Are you an Alpha Thal minor,trait or carrier?

Hello I know that is kind odd to ask  and probably most of us don't know about it.But I m trying to study the matter ( for myself and family and group) about thallassemia Minor and what kind of deletion symptons .
I didn't have an electrophoresis done but a DNA test done and this is the only reason I know that my case is called Homozygous -3.7 in other words I have received from my mom one deletion and from my father one deletion also so my hemoglobins  are -3.7/-3.7  I actually don't understand exactly why they name like this but this is my DNA test and they said all my children will receive it once my both genes are defective.
So my two children are like  my parents carriers(if my husband is not a carriers also)
Anyways I don't want to confuse you about my question.
What I want to know is if you are an alpha thal carrier( one deletion),trait ( two deletion) if you know the DNA test scripting for it ( alpha-/-alpha),(--/alpha alpha),(-alpha/alpha alpha) etc..
And how it has impacted your life or not.
Looking online I don't see much of information,so I'm trying to understand if more symptoms or lest symptoms is a matter of each different deletion on alphas. If you guys have the same curiosity or even see it like a good study ,share your experience with me on this topic.
Danny.H

The -3.7 refers to the point on the gene where the deletion occurs. There are two types of alpha thal minor, cis and trans. In cis, both genes are deleted from one of the tweo gene clusters. In trans one gene is deleted from each cluster. All children of trans carriers will carry one alpha deletion.

It would be informative to see if there are differences between alpha thal minors of the two different types.

Hello Andy
Thanks for clarifying my post 
My question is : do you know if  you  are a trans  or a cis  alpha  thal?
Are you homozygous or heterozygous ?
If you are homozygous what are your symptoms if you are heterozygous what are your symptoms?

In a cis deletion, both genes from one cluster are deleted. In trans deletions, one gene from each of the two clusters is deleted, as is the case with two -3.7 gene deletions.
Heterozygous refers to the deletions being on separate clusters, while homozygous refers to both genes on one cluster. Using the term homozygous with alpha thal can be confusing though, because technically when all 4 genes are deleted, it is a homozygous state, also.

I'm a homozygous a-thal (two deletions)

My minor trait causes me to become more easily tired and have cramps all over my legs in cold weather or whenever I have over exercised.
The deletion took place on multiple chromosomes. I had a paper somewhere which says all that info , but I have to clean up the mess in my room and don't know if I already threw it away 

Hoped this helped you a little bit with info

Hello Bluebird ,
Thank you for the info.

Like you Bluebird I'm also a trans two delections one from each parent and I'have had some problems during all my life but I wasn't aware that probably it was because the thallassemia and the doctors never pointed problems they just said I was always anemic. Until I reached the age 37 and had problems  during all year .i don't know if is really true or not that I didn't have iron storage even taking iron as much as the doctors said to me to take. I just remember lots of pain always cramps ,at the point that I couldn't functioned  at the top of this I got a lots of gallstones and gallbladder inflammation. I was going to a MD doctor and to the hematologist mentioning my pain and frustration but was talking with coworkers that they point the fact that I had to get hid of my gallbladder,after a visit to the ER my doctor finally got it . Surgery passed I was reading here why thals have gallbladder issues. Now I have an awesome naturaphatic  doctor that is use to treat thals and even has thals in his family. The last two years has been difficult some days I'm struggling . Some days are wonderful.
My doctor pointed the fact I need to exercise however I get bruises on my legs by the minimum I do so mim trying to Swimm once a week that is helping . I feel more energy after a day or two but at the end of the week sometimes I just feel like staying on bed. Because my parents never complained of symptons this makes me think that our two delections one from each parent  makes more symptomatic .what you think ? It will be good if we can find someone cis to check it out if this is the same case with two delections from just one parent .

Hi Danny,

I am heterozygous for a gene mutation: alpha2-globin gene polyadenylation (poly A) signal (AATAAA-->AATAAG) mutation (alpha(T)alpha). Rather than a deletion I have a mutation! Apparently there are many mutations but from my understanding they occur more often for b thal minors.  So much to learn.

I am in mid forties and I only recently established my thal status via DNA analysis (that I insisted after speaking to numerous doctors who were ill informed). Many of the doctors I visited were not/are not aware  of thalassemia or how to read my FBC results and knew little about alpha thal minor let alone its symptoms - they kept saying I did not  have b thal and hence I did not have thal.   So for years I had a mystery that I had not solved - why my blood cells were microcytic and hypochromic and my Hb, MCV, MCH on the low end when I was not iron deficient.

Doctors are interesting! From my experience very few are up-to-date with research or frankly interested in it (not generalising, just writing about the ones  i have come across over the years). Having a research background myself I have always tried to get to the bottom of things and often rock up to the doctors with the latest research.  I do not think this approach is very effective though.  I took one of the papers Andy had listed on this site on thal minor symptoms (as I have been told thal minors are ASYMPTOMATIC) and the doctor did not even look at the paper!!!!!!!!!

After connecting to this site I feel that I have found my thal family (which has been so incredibly useful - thank you Andy for your tireless efforts).  I now realise that  MANY of my symptoms are due to my alpha thal trait and am not so hard on myself anymore.  I have always been a high achiever yet I crash easily even though I have been taking really good care of my health.  At uni I had glandular fever which last a long time and over the years I have found that my physical energy and mental energy were mismatched.   So I have had to make adjustments when planning my personal and professional goals as I cannot burn both ends of the candle so to speak; not knowing I was alpha thal minor at the time.  Knowing why now is a huge relief . Furthermore my 10 yr old who we suspect has the same mutation as me can learn about her condition and how to look after herself and pace her life.. 

I now also understand why sleep deprivation really knocks me out and why I struggle to function if I do not get my 7-8 hrs - not good!  As a busy mother now I embrace my afternoon cat naps - they are part of my health plan. I plan my days differently - slow but steady suits me fine!!!  Oh and I now know why serious exercise  is not good for me; so I stick to my mild exercise plan now.

Stay well.

On the subject of sleep, I've had many thal minors tell me that taking a short afternoon nap whenever possible really helps.

Hello SaltySea,
Thank you for your info .. Yes I understand how we need to be careful and not to do too much. I'm a mother of two   Now they are 5 and 7 and I will be Fourty this coming March.
The last 4 years for me have been difficult you can check it out my posts .
I did the same I printed everything I copied URLs but my MDs  are busy too busy to read. Takes time sometimes is confusing even for us .
I have been puzzled my MDs because they read something on their books and see other thing on me . They know for a long time so they know I'm not kidding about my syntomns ,but at the same time they just cannot help me if they don't gave time to check this awesome place that Andy put here for us. So I God put on May way a naturopathic Doctor that know how to treat my thal . I'm very happy to tell that my blood work is Much better than when I first started. I still suffering from body pains it looks like they are always present but my emotional dictates when they came full strength or get dull. I passed 4 days on bed this last week. Got better but need to be careful with emotions .when this happens I feel weak. This was my first crises this year. March I'm going to see a rheumatologist doctor .I will try to be optimistic and see what happens . Of course I'm expecting to be diagnosed with whatever thing .they don't believe it has nothing about alpha thal .   

Daniela,

Last year, I started taking turmeric and black pepper capsules for pain, replacing ibuprofen. Turmeric has worked really well for me for body pain and it is also one of the most beneficial herbs of all, so there are many other reasons to take it. When the pain was the worst, I took 2 capsules 4 times a day. It really helped a lot. The conditions causing the pain eventually resolved for me, but I was back taking them again this week after having to shovel a lot of snow.

Hi Daniela,

Thanks for sharing your story. Like Andy I also take turmeric capsules with ginger and black pepper and they have helped me with inflammation and they are great for one's immune system. I also take magnesium tablets and try to drink lots of green smoothies and eat a very plant based diet with some meat (I try to follow a traditional Mediterranean diet - it works well for my Greek genes). I prefer to eat my way to good health and take supplements where necessary and am learning to manage stress better; still working on this one..... Different approaches work for different people though.

Like Andy mentioned in one of his great posts, thals have little "margin of error" with their health so being proactive about my health is really important to me; as I cannot change my alpha globin mutation but I can make other lifestyle changes to optimise my salty sea genes.

I was catching up with a mum friend today who is not a thal.  She is often unwell but she said that she is not proactive with her health and just deals with the symptoms by taking lots of medications; she said she has no time for her health.  This attitude is not uncommon amongst many people I know; so in many ways being a thal has made me a healthier person overall because I am so much more aware of my body and its needs.

Stay healthy.
Salty Sea.

I will take good food and supplements over drugs any day of the week. Yesterday, I was having some annoying joint pain in my knees (probably a result of the winter weather and shoveling deep snow that caused it), and I took a couple turmeric capsules. I realized this morning that I hadn't had anymore pain after taking the turmeric.

Hello Andy and SaltSea,
Thank you for the suggestions. I'm not positive I will be able to use turmeric and black pepper. Since I started my naturopathic treatment I did a an allergy test And virtually I cannot have any spicies including very basic stuff like onions and garlic. I have had feeling much better avoiding stuff even if I have low allergies to it I have been a vegetarian mostly vegan through all my life , never smoke drink or use drugs ,I. Do not suffer from inflammation , I do have a very clean diet going raw for seasons .This is what really make me fell annoyed cause I really not even touch  sugar   Around  4 years now.Also I don't like and virtually just use pain medication in very last case  I use to handle pain very well however after pregnancy and couple years ago already suffering from chronic pain and gallbladder issues ,it has been such annoying feeling to deal with it. I have been at the rheumatologist, doc is sure I have fibromyalgia just got some blood work done to rule out some  causes .... The doctor gave the directions I have been taking ....exercise very low impact for months and go building up on the aerobic exercise and warm baths during the flares each I already do. However my flare ups comes and goes . At least this doc is not a take meds one. Praise the Lord. Well tomorrow I'll be talking with my naturopathic doc and see what my kemistry looks like and what we can do in terms of supplements .I will keep you post.

Concerning onions and garlic, I have often wondered if they have a potential to cause hemolysis in some thals because they both can do so in cats and dogs. Then just this week, I heard from someone else who has stopped eating onions and garlic just for that reason. Turmeric does not share this property and is a powerful antioxidant. Turmeric is also commonly used by naturopathic doctors. If you are able to use spices again, it is the most valuable to the health of all spices.