Does thal minor come and go or flare up and recover?

So as im looking at mine and my daughters past cbc tests sometimes the scores are all exactly perfect. Sometimes they are completely out of wack.

Though were are just learning the implications of thal in our lives. Looking back at my history and my bloodwork. I had been on my way to a lupus diagnosis though no one was certain because my ana never proved. But i wpuld have flares of tired muscle weakness mental fog somwtimes breathing ir bowel problems. Then it would go away and id be super mom again.

Is this consistant with thalassemia?
If so what causes the bouts?

I would have to see the CBC reports to comment.

Please don't get annoyed...again, but these are the symptoms of Fibromyalgia.
I have this too. There is help and treatment for this. Yes thal minors have real symptoms and this is equally real too. Please read up to understand better.
There are many people who are not carriers of the thal trait but they have this condition. Thals could also have this condition.

@Emby

Oh god, not this again...

@Marymanard

I experience the symptoms exactly like you describe them. I was searching for Thalassemia Minor and found this Youtube channel of a woman: https://www.youtube.com/channel/UCn0y9cnzfORvpjyU_Xt-mhw

I don't think her scientific explanations teach us forum users anything new and I didn't check for correctness, but her personal accounts are very interesting. Apparently she served in the army for a few years and even though she easily passed a fitness test, she had problems during her time there. She also speaks of periods of high and low energy and calls them "anemic episodes". This is exactly how I personally have been experiencing Thal Minor. My personal experience has been that an ongoing stress on the body slowly decreases the total amount of energy I have each day after a while. I could see this especially well because I was lifting weights for a few years and always had problems to fully regenerate. I think if steady enough, even a way smaller load on the body can already cause problems over time.

Unfortunately, I only got my blood tested during a period where I didn't do any sports, didn't have to work and therefore could rest a lot and felt very good. Aside from high liver values, my hemoglobin wasn't too bad thanks to a higher-than-normal RBC count. To get a graps on what exactly happens that causes these anemic episodes or states, I had thought about the following:

• Fully recover until you feel fine, e.g. by doing a longer vacation or something
• Get your blood values checked
• Start doing a sport or something that puts stress on the body (of a Thal) and do it on a regular basis
• Get your blood values checked at short intervalls
• See if anything has changed

That was my plan.

Edit: Looking at your other topic, I'd do as Andy recommends!

It's good to have Vit. D and Vit. B12 levels checked too.
I take these and my levels are all within the normal range. My Hb is 10.5 which is normal for me but I have the same effects on my body as you've described.

That's the same with me.
It's waking with pain and ending the day like a zimmer frame might help.
Not all days though.
Holding a ladle and serving plate, for example, that too makes my arms hurt. Doing simple things that shouldn't cause pain does cause pain. But it's not every single day that thud happens. Just most days.

And like I said, I've had regular blood tests, all blood checks are normal.

My Hb is 10.5 which is normal for me

This sounds pretty low to me. Who said this was a normal level? I guess many doctors probably tell a patient their hemoglobin levels are 'normal' – even if they are low or lower than the normal range. I personally think those levels can already influence the QoL and cause symptoms. My doctor told me I'd 'live 100 years with my values' and when I looked up some of the liver values, they were higher or as high than those I found in articles about steroid users!  

The only 'promising' approach for 'treating' Thal minor would be giving the patient a medication that increases hemoglobin. There is a number of hormones that can do that, usually by increasing the erythropoiesis.

Problems:

• They are rather dangerous and can have numerous side effects. I'm not sure many doctors would see anything positive after doing a risk-benefit analysis.
• They are rather expensive, especially something like erythopoietin.
• The erythropoiesis in Thal minors is not as effective as in normal people.

It's easier for doctors to point at "Fibromyalgia" or tell you your values are 'normal' because they then don't have to prescribe those expensive meds.

[Please correct me if I said anything wrong!]

It's like I said. My Hb level is normal for *me*, Alhamdulillah ❤  .
That's my best. I've been lower but just a couple of years ago I've been walking on sky nine with a Hb of 10.5, Alhamdulillah ❤ .

My point is that there are many people who do not have the thal trait but they have these very same symptoms. Would that mean that it is because of thal...
Fibromyalgia is not something that doctors diagnose people with generally. I'm not aware of anyone I know having it.

My blood results are *my* normal...without the doctors telling me it is. Everyone is different and what's normal for me may not be normal for others.

❤

I have thal minor and am deficient in B-12 and D. It may not be the same for you, but I can definitely say that I "flare up", or rather "fog up" more when I'm working my body more and when I don't drink water constantly. It's especially bad if I forget my B-12 pill for the day.

Rachel

From my experience, my hemoglobin levels have always been consistent for long periods of time, except during pregnancy. I used to run 10.1-10.2. Now in my 40's I'm running 9.3 all the time. However, I definitely had and have times of what I would call flare ups that don't seem to be related to the numbers. Definitely your body can be using resources to maintain consistent values during higher stress times. So even though the numbers aren't moving, stuff behind the scenes is being affected.

It's interesting to me that the three girls in my family who have the same beta-0 gene have totally different symptoms and Hb levels! Also, how some people in the same family with the same affected gene have thal-minor, while others have thal-intermedia. Obviously there are other things at play that affect thalassemia. Based on my experience, tests, research, etc., I think a lot of it comes down to oxidative stress - which also probably has a lot to do with other difficult to diagnose/treat conditions like fibromyalgia and lupus. (I know there are better tests for lupus, but I've heard of someone testing negative for the antibody after lifestyle changes when they'd tested positive for years before that. That's not supposed to happen.)

Since the lab values in my family have traditionally not fluctuated so much, I don't have a lot of insight there. But I wonder if you take note of other things going on at the testing times if you could start to identify things that possibly cause enough stress for your girls' little bodies to not be able to keep up with Hb and RBC production. If you could pinpoint anything, you might be able to help boost them during those times with certain foods or supplements.