Have your cortisol levels been checked? Not just a one-time blood draw but a diurnal cortisol test that measures your cortisol throughout the day. Might be worth looking into
Was she correct?
That suggestion isn’t just a reflection on someone’s mental processes. A psychiatrist can go much deeper into physical causes of a lot of things affected by the brain. That can be very useful for assessment / evaluation / diagnosis of what is going on.
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Likely there isn’t just one cause of everything. This is hard, of course, but if you find more than one cause, at least from there a game plan can be formulated.
Yep. My cortisol levels are super low. We haven’t done the diurnal one, but I’ve had multiple draws over the course of this whole endeavour, at various points in the day. This was a bit of a point of contention for my doctor since “low cortisol usually means you’re not stressed; high cortisol is the stress hormone”, yet the pharmacist also saw my adrenal function as being also low, which he took to mean that I was highly stressed and everything was depleted to keep me functioning.
No sex drive - low
Pain during intercourse - sometimes bleeding
Insomnia
Brain Fog and Memory Issues
Weight gain around my middle - I will if I dint keep my diet tight
Bloating
Hair thinning and falling out more than normal
Bad skin, especially along my cheeks, jaw, stomach and back
Anxiety
Poor immune system
Slow healing injuries (paper cuts take weeks to heal now, I used to heal full tattoos in days)
Dizziness when moving from sitting to standing
Vertigo
Pale skin
White marks and no ‘moons’ on my nails
Double vision
Chronic fatigue
I bolded all your symptoms that I share; sorry if any is TMI. My recommendation is get a referral to a decent rheumatologist. You have a lot of very common and overlapping symptom in the autoimmune space. I am diagnosed with Ehlers Danlos (connective tissue disease), Antiphospholipid syndrome (autoimmune blood clotting disease), POTS, Raynauds, Degenerative Disc disease and I think thats it LOL.
I will share what has helped me the most. THC/medical marijuana has nearly eliminated my chronic fatigue symptoms and anxiety. Serious game changer there…mind you its microdosing Look into colostrum supplements, I started that this year as well and saw immediate improvements in my sleep (Apple Watch) from day one. A friend who also has autoimmune/GI/Skin issues started taking it and it helped her a lot too. I had covid over this past Christmas and the colostrum helped pull me out of what felt like long covid for a few months. Eat CLEAN. If you are eating anything highly processed, cut it out. Adding electrolytes helps some with my POTS symptoms. Mine is worse in the heat and I am on beta blockers for heart palpitations that go along with my EDS. I had an MRI done for my vertigo and that came back fine so that’s just been attributed to the autoimmune soup I have.
I have other symptoms that you didnt list which are more specific to my diagnosis, but I would think you would benefit from having some autoimmune panels run, if only to rule things out. My bloodwork really starting changing about your age (Im 40) and I was glad to have had baselines.
If you dont like your primary care doctor, see if you can find one thats a better fit. I got lucky with mine honestly, I started seeing her in 2006-ish and she’s been one heck of an advocate for me.
I wish you the best of luck, this stuff really sucks and it makes it even worse when healthcare providers push you off.
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Thank you, 
I have my suspicions that I have some type of autoimmune disease going on - I always ready about Addison’s Disease, but it’s rare and my doctor just doesn’t seem like she thinks what I’m experiencing is out of the ordinary.
Finding a new doctor in Canada is kind of a crapshoot - the only reason I have this one is because she’s my husband’s doctor and he asked her to take me on too when all these issues started. He was willing to give up his spot as her patient so I could have a doctor.
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Low cortisol can really make you feel horrible and if it gets too low is dangerous. Your body needs cortisol to function. I’m surprised your Drs are blowing off your low cortisol levels. I’ve been on long-term prednisone many times and always feel like total crap when tapering down from it until my adrenals finally kick back in. My Dr has me taking low dose (10mg) DHEA (an adrenal hormone) and this seems to help
As mentioned above autoimmune is also a consideration. Have you had ANA and ESR tests done?
I’d second looking at autoimmune issues! Similar to you, I have very low blood pressure that results in dizziness from sitting to standing, vertigo, pale skin, etc… and pretty serious eczema that flares with specific chemical exposures. Also had a deviated septum that caused serious facial pain before it was fixed, although who knows what’s all related.
Stress, even when I’m not recognizing it as stress, makes all of these things worse. Perhaps part of the “autoimmune soup” as FjordBCRF put it.
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The hormone doctor had me on DHEA for about 6 months with no actual changes. I’m not sure what ANA and ESR tests are.
The only medical person that seems concerned about my low cortisol is the pharmacist. He sees me weekly for my B12 injections and I think he’s taken a special interest in how weird this situation is. According to him, all the things I’m doing should have me feeling way better. But maybe I’ve been in such bad shape for so long that it’s just taking extra long to start to feel better.
You don’t have a firm diagnosis so you are not treating the underlying cause which is part of the problem. This is pretty normal though, throw a lot of things at your symptoms, and sometimes you luck out and something sticks.
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ANA and ESR are both common tests for autoimmune disorders.
ANA: Antinuclear antibody
ESR: Erythrocyte sedimentation rate
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Actually, I understand that, but I don’t think that was her intent. The neurologist I see now was able to help me. She is also female and is stellar in her patient interactions.
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It’s really troubling that your primary care doctor ordered a B12 test, saw it was low, and didn’t act on that until the pharmacist raised a red flag.
Is there anything else that’s out of range that hasn’t improved, and hasn’t been explained or treated?
Do you go back to your frozen shoulders in your timeline because prior to that is the last time you felt well? Do you think the frozen shoulders relate or are connected to your current symptoms?
I agree that steroid injections can cause knock on effects for a loooooong time, and that effect is very poorly understood. I blame my many steroid injections for a lot, including totally screwing up my period to the point of early menopause :-/
I mentioned my frozen shoulders as a potential for trauma/stress. Even with my frozen shoulders, I felt okay… just unable to move my arms. I didn’t have the other issues I’m working through now. I got a cortisone shot for my shoulder and I will never, ever do that again. It made me absolutely ragey and so angry, but also didn’t help the pain enough to make it worthwhile. I have a really high pain tolerance and for me to complain of pain means I’m in an extreme amount of it. I would rather be in pain than feel crazy like the shot made me feel.
It wasn’t even my GP that ordered the B12, it was the hormone doctor first. Then I made my GP order a follow up. And it wasn’t even my GP, it was her nurse practitioner. My GP would much rather put me on antidepressants, it seems. I really need to find a new doctor, but they’re few and far between here.
Your pharmacist is wrong. “Adrenal fatigue” and cortisol imbalances seem to be the latest pseudo-science trend, and there’s a lot of bad information out there being slung around by influencers and people trying to sell you something. Your doctor is correct that stress causes high cortisol levels. Normal cortisol means either you aren’t very stressed or your system is functioning normally to manage the stress. If your cortisol levels are low that’s a sign that something is messing with your adrenal function - your adrenal glands don’t “deplete” when you’re stressed, but they can shut down entirely or get bad signals from your brain for a variety of reasons.
I have Addison’s disease. You have a few symptoms that are associated with low cortisol but not many, some of your symptoms are the opposite of what you’d see if your adrenal glands were ceasing to function, and many of your symptoms aren’t connected at all. When you say your cortisol is “low” what do you mean? ACTH and cortisol need to be tested first thing in the morning when cortisol levels are naturally highest; testing at multiple times during the day isn’t necessarily going to give you an accurate picture. There’s no formula for how much cortisol a person is supposed to have, it varies by person and by situation. Normal for you might be on the low end of the spectrum as a petite woman (that’s how it is for me).
Have you seen an actual endocrinologist? They can be hard to get in to see but a good one is worth making the trek if you can. Many of your symptoms line up with things they’re accustomed to treating. I wouldn’t be surprised if you had a few different things going on muddling the diagnosis; autoimmune diseases tend to travel in packs, it’s not unusual for people to develop more than one.
Be careful taking advice from your pharmacist on anything other than your prescription medications. They really aren’t qualified to be suggesting supplements or treatments for you, and definitely aren’t qualified to try to diagnose you. I know how difficult it can be trying to find answers when no one knows what’s wrong with you (been there) but sometimes less is more, and trying too much at once can make it harder to narrow down what’s actually going on.
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So as you continue to work through this with your primary doctor, and see specialists, I really encourage you to narrow it down to:
What symptoms are bothering you now
When did those start
What, if anything, changes those specific things, for better or worse
I know it’s really, really easy to want to include everything–we feel like the more pieces the doctor has, the better–but that can really just muddy the water.
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My cortisol and ACTH have been tested before 10am every time, usually right around the 7:30 to 8:30am mark. They’ve just been tested multiple times over and over. Ferritin was tested multiple times at various stages in my cycle, just to see if it changed based on where I was.
Originally, I asked my doctor if I was high cortisol, because a lot of the symptoms are more aligned with that. That’s how we found out I was actually very low cortisol based on the “ranges”. I know, personally, my heart rate and blood pressure is also on the lower end of normal too, so it makes sense my “normal” is lower than the average.
I haven’t seen an actual endocrinologist yet. I’m told I need a referral for that and I’m pretty sure I’d have to have a mental breakdown on the floor of my doctor’s office before they send me to an actual specialist.
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The symptoms that bother me most are the low/no sex drive, fatigue, brain fog/memory issues, and muscle weakess/pain. Those are the ones that seem to affect my overall mental and physical wellness the most and cause the most strain on my life because I am not used to feeling so worn out. Even grocery shopping exhausts me sometimes. But that’s slowly getting better with the B12 shots.
To put it in perspective, I used to be the type that thrived on very little sleep. I was most creative at night, I could juggle multiple things and tasks and I was just go go go. My mind was sharp, I could handle multiple full time jobs with ease, I liked to be busy. Now, I have a hard time remembering my own name some times. I can’t really switch between tasks, I get overwhelmed and even the smallest change overwhelms me to the point of tears. The lack of sex really strains my (new) marriage and while I’m not worried that it’ll lead to divorce, I do feel guilty because I used to absolutely love it and I miss feeling that way.
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Yep, that’s a great list. Now work through when all those things started, how they related to each other on that timeline, and what changes them so you can paint the picture for the doctors.
The sex drive one is the toughest. We just don’t know what really goes into sex drive, and have pretty much no treatment options for that. 
Late 30s is when doctors start shrugging and say “you’re just getting older…” which is just one of many shitty answers.
Hopefully by addressing the rest, and getting you feeling better in general, the sex drive comes along with it.
Figuring out WHY you’ve suddenly lost the ability to absorb B12 seems like a good concrete thing to chase, and that might be best with rheum. Hopefully, as your anemia continues to correct, you continue to improve…your problem list could really all be tied to that. It would be a nice answer if so!!
That’s the toughest part, because all these symptoms hit me all at the same time. I thought it was due to stress from trying to buy a house and deal with his crazy ex wife, but then we bought the house and the craziness died down a bit… and I didn’t start feeling better. I went from wanting sex all the time to being completely okay if no one ever touched me again. It felt like I had so much on my brain that nothing was sticking and even though I was getting sleep, it wasn’t good sleep.
Maybe I am just stressed and have dealt with it so long that my body just doesn’t know I’m actually THAT stressed. Maybe I’m on the verge of a mental breakdown. Maybe I’m mentally burnt out. Sometimes I wonder if I do need some therapy or something, since all my medical tests come back normal for the most part.
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