Alpha thal (i think) and iron deficiency COMBINED...please advise...

Hi Andy-
New tests in:
RBC: 4.9
Hb: 9.1
Ht: 30
MCV: 61
MCH: 18.5
MCHC: 30.2
RDW: 17.7
Iron: 22.5
Ferritn: 3
TIBC: 79 (HIGH)
Iron saturation: 5% (LOW)

My OB/GYN feels I should double up on the Iron protein Succinylate (40 mg Fe3+)  Ive been taking for the last 11 months in combo with my Folate- for the next three months. I asked him if that was over kill on the iron - he said no- ) Whats your oppinion? I told him I was going to see a haematologist- he said that would be good and I should- but that the fact remains I definately have Iron deficient anemia AND Alpha thal. minor and I need to treat the former. Thats my latest. Your oppinion would be greatly valued!
Kate

Hi Kate,

Low ferritin, low serum iron, very low iron saturation and high TIBC all point to iron deficient anemia. The high RDW is possibly related to your ongoing blood loss, although it can also be the result of alpha minor. The possibility of alpha minor does cloud some of the readings, but the iron levels all point to iron deficiency.  I have to say that possible blood loss is my main concern here. The lack of response to iron could signal a continued blood loss and this has to be regularly monitored until you are certain there are no more polyps and no more bleeding. I have been extremely iron deficient due to blood loss after surgery. I could not take iron and had to correct the deficiency on a vegetarian diet. Even then, within six months, I was well on my way to normalcy. I would have to say that either the form of iron you are using doesn't work for you, or there is still some bleeding. A hematologist may have some ideas for correcting the iron problem and also some insight into why nothing has changed.

Thanks Andy-. waiting for a referal to a Haematologist...will keep you posted.
K

K,

I never improved hgb or ferritin or energy levels, with any kinds of iron, pills or liquids.  I felt they kept me sick for many years.

The one i take now is not like a syrup you put into a spoon and drink.   :-)   Its a liquid in a tiny little bottle with a dropper. So what I have to do is take 2-3 drops in a bowl of water, and drink it up.  (Hope i explained it well. )

:-)

They're better to absorb and easy on the tummy.
:-)


(Copied this from the data on the bottle.)

Each 5 ml contains :            
Colloidal Iron           
equivalent to elemental iron 250 mg           
        
Folic Acid IP      500    µg 
Vitamin B12 IP    5    µg
Syrup and flavour q.s.          
Extra vitamins added to compensate  probable loss on storage           
For therapeutic use. 

wow Preety thats interesting. Could you tell me please what the product is called and I will see if I can source it in the UK or in Greece?
Thanks so much and hope you are well.
K x

The one i use is called tonoferon.  These are actually pediatric iron drops that even babies use.  So i guess anything for babies might work!  Try checking with a pediatrician.

:-)

Thanks Preety!

Hi Andy,
I managed to get my hands on some older blood work that shows no signs of anything irregular-
From 2001:

Hb: 12.7  (11.5-16.5)
Red cells: 4.49  (3.8-5.4)
HCT: 38.7 (36-46)
MCV: 86.3 (76-97)
MCH: 28.3 (27-33)
MCHC: 32.8 (32-36)
RDW: 13.1 (11-15)

Given my current situation- what does this mean?
I was really suprised- I expected to see results that were consistent with alpha thal- but these are normal- does that outrule alpha thal?
As always I would greatly value your input...

Kate 

Kate,

Those readings all look normal, and would not lead anyone to think that any type of thalassemia is involved, which of course leads back to the regular bleeding you've experienced as being the source of the anemia. Your current blood work shows why iron deficiency has to be ruled out before alpha thal can be diagnosed from a blood count.

I see . Thanks Andy. Will push on with LOADS of Iron.

Kate,

It's going to be a vicious cycle until the polyps and bleeding are controlled. Try to avoid blood thinning meds like aspirin and Nsaids like ibuprofen. Have hormones ever been tried to stop the bleeding?

I had a removal 2 months ago and am currently clear. My current aproach to prevent reoccurance is one of diet and exercise. I am getting re assesed in August- bleeding as such has been normal to minimal over the last 2 months and Im really hoping it stays that way. If it doesnt- next step would be hormones- BUT my ob/gyn is hesitant because my hormones are in good balance and as such the polyps development has been atributed to spikes (like from getting upset) and being over weight (20 kgs) as fat cells release oestrogen.
The thing is this took around 4 years to develop...in that time I did have crazy blood loss and also nutritonal defecits ie I hardly ever ate meat and would live on rice cakes etc. I was also morning the loss of my little sister and I had thrown myself into my work and was getting very physically tired. So altogether I reached where I'm at.
So again- right now i have no polyps, i am watching my diet- walking plenty- taking it easy - and taking ALOT of iron. I hope I can resolve it this way.
Andy you are so kind- I would like to help towards this forum in some way. What can I do? Can I make a donation or offer some time- or both? Do let me know.
Many thanks
-Kate

Hi Andy,

I was just getting ready to post in beta thal + iron def. a question re: how does one know for sure if you JUST have iron def. anemia or alpha thal. or beta thal. [abstract you sent re: most common causes of microcytosis] when I noticed kbellia made an entry today re: alpha thal. + iron def.

Are you saying {I realize that we know a plausible reason for her i.d.a.} that the iron deficiency as a single cause of microcytic changes in her blood picture must be ruled out before she knows if it could be alpha thal. with it?

Even with the history of low ferritin and low iron/iron sat., am not exactly sure of this.  The hematologist I have seen did indicate the possibility of alpha thal. as well being part of my picture.
By the way, for kbellia, a company called Nature's Plus that I believe to be a very reputable vitamin source [sold in health food stores in the US] -- makes an elemental iron with folate, B vitamins, and vitamin C with some other food grade nutrients for good absorption.  Called Hemaplex -- 

Another to try would be Easy Iron by a comany called Natural Factors [ferric pyrophosphate] that is supposed to be well absorbed.

Kate,

Gifts to thalpal can be made through Paypal. You can read details at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1742.msg14494#msg14494

I pretty much hate to ask for financial help, but after spending thousands of dollars of my own money so I could attend conferences, it became too much of a hardship for me to continue doing so. Without help from others, this site would not be able to pay the annual website fees, the fee for the thalpal re-direct, the money to purchase supplements and the money to mail them, and last year's trips to NYC for the gene therapy symposium and the thal conference. Even then, I am still paying for the extra employee hours whenever I am absent at my business. I give a lot here but there are limits due to good old reality.

I really appreciate all help we can get to further our work.


Thalfriend,

Alpha thal carrier status is difficult to diagnose and a combination of blood tests, family history and symptoms are normally used for a suggested diagnosis. This is why we so often hear "my doctor thinks alpha thal may be a factor." "May be" is the key here. Only a DNA sequencing can tell for sure, and this is done in response to the "may be alpha thal is a factor" suggested diagnosis. Alpha thal minor and iron deficiency look very similar in the complete blood count, so an iron panel should always be done to either rule in or out iron deficiency. Even then, only once the deficiency is corrected, can a CBC be done to see if normal readings are found. If abnormal readings are still seen, then further investigation of alpha thal would be indicated.

Hi Kate and Andy,

I am in the same situation as Kate with Alpha thal and iron deficiency. i've been taking tons of iron supplements, VB12 and folic acid for as long as 10months which has been of no help. The doctor merely increased the iron supplement dose higher and higher every month and I'm kind of feeling sick of it cuz it's not helping at all!

so i was thinking might as well stop eating those supplements since it's the same even when i am taking it? are there any alternatives that will work?

-Kev