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[urja]

Hi Andy & BThal friends

I did write in earlier and got my queries answered. Thank you so much.

The facts

1)
I am a Beta thal minor diagonosed in 1986
HbA2 was 4.4%
HbF was 4.9%
Haemoglobin Electrophoresis = Hb AA pattern

2) I am 52 now and perimenopausal
3) My blood work done this month and end July after a prolonged 12 day extremely painful episode of menstrual bleeding due to fibroids are as follows...
The bleeding was slightly more than my usual menstrual cycle but the pain was excruciating.

Hb 7.1
Haematocrit  22.2
RBC count 3.38
MCV 65.7
MCH 19.2
MCHC 29.3
Platelet count 150,000

4) My normal Hb levels over the past 7-8 years or more has been in the range of 7+ meaning 7.8.7.5,7.3 etc always 7 something.

5) Serum iron - 68.50
Total Serum iron 216.40
Percentage Saturation 31.60
Soluble transferrin receptor (sTFR) 8.29
Vit b 12  310
Ferritin serum 49.3

6) Mean platelet volume - 12.0
    Red cell distribution width  22.6
Mean corpuscular hemoglobin concentration  31.3
Mean corpuscular  hemoglobin 19.8
Mean corpuscular volume 63.4
Creatinine serum 0.38
Erythropoietin serum 167

bilirubin total 1.91
Bilirubin direct 0.43
lactate dehydrogenase 338

7) I have undergone loads of tests like Coomb's, ANA, DSDNA,HIV antibodies, Hepatitis B, HCV abs serum and other prothrombin tests, clotting factors, Lupus,ptt and mixing studies, DRVV screen time plasma, Lupus anticoagulant....
ALL THESE TESTS ARE NORMAL - mercifully.

I have been advised a myomectomy ( surgical removal of fibroid) or hysterectomy if fibroid removal is not successful.
Due to my low hb status the haematologist has prescribed an erythropoetin injection 10,000 IU twice. Once a week for 2 weeks.
After which hopefully my hb will be around 9 and I will be able to go through this hysterescopic procedure.
I am currently on a progesterone tablets until the day of my surgery - Crina NC 10mg
Folic acid 5mg
B100 as Andy suggests
and Vit C 500


Q 1)My queries this time are from thal friends, Andy & empathizers as to what should be my next step...
Q 2)What does this AA pattern mean in terms of supplements and helping me live in optimal health
Q 3)Progesterone Crina NC 10mg taken continuously for over a month - is that ok for me ?
Q 4)Will erythropoietin injection be a good and safe substitute for a transfusion? FYI I have had transfusion before during my pregnancy and again before an endometrial ablation
Q 5) Will iron supplementation help me ?  

I have a follow up appointment with my haematologist tomorrow and by day after thats the 12th Aug I will start my erythropoietin injections.
Any help, advise, information that aids my decision making I will be very grateful for.
Wish you all good health and a great life.
Urja

[Andy Battaglia]

Hi Urja,

Sorry for the delay. Ive been traveling.

1) You may eventually have no choice but to have the surgery. Your Hb is very low for a thal minor, and this is due to bleeding. The cause, the fibroids, need to be addressed.
2) This is just normal for thal minor and the section on supplements for thal minor would address anything you may need.
3) The progesterone should not cause any thal related issues. It's a fairly common treatment, and like most meds has associated side effects. It should not be taken if you've had any issues with blood clots. It can help reduce bleeding but it won't reduce fibroids and can actually make them grow. It may be a good strategy to help raise the Hb by stopping the bleeding.
4) I think EPO is chosen here because you have an ongoing need to raise your Hb and this is to help stimulate your own red cell production, which transfusion won't do.
5) I would think that in spite of your normal iron levels, you are currently using a lot of iron building red blood cells, so making sure you're getting a high iron diet may be enough. Your body will absorb more iron than normal with your Hb so low.

[urja]

Hey Thanks a ton Andy,

Pls don't apologize for any delay. Thanks for your response and thank you for this forum. I now know so much more about my condition and have learnt to question everything pertaining to my condition. This has truly been of tremendous help in decision making for me.

1)Do these numbers say that I am Iron deficient in your opinion ?
Serum iron - 68.50
Total Serum iron 216.40
Percentage Saturation 31.60
Soluble transferrin receptor (sTFR) 8.29
Vit b 12  310
Ferritin serum 49.3

2) My EPO serum values is 167
Normal range is 5.4-31.0 mIU/mL

In your opinion will an EPO injection help increase my Hb levels ?

Just FYI I haven't started on the EPO injections yet. I went in for a second opinion and the haematologist put me on Vitcofol 100mg Iron with Folic acid and B12.
So since 2 weeks I have been taking this dose along with the usual B100, Vit E 400 IU and folic acid, Vit C 500mg
Still in a conundrum...
Hope to hear from you soon.
God bless
Urja

[Andy Battaglia]

You do not look iron deficient. My concern is that with ongoing bleeding, it will drain your iron stores.

I believe the goal of giving both the EPO and the progesterone is to raise your Hb enough to do the surgery. Neither are a long term solution. Usually, surgery is the only solution.

[urja]

Hi Andy,

My EPO levels are also much higher than the normal range so why does the doc say EPO injections ?

FYI the oral Iron syrup hasn't changed my Hb status and so I have been advised to go for an intravenous Iron infusion - Iron Carboxy Maltose 250 mg 

What is your opinion ?

I haven't had my periods since I am on Progestin - 40 days now !
They have to up my Hb levels before they do the surgery 
Thanks a ton
Urja

[Andy Battaglia]

The EPO injections are to help raise your Hb for the surgery. It's only a temporary measure.

[urja]

thank you Andy.