Beta-Thalassemia- Minor Concern....My doctor told me to take iron

Hello, my name is Krystal and I am 24 years old. I've have health issues as far as i can remember. I've always been told I was anemic, and that I have hypoglycemia, irritable bowel, celiac, ulcers and ovarian cysts. As, I get older I keep explaining to doctors that I feel really weak, tired, moody, i'm always hungry but my stomach hurts to much to eat lot. sometimes i get a tingleness in my arms, my ankles swell, I have trouble sleeping through the night. Over just the last couple of weeks I've went from 125- 110. My doctors say my anemia is low, my iron levels are normal and my ferritian levels are low. They told me I have beta thalassemia minor and that i need to take iron in small amounts daily. This worries me because, i've read a lot on this issues and it says iron is not good to take. They have also told me that they think i am bleeding somewhere eternally and i feel like were getting no where. Come the end of this month i have to have a colonoscopy and endoscope done to see if i am bleeding somewhere. I have been out of work for over a month due to the issues my body is having. I am usually an athletic person. Ive played sports for as long as i can remember and now i dont even have the energies to walk very much, and like i said i am always tired and really cold. they also said i could have fibroid's and thats where the extra bleeding is coming from, but turns out its a small polyp in my uterus. Eh, i really hope these doctors find out whats going on, i really hate feeling the way i contently do ... If anyone has any advice on ways to eat or things i can do to make myself more comfortable I'd really appreciate it.   

Hello Krystal,

I'm somewhat similar to you in terms of the health issues you have mentioned. Low ferritin, anemia, IBS, tired, low sugar, often hungry but cant eat much, trouble sleeping on time, tingling (due to low BP),  etc.

I've started taking iron in small amounts, but i could never tolerate pills or syrups, so I switched to pediatric iron drops. I dont even take them daily, but as and when my tummy can handle it. My reports couldnt give us a clear picture as to whether I am truly iron deficient or not, but it seemed very likely since my ferritin is always low.

I have yet to get tested to see if it has helped, but i do feel somewhat better. Such low doses will obviously take longer to show results, provided that you dont have any other reason for the anemia (like internal bleeding, etc). Celiac can also cause malabsorption, so you need to be very strict about your diet too.

Probably Andy or someone else on the forums could guide you better based on your lab results, if you could post the values here.

:-)

Preety, what about iron infusions? You cant tolerate them? In my hospital there are always a few patients with this problem. They got once in awhile an unit of blood to give their iron a boost. Never tried that?

Krystal,

I also seem to react to everything i take, my stomach cant handle it. One solution for that is pediatric doses. Start really low and once your tummy adjusts to it, you can consider whether you need higher doses. Also alternate vitamins, so you dont take all of them daily.  Works for me.  :-)

I wasnt diagnosed with celiac, but i was on an elimination diet for about two years. I had problems with all grains including wheat/bread/flours, and also fats/oil/cheese/etc.

Now I have switched back to a normal diet, starting with plain wheat receipes to begin with, and I am doing ok. Sometimes a severe IBS diarrhea/constipation can seem like celiac. If you give your tummy a rest from everything that irritates it, it may start to behave again.  :-)   I also take an enzyme supplement with every heavy meal. At one point my lipase/amylase (digestive enzymes) had some problems.

Birth control - no way - i had to take it for several years for hormonal issues, and it was awful, didnt help either. I ended up with an endocrinologist, and it turned out I only needed medication for thyroid, prolactin.

Headaches - I get them almost daily, mostly migraines. But when your digestive system is stressed, and you're constipated, its very likely you will have a headache. I get them mostly evenings onwards.

But i follow a strict diet and the headaches reduce.

The most important thing is that stress/anxiety can give you a ton of unexplained digestive issues. Work on it first, if thats applicable to you.  :-)  Each time you feel stressed, tired or pain/discomfort, Close your eyes and deep breathe in and out 5 times.  Trust me, with habit, it calms you and your digestive system.  :-)  Also try some light stretching excercises when possible.

Drinking water doesnt always help me, if i feel very dehydrated, then I take electrolytes water. And i do need to rest for a day when i feel totally exhausted. I dont know why it happens, I totally burn out, and  I blame thal for it.   :-)

Muscle pains - I get them when i'm tired, not necessarily with the headaches, but remember even mental stress can cause physical pains if your muscles get tensed up and spasm. That can also cause headaches when the muscles at the back of your head/neck get stiff.

If you take painkillers daily for it, you end up with rebound headaches/pains. Like it becomes a habit for the body to hurt and take pills. So try to avoid that.

Very mild iron on a trial basis may not harm you, as I doubt it builds up that fast. An easy way would be to try it and get tested every few weeks and see if it helps. That is what i'm doing right now. The drops I take are for babies, they will take about 3 - 6 months to show noticeable results.  :-)

I'm not an expert, but these are things I have tried personally.  :-)  Hope it helps you in some way.  Please do feel free to ask any questions, thats what we all do here.  :-)

Thank you, for your response... I am afraid to take the iron because I don't want anything wrong to happen to me. I also was told not to start a celiac diet until I get the colonoscopy and endoscop to make sure. I have been taking Vitamin C and B12 daily and it seems to help, but my stomach hates medications and or vitamins. I feel like everything is hard on my stomach. I was also told to take birth control to help with endometriosis or this polyp, but even the birth control has iron in it. I've been keeping a food diary for months now, trying to figure out if its the way i eat that is causing my issues. So far all I get is nuts make it hurt when I have to pass a stool and grease foods make me constipated. My partner is always on me about not drinking enough water, so i've increased my water intake to to see if that helps.

- Do you ever get bad headaches, and with those headaches comes muscle pains. I get them and my muscles only ache with the headaches are present.

- I don't have all my blood work but i'll post the CBC's in a little while. i think that's what there called that the hematologist did yesterday   

Again thank you for your response

Dori,


Anything and everything can make me sick Dori, higher doses are ok if the body can absorb them. But are the side effects worth it?  I have problems even with simple paracetamol for fever!  If the side effects are much worse than the original ailment, its not worth trying (in my case).

:-)

Preety, what about iron infusions? You cant tolerate them? In my hospital there are always a few patients with this problem. They got once in awhile an unit of blood to give their iron a boost. Never tried that?

akeentruth,

Were you told to take iron because you have thal minor or because an iron panel of tests showed that you were iron deficient? Iron will have absolutely no effect on anemia caused by thal minor, so it has no value unless you are coincidentally iron deficient. I also don't understand why you would be told to not start on a celiac diet. It is probably the best way to learn if certain foods are causing trouble for you.

With the sudden weight loss and unexplained anemia, I think that blood loss has to be investigated as the most likely cause. The scopes may reveal some answers.

I was told not to fallow a ciliac diet until i had the colonoscopy and endoscop, to make sure i have celiac. I guess if i were to follow the diet before the procedure then if i had it my intestines would heal and they'd never know. I am going to attach some instant blood work the hematologist took a few days ago, but this is not the full panel i wont get the back until next week.

I was also wondering if Thal can cause a women or man to be delayed in puberty. I am 24 and I am barley starting to grow arm pit hair and getting taller.

Thal minor supposedly does not slow growth like thal major does, but my former employee's growth was definitely lessened and so was his son's. They are both thal minor. I doubt you can find a doctor that would agree that there is a connection.

I was wondering if, there was anything that you saw abnormal in the attached blood work file i attached a few days ago. I appreciate this site as well it is very informational. i had my colonoscopy and endoscop done today. they said i have himrroids and my intestines were bent and i have gastritis and they did a biopsy and will let me know if i have celiac in 3 weeks. I am greatful for this site and i am glad there are people out there looking into Thal and educating people

I agree that thal minor may cause delayed growth, but doctors will never believe the connection. Its best to meet with an endocrinologist who specializes in growth issues. Quite often, hormonal issues come in multiples, so its best to check if everything is ok.

Also I read somewhere that its possible to test negative for celiac, but still be gluten intolerant.

I was also wondering if Thal can cause a women or man to be delayed in puberty. I am 24 and I am barley starting to grow arm pit hair and getting taller.

Hi Krystal,

Your blood work was typical for thal minor. Iron deficiency could coincide but an iron panel would be needed to diagnose that.

Krystal
 me and my wife have thalas.minor and regard my wife some times the Dr give here some iron taplets daily dose spicially when she get pregnane .. some time the thalasimic PpL need iron but not for thalas. major
                                      khalifa
                               state of kuwait

Akeentruth, how are you doing now?