Study Finds Thal Minors do Have Symptoms

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Offline Andy Battaglia

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #180 on: April 13, 2017, 11:09:52 PM »
A daily vitamin usually has insufficient amounts to do enough good. I have compiled suggestions at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774
These are adult doses, so adjust for the child's age and weight, usually 1/4 to 1/2 of the adult dose. Most important are components of red blood cells, like folate and B vitamins and antioxidants, especially natural vitamin E. Avoid any supplement containing iron, unless iron deficiency is also present, as indicated by a full iron panel of tests.
Andy

All we are saying is give thals a chance.

Re: Study Finds Thal Minors do Have Symptoms
« Reply #181 on: October 13, 2017, 11:50:50 AM »
In my very detailed evaluation with a Hematologist and Cardiologist together on 28th September, nothing much came out.

Reticulocyte count 7
Hb 9.9
HbF 6.3%
Hb A2 5.8%
MCV 60
Platelet count 319
WBC 11900
RBC 5.89

HEMATOLOGY REMARKS: THALASSEMIA INTERMEDIA

CARDIOLOGY REMARKS: 2D ECHO is Normal, repeat every 3 years.


Hematologist is of an opinion that all symptoms I explained in 45 minutes are of beta thal intermedia. Clinically and pathologically the case is Intermedia. Yet, the Hematologist recommended we should not start Hydroxyurea tablets for now.

The recommendation for next 1 year:
Daily Folic Acid 5mg lifelong
Monthly B12 shot as the case maybe
D3 supplement as the case maybe
Thyroxine as suggested by Endocrinologist

Repeat consultation after 1 year to reevaluate hematology parameters.

Chest pain (angina or myalgia type pain) in chest bones below throat till esophagus
At times hard breathing continues even now
Discomfort on left side due to spleen
Poor blood circulation in body, worst than last 4 months
Low energy levels after 5pm, these 10-12 days have been the worst
My Palms look more palish white than 4 months back

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Offline Andy Battaglia

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #182 on: October 14, 2017, 06:41:38 PM »
I think most of the symptoms listed at the bottom of your post are related to the low oxygen that comes with low Hb and to the high turnover of RBC's which enlarge the spleen.
Andy

All we are saying is give thals a chance.

Re: Study Finds Thal Minors do Have Symptoms
« Reply #183 on: October 16, 2017, 08:33:24 AM »
Lets see how the current homeopathy medicines work:
i) Arsenic Album 30c dilution 7 drops in water twice daily
ii) Crotalus Horr 30c dilution 7 drops in water twice daily
Above two are considered medicines for hemolytic anemia. Materia medica / repertory does not have thalassemia specific medicines.

iii) Reckeweg R7 combo 10-12 drops in water twice daily
for liver, gall bladder etc

iv) NL-4 gall b tone drops 10-12 drops in water twice daily

v) SBL Acidum Uric 30c 8-10 drops in water twice daily



My Next selection will be:

1) Arsenic Album 30c dilution
2) Nux Vomica 30c dilution
3) Ceanothus Americanus Q mother tincture
4) SBL Acidum uric 30c dilution

Will keep you posted.

Re: Study Finds Thal Minors do Have Symptoms
« Reply #184 on: April 14, 2021, 10:40:32 AM »
I have delta beta thalassemia trait with Hbf upto 20% at times. I have normal hemoglobin levels, but I get tired very easily. I was also tested for severe vitamin D deficiency which was a life saver in that it reduced my sleepiness and fatigue by quite a bit. But still I have to sleep long hours and take several naps in the day even when I am doing office work sitting in a chair, since my body aches quite a bit after undergoing mental concentration. I also am unable to keep up with my wife on vacations when long walks or physical activity such as paddle boating is involved. Also my hands shake suggesting poor motor control - I am afraid of holding a soup spoon for fear of embarassing myself. I can't even seem to speak long sentences without catching my breath or stuttering.

I think the Hbf is less efficient at delivering oxygen that is why even with normal hemoglobin levels I run out of breath easily. I will talk to my doc about any remedies she can suggest such as vitamin supplements. I might get consultation from specialist too. These days I have chest pain as well which seems to have worsened over the past few years.

Hoping to provide some useful suggestions here in the future.

Re: Study Finds Thal Minors do Have Symptoms
« Reply #185 on: April 21, 2021, 04:54:32 PM »
Thanks for this information.  Question:  I have thal minor.  All of my life, I've had shortness of breath with mild exertion.  In November, I caught COVID with only mild flu-like symptoms.  In the last month, I have joined a gym (before was mainly brisk walking 4 miles) and joined a small group with a trainer.  I am so out of breath do anything re cardio.  Has anyone else experienced this, especially after having COVID.  I am asking only because it is so noticeable now -- where in the past, I worked through the shortness of breath and moved on.....  Thanking you in advance for your thoughts.

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Offline Slade

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #186 on: April 25, 2021, 01:20:16 PM »
In my experience I've had lingering tiredness and shortness of breath after most systemic infections. For example when I go down with the stomach flu I usually get back on my feet on the very next day but after just a 5 minute walk I'm totally out of breath.. and this goes on for days after all other symptoms are gone. I get it much worse with the respiratory flu so I guess the corona can have such an impact as well. Exercise in moderation, allow your body to fully recover afterward and I'm sure you'll get much better with time.
Hb Lepore variant

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Offline Andy Battaglia

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #187 on: May 03, 2021, 09:11:57 PM »
SandsofTime,

HbF has a higher affinity for oxygen than HbA, which means it doesn't let go of the oxygen it carries as easily as HbA does, so that does often result in more fatigue in thal minors.

The vitamin D is great and FYI, I, a non-thal, take 50,000 IU once weekly. It sounds high but is not and has finally got me past winter depression. As I've gotten older, I found myself still having trouble making it through the day and wanting to leave work a couple hours early. After hearing thal minors tell me how much folate improved their energy levels, I added 5 mg L-methylfolate daily. I already take 5 mg B-12 daily. Now, I am making  it through the day without feeling so fatigued in the late afternoons. The thal minors were right. L-methylfolate can really help.
Andy

All we are saying is give thals a chance.

 

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