Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: kbellia on May 20, 2010, 06:03:13 PM
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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.
:dunno :dunno
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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.
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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
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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.
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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 :wink
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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.
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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.
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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!!!
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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
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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.
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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 :wink
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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!
:smiley
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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
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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.
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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
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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
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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.
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Thanks Andy-. waiting for a referal to a Haematologist...will keep you posted.
K
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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.
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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
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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.
:-)
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Thanks Preety! :wink
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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 :wink
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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.
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I see . Thanks Andy. Will push on with LOADS of Iron.
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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?
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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
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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.
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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.
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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
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Hi- when you say you are in the same situation what do you mean-? Can you clarify?
Thanks
Kate
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Kate: I have iron deficiency and alpha thal, but not polyps nor bleeding.
-kev
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I see. I definately have Iron Deficiency and a doctor thought I probably have alpha thal minor too. I am questioning this though as I came across blood work from a few years back that is completely within normal ranges. This is why I am persevering with the iron. Have you been DNA tested for Thal.?
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Kate: oh, it would be good if your blood work can be back to normal if it's just iron deficiency rite! ;) my alpha thal was diagnosed because there are HbH bodies in my blood, no DNA testing was done as my father was alpha thal (word of mouth), but I have no idea if he was tested genetically. My iron deficiency was diagnosed in September last year as a part of anemia testing, and I'm still iron deficient now for no apparent reason..
Hope u feel better soon!
-kev
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Kev,
Sometimes various forms of iron need to be tried, as not all are so easily absorbed. Preety has mentioned liquid iron. If you are truly iron deficient and there is no absorption problem, you should see some change in Hb level within one month. If not, it may not really be iron deficiency. If you do stop taking iron and don't feel any worse, it would be another indication that iron isn't the problem.
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I had also taken hormonal pills for few years to try to control the heavy bleeding, but that didn't help much either. To make things worse I had 2 periods a month - literally I was ON all the time.
The GYN's I consulted see things from a certain view - estrogen/progesterone/etc. It wasn't until I consulted an endocrinologist - that I was tested for prolactin, followed by a pituatary MRI. The hormonal system's master glands are in the brain I think - they control everything else. Sometimes there is a signalling issue - where everything just cascades down and messes the hormonal system. Thats what happened to me.
(I'm not a doctor nor am i aware of exact technical terms, so forgive me if i sound confusing. :-) )
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Andy, thanks for the answer on r/o alpha thal. minor. Gives me something to 'chew on', and wouldn't it explain alot if the CBC normalized as to why doctors never mentioned thalassemia earlier in my life.... :-\