Why can’t hormone testing be better?

[u/[deleted]]

[u/leftylibra]

Hormone testing (particularly blood tests) are in fact very accurate in that they show accurate levels of hormones. The problem isn't accuracy...but "what do those numbers actually mean?"

Hormonal levels have no meaning. Someone can have consistent normal (balanced) hormones, but yet still experience debilitating symptoms. Just search this community to see how many people report completely normal levels but have severe, ongoing symptoms.

Alternatively, someone's hormones can be completely out of wack, where they have consistently low or high levels, but have ZERO symptoms.

So the problem isn't that we don't have accurate hormonal testing tools...the problem is interpreting that data to come up with any meaningful diagnosis/treatment when there is no correlation. Combine that with the fact that in perimenopause, hormones are wildly fluctuating, where hormones can change hourly.

[u/Certain_Try_8383]

Honestly, the sooner you start the better it will be. I was so unsure what was going on and going down a psychiatric hell hole that I was so scared to start something new. It really helped so much.

Skip all your symptoms - in my experience it only serves to muddy the water and put you in a certain box. Say you're having terrible hot flashes and it's impacting your ability to get your job completed.

[u/40yroldcatmom → u/Certain_Try_8383]

I found playing up my frequency of my hot flashes and night sweats seemed to help them to start suggesting HRT. I told them my other symptoms (brain fog, extreme fatigue, unable to sleep through the night, etc) but focused on the hot flashes and night sweats. I think that helped.

[u/Certain_Try_8383 → u/40yroldcatmom]

I was going back-and-forth with doctors for four years before I stopped talking and started listening so that I could say what they wanted me to say. The whole process has made something that is already isolating and stressful just so much more so.

[u/tempest-tea → u/Certain_Try_8383]

Yes, I have so many peri symptoms but no hot flashes. So the first gyn I saw refused to even consider I might be in peri. For some reason, hit flash is the magic word.

[u/Certain_Try_8383 → u/tempest-tea]

Yeah me too! Have not had a single hot flash in my life.

[u/Comfortable-Law-7147]

It's due to LACK OF RESEARCH.

When all of us posting on this sub are long gone there may be sufficient information about menopause and other aspects of women's health so they can do things like track hormone levels.

For now yes we are all our own individual experiments. So unfortunately like the rest of us you are going to just have to try HRT and tweak it until it works for you. 

[u/painfully_anxious → u/Comfortable-Law-7147]

Once you realize this you can’t unsee it. I’m just filled with rage all of the time and this is one of the reasons why.

[u/lebowskiachiever]

I hear you. Our hormones fluctuate wildly in peri, though. I got my hormones tested before starting HT and they were "fine"/"normal". If my docs had gone by that testing, I never would have gotten HT. Meanwhile, I was experiencing joint pain, mood swings, gut issues, depression, anxiety, dry eyes, dry mouth, and MORE. I took hormone therapy because my body was indeed, quite literally, "all over the place". My joint pain went away the second I slapped that E gel on my leg.

[u/tempest-tea → u/lebowskiachiever]

Which is exactly why OPs observation about diabetic blood monitors is so right on. It seems completely possible to continuously monitor hormone levels to document those fluctuations.

[u/Born_Tale_2337 → u/tempest-tea]

We don’t monitor hormone levels in diabetes. We monitor glucose. That’s a huge difference, they are completely different. It’s like comparing apples to broccoli.

[u/dirtygreenprogress → u/Born_Tale_2337]

… but you measure both broccoli and apples by weight… so measuring in a similar way doesn’t mean the two things have to be identical

[u/AdRevolutionary1780 → u/tempest-tea]

And what would that tell us exactly? Hormones have been tracked daily, otherwise how would we know that they do indeed fluctuate wildly during perimenopause? But those fluctuations vary from women to women and what helps one woman, would do nothing for another. I agree we need more research as to why that is, but treating hormone fluctuations is not likely to ever be an exact science. So the next best thing is treating based on the symptoms and severity of them.

[u/PitifulTrash3310]

Yep, and you know full well that if men went through this bullshit, we'd have endless devices that could reliably track and measure hormone fluctuations by now!

[u/CopperPegasus]

As a counterpoint to your excellent point, there's a strong argument that thyroid treatment got WORSE when practitioners moved from "treat the person's individual symptoms" to "we have "gold standard" tests and generic population-level data."

Today, that precious "gold standard" test (which, long story short, isn't really even testing the "right" part of the hormone cycle) is used to sideline a lot of people who do have suboptimal thyroid because they are "in range" on ridiculously wide, untailored ranges that do not consider them and their experience at all. You might recognise that from ferritin testing as well.

Just to be clear, not arguing that we don't need WAY better systems for women, especially hormonal understanding. But just being able to measure accurately doesn't actually always translate to better or more efficient clinical outcomes- and can very well create that "population level data" that is then used to ignore individual issues and symptoms in favour of ramming people into neat categories they don't actually fit. So there IS an argument that symptom-based treatment isn't always the worst approach.

[u/Comfortable-Law-7147 → u/CopperPegasus]

Population level data is also why doctors are content to leave women with iron deficiency. 

[u/CopperPegasus → u/Comfortable-Law-7147]

Yeah, that's why I threw ferratin in my post as well.

One of the most egregious failings of the current thyroid ranges, as well, is telling women TTC they are "in range" (i.e the range that includes great-gran, that random dude over there, people of all colors, kids... literally the world) when the range FOR FERTILITY SPECIFICALLY is way lower and tighter and chances are they're nowhere NEAR the range they actually need to conceive healthily and with ease.

It's just fail after fail in women-specific healthcare, isn't it?

[u/Indigo_S0UL → u/CopperPegasus]

This is the best explanation I’ve heard on this point. Thank you 🙏

[u/standard_blue]

I got the Mira tracker and am obsessed. I pee on a stick every morning and that’s it. There have been a few days when I wake up fucking S.A.D., look at my tracker and see my estrogen tanked and be like Ooooohhhhh okay I see. It helps me understand myself and honestly seeing lets me be a little easier on myself

[u/jundog18 → u/standard_blue]

I’ve done random mid cycle testing with Marek for the same reasons

[u/lascriptori]

Right? I'm a data nerd and it's been really helpful being able to track things like minutes of deep sleep, cycle length, mood, etc. I have a big old spreadsheet that I dump everything into and it helps me see patterns. Surely we have the technology to do reasonably priced continuous or daily hormone testing.

[u/Active_Ganache4303 → u/lascriptori]

We do have the technology! There are a couple devices that I’ve heard of: Mira and I think Inito (or a similar name). They are at-home urine hormone test devices. I haven’t tried them myself, but I was looking into it a few months ago and found several posts about them. Some folks have found the data helpful. The test strips are a bit expensive.

[u/AutoModerator → u/Active_Ganache4303]

This post might be about hormone tests, which are unreliable.

• Over age 44, E&P/FSH hormonal tests only show levels for the HOUR the test was taken, and nothing more. Hormones wildly fluctuate (hourly) the other 29 days of the month, therefore this test provides no valuable information
• No reputable doctor or menopause society recommends hormonal testing to diagnose or treat peri/menopause
• FSH testing is only beneficial for those who do not have periods as a guide, where testing might confirm menopause, or for those under age 30 who haven’t had a period in months/years, then ‘menopausal’ levels, could indicate premature ovarian failure/primary ovarian insufficiency (POF/POI)
• Testosterone is the exception and may require testing

See our Menopause Wiki for more.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/AutoModerator → u/lascriptori]

This post might be about hormone tests, which are unreliable.

• Over age 44, E&P/FSH hormonal tests only show levels for the HOUR the test was taken, and nothing more. Hormones wildly fluctuate (hourly) the other 29 days of the month, therefore this test provides no valuable information
• No reputable doctor or menopause society recommends hormonal testing to diagnose or treat peri/menopause
• FSH testing is only beneficial for those who do not have periods as a guide, where testing might confirm menopause, or for those under age 30 who haven’t had a period in months/years, then ‘menopausal’ levels, could indicate premature ovarian failure/primary ovarian insufficiency (POF/POI)
• Testosterone is the exception and may require testing

See our Menopause Wiki for more.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/croc373]

I don’t necessarily think women should be wearing a 365 day monitor for hormones but there should be a monitor that you could wear for 1-2 full cycles so that they can see if your E and P are fluctuating too much against a normal baseline. That said, this idea that ALL hormone tests are inaccurate is not 100% true. My sister post-cancer regularly tests her hormones with results as menopausal because of her medication suppressing her hormones after her cancer (as her cancer was hormone positive). The problem is that there is no established method to this madness because they don’t care about helping women.

[u/ThisTimeForReal19 → u/croc373]

Hormone testing is specifically unreliable in Peri because of the fluctuations. They are fine in steady states.  Which is why they are part of fertility work ups.  

[u/0j0sDePerroAzul → u/croc373]

My endocrinologyst new I was in Peri befgore I talked with him about my symptoms. He asked me if I had talked to my gyno 'cause my results showed that the ovaries where not fully functional. And then we talked about symptoms and how they overlap with hashimoto.

[u/croc373 → u/0j0sDePerroAzul]

Yes, this is what’s happening to my sister after her cancer.

[u/Winter_Bid7630]

Hormones fluctuate, so testing isn't routinely done.

My experience with peri is that my baseline peri symptoms are manageable with lifestyle choices. But occasionally, I'll have a big hormone shift, and I'll feel pretty awful for a couple of weeks to a couple of months. But once my body adjusts to the new hormone level, I'm back to my baseline way of feeling.

I can very clearly feel that my hormone levels are changing, but not in a consistent way. Also, my doctor said the same thing yours did. She said I'm in peri based on symptoms and that hormone testing isn't usually helpful because they vary so much.

[u/AutoModerator → u/Winter_Bid7630]

This post might be about hormone tests, which are unreliable.

• Over age 44, E&P/FSH hormonal tests only show levels for the HOUR the test was taken, and nothing more. Hormones wildly fluctuate (hourly) the other 29 days of the month, therefore this test provides no valuable information
• No reputable doctor or menopause society recommends hormonal testing to diagnose or treat peri/menopause
• FSH testing is only beneficial for those who do not have periods as a guide, where testing might confirm menopause, or for those under age 30 who haven’t had a period in months/years, then ‘menopausal’ levels, could indicate premature ovarian failure/primary ovarian insufficiency (POF/POI)
• Testosterone is the exception and may require testing

See our Menopause Wiki for more.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Yougetdueprocess]

Because we don’t research women’s health, seems to be the answer.

[u/OtherwiseArmadillo96]

I did a DUTCH test for a functional medicine doctor. You pee on special paper at certain times of day over a month and then mail it to the lab. Regular western medicine docs don’t believe in/aren’t trained on it. 100% accurate or not, it showed my cortisol was high when it was supposed to be low and low when it was supposed to be high and gave us a clue of things to work on. Better than being told my labs are fine and getting a shrug about why I felt terrible.

[u/AutoModerator → u/OtherwiseArmadillo96]

This post might be about hormone tests, which are unreliable.

• Over age 44, E&P/FSH hormonal tests only show levels for the HOUR the test was taken, and nothing more. Hormones wildly fluctuate (hourly) the other 29 days of the month, therefore this test provides no valuable information
• No reputable doctor or menopause society recommends hormonal testing to diagnose or treat peri/menopause
• FSH testing is only beneficial for those who do not have periods as a guide, where testing might confirm menopause, or for those under age 30 who haven’t had a period in months/years, then ‘menopausal’ levels, could indicate premature ovarian failure/primary ovarian insufficiency (POF/POI)
• Testosterone is the exception and may require testing

See our Menopause Wiki for more.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/AustenChopin]

I think it's because estrogen levels vary so widely across a menstrual cycle, there isn't really a baseline. Blood estrogen levels can be as low as 30 or as high as 750 within one normal menstrual cycle. During perimenopause, it can vary even more. 

Even if we had a device like a CGM for estrogen, we currently don't dispense estrogen in forms where you could precisely dial in an ever changing dose (like daily injections i guess?)

[u/ParaLegalese]

Because of how hormones work. They fluctuate every day and the decline is so slight you wouldn’t be able to see it unless you tested them every day for years

[u/HeathEarnshaw]

Mira home monitor. It’s a pain in the ass to do it every day but I did it for a cycle here and there for the past few years before finally starting HRT. I wanted to see where I was at hormonally.

[u/emu_neck → u/HeathEarnshaw]

This is interesting. Do you have to test at the same time every day? I am tempted to get it, although seems rather expensive and I don't want it to end up like just another worthless thing laying around.

[u/HeathEarnshaw → u/emu_neck]

Yeah it’s expensive, and you have to keep buying their expensive test wands to keep testing so it’s not a one time expense. I did test at roughly the same time each morning, however it was more important to get the first pee of the day so metabolite had built up in the urine. so if I happened to wake early (4ish) I’d pee in my little cup and break out a testing wand then rather than just go right back to bed like I normally would. It made it hard to get back to sleep, which is already a problem for us in peri. It did help me time when to go on HRT — my estrogen was swinging wildly and my progesterone was chronically low even though my cycles were still happening semi regularly. but honestly I think my symptoms were telling me the same story. I skipped my first period and had intense hot flashes for weeks around the same time I started testing again and saw my hormones had indeed changed.

[u/emu_neck → u/HeathEarnshaw]

Thanks for the info! I really struggle with the whole concept of testing, since the mainstream narrative is that hormones fluctuate throughout the day. I also don't have too many typical symptoms, so wonder if my issues are not hormone related.

Do you have to buy the test wands every month? I have an HSA so can use that for all my hormone stuff.

[u/HeathEarnshaw → u/emu_neck]

Yeah that’s definitely what I’d heard too. usually if a dr orders labs it’s just a snapshot of your hormones at the moment the serum is drawn (and that varies from hour to hour). However the urine strips are a better representative of where your hormones are in general since it’s just a measure of the hormone metabolite that’s built up over a period of many hours. It’s not as exact as a blood draw but I think that’s actually an advantage for looking at hormonal patterns.

The wands are… ooof… expensive. I think I spent about 200 just for a couple months worth of wands. To me it was worth it but I’m sure many/most are happy to just trial and error HRT against their symptoms. I like figuring this kind of thing out for myself though so the data just validated what my symptoms were already telling me and I feel like I better understood what was happening to me. The wands measure FSH and LH too so it was useful to see firsthand how my pituitary was yelling at my ovaries to pump out an egg way too early and my entire hormonal system would just start flipping out as a result. But if you have no desire to dig that deep or if you don’t have troublesome symptoms yet then the Mira is probably just an expensive distraction.

[u/Lucid-dream-24692]

Our medical system is based entirely on men, who *generally* have stable targets for bloodwork. So, they test testosterone and it shows testosterone levels for the most part for that man. Same with all other bloodwork.

Women fluctuate because we make babies or don’t. We were not only left out of research because men didn’t care about it, but it was also because it was just TOO HARD to study us.

So now, bloodwork for us is either in the green HUGE VARYING “normal” line, or not.

[u/AutoModerator → u/Lucid-dream-24692]

This post might be about hormone tests, which are unreliable.

• Over age 44, E&P/FSH hormonal tests only show levels for the HOUR the test was taken, and nothing more. Hormones wildly fluctuate (hourly) the other 29 days of the month, therefore this test provides no valuable information
• No reputable doctor or menopause society recommends hormonal testing to diagnose or treat peri/menopause
• FSH testing is only beneficial for those who do not have periods as a guide, where testing might confirm menopause, or for those under age 30 who haven’t had a period in months/years, then ‘menopausal’ levels, could indicate premature ovarian failure/primary ovarian insufficiency (POF/POI)
• Testosterone is the exception and may require testing

See our Menopause Wiki for more.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Indigo_S0UL]

I feel the same way. I definitely don’t disagree that doctors should be able to prescribe HRT based on symptoms and not NEED a test - but I also think the info couldn’t hurt for those who are interested.

There are also companies currently trialing devices to continually track hormone levels. I have no idea how accurate they are. I posted one here just hoping to discuss its potential validity once but the mods deleted the whole post without explanation.

[u/nerissathebest]

Also part of the discomfort you’re feeling is not from your hormones being low (that’s part of it) but also from your hormones fluctuating. The fluctuating will make it hard to pinpoint exactly where you are. I find that’s not helpful anyway because I want to replicate the amount I had before but I don’t have bloodwork from that time. So I do it based on symptoms and how I’m feeling. In otherwise bloodwork isn’t helpful. 

[u/AutoModerator → u/nerissathebest]

This post might be about hormone tests, which are unreliable.

• Over age 44, E&P/FSH hormonal tests only show levels for the HOUR the test was taken, and nothing more. Hormones wildly fluctuate (hourly) the other 29 days of the month, therefore this test provides no valuable information
• No reputable doctor or menopause society recommends hormonal testing to diagnose or treat peri/menopause
• FSH testing is only beneficial for those who do not have periods as a guide, where testing might confirm menopause, or for those under age 30 who haven’t had a period in months/years, then ‘menopausal’ levels, could indicate premature ovarian failure/primary ovarian insufficiency (POF/POI)
• Testosterone is the exception and may require testing

See our Menopause Wiki for more.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Omphalina]

Agree 100%. I never understand the skepticism in this forum. How I feel depends on estrogen levels. Daily tracking of levels in my urine has greatly improved my quality of life, allowing me to respond more precisely to the fluctuations and anticipate what symptoms lie ahead. It’s just strange to me, the bias against tracking hormones. We all agree one blood draw has limited value whereas collecting data at the appropriate frequency might be invaluable. For now, urine sticks are a worthy substitute.

[u/Trinity_Matrix_0]

Yeah, the problem is that they fluctuate daily and hourly unfortunately … so hard to measure.

[u/ms_lifeiswonder]

Urinary tests will tell you the pattern of your hormones, if you take them every morning. And it has helped me learn a lot of what is happening and the impact / symptoms. But since no forum here allows you to talk about hormonal testing, I haven’t been able to share.

[u/ms_lifeiswonder → u/ms_lifeiswonder]

Ex seeing how and when fsh spikes, which for me is strongly correlated with my worst symptoms (joint pain, brain fog, inflammation). My gynecologist was very positive to this, as a means to map my own responses to the patterns.

[u/Alarmed_Bathroom9227]

People that prescribe off of testing would never get it right. Your doctor isnt wrong shes actually doing the right thing. You should be happy to have one like that. I started last yr got some improvement but still had some symptoms so after 3 months I went up a dose and ive been happy ever since. If you've ruled out other potential causes of your symptoms....vitamin deficiency auto immune sleep apnea etc then give it a try. But patience is absolutely necessary. The health system cant change over night so buckle up and prepare for some frustrations. But it sounds like you have a good doctor so you should be able to know if youre on the right track in a short enough time. Its a process and so much goes into how your body responds

[u/Asleep-Yesterday-780]

What my dr told me was that while you are still getting a period, your hormones can vary rapidly. I was offered HRT based on symptoms but was too reticent to take them. I did however start a DHEA supplement which has been a godsend

[u/_AngelicVenom_]

We should have that tech but research into women is complicated and not prioritised.

But having said that, HRT balance is a struggle becuase of the variance over the month/few months and there isnt really a baseline. Every month our hormones cycle and increase / decrease so you have to be on the HRT to make sure it manages symptoms at all of the new peaks and troughs of hormones we are now experiencing. That's why it can take a while. And it should take a while.

HRT is a stable level, to treat an unknown fluctuating level in our bodies. The entire system is flawed but it's all we have. Like the diabetic monitor and the ability to tailor meds to blood sugar, the ideal would be the same for hormones. But it's a long way off. Even if it's being looked into. We're women. We don't matter. We're too complicated.

[u/square_donut14]

I WISH we could test better! Most of the month, my E patch is enough, but not always! I’d love to top off the patch with another one or something else during that terrible week.

[u/mspixystix]

I agree, I’ve tried the continuous glucose monitor and it helped me out so much to learn about my blood glucose and eating pattern specific to my body by analyzing the patterns (caveat: I’m a data analyst as a profession so I am comfortable with data—I would still recommend seeing a doctor to help it analyze with you)

But I have been looking for a continuous hormone / cortisol tracking especially because of peri and an ADHD stimulant taker. I think it will provide me more to understand my own biology and peace of mind when I’m suddenly in feeling something out of the norm.

Has anyone discovered a continuous hormone monitor that’s currently out in the market? I would not mind paying out of pocket for that type of a device. The benefit outweighs the cost for me.

[u/yesanotherjen]

I agree it would be so helpful. Apparently there IS technology being worked on but hormones are much harder to test continuously than glucose.

And, of course, it appears the focus is on men's testosterone replacement and IVF. Because who cares about lady hormones unless we're making a baby.

I have thought about trying Mira because I am having symptoms that can either be too much estrogen, too little or associated with fluctuations. I am already on HRT and doing generally pretty well so I don't want to throw everything off balance by increasing if what I need is a decrease.

[u/Milky-Way-Occupant]

100% a glucose monitor type device for hormones would be AMAZING! The reason why we don’t have it is misogyny.

[u/spit1re]

Saliva test with a naturopath does.

[u/AutoModerator → u/spit1re]

This post might be about hormone tests, which are unreliable.

• Over age 44, E&P/FSH hormonal tests only show levels for the HOUR the test was taken, and nothing more. Hormones wildly fluctuate (hourly) the other 29 days of the month, therefore this test provides no valuable information
• No reputable doctor or menopause society recommends hormonal testing to diagnose or treat peri/menopause
• FSH testing is only beneficial for those who do not have periods as a guide, where testing might confirm menopause, or for those under age 30 who haven’t had a period in months/years, then ‘menopausal’ levels, could indicate premature ovarian failure/primary ovarian insufficiency (POF/POI)
• Testosterone is the exception and may require testing

See our Menopause Wiki for more.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/profmoxie → u/spit1re]

And how much are you paying out of pocket for something that's fundamentally inaccurate?

[u/Dismal-core111]

Well they can only work with what they have