At my wit's end with 2 year long amenorrhea


#1

Hey everyone,

I’m new to the forums, but have been doing keto for 2 years now. I have never cheated, which is not an attempt to gloat, but meant as context. My question is for the ladies, or for any practitioners who might be on this site:

Did anyone else experience total amenorrhea shortly after beginning a ketogenic diet?
If so, have you figured out why, and/or how to regain your menstruation/ovulation?

Context: I’m 27, 5 foot 2 inches, 130 lbs, 22-25 % body fat. I’m fully gluten free, mostly dairy free, and eat all wild caught, grass fed, etc. I also supplement with about 30 different things, including adaptogens, vitamins and minerals, inositol, myoinositol, vitex, phosphatidylserine, etc. 2 yrs ago, I was following a paleo diet, but began Hepatitis C treatment, and to my surprise, was told I had high blood sugar. So I looked into keto, started keto, and then 2 months later, lost my period. I used to have ovulation pain every month, so I know that I was not anovulatory when I was having a period. I have never been on birth control, and am not sexually active. Anyway, I then went to an endo and got a PCOS diagnosis due to extreeeemely high testosterone, ovarian cysts, and amenorrhea. My blood glucose testing during that time told me that I am insulin resistant, as well, because despite eating strict keto, my blood sugar never went below 100. At the time, I was about 160 lbs. I did not lose any weight doing keto. My thyroid hormone conversion began shutting down about 5 months after beginning keto; by now I was taking metformin (2,000 mg daily) for the PCOS, but had severe insomnia, constipation, and muscle weakness. I KC and KO, though. I saw a number of practitioners who refused to do a full thyroid panel until I found one who would, and she prescribed me Armour thyroid for my low T3 and slightly elevated rT3. My testosterone was still super high, having only gone down about 30 points with the metformin. My sex hormone binding globulin was also super high, which is atypical in PCOS. A few months later, I began intermittent fasting. Finally, I began losing weight. Within 3 months of IF and taking Armour thyroid, (a year after beginning keto), I had lost 30 lbs., and was starting to feel normal again. However, my period was still absent. I then had a salivary hormone panel done, which revealed chronically elevated cortisol, chronically elevated melatonin, and floor-level estradiol (2.9 pmol/l). However, my testosterone was finally in the normal range. My estrone was high, in the 5th quintile of the range, but considered “normal;” my estriol, however, was way out of range…SUPER high…50 pmol/l higher than the top of the range. Also strange was that my progesterone was super high, as well. In essence, at 26, I was diagnosed with early menopause.
This is super weird because prior to beginning keto, I had had a normal period. 3-5 days every 28 day cycle.

I’m at my wit’s end because no one I’ve ever spoken to has experienced the same, and none of my practitioners know what to say except: birth control, or Provera. Neither is a solution.

I even went to the 2nd annual conference on nutritional ketosis and metabolic therapeutics last weekend in Tampa and asked my question during the open panel, but was told by the 3 female researchers that that was “strange,” and that that “shouldn’t happen.”

Given that I am insulin resistant, I am scared to try carb-ups. My fear is paralyzing. Again, I’m at my wit’s end though.
If anyone has any ideas or experience to share, I would greatly appreciate it.


(Michelle) #2

Hi - I’m sorry, I have no words of wisdom. I came across this other keto podcast, where she lost her period for 8 years. It may be worth a try to listen to some of her stories. (Keto Diet podcast with Leanne Vogel). Keto did help her get her period back, but she did have to carb up on some days.

Also, I heard about this clinic in Houston (not sure what part of the world you are in), but they work with folks healing them through food: https://www.alimillerrd.com/. I’m sure there are other wellness centers across the world that maybe they could recommend that also believe in keto and that way of life. Ali Miller also had amenorrhea for 2 years.

Good luck!!! I hope you find answers.


#3

Thank you, Michelle. Yes, I found Leanne Vogel 2 yrs ago, but she was in the opposite boat. Keto fixed the amenorrhea that began for her 8 years prior. I recently sent her a message begging her to feature/answer my question on her podcast regarding carb-ups, or “protein-ups,” her other method, for insulin resistant people. I seem to be stuck between a rock and a hard place, whereby the treatment for PCOS is the cause of my secondary amenorrhea, euthyroid sick syndrome, (i.e., low t3 syndrome), and HPA axis dysregulation, (i.e., chronically high cortisol and messed up circadian rhythm)…and vice versa, (i.e., the treatment for the amenorrhea, thyroid, and HPA axis is the cause of PCOS: increased insulin).

Who is Ali Miller?

Thank you again!!


(Michelle) #4

Ali Miller runs workshops and classes for people to heal them through food (she has a podcast too, but I don’t listen to that one - naturally nourished or something??) But, she has this clinic in houston - alimillerrd.com. I think you can try and call her to see if she has any advice for your situation, or any specialist you may be able to see.

I heard about her on this podcast - her whole story is here – The Ketovangelist Podcast with Brian Williamson - Episode 70

Brian is someone that uses keto to treat epilepsy (in his kid I believe), but he’s VERY responsive with his emails. Maybe worth shooting him the email too about your story and see if he would feature it.


#5

I listen to his podcast frequently but must have missed this episode - thanks! I’ll try your suggestions.


(Erin Macfarland ) #6

I did experience amenorrhea after started starting keto in the beginning of 2015, but mine was due to the low levels of body fat and high level of exercise and not fueling my body sufficiently. I did not have a period for 18 months, then it returned when I went off keto and gained about ten pounds. I went back on keto last September and ended up losing a bit of the weight I gained back despite eating much more than I had previously and exercising less. Now it’s been two months since I’ve had a cycle and my body fat is low again. It sounds like your BF is in a healthy range though. I am guessing your missing period is closely tied to your former PCOS and insulin resistance. You mentioned low t3 I would suggest you’d look at this new book, The Paleo Thyroid Solution which has the most detailed info on thyroid and women I have ever found. She discusses being on Armour (which I am currently on also) but switched to T3 only and saw great improvements in her symptoms. I am hoping to try this as well since I feel the Armour isn’t making me feel optimal. Are you trying to conceive?


#7

I am not sexually active, so no, not trying to conceive atm, but my #1 dream is to conceive someday. More importantly right now is that estradiol levels are so important to bone density and bone health in general, and as I already have numerous issues with various joints, (scoliosis, kyphosis, TMJ, jaw arthritis with bony spurs), and as my family members all have arthritis, osteoarthritis, and/or osteoporosis, I want to be as preventative/protective as possible. Estradiol is also critical for mood, sleep, skin, hair, and nail health, libido, and a host of other things.

Anyway, I recently listened to a podcast which discussed a scientific study that showed that body fat percentage, contrary to popular belief, is more or less negligible in secondary amenorrhea. In other words, the “female athlete triad,” which is theoretically what you’ve experienced, is more like a “female athlete duo,” whereby caloric restriction and extreme exercise together, alone, can cause the same condition. Perhaps I need to wait a bit longer without exercising, and continue reverse dieting, (steadily increasing calories), before I can expect to see a hormonal rebalancing. Thanks for your insight; I appreciate it!

At this point, I highly doubt that my amenorrhea has anything, whatsoever, to do with my PCOS/insulin resistance, for a variety of reasons…I think I listed them above without prefacing them in that way, though, (e.g., high dose metformin, keto, daily intermittent fasting, supplementation with insulin sensitizing and/or glycemic-response-blunting herbs/minerals/etc.). Also, my fasting insulin was tested at 2.3, which is a whole half lower than what is considered “excellent,” (i.e., “5”). Forgive me, but I forget the unit of measurement.


Anybody else's jaw clicking or popping late into intermittent fast?
(Erin Macfarland ) #8

Just wondered if the PCOS had some residual effects…definitely worth looking into the tweaking of the thyroid!


(Meeping up the Science!) #9

Any thyroid antibodies?


#10

Nope


(Jfs) #11

Did you find a solution? Im in a very similar boat atm! :pray:t3:


#12

I haven’t yet. It’s been almost 3 years now :frowning: Sorry to hear that you’re in a similar boat.


(Meeping up the Science!) #13

I have either periods that lasts months or months of amenorrhea. In my case, they determined it was caused by Celiac. Whenever I have gluten again, either accidental or otherwise, it’s one of the first things that goes awry. Celiac also triggers my arthritis badly, and it manifests as joint pain more than anything.

Of course, no idea what it is in your case. I do know what it’s like to have one’s body acting oddly without a clue as to what is causing it. I hope you are able to figure out the impetus for it some day.


(Leeanne Denton) #14

I had always had heavy periods, but after going keto they got even worse (often I’d be on for 3-4 weeks a month, and during that time i could be having to change the super tampons after 2 hours). In the end I got sick of it, and went to the drs. I ended up having the coil fitted, which resulted in my periods turning in to spotting every day, along with what a iwould presume a ;normal’ period is for a week or so a month. After 6 months, my gyno said that its clearly not had the desired result, so offered me a hysterecomy, which i jumped at. (I don’t want kids, and had been trying to get one since i was 16, always refused by drs as ’ i would change my mind and want kids one day’ [Dont even get more started on that one lol]. Had the surgery done last May, best thing I’ve ever done, and looking back I really dont know how i coped with it all. (for example, on bad days id be taking painkillers every 2 hours)


#15

I figured it out! Got my period for the first time in nearly 3 years two days ago!!!
Ahhhhhh!!!

It was protein. I wasn’t eating enough protein. I’m only 5’2" and mostly sedentary, but apparently 60 grams/day wasn’t enough for my system. I’ve been eating 90+ grams per day and boom, about 30 days later I get a period!


(Dashiell Bark Huss) #17

I’m glad you figured this out. I’m having a similar issue. It’s super mysterious. I ended up going off keto after 6 years to see if it will fix it.

The first 4.5 years of keto were fine. But I started getting irregular periods after I got stricter with keto. But I also made a lot of other changes so it’s hard to know the cause.

Likewise I have slowly made changes to each possible cause. So though it seems I’m ovulating on time, I’m not sure if it was from going off keto or another change I made (quitting stevia, eating more, gaining weight, managing stress, upping iron intake).

I ate a higher protein diet so I don’t think protein would have been the issue for me.


(Amy) #18

I also lost my period on keto, until I started following Dr. Mindy Pelz protocol.


(Rebecca 🌸 Frankenfluffy) #19

I recall Health Coach Kait (she’s carnivore) on YouTube covering her own experience with this, and Leanne Vogel’s Healthful Pursuit, too. I gather both have experienced amenorrhoea in the past (I think keto helped them sort it out, from what I remember). Might be worth a look.


#20

Giving another update since there have been a few replies since my last update. I got my period back after 3 years on keto and correspondingly, no period whatsoever, (a consistent profile of normal progesterone, low estradiol, (i.e., progesterone-dominance), flatlined leptin, very high sex hormone binding globulin and high testosterone/insulin-resistant type PCOS despite NO outward symptoms like hirsutism, cystic acne, midline obesity, acanthosis nigricans). Quite the paradox, as many doctors confirmed. Anyhow, I remained on keto but quit intermittent fasting and began carnivore. I did carnivore for 30 days. I got my period back on Feb. 3rd, 2018, exactly 30 days after beginning carnivore. I stopped being carnivore after that, but stayed keto. It has been normal, recurring every 28-29 days, ever since.


(Katie) #21

That is awesome, thank you for the update!

I did not realize that your post was so old, I was going to suggest that you check out the Armstrong Sisters on their website and YouTube channel. A few months ago they started their ‘Healing Hypothalamic Amenorrhea journey’. This might be controversial here, given that they have transitioned from ketogenic carnivore OMAD style to incorporating carbohydrates, but they went about it very smartly. Even though your menstruation
has returned, you might still be interested. They are documenting it on YouTube.