So we aren't crazy after all! - Sickle Cell Society

Sickle Cell Society

1,921 members510 posts

So we aren't crazy after all!

Sharpeshooter profile image

I am 41 and my mom is 59. We both have SCT but in our country they don't tell us the type. I have had several unexplained issues develop since my late teens which I will list another time. My mom is a breast cancer survivor and gets several tests regularly. One of her meds may affect the liver over time yet in the last two years it's her kidney function that is decreasing slowly. The doctor told her last week it's unlikely to be related to the cancer treatment and is more likely to be a result of having SCT. This despite being told for years SCT can't cause any problems as long as we don't fly in an unpressurized aircraft or go mountain climbing! Apparently, SCT can have serious effects on our kidneys!

My issues over time have included:

- Kidney infection with no identifiable cause that took 5 months to resolve

- Pain in bones and joints in cold weather along with stiffness and feeling cold before everyone else does

- Mysterious black and blue spots on legs

- Low haemoglobin levels in pregnancy but normal iron levels

- Low blood pressure during pregnancy to slightly high but within normal range for my age otherwise

- Headaches too often

- Difficulty breathing, mild dizziness and extreme fatigue in hot weather

- Heart palpitations on occasion

- Bursting of tiny blood vessels in the eyes at least 4 times in 15 years. This was the funniest one. My doctor first said maybe a mosquito had bitten my eyeball when I was sleeping the first time it happened. I don't sleep with my eyes open - my husband confirmed - so I instantly knew he was talking foolishness. I happened again and he went over my file and said it's not uncommon with SCT. It resolved on it's own and I didn't go back when it happened twice after.

- Slightly low vitamin B12 level but was told that it's not low enough to cause problems and the level has been constant since childhood. Vitamin supplements don't raise it.

The list goes on and on. I constantly drink water and juices all day long so I couldn't be simply dehydrated and when I don't drink something regularly I begin to feel slightly off key. My appetite is poor but I drink a lot. I also got normal lupus and anticardiolipid test results. I function fairly fine generally and the symptoms are generally manageable with OTC meds. I mostly only have very bad days when the weather is off. I can often tell when it's going to get rainy or cold by the starting of the pains. Not diabetic and good lung function was the results of recent tests. Doctor says I am very healthy so this is confusing!

5 Replies

Yes I know it can be confusing and frustrating at the same time. Here in the United States doctors are a bit more informed on SCT. They understand that people with it can have mild and even severe complications as if they had full blown SCD. I’ve even been in the hospital with a SCT patient admitted to the same hospital room as me, and they were having a lot of pain and other issues related to sickle cell trait.

I’m glad you’re doing the right thing by listening to your body and taking care of yourself no matter what the Dr’s say. Staying hydrated is extremely important. I also feel off if I don’t regularly drink water. I’m here for you. Let me know if you want to talk on a more personal friendly level. My email is Resha7721@ yahoo.com

I have sickle cell hemoglobin C trait with alpha thalassemia trait, both not known to cause any issues. The combined trait has not been studied though. I have had pain all my life. I go to the clinic every month for IV fluids and pain meds to have bring the pain down to manageable levels. Have also have red blood cells accumulating in my lungs as well. Just take care of the symptoms the best way you can since this is a genetic problem and try to stay positive. All will be well.

Hi. Sorry to hear your going through So Many Health Issues... I Can Confirm the Eye Issues. They are called Floaters! The Blood Vessels Can Burst Causing Dark Shadows n Blur Vision! Floaters can Heal Themselves But if They Dont Lazor Treatment is Needed. Floaters can also Come When You Have Constant Headaches... I Suffer These Nearly 20yrs and Have Had Several Sessions of Laser on Both Eyes, Then Ended Up with Detached Retina and Lost Sight in Left Eye, had No Vision for Roughly 11month then Surgery and Had to Sleep Upright for 8weeks and Vision Slowly Come Back 6/7weeks After That...Hope this info Helps 🙂

In my case the entire white part of the eye became bloodshot due to broken blood vessels. Doctor said eventually my body would reabsorb the blood and it cleared up after about a month each time. My friend's mom has floaters though and was told she will have to do surgery eventually.

Sounds classic for sickle cell trait complications

You may also like...