Beta Thalassemia Minor and Iron infusion question? Readings included.

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Hi my first post. I joined because of my wife who is Beta Thalassemia Minor (I guess obvious from my ID)  :biggrin

So I am a bit confused about iron infusion for Beta Thalassemia Minor patients and I worry about any iron overload organ damage related issues.

To give a picture of readings from recent years...

2009 Sept-  Fe-32ug/l   Hb- 10.5

* Iron tablets sometime in this period-

*2009 Nov-  Fe-127ug/l   Hb- 11.2

*2009-         Fe-122ug/l   Hb- 10.5 g/dl

*2010 Nov -  Fe 122 ug/l  Hb-11.6 g/dl

* 1st ever Iron infusion around here as my wife fainted and her Fe readings dropped to 15ug/l and HB to 8/9g/dl.

*2011 Mar -  Fe-208ug/l   Hb- 10.3 g/dl

2012-         Fe 64 ug/l  10.8 g/dl

2013-         Fe 31 ug/l  Hb-12.6 g/dl

- - - - - - - - - - - --  -

2014-         Fe 18.4 ug/l   Hb- 11.6 g/dl

As you can see in the latest 2014 reading iron is down to 18.4 ug/l. wife is not feeling bad as such. GP wants to give Iron infusion to bring her level to Fe 50ug/l.

You think it is safe for her to get here 2nd ever iron infusion?


P.S- We are both vegetarian. Wife is also group fitness instructor so aerobically very fit. I am constantly amazed at the things she does despite her issues.
P.S-II- Last year she was diagnosed with Hypothyroidism, seems to be under control thanks to the tablets she is taking.

« Last Edit: September 21, 2014, 02:17:04 PM by HusbandOfThalBetaMinor »

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Offline Andy Battaglia

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Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #1 on: September 23, 2014, 07:53:12 PM »
Do you have any of the other iron numbers? It's impossible to tell if a patient is deficient from only one test. Typically, serum ferritin, serum iron, and TIBC or TSAT are all used.

Vegetarians should have no problem maintaining iron levels as long as a proper diet is followed. I reversed a very low post-surgery iron level with veg diet alone. I went from Hb 8 to >14.
Andy

All we are saying is give thals a chance.

Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #2 on: September 24, 2014, 05:04:49 AM »
Do you have any of the other iron numbers? It's impossible to tell if a patient is deficient from only one test. Typically, serum ferritin, serum iron, and TIBC or TSAT are all used.


First of all thanks for responding. Appreciate very much.

No we don't have any more iron related numbers. I asked the GP if it was really ok giving iron infusion as my wife is Thal minor, Doc said no problem as she is giving only a small dose but I am not sure the Doc understands fully the ins and outs with regard to iron and Thalassemia. I am really confused....


Q1- So if I understand correctly iron infusion or iron tablets are only helpful for Thal minor patients if there is accompanying true anaemia and not what seems like anaemia due to the Thal condition? Only running full iron tests can identify true anaemia and not just single Fe number?

Q2- With her current low Fe number (Fe 18.4 ug/l....ref range 10-150ug/l, Hb- 11.6 g/d could small doze of iron infusion really do any damage to her organs? I was thinking of making Doc appointment for iron infusion but just before getting the iron infusion also get blood drawn for detailed iron tests to be sent to the lab. OR do you think don't get the iron infusion until the full iron results are back from lab?


Quote
Vegetarians should have no problem maintaining iron levels as long as a proper diet is followed. I reversed a very low post-surgery iron level with veg diet alone. I went from Hb 8 to >14.

We eat very healthy and eat tons of fruits/veggies etc.....are hardcore exercise/ fitness  addicts too. Is there any link here which gives an outline of how to raise Iron levels and Hb levels naturally? I will do a search but I am not sure what else we can do to raise the levels through diet  :food

Waiting patiently for your reply  :yes



« Last Edit: September 24, 2014, 05:10:24 AM by HusbandOfThalBetaMinor »

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Offline Andy Battaglia

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Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #3 on: September 24, 2014, 02:39:22 PM »
Iron has no effect on anemia caused by thalassemia. Iron can only help when the patient is also iron deficient and this cannot be determined without a full iron panel of tests being done.
Although the serum iron is on the low end of normal, it is still within range, so the other values need to be considered. If the TIBC is not high, it is unlikely that iron deficiency is present. I would suggest a full iron panel. Together, with the complete blood count, a much better judgment on the iron state can be made. I would not suggest taking iron unless it is demonstrated that iron deficiency is truly present. This is the most common mistake made with thal minors and over the course of years, this same mistake is often made repeatedly, leading to a slow buildup of iron.
Andy

All we are saying is give thals a chance.

Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #4 on: September 25, 2014, 08:41:44 AM »
Ok will run the full iron panel test and report back. So these are the tests I need? Did I miss anything?

1) Total Iron Binding Capacity (TIBC)
2) Transferrin Saturation
3) Serum Ferritin
4) Serum Iron
4) Hemoglobin (HgB)

Anything else? Should I run a complete blood count too?

P.S- How will I be able to understand the results ie. differentiate between real anaemia vs thal related anaemia?  ??? :dunno :rolleyes
« Last Edit: September 25, 2014, 08:52:00 AM by HusbandOfThalBetaMinor »

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Offline Andy Battaglia

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Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #5 on: September 25, 2014, 02:21:10 PM »
A CBC would also be needed. If you can send me the results, I can advise.
Andy

All we are saying is give thals a chance.

Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #6 on: September 26, 2014, 09:09:55 AM »
A CBC would also be needed. If you can send me the results, I can advise.

Thanks Andy for all the replies. Will get back when we have the results.

Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #7 on: September 26, 2014, 01:59:27 PM »
Ok I found an older blood test report. It is in German(not my mother tongue either) but the terms should be understandable for people who can read blood tests....I hope.

Link- http://i.imgur.com/uL1qrBI.jpg

Andy might not have all that you require but for now does it throw any light or show any pattern?  Btw Ferretin sees a jump because around start of 2011 she got her 1st and only iron infusion. Some iron tablets before though.

B12 looks very good for a Vegetarian I would say.

Vitamin D was 35 (ref 50-140) not in the attached image but we started taking D3 high dose and it pushed it to 80 last time we checked.

Wife has also  recently diagnosed Thyroid issues but under control so far...Hypo.

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Offline Andy Battaglia

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Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #8 on: September 29, 2014, 03:11:40 PM »
Even though the ferritin level bounced around, the Hb seems unaffected by iron supplements.
Quote
*2011 Mar -  Fe-208ug/l   Hb- 10.3 g/dl
The Hb was still low even though the ferritin jumped.
Since ferritin is affected by things other than iron, it is not a good guide in these cases and the other iron tests should be considered. Seeing the Hb only was affected by iron when her Hb had dropped significantly, I would say that except for that one instance, iron was not needed. As you can see from the results, the Hb was not affected when the ferritin rose, indicating that the iron is really have no effect on Hb level, outside of when it had dropped below 10, and iron deficiency probably was present. Ensuring that the diet has adequate iron should be enough. Supplementing with folic acid is recommended, 2-5 mg daily.

I would not agree to iron supplements unless the Hb has another significant drop.
Andy

All we are saying is give thals a chance.

Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #9 on: October 08, 2014, 07:16:52 AM »
Hi Andy have said no to Iron infusion so far and will get full Iron tests done soon, wife was busy plus we are considering if we should go to GP or someone who is a specialist.

Wife is having few low energy days currently. Do you think it is ok to give my wife 2 table spoons of Blackstrap Molasses every morning or is it same issue as iron infusion? I mean how do we get the iron levels up if not even through diet?

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Offline Andy Battaglia

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Re: Beta Thalassemia Minor and Iron infusion question? Readings included.
« Reply #10 on: October 10, 2014, 11:35:53 PM »
Molasses is a good source of food iron and should be preferred over iron supplements. Yes, do have her take it. It's much easier on the body than supplements. Wheat germ is another good source of iron.
Andy

All we are saying is give thals a chance.

 

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