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Hi

I'm new here, this forum has been a great source of information!:)

Just wondered if anyone can help with information on Ferritin levels - I understand this is the figure representing the levels stored in the liver?

My haemoglobin levels are apparently okay so it took a long time for them to pick this up. My doc said the iron level should be between 22 - 200. Mine was 12 going up to 29 and now 33. I have been taking Ferrous Sulphate for about 6 months now but don't feel any better. :(

As I am now in the normal range they are not really concerned but I just wondered what is the ideal level? I am worried that I still have neurological symptoms, now my doctor is worrying me that I have MS as she cannot think what else would cause this.

I had surgery for Endometriosis about 2 months ago and since then have felt a lot worse with the pins and needles, numbness, tiredness, sore tongue, strange pains etc ! I read somewhere that if you are low on B12 anyway then surgery can cause this to drop further because of the stress? My B12 level is 282 but was 450 when checked 6 months ago. I brought some B vitamins which includes 1000ug of B12 to see if this helps.

I also have had really bad ear pain and a bit of wavy vision since the surgery which again nobody knows why (had an MRI scan and vision tests) I read on other posts that a lot of people with low B12 seem to suffer with their ears also?

If anyone has any information I would be most grateful - feel a bit alone with this as at the moment.

Thanks
Kezzalou,

If you are not properly absorbing B12, those vitamins may not help. The high dosage is key, so you have that right. Even when we don't absorb well, we get some. Studies have shown that sublingual B12 (especially methyl B12) is as helpful, or even more so than B12 injections. I am currently on oral iron and B12 to try to get my blood counts normalized. I find out Monday when I go back to the hematologist.

Try some of the methyl B12, verses cyan. Your body has to convert the cyan to methyl, so it saves a step. I get mine from *****.com. I imagine there are other places that sell it, I just haven't found them. I hope it is OK to mention where I get it...it is hard to find. I have no connection with the company.

Zoe
Hi Zoe

Thanks for your help, I will have a search for that kind of B12. Do you think I am taking the right amount?

I saw the neurologist yesterday, he seems to think my problems are from anxiety! I was certainly not anxious when it all started a year ago! He is going to do blood tests again but now I have been dosing up on the B12 I wonder if this will show up okay now, even if I don't absorb it properly? He said it would be unlikely to have a B12 defficiency as it was not common. I am a vegetarian and have been for a long time but he felt this was not an issue.

Good luck with your blood counts, what level is your iron and B12?

I'll take a look for those other tablets anyway - were they expensive?

Thanks

:)
Kezzalou,

Sorry my link about where I get the b12 isn't allowed. No, the tablets were not expensive at all. I pay just over $7 for 90 tabs. Good luck with your search. Mods, am I allowed to provide the name of the vitamin? It can be purchased at other places besides the one I order from. People use perscription drug names...just wondering, I would like to steer Kessalou in the right direction.

Yes, 1000-2000 ug is the recommended rate for sublingual b12. Many studies suggest 2000 for the first couple weeks, then drop it to 1000. I am doing 2000 one day and 1000 the next. B12 excess will turn your urine a neon yellow. In spite of my high doseage, I rarely have that. In fact my urine is very pale. I figure my body must be using all that B12 :confused:

My ferritin was 60 at the last check, but my bone marrow aspirate (done the same day) revealed absolutely no iron in the bone marrow. I know a falsely elevated ferritin level can be caused by inflammation, but I don't have any inflammatory diseases I am aware of. I also have a mildly elevated platelet count, with megakaryocyte (the bone marrow's precursors to platelets) hyperplasia.

My b12 last tested at just over 300. However, I was having some neurological problems, and my blood smear (also done the same day as the aspiration) revealed hypersegmented neutrophils (a sign of b12 or folate deficiency). My folate tested pretty high, and the hemotologist just wants me on the iron and b12. Outside the USA, many countries consider anything below 500 on B12 to be deficient.

Being a vegetarian can most certainly affect your B12 and iron levels.

Zoe
Hi

Those tablets sound a lot cheaper that the ones I brought. I paid double that for a months supply! Mind you I'm in the UK so perhaps they cost more here.

It would be nice to know the name of the ones to look for if they do allow it ;) !!

People keep telling me I shouldn't take high doses of vitamins in case this is not the problem or if it messes up my blood results. My doctor is not much help so I feel I need to research it myself.

So your B12 and Ferritin are higher than mine... I think "normal" here is 150 or above but from reading this forum I realise this is a bit too low and as you say anything under 500 could cause symptoms.

I don't really know what else to look out for, it all seems a bit complicated !
My neurologist didn't seem interested in other kinds of tests, think he is just running the usual blood test for B12. Maybe I don't have a problem with it as my urine was bright yellow!! :eek:

What kind of symptoms do you have?
Sometimes my gait feels jerky. I get tired more easily than in the past.

But then, right now my mind is reeling...met with the hematologist today. He thinks I have MDS. Because I am only in my 40's, he is sending me to another hematologist who specializes in this for a second opinion. He told me that if I were in my 60's-70's there would be no doubt in his mind. I am going to pop over to the blood disorders board to post.

I will try to answer your question better after I get over today's shock.

Zoe
Sorry you have not had good news - what is MDS? I'm not very clued up on all these conditions.

Hope you manage to get things sorted :)
Sorry it has taken me so long to get back. What a roller coaster! The day after I had the MDS diagnosis my granddaughter was very ill with a high fever, 2 mild siezures because of it...in the ER twice, at the doctor's twice, then amazingly and blessedly, she was fine. But it was 3 days of [email protected]%ll!

Anyway, MDS is myelodysplatic syndrome. Basically it is a bone marrow dysfunction where the cells produced are dysfunctional and die in the bone marrow. I went to the cancer clinic. She confirmed the diagnosis and thinks I may have a mild form of MDS (well, that is relatively speaking as stats say that 50 % of the folks with this mild form will be dead in 6 years--but hey that means 50% will be alive too :wave: ) I am having a second bone marrow biopsy Thursday with FISH chromosome testing. It is a more sensitive chromomsome test than I had the first time and tests 200 instead of 20 cells. My first test showed that two chromosomes might be affected--one for sure, one maybe not, so this test will look closely at the maybe not chromosome. Prognosis varies greatly depending on if that second chromosome is affected.

I will try posting the name of the B12 I take, hope it is OK. I haven't heard otherwise. It is Natural Factors sublingual methylcobalamin--cobalamin just means B12, but saying it makes one look smart :rolleyes:

B vitamins are water soluable and extra is excreted through the urine. Other vitamins and minerals can be dangerous if you take too much. Iron is one of them. Your body cannot get rid of extra iron and overload can cause serious damage.

Did the neurologist test for MMA? Methylmalonic acid? It will be elevated if you are deficient in B12. The hematologist told me that it is a more sensitive test than serum B12.

Zoe
Hi Zoe

Sorry to hear you are going through a bad time - hope your grandaughter is now well again.

How did they discover you had MDS? Is it anything to do with anemia or B12? Good luck with all your tests :)

Thanks for the B12 info, I'll have a search - does it include other B vitamins?

My folate is now high, not sure if this is anything to worry about! My B12 is now 423 but I still feel bad!

Hope everything goes well for you :wave:
Yes, my grandbaby is fine. They have no idea what caused the high temps. The docs said sometimes they just never know.

The MDS was confirmed with cytogenic testing which was done with the bone marrow aspirate. Parts of the bone marrow aspirate were not clear, however. They redid the aspirate and a bone marrow biopsy today. I get the results in 3 weeks. My white counts are off now too...that is new. Although they are off just a very little, so I am not worried about it unless it becomes a trend.

It has nothing to do with B12. Maybe my occassional gait problems have more to do with the tiredness from the anemia. Some studies have shown that B12 can help MDS a little, but it is certainly not a cure.

The anemia is caused by MDS. The bone marrow stem cells have defective DNA and therefore don't produce healthy cells.

Your B12 levels sound great! If your hemoglobin is still good, maybe something else is causing your tiredness. Sometimes it can be such a bear finding out what is really going on. Keep at it though, it is your life and you know your body better than anyone.

Zoe





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