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  #1  
Old Fri Mar 8, 2013, 04:51 PM
semayden semayden is offline
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High levels of folate require bone marrow biopsy?

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.
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Old Fri Mar 8, 2013, 05:41 PM
Marlene Marlene is offline
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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.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Thu Mar 14, 2013, 08:09 PM
cathybee1 cathybee1 is offline
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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.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #4  
Old Thu Mar 14, 2013, 11:06 PM
tom30 tom30 is offline
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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
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #5  
Old Fri Mar 15, 2013, 12:33 AM
Chirley Chirley is offline
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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
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  #6  
Old Fri Mar 15, 2013, 01:46 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Chirley View Post
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.
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  #7  
Old Fri Mar 15, 2013, 01:52 AM
cathybee1 cathybee1 is offline
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Thanks Chirley, I sent you a PM and thanks Neil for the reminder to do some housecleaning!
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #8  
Old Fri Mar 15, 2013, 01:02 PM
Lbrown Lbrown is offline
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I am interested in that test too.

Thanks,
Deb
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  #9  
Old Fri Mar 15, 2013, 01:28 PM
Marlene Marlene is offline
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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.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #10  
Old Fri Mar 15, 2013, 05:32 PM
cathybee1 cathybee1 is offline
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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...
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #11  
Old Fri Mar 15, 2013, 10:35 PM
tom30 tom30 is offline
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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....
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #12  
Old Sat Mar 16, 2013, 12:23 PM
Marlene Marlene is offline
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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?
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #13  
Old Sat Mar 16, 2013, 01:31 PM
Marlene Marlene is offline
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So I found this link online for the cream. Be sure to watch the embedded video

http://www.neurobiologix.com/Neuro-I...Cream-p/46.htm
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #14  
Old Sat Mar 16, 2013, 03:22 PM
tom30 tom30 is offline
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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...
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #15  
Old Sun Mar 17, 2013, 09:39 AM
Marlene Marlene is offline
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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.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #16  
Old Tue Mar 19, 2013, 03:01 PM
cathybee1 cathybee1 is offline
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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.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #17  
Old Wed Mar 20, 2013, 08:47 AM
Marlene Marlene is offline
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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 .
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.

Last edited by Marlene : Wed Mar 20, 2013 at 10:15 AM.
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  #18  
Old Wed Mar 20, 2013, 03:20 PM
cathybee1 cathybee1 is offline
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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.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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Old Wed Mar 20, 2013, 04:30 PM
Marlene Marlene is offline
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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.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Wed Mar 20, 2013, 05:00 PM
tom30 tom30 is offline
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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.
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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Old Wed Mar 20, 2013, 07:21 PM
Marlene Marlene is offline
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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.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Mar 21, 2013, 03:21 PM
tom30 tom30 is offline
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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.
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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Old Thu Mar 21, 2013, 05:39 PM
Marlene Marlene is offline
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Sounds like a good plan....your counts look great.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Wed Aug 14, 2013, 03:00 PM
Marlene Marlene is offline
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Methylation process/b vitamins

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/2013/0...m_medium=email
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.

Last edited by Marlene : Wed Aug 14, 2013 at 03:03 PM. Reason: Add a link
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Old Wed Aug 14, 2013, 07:23 PM
Chirley Chirley is offline
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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.
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