Are these symptoms Thal related?

Well basically I am 22. Ever since I was 16 I have been to the doctors to find out what's wrong with me. After many blood tests I found out that that everything was alright except...that Im a carrier (minor). Here are the symptoms I have been having -

1) Cold hands and feet
2) Pale colourless skin*
3) Erectile dysfunction
4) Thinning hair/hair loss*
5) Extremely sensitive skin/mild acne*
6) Depression
7) Tiredness
8) Very dark circles/dull eyes*

The ones that I have put a star next to is the ones that are really getting me down. Its making me cry sometimes of how unwell I look. I get plenty of sleep. I take iron. I jog every other day. I drink lots of water. Is there anything I can do about this? Any supplements that might help? Please help!

Hi Ricky,

Yes, many of your symptoms are commonly reported by thal minors. See the thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26748#msg26748

Are you taking iron for a reason? Iron will not help thal minor at all and if taken long term when not needed. If you have not had a series of test called iron studies done, you should stop iron immediately until you can verify your status.

Folic acid, B complex, vitamin D and E are all very important. If you can, get your vitamin D level checked. It is probably the most common deficiency on earth. If your level is below 30, supplements are needed. I take 5000 IU daily to address my deficiency and it has made a big difference. Also, look through the thal minor section for ideas on how to improve your health. Because of #3 on your list, I would also suggest something to improve nitric oxide (NO) levels, as this is a cause. In fact, viagra (sildenafil), which was developed as a high blood pressure med, increases NO levels. I would suggest L-carnitine.

Yeah. I feel you bro.
Really Pale skin. CHECK! Sometimes people say I am blue or green
Cold hands and feet. Check.
Thinning hair. check (even when I was a teenager)
Tiredness. Check
Depression Check (But more anhedonia and lack of excitement and motivation. No sadness)
Erectyle disfunction. Used to have it, but it was more psychological. dont have it any more.
Very dark circles CHECK! This is bumming me out really badly. People think I am a drug addict.
Sensitive skin. Check. My hands are always cracking and are always itchy. But skin on my face is perfect.


Heres what I am doing for this:

Thinning Hair - Propecia
Tiredness - Wellbutrin, Vitamins, Supplements
Wellbutrin will also help with depression and erectile dysfunction. (Its a prescription medicine).

Pale skin - You can try tyrosine or l dopa which are precursors of melanine, It could help.
Tyrosine and l dopa are also precursors of dopamine and norepinephrine, but they wont help that much for depression. Maybe a little.

Also exercise would help.

I ll try some of the supplements that are advised in this forum to raise hemoglobin and see if they are gonna help.
 

As far as pale skin, part of this is lower circulation to the extremities, but I am curious. Does it help to get sun? Does the color improve?

For myself I notice that in summertime I feel better. Because sunshine produces Vit.D also. And my skintone improves. And I am not someone who is baking in the sun, most of the times you find me in the shadow. But when I can go outside, my energy levels improve and I am feeling less depressed. So sunshine defenitly works for me!
And btw thal minors also can suffer from joint pains. For example: I have arthritis in both my knees for almost 2 years know. I am under controle of a reumatologist, who is also very familiair with thal. And this arthritis is because of the thal. It is known that minors can have these pains.

For myself I notice that in summertime I feel better. Because sunshine produces Vit.D also. And my skintone improves. And I am not someone who is baking in the sun, most of the times you find me in the shadow. But when I can go outside, my energy levels improve and I am feeling less depressed. So sunshine defenitly works for me!
And btw thal minors also can suffer from joint pains. For example: I have arthritis in both my knees for almost 2 years know. I am under controle of a reumatologist, who is also very familiair with thal. And this arthritis is because of the thal. It is known that minors can have these pains.

I didnt know my joint pains were related.
I am taking condroitin, glucosamine & MSM and also omega 3,6,9 for my joints. It works pretty well.

Hi Ricky,

Yes, many of your symptoms are commonly reported by thal minors. See the thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26748#msg26748

Are you taking iron for a reason? Iron will not help thal minor at all and if taken long term when not needed. If you have not had a series of test called iron studies done, you should stop iron immediately until you can verify your status.

Folic acid, B complex, vitamin D and E are all very important. If you can, get your vitamin D level checked. It is probably the most common deficiency on earth. If your level is below 30, supplements are needed. I take 5000 IU daily to address my deficiency and it has made a big difference. Also, look through the thal minor section for ideas on how to improve your health. Because of #3 on your list, I would also suggest something to improve nitric oxide (NO) levels, as this is a cause. In fact, viagra (sildenafil), which was developed as a high blood pressure med, increases NO levels. I would suggest L-carnitine.

As far as pale skin, part of this is lower circulation to the extremities, but I am curious. Does it help to get sun? Does the color improve?

For myself I notice that in summertime I feel better. Because sunshine produces Vit.D also. And my skintone improves. And I am not someone who is baking in the sun, most of the times you find me in the shadow. But when I can go outside, my energy levels improve and I am feeling less depressed. So sunshine defenitly works for me!
And btw thal minors also can suffer from joint pains. For example: I have arthritis in both my knees for almost 2 years know. I am under controle of a reumatologist, who is also very familiair with thal. And this arthritis is because of the thal. It is known that minors can have these pains.

Well I started taking iron because I thought it would help but I don't think it is so I will stop. As for sunlight I live the U.K, furthermore I live in Manchester which is like rain capital of England hehe so sunlight doesn't come much often. However it is now summer and we are getting some sun so I will monitor my skin when I go out jogging. I will start taking Folic Acid because it has been recommended on another site by Thal minors. I do have a question though. What blood tests should I get done from the doctors? The doctors here in England quickly dismiss the symptoms I have been having in relation to my Thal minor which is quite annoying tbh.

Yeah. I feel you bro.
Really Pale skin. CHECK! Sometimes people say I am blue or green
Cold hands and feet. Check.
Thinning hair. check (even when I was a teenager)
Tiredness. Check
Depression Check (But more anhedonia and lack of excitement and motivation. No sadness)
Erectyle disfunction. Used to have it, but it was more psychological. dont have it any more.
Very dark circles CHECK! This is bumming me out really badly. People think I am a drug addict.
Sensitive skin. Check. My hands are always cracking and are always itchy. But skin on my face is perfect.


Heres what I am doing for this:

Thinning Hair - Propecia
Tiredness - Wellbutrin, Vitamins, Supplements
Wellbutrin will also help with depression and erectile dysfunction. (Its a prescription medicine).

Pale skin - You can try tyrosine or l dopa which are precursors of melanine, It could help.
Tyrosine and l dopa are also precursors of dopamine and norepinephrine, but they wont help that much for depression. Maybe a little.

Also exercise would help.

I ll try some of the supplements that are advised in this forum to raise hemoglobin and see if they are gonna help.
 

What are the supplements that have been advised to take?

Ricky,

Your answer confirmed what I suspected.

Get your vitamin D level tested. If it is below 30, you need to address it with either supplements or vitamin D shots. It does not move upward easily, and I have found in my own case that not much improved until I started on 5000 IU daily. Doctors are finding that once per month administration of 50,000 IU of vitamin D does have a strong effect, although it may take several months to get the level up to normal.

Well I started taking iron because I thought it would help but I don't think it is so I will stop. As for sunlight I live the U.K, furthermore I live in Manchester which is like rain capital of England hehe so sunlight doesn't come much often. However it is now summer and we are getting some sun so I will monitor my skin when I go out jogging. I will start taking Folic Acid because it has been recommended on another site by Thal minors. I do have a question though. What blood tests should I get done from the doctors? The doctors here in England quickly dismiss the symptoms I have been having in relation to my Thal minor which is quite annoying tbh.

What are the supplements that have been advised to take?

I live in the Netherlands, which is also rainy country. Instead of taking vit D, you can also go under a solarium once a week when there is no sun outside.
Folic acid 0,5 mg a day is recommended and if you're Hb is dropping, vit B12 shots once a month.
For pregnant women: folic acid 5 mg a day and vit B12 shots once a month starting at the beginning of your pregnancy.
Iron doesn't work, it can even damage your body.
Usefull bloodtests are also your ironserum, ferritine, iron saturation, magnesium, sink, glucose

I just wanted to reaffirm that taking vitamin D has helped my mood  greatly..and energy quite a bit also
B complex vitamins dont seem to help that much but of course I still take them

If its not crazy hot outside I tend to go for a short brisk walk that helps with my color..alertness and elevates my mood

Today is the 1st day its been even close to hot this season and its 90! So no walking today!! hehe

All these years (diagnosed 35 years ago) and I never heard of my ghostly pale skin being related to thalassemia.  LIke, knowing this helps anything  it's just as interesting to learn it might be connected to my thalassemia.  I guess I'll have to quit blaming the Father I never met.
Also, I have thin hair that gets thinner every ear, am tired, get depressed easy and have arthritis or some such something causing joint pain now.  It is 24/7 and has been around several years.
Something else I read somewhere, ear problems.  Anyone have ear problems?
Hope you're all having a great day!
OldThalGal

I look ghostly pale the second i start feeling tired. Rather, being tired turns me pale. I especially cant be on my feet long. LIke all the blood feels like its gone down into my legs and left my upper half empty!  Dont know what to do about that. When i'm lightheaded, I sit or lie down.

What kind of ear problems? Well I get a slight fullness/pain  in my ear when I have vertigo - I dont know which comes first though. But ear drops seem to help me at that time. 

Is there a way to prevent arthritis? Any specific exercises or diet? I dont have it but I do get aches and pains which last few days and I wonder if i'm developing arthiritis? 

Thin hair is also an issue - but mine was caused my repeated scalp infections or eczema kind of skin. Using a medicated solution on my scalp helps.

A lot of anemic thals are prone to minor infections - and a lot of my health problems are attributed to infections. Be it scalp or ear or throat or skin....  Even a terrible backache can sometimes be caused by an infection somewhere.

Working on immunity seems to make it easier. :-)   I'm trying an indian ayurveda immunity booster called Chawanprash. It looks like a dessert.  Also turmeric powder in hot milk, at night before bedtime - is also said to improve immunity.

Stress and Sleep are 2 things we need to be careful of. When i'm sleep deprived if I'm unwell, i wake up with joint pains, especially in my finger joints. But it settles soon.

35 degrees here, but its too hot for me.  Taking Vit D, but not sure of any changes yet.

:-)

Love to you all!
 

also B complex vitamins dont seem to help that much but of course I still take them

The best way to take vit B12, cause that's the one you need, is bij injection. The injections are called hydroxocobalamine injections. Prescribed by your docter.

For the people with pain in their joints: Let a reumatologist look into this. Because my aunt thought her pains were thal related, but she has also reumatoide arthritis, which is a much severe disease than arthritis and NOT thal related! Now they discovered this a bit late and some of her joints are grown together (ankle and back) which vannot be undone!

I was checked by a rheumatologist and his conclusion was arthritis. Arthritis is thal related. You can't use a diet to prevent this or take some medication to prevent it. When you have it, the most important thing is: keep moving! Walking, cycling and swimming are very good sports for your joints. And you can do them outside! So also good for your skin.

The difference between reuma and arthritis (most of the times) is that reuma starts in the small joints (fingers, toes) and arthritis can start in the big joints (knees, shoulders). But arthritis can also start in the small joints! So for those who have pains in the small joints, don't think you have reuma jet!

Good painkillers for arthritis are the inflammatoire ones like NSAID's (ibuprofen, naproxen. But: don't take these when you have stomach or bowl problems! And you cannot take these with some other meds. So talk to your docter first.