Questions about 6mp and Metabolite test TMPT

[LittlebitsMommy]

Well Gi called me back today. The labs from Monday are back. Said his regular weekly labs came back normal.

But the TMPT was abnormal again. This is the second time. The forst time we cut back to 25mg. Well now we are cutting back to 12.5mg

I am not sure what all this test for. When it came back last time I was told that his liver showed to be toxifing, but thats not the case this time but part of the test is still abnormal.

These are the numbers she gave me today. And this is what she told me. I am just wonder who all has had these same problems.

Test done in May

6TGN was normal normal is 200-400 his was 316
6MMPN abnormal normal is 5700 or below his was 18476


Test Done Monday

6TGN was abnormal normal 200-400 his was 995
6MMPN normal normals is below 5700 his is 1046


So I was told that the 6TGN test his liver and the 6MMPN test white blood count. So I was told that this means his white blood count is going way to low.

Weekly labs we had donel ast week showed his white blood count was lower than normal but Dr said everything was normal. Now they are saying this other test is showing his white blood counts fallen way to much.

Wow there is so much to learn and I feel like such a dummy cause I dont know it all. SO any info on this thanks in advance.

I hope everyone had a great day and felt well

 

[David]

Hi there Hopefully I can clear some things up for you

1. What you're describing here isn't TPMT. TPMT is either an enzyme or genetics test given prior to starting 6-MP or Azathioprine. What you're describing is the metabolites test.

2. 6-TGN and 6-MMP are metabolites. Basically they're what the 6-MP turns into in the body. 6-TGN is the good metabolite and levels between 235-450 pmol are shown to correlate with remission in patients. However, levels greater than 450 can be concerning and lead to bad side effects such as myelosuppression. 6-MMP is the bad metabolite. You want 6-MMP levels to be below 5700 pmol otherwise there could be liver problems.

3. I'd be curious what his WBC is. It has been shown that some degree of Leukopenia (low WBC) can actually lead to remission and may be a good thing. Obviously too low can be concerning.

I know this may sound like a weird question, but does your child happen to consume diary products around the time they take the 6-MP? Or are they on any form of mesalamine such as Pentasa, Apriso, etc?

Here is some additional reading for you if you're interested. The wiki articles have links to excellent references:

http://www.crohnsforum.com/wiki/6-thioguanine-6-TGN
http://www.crohnsforum.com/wiki/6-methylmercaptopurine-6-MMP
http://www.crohnsforum.com/showthread.php?t=37282
http://www.crohnsforum.com/showthread.php?t=36973

That your doctor is monitoring all this is great. Not all of them do so give them a pat on the back next time you see them

I hope that helps somewhat! And don't feel like a dummy! There is such a huge learning curve for this disease and it's super complicated at times. My brain explodes at least a few times a day as I read studies and articles. You're doing great!

 

[LittlebitsMommy]

No he doesnt drink dairy or eat dairy. He may have 1 piece of cheese every other week or so. Never been a dairy person.

I am sorry I got my intials wrong. They have alwasy told me that the TPMT enzymes and Metabolites test was the same. See I learn something new everyday.

His white blood count was 3 last week but not sure what it was Monday when they did it. Gonna go read some more
Thanks David

 

[LittlebitsMommy]

Oh yeah David he was on Pentasa but they took him off of it about 3 weeks ago to see if it would help with his high heart rate. He is taking 12.5 mg 6mp, 100mg Allopurinol, 40 mg neium, culturell, amitriptyline and peppermint oil.

He was taken off 1500mg pentasa a day, and taken off his bentyl

 

[David]

You have nothing to apologize for!

Here's the actual Prometheus Labs product detail .pdf if you're interested: http://www.prometheuslabs.com/resources/ptm/thiopurine_metabolites_product_detail.pdf

For clarity, they use an upper reference range of 400 for 6-TGN. My 450 comes from studies linked in the wiki article.

 

[David]

Have they considered the amitriptyline as the potential cause for his increased heart rate? I assume he's on a low dose but since he's a smaller child this study may still be pertinent.

 

[LittlebitsMommy]

That was what they originally thought may have been the cause. They took him off of it for about 3 weeks and there was no change. So I asked to put him back on it because it helped with his headaches and helped him to sleep. He has such a hard time sleeping. He is on 25mg at night

 

[LittlebitsMommy]

Gonna to have his magnesium checked Monday. I found some info that I thought was interesting on Magnesium. I posted it last night here. Everyone might have known it but I didnt

 

[David]

I wouldn't be surprised if I already asked you at some point so please take no offense if I did. But have his vitamin B12 levels been tested recently and if so, what were they specifically? Feel free to ignore me if I asked recently because I lose track and don't want to be annoying

*edit* Good idea with the magnesium

 

[LittlebitsMommy]

No his B12 has never been checked. Gi said we could have his Magnesium checked becasue they had never checked it. When I asked nurse about Vitamin D and other vitamins she said I would have to talk to the dr Monday. So B12 is another one I am going to ask about. Thanks

 

[David]

Wow, that's surprising that they've never checked his B12! Take that pat on the back for the doctor back. B12 deficiency could explain the increased heart rate and more. Ask but don't let them tell you no about having it and the vitamin D checked. I'd throw in folate as well if they haven't done that.

 

[LittlebitsMommy]

I asked about it one other time and was told there was no need to check it.

 

[David]

:facepalm:

I usually try to be diplomatic but considering Crohn's Disease can affect every step of a very complex process where B12 goes from food to successful absorption and subsequent recycling via enterohepatic circulation, that's just plain incorrect of them. B12 deficiency is rampant in Crohn's Disease patients and EVERYONE with CD should be checked.

Please don't let them tell you no.

 

[LittlebitsMommy]

Oh I wont let them tell me No again. I still have so much to learn. But I learn a thing or two everyday

 

[my little penguin]

also ask about lowering the allipurinol since that effects how much 6-mp is staying in the body.
Up until a week ago Ds was on 12.5 mg of 6-mp and 50 mg of allopurinol.
He had originally been on 50 mg 6-mp by itself. Same problem with liver and then metabolites too high.
Then we lowered to 12.5 mg 6-mp plus 50 mg allopurinol. Metabolites too low
Then up to 25 mg 6-mp and 50 mg allopurinol - metabolites +liver too high.
So methotrexate is what we are on now.