How to get treatment? (have hashi's, suspect clotting issues, celiac)

Airmide · 03-07-2009, 06:32 AM

I'd love to find out more about getting properly treated both for my health and for a successful pregnancy. I'm willing to do whatever testing would be covered by insurance if I could find a cooperative doctor. Really I care more about treatment than about diagnosing every little thing if it wouldn't change treatment.

We are paying out of pocket for everything infertility related, including any testing that is coded that way. And I'd really like to not have to travel for diagnostics or treatments. (I'm in Portland Oregon)

I'd really appreciate any help and advice anyone can offer!!

Very brief summary of my health: Hashimotos, slightly low progesterone, most likely celiac and strongly suspect blood clotting issues. Failed first IVF w/ICSI for severe male factor. So far no (acknowledged) female fertility issues diagnosed.

More details of my situation in case it matters:

I've been on Armour for nearly 3 years. I feel like most of my symptoms are fairly controlled but whenever I can get them tested my antibodies are still sky high. (I can find the exact test results if it helps, I know I have both kinds with one listed at >2000 and if I remember right the other around 300)

I have enough symptoms of celiac that I didn't bother fighting to get tested and just went gluten free 1.5 years ago. It's made a huge difference in my health and weight, and I get very sick if I have the smallest amount of gluten so I'm sure it's a problem for me.

Possibly TMI but I think relevant: I do ovulate on my own, but even on Armour and prometrium, my cycles are irregular and generally long. I have insanely painful cramping and spot for a week before my period, which then lasts 5-7 days. Some cycles are better than others, but usually the cramps are so bad on the first day that even with vicodin AND baclofen I am hardly able to get out of bed to use the bathroom. The other days (for the week before and during) they come in waves of varying intensity and duration.

I had an exploratory laproscopy and the doctor did not find ANY evidence of endometriosis (we went in convinced that was the cause). Doctors often suspect PCOS, but I've had multiple ultrasounds and never found any cysts, and my testosterone is actually low.

I had my blood drawn for some routine tests once and was asked if I'd been diagnosed with a clotting disorder, because my blood clotted before it even got into the tubes! But other times I feel like I am very tender and seem to bruise pretty easily.

I can add more details if anyone is interested too.

Thanks for reading this and TIA for any help you can provide!!

lw962 · 03-07-2009, 02:00 PM

Hi Air,

I have a host of immune issues too. After lots of trial and error, i have finally found a clear direction. I have scheduled 2 telephone consults with world renowned reproducive immunologists. Dr. Coulam of Rinehart Center was $350 and Dr. T of SIRM (sher institute of reproductive medicine) is free. My local doc is willing to follow any immune protocol they devise.
But which ever doc you decide to go to, please make sure they send your bloodwork to a reputable immune lab like, millenova or repromedix. im not sure if your insuance will cover labs from these facilities but at least you will know you results are reliable. Also you may want to go to a hemotologist and get tested for genetic clotting disorders that can lead to implantation failure.
being that you have antibodies and evidence of clotting disorder i would imagine that you could be rx'd, IVIG, heparin, baby aspirin, and possibly prednisone. but the doc will do all the neccesary tests b4 rx any of these meds.
Lots of luck,
Lynn

Airmide · 03-07-2009, 11:05 PM

Thanks Lynn!! Sounds like you've put a lot of work into your path. I would love to know how things go for you and what those doctors say.

It's great to know Dr. T is a free consult! How did you get your local doctor to agree to collaborate? I have talked with all my doctors, both R.E. and regular doc, and consulted with an additional R.E. and they all say it's completely unnecessary to test or treat for immune disorders or clotting disorders. I finally talked my regular doctor into running some clotting tests but only a couple I think, and I know there are a lot more than that!

So will you consult twice with both those doctors? Once for testing and once for treatment plan after tests?

I got the name of at least one local hematologist. Do you know if it's likely they will run a full panel without requiring a lot of persuasion or justification?

I am hoping I can get at least some of it covered by insurance. I've had great luck getting things covered before, even an R.E. visit, under the (very accurate) title and coding of Menstrual Irregularities, and then I think under Hashimoto's/hypothyroid.

lw962 · 03-08-2009, 10:41 AM

Hi,

To find my doc, i merely asked my old re for a doc that worked lots with immune issues. also, i saw an acupuncturist, who specialized in fertility, that recommended many docs in my area that believed in immune issues. i did a search online for local docs that specialized in recurrent pregnancy losses (rpl). i have been pg 3 x's naturally and loss each early. that was my 1st indication that there was an immune issue. unfortunately after my 3rd pg, i have been unable to get pg on my own or with medical intervention. My suggestion to you is to also do a search online for local docs that specialize in RPL and implantaion failures- these docs definitely do immune tests & treatments.
My 1st re kinda believed in immune tests, so he did all my labs. but unfortunately he only treated me with heparin and baby aspirin. he didnt believe in treating me with ivig.
so after 3 different re's and half hazard attempts at treating my immune issues, i finally contacted the specialized reproductive immunologists. luckily my current re believes in these docs and is willing to work with them.
my consult with dr. coulam is just a 1 time deal. she sent my immune protocol to my doc the same day as our telephone consult.
Since SIRM is free im gonna assume there will be a follow-up in which i will have to pay. But i wont be sure until my conssult on tuesday.
because i had my labs done a couple of years ago, i forwarded those results to the docs for review b4 my consults. so no more labs for me.
the hemotologist will work with you if you insist that you are suffering from implantation failures and u and your re want to rule out any genetic clotting disorders.
Make sure you go to the millenova website and learn about the immune tests just to familiarize urself. also visit repro-med. net and read about the 5 categories of immune problems, very informative.
one last thing, there maybe a few things you can start doing now if you suspect that you have immune/clotting issues. like your vitamins, baby aspirin, folic acid, omega fish oil, vit. D, Vit. B12, etc. search the thread for recommended vitamins and dosages.
i will let you know about my consult on tuesday. i hope it goes well.

MichelleinMA · 06-06-2009, 08:09 PM

I also have Hashimoto's and Celiac, plus IgA deficency. I was wondering if you found a doc? What did you learn?
My Celiac docs have assured me that there are no negative pregnancy outcomes, but I can't believe that!

03-07-2009, 06:32 AM	#1 (permalink)
Airmide 0-99 post 2 of hearts Join Date: Nov 2007 Location: pacific northwest Posts: 21	How to get treatment? (have hashi's, suspect clotting issues, celiac) I'd love to find out more about getting properly treated both for my health and for a successful pregnancy. I'm willing to do whatever testing would be covered by insurance if I could find a cooperative doctor. Really I care more about treatment than about diagnosing every little thing if it wouldn't change treatment. We are paying out of pocket for everything infertility related, including any testing that is coded that way. And I'd really like to not have to travel for diagnostics or treatments. (I'm in Portland Oregon) I'd really appreciate any help and advice anyone can offer!! Very brief summary of my health: Hashimotos, slightly low progesterone, most likely celiac and strongly suspect blood clotting issues. Failed first IVF w/ICSI for severe male factor. So far no (acknowledged) female fertility issues diagnosed. More details of my situation in case it matters: I've been on Armour for nearly 3 years. I feel like most of my symptoms are fairly controlled but whenever I can get them tested my antibodies are still sky high. (I can find the exact test results if it helps, I know I have both kinds with one listed at >2000 and if I remember right the other around 300) I have enough symptoms of celiac that I didn't bother fighting to get tested and just went gluten free 1.5 years ago. It's made a huge difference in my health and weight, and I get very sick if I have the smallest amount of gluten so I'm sure it's a problem for me. Possibly TMI but I think relevant: I do ovulate on my own, but even on Armour and prometrium, my cycles are irregular and generally long. I have insanely painful cramping and spot for a week before my period, which then lasts 5-7 days. Some cycles are better than others, but usually the cramps are so bad on the first day that even with vicodin AND baclofen I am hardly able to get out of bed to use the bathroom. The other days (for the week before and during) they come in waves of varying intensity and duration. I had an exploratory laproscopy and the doctor did not find ANY evidence of endometriosis (we went in convinced that was the cause). Doctors often suspect PCOS, but I've had multiple ultrasounds and never found any cysts, and my testosterone is actually low. I had my blood drawn for some routine tests once and was asked if I'd been diagnosed with a clotting disorder, because my blood clotted before it even got into the tubes! But other times I feel like I am very tender and seem to bruise pretty easily. I can add more details if anyone is interested too. Thanks for reading this and TIA for any help you can provide!!

03-08-2009, 10:41 AM	#4 (permalink)
lw962 1000-4999 post queen of hearts Join Date: Oct 2007 Location: Miami, FL Posts: 3,775	Hi, To find my doc, i merely asked my old re for a doc that worked lots with immune issues. also, i saw an acupuncturist, who specialized in fertility, that recommended many docs in my area that believed in immune issues. i did a search online for local docs that specialized in recurrent pregnancy losses (rpl). i have been pg 3 x's naturally and loss each early. that was my 1st indication that there was an immune issue. unfortunately after my 3rd pg, i have been unable to get pg on my own or with medical intervention. My suggestion to you is to also do a search online for local docs that specialize in RPL and implantaion failures- these docs definitely do immune tests & treatments. My 1st re kinda believed in immune tests, so he did all my labs. but unfortunately he only treated me with heparin and baby aspirin. he didnt believe in treating me with ivig. so after 3 different re's and half hazard attempts at treating my immune issues, i finally contacted the specialized reproductive immunologists. luckily my current re believes in these docs and is willing to work with them. my consult with dr. coulam is just a 1 time deal. she sent my immune protocol to my doc the same day as our telephone consult. Since SIRM is free im gonna assume there will be a follow-up in which i will have to pay. But i wont be sure until my conssult on tuesday. because i had my labs done a couple of years ago, i forwarded those results to the docs for review b4 my consults. so no more labs for me. the hemotologist will work with you if you insist that you are suffering from implantation failures and u and your re want to rule out any genetic clotting disorders. Make sure you go to the millenova website and learn about the immune tests just to familiarize urself. also visit repro-med. net and read about the 5 categories of immune problems, very informative. one last thing, there maybe a few things you can start doing now if you suspect that you have immune/clotting issues. like your vitamins, baby aspirin, folic acid, omega fish oil, vit. D, Vit. B12, etc. search the thread for recommended vitamins and dosages. i will let you know about my consult on tuesday. i hope it goes well. Last edited by lw962; 03-08-2009 at 10:45 AM.

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03-07-2009, 02:00 PM	#2 (permalink)
lw962 1000-4999 post queen of hearts Join Date: Oct 2007 Location: Miami, FL Posts: 3,775	Hi Air, I have a host of immune issues too. After lots of trial and error, i have finally found a clear direction. I have scheduled 2 telephone consults with world renowned reproducive immunologists. Dr. Coulam of Rinehart Center was $350 and Dr. T of SIRM (sher institute of reproductive medicine) is free. My local doc is willing to follow any immune protocol they devise. But which ever doc you decide to go to, please make sure they send your bloodwork to a reputable immune lab like, millenova or repromedix. im not sure if your insuance will cover labs from these facilities but at least you will know you results are reliable. Also you may want to go to a hemotologist and get tested for genetic clotting disorders that can lead to implantation failure. being that you have antibodies and evidence of clotting disorder i would imagine that you could be rx'd, IVIG, heparin, baby aspirin, and possibly prednisone. but the doc will do all the neccesary tests b4 rx any of these meds. Lots of luck, Lynn

03-07-2009, 11:05 PM	#3 (permalink)
Airmide 0-99 post 2 of hearts Join Date: Nov 2007 Location: pacific northwest Posts: 21	Thanks Lynn!! Sounds like you've put a lot of work into your path. I would love to know how things go for you and what those doctors say. It's great to know Dr. T is a free consult! How did you get your local doctor to agree to collaborate? I have talked with all my doctors, both R.E. and regular doc, and consulted with an additional R.E. and they all say it's completely unnecessary to test or treat for immune disorders or clotting disorders. I finally talked my regular doctor into running some clotting tests but only a couple I think, and I know there are a lot more than that! So will you consult twice with both those doctors? Once for testing and once for treatment plan after tests? I got the name of at least one local hematologist. Do you know if it's likely they will run a full panel without requiring a lot of persuasion or justification? I am hoping I can get at least some of it covered by insurance. I've had great luck getting things covered before, even an R.E. visit, under the (very accurate) title and coding of Menstrual Irregularities, and then I think under Hashimoto's/hypothyroid.

06-06-2009, 08:09 PM	#5 (permalink)
MichelleinMA 0-99 post 2 of hearts Join Date: Jun 2009 Location: Massachusetts Posts: 1	I also have Hashimoto's and Celiac, plus IgA deficency. I was wondering if you found a doc? What did you learn? My Celiac docs have assured me that there are no negative pregnancy outcomes, but I can't believe that!