Problems getting the methylation panel test in the UK - help!

[Sasha]

Soooo....

I've only just got my brains together in the last few days to tackle the three elements involved in getting a methylation panel test done - a UK hospital to draw the blood, a courier, and the lab in the Netherlands. Oh :headache:.

I've already made a lot of phone calls/emails, sometimes asking the same question in different ways hoping for a clear answer but getting nowhere! Can anyone help me with these questions:

1. The lab instructions say you have to put your blood in the fridge at 4-6 degrees within 2 minutes of the draw and send your blood samples with an ice pack and to ship overnight using 24 hour shipping. I asked the hospital about this and they said they can provide an ice pack but it won't be enough to keep the samples cold for 24 hours. If 2 minutes above 6 degrees is an issue, I'm worried my blood is going to be fried by the time it gets to the lab, ice-pack or not. What should I do? I canna change the laws o' physics, Cap'n!

2. FedEx will carry blood but their local drop-off offices won't accept parcels containing it so I will need to arrange a pick-up, presumably from my house. They've said they can only guarantee 6pm next-day delivery to Bunnik, where the lab is, though the lab says it will be by 2pm (I don't know how they know). I have had several stunningly incomprehensible conversations with FedEx about how to arrange a pick-up. I think they were trying to tell me that I can phone on the day and there'll be a pick-up within a few hours. Is that right? Should I be trying to get as late a slot as possible so that the blood has less time to deteriorate?

3. Will my continuing to take 75mg/day Pregabalin (Lyrica) affect the test results? I think I read on one of the bits of paper that you're supposed to ask your doctor about discontinuing meds.

 

[richvank]

***Hi, Sasha.

I've only just got my brains together in the last few days to tackle the three elements involved in getting a methylation panel test done - a UK hospital to draw the blood, a courier, and the lab in the Netherlands. Oh .

I've already made a lot of phone calls/emails, sometimes asking the same question in different ways hoping for a clear answer but getting nowhere! Can anyone help me with these questions:

1. The lab instructions say you have to put your blood in the fridge at 4-6 degrees within 2 minutes of the draw and send your blood samples with an ice pack and to ship overnight using 24 hour shipping. I asked the hospital about this and they said they can provide an ice pack but it won't be enough to keep the samples cold for 24 hours. If 2 minutes above 6 degrees is an issue, I'm worried my blood is going to be fried by the time it gets to the lab, ice-pack or not. What should I do? I canna change the laws o' physics, Cap'n!

***I think there is some conservatism built into the labs instructions. They use enzyme blockers in the sample vials to preserve the blood samples, and these will actually work longer than 24 hours. I know that people have sent samples to the Dutch lab from Australia, and the results came out O.K. I'm under the impression that FedEx has provision for sending samples with ice packs. I don't know if they incorporate more ice than the hospital pack would supply, or not.

2. FedEx will carry blood but their local drop-off offices won't accept parcels containing it so I will need to arrange a pick-up, presumably from my house. They've said they can only guarantee 6pm next-day delivery to Bunnik, where the lab is, though the lab says it will be by 2pm (I don't know how they know). I have had several stunningly incomprehensible conversations with FedEx about how to arrange a pick-up. I think they were trying to tell me that I can phone on the day and there'll be a pick-up within a few hours. Is that right? Should I be trying to get as late a slot as possible so that the blood has less time to deteriorate?

***I don't know how rapidly FedEx will respond there, or what times the flights are, etc., so hopefully FedEx will be able to help you with those things.

3. Will my continuing to take 75mg/day Pregabalin (Lyrica) affect the test results? I think I read on one of the bits of paper that you're supposed to ask your doctor about discontinuing meds.

***I don't think Pregabalin will affect the results. There is very little metabolism of Pregabalin. Nearly all of it is excreted in the urine.

***I hope this helps.

***Rich

 

[Sasha]

Thanks, Rich - that's reassuring about the enzyme blockers. I asked FedEx if they could provide ice packs and they said not (someone kindly PM'ed me who had sent blood to the Bunnik lab from the US and it seems that FedEx offer a rather better service there in all sorts of ways!).

I asked the question of how late I could send my package about eight times in the conversation I had with Fedex and was told (same conversation, same guy), 3:30pm, 6pm, 10am, 2pm, "not midnight", 3:30pm again, etc. etc. He may have been reading from some sort of comedy script, or maybe was on mind-altering drugs. He probably could change the laws of physics (or thought he could). I'll try again tomorrow. :headache:

Thanks for the reassurance about Pregabalin. My correspondence on that was like a surreal spy film in which two spies meet and have to exchange passwords and one says, "Is it OK to continue Pregabalin?" and the other says "The geese fly south in the winter". :headache:

Anyway, thank you! I think I know what to do now!

 

[Sushi]

Thanks, Rich - that's reassuring about the enzyme blockers. I asked FedEx if they could provide ice packs and they said not (someone kindly PM'ed me who had sent blood to the Bunnik lab from the US and it seems that FedEx offer a rather better service there in all sorts of ways!).

I'd try to get the blood draw as close to the FedEx pick up time as you can. I could send frozen gel packs from the US to a European lab with FedEx--I just had to list them precisely on the contents list. Something like "non-toxic frozen get pack for cooling." Also you have to say that your blood isn't carrying a communicable disease or something like that. The forms are on the internet if you have questions about them.

Best wishes,
Sushi

 

[aquariusgirl]

when i did it in the UK....i got a blood draw, packed it up at home.. got fedex to pick up it soon after the blood draw. maade sure it got on the plane that night....from memory.. 6:30 pm flight..... & that was good enof.

I think you need a fedex account to schedule a home pickup.

the yasko europe yahoo group has a guide to how to label blood products in the files section..

 

[Sasha]

Thanks, Sushi and aquariusgirl - yargh, this is all so complicated! I will check those extra things about labelling and having an account with FedEx in another comedy phone call. On Monday I can check with the hospital whether FedEx can pick up from them (which would be better!).

 

[xrunner]

I did mine only a few weeks ago. Fedex picked it up from the lab in London I went to. The samples got there all right the next day around midday.

 

[Sasha]

Thanks, xrunner - I hope the hospital might be willing to be the pick-up point.

 

[Uno]

I am going to approach Biolab in London about Methylation Testing and clinical trials in the summer as I am having great success with part of the protocol and believe it needs more research and development especially here in the UK, I know Dr Enlander uses it on his patients. I don't use the forums much these days but will keep you all posted on the new charity Neuroimmune Alliance and it's plans with methylation and research. Gabi

 

[Sasha]

Hi Uno - that would be great if you could get a lab interested in trials for the SMP.

I just googled on that charity and couldn't find anything. It sounds interesting. If you've got time, would you like to start a thread on it? Even just a link to its website, if it's got one, would be good. I'm all for research on methylation - so many people seem to be benefitting from it.

 

[Uno]

No, website doesn't launch till April, am frantically putting the pieces together as we speak. I will be plugging away from April so don't worry, you'll be sick of hearing about it all summer!

I did speak with a top doctor but he is maxxed out with his own studies, he worked with McLaren Howard back in the day so is familiar with the work. Maybe in a year he'll change his mind. It does seem that a lot of people are benefiting indeed.