Sorry if this is the wrong place to post but, i have a family history (on both sides) of PA.
I eat meat and dairy and i dont smoke and dont drink often,
I do have frequent diahorrea and nausea endoscopy nd colonoscopy showed inflammation of the lower sphincter of my stomach and duodenum. I was diagnosed with GORD and the lower bowel issues atributed to IBS/ Hypermobility.
I regularly take OTC multivitamin with iron.
I have previously over the past 15 years or so had borderline and low b12, i have been treated with prescribed oral suppliment on a few occasions.
For a while, My b12 was up to around 460 which i noticed i felt better at (prior to me knowing any test results) but in about 6 months it halved to around 200 (again i began feeling worse prior to finding these results) i have not been able to get it to rise again.
Iv also had ferretin levels of below 30 for at least the past 3 years, they reached 16 in november last year, i was treated with ferrous fumerate??sp which brought the levels up to 55 at the begining of march this year. But again it is falling rather than being stable.
I am fed up of being so fatigued and generally feeling rubbish. Im trying all i can with my diet and suppliments.
Anyone got any suggestions? Of what i can ask my GP?
Thank you.
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ella2b
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Hi, thanx for your reply. I didnt actually ask if the inflammation was from stomach acid or not. Hmm.
No difference with acv or orange. Or gluten free and tested negative for ceoliacs blood test (had been eating gluten before that so unlikely to be false). Dairy free made no difference either. Only diet that has helped is low fiber/residue.
Tested negative for H.pylori.
Currently no additional B12 other than diet and multi vit which has 2.5Ug ( its not a U though, dont have the symbol on my phone)
If you look online (Amazon is an OK starting point) there are several brands at 5000ug (mcg or micrograms / back-to-front u is the Greek letter mu).
The Solgar Methylcobalamin 5000 MCG are the most expensive but are small and smooth so readily dissolve under your tongue if your digestive system won't absorb your nutrients readily.
The others will do the same sort of thing at less cost.
I think you will do well to keep taking the multivitamin and mineral supplement too as the B12 needs a wide range of other nutrients to work.
While iron total is good the most important type is heme iron which is only available from meat. Beef and lamb are the best source by far, followed by pork with chicken some way behind.
For best absorption take iron supplements on an empty stomach (one hour before food and two hours afterwards) and not with things containing high calcium (dairy products, spinach) or eggs!
It's hard to believe all the hoops we need to jump through for defective digestion but it does help!!
I strongly recommend Googling everything to get a broader knowledge but try to make sure the information is sound and verified.
With PA on both sides of your family , you may well have PA yourself . If this is the case , you will only benefit from B12 injections . Oral supplements will not help . PA is an autoimmune condition where antibodies attack the parietal cells in the stomach . This interferes with the production of Intrinsic Factor and stomach acid (hydrochloric acid ) both of which are essential to the absorbtion of vitamin B12 . Getting an official diagnosis of PA is not always easy as the test for it (Intrinsic Factor antibody test ) is very unreliable and gives negative results when they should be positive . Even when proven , many patients cannot get sufficient injections ( usual treatment after loading doses of 6/5 in 2 weeks , is one injection every 3 months ) I have had to resort to self injection once a week to keep well. We are all different and can only find out the optimum frequency of injections by trial and error . It’s possible to obtain B12 ampoules from German online pharmacies . In U.K. they are only obtainable on prescription . Needles , syringes swabs etc. can be obtained in the U.K. .
The lack of acid in PA patients leads to gut problems, as the stomach flora is upset . No
Medical treatment for this . I found (after trial
and error again ) that probiotics help enormously . A liquid probiotic that was developed for IBS patients , called SYMPROVE, was first class . Unfortunately expensive .There are other probiotics in capsule form e.g. Bio -kult . Another possibility is -make your own — sauerkraut — organic and eaten raw . Can be purchased at health food shops or Amazon or MAKE YOUR OWN ! ( recipe online ) Also google ACHLORHYDRIA DIET . Achlorhydria/ Hypochlorhydria is no /low stomach acid . Drinking acidic drinks like lemon/ lime juice or diluted organic apple cider before eating also helps . Having low stomach acid also impacts on absorbtion of other vitamins and minerals , so a multi-vitamin and mineral tablet can help . But for PA , only injections can help with B12. Do tell your doctor about PA being in your family . Try to get a test , bearing in mind that it is very unreliable . But if it is positive , you DO have PA , but if negative , you may still have PA , Symptoms are the best indication .
Best wishes to you .
IF YOU SUPPLEMENT WITH B12 , your blood serum of B12 will register high and your GP will not believe that you have B12 deficiency .
Thankyou, i do take lanzoprasole ans have done for 10 or so years. Unfortunetly symprove is out of my budget but will get some yogurt as the beneficial biotics are more likely to survive my stomach ect. I have an apt this morning so will mention to my GP
If you are taking Lanasoprazole ,any stomach acid that you have will be wiped out. This results in your not being able to absorb B12 properly . In that case , if you cannot give it up , injections are your only way of getting the B12 that you need .
Try making your own Kefir instead of buying probiotics - I do. It doesn't cost much to buy Kefir grains; I got mine from a seller on Amazon. Once you have them it is just a matter of 'feeding' them; they are a live organism and grow. There is plenty of information on the internet. So much cheaper than buying probiotics and it will have many times more of the beneficial bacteria in it.
how were you tested for h pylori? breath, blood or stool?
i ask because with blood testing they need to check for 3 different types of iga factors. i think they are A, G and M. many blood tests only check for one or two so are not a reliable test.
also you cannot have taken a breath or stool sample test for h pylori until you are off ALL acid blockers for a minimum of 14 days.
sooo... b12 and ferritin issues. were you tested correctly for h pylori?
The gastroscopy results suggest that you don’t have PA.
PA is the result of Autoimmune Metaplastic Gastric Atrophy which involves an attack on the cells of the fundus and body (top and middle) of the stomach. But your result showed atrophy of the antrum (bottom) of the stomach.
Did they say what the inflammation of the duodenum was caused by? It sounds as if they think it was caused by excess stomach acid. If so, did they give you PPIs (Proton Pump Inhibitors, normally drugs with a name that ends in -azole)? Long-term use of them can lower B12.
Another possible cause of duodenal inflammation is coeliac’s disease.
"tested negative for ceoliacs blood test (had been eating gluten before that so unlikely to be false"
Which blood tests did you have for Coeliac Disease?
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease. If you only had tTG IgA test then I don't see how GP can be confident you do not have Coeliac disease.
What tests did you have? Sometimes people test negative on blood or stool tests but symptoms can persist, in which case doctors may consider a tissue biopsy.
Have you been checked for parasite infection eg fish tapeworm? Fish tapeworm infection can cause severe B12 deficiency. One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. A full blood count test will show an eosinophil result.
Nitrous Oxide
Have you had any surgery recently that involved nitrous oxide as part of anaesthesia/pain relief? Nitrous Oxide can inactivate B12 in the body.
In UK, emphasis in UK B12 guidelines is on treating people who are symptomatic for B12 deficiency even if B12 is within range.
I had typical symptoms of B12 deficiency including neurological symptoms for years with B12 results between 300 - 500 ng/L. Some UK GPs are unaware that it is possible to have B12 deficiency with an in range result. Many on this forum get told it's ME/CFS, depression, hypochondria or psychosomatic.
If you're in UK, I'd suggest reading all following UK documents/articles.
I'd urge you to consider joining and speaking to PAS. There is an answerphone so messages can be left. May take a few days to get reply but may get through to PAS chairman, Martyn Hooper. PAS can support people seeking PA diagnosis, see blog post below.
I want to make it clear that I am not medically trained. fbirder mentions that gastroscopy results do not suggest PA. I wonder if a person in very early stages of PA would show enough AMGA to be picked up on a gastroscopy.
Have you been tested for PA?
With your family history, I would be surprised if you have not been tested.This would be an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. Flowchart link further up page outlines when PA or Antibody Negative PA can be diagnosed in UK.
Have you got recent results for folate and full blood count tests? There can be useful clues on FBC test as to whether B12, folate or iron deficiencies are possibilities.
Has GP considered ordering MMA, homocysteine and Active B12 (Holotranscobalamin) tests? Results of these tests may be affected if you have been supplementing B12.
You mention in first post that B12 has dropped and iron levels are falling. Low iron can lead to small red blood cells (microcytosis) and B12 and/or folate deficiencies can lead to enlarged red blood cells (macrocytosis). So iron deficiency can mask effects of B12 or folate deficiency on red blood cells.
2) PAS library section has leaflet "An Update for Medical Professionals: Diagnosis and Treatment" available to PAS members only. Some UK forum members have passed this to their GPs.
3) I gave a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and B12 Deficiency" to my GPs.
Sadly, many on this forum have struggled to get a diagnosis and adequate treatment. B12 deficiency is not always as well understood as it could be amongst GPs and specialists. I suggest being well prepared for any appointments where B12 might be discussed. Do you have anyone supportive who can go with you to appts? Even better if they have read up about B12 deficiency and PA.
I am not medically trained, just someone who has spent years trying to find out what is wrong with me.
If in UK and with the symptoms of b12 deficiency, my understanding of UK B12 guidelines is that you should be treated even if B12 is within normal range.
See BMJ and BSH links in my post above. See UK NEQAS B12 Alert in following link.
In UK, my understanding is that this test is used as a second line test when tTG IgA test gives an inconclusive result eg a weak positive.
Are you sure this is the only Coeliac test you had? Have you got access to your medical records?
Due to previous difficult experiences, I don't trust what I am told unless I have copies of results in my hand.
Have you been able to track down any recent Full Blood Count results (known as Complete Blood Count in USA)?
Flowchart link in my post above, makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA, Intrinsic Factor Antibody test whatever their B12 level.
I think it is possible that your GP has not read the BSH Cobalamin and Folate Guidelines.
"I get tremors too but atribute that to dystonic reaction/familial tremors."
B12 deficiency can sometimes be misdiagnosed as other conditions eg Parkinsons. See next link.
Having scrolled through your posts on other fora I am wondering if you have had Hashimotos ruled out. Many of your symptoms would also fit auto-immune thyroid disease. Hashimotos is known to be a cause of absorption issues and sadly in the NHS thorough testing is very rarely carried out leaving people undiagnosed or very poorly treated.
The complete testing required is - TSH - FT4 - FT3 and the Anti-bodies TPO and Tg. The NHS do test the TSH - occasionally the FT4 and rarely the FT3 - which is the most important one. Only the TPO antibody is tested - but the Anti-Tg should also be tested.
Have you had your VitD tested ? Needs to be around/over 100 if you are in the UK. VitD is anti-inflammatory - steroidal - pro-hormone .... so much more than a vitamin.
B12 is metabolised mostly in the Terminal Ileum before returning to the liver - so with IBS this could put the process in difficulty ! I have Crohns so having had lots of surgery I have to inject B12. I also have Hashimotos ...
No I have not used Medichecks as I live in Crete and can have any test I need - although I do pay for some ! Medichecks is used by 1000'on Thyroid UK as it is the only way to have the correct testing done. I will post the link for you below ...
Blue Horizon is another company that is well used.
If your TSH fluctuates then it could indicate Hashimotos so it is very important to have both the FT4 and FT3 tested along with both anti-bodies. TSH is a Pituitary Hormone that tells the Thyroid to pump out T4 which is a storage hormone. With the correct nutrients in place - like B12 - Folate - Ferritin and VitD - it will convert into the ACTIVE thyroid hormone T3. T3 is needed in cell of the body - with the biggest demand from the brain.
Again VitD can be low with Hashimotos - as it was in my case.
Always important to have the TSH tested at the same time of day for comparison - early in the morning is best - and fasting - just water. TSH fluctuates throughout the day and and after food !
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