I've officially confused multiple doctors

[StarPattern]

The hive mind here is amazing, so I figured I’d see if anyone here can help me get some type of a diagnosis. Apologies in advance for the length of this post.

I am 37 years old. Female. My cycle is so regular I can set a watch to it, right down to the hour. I began suffering from extreme nerve pain in the left side of my face in December 2019 that had the markers of Trigeminal Neuralgia. I got my covid vaccines in May and July 2020. I got a diagnosis of Trigeminal Neuralgia in December 2020.

Symptoms I’ve collected over the years:

• No sex drive
• Pain during intercourse
• Insomnia
• Brain Fog and Memory Issues
• Weight gain around my middle (I’m only 5’3 and maybe 120lbs, so weight gain is apparent)
• 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 if I exert myself (exercise is super fun… I always feel like I’m going to pass out)
• Pale skin
• White marks and no ‘moons’ on my nails
• Double vision
• Chronic fatigue

I had my deviated septum fixed in September 2022 which seems to have put my Trigeminal Neuralgia in remission.

I’ve been to my GP multiple times - first time, she put me on antidepressants. Tried those for a few months, no noticeable difference. Second time, she advised pelvic therapy. Did that for a few months, solved the issue with pain during intercourse. The next time, she did more bloodwork and found my iron was dropping lower and lower, despite taking iron supplements. Prescribed me different iron supplements. I asked about hormone imbalances, she said that wasn’t it since I was too young.

I found myself a clinic that deals with hormone replacement. Did their bloodwork. Came back relatively normal, considering the symptoms I was describing. They put me on a lower dose of hormones anyway, just to see. No change after 8 months.

Swapped pharmacies and the pharmacist there asked me, “has anyone ever told you your b12 is low and your adrenals are depleted?” I said no, went back to my doctor and she ordered more bloodwork to see if I was celiac since that can sometimes show in the inability to absorb nutrients - that test came back negative. I was also prescribed weekly b12 injections. Pharmacist recommended Vitamin C, B5 and Ashwaghanda as well, because a depleted adrenal function can be a sign of extreme stress, even though I don’t feel overly stressed.

I went to Acupuncture and the practitioner did a lot of work around my kidneys, which had me going to the bathroom more than I can remember going. I used to go to the bathroom about twice a day, regardless of how much water I drank, and now I’m going every hour. He also asked me about PCOS, but also said I don’t really have the “markers” for it.

I had lymphatic massage since I was noticing swelling in my legs. That seemed to take care of that and I don’t get those sock rings around my ankles anymore.

I’ve been on weekly b12 injections and all my supplements for about 3 months now with very little change. The pharmacist maintains that he doesn’t think it’s hormonal, but he’s confused because some of my symptoms should have subsided with everything I’ve been doing.

I’m tired of feeling like this. I’m kind of losing hope in the medical world since no one can seem to figure out what my issue is. Help.

[Simkie]

Has anyone really looked at your thyroid? Not just running a TSH but a full panel?

How is your anemia? Any better with the new iron supplement? Has anyone ordered a fecal occult blood test?

And this seems to be the diagnosis du jour, but has anyone discussed long covid with you? It covers a lot of this, too.

I’m really sorry you’re not feeling well, and sure empathize with how hard it is to get ANY traction on this stuff as a woman. I hope things get better soon.

[Sdel]

Have you considered doing some genetic testing? There are gene mutations that affect vitamin utilization.

[OverandOnward]

Have someone in a lab look for thalasemia, minor or major. No idea if this is it. But it is not common and many GP’s know nothing about it. Even though it is readily visible in blood under a microscope.

People looking for thalasemia have to know what they are looking for, and when they see it. They will see it right away. It doesn’t hide. But it is astonishing to me how many medical professionals and lab techs seem to have never heard of it.

[StarPattern]

I’ve had my full thyroid panel pulled twice this year - both times were within normal range. The second pull was actually more “normal” than the first one.

Since starting b12 injections, my anemia has seemed to resolve itself. My iron levels are climbing, which is good. They’re still lower than normal, but levels have doubled from the original reading. What is the fecal occult blood test? I’ve spent so much time in the blood lab that I’m on first name basis with all the techs so it’s possible they’ve done that too.

Long Covid? I’ll have to look into that. Throughout the entire pandemic, I never tested positive for Covid or anything like that.

Funny you mention how hard it is to get traction as a woman - I didn’t actually start making any headway with doctors until I told them how much this was affecting my HUSBAND.

[StarPattern]

Interesting… I’ll have to ask my doctor for that testing. I’ve never heard of that.

[OverandOnward]

@StarPattern

Funny you mention how hard it is to get traction as a woman - I didn’t actually start making any headway with doctors until I told them how much this was affecting my HUSBAND.

I am sorry to tell you this, but as a woman seeking medical help, you have to stage an emotional meltdown to get professional attention. To get a referral to a specialist. Even unto this day in 2024.

From what you say your doctor is doing, in my mind that is damn close to ‘nothing’. Someone is sending you down the easiest routes hoping you will find something that interests you and dive into it on your own. Because women do end up doing that when they aren’t getting constructive help through their GP.

[Simkie]

@StarPattern

Funny you mention how hard it is to get traction as a woman - I didn’t actually start making any headway with doctors until I told them how much this was affecting my HUSBAND.

JFC, I’m so sorry. That’s terrible.

A fecal occult blood test looks for blood in your stool. If anemia can’t be explained in another way, bleeding into the gut is a common cause. If you’re improving, that might rule it out. But colon cancer is showing up in younger and younger people, so do keep it on the radar if it returns.

Pernicious anemia is something to consider since things did improve with B12 supplementation:

https://my.clevelandclinic.org/health/diseases/22377-pernicious-anemia

I’ve been positive for covid twice, and the second time, I only tested because of the muscle aches. Otherwise it really felt like a cold. Poke around in the long covid literature and see how you feel that lines up…at the very least, it’s another avenue to pursue.

[OverandOnward]

Looking at your list, I think you also need to go down the path of ‘heart’ as well. Sundry heart issues would be one answer to many things on your list. As would other things, of course, but you haven’t mentioned heart yet.

The research on heart for women, which is different from heart in men, is decades behind the research for men. The initial studies were male-only. Catching up for women is behind.

[StarPattern]

I just looked up some symptoms for Long Covid and they seem to fit the bill of what I’m suffering with, minus the lack of senses like smell.

They did send me for a stool sample and that came back normal as well. No blood, nothing unusual. They did a test for inflammation in my intestines as well and that came back as “less than 1”, which was explained to me as little to no inflammation. Most celiac sufferers show a minimum level of 5. I adopted a 99% gluten free diet anyway, and that seems to have helped with the stomach issues.

[Simkie]

There are a couple reddit communities that are a great resource for long covid:

https://www.reddit.com/r/covidlonghaulers/

https://www.reddit.com/r/LongCovid/

Entertainingly enough, they’ve even been used as a source for actual published research:

The Long COVID experience from a patient's perspective: a clustering analysis...

It’s such a new diagnosis, and a challenging one, but if that’s what’s making you feel this way, you’re definitely not alone, and work is being done on how to improve it.

[StarPattern]

I think my pharmacist is thinking Pernicious Anemia as well - he’s actually been more helpful than my doctor since he takes the time to go through my bloodwork and research things for me. The B12 injections are helping little by little. The biggest thing is that I don’t hit a wall of fatigue around 2pm anymore. The injections haven’t really helped anything else, but the wall of tiredness is going away so that’s a small step in the right direction.

I’m also considering some mental health therapy because I’ve gone through some really crazy stuff in the last few years and while I don’t feel particularly stressed about it, maybe I’m just used to this feeling and I don’t recognize it as stress.

[StarPattern]

Someone I work with also recommended I look into POTS. So there’s another avenue I need to explore. It’s almost like I need to go to my doctor with a list of things I want them to order tests for and do all the legwork for them.

[Simkie]

Navigating the health system with a challenging issue or set of issues alone is even enough to need some help from a mental health perspective

It’s amazing how crappy anemia can make you feel. That’s great that something, at least, is improving. It’s possible that there was a triggering event (covid or otherwise) that kicked off some auto immune stuff (like pernicious anemia.) Have you been to a rheumatologist? It’s probably a good box to check. Unfortunately, it can be awfully tough to find a really good one.

If you can, it might also be useful to work through your symptom list and put it on a timeline. What came first? When did each thing develop? When have things improved (if they have)? How does that all fit into the treatments you’ve tried? Doing that can make it easier for a curious and involved doc to put it together into a diagnosis.

[NaturallyHappy]

I don’t have any advice, but I do have a great deal of sympathy and empathy. I have a weird neurological problem. The FEMALE neurologist I saw told me I needed a psychiatrist. I was stunned.

[GoodTimes]

@OverandOnward

Looking at your list, I think you also need to go down the path of ‘heart’ as well. Sundry heart issues would be one answer to many things on your list. As would other things, of course, but you haven’t mentioned heart yet.

The research on heart for women, which is different from heart in men, is decades behind the research for men. The initial studies were male-only. Catching up for women is behind.

I work in cardiac ultrasound and it would be a real stretch for the majority of these symptoms to be cardiac related. Of course there could be multiple things going on. You can certainly ask for an echo, presyncope and chronic fatigue are common on cardiac referrals.

[StarPattern]

Thinking back, probably the very first thing that happened was injuring myself while feeding horses in -50*C in approximately 2017. I was forking hay over a fence, I was cold and something tweaked in my shoulders. I lost almost 90% range of motion in both my arms for about 6 months. I went to doctors, physio, Chiro, had cortisol injections (do not recommend). The army asked my boyfriend at the time if he needed to leave tour since I couldn’t even dress myself - he declined. Looking back, that was probably a very traumatic experience for me since I felt abandoned. I ended up teaching my dog how to help me out of bed and help me with basic things since I couldn’t really use my arms. Then one day, I work up with full range of motion again. My boyfriend at the time got home and I started having such crazy panic attacks that I ended up in emergency one night with such a bad one that the doctor on duty thought I was having a heart attack. After they ruled that out, they sent me up for a mental evaluation to see if I was a danger to myself. I’ve never had suicidal thoughts.

December 2019, my face started hurting and I thought it was tooth pain. I’m very afraid of the dentist so I didn’t work up the nerve to go until months later. Covid shut everything down and they weren’t seeing patients outside of emergencies. The dentist called in a prescription for antibiotics, thinking it was a tooth infection. It helped a little and then I started getting electrical shock type jolts through my ear, into my cheekbone and down my jaw.

Got diagnosed with Trigeminal Neuralgia at the end of December 2019. Had flare ups regularly, usually a few days every couple weeks. Never missed work, but ended up routinely giving myself chemical burns with Tiger Balm to distract from the electrical shock pain since the medication they gave me didn’t always help. Found out the Chiro, cold water and sleeping upright helped a little.

April 2020, I started dating a guy going through a divorce. His ex wife hated me and would mentally and verbally abuse me. That’s been ongoing since. In 2023, she actually tried to take me to court for my income since she thought she should benefit from it as well.

The low sex drive and everything started about mid-2021 when we started looking to buy a house. Buying a house is stressful and nothing seemed to be working out. His ex wife was making waves, it was a particular nasty divorce and she was trying her best to make sure he hit rock bottom. I was collateral damage.

September 2022, I went to an ENT because I wanted to see if there was a reason I couldn’t breathe properly. I’m right handed and I grew up only being able to breathe out of my right nostril - I thought that was normal. Turns out, I had a deviated septum. It was so deviated to the left that he had a hunch that part of my nerve pain was due to that. He fixed my septum and I haven’t had nerve pain since.

Started getting after my GP in 2023 to figure out why I was so tired and having all these strange symptoms. I wanted my sex drive back. I wanted to feel normal. So we’ve been at this for a while too.

February 2024, I finally got that pesky tooth removed. It had a nasty cavity, I’m terrified of dentists and it never actually hurt me. I only went because it broke in half and annoyed me. Since dental freezing doesn’t always work on me, that was an experience.

Fast forward until today and I’m still working with doctors and other holistic practitioners to get to the bottom of my issues. It’s basically my full time job now. Ugh.

[JB]

PCOS, and the MTHFR gene would be 2 things I’d want investigated, even though someone said you don’t really have the “markers” for it.

The MTHFR gene means you can’t deal with synthetic folic acid (as opposed to natural folate) which is in a LOT of foods. If you only eat whole foods (which isn’t common these days), or at least never eat anything with folic acid added, then that’s not likely the issue, but something to consider. I have a few friends with this, and while I can’t say I’ve seen them mention some of your symptoms, many of their symptoms are so bizarre you’d never guess it was diet related.

I’m glad you’ve gotten some relief with the B12 injections! That tends to be an issue as people get older (and you’re definitely not “older”) but it’s also genetic for some.

[StarPattern]

I wouldn’t say I eat strictly whole foods, but I tend to eat more on the healthy side. I prefer stuff like fish, rice, beef and vegetables to other things. I don’t eat a lot of bread, but I like oatmeal. Growing up, we ate a lot of farm raised or hunted animals - we used to beg for store bought hamburger as a treat, lol. I don’t drink, smoke or do drugs. My liquid of choice is water. Now I follow more of a gluten free diet and that’s helping. Prior, I would go strictly vegan for about a week every 5-6 months when my body needed a “reset” - I’d start to feel kind of gross and going vegan would kind of flush my system out and I’d feel better.

[OverandOnward]

@StarPattern

The B12 injections are helping little by little. The biggest thing is that I don’t hit a wall of fatigue around 2pm anymore. The injections haven’t really helped anything else, but the wall of tiredness is going away so that’s a small step in the right direction.

This is also a relief for thalasemia as well. If they already have your bloodwork on slides, have someone check for that just to cover the bases. It’s also a type of anemia but I don’t think it’s the same type as pernicious anemia.