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  • "LizaLou74" started this thread

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Reg: May 4th 2010

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Tuesday, May 4th 2010, 5:59am

New to the site, help with test results

Hi everyone, I am new to this site in general. I am in the US and just finished immune testing through the Alan E Beer Center. My history is as follows: I have had suspected autoimmune disease for many years (with a history of vitiligo-autoimmune skin disease), I do have one child that was conceived with the help of fertility treatment but a very complicated pregnancy. I developed preeclampsia at 24 weeks, was on bedrest for 11 weeks, baby delivered 5 weeks early very growth restricted and placenta was practically nonfunctional at that point. Still no further testing....was pretty much told it was a fluke that wouldn't happen again. I did 4 months of fertility treatment again last year with no success. I felt very ill during treatment and my doctor ran an ANA which was 1:2560 (highest he ever had seen). This prompted more basic testing which only revealed anticardiolipin antibodies. I learned of the book "is your body baby friendly" and read it and decided to move forward with immune testing. I had been put on prednisone for about 2 months because I began to have more autoimmune symptoms (finger joint swelling) and stopped it only for about 2 weeks prior to blooddraw. I realize this could have affected results especially NK assay.

My results are as follows:

Heterozygous MTHFR A1289C mutation

Heterozygous PAI 4g/5g mutation

Heterozygous Factor XIII

borderline for 2 antiphospholipids (IgG phosphoethanolamine, IgG Phosphoinositol)

Positive for 2 antiphospholipids (IgG Phosphatidic acid, IgG Phosphoglycerol)

Moderate Positive for Anti-ssdna

NK assay in normal limits, TNF and IFN in normal limits

LAD T cells Low 10.6 (normal 50-100), LAD B cells adequate 51.6

T reg cells LOW 0.1 % (normal is greater than 0.7)

antithyroglobulin antibodies slightly elevated at 24 (normal <20)

TSH 2.07 (2 years ago was 3.18) .......read they like it under 1.5

Serotonin 82 (read they like it above 100)

Any insight into my results and what treatment might be???
Thanks in advance,

Elizabeth

    United Kingdom

Posts: 15,284

Reg: Sep 24th 2006

Location: Up to my armpits in ironing

Children: Three gorgeous daughters!

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Tuesday, May 4th 2010, 3:44pm

Welcome!

I hope you like it on here, we have very friendly and supportive members that are sure to make your TTC journey that little bit easier, I hope you feel right at home with us all soon.

I'm sorry I can't help with your results but I can help you around the forum, if you let me know what treatments you have had/are having I can direct you to those parts of the forum also. Here are some links that you may find useful for now.

There is an abbreviations section HERE so you know what we're all going on about.

There is a secondary infertility/trying again section HERE where you can talk to others in a similar position to yourself.

There is a trying again chatter thread HERE where you can get to know some of the others trying again.

There is a ** GETTING STARTED - FZ FACTS, TIPS & HELP ** thread HERE this contains everything you need to know about getting started on FZ and a few guidelines too.

There is a ** NEW TO THE SITE? A BIT LOST? POST FOR HELP HERE!!! ** thread HERE where you can post any questions you have about how to use the site, a team member will answer you as soon as possible!

There is a how to search thread HERE so you can get the maximum benefit from the forum.

And finally!! Have you seen that lots of our members have fancy names in their signatures? If you’re interested in having something similar it’s really easy to do. Have a look HERE to choose a style. If there isn't one you like there, let us know the kind of thing you'd like and we'll try and create one for you.

Because the running of the site completely depends on the kindness of our members, we ask for a small donation in return for a sparkly name, which is explained HERE. Hang around a bit and get to know us before you decide if you'd like to support us!

If you have any questions about anything, just ask. :smile:

Fingers crossed all your dreams come true soon.

xxx


Angel baby April 07, Angel baby December 07, DD1 August 09, DD2 March 11, DD3 October 13

ruthie

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Tuesday, May 4th 2010, 4:52pm

Hi Elizabeth,

I can't offer you much help I'm afraid as I don't know much about the antiphospholipid stuff.

With regards to your thyroid can you give the units as well as sometimes US labs use different units to UK ones.
I'm guessing its mIU/l which is what US labs ususally use.
Normal TSH levels can actually be anything up to about 4 mIU/L but anything over 2 could indicate the early sign of a problem.
Thyroid disease is a really hard one to diagnose. Basically the primary thing tested is your T4 level which is the amount of thyroid hormone you produce. I can't see that figure in your results but I'm guessing it's been done somewhere. If it's low if MAY indicate an underactive thyroid but the problem is that some people have low T4 levels due to other illness and some thyroids will be producing less T4 than they need so be underactive but still be within the reference rangs.
So the next test is TSH, which is the hormone that tells the thyroid gland to produce the T4 hormone. In most cases where the thyroid is underactive the TSH will be increased, because the body recognises that T4 levels are low and chucks out more TSH to try to produce more T4. If however the thyroid is damaged it can't respond.
So classic hypothyroidism is low T4 and high TSH.
Anti thyroid antibodies are often elevated in hypothyroidism as a lot of thyroid disease is autoimmune in nature and caused when the body attacks the thyroid gland.

So my reading would be that with slightly elevated anti thyroid antibodies and sl elevated TSH there may well be a borderline thyroid problem but that would need to be read in context of your T4 levels and clinical signs. If your doctors think the thyroid is a problem they will prescribe thyroxine but looking at your screen there appear to be a few other things a bit out of kilter so they may feel that the thyroid is just one to watch for now. The problem with giving thyroxine on the off chance is that it can then cause over active thyroid and that can cause fertility issues too.

Sadly the rest of it I don't know much about. I know some about NK and cytokines but those appear to be normal for you. The rest I can't help with I'm afraid.

Hope your doctor can give you some answers and help you have a little one.

xx

Tinks

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Tuesday, May 4th 2010, 7:25pm

Hi Liza lou

Your Tsh is fine to be honst :) Tsh level should be between 0.27 -4.20 mU/L and your TSH is 2.07 so this normal hun :) I have a high thryoid - My TSH is slightley elevated at 4.21 - My FT4 is within normal range 12.0 - 22.0 and mine is 16.6 - however my FT3 is HIGH at 7.2 and the norm being 3.9 - 6.8 pmol- so your Tsh is fine hun.

Your antiphospholipids can be treated with prednsilone steriods AND a blood thinner called fragmin/heprin :)

I understand what you mean about the possibility with you taking steriods inregards to your nk cell test BUT the thing is the test says NORMAL so the steriods are doing somthing hey :thumbsup: and this is what you want - you want them gone hun :smile:

I have a immune disorder NK cells on cd19+cd5+ as well as a slightely raised TSH and high FT3 - i had intralipids infusion 2 weeks ago 1 before ttc and offically in the 2ww - 1dpo on steriods and asprin - IF i get bfp i have another intralipids infusion and i will start thyroxine 20mg for the thyroid :)

Feel free to follow my diary the link is in my sig below :D

Good luck hun XX

  • "LizaLou74" started this thread

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Reg: May 4th 2010

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Tuesday, May 4th 2010, 8:12pm

Thank you all for the kind welcome and information! I didn't think that the thyroid would be too much of an issue, but did read online that the doctors at the Beer Center want the TSH below 1.5 when TTC. It will be interesting to see if anything is said about this during my phone consult.

I thought steroids and blood thinners would probably be part of my protocol. I am a little worried about my t regulatory cell level being so low. I have read this is treated with IVIG and I am not sure I have the money for or really want to do IVIG. I am hoping that all I will need is steroids and blood thinners.

I will keep you all posted. My consult is Friday! Counting down the days.

BraveGirl

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Tuesday, May 4th 2010, 8:18pm

hi hon

I am new to all this and having Chicago tests in a week so will watch this thread with interest. Has anyone mentioned intralipds to you? they are an alternative to IvIG x
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

Tinks

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Tuesday, May 4th 2010, 8:20pm

Hiya hun :) the tsh tests i had done where done at the chicago lab where dr beer sent his off to so am sure your TSH is just fine hun :)
As for your T cells i totally understand what you mean about the price of ivig - maybe intralipids could fix this problem - £288 a go inc nurse to give you the infusion at home from health care.

Intralipids is being used more than ivig now 1. because it does the same job 2. Because its so cheap and theres no complications like side effects as its just soya milk and egg yolkes its a protein fusion. My nk cells where tested with ivig in the lab to see if ivig killed them but there never killed them all and only had a small percentage of killing them - so intralipids should work better.

You could ask about intralipids hun for your T cells insted of having ivig :)

Keep us updated hun.

XX

  • "LizaLou74" started this thread

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Reg: May 4th 2010

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Wednesday, May 5th 2010, 5:18am

Brave Girl- Good luck with your results! Keep us posted.

Tinks- Thanks for putting my mind at ease about TSH. I didn't think it was an issue until I read another board that they were recommended synthroid because their TSH was above 2 and had antithyroglobulins. One less thing to worry about would be good. I have read about the intralipids. I would definitely consider those, especially if they are a lot cheaper than IVIG.

chatterbox

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Saturday, May 8th 2010, 10:04pm

:goodluck: hun!

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

  • "LizaLou74" started this thread

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Reg: May 4th 2010

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Monday, May 10th 2010, 9:45pm

Just wanted to update you all on the recommendations from Beer Center. They are recommending steroids, lovenox & baby aspirin (because of multiple gene mutations and antiphospholipids that can increase clotting), folgard (because of MTHFR mutation), synthroid (for TSH >1.5), lexapro (for serotonin < 100) and IVIG (for low tregs and overactive immune system).

I am going to do everything except IVIG right now. I am just not ready to go there, plus it is very expensive. Anyone not follow the recommended protocol completely and still have success?

BraveGirl

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Thursday, May 13th 2010, 4:09pm

Liza if I were you I would consider doping Intralipids instead of IVIG, can you get your doctor to prescribe them for you? x
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
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Friday, May 14th 2010, 11:10am

Like Tinks, when my tests were performed, IVIG didn't help but intralipids did. I would ask the question.... who knows? I haven't actually had treatment yet, and I only have high NK to my knowledge, so can't really help with all your test results. I hope things work out for you.

i'll be popping back to hear good news!


3 IUI and 5 IVF :BFN:
What's the future?
MY DIARY


High NK and high PAI-1
On Metformin & Immune Cycle

  • "LizaLou74" started this thread

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Reg: May 4th 2010

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Wednesday, May 19th 2010, 6:21am

I have heard about the intralipids and them being much less expensive. I guess at this point I just feel like I had one successful pregnancy without ANY treatment at all. It was extremely complicated and I am lucky my son is here today, but I feel like if I address the clotting issues and immune issues with steroids I may have some success. I guess I am just not ready to get really aggressive yet. I have my consult with RE Thursday so I will get his opinion on everything. Good Luck to everyone!




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