"It's all in your head." Advocating for Proper Diagnosis for Female Patients

[angeloublue22, BSN, RN]

This is going to be a long one but I had an interaction with some providers today that lead to me think about some things. 

I'll start this post by sharing my own experience.

I have Hashimotos and was diagnosed 3 years ago after trying to tell multiple providers that I had a thyroid issue.

My journey started 20 years ago when, my normally energetic self, found it hard to get out of bed. I started gaining weight after losing 100 lbs. Since my teens, I've always followed a strict diet based on recommendations and I loved exercising (I know I'm weird) but I always had trouble with my weight.

Anyway, those years I lost all energy, started losing hair, and gaining weight even though I was still forcing myself to exercise and follow my diet. I went to a doctor, I mentioned my family history. I told her about everything I was doing to lose weight (now I know that was my 1st Hashimotos flair). I kept a food and exercise journal.

My provider told me quote,"I think you are lying to yourself. That's impossible to not lose weight if you're telling the truth."

She said the lack of energy was because I was depressed.

I am a very happy person and loved my life, I just didn't have the energy.

She then gave me a pamphlet about walking a hour a day (I ran, yoga'ED, kickboxed, wt lifted 6 days a week for at least 3 hours a day) and gave me a diet to follow (I already did).

She didn't even run labs. 

I was young and didn't know to fight for myself. I felt defeated and stupid. I did not go to another Dr. for 10 more yrs.

Through that time, I got up to 310 lbs following the same diet and exercise routine. Then I decided to try keto and lost 120 lbs and kept it off and my hair came back and I felt great.

My next doc ran labs and they were all normal at that time.

Four yrs ago, I started losing my hair in clumps, I had no body hair, mood swings, no energy, gaining weight again, brittle nails, brain fog and dry skin (textbook hypothyroid symptoms). So, I decided to see another doc (I had moved) to see what was going on. She said I had low T3 but that's not a big deal and that's nothing to treat.

I told my friend who was becoming a NP about it and she asked if they had done a TPO test as she said it's sounded like Hashimoto's (I didn't actually know much about the disease) and when I asked my provider she didn't see a reason to draw it.

I was so angry and so was my friend.

Two months later, my friend became an NP and said she would make it her mission to find out what was wrong with me and she did! My TPO was in the 50's. I started lio and levo and I'm doing better.

Anyway, this brings me to my frustration with providers not listening to pts, especially women (even if you work in the medical field). 

This has given me unique perspective and now I make it a soapbox issue to advocate for pts and encouraging doctors to not immediately go to - it's all in your head. I have a new job where I facilitate transfer of pts to a large hospital including facilitating provider consults and giving advice.

The other night, I had to advocate hard for a female pt and that's what triggered this post to remind us that we do have some power to change this issue.

It was a really interesting case. I don't want to give too much info but it was a pt that was having paralysis on one side after syncopal episodes upon waking with t wave abnormalities that happened 2 times is 2 days. No history of this and no history of mental health issues.

We had the sending doc, our neurologist and cardio on the line. Both the neuro and cards couldn't really figure out a diagnosis, so both suggested conversion syndrome because she has multiple kids.

I stopped that right in its tracks. I said, "hold on, are you saying that because you can't figure out what is wrong with this woman without any further test, you are going to mental issues?"

I reminded them that she didn't just have 5 kids 2 days ago, and let's not be the providers you hear in the news that chalked pts real symptoms to mental issues and then something really serious happens.

"Can you think of anything else that might be going on?"

(They're are used to me being a little prickly, LOL) 

Thank goodness we have a good team that respect nurses because all 3 told me I was right and brainstormed some more and ended up admitted pt to our seizure unit.

Frankly, I'm getting tired of hearing stories in the news and from women in my own life that were not listened to and ended dying or have serious medical issues that could have been prevented. I would love to hear stories about how you advocated to pts getting a medical diagnosis over mental health and how you approached it. 

[canoehead, BSN, RN]

Docs I've worked with would listen if I had an idea of what might be happening, but they aren't so open to hearing they need to look further, without other ideas.

[hppygr8ful, ASN, RN, EMT-I]

canoehead said:

Docs I've worked with would listen if I had an idea of what might be happening, but they aren't so open to hearing they need to look further, without other ideas.

True that. I had a doctor several years ago about the time my chroic pain made it's first attack. This was at the time that physicians were handing out opoids like candy. He did not do any differention testing. For five years he refused to take a deeper look at what was happening . I changed jobs and got new insurance and was amazed at how complete an assessment that was done. I don't know if the first doctor treated men differently. 

[vintagegal, BSN, DNP, RN, NP]

As a provider I've diagnosed retinal detachment after ER cleared a woman who was diabetic and had an eye injury. I sent her to ophthalmology immediately for an emergency appointment and thank goodness I did, or she would have been blind. They did the surgery same day. Nobody wanted to listen to her, she had stated several times she was seeing flashing lights and ER said it's probably allergies and gave her eye drops! Wondering if they even did an eye exam?

[hppygr8ful, ASN, RN, EMT-I]

vintagegal said:

As a provider I've diagnosed retinal detachment after ER cleared a woman who was diabetic and had an eye injury. I sent her to ophthalmology immediately for an emergency appointment and thank goodness I did, or she would have been blind. They did the surgery same day. Nobody wanted to listen to her, she had stated several times she was seeing flashing lights and ER said it's probably allergies and gave her eye drops! Wondering if they even did an eye exam?

Interesting: I had a spontaneous Retial detachment on memorial Day Weekend 2022. I went to the ER with a raging headache and diminished vision in my left eye. ER Doc literally scrached his head and said "You really can't see out of your left eye?" At least He did send me to optomology that same day with sugery the next day as I had eaten.  It took months to heal due to my diabetes and later had a cataract removed from that same eye. 

I think it's good to remember that ER doctors are generalists not specialists. 

[toomuchbaloney]

Our health outcomes reflect a problem in women's Healthcare.  It  likely has components in medical education and in the medical business model. 

[Emergent, RN]

hppygr8ful said:

Interesting: I has a spontaneous Retial detachment on memorial Day Weekend 2022. I went to the ER with a raging headache and diminished vision in my left eye. ER Doc literall scrached his head and said "You really can't see out of your left eye?" At least He did send me to optomology that same day with sugery the next day as I had eaten.  It took months to heal due to my diabetes and later had a cataract removed from that same eye. 

I think it's good to remember that ER doctors are generalists not specialists. 

I was having weird lights in front of my eyes as I was looking at the computer, while at work in the ER. I told my doctor there that I was working with, and he said I needed to leave work and have my eye scanned. I called my eye doctor and got an immediate appointment, and left work. On the way home which was about a 50-minute drive, I started getting a really bad headache.

I got there, the eye scan was negative, and we decided that I probably had a migraine and that was an aura. I later figured out that when my blood sugar gets really low, I'll get these lights and then start getting a headache. If I eat something it prevents it. It still happens once in awhile but I can avert the headache with food.

[Cricket183, BSN, RN]

This is a personal story not one of my patients.  I had severe Covid with respiratory failure in July 2020.  I required home oxygen for 13 months.  Within a few weeks of being discharged, I started walking (with my oxygen concentrator in a backpack).  At first I could only make it to the mailbox and back and had to stop multiple times due to SOB and tachycardia. (I was put on beta blockers to help with the tachycardia).  Over time, I got to where I was able to walk longer and longer with fewer episodes of tachycardia and SOB and slowly over time worked up to 2-3 miles a day at a good pace (still with oxygen).  I was at about 6-7 months out and doing pretty well and I started having episodes of tachycardia even at rest.  My HR was 90-110 at rest.  It would shoot up to 110-130 just standing and walking around the house it would get up to 120-140.  If I tried to exercise, it would get up 150-180, and a few occasions in the 200 range.  So, naturally I went to the cardiologist (who had followed my case when I was hospitalized and immediately after discharge).  He did an ekg which showed sinus tach.  He told me it was anxiety.  I told him I was not anxious (always been very calm).  He told me even if I didn't think I was anxious I had been through a traumatic ordeal with almost dying and that it was normal to have anxiety and the beta blockers should help.  I again told him I really wasn't anxious.  Yes, it was traumatic but I was OK. And I didn't feel like the beta blockers were helping any more.  Then he made one of the most dismissive, sexiest comments I've ever heard from a doc.  He took my hand and said, "Look, you're a beautiful women and as you continue to exercise and lose weight (I had dropped about 25-30 lbs), you'll continue to feel better.”  What???  I was taken aback but managed to say, "But I can't exercise because my heart rate is getting too high.”  He was already up and moving toward the door saying, "Keep doing what you're doing and I'll see you again in 6 weeks.  I knew there was no point trying to argue my point and honestly, I was in such shock I probably couldn't have formed a logical argument if I had tried. I checked out with the front desk and the receptionist asked when he wanted to see me back.  I politely said, "I won't be back.” and left.  I found another cardiologist who immediately ordered a 30 day monitor and discovered I was having frequent episodes of SVT.  Started on Corlanor and did amazingly well cardiac wise after that.

[hppygr8ful, ASN, RN, EMT-I]

Emergent said:

I was having weird lights in front of my eyes as I was looking at the computer, while at work in the ER. I told my doctor there that I was working with, and he said I needed to leave work and have my eye scanned. I called my eye doctor and got an immediate appointment, and left work. On the way home which was about a 50-minute drive, I started getting a really bad headache.

I got there, the eye scan was negative, and we decided that I probably had a migraine and that was an aura. I later figured out that when my blood sugar gets really low, I'll get these lights and then start getting a headache. If I eat something it prevents it. It still happens once in awhile but I can avert the headache with food.

When my suger gets low I get a blue spot in my left eye. 

[nursej22, MSN, RN]

I woke up one morning with a weird light/rainbow in one corner of my eye. It didn't hurt, so dumb me just ignored it, partly because I was out of town, with my son, and didn't want to worry him. 2 days later I called my optometry office, who sent me to a retinal specialist, because over the phone, they presumed I had a retinal detachment. I endured a very uncomfortable exam and was told I had vitreous retraction, come back in a year. A week later, I saw my PCP for dyspnea. I was in atrial flutter with a heart rate of 40. Got that all sorted out, and a year later I have my annual eye exam. I had a left visual field cut, likely due to a CVA from my atrial flutter. I was sent back to that same retinal specialist, who said nothing about the field cut, but noticed I had dry eyes. Come back in a year. Nope.  

[angeloublue22, BSN, RN]

Cricket183 said:

This is a personal story not one of my patients.  I had severe Covid with respiratory failure in July 2020.  I required home oxygen for 13 months.  Within a few weeks of being discharged, I started walking (with my oxygen concentrator in a backpack).  At first I could only make it to the mailbox and back and had to stop multiple times due to SOB and tachycardia. (I was put on beta blockers to help with the tachycardia).  Over time, I got to where I was able to walk longer and longer with fewer episodes of tachycardia and SOB and slowly over time worked up to 2-3 miles a day at a good pace (still with oxygen).  I was at about 6-7 months out and doing pretty well and I started having episodes of tachycardia even at rest.  My HR was 90-110 at rest.  It would shoot up to 110-130 just standing and walking around the house it would get up to 120-140.  If I tried to exercise, it would get up 150-180, and a few occasions in the 200 range.  So, naturally I went to the cardiologist (who had followed my case when I was hospitalized and immediately after discharge).  He did an ekg which showed sinus tach.  He told me it was anxiety.  I told him I was not anxious (always been very calm).  He told me even if I didn't think I was anxious I had been through a traumatic ordeal with almost dying and that it was normal to have anxiety and the beta blockers should help.  I again told him I really wasn't anxious.  Yes, it was traumatic but I was OK. And I didn't feel like the beta blockers were helping any more.  Then he made one of the most dismissive, sexiest comments I've ever heard from a doc.  He took my hand and said, "Look, you're a beautiful women and as you continue to exercise and lose weight (I had dropped about 25-30 lbs), you'll continue to feel better.”  What???  I was taken aback but managed to say, "But I can't exercise because my heart rate is getting too high.”  He was already up and moving toward the door saying, "Keep doing what you're doing and I'll see you again in 6 weeks.  I knew there was no point trying to argue my point and honestly, I was in such shock I probably couldn't have formed a logical argument if I had tried. I checked out with the front desk and the receptionist asked when he wanted to see me back.  I politely said, "I won't be back.” and left.  I found another cardiologist who immediately ordered a 30 day monitor and discovered I was having frequent episodes of SVT.  Started on Corlanor and did amazingly well cardiac wise after that.

A very similar thing happened to one of my friends as well. She has long COVID now but back then they didn't know it existed. It took her a year to get help. I'm sorry this happened to you. 

[Emergent, RN]

Here's an interesting article. Do you all think women are more prone to hypochondria? 

Women 'greater hypochondriacs', research shows