Hello everyone, I hope to find a little clarity. I'm afraid this is a long post. I'm so sorry. And with my brain these days, I will try to make things clear and not jump around. But a lot has happened this month and I am just very confused and upset. Even a bit depressed and feel hopeless. I don't even really know where to begin. Except to say that several doctors have denied my positive IFAB test over the past month and said that they think it is a false positive due to having started my loading doses. I only had three injections at the time of my test. They want me to go without B12 for several weeks to take another one. I can't do that. I'm afraid of reverting. I live alone and have old pets to care for.
I will post all my current test results and a few past to show a pattern. I don't have any past B12 tests as no one thought of doing them in 38 years. I was diagnosed May of 2022 with B12D. So tests before that are preB12 diagnosis.
As of now, I have been to 4 hematologists in 6 months. 3 in the past month. The last two have stated that I am storing too much B12 and that my system is backed up with it. They ordered tests to see if I had an accumulation of B12 and all tests came back negative for any excess B12 in my system, except for my B12 levels. Of course they are >2000. But, several of the docs that I saw this week have mentioned my levels, and said that I have too much B12.
When they say that to me, I instantly know, they do not know what they are talking about and everything they say after that, I just don't trust. One even said I don't need daily injections! These are hematologists! They claim to know about PA. Which brings me to the other thing they said. 2 hematologists and 2 doctors said I do NOT have PA. Today again, one said none of my tests lead them to think I have PA. They say I have B12D but not PA. Yet I had a positive IFAB test (see image below), and I feel my blood tests show enlarged RBC's. (See Images Below) Please note the MCV, MPV, and Monos Absolute numbers, they represent low RBC count and enlarged RBC's. Low MPV shows a bone marrow issue, where your platelets are smaller than normal leading to aplastic anemia. The doctors are ignoring these results. But when you look at everything as a whole, it says PA to me. But I did have breast cancer at this time too and was getting radiation. and they ignored the results too. No one has ever mentioned them to me. I found them myself and when I ask about them, I get brushed off like yesterday and today. That isn't that bad they say.
When I left the hematologists office yesterday, I lost my balance getting off the table and fell into the wall and she tried to catch me. I straightened up and said, something is very wrong with me, I don't care what you say, and I walked out. Hobbled out LOL, I must have looked like a maniac. I was so upset.
I guess my question is, Do I have PA or not? And what is the difference of B12d and PA except for severity of symptoms? What is leading them to believe I don't have PA?
Needless to say, they have sent me into a very distressed mood. They have me questioning myself and I feel like I am back to the, it's all in your head, gaslighting. I thought someone had finally found the answers and B12 has helped me 75% but there are still things wrong with me. LIke my left foot is always very swollen and painful up my left leg. That is what led my doctor to run my initial B12 test. But, the hematologist yesterday said it could be a blood clot, and now I am going down a whole new rabbit hole, to a vascular doctor, as they think the blood flow and oxygen aren't getting to my foot due to my heart???! More confusion. I said to this doctor, B12D and PA cause less oxygen in the blood, do to enlarged RBC's and fewer RBC's, causing less oxygen since RBC carry oxygen to everything. That is when I showed her my MCV, MPV results. I even told her that my legs feel very weak when I lean forward or bend to pick something up or climbs stairs. And my calves are painful to touch, especially when I cross one over the other. That is when she said, I have to be honest, I don't think you have PA.
My heart does flutter and sometimes makes me feel like I have to cough. But PA does that too. doesn't it?
Anyway, I am confused, so if anyone can make heads or tales out of my results I would be so very grateful. If you all tell me I don't have PA, I will believe you. But I still have B12d and that causes the same symptoms, right? So how does one know the difference? Severity? Length of time?
As I was writing this, my SIBO test just came back as negative. I guess I should be happy. So I have no idea why my abdomen hurts so bad when I bend. Except adhesions from 4 surgeries? Also making it painful to swing my legs forward to walk. 😔But I guess not everything is PA related. I did have a doberman rip my abdomen open so that could be the issue there. It's just all so overwhelming and confusing. Or maybe I have Subacute combined degeneration. No one will even entertain that possibility.
I just can't take this rollercoaster anymore. I've been on one since I was 23. I'm now 60 and still don't have answers.
These results are from an endoscopy last month. My other results I will post in a reply. I can't thank you all enough for all you have done for me over the past 6 months. 🦋💙🦋 I hope I made sense.
DIAGNOSIS:
A. Duodenum, biopsy:
- No significant pathologic change.
B. Stomach, body & antrum, biopsy:
- Fragments of gastric antral and oxyntic mucosa with mild chemical
gastritis/reactive gastropathy.
- H. pylori micro-organisms are not identified.
C. Hiatal hernia, biopsy:
- Fragment of squamous mucosa with no significant pathologic change.
Written by
EllaNore
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Unfortunately they are correct about the IFAB test:
"Important: A vitamin B12 injection within 48 hours of testing and, in some cases, within one to two weeks of testing can interfere with test results, so this test should either be done before treatment or at least a week or more after an injection."
So a recent injection within 1-2 weeks of testing may invalidate the test result. It doesn't mean you do NOT have PA, just that the test results cannot be 100% validated if there was a B12 injection within 2 weeks before the test. I'm not sure why they seem convinced you dont have PA - the test could be a false positive but it might not have been, its basically just inconclusive/invalid, you cant make a PA diagnosis either way based on it. It neither rules out PA nor confirms it. Is there some other reason they are sure you don't have PA?
"I even told her that my legs feel very weak when I lean forward or bend to pick something up or climbs stairs. And my calves are painful to touch, especially when I cross one over the other. That is when she said, I have to be honest, I don't think you have PA. "
Well, those are a good description of my symptoms too and I'm fairly certain mine are from B12 deficiency.
However, your MCV is not coming down much nearly 6 months into treatment, I would wonder what the haemotologist have to say on that?
You have a lot of other health issues going on though so I don't want to jump too far to putting everything down to B12 deficiency, could well be other factors involved that need investigation. I gather that you saw at least some symptom improvement with B12 injections so B12 deficiency must be part of the picture? It just might not explain all issues.
Thank you Technoid! You are so right. These are my conclusions as well.
this comment of yours is exactly what I was thinking.
However, your MCV is not coming down much nearly 6 months into treatment, I would wonder what the haemotologist have to say on that?
What would that mean????
why hasn't this come down or improved with daily injections sometimes even more? I don't get a chance to ask all these things I get flustered and rushed. I have so many other symptoms too, which I have stated many times here. They are just say things so matter of factly. This is what we say and that's that. They could say, we can't rule out PA, but you definitely have B12D. Why do they just say you DON'T have PA. I don't see why they are saying I don't have it. My IFAB test could have come back negative too and been questionable. So are they really reliable tests at all? I don't feel they are. They don't want to believe a positive test, but I would have to accept a negative one. I guess it doesn't really matter anymore.
"The test is classified as highly specific (>95%): if tested positive the patient will be deemed as having auto-immune Pernicious Anaemia. However the test has a low sensitivity (50-70%) which means that a negative result does not rule out Pernicious Anaemia."
So if you get a positive IFAB, and its more than 2 weeks since your B12 injection that is conclusive that you DO have PA (with 95% certainty). BUT if the test comes back negative, it doesnt mean anything because PA patients test negative around 50% of the time. Martyn Hooper I believe only tested positive on his third IFAB test.
So, again, if positive its decisive to diagnose PA, but if its negative, it doesnt rule out PA.
If the test is done within 2 weeks of a B12 injection the whole thing is a wash and you can't conclude anything from the test result either way.
Thanks. But it still leaves the muddy waters of the fact that I had injections before my test. It seems a bit contradictory. Is it >95% or 50-70%
I don't see why B12 would make it a false positive. I can see a false negative since B12 is supposed to help it and could mask it. But to have a positive even though you injected seems even more positive to me. To be positive through B12, seems like it is strongly positive. I don't get it. I guess it really doesn't matter. I just need one fricken doctor to work with me and be definitive about SOMETHING! For petes sake! what is wrong with me then?? why is this so difficult?
yep, day before would definitely invalidate the test. It's not necessarily a false positive - the result cannot be validated at all due to possible interference from the injection. So the result doesnt mean anything either way.
Right! But where does that leave me? I don't know. One day at a time I guess. I still question those MPV tests. As they have not improved since daily injections.
Apologies but my eyesight's not good enough to read your test results.
If your MCV is not coming down then there might be something else besides b12 deficiency going on.
Do you have any folate results from past few years?
Both B12 deficiency and folate deficiency can lead to high MCV and macrocytosis (enlarged red blood cells).
Have you asked your doctors what else besides B12 deficiency could cause high MCV?
"I don't get a chance to ask all these things I get flustered and rushed"
Have you considered writing out in a short, polite letter what you want to say and handing it over during appointment or sending it to doctor before the appointment.
Yes, thank you SB. I posted my folate test after the others so it's at the bottom. I've only had two and one is normal and one is high folate. One result was 17.7 and the latest was >24.8 the range is 2.6 - 20I've only taken one tablet in my whole life and it didn't make me feel very good. Maybe because I wasn't deficient. I took it after these tests.
That's also a very good idea to write things down. I did do that once and it worked. I should do that again. I also forget and I get flustered. So writing it down and handing it to them is an excellent idea and I'm going to do that today. Thank you again. It's just so great to have all of you guys help me get my head together. This all just gets so overwhelming and when your brain doesn't work right in the first place it's just gets to be a little too much.
I’m so sorry you’re ohaving so many problems with your surgery EllaNore, especially with your complicated health history. I agree with SB that a letter might help and understand how dealing with surgery’s gas lighting can be so very frustrating and stressful.
If it’s any help, this is what is detailed on Macrocytic anaemia on Page 52 of Dr J Chandy’s book, (free online chapter by chapter but I had it sent to my surgery, after which they took things more seriously) :
…………….
“Before the second world war, there were four principal presentations (medically recognised classifications) of B12 deficiency.
The following classification is based partly on Chanarin’s work (1990).
1. Megloblastic Anaemia (presence of megaloblastic bone marrow precursor cells). Requires bone marrow aspiration, presence of anti intrinsic factor and anti parietal cell antibodies, and typically, low serum B12/low serum folic acid/lowHb%.
3. Macrocytic anaemia (macrocytic red cells MCV >100fL appear in the peripheral blood).
4. Vitamin B12 deficiency (nutritional cause). “
………………………….
As I also understand from the BMJ, NICE guidelines, UKNEQAS, etc, your neurological symptoms, TOGETHER WITH HIGH MCV, plus IF test result, require that you should be getting B12 injections every other day loading doses for neurological symptoms until no further improvement…….………..
Pages for professionals on PAS site, plus links below on the correct treatment regime:.
* BMJ Research Document: bmj.com/content/349/bmj.g5226 (Summary only but GPs can access full document behind a paywall) :
*. It states bottom of page 4 ' under, 'How is Response to treatment assessed':
“once treatment is given blood levels will inevitably increase but it is the clinical condition of the patient that is paramount:
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."………
Treatment AlertNeurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections (even if B12 is within normal limits).………
.* Misconceptions About B12 Deficiency :B12 Deficiency:
Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and without large red blood cells - stichtingb12tekort.nl/weten....
B12 Deficiency and Intrinsic Factor - (I.F. Can Be Negative and Still be PA) stichtingb12tekort.nl/weten... …………
……………
As I understand it with my foggy brain, you have neurological symptoms, large red blood cells and a positive IF test, so it is puzzling why they are making so much fuss about treating with a cheap life saving treatment !!
Thank you so much for all this info Polaris and for your kind words. My loading doses were one injection a week for 3 weeks. LOLOLOL That was it! and one injection a month after that. I feel I DO have the enlarged RBC's but my docs don't think it is worrisome. I have so much info to go over and figure out what I should maybe print out and give to my doctors. I will have days of research from this. it's mind boggling but necessary to help myself. I have purposefully gone 4 days now without an injection as of today, to see how I feel and just in case I can get a new IFAB test. My feet are already tingling and my big toe is numb and my fingertips are a bit tingly. My brain is not too bad. But I did go to bed at 7:30 last night. I think I will be my own guineapig and write down my effects each day that I don't take B12. I do feel like maybe I can skip a day or two sometimes but other times, I just cannot. I don't know why some days are worse than others. When I read all of this, it just amazes me that docs haven't read this stuff. one can have major symptoms without being all that low on B12. Mine was 221 to some doctors that is NOT low at all, to others it has been not too low but low enough to call it B12d. sometimes I feel like maybe I should stop taking B12 for a long time to see if I revert to crawling on the floor again to prove to my docs what happens. Thanks again Polaris. Have a good day!
I live in the US and LabCorp is used by many Physician's offices for testing. I had 2 Ifab test, the 1st I was unsure about the time lapse after my last b12 injection. The 2nd test was almost a month after my b12 injection. Both tests were positive and both very high.Test 1. 49.9 (0.0-1.1) 04-07-20
Test 2. 73.4 (0.0-1.1) 10-07-20
I had concerns about false positives so I called the Immunoassay Dept at LabCorp. I was told that the testing assay they use is not affected by b12 levels even though their published pre-testing information suggests that testing should be at least 48 hours after your last b12 injection.
You seem very knowledgeable in these areas and I was curious about your opinion on this. Thank you.
This is very interesting jimmel196. Technoid is very knowledgeable and I hope they can answer this. I did not get numbers on my test results like you did. I just got the word positive, No numbers. Thanks for asking this!!
I am not an expert on the anti-IFAB test but from what I've found on it online, all these tests warn that an injection within two weeks may invalidate the result. This reminds me of the B12 serum test I did, at which I was reassured that my supplementation would not have affected the result, something I now know to be false.
Of course it might be possible they use some special, more advanced test which is not affected by B12 injections - so it would be great to know more and get some references about that. I would be skeptical of their reassurances until information is provided that backs it up. As you say :
" their published pre-testing information suggests that testing should be at least 48 hours after your last b12 injection."
I expect you just talked to someone who wasnt aware that injections can affect the results of the test, at least thats the simplest explanation until sources that confirm otherwise are surfaced.
I just called my lab. Mayo clinic lab, and they said they only give a negative, positive result no numbers and that He doesn't know for sure but the literature says b12 injections 48 hours before a test can give a false result. So my lab really didn't know what % chance there is for it to interfere. I asked is it a 5% chance or a 95% chance B12 will give a false result. He didn't know.
Thank you so so much Nackapan. Exactly, WHY did they even run the test??? I didn't know about not injecting before until after the fact. I did ask for it, so I guess they did it because I asked. But they should have said not to inject and wait a week. At that time, I would have done that. But not anymore. what if I wait a week and it comes back negative? Who do I believe? I don't trust this test at all. I guess my other tests results don't really show PA except for the MCV MPV, monos absolute. they are clearly questionable. But my symptoms surely showed signs. I have large numb patches on my legs and feet. What else causes that? Pins and needles, confusion! All the cognitive issues. It doesn't matter. You're right, we know our bodies.
I'm so sorry for your aggravation too and thank you for your empathy. I just don't get it. This doesn't have to be this difficult. We do know our bodies. B12 is helping us and that is what I am going to continue doing. I guess I had better rule out heart issues though. PA would answer a lot of spinal issues though. Can you have Subacute Combined degeneration (SCD) with just B12D and not PA? and if I don't have PA then why do I even have a B12 deficiency? I mean what caused it? My grandmother had injections and died of stomach cancer, my cousin had stomach cancer. Her siblings have thyroid cancer. All these things are tied to PA. Am I mistaken? I feel a lot of things in my history lead to PA.
You're the best sleepy bunny! Thank you so much! I will read all of this and print out what I can for the doctors. The doctor that was standing in for my doctor yesterday was very nice and very gentle when she said she didn't think I had PA. So I gave her one of my little cards that I made and I asked her if it would be okay if I gave it to her and then she could look at some of the references on there and read about it and maybe we can learn a little bit more together. And she was very nice and said yes. So maybe I could print out some of these links that you sent me and see if they would like to learn with me about this. I think there's a good chance maybe they would. I probably owe that hematologist the other day an apology though. I just didn't expect it. I didn't expect them to reverse everything I had just been told and take it all away from me. I don't think they realize how important an answer is after decades and then to have it taken away. If I do have a blood clot I would owe her a really big apology. For saving my life. Thank you so much sleepy bunny for these links!!
Thank you so much sleepybunny. I will check it out. All she said was that she didn't see anything that made her think I had PA. I was just so surprised that I didn't even know what to say or what to even ask her. I was taken by surprise and now that I think about it, I should have asked what makes her think that. I did however ask about the MPV etc and she just didn't think it was that high. I'm sorry but high is high. I thought. I did give her that card I made in hopes that she would do some research. She even said she would make a copy and put it on my regular doctors desk. Even though he said he doesn't know enough about B12 and that he can't help me with that aspect of my medical care. They said yesterday he will see me for stuff he knows about but I guess not this.
I feel you anxiety and hear your frustration and just want to give you a hug. I cant say I understand the test results so will leave them to others to explain.
What are they doing to investigate the possibility of a clot ? Are you still waiting for an appointment in the vascular clinic ? Has anybody carried out a doppler scan ? It could be muscular pain due to your B12 deficiency but needs to be investigated ASAP !
It is like dealing with a load of *loody idiots - does it matter if PA or a B12 deficoency either way it needs treating. Like myself you are aging and stumbling about and probably frightened of falling. To add to everything else you have elderly pets that you love and need to care for. For the consultant to see you stumble against the wall and not act is beyond belief - or is it look how many of us are on this site pleading for help.
My hematologist ( a lead hemo in London ) told me she knows little about B12 deficeincy ! When I questioned her as to why she said they all specialise in different things and B12 wasn't her specialitys - I stood there thinking to myself well your a great help you daft mare.
I have no faith in them anymore and despite my many other illnesses I try to avoid where possible going to see them and now self inject. My balance and cognitive issues have improved. My foggy head which was put down to fibromyalgia has gone. My mood and balance has also improved and I can now function throughout my day. You know your body and you know something is wrong so keep the B12 going in.
I have seen that many arrogant imbaciles over the years I have taken things into my own hands and now do what I feel is best for me. I forgot to say the numbness in my lower limbs albeit not gone is much better.
Big hugs I know how you feel and its very deflating. 😘 💐☕🍫
Thank you so much Jillymo! I know everybody here knows exactly what I'm going through and that helps so much. And I'm sorry to feel sorry for myself. But I was cruising along thinking everything was great. That I was getting better. That I was getting to a point that I could tolerate whatever didn't go away completely. I thought I was cruising along with all the answers and then wham they just took it all from me. It's caused me to question myself and be confused.
This cracks me up.
I stood there thinking to myself well your a great help you daft mare.
I'm sorry it's like this for all of us. I wish somebody would come on here and read what people write on here so they can understand more about how frustrated we are and what they need to do to be better at their jobs. It's their responsibility they took the job they should do it correctly. However maybe they are maybe there is something wrong with this leg that's not due to pernicious anemia. But 40 years nobody's been able to find out what that is. But there is an issue and I just hope someday they find what it is. One way or the other. I thought I knew now and they're taking it away. But you're right what difference does it make if it's B12d or pernicious anemia? They have the same results.
Anyway thank you so much JillyMo for the hugs and all the kind words. I'm grateful to you and everybody here so much. Just knowing that there's some place to turn for support is everything to me and I'm sure to so many others here. This is the only place to come for sane support. 🦋💙🦋 Sending hugs back to you.
The reason you feel supported on here is because we have all been in a similar position to where you are. My left leg and foot were so bad I were having guided injections in it and have a wardrobe of shoes I simply cant wear. Since frequent B12 injections I no longer need to attend the hospital for the guided injections !
I find some of these Drs and consultants so *loody patronising. The neurologist I saw ask me what I were doing there and what I expected form the consultation - I should have replied 'thought I would just popin for a cuppa and a chat' and when he asked what I expected from the consultation the only thing that sprung to mind was a rudy miracle.
He was totally dismissive of my B12 symptoms and without discussion he labeled me with Functional Neurological Disorder which was on the copy of the letter sent to my Gp - I was furious. Thats what you call a prize 🐷 and I now have a case against him.
Keep your chin up, do whats right for you and allows you to function safely. 😘
Absolutely! that's why I come here because I know everybody here has been through what I've been through and they completely understand. I'm so sorry that we've all been through all of this. It's very frustrating when they write things on our medical reports that completely skew what other doctors think of us. I'm so glad that you have a case against him. I wish you all the luck with that. It's just crazy. I was watching a commercial for children with cancer and rare diseases and everybody had doctors and caregivers surrounding them with support and understanding and I thought to myself they can smile with their problems and feel positive about it because they have positive support and people swarming around them with care and attention and medical attention and we have nobody to listen to us. No doctors nobody except for ourselves. And I felt so guilty for feeling sorry for myself when there's kids out there with cancer and other rare diseases. But then I realized that they don't care because I'm old. if I was a child they would care more. It's a terrible feeling to feel so obsolete so unnecessary so ignored. But we do matter. we matter to each other on this forum. You all matter to me.
I feel that too written off because of age or simply just a too complicated history. The politicians would say its our fault for living to long ! All lives matter and we deserve a quality of life.
I have never heard of a Doppler scan before. It seems to be an ultrasound with Doppler technology to monitor the flow of fluid and movement in one's limbs. They did say they were going to send me for an ultrasound so maybe that's what I'm going to get a Doppler ultrasound? I'm going to ask them. Thank you so much they've never done an ultrasound on my leg before maybe they will finally find out what's wrong with my leg. I've been dragging around for 40 years and it got so much worse with the B12 deficiency. Maybe This is a flooky thing that will lead to a long-awaited prognosis. I guess I just better continue taking all the tests they sent me for. It's just so exhausting. I guess I'm very lucky to even have medical coverage to cover this all. I guess I should stop feeling sorry for myself and be grateful.
I have sticky clotting blood and suspected a clot in my left upper thigh. They did a doppler which was a hand held thingamajig they ran up and down my leg. Your not feeling sorry for yourself you just needed others for support the same as I and many others on here.
Sometimes we just need to let those pent up feeling loose.
No they didn't find a clot but I went on to have heart failure. The sticky blood condition ( APS ) is not curable but treatable.
All though this is not funny it shows how incompetent our medics can be. I was diagnosed and confirmed with heart failure in A&E.
Because they were admitting me I mentioned I were having an endoscopy in two days time. The young Dr treating me wrote it on the top of my notes assuring me if still in hospital they would ferry me across by ambulance to have the endoscopy.
Some daft nerd saw endoscopy written on my notes and instead of admitting me to cardiology put me on a gastro ward ! 😱
Gosh I am so sorry you had heart failure. That had to be frightening! I hope you are safely being managed now? Doctors are flawed people like the rest of us, even though they don't think so. I guess if they didn't have an inflated ego, there would be no one confident enough to cut us open and fix things. and we just let them, not even thinking about it. doctors have drug addictions, alcohol addictions and all kinds of other issues just like anyone. Yet we put our blind trust in them. That is scary!!
At the time it was scary but can see the funny side of it now.
With regard to our medics not being flawless indeed that is true but it goes to show they are not gods and should treat their patients with the dignity we deserve. Iused to come out of consulting rooms in floods of tears but not any more - I now call a quack a quack. 🦆
absolutely! They should, I was definitely not giving them an excuse. They are insensitive egotistical jerks!! and make me cry all the time. Nice talking with you too Jillymo! Thank you so much!
"should treat their patients with the dignity we deserve"
I agree Jillymo but there were many times when I wasn't treated with dignity.
I remember when I had filmed some of the strange movements in my body to show neurologist thinking it would help him but my brain fog meant I couldn't remember how to operate the camera and he snapped at me.
For any UK forum members who haven't been treated with dignity, have a look at the thread I started on Patient Safety recently. It has lots of useful links for those who've had bad health experiences.
I'm sorry you were treated that way. And it's easy to get flustered in there when you're feeling rushed and anxious especially when we can't think quickly anymore. 😔
same thing happened to me re London haematologist . I was silly not to realise I guess I should have looked at one who mentioned B12 in profile . I have too much B12 and when I asked him why he shrugged 🤷♂️. Did you find a haematologist in the end who specialised in B12 ? Thank you 🙏
I'm so sorry Tiggywoos. Are you injecting B12? If you are injecting B12, your levels will be >2000. They don't seem to grasp that and I just don't know why. If someone did not have B12D or PA and their b12 levels were high, maybe then they should be suspicious, but not if you have B12D/PA. You can not OD on B12 and what you don't use, you pee out. They should know this simple fact and don't. I have not found a hematologist that knows what they need to know about this. this is my 4th one in 6 months. My fill in doctor, who is ordering vascular tests for me, said that my doctor wants me to see a B212D/PA specialist. I can't find one anywhere in Iowa that knows what they need to know. they all say the same thing. It is just stupid. The second they say I have too much B12 and don't need to inject daily, I shut down. I have no faith in them whatsoever. I don't trust anything they say. That is why I come here. For the real answers.
I see you have some other posts I did not see. Forgive me for not knowing if you have B12D or PA?
you’re so kind taking the time to reply . I don’t inject and I haven’t been diagnosed with PA or B12 deficiency. I came on this site as I’ve always been a bit suspicious of my elevated B12 results as I don’t supplement and eat little meat . I do have rheumatic autoimmune disease but the other symptoms I have don’t really fit into that box. I have Erythromelalgia (burning feet) and other B12 deficiency symptoms . In the while of the UK it looks like there are only 2 haematologists that have an interest in B12 and I doubt if they would be interested in an elevated result . They are both the other end of the country to me . I have considered high dose supplement to see if it helps with symptoms .
I also have little faith in them as they run so so many tests and even when some come back low or outside range they don’t do anything other than repeat tests ! I originally saw a pain management anaesthetist in London who gave me ketamine injections for feet but it didn’t work so he referred to haematology (who did nothing ) to see if they would perscribe something or diagnose !
It’s the merry go round I can’t stand !!! I’m a bit of fraud on this website but it’s so helpful and people like you are so kind ! X
Hey that's OK. You have a B12 issue, you are just trying to find an answer for yourself. This is a likely place find it. There doesn't seem to be a lot of elevated B12 info out there if one is not supplementing. I read you had Thyroid tests that are borderline low. that darn borderline is such a pain in the ...... I have levels that are borderline as well, as you can see. So I fall into cracks. That is truly my life's story. It is actually an old family joke. But really it is not so funny. It has made my life very confusing and made me question myself for most of my life. It is hard to live with. My MCV MPV Monos absolute are only a little high so "they" don't think I have PA. And want to rule out my positive IFAB test due to injecting B12 before the test. So ya, borderline is a hard place to live. I'm so sorry you are living there too. Maybe you should have your liver checked and maybe do bloodwork to rule out any kind of leukemia or other blood disorder. I do not drink alcohol. Never did. Not to say I have never had a drink, but I just don't care for it and it makes me feel very bad. But, I still have blood work that says I have liver issues that when I google it it points to alcohol abuse. Several tests come back as alcohol being a cause. How can that be? I don't drink. so it is all so confusing and mind boggling. I wish I had an answer for you. But if your doctor is concerned, the only reasons for elevated B12 is what I mentioned, so why haven't they tested you for those things? But it does sound like you have some B12 D symptoms. How is your folate, and iron and D3?
I googled why would someone that is not taking B12 have high levels. The answers aren't great. Like liver disease, Myeloproliferative disorders like leukemia. Have you had other blood work done that would lead them to other blood diseases like Leukemia? Those are the only reasons I could find. sorry if they are not pleasant, but that was all I could find. Everything else says B12 usually does not back up in the system and gets eliminated in urine. So you do not have PA or B12D and you are not taking supplements? Do you have blood work you can share? I should go look at your other posts.
You are very knowledgeable and yes anaesthetist referred to haematology to rule out myeloprolifer disorders . What came up was low lymphocyte subsets which he thought was caused by hydroxychloroquinine. Also low C3 complement and anaemia. Said see you in feb and repeat . Anaesthetist was most cross as he wanted him to give me an asprin substitute as my feet responded to a one of large dose . He also wanted him to investigate high B12 . I now have an open referral to any haematologist I like but not sure I can face explaining it all !!! I’m sure you understand 😞
Thanks. Everything I know, I learned from links everyone has shared here. They know so much more than me. Aren't lymphocyte subset things that show elevated white blood cells? Elevated WBC mean you are fighting an infection. I remember google those results from my own labs. I wonder things like, have you ever been bit by a tick where maybe you have lyme disease or something like that, that no one has considered. I had Lyme disease that was left undiagnosed for 35 years. I was bit in the neck by a tick and got a terrible painful red area that I just thought was what happened when you got a tick bite. I had never heard of Lyme disease at that age. They tested me for arthritis and said I either have RA or Lyme disease. They put me on antibiotics to see if it was Lyme. No conclusion was ever really made. (what's new) But here I am with several autoimmune issues. Lyme disease is considered an autoimmune issue. I am just grasping at straws but if you have some hidden infection or autoimmune issue, that is one that is possible. Lyme disease can affect the heart and act like RA and cause fatigue and all sorts of body aches and things. Another not so understood autoimmune disease.
The lymphocytes were low not high but fascinating you mention lymes as I had a bullseye rash 4 years ago . When mentioned to dr recently said too late to do anything now which does make sense as I know you need antibiotics at the time . Ironically my white count is always low and even when I had cellulitis of leg I didn’t mount an inflammatory response despite being in hospital for 4 days ! I’m complicated I think ! Thank you for sharing and I’ve googled long Lymes before and many symptoms are like autoimmune you are very right !
Dang Tiggywoos, I can't believe you had/have Lyme. It is not too late. I was bitten at 18 years old and not found for 35 years. It was too late for symptoms I guess, but if you still have a low lying infection, what difference does it make for them to treat it? Gosh I can't believe you had a bullseye rash. That was the only autoimmune issue I could think of that would cause those test results. I thought I was really grasping at straws.
it’s mad but I didn’t even think about it until you said .. got the bullseye rash in the September 2018 then cat bite December 2018 then all autoimmune stuff kicked off February 2019 . Funny how things go on for ages and we don’t link up the dots !
OK, this is insane!! I was bitten by a cat in my knuckle rescuing it. It's tooth went into my soft knuckle locking the infection in and my hand swelled like a grapefruit, I had to have surgery. I was supposed to wake up without a hand or at least my index finger on my left hand, but I woke up with it all still intact. I can't believe this. It caused my tendons to shrink in my arm and I had to wear a brace that pulled my arm straight slowly to stretch my tendons, as my arm shrunk up from infection. My arm works great but my finger does what it wants as the tendon to the finger was detached so I could bend it. OMGosh, are you my long lost twin?! LOL
sister from another mother !!! Can’t believe this as my cat bite went through to the bone and the swelling was so bad I couldn’t walk . Took 6 weeks of antibiotics and hospital stay to clear infection but by then the scar tissue had tethered itself to the tendon and had shortened . Back of leg still has a dent in it !! We had rats 🐀 in the attic at the time so I’m sure the cat had eaten a rat so goodness knows what the state of cats mouth was like !! Honestly could write a book !!!
Wow that is so crazy. Cat bites are the most infectious bites you can get outside of a human bite. And the reason cat bites are so dangerous is because their teeth are very pointed and tapered and as it goes in and comes back out it seals up and seals the germs in That's what I was told anyway. It makes total sense. Yes a cat bite is extremely serious. I could also write a book. Well it has been really something chatting with you. I sure hope this leads you to an answer though seriously. Maybe it does have something to do with Lyme disease or the autoimmune disease that it caused. We have a very similar past that is crazy. If you find an answer I sure would love to know.
Very interesting Sleepybunny. Thank you. We should call you 'the researcher'. You find all kinds of great information. I have heard of this. My cat bite infection was over 40 years ago and I was treated with some pretty strong antibiotics and had surgery, so I think that would have caught that. But the Lyme disease, that was left untreated for 35 years. I believe that may have affected my immune system. I've been reading the info you posted links to and have printed out and highlighted many symptoms and things that I feel pertain to me and will take them to my doctors with a nice letter. My GP is a very nice doctor and the whole office is very nice. He is the one who found my B12D. Even though he doesn't think he can treat me for it anymore he still said he'll be my doctor for other things. But I'm still going to leave him this information in hopes that they will further educate themselves. I seriously think that I could have the subacute combined degeneration. That makes the most sense to my symptoms over the last 15 years. I'm still reading those links. But so far those symptoms really make sense to me.
Thank you sleepy bunny. I'm going to have to take a lot of time and go through all of this information. I tried last night but I fell asleep. But I'm going to go through every bit of this information. Thank you so much!
I am unable to find any consultant who speccialises in B12 be it a hematologist or other wise. It seems as if unless you find a Dr or consultant who has the condition themselves they havn't got a clue.
I also look at their profiles and found a gastrologist who mentioned B12 on his profile but it's a 67 week wait to be seen.......so pray for me too. 😘
I find it very deflating that we have traveled all the way to London to see suposed specialist and here we are still grabbing at straws.
I was seeing a Reumy at Guys but due to covid they didn't want patients from outside of London coming to the hospital so now I am on a long list waiting to be seen locally.
Lymes is not a nice illness so dont underestimate it. It's as if we are all like a load of headless chickens going around in cirles getting nowhere and very few answer's. 😡
Omg same happened to me I was supposed to be going to Bath but GP wouldn’t refer as we were in covid and he said too far to travel . Trouble is with these autoimmune illnesses it takes so blooming long to get a diagnosis (that then gets changed to something else ) by the time you think you know what you’re dealing with other symptoms have crept in to muddy the waters ! Headless chickens 🐓 on a crappy rollercoaster !
Ah Bath ! That's where I am stuck on the waiting list to be seen by a gastrologist. I used to attend the lovely old mineral hospital but it has now been closed which I feel criminal as it had so much history behind it------neither the less the consultant I were under (now retired ) was crap.
there was a really good rheumatologist apparently at the hospital but he’s gone since lockdown to another trust . I think lockdown was a great excuse for certain consultants to make a lot more money 😞
Do you know his name if so PA it to me. I have a very complicated medical history with more than my fareshare of autoimmune conditions. I recently had a local neurologist try and push me aside by labbeling me with a functional neurology disorder ! So on top of feeling like 💩 I now have to battle my case with the ombudsman.
I had some loony in Bath try and stop my blood thinning meds telling me I no longer had antphospholipid syndrome. What a an absolute idiot when it is a life long condition and I had paid private to see the founder of the disease. He could seriously have put my life at risk had I not have educated him. 🤬
its exhausting i know. it's like the left hand doesn't know what the right hand is doing !! just wish Drs could agree sometimes or at least bother to communicate with each other. I think i've realised doesn't matter how much you spend or how qualified they are the communication with each other is poor
Yes it does feel that way. It's very very frustrating. We're not the only ones with complicated histories. If a doctor can't even handle somebody with multiple autoimmune issues then why are they doctors. We don't need people to tell us we have a cold or the flu. We need doctors who know how to treat complicated cases! we are human beings and we matter. It all makes me so angry.
Hi Ellanora, so sorry and quite upsetting to read your post. Like Jillymo I am sending you a big hug. All I can add is that you have a lot of medical issues ‘going on’. And there will not be a quick fix at the moment. I fear you may miss bigger health issues eg blood clot or a heart issue because you (and our) focus is on PA and our injections, quite rightly though…I am not minimising this. How would you feel taking a step back, write a list of 3 of your main concerns and make an appointment with your GP and discuss just 1. Then tell him clearly that you will come back to discuss the last two. As no 10 min appointment can explain issues to any of us properly. It will break the problems down and keep you focused on one thing at a time. I am 66 now, and laugh at myself as I have so many things going wrong that I chose very wisely what is the most important at any given time. Please keep us posted and I hope this helps you a wee bit x
Thank you so much MissGuineapig. Thank you for the hug. You're right I was upset at first but coming here makes me realize that maybe they're not sending me down a rabbit hole. Maybe I better take all the test they want me to take no matter if they're stupid or not. It's just getting very draining to keep driving an hour one way to the doctors and back to do test after test that come back with no answers. It's a really good idea to try to focus on the most important things which I was trying to do, but they can never find anything wrong. And it just keeps leading me further and further down roads that lead to nowhere. And I thought when they told me I didn't have intrinsic factor and that I needed to have B12 injections for the rest of my life that I finally found the answer. My doctor told me that I don't have intrinsic factor. Even before the IFAB test the doctor that found the B12 deficiency told me I don't have intrinsic factor. I never heard of those words before. I never heard of b12d or intrinsic factor. So I googled it and found this forum. And all the symptoms and everything I've been reading was exactly what I had. Everything pointed to PA. So that's why I thought I had PA because they told me I did. And then I took that Ifab and it came back positive and now they're trying to take everything away from me. But I guess it's a good idea to let them test my heart and make sure I don't have a blood clot, because that leg was smashed in a motorcycle accident 40 years ago though. However, that leg has been the one thing I was focusing on all theses years. I will keep trying. Thank you so much for your ideas, kindness and support. 🦋
I owe you an apology. I did not know why I was going to my 4th hematologist or what to expect. what I didn't expect was for my initial diagnosis of PA to be dismissed. It took me very much by surprise and I was deeply affected by this. I have spent more than 38 years trying to find what happened to me after I was put on Lupron injections at 23 years old. I have a very complicated case. My abdomen was ripped open by a Doberman and I went through many years of surgeries. Eventually leading to Lupron injections for a year and finally a histo. I have had issues ever since. a motorcycle accident caused further complications. Where my left leg was slammed between my bike and a car. I hit that car at 45MPH and my leg took the entire hit. I spent 40 years trying to find what was wrong with it. I have been told many degrading and gaslighting things from ego driven doctors. I have been poked in the stomach and told i was just fat and if I lost the weight my leg would feel better. I had kidney failure in 2006 do to meds. I was put into menopause at 23 years old. what condition do you expect my body to be in? I used to hike the sierras and was an award winning photographer. My weight is medication and injury induced. I thought I finally had my life back. And in one session, you took it all away. That devastated me. I should not have stormed out and I'm sorry. If you want to learn what PA sufferers really go through, please visit this forum healthunlocked.com/pasoc
Also one other thing. If you look back on my blood work, you will see elevated MCV, MPV and monos absolute. No one has mentioned the lack of RBC and the enlarged RBC. Why is that? and why after 6 months of injections has my MCV not gone down? Why haven't any of these levels improved? Why isn't anyone taking these results into consideration? and why was I sent for an IFAB after my loading doses were started. I should have been sent for that before treatment. I am not the doctor, you all are. I now know a lot more than I did then. I had never heard of B12D or PA. And Dr. OOOO was the one that told me about intrinsic factor and that I didn't have any. I did not know any better. I am not the doctor. I was told something and I ran with it. And I researched it night and day and read everything I could find to educate myself. I now know more than most doctors do about B12D. And as far as daily injections, if you never suffered the cognitive decline and neurological effects of B12D then you will never understand needing B12 every day. Please visit pernicious-anemia-society.org and please update your education on it. For the sake of your elder dementia patients. In 1850's to the early 1900's B12 was given everyday until symptoms subsided. Not until money and greed came into the picture did they limit us on B12. B12 is water soluble. It does not build up in the body in the case of B12d. The high levels are not 100% utilized. We don't know why, but you guys should.
Just a few tips: you can't have too much B12 because it's water soluble, if you have too much in your system, it will be pushed out via urine. Also, h pylori definitely plays a part in all this. Research the effects of h pylori (I have it) on the intrinsic factor, which is what allows B12 to be absorbed into your system. Also, take note, if you take folic acid tablets and you drink coffee (or tea, chocolate), then you might as well just throw the tablets away because caffeine inhibits your system from absorbing folic acid. I wish the Drs. would've told me about that. I occasionally have a little chocolate because it only has a little caffeine compared to coffee or tea, but have now given up tea and coffee (gave my coffee maker away). Don't know if you know this or not, but Folic acid will "mask" a Vit. B12 deficiency. I went to have a blood test for all my Bs. I told my Dr. that if she couldn't order a blood test for all my Bs, then didn't need one. She ordered the entire B panel. However, three months earlier when I had labs drawn, they forgot to include my gender and age, keeping the lab from including several facts. Here's how I now look at it. Let's say your body is a brand-new car and for a while, it runs just fine, but all of a sudden it won't start. So you have it towed to a mechanic who tells you that the problem was the battery is dead. So you tell him, you've had 4 batteries installed in a matter of a few weeks. Then the mechanic says, yes I had to install a new alternator because it wasn't charging the batteries. So the point is if in a line of things that must work to make the car go, one thing goes bad, then the car will not work. So if your levels say you are deficient in folic acid, that's anemia and quite possibly megaloblastic anemia (my issue), and your Vit. B12 levels are probably also too low.
Check out these books if you like: Pernicious Anaemia & Vitamin B12 Deficiency by Martyn Hooper and Could It Be B12 an Epidemic of Misdiagnoses by Sally M. Pacholok and Jeffrey J. Stuart. Hope this helps and good luck.
Yes thank you MrJustatip, all very good information. So you have megaloblastic anemia? Were your MPV, MCV levels high? I feel this is what my problem is but none of my docs even mention my elevated MPV, MCV. I did have an Hpylori test and it came back negative. I had an endoscopy and they found a hiatal hernia and Fragments of gastric antral and oxyntic mucosa with mild chemical gastritis/reactive gastropathy. I googled it but forget what it all means. LOL. Hpylori does run in my family, my brother had it at 12 years old. Now it makes me wonder, because of family history of stomach cancer and B12 injections, if my brother is suffering B12D and doesn't know it.
Great analogy with the battery. LOL. I can relate to mechanics. But that is exactly the way it is. Also, they have to eliminate (many) things to finally find the correct diagnosis. That can be quite difficult if the problem is say.... wiring! LOL Same with us. Our wiring is very complicated.
My folate is actually elevated and they don't mention that either. I don't take it because I took one tablet and felt pretty darn awful. I also gave up coffee but drank decaf anyway. Caffeinated coffee made me feel very anxious and not well so I stopped drinking that decades ago. I have since gave up coffee altogether as it hurts my stomach. Chocolate also makes my tummy hurt and not feel too great. So thankfully I have cut way back on that. And only have a bit from time to time. But I read somewhere that B12d can cause cravings for sweets. Not sure if that is true. But since my injections, my sweet cravings have gone down by 85% at least.
Thanks again for the tips. I hope your PA is under control and you are feeling OK?
MrJustatip, regarding the coffee I think you need to look at the research again :
"A study on the effect of caffeine on homocysteine levels published in "The American Journal of Clinical Nutrition" found that caffeine intakes of up to 870 milligrams per day did not affect blood levels of folate, vitamin B-6 and vitamin B-12. This is about the amount of caffeine in 8 or 9 cups of coffee."
9 cups is a bit much but 2 or 3 should not do you any harm, may have health benefits and is not likely to affect your folate. Watch the milk and sugar if you dont drink it black though
Only think I would add is that drinking tea has not affected my folic acid. I love tea, fully caffeinated and drink loads. As I have just shared a few days ago on a separate post, my last blood test showed very high folic acid and I have now reduced my dosage vastly. It just shows how different we all are though and how complicated this all is. 😀
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need some help AGAIN, THANK YOU ALL , I AM VERY GRATEFUL FOR FINDING YOU ALL:)
B12 Deficiency and PA have exactly the same symptoms and effects
Visit to hematologist for pernicious anemia
Help with understanding test results, please?
