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

HI THERE! Thanks for being here!
My name is Kate I am 37 and live in the UK. Around 5 years ago I started having menstrual irregularities- bleeding inbetween periods and EXTREMELY heavy periods. I was found to have uterine polyps -two of them- that were swiftly removed. A year later-same story. A few months later- a repeat...except now I was feeling crazy weak/exhausted. Blood work was called for and the verdict was anemia. Other symptoms- hair loss, pelvic joint pain (intermitant) and wrist joint pain. These were my lab results 11 months ago:

Hb: 8.5                     Serum Iron: 10.1
Ht: 31.4                    UIBC: 63
RBC: 4.8                    Iron Binding Satn. 13
MCV: 59.6                  Ferritin: 2
MCH: 18
MCHC: 30.1
RDW: 20.8

I started taking Iron protein Succinylate (no side effects) 40mg Fe 3+/day.


 

5 months later my labs were:
RBC: 4.93
Hb: 9.5
Ht: 31.4
MCV: 63.7
MCH: 19.3
MCHC: 30.3
Ferritin: 6
Iron: 16

At this pont I also consulted with a rheumatologist as I was having joint pain (pelvis/wrists)
He said that looking at my blood results he suspected I may have, 'a little thalassemia with my iron deficient anemia. He also wanted to outrule any autoimmune disorders and order other tests to outrule Lupus, RA  etc.
He told me to double up on my iron AND to start takeing Folic acid. And I did this.
A month later the new blood work revealed none of the auto immune conditions- the same iron studies, normal reticulocytes (shouldnt they be high in anemia?) and the following HAEMOGLOBINOPATHY SCREEN: Haemoglobin A0: 89.0/ Haemoglobin A2: 2.20/ Haemoglobin F: 0.00/ Haemoglobin phenotype: A/A
Comment: No abnormal Haemoglobin detected. Iron deficiency and or Alpha Thalassemia carrier cannot be excluded.
I stayed on the double iron dose and switched from Folic acid (which was giving me tachycardia) to Metafolate which I take 400 micrograms of /day. Ater 2-3 months on the double dose I reverted back to the single dose of 40mg Fe 3+ and kept going with the Folate. Mid March I started having breakthrough bleeding again- and a trip to the OB/GYN confirmed a new fibroid/polyp- which was again removed. Prior to this I had a period where I bled excessively and had to resort to three days of Ergonovine Maleate to curb the bleeding.

So in summary- 4-5 years - 4 polyp removals- blood loss- anemia-and 11 months of iron replacement therapy.
After 11 months my latest labs are:
RBC: 4.92
Hb: 9.3
Ht: 31.4
MCV: 63.8
MCH: 18.9
MCHC: 29.6
Ferritin: 4
Iron: 16

I am perplexed as to why my ferritin isnt moving up after ALL this iron...Is it the blood loss in between? My OB/GYN said the fact I have remained stable is good- and to carry on with the iron and folate. He thinks my Hb and Ht will come up some more. Do I definately have Alpha Thalassemia and do I need further tests, and if so which ones? I have also started taking Vit D 1000 iu/day- is that good?
ANy oppinions or answers would be SO welcome . Thanks so much ! K x

Hi kbellia,

This is very difficult to assess because of the ongoing iron deficiency, which is most likely the result of the bleeding. Iron deficiency and alpha thal trait both give similar results on the complete blood count, with low MCV and MCH found in both conditions. The RBC is normally found to be low in iron deficiency, while elevated in alpha trait, and yours has remained on the high end of normal through three tests, which may lead one to suspect that alpha thal trait is co-existing with iron deficiency. The hemoglobin electrophoresis results are puzzling because the totals should add up close to 100% but with a measured HbA of only 89%. I can only think that this test needs to be repeated.

DNA testing is the only certain method to tell if you are an alpha carrier. I feel this is important, because if you can reach an end to the polyps and bleeding episodes, your iron level should improve, but if alpha thal co-exists, your Hb level will not reach a normal level, and doctors could mistakenly continue to prescribe iron after the point where it won't help anymore. If your doctor is not sure how to proceed with DNA testing, show him this article, which is written by one of the top thalassemia doctors on earth,  Renzo  Galanello. The article goes through all the various testing methods for alpha thal.
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=a-thal

I do feel that because of the future potential of being prescribed unneeded iron (you do need iron currently and there seems to be no doubt about this), you should have further testing done to find out your true status.

Andy you are so kind for taking so much time to answer me. I am greatly indebted. I will seek out the DNA testing and push on with my supplements (Iron/Folate/Vit D). One thing...Should I be worried about that Ferritin not moving? I am not risking Iron overload after 11 months based on those figures am I?
I will report back with the results asap.
Hope all is well with you and thanks again so much!
Kate 

Kate,

I think the main concern about the iron levels not rising is the possibility of continued bleeding. If your levels continue to show no progress, you should once again be checked out for polyps and blood loss. If this is not the cause, a different form of iron should be tried, as not everyone will respond to the same form of iron. Talk to your doctor about this if you show no movement in your iron levels. The doctor may decide to try another form of iron. Taking vitamin C along with your meals can also aid the absorption of dietary iron.

Also, thanks for being patient. The combination of iron deficiency and possible alpha thal trait greatly complicates matters, so I did want to take some time to make sure I was not missing anything. The RBC is a key to understanding this, as in iron deficiency, it should be low and it is not, which can lead to a diagnosis of possible alpha thal involvement.

OK will take more vit c - more regularly. My main doctor in this story has been my OB/GYN in Greece. (i live in London- but grew up in Greece and go back frequently) Hes an outstanding doctor and has moved swiftly each time to free me of the polyps which in turn has stopped the crazy bleeding. He is pretty certain I have as he puts it ' a little thalasemia' (which is quite common in Greece) alongside my iron deficiency and he has said the fact that my results came up a bit and have then held stable despite having had the bleeding episodes is good and means that the supplementation is doing something. He said to give the supplements another 2-3 months and test again. Luckily the Iron Protein Succinylate is pleasant to take...
Thanks so much for the article- I will print it off and take it with me when I see a doctor here in London about getting tested.
Thanks again Andy!!!

Also, thanks for being patient. The combination of iron deficiency and possible alpha thal trait greatly complicates matters, so I did want to take some time to make sure I was not missing anything. The RBC is a key to understanding this, as in iron deficiency, it should be low and it is not, which can lead to a diagnosis of possible alpha thal involvement.

Hi Andy-
One more question...just a bit concerened...with my current readings there is no risk of iron overload is there? Is it possible to have values like mine ie:low feritin low HB and Low Ht and yet have iron overload? Just worried as I have been on Iron since last June.
Yesterday after a long walk (ie exertion) i got a bit chesty/wheezy- it passed quickly but I still feel like ive something aon my chest a bit today although my breathing is clear etc...
Just want to make sure I am not doing myself any harm... Thanks K

Hi K,

All of your iron numbers are quite low, so iron overload would seem impossible. The iron panel of tests should be repeated periodically (as often as monthly) to see what effect the supplement is having. Is it possible the wheezing may be related to springtime pollen allergies? In the states, we've had one of the worst ever years for pollen and many people who don't even normally get allergies have suffered. My allergies were the worst ever and that is saying something.

Thanks Andy. Its been around 6 weeks so I will go get more tests. I think youre right on the allergy front.
Thanks alot. Kate 

Hope you feel better soon, Kate,

I had heavy periods for several years, but mine were due to hormonal imbalances. Since my Gyn couldn't figure it out, I switched to an endocrinologist. That helped a lot.

All the best!
 

Thanks preety! My bleeding was caused by polyps- and i know polyps grow in the presence of oestrogen. i had my hormones tested-even thyroid but they all checked out fine...so  i think it could be the fact i am overweight at the moment. I am adressing diet and exercise for that reason in the hope that i stop getting polyps...and therefore stop bleeding too much. Just now I had a removal done 2 months ago so I'm ok at the moment but monitoring matters closely.
Are you ok these days?
Kate

Kate,

My heavy irregular periods were due to excess prolactin. Maybe some other reasons too that a lot of my hormone values were out of range, including estrogen, LH, FSH, Dhea, thyroid, etc. 

The other two changes I made since were also to switch to a celiac diet, and quit iron pills and start iron drops when needed.

Iron pills troubled me a lot, and never helped. The iron drops are a trial now to see if i improve.  My hgb is almost always 9.5, and ferritin is never above 20.

Yeah i'm ok only when the prolactin is normal either with pills or otherwise.

I see. Not sure what iron drops are...I take Iron Protein Succinylate  which is a liquid(Legofer...I have to buy mine in Greece as you cant get it here in the UK)...theres a product called Ferrets IPS in the US which is the same...its very easy to take... I wonder if you are taking something like that?
I do hope you feel better and thanks so much for your input!
Kate