Hi there, it is me again.

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Hi there, it is me again.
« on: October 09, 2013, 12:49:49 AM »
Hi everyone,

So I finally got back my Hemoglobin Electrophoresis and it looks that I have Beta Thallasemia Minor.

But here is my blood work, obviously I only just found out about all of this a few days ago when I went in wondering what my cholesterol is(I am a vegan), and the blood work lead to all of this information. At least I found out my cholesterol is fine.
 
My GP, who really is just a doctor at the local clinic, I don't go to Doc's often, said there is nothing to worry about, and said not to take any iron supplements.

But, it seems my Iron levels are pretty funky, does anyone have an opinion? It is kind of hard stuff to research online, and I am wondering if I should speak with a hematologist or some other kind of specialist, who may know more? Is there a Thalassemia specialist? Hum...

Anyway, I am glad this board exists I am off to go and read everything I can about my new found disorder.

-CHEERS,
Matthew

RBC = 5.91 = HIGH
HEMOGLOBIN = 11.3 = LOW
HEMATOCRIT = 36.7 = LOW
MCV = 62 = LOW
MCH = 19.1 = LOW
MCHC = 30.8 = LOW
RDW = 19.4 = HIGH
PLATELETS = 245 = OK

FERRITIN SERRUM = 12 LOW

TIBC - 314
UIBC 51 - LOW
Iron, Serum 263 - ALERT
Iron Saturation 84 - ALERT

Hgb A2 4.8 -  HIGH (Beta Thalessemia Minor)

The end. :)

Re: Hi there, it is me again.
« Reply #1 on: October 09, 2013, 01:40:06 AM »
On thing I just found out you need to be fasting for your Iron Panel testing, I wasn't my doctor also said I didn't need to be.

I had a big morning breakfast, with blackstrap molasses and some iron supplements. May be why my numbers are wacky for the iron reading.

I still don't get that really low ferritin of 12.

Hum... very interesting...

Developing...

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Offline Andy Battaglia

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Re: Hi there, it is me again.
« Reply #2 on: October 09, 2013, 03:04:19 AM »
You need to stop iron supplements. Your serum iron and iron saturation are both quite high. Serum ferritin is not a good indicator of anything and should not be the basis for any diagnosis. The low UIBC is troubling because it can be a sign of iron poisoning, and if you have supplemented long term, this could be the case. You are most definitely a thal minor and iron cannot help with that at all. All the levels that indicate thal minor are low and can be differentiated from iron deficiency by the high RBC and high HbA2. Neither would be high with IDA.
Andy

All we are saying is give thals a chance.

Re: Hi there, it is me again.
« Reply #3 on: October 09, 2013, 01:39:25 PM »
Thanks Again Andy. You are so helpful. Yes no more iron. Good black-strap molasses was pretty gross.

Re: Hi there, it is me again.
« Reply #4 on: October 25, 2013, 06:28:20 PM »
Follow up,

Hello Andy and all,


I just saw a hematologist just to see if he had any insight into my
Numbers above. He wants me to take iron 3x a day 325mg because
He thinks that will raise my ferritin level of twelve.

From what I have read hear and elsewhere my initial reaction is not to agree.

He wasn't a thalassemia expert. Just a regular hematologist.

Are there thalassemia expert hemotologists?

I just didn't agree with him and I'm not going to take the iron until I know more.

Any thoughts you have would be appreciated.

He did order a bunch if other types of blood work and that won't be done for a few days. Gene tests etc.

Thanks all

A confused
Matt :)

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Offline Andy Battaglia

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Re: Hi there, it is me again.
« Reply #5 on: October 25, 2013, 06:49:28 PM »
Has the doctor done iron tests? Without an iron panel being done, you should not take iron. There are expert hematologists at the thal centers, but outside of the thal centers, it becomes more difficult to find doctors who truly understand that iron cannot affect a low Hb that is the result of thalassemia.
Andy

All we are saying is give thals a chance.

Re: Hi there, it is me again.
« Reply #6 on: October 25, 2013, 07:20:12 PM »
Thanks, once again a fast reply and great help. He has a large amount of other tests out at the moment. mainly because I think he didn't know what he was looking for, since I don't thin he was a Thal specialist, well, I am sure he wasn't.

I will post back more on Wednesday when I get results, but he did confirm that my high Serum Iron and High Iron saturation was because I had that previous test from a previous Doctor with out fasting, and just 2 hours before had an iron supplement and molasses for breakfast(at the time I was not aware of not taking iron).

I suppose all I really know, is he wants to do tests to rule out gastric bleeding, which I know I don't have so I don't feel I want to take those tests, I just really need to know if I need to supplement iron or not. As I have found out here on this board, likely not.

I guess I just am worried about my Ferratinn at 12 and a regular hematologist like he is was too.

I just wish I know if there are other Beta Thals who have ferratin in that range(Males around my age 43) and maybe it is just "normal" for them(us).

I will mention again I really appreciate your time Andy, thanks. I will look for a Thal expert there must be one in NYC which is a few miles away.

-Cheers,
Matt

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Offline Danny.H

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Re: Hi there, it is me again.
« Reply #7 on: August 12, 2014, 01:07:17 AM »
I'm so sorry to hear that in NY is the same as in Southern Oregon.
I had the same issue  here.
I'm kind lucky cause my PCP understands that I'm not a  yes patient. I took my health on my hands after this last year of doing whatever he and the hematologist said.
It was like a death experience .
I agree completely with Andy
I passed at least 4 months taking over the counter  iron supplements to get my hemoglobin level up .it didn't work so my doctor got prescribed ones ,the same ones they prescribed for you. 1 capsule per day for one month. No difference, but I started to suffer from bloating ,and abdominal pain that I couldn't say were it was hurting exactly. I used to feel like this during the night ,a pain that didn't let me sleep.. Loose days of work and when I went back to the doctor he just could see that I was very anemic. So the symptoms were related to me having anemia. So I got at least more 3 months of prescribed iron in double dose. The month that I took that iron every day without losing one day took in empt stomach with orange juice etc.. Was the worst result in my hemoglobin and ferritin but I was feeling very annoyed,couldn't focus, etc.. The hematologist double the dose and also didn't know what could make me be so low in "iron" February to May 2014 I experience dying, because actually I was feeling poisoned. During all the time I was also practicing detox the treatment used for cancer patients by Gerson therapy. I also did as much gall bladder flushs as possible because at that point  I did everything possible to detox. I just didn't know that iron was the poison. I suffered from  pain in my joins and bones .i do believe that my bones were the ones that in some way got the iron since my organs have been receiving detox through enemas and flushs. It was painful to do everything and I reach a point that I accepted death. So my hematologist without even any kind of communicatinon with me tested my DNA  and miraculous discovered that I was thallassemic person. The test was done in 04-10-2014. When she probably thought about it but she said just in 05- 01--2014 that I should stop the 4 pills of iron I was taking cause I didn't need and my complains about pain my PCP should address because she would no longer treat me  :wah I was happy because I wasn't going to die and run away from that place just to face that I was feeling horrible still. Well I doing better right now because first The Lord that direct me to Andy and this wonderful group. Lots of IP6   Folic acid  Gerson therapy,and raw foodism. At this point  my advise for whoever is a thalassemic is do not trust in just what your doc says get educated.do not touch iron just make us feel worst  and even with all tests that they run on my blood they didn't do nothing like a ferriscan . It's always based on my ferritin and iron serum .they tested me for arthritis and inflammation on my joints but they didn't find nothing because I do not eat acid foods and do not have arthritis . Sorry if I already write about it on other comments but I just cannot get over from this though in how we don't have our docs trained in something that I think is not so rare anymore. Best wishes in your journey to health and keep taking charge of your health. :biggrin
Daniela

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Offline Andy Battaglia

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Re: Hi there, it is me again.
« Reply #8 on: August 12, 2014, 01:41:33 AM »
Danny, yours is a horror story and shows just what can happen when iron is taken long term. This is a real warning to thal minors to insist on a full iron panel before even considering iron supplements.
Andy

All we are saying is give thals a chance.

 

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