High Folate with PA terrible GP

[EllaNore]

Hello everyone, Im afraid this might be a little long, but i hope someone can help me. It has been a long and upsetting morning. It started with a 630am ER visit for excruciating groin/hip pain for past 6 days and very hard to walk.

Anyway, I'm confused. Some of my tests came back surprising. I always see on here that you guys say that folate is usually low and that you supplement folate and it helps absorb B12 Etc. But my folate is always high. I just tested it today and it's greater than >24.8 and it's not supposed to be higher than 20. I don't understand why my folate is so high when I have never taken it.

What is it doing to me? Because I am really not feeling very well and I'm just wondering if my folate is hurting me somehow.

I have no doctor to ask. In fact i requested these tests to see where I am with self treatment because I've not been feeling good with that excruciating pelvic/groin/hip pain. Balance issues, and just lethargic. Not really wanting to do much. Apathy i think is a better term.

The pain in my lower abdomen got to be unbearable, I took myself to the ER this morning and was for 3 hours. After the ER i went to pick up my prescription that was called in 2 days ago for my pain meds (only take if in serious pain) and when i got there, I was told my doctor had been out of the office for two days and Id have to wait for him to come back next week!!!!. Well...... that was all i was going to take from this doctor anymore. My doctor is next door to the pharmacy so i hobbled over there and I told the head nurse, my situation. She said my doctor had not been in for two days. And started making excuses. I told her i don't really give a damn about my doctor. He has abandoned me and left me to treat myself with no where to turn for help. I have been treating myself with no help from any of you for 3 years. I have to call YOU and tell YOU what blood tests I need. How dare he just ignore my refill and leave me hanging for what would be 5 days. I told her I'm very tired. I ask you for nothing!! I have given you all the info my doctor needs to learn about PA and he is choosing to not care about me at all. She said we do care about you. I said no you don't!! Tears running down my face. I said I have been treating myself for almost 3 years now with no one to turn to and nobody to help me. How dare you leave me hanging for two days with my prescription don't you ever do that to me again. I said I'm filing a complaint against him. I don't like him and I don't ever want him to be my doctor again. I will not be treated like this by anyone and I walked out of the office. I could hardly walk. I had just come from the ER. I was so angry and I let them have it. I told them I i feel like Iam slowly dying and you don't give a damn. How dare you look at me and see me like this and not care. (I live in a town of 169 people so it's not like I live in a huge City where I'm just a number. My doctor lives just blocks from me.) By the time I got back to the pharmacy my prescription was ready.

I still don't know what's going on with me from the groin pain, but the ER ruled out appendicitis and diverticulitis or any infection with a ct scan. They don't know why I'm in this pain but they gave me a steroid shot in my hip. The reason that I requested all this blood work is because I've been in terrible abdominal pain about 6 days and I thought perhaps I had an infection, perhaps my D3 was low? maybe I had a B vitamin issue other than the B12, maybe folate? I just needed to know where I stood.

So I got all my test results back from this morning and my folate is greater than 24.8. I don't understand why it's this high. But this is what I found on the internet and what it says about it. My folate has never been low it's always been too high.

From Google:

High folate levels may mask pernicious anemia

. In fact, 20% of patients with pernicious anemia have above normal serum folate levels, but up to 10% have low levels.

High folate levels may also:

Exacerbate vitamin B12 deficiency

Worsen cognitive symptoms associated with vitamin B12 deficiency

Promote the growth of malignant or premalignant cells

Some hypotheses for how high folate levels may affect vitamin B12 deficiency include:

Excess folic acid binds to folic acid receptors in the bone marrow and renal proximal tubule cells

High folate levels may mean a vitamin B12 deficiency

Body cells need vitamin B12 to use folate.

‐---------

So my question is if I inject B12 every day then why is my folate so high and why isn't it coming down? and what symptoms is this causing in me? Should I be worried and how do I get it down? It's definitely causing me cognition issues and balance issues. Should I cut down on my B12? Do I need more b12? (1 -2 x a day) Any kind of answers would be greatly appreciated. Thank you so much

Results:

Vitamin D, 25-Hydroxy

Your range 35

Normal range: 30 - 100 ng/mL

I started taking 10,000 daily, 4 days ago, so i think that probably raised it a bit, so was probably deficient

Folate: they always run b12 with folate even though we know it is not necessary.

Vitamin B-12

Normal range: 139 - 931 pg/mL

Your Value >1,500

Folate

Normal range: 2.76 - 20.00 ng/mL

Your Value >24.8

My Mpv still points to borderline macrocytic anemia but my RBC is ok.

RBC

Normal range: 4.20 - 5.40 10*6/uL

Your range 4.46

Previous rbc 4.07

MCV

Normal range: 81.00 - 98.00 fL

Your range 94.6 not bad but still to the higher end

MPV

Normal range: 6.00 - 10.00 fL

Your range: 9.9

This is always this high. This is macrocytic anemia but they ignore this number. It has been high for decades. Way before my PA diagnosis. No one has ever said anything because it is one point below too high, and never flagged But i have every symptom. I thought all this would get better with daily+ injections.

I am at a loss as to how to help myself anymore. Is this as good as it gets? Can anyone offer any help?

I'm still waiting on my homocysteine test that will take a couple of days. I think I also asked for an MMA test.

Still waiting on Iron/ferritin and some others.

Thank you so much for any advice. There is a 6 hour difference in the US and I'm very tired and on meds so if i don't respond that is why. Again, as always you are all very appreciated I don't know what I would do with out you all. ❤️

[Technoid]

Hi EllaNore,

So sorry to hear you were treated like that. 😔

I have difficulty understanding your folate number too but doing a "dr.google" I found "blind loop syndrome": hopkinsmedicine.org/health/...

Might not apply but it didnt seem like the other options made sense and I doubt its a B12 issue at this point.

There's a lot of causes of high MPV, might not be anemia related.

Perhaps FlipperTD has some wisdom to share.

[Technoid in reply to Technoid]

Were you taking Vitamin D before the test?

If you were not we're going to have a stern talk about proper supplementation 😆😝🤣

[EllaNore in reply to Technoid]

Thank you technoid. At this point I just don't know what to think anymore. I'm completely lost. I literally have no where to turn for answersI had been taking D3 50,000 once a week, I changed to 10,000 a day instead of once a week. Then i stopped taking it just because no one was monitoring me or helping me with anything. I failed my Romberg's test. No follow up no answers to why. No concerns by anyone. Just that it is b12d related. I tell them my mpv is 99.9 their answer is.... that's not that high. B12 is the only treatment. But high is high and i have symptoms, but no one is listening to me. So, i don't know what to take anymore. I don't know how do help me anymore. I'm sick to my stomach right now. They have me diloted and a steroid shot and i feel terrible right now. Terrible headache and nauseated and I'm scared. I don't know what supplements to take or anything anymore. I'm lost and confused. Very scared right now.

[Technoid in reply to EllaNore]

Oh dear! We'll try and help as best we can!

D is best taken daily rather than weekly. Think of it as how you would normally get it from the sun, a bit every day is better than almost a week of darkness then just getting a blast of sunlight on Sundays. Levels will be a bit more stable with daily supplementation.

However, you were taking such a massive dose I'm still surprised you were borderline deficient, D can take a while to come up but this makes me think there may still be serious unresolved absorption issues going on. But I do not think the vitamin D level is low enough to explain this kind of severe pain.

Hope you can get to the root of whatever's causing this abdominal pain, what an awful time of it you're having!

[EllaNore in reply to Technoid]

Thank you so much Technoid. I only stopped taking d3 for a few months and started again this week. I also think daily is better. I just really don't know what's happening and neither do they, ever. I know i will never let them give me diloted again. Been throwing up all day/night and shaking. I don't take meds and this is why. Major headache. Nausea. Feel terrible need to get some more rest. Thank you for caring

[mauschen in reply to EllaNore]

You sound very unwell. I would advise you not to take any unprescribed medication including B12 and take yourself to the ER.

Perhaps you are having an adverse reaction to the steroid injection or your adrenal function has been compromised.

You need medical help to exclude all of these possibilities and to investigate your abdominal pain, nausea and vomiting.

Go there and let someone else take care of you. It’s difficult to be rational when you’re feeling so unwell.

Take care!

[EllaNore in reply to mauschen]

Thank you so much mauschen. I'm doing much better medication wise. It took two days to snap out of it. I indeed had a very bad reaction to the pain shot they gave me. Im usually very very very careful, but i was in so much pain, i let them give me a tiny shot. 😒 Never again. I had my friend come and stay with me from next store until I felt better. I thought my head was going to explode. The B12 is harmless. But the diloted was very bad. As for the initial issue. Its still very painful. I will be calling my medical insurance and finding a new provider. I've tried in the past, but i live in a rural area and I have not been able to find anyone that knows anything about how important vitamins are and understand the damage deficiencies cause. Id like to find a natural doctor but this is rural Iowa.

Anyway, thank you very much, 🌸 you were right. I was having a reaction. I told them i had to drive myself home so only give me a very small amount. And that's what it did to me.

[EllaNore in reply to Technoid]

SACD? The er doc asked if i had fibromiasia. I said i have subacute combined degeneration and he asked what that was. So i told him. But if he thought fibro than why not nerve pain from sacd?

I forgot the week before this happened the ribs on my right side were hurting really bad and I couldn't wear a bra. I thought it was from the radiation treatment they said that would happen from time to time for the rest of my life, but what if it was nerve pain and it just traveled down from my ribs to my lower back I just don't know. Thanks for trying I really appreciate it

[Technoid in reply to EllaNore]

Have never heard of "fibromiasia". Maybe he meant fibromyalgia? That's usually just a fallback for when they don't understand what's going on and usually just means they're confused/at a loss.

[EllaNore in reply to Technoid]

Yes my spelling error. Fibromyalgia. But I don't believe in fibromyalgia or at least not to use it as a fallback. I do believe people have nerve pain all over their body because I have it. But instead of calling it fibromyalgia, I would just consider it peripheral neuropathy from B12 deficiency. For me anyway.

[Nackapan]

8I'm sorry you are scared.Also not being listened to .

I'm not sure what diloted is .

If its a stong medication/ morphine lije drug ? it may take a while to leave your system.

All I can add is your groin deep pain needs more investigation.

In one of my daughters case it was associated / referred pain .

She had this pain you describe.

She had spinal MRis and several A and E visits

Short term diazipan to sleep and relax all the muscles on one occasion.

Strong painkillers ect trialled.

A herniated bulge L3 seen.

Resolved on its own.??

I had High loading doses of vit D ( before I was ill with b12 def) a sure sign of an absorbtion problem starting in hindsight.!

The very high doses of vit d prescribed made me quite ill .

G.p didn't understand why??

I still need Vit D and take it with k2 in a spray daily in a much lower dose 3000iu

After a break.

Keep getting seen.

Or get someone to drive you to another doctor .

Good you've had initial scan.

You probably need more to eliminate other things

Hernia

Arthritis

Ect..

Can you see a neurologist?

Only thoughts .

Keep up your b12

Take care

[EllaNore in reply to Nackapan]

Thank your so much Nackapan. Diloted is a major opiode. I will never let them give it to me again. I'm very sorry about your daughters pain. And for your suffering. Yes absorption issues are nothing to mess with. One thing is, I cough a lot because i make really thick mucus and lots of it and can't get it out. Again they think the thick mucus is b12 related. So im constantly coughing and it can really hurt. I've always thought i had a hernia but no one seems to be able to see one. I have many many herniated discs. Major spinal issues. It must be that. My last neurology appointment I failed my romberg's test that's when they did an MRI and found I have terrible spine issues from head to toe. No one takes to me about my results. No follow up. Nothing. I feel very abandoned. Any test i have, I've asked for and was granted except for a middle back mri. But i qualify for that now because it's been 45 days since my neck mri. But I was in two motorcycle accidents and a rollover vehicle accident and have a lot of injuries to my back on top of sacd so I really feel it must be tied to my spine. But I've had 4 major abdominal intestinal surgeries too. So lots to decipher. It sure helps to come here. Everyone is so helpful. It is quite comforting to know your all are here. Even if i can't find an answer, seeing everyone respond brings me to tears. I'm so grateful, thank you!!

[MrsTuft]

Are you relatively new to B12 SI? The body needs B12 to use folate. You can feel worse before better. Hugs.

[EllaNore in reply to MrsTuft]

Thank you MrsTuft. 🌸 No I'm not new. About 3 years now. I inject daily sometimes more, so maybe it's not getting absorbed right? I never take folate because it's high. I think i messed up cutting back on D3 though so im back on that.

[MrsTuft in reply to EllaNore]

My folate has been high for years without supplements, with and without b12 injections. Either I absorb it well, or I can’t use it, or some kind of bacteria inside makes it. I just don’t know. I just get on with doing all else I can.

[EllaNore in reply to MrsTuft]

Good to know. Thank you MrsTuft. So it doesn't give you any problems. That's good. I will not worry about it then. But it does say that high folate can exacerbate b12 symptoms.

[MrsTuft in reply to EllaNore]

I think that’s referring to someone with B12D taking folate which can mask the anaemia of B12D thus making diagnosis difficult and long term causing neurological damage (because you need B12). That’s nothing to do with naturally high folate. I assume my high folate comes from my whole food diet and no difficulty absorbing it.

[EllaNore in reply to MrsTuft]

Mine is naturally high too. I don't take any supplements. Just D3, and daily b12 injections. I guess they supplement foods with it. Not sure i like that.

[mauschen in reply to EllaNore]

Why do you inject daily with B12, especially as your blood results show that you have more than you need ?

Could you have hit a nerve when you self injected?

Do you inject intramuscularly or sub cutaneously ?

[EllaNore in reply to mauschen]

Once we inject, even one time, our b12 levels will never be low again and don't need to be checked. I believe the reading isn't really accurate, as it is only in the blood, not in the tissue, so most of it gets peed out. But they insist on checking it and freak out. It is in the treatment plan that it is not necessary to test b12 levels, but doctors simply don't get it. We only absorb a small amount that we inject and everyone absorbs it differently. For me, any less, my symptoms get much worse. My feet for the first time in over 30 years aren't on fire. And i have pretty bad weakness in my legs. Unsteady, sway when standing abs taking to people. i walk like i have very mild MS is the only way to explain it. and terrible pain. My PA affects my speech and word recall and i find any less b12 and that gets embarrassingly worse. And it effects my emotions pretty badly. So i can't risk letting that get out of control.

How are you doing? How often do you have to inject? I inject SC.

[mauschen in reply to EllaNore]

According to a Haematologist advising my GP, B12 can be stored for up to 5 years!

[EllaNore in reply to mauschen]

Oh Man.... Well, someone can correct me if I am wrong but, I think they are getting confused. The way it works, if you do NOT have an absorption issue like PA, then someone who eats animal byproducts will naturally absorb b12 and store it in their liver, and lots of it. If you become deficient for some reason, it could take up to 10 years to deplete the B12 stored in your liver. But after that, if you can't absorb it, there is no storage and there is no useful B12 in your body, so people with PA have to inject it. Injecting it will instantly raise it to levels that are way above normal. But we are not absorbing/using all of that and most of it is being peed out. So once one starts to inject, doctors should not check the b12 levels as it will always appear high >1500 and never be normal again. So it is useless information that has no bearing on ones condition.

In my case, we think my PA is hereditary so by the time I was 23, I was showing signs of deficiency. Unfortunately no one found it until I was 60. So all of my stored b12 was long gone. And the irreversible damage had already been done. Hope that helps.

[mauschen in reply to EllaNore]

Thank you, I am aware of this however, I posted because this is what we , as PA patients are up against when we go to the doctor with issues such as I did.

My peripheral neuropathy is particularly bad a week or two before my injection (8wks) is due.

My GP wrote to the Consultant Haematologist and that was his answer. Now I am dealing with two doctors without a clue!

[EllaNore in reply to mauschen]

I'm so sorry Mauschen.🌷 Double the dumbness. Double the aggravation. What if you went to a b12 spa and paid to get one in between? I reported my doctor on Monday and am looking for a new doctor. No luck so far. Now I have no way to get my prescriptions filled. I wrote to the US Chicago contact Julie, just now so maybe she can help with resources here. I wish you strength and energy to deal with your doctors. Good luck.

[mauschen in reply to EllaNore]

Thank you!

Unfortunately, in Scotland we don’t have a B12 Spa. I am prescribed my injection every 8 weeks.

I had asked for the possibility to have my injection monthly but this has been refused.

My next B12 is due on 7th March. However, I am suffering with painful , burning feet which my GP has refused to treat seriously.

[EllaNore in reply to mauschen]

Have you thought about self injecting? It is a lifesaver. You would never have to worry or wait for a doctor to control your treatment. You would have complete control over your care. I think you could try once a week and see how you do. Everyone is different so you just go by your symptoms.

[mauschen in reply to EllaNore]

I have had PA for almost 40 years now.

When I was younger, I would self inject monthly then 15 years ago they changed the prescription to 3 monthly.

As time went by, arthritis in my spine gradually became worse. I could no longer twist my body to insert the needle.

I now rely on the NHS nurse to deliver my injection but am disappointed that nurses to longer act as patient advocates.

They should in my opinion be defending our position.

[EllaNore in reply to mauschen]

Oh my muaschen. I'm so sorry about your spine. That's a long time to have PA. They in deed should be supporting us. Have you tried injecting in your leg or tummy so you don't have to twist? I'm assuming you were injecting in your hip? Maybe you're hands hurts too? I know mine do. Well, I hope you find a friend or someone to help you inject more often.

[mauschen in reply to EllaNore]

Thank you, I used a rotating system to inject intramuscularly. My arms, upper outer quadrant of buttocks (no longer recommended) and outer aspect of my thighs.

I have PA not B12 deficiency therefore, subcutaneous injections will not work.

[EllaNore in reply to mauschen]

I also have PA. I've been doing SC for 3 years. It seems to be helping me. Maybe it will help you if you do it more often. I do have to inject everyday day. I have no idea if IM would help me more than SC.

[MrsTuft in reply to EllaNore]

No, that's not the case for me as I don't eat prepackaged foods and I doubt it would make your folate that high anyway.

[EllaNore in reply to MrsTuft]

My almond milk has added calcium. A,D & E and on the back there is more. Potassium, iron.

[MrsTuft in reply to EllaNore]

So that wouldn’t raise your folate.

[EllaNore in reply to MrsTuft]

I know i was just saying how even in almond milk they add stuff.

[Wwwdot]

Hi EllaNore

First lots of hugs and well done for standing up for yourself. It’s tough but necessary sometimes.

I can’t comment on the folate but I do understand and relate to the pain in right hand side of ribs and into groin (right hip) and for me it is also my right foot. I go to see a chiropractor and he sorts it for me as in my case it’s a trapped nerve in my neck shoulder region that’s the culprit - aka tension overload. Might be worth considering as nerves run from you head to toes and it’s a horrible pain usually at several points on one side of the body. In any event a nice massage and some TLC sounds to be needed.

Thinking of you 🤗🤗🤗

[EllaNore in reply to Wwwdot]

YES WWWDOT!!! yes!! It is all on one side!! One wouldn't think they could be linked but i think they are. My foot hurts too. Gets sharp cramp pains but not constant. my neck, my ribs, my hips, my leg, all on my right side. They think trapped nerve so I'm thinking SACD is inflamed and causing problems. I won't take the diloted ever again i know that. I'm sorry for suffer from this. I hope your able to keep it at bay. I think a massage would be wonderful. Thank you so much for verifying that one whole side of one's body can hurt. Pain travels. 🌸

[MorningMist]

I am really sorry that you feel so unwell. When my first b12 test result was 254 and I felt dreadful, my folate was above range at 24 and came down to about 15 after a year or so of injections. You SI daily so maybe a different type of b12 would help or apart from that I understand that omega 3 is also needed to absorb b12 adequately. And maybe you need a while to get your d3 to a good level. That’s a gradual process I believe. Also gastritis can cause really bad low abdominal pain. Hope you find an answer soon.

[Carlosdoug in reply to MorningMist]

Hi EllaNore, just a thought, have you had your hip X_rayed? Arthritis pain can be extremely painful in the groin area. Hope you find a cause soon.x

[EllaNore in reply to Carlosdoug]

Thank you Carlosdoug, the diagnosis came in this morning. They think i have trochanteric bursitis. The pictures of this online show a trapped tendon, so that could very well be. I think the reason i was throwing up and having such a terrible time afterwards was a reaction to diloted. I can't take drugs. Thank you very much.

[EllaNore in reply to MorningMist]

Thank you MorningMist, such a pretty user name. Yes, i waited 6 days to go to the er thinking it was IBS, darviticulitis, etc. When i couldn't stand up straight, i finally had to go. They ruled out that. They think it is trapped nerves/tendon which could be. Thank you.

[Technoid in reply to MorningMist]

"omega 3 is also needed to absorb b12 adequately."

Omega-3 fatty acids do not affect B12 absorption that I'm aware of, although getting adequate Omega 3, especially the long chain Omega 3's - EPA/DHA is quite important for other reasons.

[MorningMist in reply to Technoid]

Yes true. I should have said that Omega 3 in combination with b12 is beneficial but not essential for its absorption.

[EllaNore in reply to MorningMist]

I will try it. Thank you both.

[Technoid in reply to MorningMist]

There have been some interesting papers investigating the benefits of taking both B12 and Omega-3 fatty acids on brain function:

ncbi.nlm.nih.gov/pmc/articl...

and Cardiovascular Disease

mdpi.com/2072-6643/14/8/1608

Although the conclusions were not very certain they found an indication that taking both B12 and Omega-3's could be more beneficial for both brain health and cardiovascular function than if just one of the two were taken. Both are critical nutrients that play key roles and functions in the body.

However as far as I could discover there is no indication that taking Omega-3's with B12 orally has any effect at all on the absorption of either. Omega-3's do seem to be better absorbed if taken after a meal containing appreciable fat content.

Ellanore is injecting B12 so oral absorption mechanisms of B12 are irrelevant to her case at least.

But I'd definitely encourage everyone to ensure a good regular source of Omega-3 EPA/DHA as they have many very important metabolic functions and may even increase the healthful effects of B12 in some capacities.

[MorningMist in reply to Technoid]

Thanks - looks very interesting. Not seen that paper before.

[EllaNore in reply to Technoid]

Gosh I love your answers Technoid. I will get some omega 3. Anything to help my brain. Thanks you guys for the suggestion.

[JHEW0836 in reply to MorningMist]

Hi Morning Mist—My B12 level was 252 and my folate was >24 when I asked to be tested in January 2023 after having many symptoms. So very similar to your results. How often do you have injections? My folate at last testing only came down to 22 and that was a year after injections for me as well. However, I do not self inject and am at the mercy of a hematologist who will only give me injections every 2 weeks. How are you feeling now? I also need to get my Vitamin D tested again as it was 38 ng/ml in August of 2022 and I’ve not had it tested again since then. I do supplement daily but only with a dose of 1000 iu as I’m not sure what my level is.

[MorningMist in reply to JHEW0836]

The only injections I have ever had were self administered. Two doctors dismissed every symptom (mainly neurological) and offered antidepressants. My gp asked the advice of a haematologist who bluntly refused a referral, stating that 254 was perfectly ok.

I saw a neurologist for all over twitching and fasciculations and a cardiologist for thousands of ectopic heart beats a day. Neither of them found anything amiss and I find it incredible that they didn’t think to do any blood tests.

In the end I had private tests at the Nuffield hospital in Oxford which showed b12 low in range and raised homocysteine. My gp refused to look at the results because she didn’t know how to interpret the homocysteine test and the other doctor I consulted told me there was no such thing as active b12. So in comparison I think your haematologist is very enlightened to allow an injection every two weeks! I would be delighted with that treatment. I self inject once a month and gradually most of my symptoms have disappeared.

It really does show though just how hit and miss it is to find anyone knowledgeable to take it seriously. My faith in the medical profession is at rock bottom.

My vitamin d was initially 35ng/ml and is now about 100 after two years of taking 1000iu daily. Some people take higher amounts but it seems adequate for me.

[EllaNore in reply to MorningMist]

I'm so sorry MorningMist. That unfortunately sounds so familiar. Yes antidepressants the go to drug for everything. The answer to everything doctors don't understand. It's all in your mind. it's all psychosomatic. It's appalling that they did not think that 254 was low enough. my B12 was 221 and my doctor thankfully said it was in the tank. So I am very grateful for that but after that they weren't able to help me with anything. I gave them literature. I sent them links I did everything I could to have a conversation with my doctor in a nice calm way and after 3 years I finally lost my temper. I'm glad you're self-injecting. I'm glad you only need it once a month. But if you start getting more symptoms it's okay to increase that. I'm really sorry that you've been dismissed that way. There's nothing worse than being dismissed and not having anywhere to turn. It is this forum and the people here, like you, that have helped me the most. Hang in there keep taking care of yourself and keep sticking up for yourself because there's nobody else to advocate for you. Big hugs and thank you for all your helpful words.

[EllaNore in reply to MorningMist]

Oops Sorry I thought you were talking to me. 🙄☺️

[MorningMist in reply to EllaNore]

Well I could well have been. 😊 You, JHEW0836 and I have had similar experiences and these conversations can get quite difficult to follow.

I too find it incredible that many doctors appear to have no intellectual curiosity about unfamiliar conditions. That realisation has destroyed my faith in the medical community. I’ve also considered questioning whether a doctor has the right knowledge to treat you, or as you say the willingness to learn. I find it ridiculous to have to consult someone who doesn’t understand what you are talking about and wouldn’t care anyway even if they did.

[EllaNore in reply to JHEW0836]

I'm sorry your going through that. JHEW0836. Do you think you might self inject? How are you feeling in between injections? Do you feel you need it daily or eod? I really feel SI puts the power back in our hands. People here will help you learn how. There are lots of videos. I highly recommend it. Especially, if your health is declining and you can't find help. Hang in there. 🌸🫶🌸

[JHEW0836 in reply to EllaNore]

Hi EllaNore! You are so sweet. I really don’t feel the greatest between injections. I feel like I am not using the B12 very much at all. I seem to have plenty of folate, my ferritin and iron are all good, and I’ve had injections at various frequencies for a year. I had weekly loading doses for a month then put on monthly maintenance. Still symptomatic. So I asked for weekly doses again which the doctor agreed to but then he thought my level was getting too high so he put me on monthly again. It was 1100. After he put me back on monthly, it fell to 600 and I felt awful. So now I’m at every two weeks. My red blood cell count and white blood cell count are still flagged as low. Not quite as bad as in the beginning, but after a year I thought I would be better. I think I need to have weekly injections or maybe try a different form of B12? I’m also in the US and I feel only cyano shots are available here. My hematologist has never offered another type for me to try either. I do take a sublingual 1000 mcg methyl B12 supplement every day but I have no idea if that even helps. I’m currently seeing a naturopath for my gut issues and she’s trying to help me absorb my injections better by putting me on various supplements. I’ve been symptomatic since having COVID back in December 2021. I was also working in a water damaged office for 4 years that tested positive for mold. So I don’t think that helped either (I have a different job now).

[EllaNore in reply to JHEW0836]

Aww thanks Jhew0836,

You probably aren't feeling good between injections because you need more. I'm afraid your doctors are kind of going about this wrong. Your b12 will ALWAYS be >1500 if you are doing it correctly. The fact that your doctor thinks 1100 is too high after injections, tells me they don't know how this works. When we inject, only a small amount of it is used by our bodies and the rest is peed out pretty quickly.

This is the way I see it. We eat an average of three meals a day and if we eat animal byproducts that is how we get our B12. Throughout the day in each meal. EVERYDAY. So it would only make sense that we need B12 everyday so our bodies have fresh b12 to use each day. As we don't store it in our livers anymore. When we inject, it goes under our skin in one large dose, not 3 tiny doses throughout the day. So we use that injection, as much as we can absorb that day, and the rest gets peed out that day! . How are we supposed to be ok without b12 for another week, month, three months?? We can't!

Your b12 reading of 1100 is in your blood NOT being used in your tissue. It is an inaccurate reading and the rules are, they are not supposed to test you anymore since it will be an inaccurate reading. And it freaks them out. If a health spa is allowed to inject one individual 58 times in a 90 day period, why can't someone that has PA and can't absorb it, have equally as much??? it does not make a bit of bloody sense.

The fact is, WE CAN. we just have to buy our own and treat ourselves. I highly recommend it. Your doctors are not treating you according to the rules. I will never trust or do what my doctors say about this unless I know it to be accurate. My doctor told me, Eleanor, I don't know anything about PA. YOU know MORE than me. I just can't help you anymore. Exact words. So I gave him all the info he needs and he refuses to look at it. He simply doesn't care and refuses to accept that his treatment and all treatment is wrong!! The fact is none of us are getting the proper care from any of our doctors. Especially in the US. We simply have a lack of resources and knowledge. There is a new support group, in Illinois, that PAS wrote an article about. I am going to see if I can hook up with that place. as I am about 5 hours away in Iowa. If you live near me, I would be happy to meet you and start a support group.

If you can't absorb b12, oral b12 won't really help, but they can't hurt either. But I find it a waste of money. You can absorb a tiny amount but it is not much.

All in all, you are not being treated correctly. The roller coaster ride your doctor has you on is not right. Others can verify that for me or you can ask for another opinion, but you need more b12. I have high folate, all my other bloods are normal except D3. But my MPV (Mean Platelet Volume) is high, which means my RBC are too big which means I have macrocytic anemia, but they refuse to look at that because my RBC's are not that low. I have had low WBC and RBC at one point but both are OK now but not until I started daily injections, and sometimes twice in one day, if I am particularly bad that day or week!

There is more than one kind of anemia. Low RBC is one, but then there is macro and microcytic anemia. Macro is enlarged RBC's and micro are too small RBC's. Both are a form of anemia and will lessen the amount of oxygen your body carries to every cell in your body. Without adequate oxygen, stuff starts to happen. Like demyelination. Causing neuropathy. Low MPV causes you to be tired and lethargic and your legs get heavy and weak and much more. But even my hematologists (6 of them) refuse to see it because all they are looking at are RBC's. my MPV and MCH are all red flagged as either too high or low. and still they refuse to see it. They even looked at my blood through a scope and said my RBC's are too large. in fact I have a mixture of too large AND too small. But still they don't put the pieces together. That is the problem, no one connects the symptom dots with the test dots.

So there is way more to this than just your B12 levels, that your doctors clearly are not getting. People want to believe and trust their doctors, but in the case of PA, they are very wrong.

If you make a post about your blood test results and tell everyone what you wrote here, people will verify what I am saying. I would start your own thread and ask others what they think. I think you need more injections at least EOD. For life! no more stopping and starting. Big hugs, and lots of luck! 🌷🦋🌷

[topazrat]

No answers, but my folate is always off the top of the scale and I don't supplement it anymore I used to, but stopped when it came back over range.

At the last visit the Doc asked if I did supplement as it was high. I said no and she just said hmm, that's odd! I've been injecting weekly for many years, so have no idea why it is so high.

[EllaNore in reply to topazrat]

That is very interesting topazrat. Do you have any kind of symptoms because of high folate? I'm glad I'm not the only one. I'm not glad you have high folate, sorry, but it is nice to know its not that unusual. Thank you.

[topazrat in reply to EllaNore]

As its always been high, I wouldn't know if it was the folate causing symptoms or something else, to be honest 🙂

[EllaNore in reply to topazrat]

Exactly!! I'm so sorry. If i find out anything i will make a post. 🌸

[25092]

Hi Ellanore, your post breaks my heart. Since having PA/B12 deficiency and hypothyroidism, I experience the same exhaustion of trying to tell these Doctors how I feel and they don't seem to care too much. I know this illness is complicated but I want them to hear me out and just show me they are trying. It seems like I even have to fight for the smallest victories with these docs. Like you, I'm exhausted and scared sometimes but I remember you answered one of my post when I felt like it wasn't going to get better and you said when things get rough to remember to keep telling yourself, it's the PA, it's the PA and this to shall pass then , I would pray. I did start watching the YouTube videos of cleaning rugs (I know guys sounds NUTS but it worked) a long with the videos that you find 3 things in to pics that are different. I get distracted and it calms the mind for the day to say tomorrow will be better. GOD camp HIS Angels around you Ellanore and have a peaceful blessed night.

[25092 in reply to 25092]

Here's some of the videos. Hope it helps.

[25092 in reply to 25092]

youtu.be/yswMIab9UeA?si=0m5...(Not working as expected?)

[EllaNore in reply to 25092]

Wow, simple yet i missed three of them. LOL Thank you for this. It's great for my cognition issues. I also just started Lumosity brain games lumosity.com/app/v4/dashboa...

[EllaNore in reply to 25092]

25092, That was so very sweet of you to remember what i wrote to you and to offer your kindness back to me. Distractions work great. I will check out your links. Thank you so much. I also watch watercolour paint videos. I can get lost in those. I know exactly what your mean by just listen to me. Act as though you at least care. What gets me, is that if I was a doctor, I would want to educate myself on something that I didn't know anything about and help someone. As a graphic designer I constantly was training myself for new things. I don't understand how a doctor could not want to look at information that has been handed to him and not want to try to help somebody that lives in the same town as them.I'm really sorry that all of us have to deal with this kind of stuff. Thank you so much for being so empathetic. I hope you are stable and hanging in there. 🌸

[EllaNore in reply to 25092]

Maybe we should look for a new doctor. Sometimes i feel like putting an ad somewhere looking for a doctor that is open minded toward B12d/PA who is willing to learn the truth and help me. I am going to file a complaint against my doctor though at the very least.