blood results of a pk def. patient - asking for advice

Hello Everyone,

I thought some persons would like to see blood results of a non-thal? I also have a question about a few things. Ok, here we go:

I deleted mine blood results. I consider this topic as closed. Thank you for the advices


Important: at 18 Dec I had a hgb of 4.7. hematocriet .22 , ery's 2.9. The blood tests of 18 Dec and 2 Jan were done in an other hospital. Therefore I can't show you any further results, because they use different ranges. Also I had transfusions 2 days after 18 Oct, 11 Nov, 1 Dec and 22 dec.  (The gene testing of my blood and the donor blood takes 72 hours) And my thrombo's (platelets) are high as usual, because i dont have a spleen (and galbladder) anymore.


I must say that I don't know anything about the things below creatine (kreatinine) - except glucose. I only find it strange that they aren't normal ranges for that. I dont even know what 5.4 means. First I thought it was high, because in the papers there's a F after it. Later I saw that all results have that. so it must be sign that your doc saw this results. The things below thrombocyten are blocked before your doctor saw them. Nurses can say a lot of silly things! ;) Oh, all this was testing after I start using Exjade. Every two weeks +125 mg. At thursday I should have increased my dosage, but I dont have a lot of pills left. I am still waiting at the hospital or the call from the pharmacy.

Questions:
1) Do you think that my vit. B12 level looks fine?
2) How about Folic Acid (foliumzuur)? I must confess that I forgot to take this most of the time.... that's one of my new year resolutions.

A small year ago my doc let do a dexa scan. It turned out that I am in the early stage of osteoporosis. (I never saw any paper though). He gave my pure calcium tablets which my stomach couldn't stand.
He decided to give my vit d tablets. I got the same problem with them as folic acid. In the meanwhile I did some research on my own - without doc and without parents - and I start take tablets of calcium, magnesium and selenium to stop the pain in my legs. I started 5 months ago, and if I forgot to take them I got the feeling that my legs are dying.

To get to the points: Do you think I take the right vitamins? And which other vitamins I should try to take? I have search for a multivitamin without iron, but I cant find it.

I am sorry for my long story.

Thank you in advance,

Dore

p.s. My dad is a bit against taking extra vits, so that's why I didnt told my parents about it. He might know about the anti-leg-hurting-tablets.
p.s.  I miss the old times. When I was younger 8 - 14 I was healthy enough to have every 6 weeks a transfusion, but it might be only true in dreams

Hi Dore,

First thing I want to say is that your dad is wrong about supplements. When one has a blood disorder and also iron overload, there are great physical stresses on the cells of the body and vitamins and minerals are quickly depleted leading to deficiency. While a person without health issues might be able to get by without supplements, this simply is not true for those with blood disorders. This is not opinion, but is fact.

For your particular situation, you do need to supplement with calcium, magnesium, vitamins D & E, and B complex. You have to be faithful with vitamin D or taking calcium will do very little for your bones. Vitamin D is absolutely necessary for calcium absorption. It also does make a big difference in how your body feels. I have been amazed at the difference doubling my vitamin D dosage this winter has made. If I forget and take my previous dose, my legs soon begin to hurt. As long as I take vitamin D twice daily, I feel normal and have no leg pain and tiredness. Also, the form of calcium is important. A good quality supplement like Osteocare will cause less stomach discomfort and also provide a high quality form of calcium. With your test levels, I do not think taking B 12 and folic acid beyond what is found in a good B complex supplement, is necessary.

Merci beaucoup por ton aide, Andy!!!

To fully convince my father I need a really good article. That's how physicists are ;)
I have searched for osteocare, and I will search for it, but I haven't find it yet. I will start to ask more Dutch people about this product. Does Osteocare include glucosamine? They love that stuff here, but so far as I know has it not been proved that it really helps.What kind of amount I should take of vit E? And what's a B complex supplement? Owh, those calcium/magnesium tablets also have zinc in time. I am very sorry about my terrible English of this night.

Au revoir, Dore

Last night I was reading a Dutch book abouyt Iron Overloading and they named 2 mutli-vitamins without/less fe and vit c. The Hemochromatosis Organisation was co-writer

Orthica Gren multi ( http://www.vitaminstore.nl/vitaminen/557/Green-Multi/ ) 90 tablets €27

De Green Multi van Orthica bevat niacine. Translation: it has niacine in it. Shortly after intake your skin can turn into red and itchy. Most of the time this dissapears soon and it's fully innocent.

Bad sides:
It has really strange ingredients:

Enzymen/Enzyms
6 mg bromelaïne
6 mg lactase
6 mg papaïne
6 mg betaïneHCl

Plantenbestanddelen/plant substances???
20 mg akkerpaardenstaart (cauda equina)
30 mg rode zonnehoed (echinacea purpurea)
15 mg knoflook (reukvrij)
30 mg ginseng (russische)
15 mg mariadistel (silybum marianum)
10 mg ginkgo biloba
5 mg bioperine

Good side:
Iron free

Option 2: Bio Multi PLus ( http://epharma-europe.com/pages/ItemInfo.asp?ItemID=13857711 ) 90 tablets €30

This one looks better for me, but: - 6 mg IJzer/Iron (gluconaat)

Owh, dad is home. I will finish this post later

These are not the bad side. They are all natural supplements (the first group all found in papaya).

Bad sides:
It has really strange ingredients:

Enzymen/Enzyms
6 mg bromelaïne
6 mg lactase
6 mg papaïne
6 mg betaïneHCl

Plantenbestanddelen/plant substances???
20 mg akkerpaardenstaart (cauda equina)
30 mg rode zonnehoed (echinacea purpurea)
15 mg knoflook (reukvrij)
30 mg ginseng (russische)
15 mg mariadistel (silybum marianum)
10 mg ginkgo biloba
5 mg bioperine

However, echinacea should not be taken daily, as it will do no good combating infections if taken when not needed.

Thank you Andy

I still don't know where I can buy them. These days are very cold ( between -5 and - 10) so I decided to stay home. However, tomorrow I must buy a present for my father's birthday. I think I will be able to search for them are different kinds of single tablets.

Next time when I post here I will tell you that i bought this supplements.

Owh, how many of vit. E is recommend. One use the "ium " as amount? 

Dore

At least 400 IU natural vitamin E daily (do not take doses of more than 100 IU synthetic vitamin E daily. Synthetic will say dl-tocopherol. Natural will say d-tocopherol). Very important for protecting cells from iron damage.

Hi Andy,

I went to several chemist's, but I have found some supplements. I have bought Vitamine E-200ie (this is the minimal dose) d-tocopherol. Those pills are soft, is that normal? These are 75 tablets from €5. I also bought 
Vitamine B Complex-25 mg/mcg. I wasn't sure about the dosage so I bought this minimal dosage. This are 90 tablets for €4  It has:
vit. B1 50 mg
Vit. B2 50 mg
Vit. B3 50 mg
Vit. B5 50 mg
Vit. B6 25 mg
Vit B12 50 mcg
Folic Acid 50 mcg
Biotine 50 mcg
Chaline 20 mg
Inositol 50 mg
PABA 50 mg

Later I realise that 100 mcg is 1 mg, isn't it? My doctor prescribe 5mg of folic acid daily. I became completely confused in those stores so I decided to buy this one. In spring I will do more research. I couldn't find B complex without folic acid.

p.s. Vit E smells bad

1000 mcg=1mg, so 5 mg is 5000 mcg.

Vitamin E caps should be soft as E is a thick liquid. It's much easier if you just swallow the caps and don't open them. The B complex should be supplemented with your prescribed dose of folic acid.