Newly diagnosed, ttc questions for thin cysters

waiting for first · 01-15-2003, 02:37 PM

Hiya ladies,
I'm new to these boards. Dh and I are ttc our first, but I've been anovulatory since stopping bcp in early september after 10 years on the pill. In my early teens I had regular cycles; by high school they were irregular but present, but this was always brushed off due to my long distance running. So after stopping bcp and still no AF on my own without prometrium and no ovulation, I knew there were issues.

My gyn did my initial bloodwork, which was normal other than "higher end of normal" testosterone and dheas (61 and something like 345 respectively). He didn't think it was pcos. Transvag US showed multiple small cysts and one ovary slightly larger-gyn said it was normal. In december I took 50 mg of clomid for the first time but it was an anov. cycle unfortunately

I started reading and the more I read about thin cysters the more I was sure I was one of them and needed to get diagnosed. I had my first RE appt. today and he seems to agree, though he wants more bloodwork. He said he doubts I'm IR due to being a thin cyster and no hx of diabetes in family (you can still have IR though can't you???) He's going to RX provera (I've never taken-only prometrium before now) and increase my clomid. He said if I have IR he'll rx met or gluc-I don't think he will otherwise though I know it can be helpful. I plan to ask about it.

In any case, my RE said that thin cysters tend to be harder to treat (which I knew from reading a lot). He said we tend to overstim easier-has anyone else heard that? Someone on another board mentioned thin cysters tend to have lower estrogen levels and get fewer af's on their own...and also tend to have thinner linings-anyone heard that?

I was curious how those thin cysters ttc are being treated whether IR or not iR. If I am not diagnosed w/ IR and he doesn't want to do gluc or met, will a low carb diet help? I don't want to start yet until I have blood drawn so that I don't influence the results.

Do thin cysters tend to need injectibles more often? If you are clomid-resistant, do you tend to be resistant to injectibles or do they tend to work better?

TIA ladies! I'm so glad to have found this board. I've been reading and learning and lurking around here for a few weeks.

shellfish · 01-15-2003, 02:58 PM

my history is almost exactly like yours. I'm a thin cyster also. I'm not IR. I tried Clomid 5 times and it didn't make me o. Our insurance doesn't cover treatment, so we couldn't move on to injectibles. Somehow someway I have had three AF visits without taking prover to start them don't know how that happened. I've never heard that thin cysters are harder to stimulate. However, I know that a lot of poeple can loose weight and start Oing. For a while there I wished that I was overweight so that I could lose weight and that would fix the whole problem. Best of luck with your treatment. I hope you get pregnant very soon!!

youlittletart · 01-15-2003, 03:09 PM

My story is also identical to yours almost. I got first AF at 15 and it was never normal. Long bleeds, no bleeds. Went on BCP, dandy. Went off BCP at 20, no AF. Was dx PCOS- like you hormones on high side of normal, polycystic ovaries, very thin (5'11'', 135 lbs), no history of diabetes, etc. I would take provera to stimulate an AF every 3 months. Went back on BCP 22-26. When I went off this time, regular AF (every 30-35 days, some 40 day cycles). I JUST got back from my first RE appt. All my hormones were normal, I had a cyst on my ovary indiciating ovulation (corpus luteum) and didn't have the little pcos cysts. It was CD 36 though and I didn't get AF til CD 40. He thinks I am a mild case of PCOS- right now, I have no symptoms except I am not getting pg and have longish cycles. So, he suggested that I go on a low carb diet to shorten cycles and improve chances of conceiving. Just started 1/9 so i will let you know how it goes this month! If I don't get pg and the next couple of months, he will put me on glucophage and do an HSG. He says I could be a wee bit IR, but regardless of whether I am or not, he would try glucophage. So, for now, I am not eating soda, juices, sugar of any sort, pasta, potatoes, rice, or bread...no caffeine or alcohol either, and increasing my exercise regime. I'm not limiting any fruits and veggies...need some carbs!! We are planning to have sex every day starting CD9-23...in case I ovulate late. I am putting everything into it this month...we have been technically trying since 7/02...but more like not preventing. THis month I go for the gusto.
I think more thin cysters are clomid resistant (so I have heard) and in that sense can be harder to treat. But the flip side of the coin is we often don't have as many of the really irritating symptoms of PCOS. We may be able to get pg by just modifying diet.
Let's keep in touch since have such similar situations.
Good luck!
Jen

waiting for first · 01-15-2003, 03:19 PM

Shellfish-Thanks for your post. I'm sorry clomid didn't work for you-what doses were you on? Have you ever thought about taking glucophage or metaformin? The new studies show that even in women who aren't IR, they can help get you pg. especially if you are clomid-resistant. You would probably have to pay for the gluc or met out of pocket but that plus clomid would still be a lot cheaper than injectibles. There are some great new studies about the use of gluc and met for women like us on the web if you are curious. Not all docs will do it yet because the research is fairly new but you could print them out and show your dr. or get a second opinion. Please don't give up because clomid didn't work for you by itself. I wish you luck!

You little tart-It was interesting to read your post as well. Have you had b/w to test for IR yet officially? It is interesting that some researchers seem to think like your dr. that even in women who don't test truly IR-they might just have a touch of IR that screws with their hormones and that diet might help. I'm willing to give it a try! It is hard for me though because I was a vegetarian for about 6-7 years in high school and college (I now eat fish and chicken) so I tend to gravitate toward carbs. I eat healthy, but I tend to like brown rice, beans, etc. that aren't low-carb. I do avoid almost all white carbs and eat a lot of whole grains already, but that probably isn't going to be enough. It will be hard for me to get in the mind set of low-carbing! I agree with you though-I would definitely not cut out fruits and veggies unless I absolutely had to-I'd start with just avoiding the potatoes, breads, pastas, etc. as much as possible and increasing my overall protein intake. If that isn't enough, I'll have to be more aggressive I guess.

thanks for the insight ladies!

youlittletart · 01-15-2003, 04:59 PM

I haven't explicitly been tested for IR. I was really hypoglycemic as a kid and had frequent Glucose Tolerance Tests until I was 24 (once a year). While they didn't expressly test for IR, they never noted anything like that. He thinks it is unlikely that I am really IR b/c I am so thin..and will spare me the test for now since he isn't going to base his decision to use gluc on whether or not I am IR. If the diet doesn't work, I will go on met. He is really anti-clomid. He doesn't like the fact that risk of twins is 8-10%...over 4X higher than the average pop. He considers multiples to be a negative outcome so I think he will make me wait before considering that. I'm not yet in a rush and I know I can clomid from my ob/gyn if the re won't budge. We are already knocking heads about stuff. He wants me to stay on met throughout preg. and I don't want to. He isn't concerned about low prog., I am. I know my ob/gyn will also test my prog. if pg and prescribe cream...so I think I can get what I want from the two of them.
As far as low carbing, while not a veggie, I eat pasta like 12 times a week! Wheat pasta, but still. I am also a sugar fiend. Mmmmm, devil dogs, ice cream, soda, yum! I eat well -lots of veggies, bean, protein...but I eat EVERYTHING...lots of it....the good and the bad. My DH is really proud that I just went cold turkey and gave it all up. I usually am not known for my willpower...particularly when it comes to self deprivation!! But I want this darn baby so I am sticking to it! THe whole thing about being less hungry and having to eat less...not happening for me as of day 7. Today alone I have eaten a low carb choc shake and 1/4 honeydew melon for breakfast, nuts for a snack, chicken and eggplant for lunch, 1/2 an orange...it isn't even 1 pm here yet!!! I tend to eat all the time so this isn't unusual!
jen

scbegonias · 01-15-2003, 06:11 PM

i sound pretty similar to the rest of you. i started af when i was almost 15 and my cycles were irregular and usually painful. three years later i was diagnosed by an endo with "mild pcos."

i was put on the bcp (which changed through the years due to newcomers on the market). i stayed on it for ten years with one break. during that time (i was about 22...i'm now 28) i had a few cycles and then af disappeared. i used provera, got and af, and then went back on bcp.

last march, in preparation for ttc and to try to get healthy, i stopped bcp once again. my first cycle was 30 days and painful. i started temping and such to try to get a clue whether or not i was Oing. after that, my cycles lengthened to about 45 days (with O around 30 days). i started taking vitex at the end of september, had one 35 day cycle, and now they seem to have regulated to 30 days with O around cd15!!!!

all through this time i was having hypoglycemic episodes, especially during working out. my doc at the time told me to drink gatorade...and asked why the heck i was on the vitex. we'll, wasn't it obvious that it was helping me? i found a new doc quick.

my new doc is supportive of the vitex (yah!!! i love it), and has me on a sugarbusters-like diet (she didn't test me for IR...she doesn't believe that its a fool proof way and would rather have me eating well). i avoid all simple carbs (except for corn chips now and then), eat many whole grains, fruits, and veggies (DH and I have been doing this for about two years now), eat more proteins (eggs and nuts are my pals now) and don't really eat any sugar (except for premium ice cream or a piece of cake now and then). i feel so much better...not as tired, many fewer hypog episodes (actually only one in the last two months...and they used to happen a few times a week), and i don't have to pee as much (strange, but well liked side affect).

i would recommend working on your diet, as you've started to do. it's difficult at first, but after a while you'll notice that your lifestyle has changed. Good luck!

waiting for first · 01-16-2003, 06:51 PM

Thanks for the information ladies. I went out last night with dh to borders and bought the low carb cookbook by fran mccullough (she follows protein power with the Eades's) and it is pretty impressive. She has a new one out but I bought the very first one to start out with right now.
The whole IR/thin pcos thing is so interesting...it seems like all the docs have a different view. My RE said since there is no hx of diabetes and that I'm not overweight, he doubts I am IR. But I've also read that there are a lot of docs who think that every person with pcos thin or heavier has some level of IR, even if the tests are sensitive enough to show it. That is why gluc and met work for a lot of the women who aren't technically dx'd with IR (as well as diet working for them). Fascinating stuff! So I'm willing to try low carbing. I feel like I have to make a significant effort though because we have eaten whole grains for years-we never have white pasta or white bread in our house-always whole wheat/whole grain. We eat a lot of fruits and veggies. I do like sugary stuff here and there though too so I'm just going to try cutting a lot of that out and see what happens. I guess if one "level" of low carbing doesn't work, I'll just get more aggressive and see what happens.
My RE doesn't seem big on Rx'ing met or gluc for women who don't test IR, although I know the latest studies show it helps a lot. I'm trying clomid alone (100 mg) next cycle. If I don't respond to that I plan to ask him to consider adding gluc or met. I'll bring along the studies i have printed out and see what he says. If he refuses, I'll just have to get another opinion!
For those who noticed a difference w/ low carbing as far as their cycles, how long did it take? I've heard all kinds of numbers...

Thanks again thin cysters! You are a great help...

Beth

AmandaC · 01-19-2003, 03:19 PM

Hi waiting for first

You had some qs about injectibles and thin cysters in your first posting. I wish you every success with clomid/metformin etc. My story is v similar to the rest. Never really had regular AF and AF didn't start at all until I was 16.
Anyway I didn't have any joy with clomid and went on to injectibles. The main problem is as you mentioned the response for thin cysters being a bit hard for the medics to manage. I would start each cycle with a very sluggish response and then things would go bonkers. I had a couple of cycles cancelled because there were too many follicles. When I did IVF there were loads (about 30 or 40) and it was touch and go whether the cycles would go ahead. I did get pregnant on injectibles but got OHSS. I understand that all cysters are prone to this but especially thin cysters. f you do end up doing injections then what I was told was to drink loads of water and eat high protien during the cycle as this helps the ohss.
Lots of luck and baby dust
Amanda C

PS my doc doesn't think i'm IR either but i get faint if i miss/delay meals and dietary changes have really helped. I was drinking a can of coke every day AAH! but thank goodness for better info.

Anyway best of luck again. AC

waiting for first · 01-20-2003, 11:14 AM

Thanks so much AManda. I anticipate that if I have to move on to injectibles things will be tricky. I'm hoping clomid 100 mg does the trick, but if not I plan to request from my dr. we try gluc or met with the clomid the following cycle before moving up to 150 mg or moving to injectibles. He might take some persuading though-I think he might be one of the docs who is against met or gluc unless you test IR, and he doesn't think I will test postive for IR. I plan to show him all of my research articles I've compiled in favor of gluc or met plus clomid even for the women who don't technically test + for IR. If he won't do it, I'll get a second opinion I guess.
I know women with PCOS have a higher m/c rate-do you know if that is more closely linked to IR or more to pcos (I realize they are intertwined even in the women who don't technically test + for IR)? I am worried a lot about that aspect of things-all this effort to hopefully get pg and then the huge risk of m/c-I've been told 30-50% with pcos??
Thanks again for the information and I wish you lots of luck ttc your second beautiful baby!!

Beth

AmandaC · 01-20-2003, 12:39 PM

Hi Beth

When I first started with injections the dr said that the m/c rate if you conceive on the injections is as for normal pg. That might give you a clue as to whether the higher m/c rate is to do with pcos or ir, i think it suggests that its to do with the pcos since you are presumabley still ir once pg however you get pg, but as you say they are inextricably entwined.

If this comes out looking funny sorry dd is fiddling!

On the metformin I found that it didn't help even though I do get some symptoms that suggest ir. I gave it 4 months but I didn't combine it with clomid.

I have got a book that has some stuff about pg outcomes - it covers most aspects of pcos and is aimed at medics. It was also quite expensive about £50 uk (i think thats about us$80 or US$90). Its called "Polycystic Ovary Syndrome" ed Gabor T Kovacs publisher Cambridge Univeristy Press. ISBN 0 521 66073 4 (www.cup.cam.ac.uk or cup.org)

Its a bit repetitive because each chapter can stand alone so the authors keep going back to a basic description of pcos and it is very tentative about reaching any conclusions because of its target audience.

Best wishes Amanda C

PS The book does treat thinnies as a bit of a footnote which you may find limits how useful it is. AC

waiting for first · 01-20-2003, 01:16 PM

Thanks Amanda. Do you know if the overall m/c rate (including without injectibles) is equally high in those with pcos without IR (even though I realize they probably have some underlying IR) and in those with IR? Do thin cysters have the same kind of m/c rate or is it worse for us?

I am interested in that book-thanks for the information. It is frustrating how often the "thinnies" (I love that!) are treated as a footnote especially since we can be more challenging to treat!

Beth

AmandaC · 01-20-2003, 04:37 PM

Hi Beth
OK this is what I think it says (bear in mind its quite teccy and i'm an accountant not a doctor)
it covers three issues to do with pcos and m/c. it may be to do with increased LH early on but there are some studies going both ways. The evidence is that some showed a lower mc rate with GnRH agonist which kept the LH down early on but some studies didn't get this happening.
the second was to do with ir. a paper from 1989 observes that mc rates are higher in thinnies

.it also said that larger cysters lower their mc rates if they loose weight which is evidence for the mc rates being to do with ir.
the final bit was to do with increased androgens inc testosterone being one of the factors in raised mc rates.
later it also had a bit about clomid and it being embryotoxic in animals thus contributing to mc rates.

anyway its all a bit inconclusive and leaves me

hope this is helpful
Amanda C

waiting for first · 01-20-2003, 05:53 PM

thanks for clarifying Amanda! I appreciate it! I worry about the higher m/c rates in thinnies...scary. I can't bear the thought of all this effort to get pg and to lose it. Uggggh. I wonder how high they consider high testosterone? My level is 61 for total testosterone (higher end of normal)-I haven't had my free testosterone tested yet (coming up with next batch of b/w). My dheas is pretty high-345 or something close to that (again "higher end of normal").

I guess I'll just stick with low carbing and hope that helps any underlying IR even if it is very subtle and also hope that it helps lower my T levels.

Thanks again Amanda for your explanation-it was very helpful!

beth

jholden · 01-22-2003, 03:15 AM

i am a thin person and when i read some information regarding PCOS that said something about gaining alot of weight i was really worried, as i already have self esteem issues and i have battled with bulimia and now i am trying to battle depression. if any one is in the same boat as me feel free to contact me at jodie_holden@hotmail.com.

I am also a PCOS suffere