High levels of folate require bone marrow biopsy?

[semayden]

Hi, I don't have all my blood work details (UK), but am completely baffled.

I was diagnosed with pernicious anaemia 10 years ago, and receive regular B12 injections for life. I have my B12 levels checked twice a year and on each occasion over the last decade, regardless of the B12 readings (sometimes higher, sometimes lower) I have also shown large 'watery' red cells, which haven't responded to the B12. Nothing was done about this until recently, when I was referred to a haematologist who said that it was 'highly unusual' but he wasn't worried! He ordered more blood tests which seemed ok, but today when I returned for my 2nd visit I thought he said the folate levels were a bit LOW, and prescribed folic acid supplementation. He then said that if my Folate levels went any higher - he would be looking at a bone marrow biopsy (which he mentioned on my last visit). I am baffled and wondering if I misheard him, because why would he give me Folate if he didn't want me to increase my levels? I am confused. I will ring the hospital on Monday to ask for a copy of the letter concerning my visit today, so I may learn more when that arrives.

I would be grateful for any thoughts on this one.

[Marlene]

That does sound confusing. Many times when you just supplement with one of the B vitamins, it will mask deficiencies in the others. Especially with B12. It will mask a folate deficiency. Do you know the reason for your B12 deficiency from 10 years ago? It's possible you have other nutritional issues too.

There forms of B12, folate, B1 and B6 that are more bio-available. Some people cannot convert the standard vitamins into usable forms. There are inherited genetic errors that prevent this conversion. They are called MTHFR polymorphisms. If you cannot convert it, you may have a falsely elevated serum level.

But if you are taking any single B vitamin, it's always good to add in a B complex to balance things out.

You also need zinc, copper, iron, folate, B6 and magnesium for blood production.

[cathybee1]

Bruce had some tests done lately that indicated though his serum B12 is ok, it wasn't getting transported across the cell walls. He was previously taking an oral 5-MTHFR supplement as well as phosphylated vitamin B complex. The doctor had him begin using a methylfolate/hydroxocobalomine cream that he applies daily.

[tom30]

Hi Cathy, Do you have the name of that test that was done for the b12 transport across the cell walls was called? I'd like to look that up. Thanks

[Chirley]

Hi Catherine, I sent you a PM but it was rejected because you have used your storage capacity.

Anyway, I apologise for using this forum but I just wanted to say that I have been thinking about you and Bruce. Haven't heard from you for a long time.

I hope all is well.

Regards

Chirley

[Neil Cuadra]

Hi Catherine, I sent you a PM but it was rejected because you have used your storage capacity
Marrowforums users who have reached their mailbox capacity should see the forum tip for clearing out old Private Messages to make room for more.

[cathybee1]

Thanks Chirley, I sent you a PM and thanks Neil for the reminder to do some housecleaning!

[Lbrown]

I am interested in that test too.

Thanks,
Deb

[Marlene]

Don't know if either of these were the tests Catherine's husband had but until she can reply to the thread, you may want to google these:

transcolbamin II
deoxyuridine suppression test

I think you need to do some genetic testing to find out if you have MTHFR defect.

[cathybee1]

Thank you, as always, Marlene for the suggestions. You make this nutritional stuff so understandable. Bruce went a slightly different route, so here's what happened with him.

As I understand it, adequate B-12 and folate levels are important not only for hematological functions, but also neurological ones. The doctor who ordered these tests for Bruce is an Ear, Nose and Throat doctor which seems a stretch until you consider the role of autoimmunity in hematological disorders. Anyway, the ENT doctor ran a neuro-immune panel on Bruce which are a fairly standard set of tests (you can google them). The doctor also ran some ENT tests, including oto-acoustic reflexes, and tested Bruce's balance. This ENT doctor then ran the information through a software package developed by neurosensorycenters.com.

Bruce had already been taking a phosphylated Vitamin B complex, 5-MTHFR supplements, and Vitamin B-12 injections. While Bruce's serum B-12 and folate levels showed high levels of both, the neurological tests indicated a B-12/folate deficiency. This suggested an absorption problem. Bruce is now using a neuro methylation cream to deliver folate and B-12 transdermally.

As an aside, the testing also showed high antigen levels for Epstein Barr virus. The family doc put Bruce on an antiviral. We are cautiously optimistic that one of these approaches is helping, as at Bruce's normal transfusion date this week, his hgb was still at 9.4. Fingers crossed...

[tom30]

Catherine, thank you for the information on the tests I have an appointment with the hematologist next week and will ask him about them. I had a bad reaction to b12 injections that I asked my primary doctor to administer after the hematologist said they were not necessary. My serum b12 has dropped below the reference range at least 3 times that were tested. The injections gave me intense fatigue and flu like conditions and my serum b12 was off the charts so I went back to the b12 tablets. Serum b12 is one of the tests next week. You mention autoimmunity and it's involvement in hematological issues, I'm very interested in that aspect since I've had several autoimmune issues in the past. Since my doctor goes back and forth between MDS and an unknown autoimmune issue causing my low WBC and low platelets I've been focusing on any kind of autoimmune absorption problem. I'm currently not eating any grains, beans or nightshade vegetables and limit dairy. There is info out there on theories about these foods messing with the autoimmune process - google 'paleo auto immune protocol' if you are interested in it. Since I feel better than I have in a few years I'll stick with this program for a while.

Marlene, Thank you for listing those tests also....

[Marlene]

Catherine,

I would love to know how well the transdermal cream works so keep us posted. I think there are many who would benefit from it. In the past, the size of B12 molecules in supplements were too large to be absorbed via skin so this is good to know. And, is it available only via prescriptions?

Tom...I'm glad you're pursuing this. B12 is soooo important to so many things. I'm glad the paleo diet is helping. It can take a long time for the body to heal so don't get discouraged. Keep focusing on your overall health. Your body knows how to heal and will do it on its own schedule. Being off wheat can go a long way to healing your gut. The wheat we eat today is not the same our ancestor ate. How long have you been doing the Paleo diet?

[Marlene]

So I found this link online for the cream. Be sure to watch the embedded video

http://www.neurobiologix.com/Neuro-Immune-Stabilizer-B12-B6-Vitamin-D-Cream-p/46.htm

[tom30]

Hi Marlene, I've been on paleo since mid December, I was gluten free since May but was eating some junk gluten free foods. My dentist gave me a book the primal blueprint in November and I eased into a full Paleo by mid December. I'm planning on staying on this for a while. I wish I had read that book before because it really explained the reasons to stay away from the grain, beans and nightshades in a way I could buy into. I hope things are going well for you...

[Marlene]

Thanks Tom. I actually think it would hard to give up nightshades. I've done it once, a long, long time ago but did see any difference. I'll have to look into the Primal Blueprint.

John is doing well. Getting the iron off has been helpful.

[cathybee1]

Marlene, will let you know. Yes, I believe that is the same cream that Bruce is taking, though the name of Bruce's is different and was provided by Bruce's doctor.

[Marlene]

Thanks Catherine. I watched a five part video series on youtube by Dr. Kendall Stewart about methylation problems and other topics. Pretty interesting stuff. I know B12 is critical to the health of our immune system but wasn't quite sure exactly how. Everyone thinks it's just important for red cell production, including many doctors. Apparently, our T cells need it too in order to function properly and the methyl form of B12/folate topically appears to be a good method to transport it to the fatty membrane of the T-cells and myelin sheath that protects nerve cells.

Thanks for sharing that info with us.

Always learning :).

[cathybee1]

The ENT Doctor who ran the tests and gave him the cream attended one of Dr. Stewart's seminars. Our doctor mentioned that some of Dr. Stewart's approaches are not mainstream, but there is clinical evidence indicating his protocols work, at least for some patients.

Bruce had bloodwork today and his Hgb has dropped some so doesn't look like this is gonna be a magic bullet, but if the frequency of his transfusions increases, it will be a win.

[Marlene]

I know how disappointing it can be to see the HGB drop especially when you are doing so much to improve your health. In the video, he indicated that most don't see/feel a marked improvement until 6 -9 months even though the neuro testing shows improvement.

I find magic bullets do exists, but not for most of us. John's path has been a very slow one.

[tom30]

Marlene, do you have any theory on what would cause the b12/folate absorption problems to begin with? As i mentioned I'm on this paleo no grain diet and one of the theories is that it heals a leaky gut which causes absorption issues. Just wanted to see what your research has uncovered.

[Marlene]

Hi Tom,

Pretty much anyone over the age of 50 will have some level of absorption issues with nutrients. The liver can store approximately a five year supply of B12. So by the time your B12 shows up as being low to low-normal, you've probably had some issue going on for awhile.

Off the top of my head, here are some reasons for low B12 absorption:
1 - you lack intrinsic factor. Either due to damage to the lining of stomach or a possible auto-immune issue which destroys it.

2 - Over growth of the wrong kind of gut bacteria, candida as well as h.pylori. The bad stuff eats up B12 so it gets to it before you do and compromise the gut lining.

3- You do not have sufficient HCI (stomach acid) to break down your food. People on acid reflux drugs will have an issue at some point. I know this sounds counter-intuitive, but alternative doctors will treat heart burn and acid reflux with HCI. You need B1, zinc and iodine to make stomach acid. If you don't have adequate stomach acid, you won't absorb zinc either.

4- Digestive enzymes produced by the pancreas are insufficient. Raw foods can help because they contain enzymes that will help break down food.

5 - Celiacs disease/gluten intolerance will destroy the lining of gut and small intestine causing all kinds of issues as well as destroy the cell responsible for making intrinsic factor. And as you know, wheat and grain are inflammatory to many. Most people won't test positive for Celiac but benefit greatly when stopping gluten. It can a long time to heal from this.

6 - Antibiotic use, aspirin, NSAIDs and alcohol abuse can mess things up.

Other reasons....you're a vegetarian, had gastric by-pass surgery or have genetic MTHFR issues.

So healing the integrity of the digestive track is very important to your health on many levels. It keep bad pathogens in check and prevents undigested proteins from getting into the blood stream.

I'm sure I missed something so if anyone can add to this, please do.

[tom30]

Marlene, thank you for the great summary.... I asked my doctor today about the deoxyuridine suppression test and he said it really didn't apply to my situation since my MCV has been running in the normal range usually 97-99, he also has not used or been aware of the b12/folate cream. My CBC was almost identical to the last time I saw him in December so I'm going to stick with my nutrition plan for now.

[Marlene]

Sounds like a good plan....your counts look great.

[Marlene]

I've been reading more about the MTHFR mutation and thought I would post a good website that is very helpful to me in understanding the significance of ineffective utilization of the b vitamins.

Even though everyone gets the standard b12 serum and folate tests when they are going through their work up for blood disorders, I don't think they are adequate.

So here's the website in MTHFR mutations which may help you discover some underlying causes of so many disease processes. At the very least, it supports using the bio-available forms of the B vitamins (b12, folate, B6) and the importance to tailor a supplement protocol to your needs.

http://mthfr.net/

Here's another, easy to follow article based on the above link's info:
http://www.dearpharmacist.com/2013/08/08/2394/?utm_source=Methylation+%26+The+Truth+About+Your+Medicine+Video&utm_campaign=1-29-13+NL&utm_medium=email

[Chirley]

Hi, I tested positive homozygous for a MTHFR mutation and I had a high homocysteine level. I took Folic Acid for years and my homocysteine level returned to normal. I participated in a research study re homocysteine and MTHFR back in the early nineties when I worked for a medical laboratory. I was the only one tested who had the mutation (lucky me) and I can't help wondering if its related to my current problem but the doctors have dismissed my theory.

However, and its a big however, recent studies have shown that Folic Acid, while reducing homocysteine, does not reduce the risks associated with the mutation. In fact the studies showed an increased of occurrence of malignancy in people taking Folic Acid supplements. I have not sighted these studies myself, I was told about them by a vascular surgeon and a metabolic medicine specialist.

Having said that, the haematologist I had, insisted I took Folic Acid, B6 tablets and B12 injections and I'm currently on monthly B12 injections ordered by my GP because my B12 level keeps dropping below normal.

[Marlene]

Hi Chirley,

Current thinking in the Functional Medicine world is that the type of Folic Acid used is critical. The folic acid found in most vitamins and in fortified foods is not recommended for those with the mutation. Even those without the mutation should avoid this form of folic acid. For those with the mutation, the body cannot utilize it, it builds up leading to other problems like cancer. For those without the mutation, they may not be converting it for other reasons...they could be lacking in the co-factors needed for the conversion. Some co-factors are B12, B6, B2, zinc and magnesium.

So even though you cannot correct the mutation, knowing you have it can provide some insight in designing a proper protocol to ensure proper methylation.

I listened to a couple of podcast on this and it was interesting to learn this doctor's approach to correcting methylation and the balance is key. Over methylation can occur so you really need a tailored protocol. Over methylation is easily dealt with and is usually a result of supplementing too aggressively. Or, there are other genetic mutations in the methylation pathway that have not been identified yet. This doctor starts with getting B12 levels up before adding in the bio-available folate. Without B12, the folate won't get to where it's needed.

Raw, green leafy vegetables is the natural way to get your good folate. If you supplement, L-methylfolate, quatrefolic or 6S-5 forms are the ones to use.

Anyone who is using nutrition as part of their recovery or treatment for their bone marrow disease would benefit greatly by understanding the methylation process at a high level.

[sbk007]

Dacogen,Vidaza, SGI112,whatever, they all demethylate DNA. The thinking being that the methyl groups bound to DNA prevents gene expression. When the methyl groups are released they do express themselves. Green Tea is known to demethylate but unfortunately not an option for a fix. I don't think taking 400 mcg of folic acid could hurt but any vitamin in high doses can do more harm than good especially the fat soluble Vities.A,E,D,K and whatever.. Thanks for the post I'm going to ask my doc about it. On another note when I was first diagnosed my platelets were at 80k, having tested Vit D deficient twice (not by much), I started taking 1000 IU a day.
Without any treatment my platelets rose to 140k and never dipped below 130k, until I started Vidaza and hit "Nadir" but still 110,000. I have doubts whether or not the Vit D was the reason for the rise but my doc says it cant hurt to take 1000IU. When I asked my GP why he didn't take a vitamin D test he said he assumes everyone in the northeast is deficient, and when I asked the rocket scientist @ Cornel-Weil he said no one goes in the sun anymore..
Regards, Steve

[Marlene]

I would still avoid the folic acid form of folate and go for either raw leafy greens or the bio-available form.

I think high doses of niacin will consume methyl donors in cases of over methylation. Also curcumin/turmeric. Didn't know about the green tea.

There really is a balance in all of this. I understand that a person can have both under methylation and over methylation simultaneously. In that DNA is over methylating while the rest of the body is under methylating. I assume the MDS drugs target DNA but I don't know enough about them at this point.

John was Vit D deficient too. Upping his level didn't have an impact on his counts though. But then, nothing really did. Probably getting the iron out was key in recovery for him.

As usual...the more I learn, the less I know :).

[Chirley]

Thank you that explains a lot. I read (but didn't comprehend) a research abstract on copper transport and learnt that copper uses a methylation pathway as well. In my own mind I have been linking my MTHFR mutation with my copper problem but when I mentioned this to the Metabolic Medicine doctor he discounted any relationship.

So little is known about the basic methodology of metal and vitamin metabolism that I take the doctors denial of a relationship with a grain of salt because even he admitted that his knowledge was limited.

I will try to ask my current Physician to look at the B vitamins and their relationship to bone marrow disorders and copper. Give him some homework so to speak.

Co incidentally, I also have/had Vit D deficiency. I don't know the numbers but I was put on two capsules a day for a number of months in 2010. The haematologist wrote a letter to my GP saying that my Vit D level was significantly low. I had another test in beginning of 2011 which still showed "extremely low" levels. I continued the Vit D for another three or four months then it was stopped. I've never had another level taken. Maybe it's time for another Vit D test.


Regards

Chirley

[Marlene]

I find the medical abstracts difficult also. Almost as bad as a legal contract. And anytime they try to explain metabolic pathways it's even more difficult. Like you said, even most doctors don't have a good handle on it. It's still a very specialized area of medicine/research that is just now starting to get more attention. I think the genetic testing and the interest in epigentics is shedding more light in this area. Also, so much of this is a result of research on autism and is netting out benefits to other chronic diseases that are on the rise in our modern world. Many kids with autism have metabolic pathway issues as well as digestive problems. Correcting them or managing them can go a long way in reducing or even eliminating the severity of their symptoms.

Regarding the vitamin D. Unless you're getting at least 20 - 30 minutes of sun exposure daily, you're probably low again. Both John and I had low D and we both continue to take it. We took 5000 iu's of vitamin D3 daily for 3 months to get our levels in a normal range and continue to take it to this day but not every day. In the summer, I slack off more because of greater sun exposure. Vitamin D works best when taking Vitamin K2. You can find good formulas that combine the two now. Basically, for every 1000 iu's taken, you can expect to increase your level by 10 point over a three month period. Here's a good site on Vit D that speaks to dosage.

http://www.vitamindcouncil.org/about-vitamin-d/how-do-i-get-the-vitamin-d-my-body-needs/

Make sure you're taking vitamin D3 and not the synthetic D2. Most prescription D is D2 and doesn't work as well.

I'm so glad to hear you're doing better with the copper infusions.

M

[Lbrown]

Hi Marlene and everyone,

I started taking B12 a couple weeks ago. I suspect I've had undiagnosed celiac disease for a long time now (since the 1990s). I may have been tested for B12 but I have no record of the results (in Canada they don't give you results unless you specifically ask, which is very annoying to say the least). So I assume way back when I was first diagnosed in 2008, that B12 and folate would have been something they would have tested, but I don't know for sure.

Yesterday I did a search for Gluten in "Blood" and just happened to come across this article. http://bloodjournal.hematologylibrary.org/content/109/2/412.full?sid=606a9bbd-0903-4783-a75d-448bb8e8572c

I have most of the symptoms - pancytopenia, chronic diarrhea, IgA deficiency, dermatitis herpetiformis (DH). The DH started around the same time as my blood disorder, which is a normocytic anemia. At first they diagnosed PRCA, I was negative for parvo and thymomas and stuff. I thought the DH was a result of the exjade. Just recently I went on a strict gluten free diet and the rash is now gone, 100%.

I am in the process of being referred to an internal medicine specialist, someone who might be able to put 2 and 2 together and come up with 4 instead of just 3. I've been transfusion-dependent almost 4 years now. I have been treated with cyclosporine, IVIG (which was disastrous), ATG/tacrolimus (which was disastrous), and then I finally refused to do anymore treatment. I saw the transplant team in 2011 where I was told my bone marrow was normal. I was offered more immune suppression then and refused. I'm on an alternative treatment & transfusions.

It's early days for the gluten-free diet (since May 25) but already my platelets are up from 27 to 52, my WBC is up a bit from 0.6 to 1, neuts are doubled, and my HGB isn't dropping as much.

I am taking 1000 mcg B12 a day, and I am pretty sure I get lots of folate through veggies. My ferritin is around 1300. I try not to take exjade very often but sometimes I have no choice.

What do you think? Should I be supplementing something else? I'm not big on supplementing as a general rule, but I may have a long term deficiency because I have been anemic since at least 2003.

Deb

[Marlene]

Hi Deb,

Initially, I would suggest upping the B12. What form are you using now? I would increase the dose to 2000mcg now and see how you feel on it. If after a few days you feel OK, then up it again. The target would be to get to 5000mcg daily. Then you can consider adding others. I'm a advocate of the low and slow approach.

Depending on how much damage was done to your stomach and small intestines, you may have to use B12 the rest of your life. As you know, celiac interferes with your body's ability to break down and absorb nutrients. A healthy gut is sooo important to good health.

You must be very pleased uncovering the gluten connection. I don't test positive for it but I do much better off of wheat. Same with my sister. And, a good friend's mother stopped all wheat and within one week, her blood pressure dropped 40 point. What's going on with wheat these days?

[Lbrown]

Hi Marlene,

That was quick!

I bought methylcobalamin, I read that was a better form for your body to break down. I did notice you could get 5000 mcg but I thought I better start cautiously.

About 10 or so years ago I was taking some supplements, and noticed B12 did give me more energy.

The gluten connection does explain why I always felt better on a low carb diet. I do find it annoying that none of my doctors even suspected it, but all I want now is to get better. Even if I have to take it the rest of my life it would beat transfusions!

Deb

[Marlene]

I'm very close to my computer this week....working on the house and I can only wash the ceiling in small section before my shoulder acts up. Getting old has its challenges. So each time I take a break, I get on my computer. HA!!!

The methyl form is good. Some people can't handle it and have to try other forms. I think the least effective is Cyno form B12.

Let me know how you do with the increased doses. If you tolerate it well, then consider adding in l-methyl folate, then p-5-p form of B6 and then a B complex.
At some point, a good B complex and B12 may be all you need. That's it for the B's. Thorne makes a good supplement with bio-active b vitamins in a combo. That may be helpful down the road. But for right now, I think doing the key nutrients one at time is a good approach.

[Lbrown]

Hi Marlene,

Washing the ceiling?! Wow...

I'll try increasing the B12 and see what happens. It's been so long since I've been able to do much, now at least I'm able to go get groceries with my husband again and I feel stronger riding my horse. I have had no days of total exhaustion since I quit gluten. I am getting impatient to get better!

Deb

[Marlene]

All in prep of painting. The prep, then the clean up from painting is the the part I dislike.

I'm glad you're starting to feel better. It can take a long time to recover but you will get there. If there's one thing we all learn with this disease, it's patients.

[Chirley]

When I first became anaemic part of the investigation work up was an antigliadin antibody test for Celiac Disease. It was very high so I had a duodenal biopsy which came back negative for CD. I was told the gold standard for a CD diagnosis was the biopsy and that overrode the blood test results.

I was very relieved because I would hate to go without my bakery items made with wheat flour. I love ordinary white bread :)

Regards

Chirley

[Marlene]

I too love my breads and bakery. I could eat pasta every day. Unfortunately, wheat is very inflammatory so I stopped it 100% for six weeks to give my body a rest. (side note: It takes 21 days for your system to clear the antibodies created by wheat/grains) Now I'm more relaxed about and will have it on occasion. John found a great gluten free dessert cook book which uses mostly nut flours. So I got me a nut grinder and have been able to make some very delicious cakes and tarts.

But you can't beat a good piece of artisan bread with butter.

[Chirley]

And a nice bitey vintage cheese.

[Lbrown]

I haven't been tested, and at this point I refuse to eat wheat on purpose again just for a test. I've had symptoms of this for at least the last 10 years. I'm feeling better with more energy but it's still early days.

Marlene, that's interesting about the 21 days. So, if you have antibodies for an additional 3 weeks, I would think you could expect further damage for several weeks after going gluten free? I have noticed with my counts there seems to be a 4 - 5 week lag time. That could explain things.

Deb

[Marlene]

That is an interesting conclusion. It will also take time for the cells in the lining of the GI track to heal and be replaced. Depending on severity of damage, it may not completely regenerate right away.

Your GI track needs zinc, iodine and l-glutamate for healing. Zinc, can be difficult to breakdown. And good bacteria replacement would be helpful too.

You may want to look into bitters like Swedish Bitters. There's are quite a few variations of bitter herbs specifically for digestion and GI health.

[Lbrown]

Here's the conundrum now.

My digestion seems to slowly improve (the chronic diarrhea is not so chronic), but then I take exjade and it starts up again. How do I judge if things are healing under these circumstances? Or - are they? Because I know exjade is pretty harsh on the GI tract.

I am taking 1500 mg at a time, but sometimes skipping weeks or only taking it a couple times a week. My last ferritin count was ~1300. At least it isn't totally out of control.

Maybe more probiotics etc would help.

Deb

[Marlene]

We never figured out how to battle the GI issues Exjade caused. John was mostly nauseated from it. He never got to a full dose and would still have to take a break every three weeks until he felt better. He had the opposite problem you're experiencing. It really slowed down his motility.

I think taking breaks is smart. Have you thought of reducing the dose? And 1300 is not that bad but I understand wanting to keep it in check and reduce it if possible.



On another note....I just read an interesting article on B12 that talked about the difference between two active forms of B12, the methyl form and adenosylcobalamin form. The takeaway was that the later form was utilized more by the blood than the methyl form. Methyl seems to be more effect for the brain/cns. Both will work systemically so I'm not sure if this is significant. But thought I'd mention it in case want to mix it up a bit and alternate between the two. We're all just our own science experiments :).

[Lbrown]

Hi Marlene,

I'm supposed to be taking 2000 mg daily. The last time I tried 2000 mg I thought I was going to die. It took days to recover from severe gastro upset, but strangely enough I used to take that dose all the time. I do wonder what it does to your insides. I basically keep an eye on my ferritin and if it drops I quit taking exjade until it rises again.

Interesting about the B12. I am taking the methyl form, can you buy the other form or does it have to be shots? I am waiting to be referred to an internal medicine specialist and this is one of the things I will ask about (whenever that might be, it's been a saga trying to get referred).

Deb

[Marlene]

Yes you can. I just did a search and found it but most of them had folic acid in them except this one: http://www.highlandvitamins.com/products/vitamins/

This has all three of the bio-available forms of B12 without the folic acid.

BTW, dibencozide is another name for adenos form.

Wow, 2000mg is alot of Exjade. John never got beyond 750. And by the end, he had to reduce it to 500mg and then just stop because his kidneys had enough.

[Lbrown]

Yup, it is a lot of exjade for sure. I took that much for ages. I hate taking that nasty stuff.

Glad to see the B12 said gluten-free, because when I saw Maltodextrin I wondered. I am now taking 2000 mcg of the methyl stuff with no problems.

[Marlene]

Have you verified that Exjade is gluten free. I looked at the inactive ingredients and they appear ok. The only thing that may need checking is the micorcrystalline cellulose.

Glad you're tolerating the higher dose.

[Lbrown]

On celiac.com it says that microcrystalline cellulose is GF. I figured cellulose came from wood fiber, but it was a good idea to check. Maybe I'll send an email to Novartis to make sure.

Thanks,
Deb

[Marlene]

The product itself may be not be gluten but if it's manufactured in a plant that also handles gluten additives then cross contamination can occur. So it's best to check with them to ensure it's "gluten free".

Being gluten free is a challenge. I never knew so many medications had gluten, as well as dairy in them.

[Chirley]

When I have my B12 levels tested the doctor orders a B12 level and an active B12 level. I don't know how the tests differ but I am always below normal or low normal that's why I'm on the injections.

[Lbrown]

I wish I'd known about the B12 yesterday - I asked my family doc for a B12 test and just came from the hospital. On the req it just said "B12". I did read here that even if your B12 levels come back normal, you might still benefit from extra B12.

I had a call from Novartis to let me know exjade was gluten free. I am taking another med where the filler is lactose, I don't think I have a problem with lactose but I did read when you go gluten free you should also go lactose free for the first while. I think I have more of a problem with exjade than lactose.

Deb

[Friedbrain]

If I read this thread correctly, it is possible to have elevated Folic Acid but not be absorbing? Both times my folic acid levels have been measured, they've been elevated (years apart). The first time, I think the B12 was also elevated, but it is normal now. I had neurological problems so that was a logical thing to look at, but docs were not concerned about elevated levels.... ?

Also of interest is the mention of needing to eat low-carb and feeling better. I have been eating low carb for years for this reason. If I eat carb-normal meal, I either crash with fatigue (for HOURS); or if it's sugary, may experience tachycardia first before crashing. I don't know if anyone else has experienced this, but at times (usually around ovulation, which is also a time when I experience autoimmune-like problems), I felt achy/flulike/feverish. I hadn't felt like that in a while, but last month (around ovulation), I was stressed and having to make doc appts, so grabbed a coffee and coffeecake from Starbucks (which I *rarely* do). OMG, I felt so flulike within an hour or two, for the entire rest of the day. I also had some bloodwork in the midst of feeling flulike, and my neutrophil count (the problem I'm experiencing, with chronically LOW neutrophils) had tripled and my lymph count was abnormally low. I CLEARLY (to me lol) had an immune response to eating the sugary snack, but I don't know what it means or who to talk to about it.

[Lbrown]

Hi,

Is it the carbs, or is it more specifically wheat? Because I used to feel the same way - high carbs = feel bad, low carbs = feel good. But I realize now that I am gluten-free, that potato, corn and rice don't bother me at all, and possibly what bothered me in the past was the wheat, because wheat is *everywhere* (soy sauce, salad dressings, chicken stock, beer, etc).

I am interested in the high B12 and folate too, I think it's a good question. Although I would *think* that if it was tested in your blood, then it has already been absorbed? I do think there's a difference between serum and tissue levels.

I have neutropenia too.

Deb

[Marlene]

Hi Deb,

Serum B12 testing is the least accurate way to measure B12. And when you have your blood drawn, you need stop taking your supplement otherwise, you'll get a false reading. I've heard anywhere from 3 days to one week prior to testing.

A more comprehensive check is to have your MMA (methylmalonic acid) and homocysteine checked at the same time. There are other test which I think are newer and not well utilize yet and they are HoloTranscoblamamin and Unsaturated B12 binding capacity.

Regarding blood levels and tissue levels, I too agree there can be a difference. You also hit upon a key distinction...absorption vs utilization.

Glad to hear Exjade is gluten free.

M

[Lbrown]

Got my results:

B12 = 358 (this is after a couple weeks of supplementation).

Other counts:
- HGB 80 (in my system of calculations, this is a drop of 4 points less than average and the 10th week in a row of lower drops which is a record)

- WBC 1 (same as last time)

- Platelets 49 (was 52 the last 2 times, but 27 the time before that)

They didn't have Neutrophils or ferritin yet.

Deb

[Marlene]

Well that's low. Good thing you're working on getting that number up. Low normal is not where you want to be.

[Lbrown]

Yeah, and that's after 3 weeks of daily supplementation.

I read that 500 might be a better starting range?

Deb

[Chirley]

Hi,

I saw this article and copied a small section.

.
Deficits in vitamin B12, if left untreated, can cause a number of health problems such as, loss of mental alertness, neuropathies, nausea, muscle weakness, digestive upset, depression, irritability, memory impairment, poor concentration and water retention. The normal level for vitamin B12 is 180 to 914 pg/mL; although, symptoms can start to occur if levels fall below 400 pg/mL. The physicians at Missouri Bariatric Services recommend vitamin B12 levels be greater than 400 pg/mL. Sleeve gastrectomy patients need 350 to 500 micrograms of vitamin B12 daily to prevent deficiency. Only 1% of vitamin B12 taken orally is absorbed. Vitamin B12 is best absorbed when taken sublingually (dissolved completely under the tongue) or as an injection. If taken as an injection, vitamin B12 should be given in a dose of 1,000 micrograms once a month.

It was on a University website about nutrition and weight loss surgery.

I have 1000mcg via injection every month.

[Marlene]

Hi Chirley,

Thanks for posting this. Many who have undergone weight loss surgery ended up vitamin and mineral deficiencies. B12 being one of the most missed. They ended up with multiple issues as you noted. If caught early enough, many of the problems can be reversed.

The absorption of B12 is very small when taken orally. That's why the larger doses are needed and it usually works best if taken on an empty tummy.

I'm glad they're treating your B12. For many though, one shot a month is not enough to get the levels up. Many doctors will do loading doses to get the level up and then go on a maintenance dose. There have been many studies confirming oral B12 supplementation is just as effective as injection.

Anyone with serum B12 below 500 is suspect and should be investigated.

Saw your other post...glad you're doing better.

[Lbrown]

I will bring all this up with the internist when I see him, right now I am between doctors. Hopefully the new one can look a little more in depth at things that might affect energy levels and apply a few tweaks here and there. For so long this blood disorder has been front and center I think everything else got ignored. That's not good enough.

Deb

[Marlene]

I think that happens a lot. The blood disorder takes front and center stage. So many things can be overlooked or dismissed as a result. Their priority is to work on the blood disorder. Quality of life and other seemingly minor complaints go on the back burner. I understand the need to prioritize. I think having a doctor that's focused on your general health and wellbeing can be helpful.

[Lbrown]

I just got a printout of my B12, I see it is measured in pmol/L, and the normal range is listed as 133 - 675. (Mine was 358).

I tried to convert it to pg/ml.

I found a conversion online of

1 pmol/L = 1.355 pg/mL for B12

So I multiply 358 * 1.355 = 485 pg/ml

So maybe not as low as originally thought?

Deb

[sbk007]

I will bring all this up with the internist when I see him, right now I am between doctors. Hopefully the new one can look a little more in depth at things that might affect energy levels and apply a few tweaks here and there. For so long this blood disorder has been front and center I think everything else got ignored. That's not good enough.

Deb

Both of my docs (GP & Heme) are concerned & sensitive with Quality of life and other health issues. My heme told me his job was to keep me alive as long as possible with a good quality of life acceptable to me, not him.
Both my GP & Heme understand and fully support a decision not to go ahead with transplant, knowing that to some the possibility of having to endure what a lot have to endure for years is unacceptable to some.

[Marlene]

Deb...were you taking your B12 at the time of your blood draw? If so, the test results will reflect it in that they will be artificially elevated. By how much? I don't know. I can take up to 3 months to restore your levels and then anywhere from 6 months to a year for repairs.

[Lbrown]

Marlene,

Yes, I was taking the daily supplements for 3 whole weeks, so I guess the number I got was higher than it would have been 3 weeks previous.

I sure wish I knew how long to expect for things to heal. I've been GF for 3 months as of yesterday. Still feeling better, so I guess that's the main thing, and 3 months isn't all that long I guess.

Deb

[Marlene]

It's difficult to know. I would think anywhere from 6 months to a year. The challenge is to know what else needs correcting. Getting your digestion functioning well is key. That in itself can take a while. Exjade poses its own set of challenges as you know. John's recovery was at a snails pace but slow and steady is not bad either.

I believe your body prioritizes what needs to be fixed. And it doesn't always correspond with what you want.

Fresh air, sunshine, exercise, good nutrition, quality sleep and stress reduction. Sounds simple but difficult to follow all the time.

[Lbrown]

Slow and steady is fine, as long as it's steady!

[Mseth]

Here's another, easy to follow article based on the above link's info:
http://www.dearpharmacist.com/2013/08/08/2394/?utm_source=Methylation+%26+The+Truth+About+Your+Medicine+Video&utm_campaign=1-29-13+NL&utm_medium=email

Marlene, thanks for posting this link. Its a good starting point for people reading and learning about MTHFR.