I need answers

[tyana]

I have sickle cell trait they said it doesnt have any sysmtoms but have been having head,fever,trouble remembering things,dizzy spell ,joint pain,trouble breathing,chest pain

[bluebug]

Have you seen your doctor? What have they said?

[JustGe]

I'm the same, I have trait and my doctor tells me it should not affect me. But they all tell me my hemaglobin (sorry about the spelling) is the type which cannot carry or absorb iron etc. So I'm told taking iron makes no difference.

This is confusing, because my latest blood tests show I'm anemic. At first I was told take this prescription for iron and take tablets 4 times a day. I reminded my doctor what they first told me. After viewing my records, he was like "oh yes, iron will not help you, take it once a day instead". No other advise and I'm feeling real bad 2 months down the line.

Now I have the pretty much the same symptoms as Tyana. Made worst after my period, which was longer than usual as well.

Like Tyana I'm told I trait shouldn't affect me, I'm not even near the serve trait side. My question is, is it possible doctors do not have all the information?

My cousin and nephew have reported similar experiences, my nephew was hospitalised, but told they could not work out why his legs stopped working and became so painful. He's only 5! I worry he like myself and cousin will grow being told it's all in our heads and we need to just exercise more. Are there any answers out there that may help us? After all we may not have full on Sickle cell. But something is affecting us and it is painful.

[bluebug in reply to JustGe]

Unless the doctor you saw was a haematologist in one of the UK major hospitals that specialises in treating sickle cell they won't have all the information.

General practitioners know a little about a lot of things. They have to look things up but most of them either don't have time, or are in a minority of cases are rude, ignorant and arrogant so can't be bothered.

If you are in the UK there is information on patient.info that states sickle cell trait people can have sickle cell disease symptoms.

In regards to your iron level - if you have sickle cell trait only then taking iron tablets should raise your ferritin (iron storage protein) and haemoglobin level. It may not go to the level of those without red blood cell disorders but it will raise it. However if you have the full blown sickle cell disease then taking iron could cause problems. If you have a combination of sickle cell and thalassemia then again taking iron will cause problems.

I am not sure why your doctor put you on one tablet a day as that is a maintenance dose for those who have had iron deficiency. Normal dosage is 2-3 tablets per day.

If you are really unhappy demand a referral to a haematologist but if you aren't in an area where there is a department that specialises in sickle cell you will be wasting your time.

[Somersinger in reply to JustGe]

I had very similar symptoms and doctors understood nothing and we're too proud to say they didn't know. Then I met a Hematologist who discovered that I have sct with Thalassemia. I began having iron infusions and the anemia improved greatly; however to maintain my iron intake (pills don't work), supplement daily all the B vitamin complex, Vitamin K rich foods, vitamins D & C, do not engage in strenuous exercise. Pace walking and deep muscle stretches, reasonable bike riding only; avoiding events that result in oxygen deprivation: fever, (get flu shot), while you can't always avoid it think in terms of deterrents from bone injuries, even sprains, and staying hydrated is a must. I improved greatly. No crisis for few years. Of course bc of the nature of the disease there were times symptoms were present and even crisis for seemingly no reason, but less is so much better.

[JustGe in reply to Somersinger]

Thank you, I will give this a try. 😊 I've been taking supplements, but didn't think to take B complex.