Abnormal Values in Blood and Urine Tests

[Aksel's Dad]

Today we received the results of the routine blood and urine tests for our son who is almost seven years old. The pediatric endocrinologist who demanded these tests is going to interpret the results anyway. However, as I have doubt whether the doctor will be able to figure out the meaning of the results in the specific context of HFI, I wanted to share with you those values that are abnormal. Any opinion will be much appreciated.



As usual, many thanks in advance for your time…



BLOOD TEST



PDW: 9.7 fL (normal value: 10-17,9)

% Eosinophil: 0.7 % (normal value: 2-4)

Creatinine: 0.28 mg/dL (normal value: 0,32-0,59)

Total Cholesterol: 217 mg/dl (normal value: <200)

Phosphorus, serum: 5.58 mg/dL (normal value: 3-5,4)



URINE TEST



Mucus: Positive (normal value: negative)

[antonia]

In my (non medical) experience, I don’t see anything here that seems directly related to HFI. And most of the values don’t seem too far out of normal range. Except for maybe the eosinophils. Am I reading it correctly that the eosinophil count is low? I’m used to seeing a high eosinophil count related to allergies or an immune response.

High cholesterol is pretty common for our kids that eat a lot of dairy and/or meat on the HFI diet.

I know phosphorus can be off with HFI, but I thought I read it would be low, not high. High phosphorus could be directly or indirectly related to the diet as well. Dairy and meat are high in phosphorus. And dairy is high in vitamin D, too. Not sure if you supplement vitamin D, but too much vitamin D can cause elevated levels of phosphorus. Also, dairy is high in vitamin D especially when it’s added as a supplement to milk and milk products. I used to work in technical services for a dairy company, and manufactures will often over supplement the milk, because if they fall under the claimed vitamin requirement they get in trouble with the FDA.

My daughter has been high in creatinine, not low. Unsure if her high levels are related to the amount of protein she eats, higher than most children.

Mucus in the urine would be an indicator that his bladder or something in the renal system is irritated. Cause could be something as simple as a UTI. But my daughter’s bladder and a kidney duct was enlarged (inflamed) before starting the HFI diet. The urologist said this could have been due to the metabolites, namely acids, in her system that were irritating the kidneys and bladder. But I don’t recall ever seeing mucus in her urine, and I don’t see any high acid values there or other metabolites that would indicate metabolism is off due to HFI.

I’m sorry, that’s all I see from my non medical point of view or background. I hope others might see something there, or you get some answers from the doctor. Has he been feeling okay? Or, any out of the ordinary symptoms?

[Aksel's Dad]

Dear Antonia,

Thank you so much for your prompt, informative and detailed reply, and apologies for my belated response...

Our new pediatric endocrinologist is in his seventies. He has gotten retired from a public hospital and is now working for a private one in Istanbul. Despite his considerable experience, he told us that our son was only the second HFI patient he has come across with. Nevertheless, he had come having done his homework: he humbly confessed that he had downloaded and read a few articles on HFI before our appointment. He told us that there was nothing to worry about the test results. In particular, he confirmed your opinion and said that, among other possible causes, high cholesterol could be due to the HFI diet. Then I asked him about the mucus in urine, and without giving any explanation he said that it was not important.

The connection you established between high phosphorus levels and consumption of too much dairy products seems convincing, although our son's consumption of dairy products is within acceptable range. A small glass of ayran (a yoghurt drink popular in Turkey) or kefir accompanies his rice, and he eats a small slice of cheese in breakfast.

Some websites claim that low levels of creatinine may be due to low muscular mass in the body (which may be the case in our son's situation). Regarding the low eosinophil count, on one website I found following passage:

"Low eosinophil counts may also be due to the time of day. Under normal conditions, eosinophil counts are lowest in the morning and highest in the evening. [...] Unless alcohol abuse or Cushing’s disease is suspected, low levels of eosinophils are not usually of concern unless other white cell counts are also abnormally low."

By the way, thank you also for asking if our son is feeling OK. Yes, he is. I hope all the children are...

[ukbill]

Do not worry at all about high cholesterol levels in HFI children. It is only in adults it can become a problem or in overweight children.. but our children are never (so far as I have ever seen) over weight, quite the opposite in fact we are usually quite lean and bone'ie lol

If your HFI child is happy feeling good and not suffering too many (or any) occasional Hypo / vomiting events then all is good.

[antonia]

I’m glad to hear you got some reassurance from the doctor, and that he is humble about his knowledge about HFI. So many factors can affect established “normal” ranges, and in the absence of symptoms this is probably just your son’s normal given his diet and where he is at, at this time in his growth and development. I read that phosphorus levels can go up and down in growing children, because levels are highly correlated to calcium activity involved in growth. Unless these values go further out of range, and do so consistently, I wouldn’t worry too much about it. Things like mucus in urine don’t mean much in the absence of symptoms or other out of range values. The body is always fighting invaders and irritants, and it’s probably just an indicator your son’s body is doing its job. I’m not sure if liver enzymes were measured, but this is one of the most important values we can run to monitor our kids’ health for HFI. If it wasn’t done, maybe you could talk to the doctor about adding it to the panel. And of course I am happy to hear he is feeling well ❤️ Far too often this is something doctors forget to ask, or pay attention to, but it sounds like you have a good doctor there who is willing to listen. I would hang onto that one.

[Aksel's Dad]

Mar 28, 2022 7:53:12 GMT -5 ukbill said:

Do not worry at all about high cholesterol levels in HFI children. It is only in adults it can become a problem or in overweight children.. but our children are never (so far as I have ever seen) over weight, quite the opposite in fact we are usually quite lean and bone'ie lol

If your HFI child is happy feeling good and not suffering too many (or any) occasional Hypo / vomiting events then all is good.

Dear Bill,

Thank you once again for your comforting and supportive approach. Yes, our son is happy, feeling good and since he started eating frequent meals and following a strict HFI diet, he has not  experienced any -yes, thanks God: 'any'- hypo and vomiting events. Before the HFI diagnosis, a puke bucket was always around at home.  His recovery is mainly thanks to the information provided on this forum; I am grateful to you all.

All the best from Turkey...

[Aksel's Dad]

Mar 28, 2022 12:40:22 GMT -5 antonia said:

I’m glad to hear you got some reassurance from the doctor, and that he is humble about his knowledge about HFI. So many factors can affect established “normal” ranges, and in the absence of symptoms this is probably just your son’s normal given his diet and where he is at, at this time in his growth and development. I read that phosphorus levels can go up and down in growing children, because levels are highly correlated to calcium activity involved in growth. Unless these values go further out of range, and do so consistently, I wouldn’t worry too much about it. Things like mucus in urine don’t mean much in the absence of symptoms or other out of range values. The body is always fighting invaders and irritants, and it’s probably just an indicator your son’s body is doing its job. I’m not sure if liver enzymes were measured, but this is one of the most important values we can run to monitor our kids’ health for HFI. If it wasn’t done, maybe you could talk to the doctor about adding it to the panel. And of course I am happy to hear he is feeling well ❤️ Far too often this is something doctors forget to ask, or pay attention to, but it sounds like you have a good doctor there who is willing to listen. I would hang onto that one.

Thank you, once again, Antonia. You are very attentive and kind. Your words about normal values are comforting. Yes, our new doctor is humble and he did have our son's liver enzymes (ALP, ALT, AST and Triglyceride, if I am correct) measured. However, when we asked him to check if our son needed to take Vitamin C, he said that children who had Vitamin C deficiency would have certain problems such as unhealthy gums or skin, and that since our child did not have any of these symptoms, checking the level of Vitamin C was not necessary. Upon our insistence he agreed to have the vitamin C level checked, and voila!: Vitamin C level was "<0.5" whereas the normal range was shown as "2-14". We are going to buy L-Ascorbic Acid powder.  

[ukbill]

Just a thought about Ramadan.

It is not good for us to go long without food or water. Both can cause the body to produce Fructose as a byproduct of the fasting / dehydration caused.

While I am not absolutely certain this will cause a Hypo event or if my feelings as a child (or even as a sum what older person now) when dehydrated are directly associated with HFI or something entirely different.

All I can say is heavy exercise with either little water or food makes me feel very "wobbly" and weak even now and really knocked me about as a child.

Something to perhaps consider?

Keep smiling and stay safe.

P.S the amount of vitamin C needed is tiny.. really tiny more or less if you can see it on the end of a spoon that is enough! A level teaspoon holds about 5g he will need maybe 1/10th of a gram! Yes that small an amount.