Confused over blood tests

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Offline MDL

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Confused over blood tests
« on: June 21, 2015, 06:59:49 AM »
Hi,
I'm new here and looking for a little insight to my recent blood test results before I go and speak to my Dr again.

I found out that I have thal minor during my third pregnancy and never though any more of it.

For years I have felt tired and had dizzy spells but over the past 6 months I have been so fatigued, nearly passed out a number of times and feel generally unwell. 8 months ago I ran a half marathon and now I am struggling to run 3-4 miles. My skin is very dry, I have psoriasis and my hair is falling out.

My father has autoimmune hypothyroidism and my mother was diagnosed with fibromyalgia however this is looking increasing like a long term undiagnosed b12 deficiency. She has a lot of nerve damage and spinal lesions, memory loss ect and is only 58. There is also suspicion that my mother's mother had pernicious anemia but we have no way of finding out.

Anyway, I has some bloods done recently and what I was wondering is can thalassemia mask a b12 deficiency i.e if I had a b12 deficiency the blood cells would be large but mine are smaller than average, would the thalassemia counteract larger blood cells? My B12 was in range but at the low end and my folate was at the very bottom of "in range".  My MCV and MCH and lymphocyte count were all low but my RBC was high. I can't make sense of this!

I think I may have read that people with thalassemia require more B12 and Vit D, would be correct? I am wondering if there is anything I can take to my Dr as I know how uneducated they are on both Thalassemia and pernicious anemia and with a family history of thalassemia and possibly PA I need to get this checked out especially for the sake of my children.
Thanks in advance


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Offline Danny.H

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Re: Confused over blood tests
« Reply #1 on: June 22, 2015, 06:19:48 AM »
Hello MDL,
You are right most doctors don't even bother to give you information or search any information about thalassemia minor . I'm  an alpha Thal minor with two deletions and I have been fighting the same  aggravation of symptoms you have for the last couple years . I do have lack of D and B12. I'm treating with a naturopathic  doctor for the last 9 months and I can see some improvement ,however lack of oxygenation causes some symptoms as pain on joints . Some days it turns to be very annoying. It's very important that a thal person choose an antioxidant diet and get the right supplements to help in a better functioning of their bodies. My grandmother ( mother side)died at age 38  with a series of problems that make me think she had thalassemia ,my mother is a silent carrier and my father was also a silent carrier (he passed away after fighting myelodisplastic syndrome for 10 years ) I do know it because I received a deletion of each parent ,and I know they were carriers because my brother doesn't have any deletion he has normal  hemoglobins .  Different from my parents I can only pass 1 deletion to my children and can only have children that are silent carriers or more deletion depending of my husband . I just got my children tested this last week and hopefully they are going to be silent carriers .
Daniela

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Offline CatherineM

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Re: Confused over blood tests
« Reply #2 on: June 23, 2015, 10:39:44 AM »
Have you had a B12 blood test done?  The results of test you are referring to won't give you the full picture.

Once you have the B12 results done, you will want to try and keep B12 levels at the top end of range.  Most doctor will not advise supplementation if the B12 is in range.

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Offline MDL

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Re: Confused over blood tests
« Reply #3 on: June 23, 2015, 04:44:03 PM »
Have you had a B12 blood test done?  The results of test you are referring to won't give you the full picture.

Once you have the B12 results done, you will want to try and keep B12 levels at the top end of range.  Most doctor will not advise supplementation if the B12 is in range.

Hi Catherine,
I had my b12 range tested which was 332ng\L and folate serum was 5.0 ug\L but they didnt test ferritin. I know that these levels are in range but they are not high at all. I saw the dr yesterdy and she was less than helpful jst said im iron deficient which i refuted. When i mentioned i had thalassema minor she said she knew nothing about ths abd has referred me but ddnt want to hear anything about pernicious anemia as se said i definitely dont have it. And she refused the tests for b12 as well.

Danny H. I'm sorry to hear about your ordeal. I hope your children's test some back ok

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Offline Danny.H

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Re: Confused over blood tests
« Reply #4 on: June 25, 2015, 05:25:53 AM »
Hello again MDL,
I wonder if is possible to find a doctor knowledgeable in thalassemia on your area .
It is a matter of balance our chemistry an usually MDS are not for it.
I tried to take the advice on this side I was doing for myself and told my MD what I was doing , my naturopathic doctor asked to stop all the supplements I was doing because at that point ( I was in a crises of joint pain ,gallbladder inflammation , adrenal fatigue and issues with my leaver ) whatever I was doing was just getting worst. So in my case I couldn't just take supplements without some guidance. It's is the reason I ask if you have a good naturopathic thalassemia doctor around your area. Even for my naturopathic doctor I see some frustration from his part when he wants to help me better but cannot do it. Some aspects os thalassemia are just exercise , in other  times rest .
Daniela

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Offline MDL

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Re: Confused over blood tests
« Reply #5 on: July 01, 2015, 05:23:37 AM »
Ok so I've now had my second lot of blood results back. These were done 2 weeks after the first ones. Now I'm not sure  if I should be taking iron or not. My folate level has gone up from 5.2 to 7ug/l but my b12 has dropped from 332ng/l to 232ng/l. My serum ferritin and serum iron were not tested last time but are now 26ug/l and 20.5 umol/l respectively. I can see that my iron is within range but am I right in thinking that although in range, my b12 and ferritin are on the low side and may be contributing to my symptoms? I am just worried about taking iron.  ???

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Offline Andy Battaglia

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Re: Confused over blood tests
« Reply #6 on: July 01, 2015, 11:47:47 PM »
MDL,

We get constant reports of low ferritin in thal minors. I don't think it has much relevance as a diagnostic tool for thal minors. The TIBC (total iron binding capacity) has more relevance, as it shows if your body is actively trying to absorb more iron. If the TIBC is high and serum iron is low, iron deficiency can be suspected. If taking iron for a short time improves your symptoms, you can assume iron deficiency. If it doesn't help, deficiency is unlikely.
Your B-12 is low. What we are seeing is that thals should strive for a B-12 level on the high end of normal. Sublingual B-12 is more readily absorbed. L-methylfolate is the better form of folate and minors can take 1-2 mg daily. A B complex may also be of value.
Andy

All we are saying is give thals a chance.

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Offline MDL

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Re: Confused over blood tests
« Reply #7 on: July 30, 2015, 09:03:39 AM »
Thanks for the reply Andy. How much B12 should I be taking?. The haemolotogist has refused to see me so I guess that I will have to figure this all out by myself.

 

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