New

  • 12 Replies
  • 14097 Views
New
« on: May 19, 2008, 05:46:49 AM »
Hello,

I'm a 29-year-old female from Seattle. I have not received a proper diagnosis for thalassemia, and feel I'm grasping at straws. Here's my (kind of long) story.

When I was 10 years old, I started losing my hair. It started slowly, but by the time I was 12 years old it was quite noticeable. By my 13th birthday, I'd lost close to half of my hair. It's not alopecia areata, which would cause bald patches...this strongly resembled male pattern baldness, but I wasn't smooth bald on top. My scalp was visible all around. Middle school was an absolute nightmare. My parents had their own issues and didn't do anything about my problem. I'd always taken multi-vitamins, but when I was about 16 or so, I learned that I had low ferritin and I went on a stronger iron supplement. When I was 18 and on my own I made appointments with doctors to find out what was going on with my hair. I was also experiencing extreme fatigue, cold extremeties, difficulty concentrating, and muddled thoughts. I used to have an excellent memory, but now I can't even remember things I've done or said earlier in the day. I feel constantly in a depressed fog.

When I was 19 I began seeing a doctor who wanted to test me for thalassemia. All that my test concluded was that I possibly had the trait. I didn't think much of this. My doctor quit practicing and I was no longer on top of it. I continued taking iron supplements.

I didn't get my ferritin checked again until I was about 27. Once again, low ferritin. I told my doctor that I was taking iron supplements, and she told me to take 60 mg elemental iron (300 mg ferrous sulfate) 3 times a day. I began a regimen of 65 mg (325 mg ferrous sulfate) 3 times a day. That's on top of my multi-vitamin with 18 mg elemental iron. I have done this every day for two years. Last week I learned that I STILL have low ferritin.

My hemoglobin levels were in the normal range, but I have microcytic anemia, which can be caused by either thalassemia or iron deficiency. My father and my aunt had microcytic anemia. To the best of my knowledge, my father did not have iron deficiency. I don't know about my aunt.

I just got a referral to a hematologist, and my blood was drawn last week for a TIBC and some other test...something else to do with iron.

Would thalassemia trait cause this lack of absorption of iron? Is that characteristic? What about my weird hair loss? I had a scalp biopsy that said that I don't have a fungus, and I probably don't have androgenetic alopecia or alopecia areata....I have "alopecia not otherwise specified." I have now lost a bit more than 2/3 of my hair. I haven't been able to leave the house without some kind of head covering in 10 years.

My thyroid tests are always normal. My androgens are always normal. I had a negative ANA test (so it's unlikely that I have an autoimmune disorder). Hemoglobin is normal. The only things ever wrong with me are microcytic anemia and low ferritin.

I feel terrible all the time, and I know my hair isn't growing back, but in order for me to come to terms with this and other things, I really need to find the cause of all this. I hope someone here can help. I don't know what to ask my hematologist. I'm so nervous. If you've read this far, thank you.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: New
« Reply #1 on: May 19, 2008, 06:29:06 PM »
Hi catfancy and welcome,

There is no connection between thalassemia and iron deficiency. A thal minor can be iron deficient but it's not because of the thal. Just like anyone else, a thal minor can become iron deficient. I was going to ask about your thyroid because of the hair loss, since my bad thyroid caused total hair loss for me, but you've had yours checked. We do hear a lot about minors having hair loss but have never heard any good reason why. I would like to know the results of your iron studies before commenting any further, as they will determine more accurately if you do have iron deficiency.
Andy

All we are saying is give thals a chance.

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: New
« Reply #2 on: May 20, 2008, 04:16:49 AM »
Hi catfancy,
:welcome
I'm sure a healthy, well balanced and Iron rich diet (provided that your test results show real Iron deficiency)  and plenty of fresh air exercise is all you need.

Forget your worries, stay happy and enjoy your time with your family and friends
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

Re: New
« Reply #3 on: May 20, 2008, 05:35:19 AM »
Thanks for your responses. I got the results of my iron studies today.

IRON, SERUM     125     55-155 ug/dL
Iron Binding Capacity, Direct    333    270-400 ug/dL
Transferrin Saturation, Direct    38    15-50 %

So, everything was normal. I guess that means I'm not really iron deficient? I have no idea what's going on. My ferritin has been between 12 and 19 for the past 10 years at least.

*

Offline maha

  • ****
  • 424
  • Gender: Female
Re: New
« Reply #4 on: May 20, 2008, 08:45:40 AM »
Hi catfancy
You should try wheatgrass spray on your scalp. Recently I had read a newsletter wherein a little boy of five was losing hair due to unexplained causes, to the extent that his scalp was all patchy. There was nothing the doctors could do and said it was alopecia. On using the wheatgrass spray for one whole year the boy now has head full of hair without any patches. The newsletter was from www.drwheatgrass.com, a reputed company. Many of us on this site are using wheatgrass as a hb inducer. Do check the site.
Maha

*

Offline nice friend

  • Thalassemia Major
  • *
  • 2836
  • Gender: Male
  • If I Can, Why Not You??... If I Can U TOO !!!...
Re: New
« Reply #5 on: May 20, 2008, 09:21:40 AM »
Hi Catfancy :
Welcome  to this  thalassmia  patients and friends ..............
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: New
« Reply #6 on: May 20, 2008, 03:13:31 PM »
Hi im a 30 year old from wales in the uk, i am currently pregnant with my third child but have just had a hb electro test that came back as iron deficiency but not to exclude the thallesema trait. im confused to whether i have the thallasemia trait or do they do more testing? they have requested that my husband has the test. throughout my pregnancies i have always been plagued with low hb in my second pregnancy it dropped to 7. this time my ferritin level is below 3 but my hb 9 but i know it will drop even further. unfortunately i can not tolerate iron it gives me servere ibs i eat red meat greens etc and i eat foods and drinks containing vitamin c i have had been treated for low hb before and inbetween pregnancies just really confused with the whole situation. im 27 weeks pregnant

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: New
« Reply #7 on: May 20, 2008, 03:29:40 PM »
Hi jemstu and welcome,

The low Hb during pregnancy is common among thal minors, so I do think you should follow up on this and verify if you are thal minor. The request to have your husband tested is to make sure he is not also a carrier, as two carriers have a one in four chance of having a thal major. You should also have iron studies done to determine if you have an iron deficiency before you take more iron. Iron is useless if you don't need it and since your stomach reacts (like many people's stomachs) badly to iron, it should be avoided if possible.

If it is determined that you are a thal minor, it may be necessary for you to have one or two transfusions during the pregnancy if your Hb drops so low. An Hb of 7 is not safe for a pregnant woman, and may also endanger the baby.
Andy

All we are saying is give thals a chance.

Re: New
« Reply #8 on: May 20, 2008, 05:13:54 PM »
Thankyou andy some sense at last, What implications would thallesemia minor have on the baby or me? i suppose it would expllain the low hbs and ferritin im new to this im so glad ive come across this site. do you think they may suspect thalessimia minor what tests will be done, sorry to keep asking questions
Thanks again

Re: New
« Reply #9 on: May 20, 2008, 06:25:36 PM »
Please don't think I'm being hostile or rude, but wheatgrass will not cure alopecia. Over 50% of alopecia areata cases correct themselves within a year. This is a well-documented fact -- feel free to look it up. It's not the wheatgrass, it was his antibodies fixing themselves. Also, I don't have alopecia areata. I never have.

An "iron-rich diet" and exercise won't help me either. I already have an iron-rich diet. I already exercise.

I've been dealing with this almost 20 years and I've heard every ridiculous suggestion in the book. I'm tired of people's ignorance, and I don't want to be snippy, but please understand where I'm coming from and massages, oils, wheatgrass, etc, are not going to make my hair grow back.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: New
« Reply #10 on: May 20, 2008, 06:36:34 PM »
I take wheatgrass daily. Umm...look at my pic. Maybe if I try growing it right on top of my head?  :rotfl
Wheatgrass has a lot of good properties but it won't grow hair. It is used to help treat varying skin conditions but even there, no cure is claimed. Hair loss can be caused by many factors. In my case, the hair loss seems to be some combination of a very bad thyroid and the resulting effect on my ability to metabolize vitamin A in my liver. I hesitate to attribute hair loss to any one specific cause.
« Last Edit: May 20, 2008, 07:03:01 PM by Andy »
Andy

All we are saying is give thals a chance.

*

Offline Narendra

  • ****
  • 462
  • Gender: Male
Re: New
« Reply #11 on: May 21, 2008, 01:11:39 AM »
Thankyou andy some sense at last, What implications would thallesemia minor have on the baby or me? i suppose it would expllain the low hbs and ferritin im new to this im so glad ive come across this site. do you think they may suspect thalessimia minor what tests will be done, sorry to keep asking questions
Thanks again

Hemoglobin Electrophoresis is the test done for diagonising Beta Thal(minor). It is difficult to diagonise with low ferritin as it throws off the results for Hb  levels a bit.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: New
« Reply #12 on: May 24, 2008, 06:32:20 PM »
Jemstu,

If you have not already had it done, please do insist that the hemoglobin electrophoresis test is done, as Narendra has suggested. It is not normal for Hb to drop so low during pregnancy and the cause needs to be discovered, whether it is thal minor or iron deficiency or some other anemia, such as folate or B-12. Testing for those is also routine and should easily be done. I realize how frustrating it is to not get answers, especially when the doctors take such know it all attitudes and brush off your concerns, but it is YOUR body and you have every right to find out why your Hb has dropped so much.

It is not recognized by the medical profession for the most part, that thal minor women can and often do have problems during pregnancy. We have heard far too many reports here to accept the idea that a pregnancy for a minor is no different from a non carrier. Moms need to continue to inform their doctors. Maybe some of them will actually record a connection between thal minor and problems in pregnancy. It seems this will be the only way to get any notice. Patients need to speak up and voice their concerns. It's one thing for a doctor to dismiss a single patient, but they can't continue to dismiss all patients if they hear the same things over and over. It may take a 'grassroots" campaign by patients to make some changes but if this is what it takes, it's what will have to be done. Maybe at some point, we will find some doctors who are willing to listen to moms affected by low Hb during pregnancy and then find some real solutions.
Andy

All we are saying is give thals a chance.

 

SMF spam blocked by CleanTalk