Any advice

  • 23 Replies
  • 19942 Views
Re: Any advice
« Reply #15 on: January 28, 2011, 09:20:33 AM »
Blood results
serum vitamin b12                  894ng/l  Range(187.0-883)   Above Range
Serum Folate Level                  8.5ng/ml (1.8 - 18.3)
Serum Ferritin Level               45.7 ug/l (10.00 -204.0)

Haemoglobin concentration      11.7g/dl (11.5 - 15.5)
Total white blood count            8.6 10*9/l  (4.5 - 14.5)
platelet count                          388  (140.400)
red blood cell count                 5.98 (4.0 - 5.2 ) above range
mean cell volume                        62.0 fl (74.1 - 91.4)  below range
haematocrit                            0.372 (0.35 - 0.45)
mean cell haemoglobin levels       19.6 pg   (25.00 - 33.00)  Below range
Mean cell haemoglobin concentration        31.6 g/dl  (30.9 - 34.8)
neutrophil count                            4.74  (1.5 - 8.0)
lymphocyte count                       3.20  (1.5 - 7.00)
mono cyte count                       0.40  (0.2 - 1.0)

Eosinophil count                       0.10   (0.1  - 0.5)
basophil count                          0.10  (0.0 - 0.2_
Hope it makes more sence to you than it does to me!!!

     

Re: Any advice
« Reply #16 on: January 28, 2011, 09:28:36 AM »
Hi everyone
As promised the blood results above (I had to beg the doctor for a copy, they dont like to part with them in the uk!!)

As I said before she is getting a little more energy although still not as she usually is (Normally very active)  She is now eating fine, but still complaining of breathlessness.  Doctor doesnt think asthma.  I do think there is some connection with breathlessness and thalb as half of the family on my ex husbands side are thalb b trait, most have similar breathing symptoms with no explanation and no known cause (I used to think he was putting it on until my daughter started with the same symptoms)  he also used to complain about feeling bloated and stomach ache so im wondering if its a stomach acid thing rather than breathing directly.  Would be interesting to know if any studies have been done on thal b and breathing.

let me know what you think to the results, they are actually the best results she has had nice in along time.

*

Offline shirshendu

  • *
  • 14
  • Gender: Male
Re: Any advice
« Reply #17 on: January 30, 2011, 06:40:44 PM »
Hi,

Sorry for late posts.. Good to see that your daughter is not anemic . Hb and haematocrit is very much normal (which is a very good news for a beta thal trait) and i would b happy if you can continue this during her growth. I m not an expert to comment on "what-about and why" of the B12 level being more than normal.

Above all, we shud find out answers of breathing probs and the tiredness. what doc says about these two problems ? what is the treatment of them?

anyways, take care of two of you.. and wish your girl will be back to herself soon.

ciao
If we be aware thalassemia can be eliminated from earth in just one generation

Re: Any advice
« Reply #18 on: January 30, 2011, 07:02:25 PM »
Hi

Doctor thinks that tiredness is something to do with post viral flu (She had flu at christmas) said it can take upto 6 weeks to go sometimes.  He said if she is still tired in a month, go back.  Thats it.   I was reading about the enlarged spleen and thal patients (Any idea if enlarged spleen applies to thal b aswell or just major?) as one of the symptoms listed for enlarged spleen is interestingly breathlessness!!) wondered if that could be the connection???  Does the spleen enlarge when someone is ill??  Am sure that there is some connection between her being ill then the breathlessness, if it isnt the iron (Which her blood results show), then what??  Is there anything in a blood test that would show for the spleen (Have no idea about the spleen)  she has been complaining of pain in her left side and back aswell although not all the time.

Hope you are ok

Any more luck with the air force on your side??

xx

*

Offline shirshendu

  • *
  • 14
  • Gender: Male
Re: Any advice
« Reply #19 on: January 30, 2011, 07:13:31 PM »
hi
did you tell the doc about the pain ? yes thal traits are prone to spleen enlargement .and the symptoms u talked about is indicative about enlarged spleen...  i dont think she is serious, based on the reports from you. Still u shud inform docs about her occasional pain. Don't be panic .. doctors would check her spleen by pressing and feeling and if not satisfied and doubted something they might tell u to do some examination to get the picture of the spleen. i think, to be on the safe side , u shud get it checked from doctor.

I am ok. Enjoying the winter of Calcutta :)

Air force has declared me unfit and so i cannot join. I can challenge their policy thru court. but i dont want to go to court only for my job -- though i m interested to fight in court against their policy for thousand other thalassemia minors. waiting for their formal letter of rejection to reach my home. and the process i have thought of is gonna take long time.
« Last Edit: January 30, 2011, 07:57:42 PM by shirshendu »
If we be aware thalassemia can be eliminated from earth in just one generation

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Any advice
« Reply #20 on: January 30, 2011, 08:02:13 PM »
If the tiredness is only a recent phenomenon, I am inclined to agree with the doctor that it is the result of a recent illness. Because her Hb is decent for a minor, unusual tiredness should not be a regular aspect of her life. Her test levels are all good for a minor and her folate is normal and her B-12 is at the high end of normal (slightly above normal is nothing of concern, and in fact another site lists the high end at 914). The only thing of note is the high RBC count. Do you also have the results of a reticulocyte count?

Discussion: Spleen size can be felt in a physical examination by the doctor. If it is bigger than normal, it should be easily determined. There are two reasons why breathlessness could be caused in this context (if it is not the result of a recent illness). One is that the spleen is enlarged and pressing on the lungs, thereby limiting capacity. Again, this can easily be tested using spirometry. Even if it isn't asthma, if there is a physical limitation on lung expansion caused by an enlarged organ pressing on the lungs, lung capacity will be lessened. The other condition that can affect lung capacity is extramedullary hematopoiesis , a condition where in times of low hemoglobin levels, the body will produce red blood cells outside the bone marrow, most commonly in the spleen and liver. This will result in enlargement of those organs. This is very uncommon in thal minors and would not be expected in one with an Hb as high as your daughter. However, because I do know of a case in which asthma-like conditions have been created in a thal minor, I do mention this possibility. If the breathlessness continues, I would ask for a lung capacity test to see if the lungs themselves are a problem. If this proves to be the case, spleen and liver size should be determined to see if an investigation along this line should be taken. The reason I also asked for the retic count is because the RBC's are high, which is normal in thal minor, so I would like to also see the retic count, as this gives some idea about how active the bone marrow is in producing new red cells. If this count is also high, there is some possibility that there is a high turnover of RBC's and the destruction of the old RBC's by the spleen can lead to an enlarged spleen. Again, this is not expected in one with an Hb of 11, but it should be explored if problems continue.

Thal minors usually live with anemia to some degree and the result is that they tend to tire more quickly, due to a general lack of oxygen (hypoxia) and will also find that they become breathless more easily than non-thals. On the other hand, you have thal minors like Pete Sampras and Zinedine Zidane who have had great athletic careers, in spite of being thal minors. Sampras has disclosed since his retirement that he did not let people know he was a thal minor, because he felt that if an opponent understood minor, the match would be drawn out in an attempt to tire Sampras, so Pete dispatched his opponents as quickly as possible so this was not usually a factor during matches. But outside of exceptions like these guys, what I hear from so many thal minors is the same thing. Tiredness, breathlessness, numbness in the extremities, and a need for an afternoon nap. I am sure you recognize these symptoms from other members of your ex's family. As a group, we are learning what we can about what minors can do to improve their lives, but there is no easy answer. Low Hb means low oxygen and the body will move oxygen to where it is most needed, but this means some areas of the body end up with less oxygen than required. My belief is that minors have to try and optimize their health through diet, nutrition and exercise and proper rest when needed if they want to see improvements in their health.
Andy

All we are saying is give thals a chance.

Re: Any advice
« Reply #21 on: January 30, 2011, 10:26:23 PM »
Thanks again to both of you for your explanations, still trying to get my head around all the info.  Im no longer stressing about her as all the bloods appear ok and she doesnt seem any worse.  Maybe its just shes having a growth spurt, who knows.

Andy I think you are so right about not letting people dwell on any drawbacks of thal b as its so common in greece and italy and they all carry on to become atheletes, military whatever they wish.  Maybe the key is the sunshine or vitamin D and the good mediteranean diet definately makes a big difference!! 

Im just starting to understand more and read more about thal, its just so confusing the info that is out there and with different info from doctors, makes it worse. 

Thanks again for all the info

Hopefully she will pick up soon.
Will keep you posted xx


*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Any advice
« Reply #22 on: January 30, 2011, 10:35:16 PM »
My own experience has made me a huge believer in vitamin D, especially when one is not living in their "native" lands, whether theirs or their ancestors. So many of us live in climates that aren't natural to our ethnic origins, that we cannot possibly get enough vitamin D year round.
Andy

All we are saying is give thals a chance.

Re: Any advice
« Reply #23 on: January 30, 2011, 10:45:49 PM »
Do you also have the results of a reticulocyte count?

Nothing on the tests.  Dont want to make her paranoid by running more tests so will just wait a few weeks and hopefully things will improve, if not will take her again and ask for this.

Started her on vit d a week or so ago, used to give her it together with omega fish oils, dont know why i stopped, just forgot.

I also give it to my mum who has alzheimer, think it does make a difference there to, at least she seems happier in the dull uk winters!!  The sunshine does make such a difference in lightening our mood, which in turn can only lift our bodies too (Mind and spirit) so it all makes alot of sence, put my self on it too now!! 

 

SMF spam blocked by CleanTalk