Haven’t posted for a long time but would like to pick your expert brains, as I’m having a few issues at the moment and speaking to a Rheumatologist this evening. Also on the emergency list for a hip replacement.
Anyway- here goes. 2013 Low B12 223 and Positive Gastric Parietal Abs. IF Neg
On going B12 symptoms through the next so many years and low Folate 3.2. Nerve pain Spine/legs, ankles, toes.
2017 B12 131 low folate GP starts me on B12 injections for life. I start SI eod too. After a year or so I give my self fortnightly- monthly injections with my 3 monthly maintenance does from GP too.
Had 3 endoscopes all failed, woke from sedation and pulled and fought to get tube out of my mouth. So no diagnosis. Terrible acid reflux, had a barium swallow that confirmed this, choke on soft foods and reflux burns my throat. Only take omeprazole if I’m absolutely desperate, as I know it will deplete my B12.
So recently having lots of issues and have been in an awful lot of pain with my hip, hoping that’s sorted in the next few months. Taken different pain relief tablets, anti inflammotorys and none of them have seemed to work. Also my thyroid has been stable and that’s out of sink too and it seems like I’m having trouble absorbing that too. On liquid Morphine for pain relief. I’ve had loads of blood tests done of late and they’d checked my B12 levels without me knowing but I couldn’t believe how low it was still after 3 years and going through over 100 vials SI. The level was 250??? Is this normal and does it take this long to build back up in your system?
2 weeks ago I had another positive ANA test 1:80 Speckled pattern but my Gastric Parietal Abs were all gone- NEGATIVE? My potassium has gone high. Diabetes borderline. Reactive lymphocytes, High Neutrophils, Lymphocytes, Red blood count and white blood count. Also I did a urine dip test at home several times and I have High Specific Gravity in my urine, drinking loads, weeing large amounts and frequent urination. Anyone got any ideas what’s going on, how to get a diagnosis of PA or Chronic Gastric Atrophy or a reason why my B12 is so low still?
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angelharley
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Taking Omeprazole will not affect your B12 if you're having injections. It can only hinder absorption from the gut, and the injections bypass that. So take the tablets if they prevent the pain.
No idea why your B12 should be that low after monthly injections. Ask your GP.
The only thing I can think of is that your kidneys are not reabsorbing B12 efficiently. But I've never heard of that before.
Thank you for you reply. I’m urinating out volumes and have been like this most likely at least a couple of years. My Sister said to me, while we were on holiday together last year and the year before “ you’re still weeing like a Camel then” I didn’t take it on board, just thought it’s ones of those things that happen as you get older (I’m 55 went through menopause at 46/47) until of late, it’s been frequently weeing, lots of it and thirsty/ dry mouth for me to decide to do a urine dip test. Also my EGFR kidney blood test was 54 which screamed alarmed bells and ankles go up and down too occasionally. I will call him next week, as I need my B12 raised before my hip replacement.
It would only make sense if this was an active B12 test result (or HoloTC). If this test was done without your knowledge, is this a possibility ? Maybe clutching at straws with that, but otherwise it's a mystery.
I can understand your worries about B12 levels and needing your hip replacement to go ahead. You must be in agony.
What does your GP think about your kidneys ? There is a struggle going on there that warrants investigation. Don't try to do all the work yourself - your GP should be working out what is going on with you. Also, at 55, I wouldn't be putting anything down to age- but then I'm 63, so I would say that !
Have you ever seen a neurologist ? I'm thinking that your neurological B12 deficiency symptoms would suggest that an MRI of your spine should be done, in case of unresolved myelin sheath damage.
Talk all of this over with your rheumatologist. I had a telephone consultation with one yesterday- she has arranged for me to have an MRI on spine today because of my osteoporosis and lower back pain. Things can move quite quickly if you get the right person.
Thank you, you’ve been really helpful! I’ve had 2 spine operations in 2004 & 2007 to have a disc removed and fusion. It is a bit of a mystery and I feel I need a diagnosis regarding the B12 Deficiency so I can manage it efficiently and have check ups of my stomach if need be. I think they must of done the B12 test just to rule it out, as I’ve never had a problem with my surgery refusing my injections through Covid and they’ve told me they are life long. Next week I’ll phone my dr and query this with him hun, as I thought my B12 should be in the thousands now.
Assume that much folate has been prescribed and level is being monitored by GP ? Unlike B12, folate can have side effects if over range - which I think can be somewhat similar to B12 deficiency symptoms, so making it more difficult to identify. Needs keeping an eye on.Others that can be affected by B12 deficiency usually ferritin and vitamin D, and thyroid having to cope with all this can struggle to.
I'm hoping all this has been checked and treated where necessary by GP, then monitored regularly. Could be that B12 has been checked as a functional problem suspected (?)- can't see why else they'd bother. Especially with so much else to deal with.
Just to add that anti inflammatory pain killers will cause or exacerbate stomach/reflux issues and can be quite dangerous. Even aspirin can cause no end of problems and did for me, with acid burning stomach, faintness and nose bleeds. Personally, I can't take ibuprofen at all without being in rolling-on-the-floor agony, worse than the original pain.
It was ibuprofen that led to my Pernicious Anaemia diagnosis.
A gastric bleed, caused by ibuprofen, resulted in a severe iron deficiency. During the gastroscopy to look for the bleed (they never found it) they noticed the gastric atrophy and ordered a B12 test. Result was 'too low to measure'.
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