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Discussion Starter · #1 ·
Hi,

I have had 3 recent m/cs.  Cause is unknown, but could be age/blood-clotting issues.  However, I had a lot of odd symptoms during my last pg (e.g. high temps. at night, painful glands underarms and in groin, sneezing, aching joints etc.).

I have had my medical notes reviewed by Dr. Beer and he has indicated various tests.  Some (cytokines, NK Cells, ANAs etc) are to be done in Los Gatos and some are to be done in London.

Can anyone tell me where they have gone to get blood drawn for sending to Dr. Beer please? (plus possible cost?).
Did anyone also have the other tests, and if so where in London? These tests including e.g. serotonin, MTHFR, APTT, etc.

How long do results take from Dr. Beer?  I am starting my last cycle in 2-3 weeks and wonder if I'll get results in time?

Finally, I have already been diagnosed by a rheumatologist with Factor V Leiden and possibly Raynaud's.  If I am taking steroids and heparin for my next cycle, will this cover everything?  I'm not sure whether I would do IVIG.  What about Humira.  What is it prescribed for?

Sorry about the questions.  Very confused about whether to spend the huge amount of money with Dr. Beer.
Thanks
Daisy
 

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Hi Daisy,

Sorry to hear about the extra diagnoses.  I saw Dr Beer on one of his visits to the ARGC but as his patient not the ARGC's initially. He supplied a blood test form which I took around the corner to 111 Harley St and they drew the blood there.

I asked for the results to be faxed to me and they took about 10/14 days to come back. In total we spent about £1200 and this covered NK, TNF-a, MTHFR, Serotonin and a few others.  I'll post details more if I can find the form again.

The important ones for us were the NK and TNF-a tests.

Dr Beer tests to see if your NK cells are very active and then to see if IVIG controls this excess activity. You will receive either one or two IVIG infusions if it does control these cells.

He also tests to see how high a ratio of TNF-a there is to another immune substance and if the ratio is high he prescribes Humira. If TNF-a is very high he may ask you to lower this with Humira before starting a cycle.

He may also prescribe Humira if IVIG does not control the NK cells in the test tube tests he does with your blood sample.

When we discussed Humira with Dr Beer we could not original afford to consider the drug and he suggested the steroid Dexamethasone as an alternative.  He thinks that this works better than Predislone.

The Heparin is also something Dr Beer suggests (he uses Clexane) and baby asprin. If the MTHFR is positive you will need high dose Folic Acid. I get mine on prescription from my GP.  For low serotonin he uses a SSRI called Cipralex.

I'll try and find that form with the prices, Daisy and post more. Pls let me know if any of this is not clear.  Hope it helps.

With love from,
 

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Discussion Starter · #3 ·
Hi Flopsy,

Thank you so much for your very detailed reply - really helpful.

Part of me doesn't want to spend any more cash on this testing because I'm already taking clexane, steroid and aspirin.  I've had NK cells tested at Lister and they were negative.  However, I do worry that I may have other problems that only Dr. Beer can diagnose.  However, I just don't have the money for IVIG, so what could I do?

Anyway, thank again for your help.  Thinking of you as you get closer to EC, and wishing you the very best.
Daisy
xx
 

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Daisy

Hi, and firstly I'm sorry to hear about your m/c there very tough I've also had 3 myself.  As I was reading your post your symptoms sounded quite like an auto immune condition.  Then you went on to say about the Raynaulds.  Just out of interest have you also been tested for Lupus as whilst I in no doubt want to worry you but I have a feeling Raynaulds, Lupus etc are all related and painful joints/temperature at night time are a few symtoms of Lupus (I believe there are many more).

I've been diagnosed last your with Antiphospholipid syndrome and thick blood as my blood produces Lupus Anticoagulant.  Have you been tested for these?  But your right the standard treatment seems to be heparin and asprin for all these things.  I do understand how you feel about spending more money on tests etc and if you read up on things like NK killer cells there are many schools of thoughts ranging from it can't possibly cause a m/c to yes it can.  I know I was seen at the recurring m/c unit at St Marys which is meant to be the best in the country who firmly sit in the don't believe NK killer cells can cause a m/c.

I suppose I would say do what you think is best for you and what you feel comfortable with.  Good luck.

Nicky

 

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This may sound silly but here goes-a lot of pple spend a fortune on treatments to find out what the prob is with concieving or lack of-i have done some research and the most obviouse test that needs to be done is to do with the glands(this can be treated but is rarely checked for),it can be caused by the gland in the brain or the anal gland.I dont know what the condition is called but i do know that u can be reffered to an endocrinologist(covered by nhs),i think its a male factor prob but not 100% sure.Its not understood fully by us-the public but well worth looking into.Wish u and dh all the luck for the future.Love SKYE.
 
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