Where should I go to get this help? (PCOS related)

[RoxMonster]

Poof

Thank you for all the advice and sharing your experiences.

[Patsy Baloney]

No advice, but solidarity on doctors telling you, "Just lose weight," and sending you on your way. Total shit experience, and no one deserves that. I hope you're able to find someone to help guide you better.

[sproctopus]

I am sorry you've had such a bad experience. These doctors aren't helpful. While a good diet cannot change fully what is happening hormonal, it can do a good bit to help.

Have you met with a reproductive endocrinologist? They often know nutrionists that can specialize in helping create plans for people with PCOS.

I wouldn't spend $1k on that program.

ETA: I suggested an RE rather than an endo because I had much better luck getting an RE to be more sensitive with better bedside manner. I was diagnosed at 17 with severe PCOS, but had issues with it since I was 12 (I'm 38 now). But maybe you'll have better luck than me with an endocrinologist.

[paddywagon]

I do not have PCOS, but have a friend who does. She sees an endocrinologist for testing and treatment. She said the endo has been the most helpful.

[lust2hart]

I'm sorry you've had to deal with such unsympathetic doctors. I don't know if this is appropriate for your situation, but I recently went to a natural medical doctor and he did a hormone check via blood test. My hormones came back in the normal ranges, but if they hadn't, he would have prescribed some supplements (not sure if that's exactly the right word) and diet changes to help bring them back into balance. This blood test was about $200, but I don't know how much the supplements would have been.

[RoxMonster]

Do you know if you can typically just call up an Endo to make an appointment or need a referral?

[yaga]

I'm currently waiting for my endocrinologist in her office. I started seeing her for low thyroid, but she also addresses my PCOS. I did metformin a few years ago to see if it would help me ovulate. It didn't, but I did lose weight pretty easily. But because it wasn't helping with the lack of ovulating, we decided to stop it. (My concern at the time was fertility; I was also seeing an RE but they referred me to her for the thyroid issues.)

I've gained 15 lbs since August and I'm very, very active. I'm really kind of at a loss as to what to do besides eating like 1200 calories a day and being super hungry and lightheaded (1200 cals are what most calculators tell me to eat if I want to lose weight because I'm so short.) I'll update after my appointment if she gives me any good advice! I am kind of hoping for metformin again just to see if it will help.

[litskispeciality]

I'm really sorry you're dealing with this. I see an Endo for thyroid, but they've never addressed period stuff, other than upping my Levo when I'm on BCP. Solidarity in doctors, FEMALE GYN's brushing you off saying your periods are normal, and you're just overweight.

@@@ If you could see a RE that's probably a better option. I hate to say lie and say you want to get pregnant, but that might make "you'll change your mind" doctor give you a referral, even though that's not the reason (nor should it be). I'd also find out if you can get your thyroid and other stuff checked, as that's often what I hear from my GYN "your periods are heavy because of your thyroid levels" ::checks recent bloodwork:: "Oh those are "normal", I guess it's not that. Just throw an IUD up there and God bless."

[sandandsea]

I’m sorry they’re being jerks. Have you tried an endocrinologist? They may be able to look into the weight and other hormone issues going on and better help with the weight loss and dietician. I have hypothyroidism and my endocrinologist has been the most supportive doctor I’ve ever had.

[yaga]

Jun 25, 2021 14:46:07 GMT -5 litskispeciality said:

I'm really sorry you're dealing with this. I see an Endo for thyroid, but they've never addressed period stuff, other than upping my Levo when I'm on BCP. Solidarity in doctors, FEMALE GYN's brushing you off saying your periods are normal, and you're just overweight.

If you could see a RE that's probably a better option. I hate to say lie and say you want to get pregnant, but that might make "you'll change your mind" doctor give you a referral, even though that's not the reason (not should it be). I'd also find out if you can get your thyroid and other stuff checked, as that's often what I hear from my GYN "your periods are heavy because of your thyroid levels" ::checks recent bloodwork:: "Oh those are "normal", I guess it's not that. Just throw an IUD up there and God bless."

I saw an RE before ever considering TTC. I was having a 25 day period and the NP at my GYN said I should see an RE to be better evaluated. I got a ton of tests and diagnoses from the RE. Once I did decide to TTC, I went straight to medicated/monitored cycles because they felt there was no point in us trying on our own.

[amberlyrose]

Jun 25, 2021 14:37:06 GMT -5 yaga said:

I'm currently waiting for my endocrinologist in her office. I started seeing her for low thyroid, but she also addresses my PCOS. I did metformin a few years ago to see if it would help me ovulate. It didn't, but I did lose weight pretty easily. But because it wasn't helping with the lack of ovulating, we decided to stop it. (My concern at the time was fertility; I was also seeing an RE but they referred me to her for the thyroid issues.)

I've gained 15 lbs since August and I'm very, very active. I'm really kind of at a loss as to what to do besides eating like 1200 calories a day and being super hungry and lightheaded (1200 cals are what most calculators tell me to eat if I want to lose weight because I'm so short.) I'll update after my appointment if she gives me any good advice! I am kind of hoping for metformin again just to see if it will help.

If you can swing it, I HIGHLY suggest finding your resting metabolic rate through a breathing test. I am short and overweight and every app told me to eat at 1200. My RESTING rate is around 1310, which means that is the minimum I need to eat to maintain basic body functions. I learned about it from a nutritionist's tiktok (lol) but went to a dexafit near me for the test. It was like $199 for that and the body scan, which was also helpful to see where my muscle gains/losses were.

I've heard some of these places are pushy about their special diets, but if you go in just for the scan info to take to your endo, I felt like it was good knowledge to have. 

[litskispeciality]

yaga , I hope that things worked out for you.

ETA: I'm not trying to make light of infertility. I only mentioned saying OP wants to TTC because they mentioned one doctor insisting they'll change their mind and want children. I've found that you have to say something to click with the doctor to get them to take you seriously. In no way should OP ever have to mention TTC to get a referral for an RE. I understand that even if you never have, or are finished having children, the RE can still help with GYN problems. 

I'm child free by choice and I was told here to try an RE when I had a fibroid removed, to make sure the way it was done was the best option. For a short time after the procedure the way it was done was good, so I didn't pursue the RE. I went back on BCP's last year as I was having 25 day, much heavier periods. BCP's only do so much for me. I still have long, heavy periods with a lot of spotting, but I'm afraid to try an IUD. I'd love an opinion from someone who cares. Even if I'm not TTC there's probably more issues my GYN is ignoring. The only thing I know is that I've had two ultrasounds within 4 years, by two different people, so someone is trying to check for cancer and endo, PCOS etc.

[mysteriouswife]

Jun 25, 2021 14:00:24 GMT -5 RoxMonster said:

Do you know if you can typically just call up an Endo to make an appointment or need a referral?

H sees his without a referral but he’s diabetic. I think it will depend on your insurance

[yaga]

Jun 25, 2021 15:24:20 GMT -5 amberlyrose said:

Jun 25, 2021 14:37:06 GMT -5 yaga said:

I'm currently waiting for my endocrinologist in her office. I started seeing her for low thyroid, but she also addresses my PCOS. I did metformin a few years ago to see if it would help me ovulate. It didn't, but I did lose weight pretty easily. But because it wasn't helping with the lack of ovulating, we decided to stop it. (My concern at the time was fertility; I was also seeing an RE but they referred me to her for the thyroid issues.)

I've gained 15 lbs since August and I'm very, very active. I'm really kind of at a loss as to what to do besides eating like 1200 calories a day and being super hungry and lightheaded (1200 cals are what most calculators tell me to eat if I want to lose weight because I'm so short.) I'll update after my appointment if she gives me any good advice! I am kind of hoping for metformin again just to see if it will help.

If you can swing it, I HIGHLY suggest finding your resting metabolic rate through a breathing test. I am short and overweight and every app told me to eat at 1200. My RESTING rate is around 1310, which means that is the minimum I need to eat to maintain basic body functions. I learned about it from a nutritionist's tiktok (lol) but went to a dexafit near me for the test. It was like $199 for that and the body scan, which was also helpful to see where my muscle gains/losses were.

I've heard some of these places are pushy about their special diets, but if you go in just for the scan info to take to your endo, I felt like it was good knowledge to have. 

My endo just ordered a ton of bloodwork and I have a follow up visit in 2 weeks to discuss the next steps, so we'll see. I'd love to do both of those, but I'm about to be a full-time unemployed student so it might have to wait.

[boiler717]

I’m sorry your providers are not more helpful. I would seek out an obesity med doctor.
I have PCOS and I’m having a lot of success losing weight on Ozempic. It’s indicated for Type 2 diabetes but my insurance covered it for me without having diabetes. It is the same medication (although lower dose) than the recently approved Wegovy for weight loss and similar to the weight loss drug Saxenda. Wegovy wasn’t approved when I started it but Ozempic is $25/m on my insurance vs. $400 for Saxenda (also semiglutide is better for weight loss than liraglutide [generic names for Ozempic/Wegovy and Saxenda]). I started it two months ago and I’m down 25 lbs. It’s been incredible. Wegovy is a higher dose but since I’m doing well on Ozempic I don’t see the need to spend more for it.
Also the PCOS diet template has good info but I haven’t purchased: renaissanceperiodization.com/pcos-diet-template

[leeloo]

There is a ton of misinformation floating around social media about PCOS from dieticians and nutritionists. Not everyone who has PCOS is insulin resistant. In fact a lot of women with PCOS aren't and they still struggle with weight. Eating to balance hormones is crap and most of these people prey on women who like you have been brushed off by Dr.'s. Nothing they say is magical or a fix.

I would go to an endocrinologist. Have some blood tests ran and see what they say. A1c, fasting glucose, Liver panel, LDL, thyroid, and antibody levels etc. I would also discuss whether you need to take Metformin. Unless you're trying to conceive or your lab levels indicate you struggle with insulin resistance it isn't really going to help. Diabetic protocol (metformin, low carbs, balancing carbs with fiber/protien) has been the treatment for decades, but research now shows that only helps insulin resistance.

[raleighnc]

Definitely see either a doctor who specializes in obesity (probably the best option for getting someone to listen to you) or an endocrinologist. Someone who will test you for insulin resistance and metabolic syndrome (I think about a third of women with PCOS have metabolic syndrome, but don't quote me on that). For insulin resistance, it's a three-hour test where you drink a high glucose drink and they check both your insulin and blood glucose levels. There are probably other tests they will do as well (definitely ask them to check your free T4 and TSH as subclinical or overt hypothyroidism may be linked in some way). Metformin may not be helping at all, or maybe you need a different med or a different dose. And regular GYNs seem to know very little about PCOS except that it can interfere with getting pregnant. There are so many hormones involved that can be normal or screwed up (and you don't even need to necessarily have cystic ovaries to have PCOS). Most of my hormones look perfectly normal except my testosterone is at the top of the normal-you-don't-have-a-tumor range. For most women with PCOS, it's better to treat the symptoms rather than try to achieve perfect hormonal balance. I take spironolactone for acne and hirsutism, but I don't have insulin resistance or metabolic syndrome, so metformin, etc. probably wouldn't help anything. And since I am not trying to get pregnant, they aren't worried about those hormones.

www.endocrineweb.com/professional/pcos/subclinical-hypothyroidism-women-pcos-needs-more-research

[RoxMonster]

Thanks for all the info. I will get set up with a PCP and maybe ask them for recs for an endocrinologist.

[Cappy]

I just wanted to say I'm so sorry. My OBGYN also dismissed similar concerns with a "do keto and you'll get skinny" and that was the last time I visited her practice. I decided I was better off with my male PCP who has good listening and empathy. I get your anger and you have every right to feel upset. It hurts to be dismissed and not listened to.

[boiler717]

Jun 25, 2021 17:08:22 GMT -5 leeloo said:

There is a ton of misinformation floating around social media about PCOS from dieticians and nutritionists. Not everyone who has PCOS is insulin resistant. In fact a lot of women with PCOS aren't and they still struggle with weight. Eating to balance hormones is crap and most of these people prey on women who like you have been brushed off by Dr.'s. Nothing they say is magical or a fix.

I would go to an endocrinologist. Have some blood tests ran and see what they say. A1c, fasting glucose, Liver panel, LDL, thyroid, and antibody levels etc. I would also discuss whether you need to take Metformin. Unless you're trying to conceive or your lab levels indicate you struggle with insulin resistance it isn't really going to help. Diabetic protocol (metformin, low carbs, balancing carbs with fiber/protien) has been the treatment for decades, but research now shows that only helps insulin resistance.

Fasting glucose is the last biomarker to change for insulin resistance, though. Postprandial insulin, postprandial glucose, and fasting insulin will change years before fasting glucose starts to change. Most providers do not check postprandial insulin levels to see the beginning of insulin resistance. Also, the GLP-1 agonists are diabetes medications but also have efficacy with respect to weight loss for patients without insulin resistance.

[cuadrado]

Jun 25, 2021 17:08:22 GMT -5 leeloo said:

There is a ton of misinformation floating around social media about PCOS from dieticians and nutritionists. Not everyone who has PCOS is insulin resistant. In fact a lot of women with PCOS aren't and they still struggle with weight. Eating to balance hormones is crap and most of these people prey on women who like you have been brushed off by Dr.'s. Nothing they say is magical or a fix.

I would go to an endocrinologist. Have some blood tests ran and see what they say. A1c, fasting glucose, Liver panel, LDL, thyroid, and antibody levels etc. I would also discuss whether you need to take Metformin. Unless you're trying to conceive or your lab levels indicate you struggle with insulin resistance it isn't really going to help. Diabetic protocol (metformin, low carbs, balancing carbs with fiber/protien) has been the treatment for decades, but research now shows that only helps insulin resistance.

A large majority (~70%) of people with PCOS have insulin resistance. This percentage also statistically greatly increases with BMI since elevated insulin levels typically cause weight gain. With a BMI >30% somewhere between 80-90+% of people have insulin resistance with PCOS. A1c and fasting glucose are typically not used to evaluate insulin resistance with PCOS since someone can have elevated insulin levels for 5-10+ years before it progresses into hyperglycemia. Most recently it's been seen in research that even those with PCOS at lower weights with normal insulin levels have some markers that show they're more likely to develop insulin resistance, which is why it's becoming more common to treat everyone with PCOS as though they already have insulin resistance.

Most large nutrition PCOS social media accounts are run by registered dietitians who are involved in PCOS advocacy in some form. Advocacy organizations are usually comprised of lead researchers with PCOS, so you're exposed to the latest research with PCOS and some even actually help with research. This doesn't mean they're spreading misinformation. On the other hand, a lot of physicians typically use the "evidenced-based guidelines for PCOS" (pretty much the main "formal" guidance for PCOS), and this document is widely criticized in the PCOS space as being outdated and lacking. In general, PCOS awareness and education is severely lacking in the medical community. This sadly ties back to the government and funding for women's health. It's like fighting tooth and nail to get congress to support any legislation related to PCOS.

[pugz]

Julie Duffy (foodpeacedietician) on instagram is a good follow, she has a podcast called Love Food Podcast.

Pcosbosyliberation is another good account to follow.

I would find a better doctor and find a health at every size registered dietician to explore ways to promote health. Dieting doesn’t work and can make things worse.

[krystee]

I have insulin-resistant PCOS, and I actually had weight loss surgery to try to reverse it. I lost 80 lbs and then gained 45 back in the pandemic. Recently, my PCP referred me to a weight loss center in the health system near me, and told me to ask them for a Wegovy prescription. Reading boiler’s post, I think I will ask for the other med first. I have not yet made my appointment, but plan to this week.

Not related to the food part but related to PCOS, I also have ridiculously heavy periods and she told me to get a Mirena IUD because PCOS can cause thickened lining, and IUDs prevent that lining from building up. I am praying I am one of the 50% or so of people whose periods stop!

[boiler717]

Jun 25, 2021 23:21:18 GMT -5 krystee said:

I have insulin-resistant PCOS, and I actually had weight loss surgery to try to reverse it. I lost 80 lbs and then gained 45 back in the pandemic. Recently, my PCP referred me to a weight loss center in the health system near me, and told me to ask them for a Wegovy prescription. Reading boiler’s post, I think I will ask for the other med first. I have not yet made my appointment, but plan to this week.

Not related to the food part but related to PCOS, I also have ridiculously heavy periods and she told me to get a Mirena IUD because PCOS can cause thickened lining, and IUDs prevent that lining from building up. I am praying I am one of the 50% or so of people whose periods stop!

I would try it!! My husband tried to get Ozempic but it was rejected because he hadn’t tried metformin first. He didn’t need to have diabetes but did need to have the claim history for metformin. Good luck!

[yaga]

Jun 25, 2021 23:21:18 GMT -5 krystee said:

I have insulin-resistant PCOS, and I actually had weight loss surgery to try to reverse it. I lost 80 lbs and then gained 45 back in the pandemic. Recently, my PCP referred me to a weight loss center in the health system near me, and told me to ask them for a Wegovy prescription. Reading boiler’s post, I think I will ask for the other med first. I have not yet made my appointment, but plan to this week.

Not related to the food part but related to PCOS, I also have ridiculously heavy periods and she told me to get a Mirena IUD because PCOS can cause thickened lining, and IUDs prevent that lining from building up. I am praying I am one of the 50% or so of people whose periods stop!

My old GYN, RE, and endocrinologist all recommended being on birth control (oral BCP or hormonal IUD) because of this. It was one of the reasons I was advised to skip TTC naturally since it's risky to have uncontrolled growth of the uterine lining. I had to have an endometrial biopsy back when I had my initial RE consult because they were concerned with that plus my 3 week plus period. (Everything ended up fine, but definitely helped me learn why being on the pill was so important for me.)

Another thing an endocrinologist will check is your androgen levels. I'm having those looked at just to see if some of my issues are related to elevated levels since that's common in PCOS.

[somersault72]

I'm so sorry. "Just lose weight" are 3 of the most frustrating words in the medical profession. I don't have PCOS but I am overweight (obese). DH and I both to go weight management doctors, they offer both surgical and non surgical options. I'm currently on a medication, Qsymia, DH takes Contrave. There are also dietitians in the office which we've seen. I don't know if something like that is an option or something you're even interested in, but just throwing that out there.

[tiptoetulips]

Another recommendation for a regular endocrinologist. Obgyn just don’t know enough about this stuff and it’s a super tricky one to diagnose and treat because it varies so much person to person.
I was anovulatory, gained 20lbs, had horrible acne when I went off BC. I suggested this to my gyn and she said I was too skinny and blew me off for a year. I was TTC but wanted to get to the root prior to going to an RE. I found a great endocrinologist and she was able to diagnose me. I will say that I took a super slow path towards finding the right dose of metformin. The standard is 2000mg and that’s way too much for me. I did 500mg increases at a time for several months. I needed 1000 to start and depending on my weight and other factors can be on anywhere from 500-1000 sometimes 750. If I start seeing the undesirable side effects I know I need my meds adjusted.
I also have a the Mirena and that helps as well.

[litskispeciality]

I don't want to get off track, but I'm jealous of those with Endo's who check more than thyroid. The first one I saw allowed your numbers to be just over 4 and ran a thyroid ultrasound once a year because I have nodugeles. This was at a hospital known for medical research. Finally changed, and this new(we) one is better, but he's all thyroid and very "if your thyroid numbers are in line then it's not your thyroid causing issues, something else is wrong and check with that doc." I mentioned the periods, the fibroids, acne, weight and tiredness (which is a bit better now that I'm on a higher dose), so it's not like they don't know what's going on. I've never been diagnosed with POCS, but have almost every symptom and always wonder if they should run tests?

Anyway good luck to those going for more testing. Keeping fighting!

[RoxMonster]

I tried using the HAES directory to search for physicians and dietitians in my area but none came up. However I did find a dietitian whose website/FB page and her posts about her philosophy seem on line with that framework. She is anti-diet for one. She didn’t state PCOS but said she has experience coming up with meal plans for diabetes and other diseases. You can do a free 10 minute call with her to see if it’s a good fit so I may give her a try.

[wanderingback]

Jun 26, 2021 15:16:09 GMT -5 litskispeciality said:

I don't want to get off track, but I'm jealous of those with Endo's who check more than thyroid. The first one I saw allowed your numbers to be just over 4 and ran a thyroid ultrasound once a year because I have nodugeles. This was at a hospital known for medical research. Finally changed, and this new(we) one is better, but he's all thyroid and very "if your thyroid numbers are in line then it's not your thyroid causing issues, something else is wrong and check with that doc." I mentioned the periods, the fibroids, acne, weight and tiredness (which is a bit better now that I'm on a higher dose), so it's not like they don't know what's going on. I've never been diagnosed with POCS, but have almost every symptom and always wonder if they should run tests?

Anyway good luck to those going for more testing. Keeping fighting!

Just as an FYI PCOS can be a purely clinical diagnosis, meaning you don’t have to run some blood tests. I typically follow the rotterdam criteria. Blood tests can certainly help, especially if someone doesn’t have clear signs of hyperandrogens or an US to see if there are cysts. But the vast majority of people I diagnose it’s based on the history.

Now after the diagnosis I do run some tests to look at insulin resistance, lipid panel, depression screen, etc to keep an eye on those things and come up with a full treatment plan based on the person’s goals and specific needs. So yeah your doctor should be able to help you.

OP, I hope you find someone that listens to you. Definitely seems like you need to find another doctor and a registered dietician. I know how frustrating it can be to bounce from person to person. If you’re up for it, I would try to write a short script ahead if time before you see your pcp. I would be upfront about your past experiences and what you’re looking for in regards to not being just told to reduce your calories. If they’re not an asshole they should listen to you and help you. Good luck.