Life is progressing well in NYC. I think at this rate, my liver is going to be pickled (quite a change from the I-don't-touch-alcohol slogan which as the backbone of last year) but I'm slowly settling in and meeting new people. Loads of fun!
I *finally* had my new RE appointment today (Dr. Licciardi, NYU). I walked out of it fairly pleased, on the whole.
The highlights
Finding out IUIs will be covered (or so I believe at this point)
No forking out 300 odd dollars for a new consult- only a flat small copay!
He agreed right off the bat to genotype me at the FMR1 locus (this is also the fragile X test)
The Plan Forward- do I really have a problem and can it be fixed??
We have no idea why the crapfest that was the last year really occurred. I think the question to ask is- do lean/ovulatory PCO woman really have problems either conceiving or maintaining a pregnancy? There is a trend to suggest this, but really large, well designed studies have not been done. What I want is the opposite of the studies that are done- I want them to take women who conceive easily and have had multiple healthy pregnancies, and ask if THEY have lean PCO and thyroid autoimmunity and heightened NK cell activation and anti-phospholipid antibodies and all the million other vague problems that plague infertiles. Sigh.
Dr. L was willing to go with the theory that I might have lean/ovulatory PCO, but was completely noncommittal (as any sensible person would be) on whether this was the real cause of my losses and whether metformin would help me. The way he put it- there are two types of PCO patients...The first category, that I fall into, which he referred to as 'New York PCO' (ha) wherein women are thin, are not visibly too hirsute and might even ovulate regularly. Then there is the second class of overweight women with overt glucose metabolism issues and ovulatory problems. In his opinion, metformin really helps the second category, but seems to not do so much for the first. I've read the studies, I've read the reviews discussing the studies, I can't really be sure metformin helps either, but nor can I discount it. There are studies which show it does seem to reduce the antral follicle counts and AMH levels, however bigger and better designed studies are needed IMO. So as it stands- we agreed I would start metformin about 3-4 months prior to my TTC cycle. I think there would be significant debate about when to end it- I would probably atleast go to the end of the first trimester.
We are also getting my glucose metabolism investigated. I've had fasting glucose tests done and they are excellent- normal sugar levels and actually LOW insulin, indicating insulin sensitivity, not resistance. What we have not done though, is a glucose tolerance test. Given that I love to shock my system with an insanely sharp sugar spike atleast once a day (such a good idea for a girl coming from a family of type 2 diabetics...NOT), it will be interesting to see how my body responds.
More on vitamin D and BBTs and charting and follicle counts to come soon----and I've also got the doctor reviews to put up. Not that I have that many- but- my page is now the FIRST that comes up when you do a google search! Its even pulling up doctors mentioned in the comments- super cool!
I *finally* had my new RE appointment today (Dr. Licciardi, NYU). I walked out of it fairly pleased, on the whole.
The highlights
Finding out IUIs will be covered (or so I believe at this point)
No forking out 300 odd dollars for a new consult- only a flat small copay!
He agreed right off the bat to genotype me at the FMR1 locus (this is also the fragile X test)
The Plan Forward- do I really have a problem and can it be fixed??
We have no idea why the crapfest that was the last year really occurred. I think the question to ask is- do lean/ovulatory PCO woman really have problems either conceiving or maintaining a pregnancy? There is a trend to suggest this, but really large, well designed studies have not been done. What I want is the opposite of the studies that are done- I want them to take women who conceive easily and have had multiple healthy pregnancies, and ask if THEY have lean PCO and thyroid autoimmunity and heightened NK cell activation and anti-phospholipid antibodies and all the million other vague problems that plague infertiles. Sigh.
Dr. L was willing to go with the theory that I might have lean/ovulatory PCO, but was completely noncommittal (as any sensible person would be) on whether this was the real cause of my losses and whether metformin would help me. The way he put it- there are two types of PCO patients...The first category, that I fall into, which he referred to as 'New York PCO' (ha) wherein women are thin, are not visibly too hirsute and might even ovulate regularly. Then there is the second class of overweight women with overt glucose metabolism issues and ovulatory problems. In his opinion, metformin really helps the second category, but seems to not do so much for the first. I've read the studies, I've read the reviews discussing the studies, I can't really be sure metformin helps either, but nor can I discount it. There are studies which show it does seem to reduce the antral follicle counts and AMH levels, however bigger and better designed studies are needed IMO. So as it stands- we agreed I would start metformin about 3-4 months prior to my TTC cycle. I think there would be significant debate about when to end it- I would probably atleast go to the end of the first trimester.
We are also getting my glucose metabolism investigated. I've had fasting glucose tests done and they are excellent- normal sugar levels and actually LOW insulin, indicating insulin sensitivity, not resistance. What we have not done though, is a glucose tolerance test. Given that I love to shock my system with an insanely sharp sugar spike atleast once a day (such a good idea for a girl coming from a family of type 2 diabetics...NOT), it will be interesting to see how my body responds.
More on vitamin D and BBTs and charting and follicle counts to come soon----and I've also got the doctor reviews to put up. Not that I have that many- but- my page is now the FIRST that comes up when you do a google search! Its even pulling up doctors mentioned in the comments- super cool!
I also have been diagnosed with PCOS but don't have insulin resistance. I started Metformin about a week and a half ago in hopes it will reduce my chance of miscarriage (I had one in Feb). I am on a low dose 500 mg/day. I do have high DHEA levels but no problems with glucose or insulin. What are your hormone levels like? I am not overweight and it is unclear now whether I ovulate regularly or not. I don't think I do every month, but have in the past.
ReplyDeleteI have a post about Vitamin D and take in regularly. I am looking forward to reading about the additional research to you/find.
I'm so sorry for your loss. It sounds like we have loads in common. To answer your question about hormones, my testosterone is low, I have excellent LH: FSH ratios, my AMH is high (in the 5s), my DHEAS is high (in the 200s) and I have very mild hirsutism. I'm thin and ovulate regularly. By the rotterdam criteria, I have ovulatory PCO. Whether it is the cause of my problems is the million dollar question.
ReplyDeleteI do believe the vitamin D deficiency feeds into my PCO phenotype- but its not the whole story.
Also...if you have had antral follicle counts done before- it would be very interesting to see if metformin changes either that or your AMH. 500 mg is a low dose though- are you planning to scale up slowly?
Do you have a blog? I'd love to follow!
So sorry to hear about all this craziness.
ReplyDeleteI think there is actually a 3rd category of PCOS patient and I fit in there. I'm not obese, not hirsute, etc. but I am definitely insulin resistant and metformin helps me greatly. My cycles were never totally out of control but the metformin brought them from a regular 35 days to 26 to 30 and I am definitely ovulating each cycle. It also got rid of what I like to call my 'brain fog'. Without it I had great difficulty concentrating and that isn't much of a surprise when you consider how it works. It also solved so many other problems for me that stumped my specialist as they were the complete opposite of what she sees in her patients. Even my sleep issues resolved.
The 2-hour GTT is very telling. Everything is normal for me at fasting but my insulin levels without metformin go sky high after the 2-hour GTT. My glucose levels drop really low in response. The fact that you've got Type 2 diabetics in your family is setting off the alarm bells making me think that if you don't have PCOS you've got to have some other related endocrine issue.
Well done settling in and meeting new people. I say drink as much as you want while you can. All sounds promising on the Dr. front. Good luck moving forward...I'm pulling for you.
ReplyDeleteGlad you had a good visit. How do you diagnose lean/ovulatory PCO?
ReplyDeleteSounds like you're getting a lot of great info - this is fantastic!
ReplyDeleteJay, really glad that you're finding your footing in New York. It's a great place (but can also occasionally be a lonely town). Also glad that Dr. L is going to work with you and be so thorough. FWIW, a friend of mine saw him last year. She had POF. And now has twins.
ReplyDeleteWhitney...its so complicated :(
ReplyDeleteIf you ovulate regularly and are thin, but want to check for ovulatory PCOS, the tests to run are:
Hormones- LH, FSH, AMH,testosterone, DHEAS.
Check for hirsutism (ferriman Gallway scoring), polycystic ovaries (ultrasound) and also run the glucose tolerance test
To diagnose lean/ovulatory PCOS, you need to have the ovarian parameters (polycystic ovaries, high AMH) and the hyperandrogenism parameter fulfilled (either testosterone or DHEAS high and/or hirsutism alone). Andrea brought up an excellent point that the glucose tolerance test can be very telling...you could be insulin resistant and still might not have the other parameters of PCOS, but could still have PCOS-related infertility issues.
Hope that helps!
Thanks for your input Andrea, I think you bring up an excellent point. did you have polycystic ovaries?
ReplyDeleteI'm not looking forward to the GTT though;6 blood draws in 3 hours, or something like that...ugh!