Hi everyone I wrote a post but I don't know what happened to it. I'm writing for a friend and for me. I've recently been diagnosed with thick blood and I have to wait till December 2nd to get a secondary test to make sure it's still thick or not. My friend was just diagnosed with pernicious anemia and they've really been putting her through the ringer. They're giving her conflicting information. They told her that too much B12 will cause her blood to get thick and activate the clotting Factor. Is this true? I have thick blood. Is b12 making my blood thick to have it everyday? When I do a search for this it says that B12 does the opposite when you have pernicious anemia and it thins your blood. So what is the correct answer for this? Is B12 making my blood thick?I love my friend and I want to give her the right information but her doctors are contradicting everything I say to her. And everything that I tell her I got from here or the pernicious anemia Society. I don't want to confuse her and I don't want to be confused myself. I know some of you have thick blood. What caused it? What came first the thick blood or the B12 injections? So does too much B12 make your blood thick and activate the clotting Factor? Is that what happened to me? Searching that, I get very contradictory information. When they started her loading doses I believe they gave her three injections, one a week for 3 weeks, and then they went to every other week but now they've changed her back to every week because they said her B12 hasn't come up enough. How could she be on injections and her B12 not be greater than >1500 or >2,000? How could she have had four or five injections and her B12 still be low? And also why are they even testing her B12 anymore after starting injections?
They're also going to do an endoscopy and biopsy and she told me that that was the only way she could get diagnosed with pernicious anemia is by a biopsy. According to her rheumatologist. I told her that I don't think that's true. That she can have a blood test called an IFAB test and find out whether or not she has pernicious anemia. I do believe she still needs to have an endoscopy but they're giving her incorrect information or she's relaying it to me incorrectly. I would like to help her and I'm hoping that somebody here can help me straighten things out for her and me
Questions: can you diagnose pernicious anemia without a biopsy?
Does too much B12 activate the clotting factor in your blood and make your blood too thick?
What is the appropriate loading doses for PA?
Thank you all so much for always being so helpful. 🌸
Ps she also has Lupus and Thyroid issues.
Thanks again!
Written by
EllaNore
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Thank you very much Nakapan. I appreciate you chiming in. That's what I'm looking for people to give me their opinion on this because I think it will help my friend. And it'll help me in the long run because it's very frustrating to try to help people when their doctors are contradicting everything you say. I can't blame them for wanting to believe the doctor over me because I'm not a doctor. It's very hard to help others when doctors are giving them bad information.
Ok i asked two questions to Google. #1 does injecting b12 daily for pernicious anemia cause thick blood?
This is the answer I got: No, injecting B12 for pernicious anemia does not typically cause thick blood; in fact, the primary goal of B12 injections in this condition is to increase the number of red blood cells, which would actually thin the blood by improving its ability to carry oxygen.
Key points to remember:
Pernicious anemia causes thin blood:
The main characteristic of pernicious anemia is a deficiency in red blood cells due to poor absorption of vitamin B12, resulting in thin blood.
B12 injections correct the deficiency:
By administering B12 injections, the body can produce more red blood cells, effectively "thickening" the blood back to a normal consistency.
However, potential concerns:
High doses of B12:
While very rare, taking extremely high doses of B12 could theoretically lead to side effects, including potential issues with blood clotting.
Consult your doctor:
Always discuss any concerns about B12 injections with your healthcare provider, especially if you have any pre-existing medical conditions
End first quote
Then i asked simply, can b12 make my blood thick?
This is the answer. Begin quote: "Yes, too much vitamin B12 can increase blood clotting and cause blood clots.
Pernicious anemia is a type of anemia that occurs when the body can't absorb enough vitamin B12 from the intestines. B12 injections are used to treat pernicious anemia, but high doses of vitamin B12 can cause serious side effects, including: blood clots, heart failure, low potassium, and fluid buildup in the lungs.
Other side effects of high doses of vitamin B12 include: acne, face redness, insomnia, headache, and palpitations.
The body only absorbs as much vitamin B12 as it needs, and the excess passes through urine.
---- end quote
When they say high doses, are they talking 1000mcg daily or 10,000 mcg daily?
I do have thick blood. My mucus is thick and my lungs suffer from it and my potassium just tested slightly low. But that just happened. My potassium had never been low. And it was only 1 point low. I can see why my friend is confused, as I am now too. So which is it? All of this uncertainty is really starting to affect me. I've been to 5 appointments in Oct and I have 8 more appointments coming up. All useless tests giving me no answers and getting me nowhere but tired.
Is my blood thick from the b12? Or is that something that Lyme disease did to me and Lupus did to my friend? And now she is scared of b12. She said when she gets her injection the first day she's completely wiped out. And by the third day she feels good and then by the 5th or 6th day she feels like she needs more. I actually have never heard of anybody getting wiped out after their B12 injection so if anybody else gets affected by their B12 injections like that it would be nice to know so that I can help her.
I had a feeling she had B12 deficiency PA after I learned about it myself. I've always known she had lupus but when I learned about lupus and PA and everything else, I had a feeling she had PA. It took a while but she finally got tested and sure enough she has it.
So at least I knew enough to know just by her symptoms. But now her doctors and AI are giving us confusing information. Contradictory in fact.
Thanks for any help. I know it's a lot to read. So I appreciate any help. 🫂
Thank you. I would tend to agree with you Having spent an unhealthy amount of time reading scientific and advocate material about b12 deficiency and it's treatment it very largely does not align with the Google answer quoted.
Yes I would love for her to sign up. I have tried for months now to have her come here and ask the questions that she's asking me. I don't know why she won't. And I just got fed up enough last night that I asked the question myself so that she could read the answer. I don't even know if she's going to come on here and read the answer. Hopefully it's helped other people though and not make things worse. I do apologize for being too wordy and repeating myself my brain doesn't work very well. I tend to do that.
I know the feeling when you know someone you care about has a problem and you really want to help them fix it but they block your attempts to do that. I guess there are some people who are so invested in the doctor gods they can't conceive that anyone else could be right and the doctors wrong. It's frustrating but there's not much you can do, they're too scared to step outside of their comfort zone. I can't blame them because we are all different so you will just have to be there if she needs you.
Thank you, Espeegee. Yes I believe she's too scared to accept some of the things that she reads. I will always be here for her. She'll reach the point where she stops believing them.
EllaNore - may be an issue with the word 'causes'. There is a high correlation between PA and Lupus so may be that someone is interpreting the correlation as a causal relationship, where as the causal link to sticky blood would actually be the development of multiple auto-immune conditions.
Thank you gambit62. And of course we both have multiple AI conditions, as most of us do. She thinks it is the b12 though, and I'm worried she will not want to continue treatment, as she said it makes her not feel good. I tried to explain reversing out but she insists it was the shot. I need to reassure her that the b12 is not going to hurt her. I mean to be honest why is she blaming the b12 and not the lupus? She seems determined to blame the b12 . This is a difficult condition to explain to anyone. Especially, when everywhere we turn they are filling our heads with misinformation. Weird but I feel a little defensive about b12. I feel I need to defend it as it saved my life.
People with certain autoimmune diseases such as systemic lupus erythematosus (SLE) are at increased risk of having Hughes syndrome.
Does lupus make your blood thick?
Overview. About 1 out of 3 people with lupus produce an antibody that attacks certain blood-clotting factors, which can cause the blood to clot easily.
Thank you jillymo I was hoping that you would chime in as I know you suffer from this. I actually don't have Lupus. My friend does and she does have thick blood, but I don't have Lupus, supposedly, but I do have thick blood. I'll find out more in December.
Professor Graham Hughes was the founder of Hughes Syndrome, he has now retired. When he left St Thomas's he opened a private clinic the 'London Lupus Centre' which I attended..........
Hughes Syndrome was first described by Prof Graham Hughes in 1983. Hughes Syndrome is also known as 'Antiphospholipid Syndrome' (APS) and is also commonly referred to as 'sticky blood'. Hughes Syndrome is a major cause of: DVT.
Antiphospholipid syndrome (APS) is caused by the body's immune system producing abnormal antibodies called antiphospholipid antibodies. This increases the risk of blood clots developing in the blood vessels, which can lead to serious health problems, such as: DVT (deep vein thrombosis) stroke. heart attack.
Thank you very much Jillymo, 😊 I go on Dec 2 to retest my blood, if it is still thick they will refer me to hematology and may or may not put me on thinners. I think this is what is making me so fatigued. I really don't know.
They are researching new treatments.........Research biotech company Oxford and west coast US. Also now thanks to long COVID they are identifying proteins responsible.
There is a Hughes Syndrome Forum on here, click on hub and search for it.
Thanks so much. I will do that. Im hoping she will read this. I sent her the link. I remember seeing something about proteins in the blood. I didn't pay attention.
Thick blood? What's that? It could be a variety of things, but none, I suspect, have anything to do directly with B12.
A positive IFAb only detects about 50% of PA cases.
As for 'activating the clotting factor', the clotting process is inordinately complex, and activating coagulation won't give anyone 'thick blood'. It's much, much worse than that.
Go and research a thing called MEGALOBLASTIC ANAEMIA. It is a condition that causes your red blood cells to enlarged and become very thick. It is almost always fatal. (Eventually!) The cure for megaloblastic anaemia is….. wait for it…… B12 injections! We spent two years campaigning and working to win our GP over largely with info from this forum and when they agreed, I was so exhausted, I burst into tears embarrassingly in front of the Doctor. They did blood tests before the loading doses and blood tests after and miraculously the condition which they said they had no idea how to cure, was gone and my husband’s blood went back to normal.
Then came the second challenge which we never won. He is only allowed one injection every three months….. Some wonderful friends told us to stop relying on Doctors and take charge of our own health. They paid for our first box of B12 and injection needles etc and taught us how to inject. That was over a year ago, we inject every second day and have never looked back! B12 cures thick blood we have the blood tests to prove it! ❤️
Yes yes yes this is what I'm trying to tell my friend. This is the truth right here what you're saying granny 2024. This is what I'm trying to tell my friend. But she doesn't believe me she believes her rheumatologist who scared her to death. However, I have been injecting B12 everyday for 3 years now and my blood is still thick so I'm a little confused about my particular condition and why it's thick like this and why they keep ignoring my mpv's and my MCH and all those other things that point to enlarged blood cells which is megaloblastic anemia. So I don't understand why my doctors are not seeing this but the only treatment for it is B12 so here I am 3 years into it injecting B12 every day and my blood is still thick. What do I have to do to make it thinner? More time? Inject four times a day? This was what I came on here with that question for the correct answer and this I feel is the correct answer. Thank you very much granny 2024 this is what I need my friend to see.
EllaNore. I would strongly suggest that you get further medical information and assistance. My husband had enlarged red blood cells which our GP informed us was “thick blood”
I researched it and found out it was megaloblastic anaemia as opposed to pernicious anaemia they are two different conditions. He had a bloodtest before his injections and after and the difference in his red blood cells was dramatic. (From enlarged to normal)
If you have not had the same result, after getting B12 injections (we initially did it every day and now a year later every second day.) I would caution you to get further information and help from a medical person.
My experience is from observing what happened to my husband and cannot be applied to you, until you actually know what your diagnosis is.
Thinking if you and hope you find a solution soon… xxxx
Thank you very much granny 2024. I'm trying so hard to make my docs hear me. They are making me wait 90 days to test my blood again. I'll know more in Dec. To be honest I don't even trust doctors anymore. They have diagnosed me with everything from multiple myeloma to Sjogren's and then took it all back and said nope you don't have any of that. They have completely confused me. But I do know that I trust this forum more than I trust any doctor. Thank you
There is a reason for the long gap between testing for Hughes as follows ........... A diagnosis of APS can only be made after 2 abnormal blood test results, with at least a 12-week gap between them. This is because harmless antiphospholipid antibodies can sometimes develop in the body for short periods of time.
As for your friend you would be better of guiding her to the Lupus forum and also the Hughes.
Yes, thank you, it takes 90 days for RBC to regenerate so they wait 12 weeks. not that it hasn't been thick for three years already if not more, but whatever. They are in control. I have sent her all the links. Except Hughes. I can lead her here but I can't make her partake.
I too had megaloblastic anaemia for years. When I flagged it with my GP he said ‘oh, that’s just your B12 , nothing you can do about it’ What? Really? I think not! With my own research (and this forum) I found out that that my three monthly B12 treatment was insufficient and was the cause of my megaloblastic anaemia. Fast forward to today, no longer have megaloblastic anaemia. (I self inject daily)
During my first endoscopy, a biopsy confirmed my Pernicious anaemia. I was negative with the intrinsic factor antibody test and positive for the parietal antibody test so, the biopsy was sufficient to confirm my PA diagnosis.
There are no negative side effects from supplementing B12 - end of.
Its a vital substance & if we do not get enough we die. We scientists do not use terms like "thicken blood" because it has no biological meaning. The body is a hugely complicated & integrated system of anatomy, physiology and biochemistry. Thats why it takes 10 years to learn enough to function as an adequate physician.
So PLEAAAAAAAse stop this pointless series of comments.
I think you will find it was Antiphospholipid Syndrome that was being questioned in the post put on by EllaNore who at present is being screened for sticky blood......... betterhealth.vic.gov.au/hea...
Thick blood is a common term used for polycythemia vera which is often used amongst physisions!
I agree with your comment that there are no negative side effects from supplementation of B12.
I have Hughes Syndrome (thick, sticky clotting blood) and inject B12 on a daily basis.
I do not believe this. That is my entire purpose for posting this so that my friend can see how a statement like that by a rheumy can be very bad!! And very wrong!
No I don't believe that. I believe there is no adverse reaction to B12 I believe that B12 does not cause thick blood I don't believe this question at all. That's what I'm trying to prove to my friend is that her question is wrong her rheumatologist is wrong his answer is wrong B12 does not hurt you B12 does not cause your blood to get thick I'm trying to prove to my friend that her rheumatologist is giving her the wrong information. That is the purpose of this whole question. I presented it the way her rheumatologist presented it to her I don't understand why there is a communication here. I do not believe B12 causes any of what I'm asking here. I would like to know why my blood is thick still but I don't believe it's caused by the B12 I believe it's something different. But that is the question she presented to me saying that was the comment her rheumatologist said to her. I am asking the question the way it was presented to me by her by her rheumatologist so that I can tell her the truth so that you can all come on here and prove him wrong. The point of this question is to prove her rheumatologist is wrong. I need you to tell her the truth I need everybody to come on here and say B12 does not make your blood thick. The other thing is that if anybody out there Googled what her rheumatologist said to her these were the answers that she was given this is why she's scared because when she Googled what her rheumatologist said to her those were the answers she got therefore I posted those questions and posted those answers that people can correct her rheumatologist and give her the correct answer. I've been trying to explain to her for months now everything she comes to me and tells me her doctor say to her she doesn't believe me anymore. I had to come on here and ask the question that she presented to me in the exact way she presented it to me in the way she said her doctor presented it to her so I could show her that that is wrong. And it's working. Because it is wrong this is not my question this was her rheumatologist question and her question to me this is not my question
It's the way you are wording things that is causing the confusion. 🤔
The way you answered my post made it sound as if you were questioning my reply when infact you are agreeing. Perhaps what you should have put on your post was ' can too much B12 cause thickening of the blood.'
Granny2024 raises another issue that is worth consideration.
Good luck with your blood results, as for your friend she needs a good rheumatologist who actually understands the condition.
Ellie try and keep replies short else others get confused -- put it down to the PA. When you get your blood results, if hughes syndrome get on the other forum it was they that helped me.
I note you used the term 'Multiple Myeloma'. When this condition presents, it can sometimes be seen with a huge excess of plasma proteins, and this WILL give 'thick blood' [horrible term.] Waldenstrom's Macroglobulinaemia is the classic presentation of extermely high plasma protein [with a Macroglobulin]. It's a condition all of its own, and whilst there's no obvious connection between B12 and these conditions, there's nothing stopping someone from having both. That's just sheer bad luck.
Let's stop talking about 'thick blood' and be more scientific and specific, please, or I'll have to take by bat home and keep quiet. I realise some folks might prefer that.
Feel free to post your blood work, and I'll try my best. If you want to PM me instead of posting for all to see, that's OK too. Post away! Post as much as you like.
If there is a test you would like to see let me know, I'm sure I have it. I'm getting lost in my screenshots they all look the same. But I have hundreds and hundreds of tests so if there's something you want to see just ask me I'd be happy to share
These look good except my rbc which vary every time of course. My mpv is Always hovering at the high end.
When I told my rheumatologist and showed her pictures of my swollen face and legs below my knees she ran further tests. Something called an alpha2hemoglobin or something. ???
This is the last one I hope. This is what one of my docs wrote in my chart. "Copper, folate, erythropoietin, reticulocytes, iron, total iron-binding capacity, iron saturation, ferritin, complete blood count with differential, lactate dehydrogenase, metabolic panel, peripheral blood smear, and inflammatory markers were all reassuring. Your B12 was elevated consistent with your injections. There is no evidence for an underlying anemia that is not well managed by your current interventions. I would absolutely like you to continue to follow with hematology. You will see Dr. Dela Cruz at your follow-up who is excellent and very thorough just like Mattie T ARNP. I am confident that she will provide you a good analysis of this lab work as well and do any additional testing that is needed.
Your IgM is elevated which is concerning for multiple myeloma or lymphoma however the remainder of your labs are not directly consistent with this. I would like to repeat some lab work and wait for your CT chest to decide what to do next we have had an MRI, PET scan, bone marrow biopsy, or referral back to hematology/oncology. I will reach out to oncology/hematology as well to get their opinion.
Your rheumatoid factor, aldolase, CK, CRP, and sed rate were normal. Your ANA initially positive but on further evaluation by the pathologist with reflex, there was no autoimmune disease identified on this panel. Specifically you are negative for Sjogren's disease based upon your ANA with reflex. However, your ANCA was positive raising concern for an underlying rheumatologic disease. I would like to refer you to a rheumatologist to get their opinion on this at University of Iowa if you are okay with this. I would also like to repeat some lab work as well. I can also test for Lyme disease antibodies if you'd like."
Appointments were made and canceled stating my tests didn't warrant further tests. And here I sit months and months later. With no life.
I've had a good trawl through your blood results, and I can understand most of them, but some are a bit beyond me. At least they are provided with reference ranges.
I note the carboxyhaemoglobin level is slightly raised. This is normally seen in smokers, or folks working in an atmosphere where there is inadequate ventilation and fumes from burning materials. An example is a disposable barbecue being used indoors. That's extremely dangerous.
Likewise, putting something in your mouth and setting fire to it, and inhaling the smoke, is not without risk! [I'm sure I don't need to lecture you on the risks of smoking anything.]
The IgM result is a little alarming at first glance, and I wonder what's going on there? To me, that would definitely be a case for a Haematologist's opinion, if there's no identifiable cause. Nowhere on your reports did I see anything referring to whether the IgM was monoclonal or polyclonal, as that can make a big difference.
IgM in significant quantity can give you 'Thick Blood' [shocking term] because it increases the plasma viscosity, but that's another story.
Your CBC data isn't particularly striking, to be honest. I believe you mentioned that your MPV tends to be raised. Unless the sample is taken and processed immediately, the value of the MPV figure tends to be suspect. Platelets in the EDTA sample tend to swell.
Yes, this has been very helpful. I can't thank you enough FlipperTD. I quit smoking cigs in 2010. Stupid habit. I guess my lungs will have to pay the price for smoking weed. Like all meds, there are risks. I don't drink so I got that going for me.
I am going in for an appointment right now but wanted to say thank you so very much and if I can do anything for you please ask. I'm a graphic designer so anything you need let me know. That's how much this meant to me for you to do this. Thank you so much! I will go over this again and again. Thank you. 😌
I'm glad it's been of some use. If you inhale smoke from anything there will be carbon monoxide [CO] in the smoke, and that has a very high affinity for Haemoglobin, which is why a small %age of CO can kill. It does eventually clear from the Hb but it's a slow process. Oxygen therapy can help in extreme cases, but that's not you from what I read.
Thank you very much FlipperTD. I shouldn't smoke anything but I can't take meds as my body reacts to so many things. I had kidney failure in 2006. No one knows why. A reaction to something. Anyway, if I'm not at risk of dying, I'm good. Dec 2, I get my blood tested again. We shall see. Then she will send me to hematology yet again. Another few months im sure. Thank you again. I don't know what a G&T is. But good luck with it.
G&T=Gin and Tonic! If you're in the parish you could call in for one. Oh, no, you don't drink. Sorry. I'm pleased that Haematology is involved, as they are the experts.
I'm sorry if this question has upset you. But this question the exact way that I wrote it here was the way it was presented to me by a very scared PA patient who just got diagnosed and whose rheumatologist is telling her very wrong misinformation. Therefore I had to State the question exactly like it was stated to me in order for it to be an accurate question and answered correctly. I am not claiming that B12 causes thick blood. That would be a rheumatologist here in California. These are not my words they're the words of a rheumatologist. So that's why I presented it the way I did. The way it was presented to me so that I could give my friend the correct answer to the wrong statement from her rheumatologist. I'm sorry you guys are upset but by the time this is all said and done hopefully you won't be anymore and neither will my friend who's very scared right now. How dare a rheumatologist say that to her. How dare my hematologist say some of the things that they said to me here in the United States. I have been told horrendous scary things. That I've had to come to grip with and figure out all on my own. My friend is very scared right now because of misinformation that a rheumatologist with more than 10 years experience as you state has said to her. These are not my words these are the words of a rheumatologist
Dear Bellabab, Im sorry you feel we are making pointless comments.
my scientist GP told us that my husband’s enlarged red blood cells was “thick blood” and that they did not know the cause or the solutions. I quote: “It is one of those things..”
It took me a medically uneducated Noob to come to this forum, read and research to find out the diagnosis which was megaloblastic anaemia and it took me and my non medical friends alongside this forum to get us on the right path and get regular B12 injections, so be kind to us unqualified non scientists, with a bit of persistence and research, we are able to save lives…. 😁❤️
I'm sorry you think this is pointless wizard but I don't think my friend who's sitting here scared to death from things that her rheumatologist has said to her. This question is to help a friend who was presented with this exact comment who then Googled the comment and got these answers and is now scared. This is not useless. For people who may have heard this and believe it to be true will now know that it's not true. In my opinion no question is useless and it makes somebody feel like it useless is not right. To my friend this is not a useless question. To my friend this is very helpful to her. She's new to pernicious anemia and she's been given the wrong information I need it for her to see the right information therefore I posted her questions her answers so she could get the correct answer from the good people here who I knew would be smarter than all the doctors and who could tell her the correct answer. I have to admit when I asked these questions the ones that she asked me and got the answers that she got they were a little bit scary for me too because I'm going through it right now. But I don't believe B12 is making my blood thick at all but my doctors do and so to hers. No question is useless. If it's the wrong question the right information will come out of that. There is no bad question there is no useless question because from a useless question the correct answer will come out and it will help people and I'm hoping that this helps her
I was referring to the comments, not the question. I personally go with there is no credible evidence that B12 has ever caused any adverse effects. I am willing to take the risk of being the first.
I haven't had a chance to read what everybody's written here but it's been brought to my attention that I should change the wording of my question. Instead of asking if B12 causes thick blood I should change the word causes to something else. The reason that I'm not changing that question and I'm sorry if it's causing an upheaval but it was presented to me that way. So I Googled what I was presented. I was told B12 causes thick blood. So that's why I Googled those particular words. If it's causing a problem it's something that we should know about and know the true answer to because it was presented to me that way that's why I'm presenting it that way here. Because if somebody else is asked that question or told that question and Google's what I did that's what they're going to find out. I have never heard that B12 causes thick blood ever not in the 3 years that I've been doing this. nobody has ever mentioned it. Suddenly my friends rheumatologist told her B12 causes thick blood. Either she misunderstood the question and asked it to me that way or he's an idiot. But that's why I presented the question the way I did because that's the way it was presented to me. if I change the question it will no longer be the correct question. So I'm sorry for upsetting anybody but that was the question that needed to be asked by me and I needed an answer for it. Changing my question doesn't help me. Right now I have vertigo so bad that if I change my position right now I will throw up profusely. So I'm not feeling very good. But I will try to answer all of the responses here. For me questions like this need to be asked because if that's the information that's out there being incorrectly presented to us it is not the right information and the correct answer needs to be said and my friend needs to read this post to find out that that question is absolutely wrong and that her rheumatologist is wrong. So however you guys feel about this post my friend needs to know about it and she needs to hear all the negative things that that question has presented to this group. Because now she's walking around with a rheumatologist scaring her. This is the very reason I asked this question. Because when she presented it to me I threw a little bit of a fit to her and now she's mad at me because when I told her that B12 does not cause your blood to get thick we had an argument. She wants to believe her doctor she probably never even wants to speak to me again right now. Because I tried to correct her rheumatologist that is why I asked this question. And I hope it helps others like it's helping me and her. In my opinion B12 does not cause thick blood. I need for her to see that by her doctor telling her wrong information, this is what happens. Now she can see how confused everybody is right now about what her doctor said to her. This is what we go through in the United States all the time with stupid doctors who do this to people. tell them things like this. I think it's very important that I came on here and ask the question the way I did because look at what it's done. This is what doctors are doing to us.
B12 does not make you blood thick.
And I'm very sorry if anybody is upset about this post but the truth needs to come out. There's doctors out there spreading misinformation and scaring people.
These are not my words they are a rheumatologist words told to his patient who just got diagnosed with pernicious anemia. I think he's trying to Gaslight her into not taking more B12.
Again I'm very sorry if anybody's upset about the way I worded the question but that was the way the question was worded to me. And the truth needs to be told.
I hear your frustration, I understand what you’re trying to say. When I was unwell a long time ago, I also went down the rheumatologist route to get an explanation for my body pains and numbness. My rheumatologist concluded that I have fibromyalgia and stop my high B12 self injections. Today, I’m glad I disregarded those opinions as I’m slowly recovering and healing.
It was the more B12 that made the difference to my recovery with some lingering symptoms to this today. Mainstream medicine gets it wrong many times. A haematologist also told me to cut back on my B12, I again disregarded those opinions. I am way better off today following my own gut instincts than following those so called professionals/specialists. I have PAS and this forum to thank for supporting my healing.
Just insist that your friend join this forum, to click on the links, read the books by Martin Hooper, Dr Pachalok etc, read as much as she can and for her to make her own conclusions.
You have done your best to help, let her make her own decisions from this point onwards. Just as we have all done here. She will then be grateful for you helping her to get connected with the correct advice.
That is wonderful advice Gonewiththewind1972. Thank you very much. Yes this forum is my only friend when it comes to PA. I'm so grateful to have it. I just wish I felt better myself. My life is passing me by and I'm at a loss as to how to help myself anymore. 😔
I hear you. On this forum recently, it was mentioned that making your own kefir has beneficial effects on the whole body, especially with gut healing for many reasons including inflammation, autoimmune diseases such as PA, Crohn’s (which I have) IBS, and many other chronic diseases. I’ve just ordered myself a beginner’s kit (including the grains) to try and see if consuming kimchi will help me with my health recovery. I will always be grateful for the advice given on this forum. There’s no harm in continuing to make positive changes to our overall health.
Please don’t give up on yourself, healing takes a long time and never give up when you feel let down by the world. There is much confusion with medical advice that can seem overwhelming. Baby steps to a healthy life, with time to process and heal.
You are so sweet. 🫶 Thank you so much. I bought kifir but I couldn't quite get used to it. I'm sorry you suffer from so much. It does get overwhelming but we can not give up. A true diagnosis would help so much. Good luck with your kit. I hope it helps your gut. I will try to drink my kifir 😉 Continued healing to you.
Correction, it was kambucha I just bought and can't get past the taste. Not kifir. I don't know the first thing about either. 😉only what I've read here.
Oh my. I seem to have missed all the excitement. I shall throw in my belated 2 cents anyway.
I could only find one reference to excessive Vitamin B12 being linked to blood clotting, on a website belonging to what looks like a private Vietnamese hospital chain.
The qoute reads (partly):
"Too much vitamin B12 can also activate the blood coagulation system, increase blood clotting"
The article claims to have been written by a doctor of endocrinology but the claim is not referenced and in multiple years of reading scientific papers on B12 deficiency treatment, including those from leading experts and researchers in B12 treatment, I have never come across anything that suggested that excessive B12 could cause blood clots.
I bring to bear Hitchens Razor: "That which is presented without evidence, can be dismissed without evidence."
I can only speculate as to why this rheumatologist came to their conclusion that excess vitamin B12 causes "thick blood" with apologies to FlipperTD for the use of this unscientific term.
It can be noted that a vitamin B12 deficiency reduces platelets, but when the deficiency is corrected with B12 injections, platelets would be expected to rise (to normal levels). Perhaps this person mistakenly assumes that, since B12 increases the absolute numbers of platelets in this scenario of deficiency treatment, that excess B12 would result in even more platelets being created. But that's a bad assumption and is not how the body works.
Another possibility is that they might be looking at studies of patients with Cancer who have high serum vitamin B12, not from injections but as a side effect of the Cancer. These patients have an elevated rate of venous thromboembolism as per : sciencedirect.com/science/a... .
However such associations are unlikely to be causal - it is much more likely that the high vitamin B12 is just a marker that associates with such serious disease.
The third possibility is that they simply have no idea and are talking out of their rear end.
To my knowledge there is not a single regulatory agency in the world that has set an upper limit for safe B12 intake. This is because evidence of harm from high dose B12 has never been found. If there was so much of a shadow of a doubt about this, you can bet that there would be discussions about this in the tolerable upper limit documents, in standard medical textbooks and in research papers and case studies.
A superb answer technoid. Thank you very much this should help my friend immensely if she comes on here and reads it. If not there's nothing I can do for her but it has certainly helped me. With all the misinformation that doctors give you it can make you question what you really know to be true. They really do break you down and then you start to question yourself. But I know what you're saying to be true and your answer is superb. Thank you very much. 🫶🫂
During Covid, there was a research paper written. The problem that the team were trying to resolve was how to prevent elderly patients, hospitalised with Covid, from worsening to the point of needing respiratory machinery, after which outcomes were poor. They concluded that part of the answer was DMB - a mix of vitamin D, magnesium and vitamin B12.
I honestly can't believe that vitamin B12 would have been included if there was any possibility of thickening the blood and risking blood-clotting - known problems for patients with severe Covid infection.
I cannot now find the copy of this research. Perhaps someone else remembers reading this too ?
I have been self-injecting B12 at about 2 injections a week (or more) since 2016. I have had many many blood tests since that date - but "thick blood" has never been mentioned as a problem. I can't recall seeing it listed as a side effect of B12.
A rare few people seem to have an intolerance of B12, otherwise the main problem when having b12 injections initially is acne-type spots affecting face, hairline, scalp, neck usually. These go after a while generally.
IFab tests can be useful as a positive result would be proof of PA (95% accurate) BUT there must first be an awareness that 40-60% of those with PA will have a negative result. The antibodies have to be active at the time of the test for a positive result. I have had three IFab tests - all negative.
A colonoscopy found two polyps (benign) which were removed and an endoscopy found "patchy gastric metaplasia" and "flattened mucosal pattern at D1 and D2" (duodenum) but once Coeliac disease was ruled out, nothing more was said about that. Worth having done - worth keeping results on record and polyps removed.
Your friend might be a bit confused about information given - I remember finding it very difficult to take it all in as I had cognitive and memory problems (B12 deficiency symptoms). Some of the information I was given by consultants was clearly misguided, some confessed to not knowing much about the condition. Luckily, my GP was much better informed - and where a referral proved useless, would redirect me elsewhere !
Thank you Cherylclaire. Yes my friend has polyps and they are going to remove them and clean her illim for better absorption. I can't remember if she has celiac or not, but she can't absorb B12 or other nutrients I am sure. She has had lupus for a very long time. they gave her three steroid shots a year, which to me, that just covered up or masked her other issues. When she felt bd she asked for steroids and they gave them to her. I feel to shut her up and move on. Yes she is overwhelmed. I probably didn't help matters but I did tell her her docs were going to say certain wrong things and sure enough they are saying those things. So she is confused and overwhelmed. They removed her gallbladder saying it was that. But it was perfectly fine when they removed it. I sent her this forum and the links to everything. I can't do more. Not without getting frustrated and losing a friendship. she is pretty mad at me. Because I got fed up with her not listening to me or reading what I sent her. And still listening them. Anyway, thanks so much.
Let her be mad - she is probably frightened. Too frightened perhaps to not trust what the medical professionals are telling her.
Martyn Hooper, in his book, explains in simple terms the function of the ileum:
"The intrinsic factor produced in the stomach makes its way, with food that is being digested, through the small intestine. This is made up of three parts - the duodenum, the jejunum, and the ileum. Most nutrients from food are absorbed in the jejunum, but iron is absorbed in the duodenum and our friend B12 is absorbed in the last part of the small intestine - the ileum. In the ileum a bit of chemical magic takes place. The intrinsic factor binds to the B12, that by this time has been freed from the food which carried it to the ileum (the food is the extrinsic factor by the way)to make a mixture of B12 and intrinsic factor known as "B12/IF complex". This allows B12 to then enter cells on the wall of the ileum after binding to receptors on the surface of the ileal cells; from there it passes into the blood stream. It then goes on to play its part in producing healthy red blood cells."
So your friend will clearly need a fully functioning ileum. She also will need you - whether she recognises this right now or not.
Thank you SleepyBunny, Yes, I sent her all the links to PAS, HU, and two forums here. One for PA and one for Lupus. I think her thick blood is Lupus, but mine has not been determined yet. But APS seems to be what they are leaning towards. Thank you . I also have to run. 2 doc appoint today an hour away. Hopefully I will be cancer free today for three years. It is my release mammo. After this, no more every 6 month mammos. I can go to one a year. Have a lovely day.
I have contacted the chicago PAS. It is nice to know they are there. It is only 5 hours away. Better than an entire country away. I did not know there were two. I will check ou tthe Nov 9th meeting. Thank you!
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