Hi. Sorry for the long post here. I’m new and have some questions. At the start of the year I had some fatigue and felt breathless after going up stairs and my running was really hard. I finally went to GP in March and blood tests showed low iron, low B12, low folate and borderline low thyroid. Cholesterol, liver and kidney function were all fine. I have had 3 months of iron tablets and my iron is back up to normal levels. From 11 to 30. But in the same 3 months my B12 has dropped from 130 to 115. So I did some research and I asked the GP to test for PA. The reception staff told me today that the test is positive but I have a telephone consultation with the GP tomorrow to discuss. Can anyone give me some advice on what I need to ask?
As a bit more history I have been anaemic before and needed iron in my early 20s, I’m 41 now. There is a bit of history of anaemia in the female side of my family. I have been refused at blood donation sessions a few times over the years due to low iron as well. Enough for me, not enough to give. I travel overseas a lot and I exercise a lot. I run regularly and did a 10k run in May this year and a 15 mile hike, also in May. I also regularly attend zumba classes. I am still doing all this at the moment and don’t feel really tired unless I have. Had a bad nights sleep. I am not sure if I have a family history of PA or not. My Nan did need b12 shots but she had diverticulitis and was over 70 when they started. She Passed a few years ago age 91. I have no other illnesses (chrons, celiac etc) that would cause PA. I have a list of questions below, can anyone shed light or think of anything else I should ask my GP (consultation tomorrow lunchtime):-
Could it be fish parasite from my travels abroad?
Could it be heliobactor?
Is that fall from 130-115 in 3 months a lot?
Is 115 very low?
Could I have had this for ages and not known about it? Or as I have no nuro symptoms or debilitating fatigue yet does that mean it’s a relatively new illness to me?
As I can take iron orally should I also be able to take B12 orally?
I think Dr will put me on jabs as it has already been discussed in my previous telephone consultations. Do I need to ask anything about this.
Written by
PArunner
To view profiles and participate in discussions please or .
Hi PA runner. . My husband has PA and you can not absorb b12 orally if you have PA , you will need injections for life . 115 is extremely low . If you have nurological symptoms you will need alternative day injections until no futher improvement . You also need to carry on with oral iron pills until your ferritin level gets to at least 60 to help utilise B12 . You will need to take folic acid tablets also . I hope your GP follows the nice guidelines , if you can print them out and take them with you to your appointment that may help . Others will come along soon with better advice as I’m still learning . Best of luck with your treatment
as a previous runner myself, i am going to suggest h pylori testing. my ferritin was fine at 98 ( i was eating meat everyday) when originally tested and supposedly my serum iron 69 and iron saturation % at 21 were also fine. all "fine" means is in range. enough for hemoglobin maintenance.
i was tired.
i demanded h pylori testing to rule it out (due to b12 deficiency). i had to demand, as doctor said i didnt have h pylori because i had no heartburn.
well i was positive for h pylori.
after 2 rounds of antibiotic treatment (1st round of antibiotics didnt kill it) my serum iron is now at 109 and iron saturation % at 35. hmmm
You have Pernicious Anaemia. The Intrinsic Factor antibody test is about 98% accurate when positive. Combined with very low B12 it’s a certainty.
That means you need injections for life.
Diverticulitis, Crohns, coeliacs, etc. do not cause PA. They can cause a B12 deficiency, but PA is a specific autoimmune disease, and you have it.
The B12 molecule is too big to pass across the gut wall without help. That help comes in the form of a protein called Intrinsic Factor. Without IF any B12 you consume, in food or tablets, goes straight through unabsorbed. Your immune system is destroying IF and/or the cells in the stomach that make it.
You’ve obviously been caught early as your symptoms aren’t too bad (many of us can only dream of walking 15 km again) and you have no neurological symptoms. So you should be OK on the normal routine of one injection every 12 weeks.
Many people don’t have a problem once diagnosed and treated. But some find 12 weeks too long between jabs. Start keeping a diary on how you feel, so you have some data if you do need injections more often.
Mine is from alcoholism, I was a heavy drinker for 20 yrs since I was a pre teen. I am 42. I found out about mine in February so I dont know how long ive had it but I have all the extreme symptoms and I have to see a GI because my GP was about to give me my first b12 shot but wanted to check my stomach first because I have lost 50 lbs since Feb I was 167 now 117. The pain in my stomach made her call 911 and after ct scan they said I need a GI to check because it souunds like gastric atrophy. So what my point is, were you ever a heavy drinker? I just found out how much damage alcohol does to the body.
Hi Jenny, thanks for your reply, I hope you are starting to feel better. I was a heavy drinker in my teens, certainly more than the 14 units recommended in the U.K. so I certainly could have done some damage during those years. I never been alcoholic and have always had a few days a week where I didn’t drink. I am the kind of person that if I drink too much I am sick and then have to go home so I have always tried to avoid getting to that stage. I think my GP was thinking along the same lines as he asked me about alcohol consumption and did a liver function test which came back fine.
Your B12 is very low parunner. Neurological symptoms are often very subtle and surprising so may not be easily recognised - here is a helpful site with a comprehensive list :
"Early diagnosis is essential if treatment is to be effective, for the reversibility of neurological symptoms is largely dependent on their duration. The brain lesions which form part of the neurological syndrome of vitamin-B12 deficiency, although they have been recognized for more than half a century, are still much less familiar than those which occur in the spinal cord and peripheral nerves, to which by long usage the term “subacute combined degeneration” has been applied".
...................
It is fairly usual for those with PA/B12def. to find their symptoms return after overdoing exercise or undergoing stress and I believe Dr Chandy warns of this on his B12org. website.
Several research links refer to athleticism/overexercising and the connection to neurodegenerative diseases, particularly MND (ALS in the US), like MS, sometimes misdiagnosed. Interestingly, ALS is named after Lou Gehrig, a famous US athlete. Roger Bannister also comes to mind as having suffered from Parkinson's in later life. MND/ALS is treated with high dose Methylcobalamin B12 injections in the US and is extending lives.
The book, " Vitamin B12 Deficiency and Chronic Illness', also has references and links to athleticism/extreme exercise and neurological illness.
Update. Spoke to GP today and I have 5 injections of b12 as my loading dose then 1 every 12 weeksfor life. Iron is 30 and folate is 5.1 so back on the 200mg iron tables 1 x day and supplementing with folate after my first couple of b12 injections are done. GP has advised I have a shot every 12 weeks and retest iron, folate, b12, thyroid in November. I’ve looked at the symptom list and the only ones I have are occasional lightheadedness on standing up and some acid reflux and mouth ulcers. I am also getting a h.pylori test. I feel pretty normal in myself and yesterday ran 5k in 30 mins so I may be very lucky and have caught this early before any neurological symptoms have developed. Back from my first shot now and feeling fine. Also just discovered that my maternal grandmother had pernicious anaemia as well so I suspect that his may be hereditary.
hi all, thought I would update. I seem to be fine on a combination of 3 monthly b12 and Iron Tablets. I haven’t noticed much difference in using b12 spray or in taking any other b vitamin supplements. I can still run and do all my other sports. I do notice that before my 3 monthly jab I have vivid dreams/nightmares and I am a bit more tired.
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.
10 year old daughter- referral to neurologist
Help with diagnosis (GP) and anyone sought help from private healthcare?
New B12 Oral Treatment for PA
Seeing a biochemist to discuss maximising PA treatment...any ideas for questions?
