Really concerned about ds's blood test results

[claw2]

Following on my previous thread about ds having a blood test, as he is extremely pale, tiring easily, being ill all the time etc.

When I phoned up for his results on Monday, I was told by receptionist that the hospital had written I needed to make an appointment with my GP regarding the results. Receptionist told me she couldn't really read the results, but thought that ds was anaemic and this is probably why I needed to discuss with GP (I thought this too as this is why he was tested)

Anyhow I went to see GP today. She told me blood test results were 'fine'. So I asked why I was asked to make an appointment to discuss results, if they were fine. She got results up on her screen and the following were highlighted in red

Serum gamma-glutamyl transferase level - low
Serum alanine aminotransferase level - low
Mean corpusc haemoglobin (MCH) - low

She told me the top two levels were 'liver function' but 'fine' and 'I shouldn't worry'. Bottom level means that ds is not anaemic.

So why would the hospital request at the bottom of these results that I need to make an appointment with GP about results, if everything is 'fine'? Surely the whole point of making an appointment was that everything was not fine and something should be done?

Thanks Polt, I am concerned that there is something more going on with ds.

I would assume that anything marked in red for the GP's attention, means it is significant somehow, which is why I was asked to make an appointment!

I am sure its not a matter of life and death, otherwise the hospital would have contacted me directly. But maybe that it needs to be investigated further or monitored or something, rather than being told everything is 'fine' and off you go.

Oh I don't know, I am probably putting 2 and 2 together and getting 5.

Will start a thread on childrens health board if I can find it! thanks.

Thanks Polt i have started a thread. On one hand I think if GP tells me its 'fine' and 'I shouldn't worry' then I shouldn't. On the other hand I have an instinct that something isn't quite right with ds and I think I would like a second opinion on the results.

Exactly Polter, I have been told ds is 'fine' so many times and the opposite turns out to be true. Then I think oh im just being paranoid!

I work in a hospital lab (and have done for about 15 years in a number of labs). I don't work in Clinical Chemistry, which is where these results would have come from, but from the results that our lab sends out I know these things:

1. The receptionist is not in any way medically qualified and is not in any way allowed to discuss or interpret your results. I had to train for 6 years and become state registered to do the job I do and even I'm not allowed to do that!

2. The reason that they've asked you to go in to discuss this with your GP is that she/he is medically qualified and able to interpret your DS's results according to what she/he knows about his medical condition - it's not as simple as just going by numbers.

3. A lot of our lab's results, even if they seem a bit out of whack, are perfectly normal unless two or three of the other results are also abnormal, which would give a fuller picture of the condition as a whole.

However, if you're still worried about your DS, please do keep on at them. Sometimes overstretched GPs might miss something, or lab tests might not be the right ones, so keep digging until you get a satisfactory answer, you have the right.

HTH

Thanks for your reply, much appreciated.

1. She did tell me she really couldn't read results (meaning she is incapable of reading them), I asked why i would need to make an appointment and we both assumed it would be due to anaemia as this is what he was tested for. So more us assuming, than her reading results.

1. This is what really concerns me, this GP is a temp GP. She knows nothing about ds and didn't ask for any of his history. Although my usual GP doesn't either. Her reading of the results were based on exact that, the results on a screen. My usual GP has misread his blood test before, telling me he wasn't anaemic. When Dietician read the same result, ds was severely anaemic. I don't have much faith.

I went in sat down, she asked me why I was there. I told her I had been told by the receptionist to make an appointment regarding ds's blood results. She asked when the blood test was taken, I told her. She got results up on screen, told me they were fine. I asked why did the hospital request i make an appointment to discuss results if they were fine. She searched about on her screen to find the footnote, then told me again results were fine. I asked her to explain what the results written in red were, she told me 'liver function' for top two. I asked was ds anaemic due to MCH level and she replied no. Told me 'not to worry' and pushed me out the door!

Not a medical professional, but low MCH would be indicative of Microcytic anemia, common cause being an iron deficiency. The latter can stem from various sources and given the description of your DS, if you have a reason to insist on a follow up with your GP. Ask to see another one, if you are being fobbed off.

I am sure you already know the iron-rich foods you may want to introduce in the meantime (if the iron deficiency is off dietary nature), but given you have posted on this board, you may face the usual issues of having a limited diet DS, just like the lot of us...

PS: Low GGT and ALT levels are most probably not a concern.

Thanks Kakty3, I started a thread in medical and have been given similar advice. That low GGT etc is probably just a sign of non-liver illness and they also stated microcytic anemia too!

That is my feeling, that the low levels of everything are probably connected to his poor diet somehow, however this is what everyone has just assumed, its never been tested. I did ask for a referral to a dietician, but was told one wasn't needed as ds isn't anaemic!

I do worry that it doesn't look good if I am the only one concerned about things, which no one else seems concerned about.

Claw, just an idea. I started my ds having complan or build up as a bedtime drink. Also used slimfast but made the shake with full cream milk. Then I didn't worry so much about what vits he was or wasn't getting in his food. Obviously we used in addition to meals, not as a substitute :-)

The GGT and ALT are only significant if they are raised, Claw. Even then, the significance depends on medical history.

The low MCH might show anaemia, but it depends how low it is. Even if it does indicate anaemia, then doctors don't get too worried about it unless a child is very poorly indeed. Vitamin B12 can help, but they'd probably expect you to get that over the counter.

Thanks guys its helped to put my mind at rest.

Ds certainly isn't showing serious signs of illness. He is just complaining of feeling poorly every day, lots of aches and pains and tiring very easily. If I didn't wake him up in the morning, he would literally sleep all day.

He eats at home ok, although his diet is very limited, he eats little and often. He doesn't eat at all in school (from 7.30am to 5pm) and maybe the feeling poorly etc is just down to not eating all day

Yes low MCH can indicate anemia. What sometimes it indicates small red blood cells - which obviously carry less iron. However if his ferritin was normal then he may not be iron deficient iyswim?

I was plagued by anaemia as a child - small red blood cells, low ferritin and low something else heamaglobin related. I actually got a lower reading after having iron meds!

I believe - although please check - that sometimes folic acid can help. Certainly vitamin C can help with iron absorption (that was my problem).

Im trying to remember back a few years, when my GP misread ds blood results. I am sure that ds's ferritin levels were ok then and it was his haemoglobin levels which were low.

GP told me not anaemic. We then saw a dietician a few weeks later, who read the same results (instead of taking another blood test) and told me ds was severely anaemic due to haemoglobin levels.

I think you should make an apt with a different GP to discuss these and the last BT results. You have the right to a second opinion and where even the professionals don't agree (sound familiar ) they should understand your need for clarification

All I know is that all 3 of mine were low. That did indicate anaemia. But there is more than 1 type of anaemia which can be treated differently. With ferritin, with folic acid, with bit C and vit B12.

I have also read "The regulation of iron absorption and transport is complex; there seems to be an important role for hepcidin, a hormone secreted by the liver" apparently the liver is the "master regulator of iron metabolism"

Two low liver function tests and low haemoglobin levels. Maybe I am putting 2 and 2 together and getting 5 again!

Actually I think your on to something. Strangely enough after years of being anaemic after viral hepatitis it just disappeared! It kinda just went when my liver healed itself after the inflammation! I'm now beginning to think this wasn't just coincidence!

Could you copy the page and take it with you? I think you've already got enough proof. Or the GPS that your instincts have been proved correct before!

To be honest my GP isn't much good, regardless of who I see. They have no understanding of ASD or ds's history with regards to anything outside of their remit. They are fine if you have a ear, throat of chest etc complaint. Look down the throat, yep looks inflamed, have some medicine. Listen to chest, yep I can hear a rattle, have some medicine. Very black and white. Don't read any history. Just type symptoms in, then screen tells them what to prescribe.

What do you mean your kid don't eat! Why! oh computer doesn't know what you are talking about!

Spoke to my usual GP, she blamed me for not making an appointment with the GP who referred for blood test!

Anyhow, she said I should have been told that test showed abnormal liver function and ds needs to have the blood test repeated in 6 weeks. She said that sometimes people can have one abnormal test, then if next one is normal, they wont investigate further. If next test is still showing abnormal liver function, then it needs to be investigated.

Oh dear that's good news but not good news. I'm glad you've spoken to someone who was able to shed some light on the results but sorry it showed abnormal liver function.

I hope the next tests are better.

I think anything outside of 'normal' is classed as abnormal and low test results are not as bad as high. From what I have read and others have said, low test results are usually an indicator of illness elsewhere in the body. Which would make perfect sense. Next blood test is only about 3 weeks away now (6 weeks from date of previous test), so wont have to wait too much longer.