Hope someone can help, I've been ill for a number of years and have a wide range of symptoms including those of PA. Until recently my blood test have always been within range! I am now showing positive for several autoimmune conditions.
I had the below tests carried out 5 months ago and was again informed all OK. Are they OK? Should I not have symptoms of PA with the below results?
B12 - 222 ng/l (211-911)
Folate - 4.8ng/ml (3.4 -15.8)
Ferritin - 58ng/ml (22 - 322)
Your input would be really appreciated
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calrie67
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Your B12 is low. According to Sally Pacholok, author of "Could It Be B12? An Epidemic of Misdiagnosis", 200 to 450 is the gray area where neurological symptoms can occur. Doctors are using a normal range for B12 that is too low. Are you experiencing neurological symptoms? If so then you should get treatment.
Have you been tested for pernicious anemia? If not, get tested before getting any B12.
Ask for a methylmalonic acid (MMA) test. This will determine if your B12 is working properly. You can also get a test for anti-IF (Intrinsic Factor) antibodies. A positive test is a strong indication of PA. a negative result doesn't mean you don't have PA as false negatives are fairly common.
Can you tell us what other autoimmune conditions you have tested positive for? Low B12 often seems to accompany other conditions. Have a look at the Pernicious Anaemia Society website, you can download and print a symptom list. Maybe if you took that to the GP with all your symptoms ticked he might listen. People are often symptomatic even with levels in the 300-400's. Hope you will get further tests and some help. Doctors don't seem to be aware of the permanent damage that can occur if it remains untreated. Best wishes MariLiz
I currently have, Hashi's Thyroiditis, RA, and Sjogren's syndrome and ? over Lupus (one positive and then negative blood test so not diagnosed yet ). My kidney function has reduced by over 30 (GFR) in the last 12 months but my G.P. says this isn't relevant. I also had a private ultra sound on my liver/Pancreas which show a fatty/inflammation, I don't drink alcohol and eat a healthy diet, my gallbladder is thick too, again all dismissed by my G.P.
I tick nearly all the symptoms of PA, in fact some of my first symptoms where numb/pins and needles in the hands and feet, balance problems, speech and memory problems, along with fatigue brain fog etc. etc.
For a long time my blood tests were all negative and all my G.P. wanted to do was give me anti-depressants for the depression I don't have! Even with positive bloods he didn't believe me! I have recently moved G.P.s and although the new one a little more proactive he is very abrupt/rude and will not have any kind of discussion, basically what he says is not open for discussion!. I think I will have to move again.
I feel such a nuisance, this has been going on for so long time, all I want is to feel better.
Sorry for the rant!
Hi,
I'm not a doctor so I'm just providing some personal experience and suggestions.
For starters, it seems that your B12 levels are low/normal. For some, this may be okay but for others, you might have symptoms of low B12. You may need more.
Also, the blood test you took might only tell you what B12 you have floating around in your blood but not what's really getting inside your cells. If you have a methylation defect like MTRR ++ you may not be able to convert standard B12 (Cyanocobalamin) to it's methylated form (Methylcobalamin). You can test your levels at the cellular level with the test called SpectraCell. Check out their web site at spectracell dot com (Not sure I can include links or not). If your levels are low, then that could be why you have symptoms of low B12. And it could be low because you need more for whatever reason, or you may have a methylation defect, MTRR ++.
You can have your methylation status tested with the 23andMe genetics test. It's the cheapest. Just go to their web site to learn more. Then once you get the results you will need to use a 3rd party web site to convert the results to a more data based format so you can see what your methylation defects might be. (Even though you may have one, doesn't mean it's active or causing issues). You can learn more about methylation at mthfr dot net. This site's primary focus is on the mthfr defect but people talk about other ones as well.
This site talks about B12 Deficiency: b12deficiency dot info. There's a list of symptoms and other info. But, they don't go into methylation issues as a cause for the defeciency. That you will have to look elsewhere for info.
I'm MTRR ++. I require the active form of B12. It really helps. I'm currently having my Ferritin and Folate levels tested.
Anyway, maybe these tests/info can shed some light on why you have symptoms. I'm assuming your symptoms of PA are similar than that of B12 deficiency? If so, then you might look at these things I've suggested above.
It is very likely that when you have all those other autoimmune diseases you might also have pernicious aneamia. You should 100% be checked for that. I can't see with your other diagnosises that they would refuse to do that.
You also need to check homocysteine. A high homocysteine reading is an indication of a b12 deficiency - even when b12 is within ranges.
I was diagnosed positive for PA as I had antibodies for intrinsic factor and was diagnosed b12 deficient at 257 with I high reading of homocysteine.
Am wondering about your Hashimotos ? Are you receiving treatment ? If so how much Levo or NDT ? And do you have any results of recent blood tests ? I have Hashimotos - along with Crohns - another AID. Your Ferritin would be better to be around 80/90 for good conversion to take place of thyroid hormones - T4 has to convert into T3. Your Folate needs to be higher too. Wonder where your VitD is ?
Your B12 is far too low when you consider only 20% of that result reaches the cells where it is needed. A result under 500 can produce the neurological symptoms....which need to be treated....
Do insist on testing for Intrinsic Factor anti-bodies as others have suggested. If your GP continues to be difficult there is a piece on the first link I gave you about composing a letter to your GP He at least should be able to answer the question - what is causing my LOW B12....
Do you have gut issues - as most Auto-immune issues start there. Am sure you are well informed in that area - if not then do please ask for information - happy to share....
You seem to have a lot on your plate - and I am so sorry your GP is far from cooperative. They are just so afraid of Auto-immune issues - due to lack of understanding methinks ....
The anti-IF antibody test is only accurate about half the time. So just because you tested negative doesn't mean you do not have PA.
Marz posted a link to the BCSH guidelines a few posts ago. Here is what they say in the summary -
"In the presence of discordance between the test result and strong clinical
features of deficiency, treatment should not be delayed to avoid neurological
impairment."
In other words - doctors should treat the symptoms not the numbers. Go back to your doctor and explain that you would like a course of B12 injections to prevent you getting sub-acute degeneration of the spinal cord secondary to pernicious anaemia.
Unfortunately the G.P. appointment didn't go well, I don't think he liked the fact that I asked him to review my results in conjunction with latest clinical guidance. He basically shouted at me and informed me that he wouldn't be doing any more testing!
Upset is a bit of an understatement of how I'm feeling right now, I have no idea where I go from here?
How dare he raise his voice to you, it must be that he thought that he'd get his point overy bether that way. Perhaps his wife didnt butter his toast properly that morning. Another bully who is forgetting that he's a public servant.
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