I've officially confused multiple doctors

[Simkie]

@StarPattern

since all my medical tests come back normal for the most part.

Therapy undoubtedly helps all of us, and you’ve been through a lot in the last several years.

But I’d like to point out: you have a notable, very REAL, medical condition in the anemia and B12 deficiency. One that could absolutely be at least a part of you not feeling well. Until your anemia is resolved–not resolving, but resolved–you just don’t know how much that’s contributing here, but since you’re feeling better as it’s getting better, it’s pretty clear it’s got at least SOME role.

So give yourself some grace, and ease up on the pressure to be 100% better RIGHT NOW (I know it’s hard) and do track down a therapist & maybe a consult with rheum…but also give yourself some credit that some stuff is moving in the right direction, and hopefully you’ll continue to improve.

[dmveventer]

I’m sorry, that’s a really frustrating situation to be in. Even after going through the ringer myself I’m still shocked by how many doctors are unwilling to work through tough cases for their patients. Could you potentially find a more supportive GP that’s farther away, if it was just temporary until you hopefully get a diagnosis? Most GPs aren’t knowledgeable enough to deal with the rarer or more complex endocrine issues, and if yours refuses to refer you to a specialist I’m really not sure what else you can do but find one that will.

@StarPattern

Sometimes I wonder if I do need some therapy or something, since all my medical tests come back normal for the most part.

You have real symptoms telling you something’s not right, that’s not in your head. Medical research has explored such a narrow slice of what’s out there and our understanding of “normal” can be limited by that. Research is also heavily skewed towards middle-aged white men, who are NOT representative of the rest of us. If you were a man with low sex drive your doctors would be all over it, but women’s reproductive health is still criminally under-researched. Just because your tests come back normal according to the medical textbook definition doesn’t mean there isn’t something wrong - they may not have run the right tests, you may have multiple issues working against each other, or you may just not fit into the “normal” range for some things. In any case, from what you’ve posted here you do have several things that are obviously not normal - your doctor just isn’t dealing with them, which is not on you.

Therapy never hurts though, you’re going through a lot right now and sounds like you’ve been through a lot in general the past few years. There are good virtual options out there so you aren’t limited to local providers, and if nothing else having a neutral party to talk to about this stuff is incredibly helpful. The stress of dealing with an unexplained illness can also manifest in physical ways that aren’t connected to the actual underlying issues, so managing that can help clear the field to determine what’s really a symptom or not.

[ReSomething]

You need an ANA test. It’s the one that gets you in the door for treatment of autoimmune disorders, from A to Z, and unfortunately we seem to need a way to pigeonhole illnesses otherwise it’s a case of test after test and waiting for one to stick.

However you may have had one and not been in a flare, I forget who it was who had to work herself into a flare to ensure when she had her bloodwork done it would accurately reflect her issue. Which it did, after a number of tests that did not reflect it.

Lots of not so fun issues that manifest but all have to be put together to get a diagnosis. Stress is a huge one for kicking it off. You’d be seen by a rheumatologist and there are several more definitive tests to narrow things down.
Very basic descriptions here https://www.medicinenet.com/what_are_the_11_criteria_for_lupus/article.htm

[RMJacobs]

I get 'roid rage too, but for some reason joint injections don’t trigger it. It’s a good thing as I wouldn’t be walking at all if I couldn’t get my knees injected periodically.

I don’t have any suggestions for your situation, but am certainly jingling for things to improve.

Rebecca

[RMJacobs]

Some of those things (brain fog, exhaustion, not getting good sleep) can be autoimmune related. I have them due to having rheumatoid arthritis. Fibromyalgia is another possible culprit, but most doctors diagnose fibromyalgia because they really don’t know what is wrong with you. I hope someday it will be understood. But RA and lupus are diagnosable (usually) and they regularly cause the symptoms I listed. Also there are meds that are effective for a lot of people (but unfortunately not everyone).

Rebecca

[4horses]

Any history of tick bites?

Any gastrointestinal issues? Are you not getting enough iron and B12 in your diet or are you simply not absorbing it? As that would make me wonder about gastrointestinal issues affecting absorption.

[FjordBCRF]

@StarPattern

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.

Stress was certainly what caused my issues to explode. I was diagnosed with EDS in 2015 and put on beta blockers which got rid of my chronic headaches, so that was HUGE win there. It was instantaneous pretty much.

Coincidentally, this was also during probably the highest stress years of my life and what initially caused the flare so bad that I got diagnosed in the first place. I was on a huge global project at work that was into year 2. I was also hosting an exchange student because it was something my ex-husband really wanted to do and that was just awful. Kid was great, but it was not my choice in timing and I felt like my safe space of home had been invaded and had to firmly put my foot down we were hosting ONE kid, not the entire cohort of 20 of them that were in our district and I would not have a house full of people every day of the week OR every weekend for that matter.

We were also living very tight financially having bought a new home in 2014 that was at my max (I was the breadwinner). Just had come off two house payments until the old one sold, and I still had two car payments that had a couple years left.

Oh! And then when exchange student left, my ex husband decided he was unhappy, left under the auspices of “work”, never came back, so I divorced him. That spanned 2017-2018. I was just getting my life resorted out and covid hit so add that in LOL.

I basically shut down during that time and THIS YEAR in 2024 I am finally feeling functional. That though is also with some new diagnoses and with the help of some new meds, the specific supplements, a revamped diet, a revamped lifestyle, and the ability to continue working full time remote through an ADA accommodation. 2021 my life started to settle out how I wanted it and 3 years later, I don’t dread waking up every morning only to feel like a zombie moving throughout the day. I am seriously thankful every day I get that I feel functional.

Never discount what stress can do to the body.

[candyappy]

@StarPattern

The symptoms that bother me most are the low/no sex drive, fatigue, brain fog/memory issues, and muscle weakess/pain.

Really sounds like menopause for a lot of women , except for the muscle pain.

[hoopoe]

I agree with others who suggest a second opinion with endocrinologist or internal medicine specialist. I agree that many of these signs are those of menopause but there could be other issues, including adrenal and Lupus ( notoriously hard to diagnose)

I had profound muscle pain when on estrogen blockers, post menopause.

Im a little taken aback by a pharmacist reading medical results and diagnosing and prescribing

[glitterless]

Have you ever had testing done for sleep apnea? That could explain the fatigue and brain fog.

I agree with the idea that you could have more than one issue going on. You may never find the cause of all problems, but finding a way to manage specific symptoms could improve your quality of life greatly. I hope you get some answers soon.

[PonderosaM]

I know several people who have reversed long covid using Artemisinin, Zinc and Vitamin D. Artemisinin is a Chinese herb that was developed to fight malaria, interestingly, it also works incredibly well against Covid. I think they used a 10-30 day protocol. Starting with a high dose of Artemisinin like 800mg for the first few days (split dose) then lowering the dose to 400 mg for 2-5 days, then 200 mg for another 5 days. Zinc also started high and tapered down with the Artemisinin, take 15-30 mg of zinc at the same time as the Artemisinin. High dose zinc does displace copper, so you don’t want to be on more then 50mg of zinc per day for too many days, but a short period wont hurt you. Vitamin D stayed high the entire time, liposomal source if you can.

Regarding the suspected autoimmune stuff:
If you find it helpful, one company I have been ordering my supplements from as well as products for my animals, their founders story is one of battling autoimmune diseases all her life and then finally reversing all of it with natural remedies. Personally, I love their products (my horses and dogs do too!) and their customer service is great. Ill link to their about us section if you are curious.

Sorry you are going through this, its really tough and i imagine quite frustrating when no one has a good answer/solution for you. Hope you find the support you need!

https://headleyholistics.com/pages/our-story-headley-holistics

[RMJacobs]

There is absolutely no scientific support for natural remedies reversing autoimmune conditions. Telling someone there is troubles me greatly. I am on several medical forums, and I can’t tell you how many people with RA said they used natural remedies for a while and ended up with permanent joint damage. My rheumatologist is on top of all the latest research, and he says the only proven way to diminish autoimmune symptoms and to go into remission are through medication.

Rebecca

[red_mares]

I would be inclined to look into going to the Cleveland Clinic or the Mayo Clinic, armed with everything you have, and see what they can tell you. You doctor doesn’t have a clue; go find someone smarter.

[foggybok]

I’d agree with getting to a rheumatologist. At least get the bloodwork to rule it out.

Some of what you have sounds like post viral syndrome like CFS or long COVID.

Some of what you describe is setting off bells in my head from when I first had ovarian issues. Have you had a gynecological ultrasound? Given the abdominal bloating, pain with sex etc, I’d be looking for cysts or cancer. Either and ultrasound or CT scan might be useful. Not to scare you, but it’s an easy rule out and not uncommon for women your age. And tends to go unnoticed for too long, best if caught early.

Best of luck finding an answer. Keep pushing. If you aren’t getting answers find another doc.

[Simkie]

As someone who lived in Rochester, MN and used Mayo as my clinic: they will give no fucks about this. There’s a solid “get up and rub some dirt in it” mentality there, especially for women. I reported many, perhaps all, of these symptoms to my Mayo doctors and got zero traction.

Cleveland Clinic seems to be more caring in general although I have not personally visited.

I totally agree with “seeing someone smarter” but haven’t found that at all at Mayo Clinic.

[SCM1959]

Are you in the US? If so, will you share your general area?

I’m going to go against the recommendation re Mayo or Cleveland Clinic to suggest a medical school with a robust research division, particularly if autoimmune is suspected.

I know of several because of my work with the Scleroderma Foundation, and would be glad to give some more information.

SCM1959

[AmptUp]

Just a few random comments.

B12 deficiency can cause a ton of issues - many of them you listed. Both B12 and D deficiencies can have huge ramifications.

I also wanted to mention that Vertigo can be caused by an Ear issue or a brain issue. I had to have a full work up from the ETN doctor to rule out it stemming from my ears. Then I was sent to a Neurologist who also did a whole bunch of testing , in order to pinpoint where the vertigo was stemming from. Once they know they can help you.

My daughter had TN when she was a teenager. It was horrible. In her case it went into remission and has not come back. I hope that when your’s settles, you will be as fortunate. xx

[FjordBCRF]

@red_mares

I would be inclined to look into going to the Cleveland Clinic or the Mayo Clinic

I live in the greater Cleveland area. Cleveland Clinic is mostly world renown for its cardiac care over anything else. My heme/onc, nephrologist, and my PCP are through CC. PCP just moved into the CC system in the last year and as I need new doctors, I am slowly transitioning to CC to make things easier. My rheumatologist has a private practice. Care is ENTIRELY doctor dependent. Just because someone works through CC or any other health system for that matter doesn’t mean much and may will treat you like how you’re being treated.

My best recommendation for finding good doctors is to ask around and get insight from patients that have similar health concerns to you. My PCP also does her darnedest when having to refer me to specialists making sure they are best aligned with my health philosophies (IE, Im willing to actually change my lifestyle if needed). The first cardiologist she had referred me to early early on was a total d*ck, I told her so and she was like…oh yeah. Let’s have you see Dr XYZ next time. She has changed systems 3 times since I have been her patient and she is the one I am most inclined to follow.

[Sdel]

@AmptUp

B12 deficiency can cause a ton of issues - many of them you listed. Both B12 and D deficiencies can have huge ramifications.

I was just coming back to say this. I also think MTHFR, which affects the body’s ability to use b-12. B-12 is incredibly important for all hormone regulation, especially sleep and reproductive hormones, the production of neurotransmitters in the brain, and for the regulation of histamine/inflammation.

When I first started taking the methylcobalmin (the bioactive form of B-12) I had a huge uncharacteristic increase in both sex drive and changes in both my sleep pattern and dreams. I also had anemia. I also found that I was a lot more anxious than I had ever realized and now I can tell when things are getting off because I’ll suddenly revert back to anxiety over silly stuff. I can see how the entire list of symptoms can tie into low b-12.

[GoodTimes]

I’ve been assuming the OP is in Canada based on her post saying things started when feeding horses in -50C weather.

Pharmacists in Ontario are able to diagnose and prescribe medications for some common ailments (tick bites, pink eye, UTIs, cold sores, hemorrhoid’s, to name a few), but not the things that OP has described.