cis woman wanting to get hormones assessed
November 18, 2020 7:00 AM   Subscribe

I'm an apparently 40 year old (time.. how confusing you are) AFAB cis woman in the US. I have been having a lot of hair loss for the last 5 years, but.. now getting to disturbing level of it.. although truly that symptom is the least worrying of them all... low energy (but this is like..always so who.t.f. knows) that's worse lately.. and recently really significant memory changes.

I've struggled with concentration and what not for a long time, but lately it is markedly worse and where as for the last four years I seem to regularly write "they're" where I mean "their" and "its" when I mean "it's", in the last three to four months it's more like a sharp increase in the number of times i walk into a room and have no idea why i'm there, and.. etc - hope ya'll can trust me on the "etc." It's just .. all sorts of tiny things, for example, in the previous sentence fragment where I have "the last four years" I initially wrote "the 'next' four .." and then had to delete that and write "last." No, this is not a major thing. I know.. but there's a lot of minor things which combined feel very worrying and significantly different.

I have no idea if this has anything to do with my hormone levels. I am not attached to this hypothesis, but I'd like to rule it out. My question is this: I am weary of doctors and have recently had some medical adventures that have made me very worn out just at the thought of finding a new one. I don't particularly care for the feelings of rage and impotence and frustration, nor the time-wasting, that happen when I go to a bunch of them who don't listen in a row and then give up in exhaustion.

I figure that now in the era of tele-health my options are perhaps less geo-restricted than they used to be anyway. I'm very fortunate to have good insurance right now that would cover most providers regardless of location. It is worth some additional cost to have this not be another invalidating time wasting medical experience. I want to find a gyn or.. someone of whatever specialty .. who will be willing to order labs for me at various times to see what's happening hormone-wise. I'm willing to pretend I want to get pregnant if I have to, but I suppose it would be nicer to be able to be honest.

If anyone has a specific recommendation and is wiling to say hello here, perhaps I could memail you if you'd rather not share in the answers? Or, broad ideas about how I go about finding such a provider efficiently. Have you conducted a similar search? how did it go, what did you learn? I suppose, ideally, in case this is the problem, it would be cool if they also where someone who writes for HRT, but this is not required. I really do get that this could be MANY other things than a hormone thing, but this question is just about researching the hormone-thing-possibility, not what else it could be.

many thanks in advance for any insight and for reading to the end of this : )
posted by anonymous to Health & Fitness (22 answers total) 7 users marked this as a favorite
Hair loss, memory issues and low energy are all symptoms of an underactive thyroid - easy to fix and simple bloodwork to diagnose. That said, the threshold at which people treat thyroid disorders has been shifting lower so if your tests come back borderline (which given how severe your symptoms sound) hopefully you find someone who is still willing to treat if this is indeed what is wrong. So also - yeah a hormone but not necessarily estrogen/progesterone but I am not a doctor.

I've used a couple doctors in recent past (have had thyroid issues for many years) and would suggest looking for someone younger or who is an osteopath. Can always search a doctor to try to get a handle on their approach. Good luck!
posted by leslies at 7:09 AM on November 18, 2020 [8 favorites]

I don't have personal experience with this doctor but he is local to me and he specializes in this treatment.
posted by xo at 7:22 AM on November 18, 2020

Yes, these symptoms coincide with hypothyroidism. The magic words for me to get my diagnosis via a blood panel were, "Here is a list of symptoms I've had for the past X months. They are interfering with my quality of life and ability to get through the day."
posted by Kitchen Witch at 7:29 AM on November 18, 2020 [7 favorites]

After using my regular doctor to try out some anti-anxiety meds, I finally took the leap and got a therapist and a meds nurse to try and get more focus on some mental health issues that had been getting worse. Then this summer, I had a hysterectomy and one ovary removed. My meds nurse, who is a woman slightly older than I am, recommended I get my hormone levels checked with a nurse practitioner she went to post-surgery, because while my anxiety seems to be improving, I still seem to be depressed and having issues with focus (stupid mistakes at work, for example) and any ability to get motivated to do things. While I have one ovary left, it may have been damaged by the endometriosis that was part of my issue, and so may not be exactly up to snuff.

I'm making an appointment today, and will let you know how it goes, if you like, and I'll also Memail you the name of the clinic if you wish. I was a little hesitant because the office also offers aesthetic stuff like Botox and Juvederm, but I'm going to put that to the side and see how it goes.
posted by PussKillian at 7:29 AM on November 18, 2020

I was going to second leslies and say you need a full thyroid panel. I have Hashimoto’s and prior to my magical daily pill I could have written much of what you wrote re: symptoms. You could always attempt to find an endocrinologist, but my GP is an internist and we’ve been able to start a great treatment plan.
posted by sara is disenchanted at 7:29 AM on November 18, 2020 [2 favorites]

I agree that a thyroid check is in order. An endocrinologist would be the specialist for that. For hormones related to the female reproductive system, gynecologists are the specialists to see but not all gynecologists are good at hormones. The North American Menopause Society is an association for physicians who specialize in treating "midlife health" or menopause. I started seeing a midlife health specialist when I was only 30 (after suffering with symptoms for 10 years) so don't feel like these folks are just for women who are old enough to go through natural menopause. Good luck. I hope you can feel better soon.
posted by ruddlehead at 7:30 AM on November 18, 2020 [1 favorite]

No specific doc recommendations, but I found the magic words to finally get a referral were more or less, "Document in my chart that you are refusing to refer me to X Kind of Doctor" -- suddenly they were really into getting me a referral. Good luck, our medical system is incredibly stupid and very upsetting and I wish you the best.
posted by Medieval Maven at 7:31 AM on November 18, 2020 [5 favorites]

I agree that these generally sound like thyroid symptoms. But also, given your specifications I would suggest looking into functional medicine, which is pretty big on running a lot of tests.
posted by lgyre at 7:43 AM on November 18, 2020

Statistics from the American thyroid Association say that one in eight women will develop a thyroid condition in their lifetime. I and my best friend ( I know, an n of only 2, but still) both developed it. My friend after childbirth (common) and I developed a thyroid goiter in my mid-40's. Both of us take levothyroxine hormone daily and both feel great. I had a fine needle aspiration of my goiter to rule out thyroid cancer, and it was ruled out.

Another symptom I found irritating when I discovered I was hypothyroid was chronic constipation and very dry skin. Both improved greatly after I started thyroid supplement. I followed with an endocrinologist for a few years, as they wanted to do annual ultrasounds on the goiter (it shrunk greatly after levothyroxine supplementation) but now my primary feels quite comfortable prescribing my med, and I have a yearly TSH blood test. My medication dose and TSH level have been stable for more than a decade.

Additionally, thyroid disease can occur at any age, but is more common in mature women than young women, and at least 5 times more common in women than men. It's diagnosed with a simple blood test. If your TSH level is on the low side of normal, or just under, as mine was, you may need to press for medication. It has made a tremendous difference in my life.
posted by citygirl at 7:51 AM on November 18, 2020

If you are in a part of the US where you have access to Planned Parenthood, they'll have the ability to get the labs ordered and usually, though no guarantees, are more inclined to listen and hear you.

You don't need to get pregnant to get tested over time (and you don't get that kind of testing if you were, so maybe just explain in words but not procedures what you're trying to ask for), but you also don't have to get tested repeatedly to confirm that things are fluctuating in some cases (though in the case of thyroid specifically, you likely will).

There's nothing odd or difficult-to-obtain about getting bloodwork, you're supposed to do it every year, so you shouldn't really need to use phrasing like "hormones assessed" (you need other stuff assessed too). You are a middle-aged woman probably looking down the runway of perimenopause, you have fatigue and brain fog and hair loss. List out your symptoms; you don't have to figure out the diagnosis. There's bloodwork for that, and you are entitled to it.

The one thing you may want to ask about is whether they're only going to do TSH and T4 thyroid tests first and the other thyroid panels only if those raise a flag; a lot of women's health advocates say the flag doesn't always get raised when it should when based on just those. It can be a little bit of a tussle to get the entire panel done up front, and some insurance simply won't pay for it unless justified by the first tests, so you may have to negotiate a cash deal on that.

Given your difficult medical experience you might focus on finding a doctor with whom you feel you can have a good relationship, as there's nothing special necessary to get this kind of testing done. The link above for midlife health physicians seems like a great place to start. You can use a general review forum like Yelp as well, but only do that with a critical eye, because a lot of people have very high medical anxiety and take it out in reviews. But that is a good way to see if generally people are happy with the office procedures/staff and the physician themself. I feel like, now that I'm out of childbearing years, my need for a gynecologist is far less pressing than a full-picture doctor I can run everything through from hormone garbage to joint issues to anxiety, branching out from there to specialists when necessary but having a "home base" medically.

Also, don't be afraid to walk in to your chosen doctor with a notebook with notes (and pen to take more notes) in hand, and take a moment to explain your recent experiences and frustration. If you have a friend who will get on speakerphone with you and take notes and make sure you're getting heard, set that up. It sucks that you sometimes have to be a bit extra to get the good customer service, but it works.
posted by Lyn Never at 8:17 AM on November 18, 2020 [1 favorite]

Everyone's mentioned thyroid issues, so I'll just add that I had very similar symptoms to yours but was at the end of my rope when multiple tests by multiple doctors showed no abnormal thyroid levels. I was eventually shuffled along to a neurologist who tested my vitamin levels and discovered a vitamin D deficiency and low-ish levels of B12. Taking some initial mega doses and then on-going maintenance doses has eliminated the worrying memory issues I had, as well as most of the (pre-pandemic levels of) fatigue. I mistakenly assumed that routine blood-work would have alerted my primary care doctor to vitamin deficiencies, but alas, that is not the way this health system works. You might learn similar info with a low-stakes "vitamin and nutrition panel" if you haven't had one already.
posted by cocoagirl at 8:17 AM on November 18, 2020 [5 favorites]

Nthing the thyroid. Mine's been out of whack (hypo) since I was a teenager and what you describe is exactly how I am when it's not in check. Note that even if you get the right dosage of synthroid/levothyroxine once, you need to keep on top of every few months or so; life's little changes may mean your dosage needs adjusting. Data point - early 40s cis female, been feeling like crap a lot like you've described, got some new blood work and low and behold my TSH numbers have creeped up again.
posted by cgg at 8:18 AM on November 18, 2020

Mod note: From the OP:
Appreciate everyone's concern about the thyroid thing.. *and*.. I was nervous that i might get a lot of replies suggesting a thyroid problem, which is why I tried to specify that "this question is just about researching the (reproductive) hormone question, not what else it could be" part toward the end of my ask.

I have been diagnosed with hypothyroidism since 1998 (autoimmune variety), and have been treated for it all this time, continuously. Recent lab results are "fine." Have I tried things beside synthroid? yes. Do we as a species understand this condition very well? No, imo, we do not. Over the years, I have seen specialists, read main stream and outsider opinions, scoured journal articles on the subject, and in general been all down, around, and up the rabbit hole of that diagnosis. Could thyroid stuff still be at the root of my current symptoms? yep. Just, not what I was hoping for help figuring out in my ask. Thanks again, in advance.
posted by LobsterMitten (staff) at 8:37 AM on November 18, 2020 [1 favorite]

Sorry sorry if that pile-on wasn’t helping. Have you considered an endocrinologist then? Maybe one that works with or within a network of ob/gyn? Maybe ask your gyn for a referral to a good endo.
posted by sara is disenchanted at 9:11 AM on November 18, 2020

I wanted to second cocoagirl to ask that you make sure to get your B12 levels checked. Turned out I had both thyroid and low B12 issues ... sigh.

In terms of the hormone question, I can recommend my gynecologist in the Washington, D.C. area. They are doing telemedicine right now, and also may be able to recommend someone in your area if you are not in D.C.
posted by gudrun at 9:22 AM on November 18, 2020 [2 favorites]

Hm. A friend of mine in her forties did not have hair loss, but did have low energy & inability to concentrate, and she ended up getting an OBGYN to prescribe her testosterone. What I remember is that she had to do all the work herself: the hormone testing didn't turn up anything conclusive and nobody had any theories or recommendations, but she ended up doing a bunch of her own reading and then seeking out a doctor who had been quoted in the media as prescribing testosterone. The doctor gave it to her, and it worked. (Or at least, her problem resolved around the same timeframe.) She was very happy.

I don't remember the doctor's name, but maybe the general notion will be helpful for you anyway.

Oh and I can recommend my own former OBGYN in San Francisco for tests if you want: Dr. Ricki Pollycove. She is ludicrously expensive: I think $800/year for concierge-style medicine plus IIRC a per-visit fee, and I don't think she takes any insurance. But she was extremely capable and efficient, I saw her twice for a specific reason, and honestly I felt like on balance it was good value.

Good luck :)
posted by Susan PG at 11:59 AM on November 18, 2020

An endocrinologist will look at it more broadly than a gyno. Mine looked into: prolactase, testosterone, ferritin, vitamin D and glucose/insulin levels, in addition to TSH, and it turned out that vitamin D and insulin resistance were the culprits in my hair loss case, with similar confusion symptoms.
posted by I claim sanctuary at 12:23 PM on November 18, 2020 [1 favorite]

When I had those symptoms which got more and more severe, it was eventually diagnosed as anaemia. I had an iron infusion and the difference in improvement was like night and day. So maybe get your iron levels checked?
posted by Jubey at 3:09 PM on November 18, 2020

I also have a thyroid issue BUT! I have pernicious anemia so my B12 is often out of wack. Low b12 will 100% cause everything you're experiencing so I agree you need to have that checked. My hair loss only stopped once I got my B12 corrected. Def. look into a vitamin panel.
posted by Countess Sandwich at 3:31 PM on November 18, 2020 [1 favorite]

Two other potential and hormone-related causes for the symptoms you describe, which you could explore and ask about if you haven’t: PCOS and peri menopause. Regarding concentration and memory loss, ADHD symptoms can get worse with (peri and full) menopause.
posted by meijusa at 10:52 AM on November 19, 2020 [1 favorite]

Since you know about your thyroid, I would have vitamin levels checked. Vitamin D is a hormone too--maybe you're low and need to supplement. Peri-menopause is also possible--it was nasty to me; post-menopause is so much better.

A full blood work up seems to be what you need. I've got Hashimoto's and my doc is always bleeding me twice a year for everything--thyroid panel, vitamin levels, estrogen, testosterone--you name it, I get it. Certainly, it's a good place to start.
posted by ceejaytee at 12:38 PM on November 19, 2020

If you just want to have a lab done and are willing to look up how to read the results, you can order it online. If a reading is out of guides, you can bring it up to your regular doctor. I use to do that when I needed to monitor a health condition but didn't have insurance.

href="">Female Basic Hormone Panel Blood Test

posted by stray thoughts at 8:14 PM on November 19, 2020

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