crete. Now I am better informed I am thinking it was de-myelination of the spinal cord and not bony overgrowth causing the cord to be compromised. My terminal Ileum was removed over 40 years ago - the area of the gut where B12 is metabolised. I only started weekly injections around 18 months ago. Many things have improved but due to the years of neglect and wrongful diagnosis I feel some things will remain. I am now 69 and feeing tons better.
Have you had your thyroid checked - often when people have thyroid problems they do often suffer female issues and of course very low B12. Also you could possibly have suffered LOW stomach acid so the PPI was quite the wrong treatment - low thyroid can = low stomach acid. We need good levels of acid in the stomach to harvest the B12 from the food. When stomach acid is low it cannot break down proteins - food hangs around in the stomach for too long - can ferment - and sends fizzing upwards - presenting with the same symptoms as high acid.
it is too easy for Docs to treat a myriad of symptoms without seeking the root cause They have a pill for everything !
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They have a pill for everything !
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