Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: David Clay on August 24, 2020, 03:27:26 PM

Title: Please could someone have a quick look!
Post by: David Clay on August 24, 2020, 03:27:26 PM
Hi all, I cannot believe its taken me so long to find a thal forum, felt like my endless research was going nowhere. My mother told me i was a beta trait before i checked myself.

My bloods are:

RedCell Count: 7.26
Hemoglobin: 13.0
Hematocrit: 0.41
MCV: 57
MCH: 18
RDW 17.2

B12: 529 pmol/L
Ferritin 176 ug/L
Vit D 37

Ive read a few posts and gather I should supplement with b12 and folate. However my b12 is elevated without any supplementation. I found this weird and found out it can indicate a functional deficiency, possibly low b1, b2 or other things (Dr Londsdale has work on this). Could it be due to the high RBC?

Should i still be supplementing b12 and folate? What is the mechanism by which folate helps?
I take 2000-3000 Vit D a day.
I experience severe hair shedding, fatigue and tiredness. I am going to test my folate and iron panel.

I thought i might be able to add some of my findings too. Apologies if they are useless. I have read studies showing cholesterol to be lower in thal patients (not new here). However (and controversially) this may not be a good thing, as cholesterol is converted to protective steroids and hormones (progesterone, testosterone etc) by a well functioning thyroid. Low thyroid and low cholesterol may lead to inflammatory processes. It seems eating plenty of fruit and calcium gives the liver enough resources to produce cholesterol.

Ive also found links with insulin resistance and thalassemia, due to liver cell inflammation & oxidative stress due to microcytic erythrocytes hemolysis, and am researching this now. Possible iron accumulation burdens the liver over time?

Pleasure to be here!
Title: Re: Please could someone have a quick look!
Post by: Slade on August 25, 2020, 10:59:41 PM
Hi David,

Your blood test results look a lot like mine except for ferritin. Your value is perfectly normal while mine is off the chart (700-800).
Have you ever tested your bilirubin levels (direct/indirect, etc.)?
Why do you say your B12 is elevated? Some doctors believe that even 900 is not too high and should be maintained somewhere around that level.
Folate is essential for red blood cells formation and is also important for the synthesis and repair of DNA. I believe it's good for a thal to take both B12 and folate. They say methylcobalamin and methylfolate are the better formulations.

Unfortunately the impact on endocrine function is not to be underestimated. I started noticing problems with my blood glucose levels in the recent years - fluctuating fasting BG and impaired glucose tolerance. It's worth mentioning that I'm not insulin resistant but my body can't produce enough insulin to cope with high glucose loads.
My thyroid is OK but I think I might have other issues (testosterone, etc.).

Kind regards,
Title: Re: Please could someone have a quick look!
Post by: Melissa A Tan on August 26, 2020, 01:00:19 AM

Just to chip in on the B12 issue. Although reference range for vitamin B12 is 200-1100pg/mL, it is reported that between 5-10% of patients with values 200-400pg/mL may experience neuropsychiatric and haematologic abnormalities due to occult B12 deficiency; less than 1% of patients with values above 400pg/mL will have symptoms.  B12 value should be between 700-900pg/mL.

I am in Singapore and thalassemia is common here. We also have an excellent healthcare system. The Health Promotion Board will hand out a form through the school so that the parents can fill in the family medical history including that of the grandparents. The doctors and nurses will come to school and do a blood draw and run the appropriate tests, including endocrine to assess if the child is at risk of developing other issues.
Title: Re: Please could someone have a quick look!
Post by: David Clay on August 26, 2020, 09:47:37 AM

thank your the replies, I will try out some folate soon!

I think my b12 pmol converts to 716 pg\mL. The first time i got this it was out of range but now i see its fine! Weird that I have such a good value with no supplementation.

I haven't got my bilirubin tested, should I? Ive seen Andy say its likely elevated.

Do you know why you don't make enough insulin? Is it to do with the high iron load?
Title: Re: Please could someone have a quick look!
Post by: Slade on August 26, 2020, 10:32:35 AM
Hi David,

You're right about the conversion - B12 numbers are quite different in pmols.

High bilirubin may be due to the accelerated hemolysis in thallasemics - it's a product of hemoglobin breakdown as well as iron for that matter. My blood bilirubin is elevated all the time (some 2-3 times above lab upper limit). I'm often wondering if I have the "intermedia" disease rather than the minor. My Hb though stays within the 12-13 range so doctors count me as a minor.

My liver tests are normal. It's worth mentioning I did a T2* MRI scan (Ferriscan) one year ago to check if there's abnormal iron deposition in my organs. My liver and pancreas showed little to no iron deposition. I don't know of any diabetic in my family either so I can't be sure why I'm having insulin/BG issues. From what I know iron is quite toxic for beta cells in the pancreas and free, reactive iron can easily destroy them so that's a possible scenario.
Title: Re: Please could someone have a quick look!
Post by: David Clay on August 26, 2020, 12:51:38 PM
Hi Mart,

Curious if you've tested for C-Reactive Protein?

Is it generally true for thals that raising hemoglobin lessens some symptoms?

Do you know if anyone has had success with folinic acid (also different to folic acid), as apparently it is primarily used for DNA repair:

Do thals have a problem converting folic acid to folate, similar to the MTFHR gene mutation

Title: Re: Please could someone have a quick look!
Post by: Slade on August 27, 2020, 10:31:15 AM
Hi David,

To the best of my knowledge c-reactive protein is high when you have some sort of systemic inflammatory condition like an infection.
I've been tested once or twice when my doc suspected an infection but it was always in the normal range. I've heard of a more sensitive test - the hsCRP which can supposedly detect a chronic, low level inflammation in your body but I've never tried it.

Unfortunately I have no information on this folinic acid and also I've never heard of this problem for thals not being able to convert folic acid to folate. Maybe someone else can help with more information.

Title: Re: Please could someone have a quick look!
Post by: Andy Battaglia on August 29, 2020, 07:16:01 PM

Your B-12 is not high for a thal minor's needs. It's actually preferable for minors to be at the high end of the B-12 range. If you ever deal with fatigue, add L-methylfolate (not folic acid). At my age, B-12 and folate have become essential in dealing with the late day fatigue my under active thyroid leaves me with. I would suggest a vitamin D supplement. Your D is above 30, but it's still not truly sufficient. My own experience showed that a d Level in the high 30's was insufficient, but I couldn't budge it higher until I switched to a once weekly dose of 50,000 IU. Sounds high, but many doctors are on board with this method, especially the top thalassemia doctors on earth, because the weekly doses work very well and very quickly.

You're among the minors I talk about when I mention the very high RBC. It keeps your Hb in normal range, but it also means a lot of defective red blood cells are produced in the process. Antioxidant foods and supplements are key to fighting the problems cause by this overactive red blood cell production. One other thing I should mention is that nitric oxide, NO is depleted in thalassemics, causing the blood vessels to become less elastic with age. Adding NO back is essential and should be started long before any effects are ever noticed. An online search for NO foods can be very informative. I do suggest that either L-carnitine or L-arginine be taken daily to help the body fix NO. This also helps the body build stronger RBCs.
Title: Re: Please could someone have a quick look!
Post by: Andy Battaglia on August 29, 2020, 07:18:32 PM
Folinic acid is a natural folate and works.
Title: Re: Please could someone have a quick look!
Post by: Andy Battaglia on August 29, 2020, 07:20:44 PM
Addressing the bilirubin issue in thals. The high turnover of RBCs causes a high production of bilirubin, so almost all thals will test high. This can cause a sludge build up in the gallbladder, that can eventually require the gallbladder to be removed. Milk thistle may have some benefit in helping to keep the gallbladder healthy.
Title: Re: Please could someone have a quick look!
Post by: Slade on August 31, 2020, 10:54:01 PM
Hi Andy,

That's a lot of valuable information, thanks for sharing!
Two years ago I had a pretty unpleasant episode of peripheral neuropathy and because of that I tested my vitamin levels. It turned out I was vit D and folate deficient, my B12 was in the 300s. My doc put me on vit D3 drops - 4000 IU twice weekly + folate + B1, B6, B12 complex. This helped get the vitamins in reference ranges and eased my symptoms after a few months. But isn't a vit D dose of 50,000 IU way too high? The leaflet of my vit D drops says one should monitor the calcium in blood and urine before and during therapy with very large doses because of risks associated with calcium deposits in the renal arteries. This is when both calcium and vit D levels are high.

What you said about the blood vessels of thals becoming less elastic with age really got me thinking. I've noticed when I take my blood pressure there's always a big difference between systolic and diastolic pressure - about 60, sometimes even more. For example 130/70. When I looked it up I found that one of the possible causes is when the blood vessels loose elasticity and become rigid. I mentioned this to my doc but (naturally) he ignored my concerns.

I took milk thistle for a few months some ten years ago but you know what, I had a routine blood test at that time and I got a record high bilirubin reading. It was something like four times above the upper limit while my Hb and CBC were no different than the usual. I wonder if the silymarin in milk thistle somehow disrupts the elimination of bilirubin. I know it can inhibit certain liver enzymes so maybe there is a relation.
Title: Re: Please could someone have a quick look!
Post by: Andy Battaglia on September 28, 2020, 08:39:05 PM

50,000 IU only sounds high due to the ridiculously low RDA, which has no basis in reality, but is actually based on what you need to take to avoid getting rickets. The once weekly dose works great and will get one closer to optimum level. I do not take calcium and feel that very few people should. It is the one mineral that is easy to get from diet. I've never had any issue with too much calcium. In fact, I tend to test at the lower end of normal (which is typical for a vegetarian). Many doctors around the world regularly recommend doses of 50,000-60,000 IU weekly of vitamin D for all sorts of issues. Since I started taking the weekly dose and a daily zinc dose of 50 mg (2 mg copper also in the zinc cap to avoid imbalance), I almost never get sick. One cold in the past 3 years.

As far as milk thistle, most studies show reduced bilirubin with it. I will mention that I have observed that thal minors with high Hb levels tend to report a higher RBC level and also higher bilirubin. My interpretation of this is that whatever they are doing (often with diet and supplements) that raises their Hb does so by increasing red blood cell production. Unfortunately, this means more defective RBC's as well, and their removal will raise bilirubin levels.

Most of the issues of loss of elasticity in blood vessels won't be known until it is probably too late to correct, so I encourage minors to be proactive with the use of nitric oxide inducing foods and supplements.