Hemoglobine H Constant Spring

Hello forum, hope everyone is doing well. I am a 32 year old woman with two children and I have just been diagnosed with Hemoglobine H- Constant Spring.

I have suffered for years with what was diagnosed as simply iron deficiency aneamia until recently when my body shut down on a regular basis. My iron level has consistantly been 5. My hemoglobine level is 6.2. My ferritin level is 13.

I was given a course of iron tablets a couple of months ago that made me feel much more ill than I had previously felt so I did not comolete the course, as well as two b12 injections a weem as my b12 levels were also extremely low.

When I was diagnosed my doctor simply gave me a hand out about alpha thessalemia and said 'well at leat now we now why your levels havent been raising' and that was that. I had to review the blood test results myself after reading there are different forms of alpha thessalemia in the forums. This is where I saw it said Constant Spring. From what I have read, this is significant information as constant spring is a more severe form of alpha thessalemia right?

I have not been given any advise as to how to manage this. I have not been given Folic Acid. I have not been referred to anyone. I literally gave been left to find information from googke.

My current symptoms are fatigue, weak bones, sore muscles, migraines 2-3 days a week and muscle pain on my calves particularly dhring the night. I also had pins and needles in my hands and feet until the b12 injections, these have now stopped.

Any advise as to what I should be doing/avoiding. Diet advise. Also should I be seeing a specialist? Should my kids be tested?

The doctor said they do not need testing until they are in relationships and thinking about having children themselves. I found this to be weird.

I had gestational diabetes with my firstborn 10 years ago. My son was born at 31 weeks gestations almost two months early, he is three years old now and little. I had pre-eclempsia with him and pregnancy almost killed me. I really feel let down by my doctor.

Should I perhaps change doctor or is this something most doctors know little about?

Thank you for your help.

First, there is no point in changing doctors, as most doctors know very little about thalassemia. A hematologist might know more, but it's not a given.

HbH constant spring is a more severe type of alpha thal and sometimes will even require transfusions if the Hb slips enough.

Folate is the main treatment. I would suggest getting L-methylfolate and taking 2-5 mg daily. A sublingual B12 tablet can also help. This helps build healthy red blood cells. I would suggest never taking iron as long as you follow a nutritious diet. The iron numbers appear low if alpha thals but this does not mean iron deficiency is present, and as you have seen, iron can cause problems, especially when taken long term. With HbH constant spring, your Hb is going to be low enough that your body is already loading more iron than it needs, so supplements should be off the table. It will only lead to long term health problems and can even cause organ damage.

The children should be tested, because they are going to be carriers of alpha thal and need to know their status before having children of their own. They need to know what they carry and any prospective partners should also be tested before deciding on children.