Sickle cell trait problems: Hi I have... - Sickle Cell Society

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Sickle cell trait problems

amysassy profile image

Hi I have sickle cell trait hb d heterozygote so my card says I inherited it from my dad who was also a carrier. I have always been a tired person but iam now 28 and get so tired it stops me doing things I also get pains it feels like something is stuck, I've recently had kidney trouble and problems breathing especially when humid or low oxygen levels. Iam always cold wearing jumpers in summer unless it's very warm my work colleagues always comment as iam always cold, like most people I've read on here my doctors say none of this is to do with my trait! Yet they can't give me any answers I think they just think iam a hypochondriac. Until finding this site I was starting to think it was just me but now I've read your posts feel a little better that I may be right. I was just wondering if there is anyone out there who has had similar problems and has any answers thanks in advance

21 Replies

Hi Amy,

Just to check are you a carrier for Hb S or Hb D or both?

If it's Hb D which sub type?

Just would like to clarify before dropping any answers in here.

Many Thanks

Dan B

amysassy profile image
amysassy in reply to DMBBMS

Hi after they found my dad had it I was tested when 14 and they gave me a card saying hb d heterozygote and said it meant nothing but carry the card that is all I really know as wenever I mention it to doctors they either don't know what it is one even brought it up on Google In front of me or just say it won't cause you a problem but don't explain, sorry I haven't been much help :-)

I don't know. Where do I find that out?

I go through all of that. After researching, I found out that anemia and vitamin D are common with sickle cell trait carriers. I have sickle cell trait and vitamin D deficiency and anemic. But, they all have their perks...

Hi Amy, it appears you carry Hb D (unsubtyped currently) which in the short term will have no adverse affects, however it's something to consider later in life if you are planning on having children. The problem could that you may have an underlying condition that keeps getting brushed away as you bring up the fact you are Heterozygoous for Hb D (or a Hb D carrier). I would ask for some other follow up on your symptoms without mentioning your carrier status. Hope it goes well and keep us posted on any follow up.

Also bear in mind that if you google Hb D remember you are Hb D carrier and don't have the disease and it may not necessarily be the most clinical significant form of Hb D-Punjab subtype.

amysassy profile image
amysassy in reply to DMBBMS

My half sister also carries it but went to a different hospital for blood tests and on her card it says hb d punjab does that make a difference?

DMBBMS profile image
DMBBMS in reply to amysassy

Hi Amy,

Don't quote me but it's likely that you are also D-Punjab, however this would have no reflection on your status as a carrier. Once again when it comes to family planning in the future please ensure your Women & Children team are informed of this fact as D-Punjab can interact with Hb S to present as Sickle cell disorder i.e. if you were to have a child with with a man who was Sickle cell carrier there's a 1/4 chance the baby would be S/D-Punjab. This is termed as "high risk" birth but don't let that scare you, the care of such cases is well covered within the NHS Sickle cell antenatal screening program and they will inform you or any risks and management at the relevant appointments.

As to your "coldness" and hypoxia at low oxygen levels I would chase this up with a genetic counsellor/primary health care team as you may have some other red cell related condition, kidney issues and/or lung issues. Or you may also be suffering from some anxiety and association around the fact you are a Hb D carrier. This isn't hypochondria, this is a reflection of the lack of information and support you've been provided with as a patient.

When you say kidney problems and stuck feelings what does this mean?

Also how old are you Amy? I only ask as if you are still young some of these issues could be related to hormonal changes and/or "growing pains"

amysassy profile image
amysassy in reply to DMBBMS

Thank you iam now 28 I've been having trouble breathing as far back as I can remember at certain times and I get altitude hypoxia also quite badly. I have pains in my kidneys a constant niggle on and of for the last year which started with an immense pain in my kidney just the left side. Last month I was treated for kidney infection but no infection could be detected in urine samples. It is now better but still niggling occasionally. I only drink water. I've also been tested for regular anemia thyroid and diabetes 4 times now as they keep saying it's not the trait but they all come back clear but then no further tests are done. I have a stuck feeling in my chest left hand side which they seem to think is precordial catch syndrome. I am constantly tired which is the most annoying thing as It stops me doing things and the constant coldness unless it's about 25 degrees! Then past that point it's to hot for me also and I can't do anything normally because I cant breath

Thanks for your help so far on this uve been brilliant

DMBBMS profile image
DMBBMS in reply to amysassy

No worries Amy, sound like you have a multitude of symptoms that may or may not be associated with one another. Stay vigilant and healthy where you can. And remember you can always ask for second (or third) opinions, ask for kidney profiles and referral to renal specialists as well as follow up with lung health teams for things like asthma and COPD.

Keep the forum posted on any outcomes Amy and good luck

SCSZoe profile image
SCSZoePartner in reply to DMBBMS

We were going to weigh in with exactly what you said, so thanks for saying this!

DMBBMS profile image
DMBBMS in reply to SCSZoe

Not a problem, passionate about the subject and the people affected. Have been running an haemoglobinopathy screening service for a while so assisting the lost hb disorders is a pleasure.

I have two daughters that both carry hemoglobin D Trait. They say they should not have symptoms, but growing up they have had spells of passing out. My youngest daughter, gets a real bad cramp so bad she wants to pass out and sometimes she does. She has had these symptoms at high altitudes also. They are both grown now, still has the symptoms but not as bad. I just want to inform you that my oldest daughter married a man with the S Trait (which at the time did not know he was a carrier) and they have a child who has SD Sickle Cell Disease. She is almost two years old and has had to have monthly transfusions since the age of four months. This disease to me is just as bad SS Sickle Cell Disease. I have not been able to find much information on SD Disease. Also, this is not just a black disease, anyone could have it. My husband is white and he is the carrier. The babies mother is half white/Hispanic and the babies father is Hispanic.

amysassy profile image
amysassy in reply to Myahrose2

Thank you. Sorry for your daughters pain and passing out it is comforting to know that someone else with the trait has symptoms and iam not just mad! I just feel mine has something to do with it as all the things I suffer from can be symptoms it could be coincidence but if it is, it then makes me extremely unlucky that I have several problems nit just the one that is causing them all. I am also white and so are my family as far back as we know all from Wales and Ireland. I just wish the doctors would investigate rather than sending me for the same tests which come back clear and telling me it's not because of the trait if it's not then tell me Wat it is don't tell me it's not wen u don't know

Myahrose2 profile image
Myahrose2 in reply to amysassy

Yes, she has gone thru several test, diabetes, heart, etc. and all come back normal. Which I feel is a good thing, but hearing your story now, make me feel they are wrong and these are symptoms for the Trait. Thanks for sharing.

No answers yet. But will keep you posted.

Just to update has taken a month with constant kidney pain to get an ultrasound result no kidney stones which was what they suspected as it can't be anything to do with my sickle cell trait as according to them this doesn't cause problems! Go back to doctor today what do we do now nothing can't find anything but iam in pain there must be a reason sometimes we don't have answers take stronger painkillers can i not see a specialist what for we can't find a problem. So end result still in constant pain tired hard to breath but nothing wrong with me.


I’m so sorry for your suffering. I have SCT and my first clue that it was not benign was a yearly crisis with sever kidney infections accompanied by extremely high white counts and full body pain with shortness of breathe. For years I was clueless that kidney infections should not cause that level of pain. I didn’t know why the nurses acted like I was exaggerating my pain with my kidney infections. One accused me of watching the clock. Which I was bc the medicine would wear off at least an hour before I was allowed to ask for more. This would happen for about 2 weeks once a year and usually in the hottest months of the year. I mean for about 20 years without fail. 10 years or so in I started to realize something was difference about me bc I never had a bladder infection with these kidney infections. And I also had sharp pain in the front of my abdomen. Which I know know was bc my liver and spleen were also being affected.

You are not crazy! Now I have many more classic sickle cell symptoms as do my children with trait.

Things that have helped the pain

Stay hydrated

Take folic acid

Drink Noni Juice

Try Moringa Tea

Take Green Herb


Never overdo it

Make sure your family understands and supports you

Research for yourself. Check on a site called pubmed. Sickle cell trait and complications.

Good luck

Thank you so much, it's good to know iam not nuts. Since this post I managed to get to a specialist in sickle cell traits after many blood tests and urine tests which did show kidney infection, but then not on later tests. I have d punjab trait,my doctor was willing to admit all my symptoms seemed to link with sickle cell, until I had d trait, if I had s trait she which they have now found have symptoms she would have looked further into it but as I have d I shouldn't have symptoms as not as many with it have complained or died for them to investigate! So I am now in the position the s trait people were that were getting told they were making it up before they realised they did. I also had a scan which show severe disc damage in my back which they thibk is why I have the kidney pain it's a trapped nerve despite the test showing I had kidney infection, I also now have to go to a lung specialist for my breathing as now they can't put it down to sickle cell they want to investigate, I am not in a hurry to do this as they don't take me seriously I've just bought a oxygen bottle from the Internet and use it when I need. Does the noni juice work I have heard about it but haven't tried yet? Thanks for your reply amy

Yes but you have to get Only Natural Inc brand bc it has 200 k mg of active Noni whereas all the others only have 20k. And please b persistent. Find the research in Punjab d. Help her realize that whenever your red blood cells are not normal you can have problems and symptoms. Go through the other testing to be sure bc of course you can have more than one problem. Be gracious but firm that you need treatment. If it was the disc in your back it would radiate to your legs. And make them check your bones bybMRI. And ask them to compare it to know SCT or SCD cases.

No you are not I believe you but protocol does not allow the doctors to even study Trait only full disease. Pain, severe lifestyle changes, Sadness and frustration is all we are left to feel and forced to deal with. I have had 4 bacterial infections, enlarged lived liver, tissue damage low red blood count, low white blood count and now low kidney function but as long as hemoglobin looks good to doctors, they couldnt care less.

Evenfloe zinc D3 and K2 Iodine these are so important to sct and ss chlorophyll Lglutamine which is rich in vitamin C. Sea moss rich in 92 minerals including iodine.please research this for your own benefit

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