Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Gemini on September 26, 2016, 12:29:21 PM
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Dear Andy,
I'm now at the end of my package of Sideral Forte - a strong dose of easily absorbable iron that I was prescribed by an Italian hematologist to deal with my low iron and ferritin levels.
I have also followed your advice and been taking Vitamin D (high dose), natural Vitamin E, folate, arginine, for the past two weeks. I'm drinking vegetable juice with wheatgrass every morning and follow a generally healthy diet.
Yet I am feeling, if anything, worse. Sometimes I start falling asleep when I am standing up - my eyes just close and I start drifting out of consciousness. I also can't get out of bed in the morning because I feel too weak.
I am waiting to see my GP in England to get some more blood tests, and then I am going back to Italy for a stomach examination (for the spleen, I believe).
Am I doing anything wrong? What can I do to help myself?
Btw, I have beta-thalassemia trait and my Hb when last tested was 11.3 (higher than average for me)
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Dear Gemini,
just a though but maybe you should include a good vitB complex along with theese...?
I am a major but I have a sister who is minor and she was always pale and tired and whatnot but since two years now I managed for her a similar vitamin program with a strong B-complex and she is very satisfied with it!
She actually calls me before runnig out of stuff and tell me "Im running out of vit pills, get me a new one!"
she also told me that she realize it imediatly when she forget to take her suplements because the Old Symptoms show up again...
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Thank you Nomad, it's funny you should say that, I took at Vit B pill this evening and I had that feeling, as though my body was crying out for it! I'll order some more now.
Any further suggestions on what could be causing my drowsiness while standing and sitting would be welcome. It's worse after meals.
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Well, as for after meals, I have this symptom when I'm on lower Hb right before transfusion. The explanation I have for myself is that the stomach needs more blood for the digest and that's why we feel the lack of it.
But people usually feel like going to sleep after meals I wouldn't mind, just an espresso and it is a little better...
:wink
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That's true, but I have to skip the espresso because it inhibits iron absorption! If you like a hot drink after your meal I recommend barley coffee or chicory instead...
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I am always concerned when iron is taken, as it may not be the proper remedy. The B complex can be very helpful. I would suggest continuing your regimen, but no iron for a month and see how you are feeling.
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Thanks, Andy. I am starting to feel slightly better. I have been feeling awful for so long that I don't want to get excited too early. But I feel some signs of life returning...
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Hello Andy,
On my GP's suggestion I came off the supplements for one week before going for tests. The surgery will not give me all the results until I have seen the GP again, but here are the ones they would give me:
Vitamin D 57 (apparently well below the normal range - this is after taking high-strength Vit D supplements for 10 days earlier in the month!)
Haemoglobin 10.3 (has gone down despite taking Sideral Forte)
Serum Ferritin 2.51
Iron 21
I am not sure how the last two relate to my previous results, which were Serum Ferritin 17 and Iron 61. I'm totally confused - although the receptionist who gave me these readings over the phone may have got them mixed up.
I am going to the surgery now to ask for a printout, although they said they won't give me one until I've seen the GP - which I can't as I'm going back to Italy to see the haematologist tomorrow! :-\
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OK - I have managed to get a printout of my results - no small feat in the nanny-state NHS! (British readers will know what I'm talking about...)
Serum ferritin 38
B12 237
Vitamin D 57
Haemoglobin 10.3
Iron level 21
Serum transferrin 2.51
Red blood cell distribution width 15.9 (this is above normal, I wonder why?)
MCH has gone up slightly from 21.5 to 21.8
MCHC ditto, from 31.3 to 32.5
This is after taking Sideral Forte - intense iron therapy. I am going to Italy for a stomach examination.
I am inclined to agree with Andy that the best therapy will be Vit D, B12 and Folate, but would appreciate any comments on the above results.
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Small changes in test results have no real relevance. Every test will show slightly different values for things like MCV and MCH. They will always be low in thal minors, as the bone marrow will always make small defective red cells, which causes the average volume to be lower, as seen in the MCV. If one is also iron deficient, they would see a slight increase in these values, but would still remain lower than normal once the iron deficiency is addressed.
I'm not convinced on the iron deficiency. I see far too many reports from thal minors, all showing iron values low, yet most don't respond to iron. Iron water, like Spatone, should be tried if other iron supplements haven't worked. It's a naturally occurring form of iron and is easily absorbed. It is much less harsh than other forms of iron. If that doesn't raise the Hb, it's very doubtful that iron deficiency is present. The RDW being high but not as high as would be expected in iron deficiency, IDA, where it's more likely if the RDW is above 18, also is more in line with thal minor than IDA.
Your B12 is at the low end of normal and doctors will say don't supplement. Thal minors do much better with a level near the high end of normal, >800.
The D is measured in different units, if it's low. Do you have the units of measurement that were used?
Hb >10 might be affected by folate and wheatgrass. Many minors do have Hb's in that range.
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Hi Andy,
The unit used to measure my Vit D level is nmol/L. I came out at 57 nmol/L and the normal range is 80-150.
Fortunately I may be able to address this with my NHS doctor. I've gone back to taking the 5000IU caplets.
I've just had my stomach scan in Italy and fortunately they didn't find anything, but the issue of my low haemoglobin and ongoing chronic fatigue remains to be addressed. I am going to ask for Luspatercept and see if I have any luck.
I will continue with the folate, wheatgrass, Vit E, etc, but I feel I am stuck with the managing a life-limiting syndrome rather than making progress. Perhaps this is as good as it gets once you're over 40?
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I think you have to look at it as a lifelong lifestyle choice, that focuses on getting really good nutrition, lots of fresh foods, and finding an exercise program that suits you as you get older. Most thal minors do experience more symptoms as they get older, but many find that they can do better with a conscious focus on optimizing their health. I regularly hear from thal minors who find various things are making a big difference. I recently heard from someone talking 10 mg of folate (not folic acid) daily and found it made a huge difference. One of the most carefree thal minor pregnancies that was reported to me was from a woman who also took 10 mg folate daily. Some things are worth trying. I am not a thal carrier but have an ongoing problem with my vitamin D level, having a Sicilian heritage and living in the north. I seldom can get enough D from the sun, and I didn't get above 30 (75 nmol/L) until I took 5000-10,000 a day for a year. I still take that same range and it has helped me a lot with tiredness, lethargy and winter depression. I've always taken the view that each person can find things that will help them. It may take some time and experimenting, but it can be done.
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Although I already led a very healthy lifestyle I've learned a lot from this site about the importance of Vitamin D and B12, folate and amino acids to thal minors. I was probably deficient to some extent in all of those (after years of taking just about every other supplement out there) and am much more focused in what I take now.
I've seen both the Italian hematologist and my British GP in the past two days. Although things seem to have reached their usual impasse the British GP was interested in Luspatercept and said she'd try to find out about the trials in London and whether I could be involved - pretty exciting. The British doctor was interested in why my hemoglobin level had gone down, whereas the Italian one said that it was because I had done the blood tests after my period - wasn't completely convinced by that.
I'm also finally getting my hormone levels tested - it's taken years to persuade a GP that I needed this, and I think to some extent playing the two healthcare systems off each other has helped get to this point. Sad that as patients we have to resort to this kind of thing, but after years of being fobbed off I think we have to take matters into our own hands where we can.
So will keep on supplementing and hoping that things will shift for the better...
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Just an update - I've been supplementing regularly with Bvits, folate, vit D and arginine for a few months.
Not a miraculous change but my body is at least allowing me to keep training. I play tennis 2-3 times a week, kickbox 1-2 times a week and swim twice a week. I have been embarrassingly out of breath with all these activities but today my swimming coach said my fitness had visibly improved (I still feel exhausted after the lesson and have to rest for hours!)
Just to say to those of you who are trying to become fit (which I believe will increase the oxygen flow to the RBCs), it is a slow and arduous process but do not give up! You deserve to have the best life you can have with thal trait.
I particularly recommend taking arginine just before you train.
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I am one beta thal minor - intermedia who has come to a conclusion that "regular supplements" are the best solution.
I took regular Folic Acid 5mg/day (not B12) from 1994 to early 2000's. Later for a decade or more I forgot or started skipping it.
I took B12 and Vitamin D between 2008 and 2013 and then I skipped it.
Then,
I had my worst health phase from Jan-2017 till date with poor Hemoglobin, poor liver function, high uric acid and poor thyroid.
What improved or is improving my health? Answer is: Supplements and Diet both.
Daily or regular intake of following since last 10-11 weeks:
a) Papaya
b) Pomegranate
c) Sapota
d) Watermelon
e) Musk melon / rock melon
f) Syzygium cumini, known as jambul, jambolan, jamblang
g) Mangoes
a) and b) were recommended by Ayurveda expert to give a boost to my blood.
And on supplements:
Folic Acid 5mg + 5 mg per day
Methylcobalamin shot per week, then per fortnight, then per month
Vitamin D 60,000 IU per week, then per 10 days
Ayurveda supplements (mainly for Hb and Liver)
Homeopathy supplements (mainly for uric acid)
Liv 52 tonic for liver
Things are getting better to say, but I believe its still not upto the mark as yet. It may take few months.
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Yet I am feeling, if anything, worse. Sometimes I start falling asleep when I am standing up - my eyes just close and I start drifting out of consciousness. I also can't get out of bed in the morning because I feel too weak.
Folic acid, B12 and especially their methylated forms (methylfolate, methylcobalamin) may disturb (ie. increase) methylation processes. This may lead to increase in neurotransmitters, including those responsible for sleep, and thus sleepiness. In a similar matter (ie. because of disturbed methylation) this may cause weakness and inflammation. I confirmed this in my case using TMG - another methyl donor, which is not a vitamin but also increases methylation. After taking it I get very sleepy in the same way as with methylfolate. OK, so what can we do about it? Very slow tirtration of doses. Immediate relief - take 50 mg of niacin - it absorbs methyl groups and immediately stops these symptoms... but... prolonged use of niacin for this purpose caused me different side effects. So there is always something.
I am very sensitive to folate supplements and I don't know why... you may be too.
I also strongly recommend taking zinc and copper which are as necessary as iron. I should rather say: one should start with zinc and/or copper before iron to see if these help.
Two of many links:
http://www.chiro.org/nutrition/FULL/Zinc_Not_Iron.shtml
http://drlwilson.com/ARTICLES/ANEMIA.htm
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I noticed an improved immune system since starting zinc and copper a few years ago. They should be taken together to prevent an imbalance that can happen if only one of them is taken.
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Over and over I've been told that melon juice is good for an enlarged spleen, which would have to mean it slows hemolysis, which would mean less bilirubin and uric acid production. I've heard good things about Liv 52, as well. Natural takes time, but is the best long run approach.
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Currently my ayurveda consultant has given me below ayurvedic syrup for better spleen function management:
https://www.allayurveda.com/shop/baidyanath-rohitakarishta-450-ml
My Morning breakfast ended with a bowl of watermelon and today's lunch ended with a bowl of muskmelon.
Its been 10 days with Liv-52-DS and I will continue this for 90 to 180 days(10ml twice).
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Thanks for that post, there are several suggestions that that I have not come across and will investigate further. I am interested in ayurveda but not all the suggestions I was given when travelling in India seemed to be directly relevant to my condition. However, it looks as though you have sorted the wheat from the chaff in that respect. Glad things are working out for you with supplements.
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Things are not so well after 18 September or so. Last 3 to 4 weeks have been hell.
All types of myalgia, angina pain, shortness of breath, low BP of 110/65 and what not.
An attempt to take Vitamin D3 injection of 600000 IU turned messy on 26 September when the liver could not sustain that oil based vitamin material. I had sharp screaming pain in my back just behind my heart. Doctors said it was nothing related to heart but gastritis caused my D3 injection. 600000 IU proved to be a high dose for a weak liver.
Overall weakness persists. If I go for B Complex, the niacin in that causes rise in uric acid causing joint pain.
A very bad viral fever from 28 September to 3 October almost grounded me to bed. The medicine for curing that put further strain on my red cell picture.
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Have you ever reacted to an oral vitamin D product?
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No Andy, I have never reacted to oral Vitamin D3 gel caps, tablets or the 1gm granules that I take.
First D3 injection given to me was Aug 2013 or so when my Vit D3 level was 5 or 6. It pained that time but no reaction.
Second D3 injection given to me was Sep 2017 when my Vit D3 level was 13. It did not pain that time but 48 hrs later I was in cardiac ICU due to severe pain just behind my heart in the back, darkness in front of eyes, palpitations and discomfort abdomen. Doctors then advised that poor liver was not able to accept the heavy D3 dose of 60,000 IU and hence causing severe gastritis leading to pain et al.
Doctors advised to go for oral 1gm granules weekly one sachet and put the D3 injection far away. Next inj should be taken maybe after 30-40 days and ensure Pantoprazole Domperidone is consumed for 7 days before and after the D3 injection.
But one episode of 28 September with severe pain behind heart puts me off for the D3 injections.
Maybe 60000 IU injection is too big a dose?
Maybe a small 5000 IU injection will not cause such pain behind heart?
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Maybe you should stick to the oral D supplements. They do work and you can find doses that are 50-60,000 IU.
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35 yrs ago I could not walk across the room without passing out. my stomach was so swollen that I looked pregnant yet I was just skin and bones
my eyes teared a lot even though I was not crying
one time I passed out in front of a clinic and the nurse there insisted I see a doctor who was familiar with TMM she had worked with doctors without borders her entire life and now volunteered one day a week
she said in past she prescribed 1cc of B12 injection once a month and gradually one a week. Most of my symptoms disappeared within 4 months 40yrs later I am still using the injection.
has anyone else tried this
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I am regularly hearing from patients whose Hb has risen and overall health has improved greatly by taking B12.
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I am regularly hearing from patients whose Hb has risen and overall health has improved greatly by taking B12.
Hello Andy mate, I was wondering what levels of vitamin B12 are considered adequate for someone with thalasemmia intermedia (hg7.2). My vitamin B12 levels currently run around 338-450 pg/mL and the blood test ranges on results seem to indicate 771 to be the maximum.
Cheers
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Yes same question from me. What level would be ideal?
My B12 levels at intermedia stage after 8 months of weekly => then monthly shot stands 449 in September.
From Nov 2017 I started taking 1000mcg methylcobalamin 2ml shot instead of the 1ml 500mcg shot.
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Studies have shown that thals do better when their B12 level is near the high end of normal. Even higher than normal is suitable.