Stuck without answers
March 2, 2017 11:51 AM   Subscribe

My wife has been having some health issues over the last few years, and the treatments (chiefly hormonal birth control and anti-depressants) keep interfering with her quality-of-life. We're not particularly impressed with the her medication is just swapped out when QOL issues come up, only for issues to come up again on the new medication, and then the process repeats. We're just really at a loss here. Details and an actual question inside.

All of her life, Mrs.Anonymous has had
  • possible gluten or FODMAP sensitivities
  • frequent diarrhea after eating, probably directly related to the food sensitivities
  • very irregular periods, leading to a recent PCOS diagnosis
In the last several years, she's had
  • Varying levels of sleepiness throughout the day, leading to a hypersomnolence diagnosis
  • Varying levels of memory loss and other mental processing issues (We have somber conversations where she'll tell me how smart she used to be when she took advanced math and college courses during high school)
  • A possible but hard-to-nail-down lactose sensitivity
  • a garlic "allergy", where it seems like she just doesn't digest it, leading to bad breath for days. That's rough for someone of Italian descent
  • A depression diagnosis (and related symptoms), no doubt related to all the stress involved with the above health concerns
  • Other side effects that always seem to be from the "rare" list on whatever medication she's on
Working with various doctors in the same office*, she's been on and off several different hormonal birth control medications, and has been on a few different anti-depressants. Her sex drive has dramatically disappeared (which causes her a lot of stress), her mood is more stable but not where she wishes it was, and all that happens is that her doctors change medications to try and juggle the side-effects.

Last night after a particularly bad course of sex she told me that she feels like she's being forced to pick between being healthy or being happy and intimate. She set up a meeting with her doctor to see about yet again changing birth control (being taken to manage PCOS symptoms), but she's incredibly frustrated by the wait and see approach that often ends with her having a minor breakdown. We're at a complete loss here.

So, MeFi, can we do anything different to take care of her health? Can we go to Mayo and have Dr. House figure it out in an hour (minus commercial breaks)? Is there, like, a health care manager we can get to help us with all the changing medications and side effects? Is she just stuck with all of this?

A big problem is knowing whether a new symptom is actually something new or just a terrible side effect. (Honestly, at times we feel like we don't even know why she's on the anti-depressants, since they seem to have a pretty high QOL cost) We desperately want answers for her. We don't know if all those symptoms are related or not, I just want to see her happy and healthy.

*Because she's under 26, her insurance is through her dad's employer. Said employer is large enough that they run their own clinic and insurance, so theoretically everything is convenient and in one place, but that doesn't seem to get us anything particularly special.
posted by anonymous to Health & Fitness (28 answers total) 5 users marked this as a favorite
Does she need to be on birth control? It sounds like you are young so probably not looking for a vasectomy, but maybe condoms for now?
posted by fingersandtoes at 12:07 PM on March 2, 2017

I am NOT A MEDICAL PROFESSIONAL of any kind, just a patient who's had to investigate my own fatigue issues a few times.
Three things stand out from what you've written as possible causes of the issues with alertness and memory: a nutritional deficiency of some sort due to malabsorption, a sleep disorder (sleep apnoea, in particular, should be considered especially if she's overweight from the PCOS), or insulin resistance due to the PCOS.

Malabsorption: I'm assuming she's been tested for all of the obvious nutritional deficiencies and also for coeliac, but it might be worth going through the tests with a fine-tooth comb in case there are some things that have been left out. Is she currently avoiding all the things that give her gut issues? Is she still suffering diarrhoea regularly? Because that would make it very difficult for her to get enough nutrients to feel healthy.

Sleep: The somnolence alone sounds like it should merit a sleep study if one hasn't been done.

Insulin resistance: how's her HbA1C? Has she ever been prescribed metformin?
posted by Acheman at 12:17 PM on March 2, 2017 [7 favorites]

I know what I sound like when I suggest this -- but it couldn't hurt to try a low carb, high fat diet. Women with PCOS do surprisingly, verifiably well on it. You can learn more about women's experiences on the reddit xxketo thread (for women on the ketogenic diet.) Here's a link to the PCOS discussions on that thread.

From personal experience, I can tell you that two of my autoimmune disorders have gone into remission (or been cured?) since I started eating keto a year and a half ago. (One of those autoimmune diseases made sex difficult -- getting my sex life back has been my biggest win since eating keto.) My specialist agrees that it was probably what cured by two autoimmune diseases. Let me say that another way "My doctor applauded my decision to eat keto, and believes it cured my autoimmune diseases, or at least sent them into remission."

It's easy to do keto as someone who is gluten free. It may be harder to go dairy free -- but people do it. It's also possible that she'll be better able to tolerate dairy while eating keto.

People report that it helps with energy, and with clarity in thinking. That all sounds too good to be true, but it makes sense when you consider the ways in which insulin is controlled when you're not eating carbs. No more energy ups and downs -- and insulin is all tied up in PCOS, too.

Anecdotally, a lot of people believe eating keto stabilizes your mood. I will say, for myself, carbs made me sad, and not only am I happy that I'm not depressed anymore, it's an actual pleasure to eat high fat.
posted by vitabellosi at 12:21 PM on March 2, 2017 [20 favorites]

You might look into whether she has highly unstable hormonal levels. This requires a series of tests taken in quick succession and then comparing them, rather than just one test that will almost certainly show nothing more than that her hormones are "in the normal range"

Have you considered if she is possibly getting hormones from other sources such as plastics, or soy?

Is there any way you can experiment to see what her ideal sleep cycle would look like? Most people can't because job/school. But there is plenty of variation from the adults-need-eight-hours-of-sleep requirement promulgated by the factories over a century ago. It may be that her schedule is so far from her natural one that she is suffering horribly from lack of sleep, which could also account for the memory and cognition issues. People are not designed to all sleep at the same time. They are designed to have different sleep cycles from other people around them. (Nursing mothers, for example have to wake up enough to nurse several times a night leading to needing longer sleep periods for most of them which of course they usually don't get.)

Your wife might need to sleep for seven hours every night and then take a three hour nap in the early afternoon, and failing to get that leads to not being fully awake part of the time. If she gets a vacation long enough to play with this it might be worth exploring. If you do experiment with this watch our for light sources and media keeping her up when she really needs to sleep - many people who need to sleep don't go to bed at 5 PM, they start watching TV because it is the kind of mindless thing they can do while too sleepy to do anything that takes concentration.
posted by Jane the Brown at 12:23 PM on March 2, 2017 [1 favorite]

Not going to offer any medical advice as I think you should leave that to actual doctors.

Yes, you can go to Mayo (or perhaps a local academic medical center) and get a full work-up. Often they call these 'executive physicals' and you have to pay out of pocket for them. The only thing you'd be hoping for there is a true- House style diagnosis that single-handedly explains all her issues in one neat treatable cause. Otherwise, you'd be back to square one when they say "well, maybe try X drug for Y weeks and get back to us".

I'm not sure about your financial situation, but it might be worth looking up a concierge physician near you. Again, you will pay out of pocket for this, but you will be able to sit down with your doctor for multiple hours and actually explain in depth what her problems are, as well as get their undivided attention as you navigate her issues.
posted by thewumpusisdead at 12:32 PM on March 2, 2017

Has your wife tried an elimination diet? She sounds very similar to me a year ago, and I improved my overall health - and mood - drastically after cutting out the biggest offenders (eggs and dairy, for me). It isn't exactly fun, but if you already suspect food intolerances it would probably be a good idea to rule them out as contributing to the overall issues, especially since it is a fairly easy process you can do at home.
posted by daikaisho at 12:39 PM on March 2, 2017 [2 favorites]

Sleep study, now. Seriously.
posted by blue suede stockings at 1:00 PM on March 2, 2017

Has she not seen an endocrinologist who specializes in PCOS? You mention there've been thyroid tests, but I don't see other mention of a consult with an endocrinologist specifically. AACE can help you find local specialists, and you can specify your interest in PCOS (in the "endocrine focus" drop-down menu).
posted by late afternoon dreaming hotel at 1:06 PM on March 2, 2017 [3 favorites]

IANAD. Research, some people report benefit from taking a combination of L-Tyrosine in the AM, and 5-HTP in the PM.

Can confirm L-Glutamine before sleep helps you stay asleep, and I have tried EVERYTHING for sleep issues prior.

I'm into Pine Bark lately for general inflammation and wellbeing, I get it powdered from a reliable source. I'm getting old and back to exercising again and it's so much better than past exerperiences prior to regularly taking this supplement.

YMMV. Just some things to research and think about.
posted by jbenben at 1:06 PM on March 2, 2017 [1 favorite]

Has she had an upper and lower GI study done? So, a colonoscopy and EGD, with biopsies?
posted by pecanpies at 1:13 PM on March 2, 2017 [1 favorite]

The sex drive stuff can absolutely be caused by both the pill and anti-depressants. I've only ever been on the former (several different brands over a decade) but it absolutely killed my sex drive, made sex dry and uncomfortable, and gave me dysthymia as well, which only alleviated about a year after I stopped it. I do get cyclical mood impacts now but counseling and closely charting my symptoms, as well as taking a calcium and magnesium supplement late in my cycle, has made a major difference.

YMMV, of course.
posted by PhoBWanKenobi at 1:23 PM on March 2, 2017 [1 favorite]

Also, does this post about endometriosis ring any bells for her? It can cause stomach problems, irregular periods, mood swings, and painful sex.
posted by PhoBWanKenobi at 1:28 PM on March 2, 2017 [2 favorites]

Unless we're supposed to get more than a participation certificate from a sleep study? As I recall they didn't really suggest any treatment, just a diagnosis.

Did this include a next-day nap study?
posted by blue suede stockings at 1:31 PM on March 2, 2017

So if she had only a sleep study and not an MSLT then her work up was not sufficient to diagnose hypersomnia. That's coming from 4+ years as a sleep medicine PA.

Much of what you are describing has symptom overlap with celiac. You mentioned something about gluten in your post but has she actually, truly been worked up with serum anti tTG and/or biopsy or HLA typing? If not I'd start there because this sounds suspiciously like an auto-immune issue.
posted by teamnap at 1:40 PM on March 2, 2017 [1 favorite]

Not a doctor, but your wife's age, fatigue and cognitive declines make me think MS (then again, I tend to see that everywhere because my wife got her dx in 2011). Multiple sclerosis tends to be co-morbid with other autoimmune disorders and is more likely to occur in patients with a family history of autoimmune disorders, including PCOS, diabetes, and metabolic syndrome. Has she had a plantar reflex or Babinski sign check? An abnormal response may indicate nerve damage.
posted by infinitewindow at 2:01 PM on March 2, 2017 [1 favorite]

With this much stuff going on with your wife, I think it's essential to keep detailed notes of what symptoms she's experiencing, what treatment has been tried, and what the results from that treatment are. Definitely don't expect doctors to do that for you. They are unlikely to be keeping track as closely as you need.

I'd try a daily food/mood/meds log, where she writes down what she ate for each meal and how she felt afterwards along with any medications she took that day. She can probably do this just once a day before bed, assuming she can remember what her mood was like many hours ago. Then, every few weeks or once a month or so, look over the log and see if you can notice any patterns. If she has started a new treatment, this is a good way to see if it's working.

Also, if you want to be sure about what's a new symptom vs. a new side effect, only try one treatment at a time. Do that treatment for 3-4 weeks, keeping detailed notes, and then at the end of those 3-4 weeks evaluate whether you want to continue or try something else. Don't try to treat two or more things at once. Don't do less than 3 weeks per treatment (unless it's obvious the treatment itself is harmful).

Don't rule out the possibility that a doctor just doesn't know what the problem is. Unfortunately, it's very rare that they will tell you that. In my experience, doctors are terrified to admit they don't know. Instead, what they'll do is prescribe their best-guess medication that they think might help, and just tell you to try it and see what happens. They do this because it seems better on the surface: patient walks away with something to try, doctor feels like they helped, and hey, it might work. But the doctor doesn't have to live with the side effects, or the hopelessness that comes from trying yet another medication and having the "cure" be worse than the ailment. So I'd be skeptical of any doctor who isn't able to explain why they're trying a specific course of action, and what their plan is if it doesn't work.

Instead, I'd look for a doctor whose ideas and explanations resonate with your wife, and who can explain more than one or two of the symptoms with a single diagnosis. Again, in my experience, either a doctor knows how to help someone with your condition, or they don't. If they do, it'll be obvious, what they say will immediately make sense, and they will probably give you useful advice within the first visit. If they don't know, you probably don't want to be their guinea pig. Keeping looking for another doctor, frustrating though it may be. They are not all the same.

From what you've described, I would absolutely start with diet. The majority of the symptoms you listed are diet-related, and you also say she's been struggling with that all her life. Find a doctor who specializes in treating food sensitivities and is well-reviewed by other patients (and if you don't find the first doctor to be helpful, keep looking until you find one who is). Ask this doctor for a full panel of food allergy tests. Definitely test for celiac, gluten, lactose, and garlic. (Keep in mind that while there are common allergens, it's possible to develop an allergy to anything at any time in your life, so the culprit may be something less obvious.) Following the results of the tests, try an elimination diet for 3-4 weeks to see if it helps. If it doesn't, eliminate something else and try again. The keto diet that vitabellosi suggested is also a very reasonable thing to try, as it's basically a sugar-elimination diet and directly helps regulate insulin and indirectly many other hormones.

And yeah, I'd strongly consider tapering off the antidepressants, as they seem to be hurting your wife more than helping her. This is its own can of worms and probably takes 4-8 weeks alone, before you can start evaluating any other treatment plan, but it may be worth it to her. If nothing else, it will make the results of any other treatments she tries more obvious. Given the symptoms you listed, it sounds like depression is a secondary symptom whereas diet is more primary and she's been dealing with diet issues much longer.

Anyway, I've written a novel, but I hope some of this is helpful. Try other doctors, take notes, be your own health care manager. (Though if you have the money for Mayo Clinic, I'd totally go for that too.) Good luck.
posted by danceswithlight at 2:20 PM on March 2, 2017 [7 favorites]

I also came here to suggest ketogenic diet as it's one of the best ways to control and stabilize PCOS. Many also report it helping tremendously with mental disorders.

In terms of her libido, I think that the anti-depressants are the most suspect culprit.
posted by quince at 2:57 PM on March 2, 2017 [2 favorites]

danceswithlight has come up with a good roadmap. Just wanted to add that you want to make sure that they test her Vitamin B12 levels, if they have not done so recently. (It is not always checked in the standard bloodwork that is done, particularly since she is pretty young, but pernicious anemia can cause some of the symptoms you have listed.)
posted by gudrun at 3:15 PM on March 2, 2017 [1 favorite]

I'm not sure about your financial situation, but it might be worth looking up a concierge physician near you. Again, you will pay out of pocket for this, but you will be able to sit down with your doctor for multiple hours and actually explain in depth what her problems are, as well as get their undivided attention as you navigate her issues.

This was going to be my suggestion, assuming your budget will allow it. There are a variety of versions of "concierge" practices, depending on where you live and how deep your pockets are, and of course they vary in quality, but when it works right you not only get a deeply engaged doctor, you also get a much faster turn-around time for trying to trouble shoot these kinds of complex issues. In other words, it solves the frustrating issue of having 15 minute appointments three months apart where all that happens is you explain everything again and maybe get a new prescription, or the equally frustrating issue of having separate conversations with a primary care doctor and a specialist where no information is communicated between them and you get no real attention from either.

I also agree with people saying that this sounds suspiciously like an autoimmune problem (possibly with a side dose of endometriosis, for good measure), which are notoriously poorly understood by many doctors and are frequently misdiagnosed or ignored in women.

Good luck! Complex medical issues are no fun, and I hope that you are able to find a solution. It is awesome that you are supporting her in this.
posted by Dip Flash at 4:55 PM on March 2, 2017 [1 favorite]

I am not a doctor, but I would discuss the following ideas with her doctor:

- elimination diet to figure out exactly which foods she is sensitive to - it might be worth consulting with a registered dietician to figure out a good plan
- switching to a form of birth control that is likely to have fewer side effects (perhaps a mirena iud, if she's a good candidate for it and is interested)
- tapering off antidepressants or switching to something that is less likely to have sexual side effects (or less likely to have whatever side effects are a problem for her). A psychiatrist is more likely to able to assist with this than a primary care doctor.
posted by insectosaurus at 5:02 PM on March 2, 2017

possible gluten or FODMAP sensitivities
frequent diarrhea after eating, probably directly related to the food sensitivities
very irregular periods, leading to a recent PCOS diagnosis

I would say there's a chance all this began with an H. pylori infection.

Here's how I think the chain of cause and effect could work:

H. pylori infection causes over-production of stomach acid, which in combination with the bacterium causes stomach pain, digestive problems, and finally ulcers; in order to limit the production of stomach acid, her brain ramps up the activity of the HPA axis, with accompanying anxiety and increased respiration, which in turn reduces the amount of CO2 in the blood, because that CO2 is necessary for acid production; however, the increased adrenal activity aspect of an upregulated HPA axis produces higher blood levels of the androgens associated with adrenal activity; those androgens, in turn, cause her ovaries to develop a thicker outer layer of collagen (such as the the testes have even more of); that layer of collagen makes it harder for her eggs to break out of the ovary to begin their trip down the Fallopian tubes, and the result of that difficulty is ultimately a polycystic ovary.

A novel association between polycystic ovary syndrome and Helicobacter pylori.

I personally think those unwonted cysts on the ovary can attract the attention of the immune system, and that the result can be a chronic, lower intensity version of NMDA receptor disease.

Lack of stomach acid promotes food sensitivities, because the acid denatures proteins, and that makes them less visible to the immune system.

I think there's a simple and non-invasive breath test for H. pylori, and that's where I would start.
posted by jamjam at 8:01 PM on March 2, 2017 [4 favorites]

First off, this sounds hard and super frustrating for both of you.

Is she on the birth control just to regulate her periods, or are there other symptoms she's using it for? Would a Mirena IUD be an option? That might eliminate her periods entirely or make them light enough that the irregularity isn't such an issue.

For the GI issues, I had something similar for a while, although I didn't have the other symptoms she describes, so take this with the necessary hunk of salt. I eventually went to a GI doctor and they said it was irritable bowel (aka we have no idea) and prescribed a some off-label drugs (nortriptalyne + fiber) that mostly controls things. I'm guessing that you've already been to a GI doc/tried something similar, but just in case...
posted by matildatakesovertheworld at 8:45 PM on March 2, 2017 [1 favorite]

Some of the symptoms you described, including the malabsorption issue and the depression made me think that she may have MTHFR, which is a genetic mutation that basically means you don't metabolize certain things well, B vitamins being a main concern. This can lead to depression, fatigue, etc. I don't remember off the top of my head but it may be linked to PCOS as well (I have the MTHFR mutation but I don't have PCOS so I would have glossed over that info). It is easily detected by your GP via blood test, and can be handled with good nutrition and good quality supplements, usually.

I am in some Keto diet FB groups and I can tell you that I've read many many testimonies from women there who felt that their PCOS symptoms were greatly reduced by following that way of eating, so perhaps that's something she can explore.

Feel free to pm me with any questions.
posted by vignettist at 9:42 PM on March 2, 2017

+1 look into celiac disease. I know someone who had the diarrhea, fatigue, missed periods, and fibroids. She is much better after eliminating all gluten for quite awhile (like really all possible traces of gluten; a few drops of the wrong soy sauce brings it all back for 3+ days).
posted by salvia at 10:54 PM on March 2, 2017

I've had a couple of Mrs. Advil's issues. The extensive testing and referrals described above are not all (easily) available in my health care system, so I've had to go with fairly minimalist care. Repeating lots from above, but here's how it's played out for me, YMMV:

- IBS: A FODMAPs elimination diet helped me ID triggers; this knowledge helps me manage it satisfactorily.

- PCOS: mine isn't typical, didn't have the irregularity or some other common symptoms. Not a BCP candidate (stroke risk, though I wouldn't go near them [ever] again anyway, because I also experienced hellacious side effects), so I just go with pain management (NSAIDs) along with ultrasounds now and then to check on how things are going. That was my GP's solution, and it's working for me, for now, but a referral to an endocrinologist or gynecologist would be ideal, though, please try that! (2nd looking into lower carb diets, many are helped by them.)

- Depression/anxiety stuff: YMMV so much with this... I don't use SSRIs, and won't (had unwanted side effects affecting QOL). I manage using cardio + talking to friends. (There is a good amount of evidence behind the cardio for mild to moderate depression, helps with mood and energy, not so much making sense of things, but ime - very much ime - that alone can lift a veil enough to start to work on solutions etc. May also help with insulin if that's an issue.)

- Sleep: have had probs with this, but my issues are probably not your spouse's issues. A sleep study makes sense, if it can be done.

- But daytime fatigue, I've had a couple of times; this was corrected after deficiencies in vitamin D and iron were identified (at different times). NB, my serum ferritin was technically in the normal range, which is something like 30-400. Mine was 38. One doctor was happy with that; another thought I should try to get to 80, at least. (Still working on this, it can take a while.)

NB also, some digestive conditions complicate absorption of micronutrients. (I eat a ton of meat and somehow was not actually getting the iron from it, for eg.) In an ideal world where testing for anything is possible, getting a full workup (and testing for celiac, probably, in case it's that and not IBS) would be a good idea, to catch iron, the B12, and other possible vitamin and mineral deficiencies (which can so easily play into the sleep and mood issues).

This kind of puzzle is not fun to work out, and if you don't want to go the drug route, it takes a lot of trial and error, and a GP who's on your side (willing to order tests if necessary and refer out instead of going with standard treatment (BCP and SSRIs). Also, some self-education, unfortunately. (My old GP knew very little about current research on managing IBS.)
posted by cotton dress sock at 11:00 PM on March 2, 2017

How's her Vitamin D level? I have been diagnosed with PCOS and Insulin Resistance. While I dont know if the two are connected, I felt like a big stupid pile of shit for a long time. Brain fog, nodding off at my desk, heavy 2 hour naps after work THEN going to bed early, feeling like a sloth...all of it. My endocrinologist thought to do a Vitamin panel (grandmother had chronically low B12 so we were checking that out as a possibility for me) and found that while the low end of normal for Vitamin D was 35, mine was 13. Outrageous.

He told me to get some OTC Vitamin D supplements and take them every day. And OMG I could tell a HUGE difference! I felt better and more awake than ever! I am lactose intolerant to milk (but not cheese) and between not getting much Vit D from milk and apparently my body just not able to hang on to it I was in a constant state of deprivation. Adding at least 10,000 IU a day of Vitamin D along with a low carb/high protein diet for the PCOS and I felt so much better!

Vitamin D may not cure everything, but I'd try taking daily supplements (for me it's better than the 1 giant dose a week). Right now I take about 20,000 IU daily (I hate the short winter days!) and I can tell if I forget to take it for several days. Vitamin D is excreted in the urine so unless you have kidney problems or take an entire bottle at once you aren't likely to overdose yourself on it (the excess just gets peed out).

As always, check with her doctor, but there's no real reason to wait for a blood test before taking some extra Vitamin D every day. She should be able to tell after a few days of big doses if she feels better.
posted by MultiFaceted at 10:28 AM on March 3, 2017

I don't have time to read through everything but:
- Reproductive endocrinologist for the PCOS
- Psychiatrist for the depression
- Internal medicine doc for anything else

Keep log of symptoms. Don't stop meds without talking to a doc. Keep working at it!
posted by treehorn+bunny at 12:38 PM on March 3, 2017

Bile acid diarrhea is underdiagnosed, especially in the US. This is worsened by dietary fat; if she tries the keto diet and finds it makes things worse, or if she already knows she has bad reactions to high-fat, low-lactose dairy products like cheddar cheese, this might be worth looking into.
posted by yarntheory at 8:28 PM on March 3, 2017

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