Thin Cyster with IR = SEVERE FORM OF DISEASE!!?

Bethany · 03-20-2003, 12:51 PM

Hi Thin Cysters,
I just came back from a meeting with my RE (I just found out I am pg) & I found out some upsetting news about IR in thin women.

I was asking my RE if I could remain on Met while pg b/c it seems to reduce the risk of m/c. He wants me to d/c it b/c not enough studies have been done to be totally certain it's safe for the fetus.

Anyways, in the course of our talk I asked if continuing my low carb diet would help me not to m/c, if I stop Metformin & guess what he said!!?
He told me that thin cysters w/ IR are hard to treat b/c usually IR is made much worse or even caused by being overweight. Therefore in these larger women with IR losing weight can reduce or even eliminate the IR. In my case he said that being thin & having IR means I'm the "real deal" & have a severe form of the disease. Nothing can help me! He said that even low carb will never make my insulin levels normal -- even if I don't eat at all my levels will always be high!

I said "That means that if I ever get fat I'll be in real trouble?" & he just looked at me & said "You cannot get fat. You must remain thin your whole life."

I guess that is pretty good motivation to stay thin, but geez!! I was surprised to find out that us thin cysters with IR are even worse off that the bigger women with IR.

Anyone have any info or helpful advice?
Feeling discouraged,
Elizabeth

AmandaC · 03-21-2003, 01:19 PM

Hi Bethany

I've also been told that I'm a "challenge" and don't put on weight etc. I do have some good news though. When I was pg I felt "normal" all the way through and about 3 months after the birth was about as slim as ever (and had pg boobs as well so looked quite curvy). Once all the pg and breastfeeding hormones were out of my system I did gain a little, however I have been doing herbs and although I wouldn't if I was pg you might find them good after for general symptoms. I ran out and wasn't seeing my herbalist for a week and the sugar cravings without the herbs were quite noticable. Anyway congrats on being pg and good luck
Amanda C

Kittycat · 03-21-2003, 02:19 PM

Ive heard the same thing. I'm also thin with PCOS.

My doctor told me that those of us who are thin often have a much more severe and resistant cases of PCOS than our overweight cysters.

When I first began ttc I was very confident I would get pg when I read of all the success that most women with PCOS have had in taking clomid. Unfortunately I did not respond to clomid or anything else and have been ttc for 6 years. I also learned that overweight women with PCOS tend to respond much better to drugs like clomid, and benefit very much from weight loss and exercise. It doesn't matter as much what we do, because we have IR and PCOS unrelated to weight issues. It really is the "real deal" and is very hard to treat.

Kathie · 03-21-2003, 02:44 PM

Girls-- I don't buy it!!

Drs. have been ignorant about this disease my whole life and these statements just prove they have a long way to go before they get this thing (pcos) figured out.

That's like saying breast cancer is worse than rectal cancer--it is all cancer and it is all bad.

I have been thin and fat with this disease---

to tell you that us fat ones are luckier or whatever is just ridiculous.

All it says it that there are different forms of this disease and one day they will call these diseases by different names.

Insulin resistance apparently doesn't cause you to put everything in your fat cells before you have time to use it and keep it there, but it does the fat ones. There must be a change in the way thin cysters bodies react to their elevated insulin.

For a Dr. to say that is worse or better is like saying you are worse off to have a broken hip than a broken knee.

It is no wonder most of us get furious with Drs. on occasion.

Kathie · 03-21-2003, 02:57 PM

I guess what these dumb Drs. should be saying is

We have a better idea of how to treat women who get obese from this disease than we do about women who don't.

I would rather hear them say--we are still really more ignorant about how to treat a thin cyster than a fat one.

But to have them say you are more ill----

let these gentlemen walk a mile in our shoes and then yours before he makes that assessment.

I am sure if I were thin this disease would have less impact on my day to day life. I am sure thin cysters have fewer people judging them--and you've never heard a Dr. say to you that it is all your fault that you have pcos because you are fat, because in your case they know that is definitely not true--the fat cyters carry the additional burden of being blamed for their pcos. And another additional burden of being told they are going to die of cancer or heart disease because of that fat.

Just for the record---I don't think there are any cysters---fat or thin--who have caused themselves to have this disease by anything they do--including what they eat---but I do believe changing what you eat can sometimes lessen the burdens of this disease.

AmandaC · 03-21-2003, 04:44 PM

I don't think that any of us thin or overweight are lucky in having pcos and I am very glad that along with the acne and hair and infertility I don't have to cope with comments about my weight. I agree with you Kathie that when more research has been done there will be different names for the two different types of pcos - maybe weight sensitive and weight insensitive pcos.

Some of the stuff that is written about pcos and thin cysters suggests that we are thin despite having pcos and therefore must handle the ir etc differently. I think from my experience that thin cysters (by which I mean still got the symptoms although thin) have pcos despite being thin - I think that we can still become overweight - and if we do it can't be good news for our pcos since we'll have a baseline of too much oestrogen and ir exacerbated by the oestrogen and ir that is related to weight gain.

I think that there are some specific frustrations related to being a thin cyster - we know that for us weight loss will be of limited use and we generally get ignored in the research - but then again pcos is frustrating for all of us.
Amanda C

Kittycat · 03-21-2003, 05:19 PM

An argument can be made for both sides (fat and thin) of which side has it worse. Being thin, I think the heavier cysters have it much worse in the sense that they have to deal with society's stereotypes, doctor's blame/accusations, etc. along with all the other stresses of PCOS.

On the other hand, I have found through my personal experience, extensive reading and research, and information from my RE (Who is one of the leading PCOS doctors/scientists in the nation regarding PCOS) I believe that thin women with PCOS often have a more severely resistant type of PCOS.

I have never been overweight. I'm 30 and I've had probably 20 natural periods in my LIFETIME. (About one per year, often less). Ive been ttc for 6 years, do not respond to clomid, am taking 2000 mg of metformin (which has done nothing to restore my periods, by the way) and have taken injectables, gnRH and a whole host of other treatments that have failed. Many who are obese also don't respond to clomid and other meds, but not as often as women who are thin. I am bewildered when I hear of women getting pg on 50 mg of clomid. My body laughed at 200 mg and did nothing. Ive accepted the fact that I will never conceive and am adopting, but I (like others who don't respond to treatment) am thin and a great many who make up the statistic of those who don't ever conceive with PCOS are thin. (Which is ineresting because over 60% of women with PCOS are heavier so it would seem that heavier Cysters would make up moe of that stat)

Losing weight will do nothing for me. Exercising more will do nothing. Taking more metformin will do nothing for me. Taking clomid will do nothing for me. My doctor believes I have never ovulated on my own in my lifetime.

It's true the doctors don't know much about PCOS but it seems that thin women with PCOS often tend to respond less to treatment than heavier cysters, unfortunately.

Bethany · 03-21-2003, 05:19 PM

Certainly I agree -- I am thankful I don't have the additional burden of being heavy on top of everything else.
However, at least if I were overweight there would be something I could do to make a real difference for myself, maybe even rid myself of IR. It frustrates the hell out of me that diet & exercise won't make a difference & there's nothing I can do.

Elizabeth

AmandaC · 03-21-2003, 06:03 PM

Hello again Elizabeth

I don't think that we should ignore diet altogether as thin cysters. After reading about pcos and ir etc I ahve tried to modify my diet to avoid refined carbohydrates. It hasn't altered my weight at all but thats not a big deal but it has meant that I havn't had sugar highs and lows. The way I've been thinking about the ir is that I have a really bad feed back loop for controlling my blood sugar so that I try and avoid anything that will raise my blood sugar and then lead to too much insuline and then eventually feeling dizzy. I have an oat cereal for breakfast because I was told that oats are a pretty slow release carb and I don't snack. I'm also careful to eat regularly (if I'm late with a meal I get dizzy). This had a reasonable effect on my symptoms. It helps when I drink plenty of water as well but I'm really bad at doing that. I'm also taking a whole mix of herbs and they've been great. They've improved my general symptoms (I ran out and got spots and more fuzz) and are having a positive effect on af (I'm clomid resistant and overstim on injections). I'm also doing yoga which has also been great but in a more general way.
Anyway as I said before you may find that you feel really well when pg. If it was me pg (I live in hope of #2!) I wouldn't low carb but I would definitly try and good carb (have you tried a low gi diet?)
Lots of luck
Amanda C

Bethany · 03-21-2003, 09:07 PM

Hi Amanda,

Thanks for your advice. I agree with you & I am doing "better" carb-ing as you call it

I include low-glycemic vegetables & fruits, & whole grain bread & occasionally brown rice or pasta. My RE actually said that although my insulin will never drop to normal even with low carb-ing, I should still do it while pg to avoid the major insulin spikes. If & when I stop Metformin (supposed to be stopping it next week) I will feel really nervous that if I eat anything "bad" it will spike my insulin & result in a m/c. What a way to live!!!

However, I may not end up needing to worry about all that for 9 months anyways b/c right now it looks like I will probably m/c. My beta only climbed from 123 to 192. I will find out for sure on Monday. This will be my 2nd m/c in 6 months

I HATE PCOS!!!!!

I was so glad to see that a thin cyster with IR has had a successful pg!!! You did have it when you were pg with her, right? It's hard not to lose hope b/c it seems, as we have said, that we have IR worse, & pg is even harder to achieve & sustain for thin cysters. I'm glad there is still hope.

Btw, when my Dr said to me "You cannot get fat" he didn't mean that I physically am not capable of getting fat (if only that were true!) - he meant "You cannot afford to ever get fat" b/c of my IR.

Also, you mentioned that you overstimulate on injections, have you tried a lower dose? I have a good friend who is doing IVF, the 1st time she tried they gave her OHSS & she was hospitalized for 10 days!! She stims really easily too! The 2nd time they were extra cautious, they brought the original 200 dose down to 100 & under-stimulated her (had to cancel the cycle). She will be trying again with 150 in a few months. I wonder if they could mess around with your dose & find one that works for you? Just an idea.

I was also wondering what the herbs are that you take, & the dosages? What positive effects have they had on you? Do you take Met & what dose, & did you take it while pg? That last one is my biggest dilemma.

Thanks again,
Elizabeth