Friday OT #2 - “That Isn’t a Thing”

[Angie]

I was chatting with a friend who has both MS and ADHD, which has to be a hard combination when her brain wants to go-go-go, but her body can’t.

She was telling me how people have told her many times that ADHD isn’t real. Having several very close family members who have it, I can say for certain that it is - but people have opinions.

I know there are other things in this world where we know it is real, but other people doubt us. Could be medical, could be that we remember a situation vividly that others say wasn’t real. Maybe we had a crop circle in our field at one point.

This question is hard to formulate well - but what are your stories of doubters and naysayers around things you have seen or experienced?

 

[madguy30]

The 'hanging munchkin' is a crane that moves its wing a bit.

 

[coolerifyoudid]

One time, on safari, I encountered a thought-to-be-extinct reasonable Hawkeye fan

 

[RLD4ISU]

Thyroid problems. People don't believe it can cause so many issues (weight gain and metabolism issues - just for the beginning stuff). Some doctors don't fully understand it and, instead of being willing to research or send a patient to someone that does, they dismiss concerns.

23 years ago I questioned my Dr if I was experiencing some medical/health issues with this (and a couple other things). Since I'd had problems as a young child & spent 7 years seeing specialists, I would occasionally ask for a thyroid test to check this. Doctor looks at my chart and says in a scoffing tone, "Your TSH is normal, in fact it's on the high side of the range". He wanted to prescribe Prozac to "help me deal with things". Fast forward a couple years. New doctor. I questioned the thyroid and mentioned a few other unusual for me things. Doctor runs a full thyroid panel, hormone levels, etc. Physically examines the thyroid. Thyroid panel comes back indicating Hypothyroid. Hormone levels come back indicating PCOS (Polycystic Ovarian Syndrome). She sent me to an endocrinologist. The endocrinologist, after looking at the medical records from when I was a child, was shocked I had "fallen through the cracks" for over 20 years. I've been on thyroid meds since then. Though I have a difficult time finding a doctor that understands the need to run a full thyroid panel once in a while (usually requested if I'm not feeling right), let alone know what exactly needs to be ordered for a full thyroid panel.

 

[SCNCY]

Thyroid problems. People don't believe it can cause so many issues (weight gain and metabolism issues - just for the beginning stuff). Some doctors don't fully understand it and, instead of being willing to research or send a patient to someone that does, they dismiss concerns.

23 years ago I questioned my Dr if I was experiencing some medical/health issues with this (and a couple other things). Since I'd had problems as a young child & spent 7 years seeing specialists, I would occasionally ask for a thyroid test to check this. Doctor looks at my chart and says in a scoffing tone, "Your TSH is normal, in fact it's on the high side of the range". He wanted to prescribe Prozac to "help me deal with things". Fast forward a couple years. New doctor. I questioned the thyroid and mentioned a few other unusual for me things. Doctor runs a full thyroid panel, hormone levels, etc. Physically examines the thyroid. Thyroid panel comes back indicating Hypothyroid. Hormone levels come back indicating PCOS (Polycystic Ovarian Syndrome). She sent me to an endocrinologist. The endocrinologist, after looking at the medical records from when I was a child, was shocked I had "fallen through the cracks" for over 20 years. I've been on thyroid meds since then. Though I have a difficult time finding a doctor that understands the need to run a full thyroid panel once in a while (usually requested if I'm not feeling right), let alone know what exactly needs to be ordered for a full thyroid panel.

This is interesting. I have a hyperthyroid (graves disease), but didn't experience what you did. It's probably because I have diabetes and routinely go to an endocrinologist and get blood taken. So I was in the right place when it happened for them to take care of it.

 

[madguy30]

My girlfriend has RA which can 'look' like nothing's wrong but it's constant pain management so people tend to be baffled if she can't go on longer hikes, etc. And if they DO know, they act like you just need to put some cream on it and 'wahlah!' and that's now how it works.

 

[MJ29]

I was diagnosed with PCOS when I was 22. But it's still such a misunderstood disorder. And, honestly, it's kind of a broad term for anyone with a reproductive issue that doesn't fit any of the other ones.

Anyway, one time, my usual doc was out, so I had to see a different one. She said she didn't believe I had PCOS, so she ordered $1500 worth of blood tests (half of which insurance didn't cover), only to conclude that, yeah, maybe I do have PCOS. My regular doc was so mad that she made me go through that and pay those extra costs.

 

[Angie]

I was diagnosed with PCOS when I was 22. But it's still such a misunderstood disorder. And, honestly, it's kind of a broad term for anyone with a reproductive issue that doesn't fit any of the other ones.

Anyway, one time, my usual doc was out, so I had to see a different one. She said she didn't believe I had PCOS, so she ordered $1500 worth of blood tests (half of which insurance didn't cover), only to conclude that, yeah, maybe I do have PCOS. My regular doc was so mad that she made me go through that and pay those extra costs.

I remember talking to my OB/GYN at the time when I first heard about PCOS, as I had almost all of the symptoms other than being overweight. He told me bluntly that he thought it was made up, I didn’t have it, he wouldn’t test. I changed doctors.

…Fast forward through confirmation testing and tens of thousands of dollars in fertility treatments and laparoscopic surgeries to drill out the cysts, and my chart has two decades of evidence that I DO in fact have “lean PCOS.” ****.

 

[cowgirl836]

This is interesting. I have a hyperthyroid (graves disease), but didn't experience what you did. It's probably because I have diabetes and routinely go to an endocrinologist and get blood taken. So I was in the right place when it happened for them to take care of it.

It's also a fun little fact that women have a much harder time being taken seriously on medical ****. The avg time to get diagnosed with pcos, endometriosis......is years. A lot of them.

 

[Angie]

It's also a fun little fact that women have a much harder time being taken seriously on medical ****. The avg time to get diagnosed with pcos, endometriosis......is years. A lot of them.

I am laughing so hard, because I had written and then edited out an entire diatribe about women’s health care that was very similar! You know it.

 

[cowgirl836]

Thyroid problems. People don't believe it can cause so many issues (weight gain and metabolism issues - just for the beginning stuff). Some doctors don't fully understand it and, instead of being willing to research or send a patient to someone that does, they dismiss concerns.

23 years ago I questioned my Dr if I was experiencing some medical/health issues with this (and a couple other things). Since I'd had problems as a young child & spent 7 years seeing specialists, I would occasionally ask for a thyroid test to check this. Doctor looks at my chart and says in a scoffing tone, "Your TSH is normal, in fact it's on the high side of the range". He wanted to prescribe Prozac to "help me deal with things". Fast forward a couple years. New doctor. I questioned the thyroid and mentioned a few other unusual for me things. Doctor runs a full thyroid panel, hormone levels, etc. Physically examines the thyroid. Thyroid panel comes back indicating Hypothyroid. Hormone levels come back indicating PCOS (Polycystic Ovarian Syndrome). She sent me to an endocrinologist. The endocrinologist, after looking at the medical records from when I was a child, was shocked I had "fallen through the cracks" for over 20 years. I've been on thyroid meds since then. Though I have a difficult time finding a doctor that understands the need to run a full thyroid panel once in a while (usually requested if I'm not feeling right), let alone know what exactly needs to be ordered for a full thyroid panel.

Going through a slice of this now. I requested a metabolic panel at my physical because I just felt sluggish and off. Maybe it's young kids, poor sleep but wanted to look into it. Vit d was low but thyroid and cbc fine. Sent on my way told im all good even though i dont feel it. Sort of on a whim I had made an appt with an integrated med person at my primary family clinic. Little crunchier than the average place. She wanted to test a few other things, specific thyroid markers, iron related even though I came back not anemic.

One of them came back almost off the chart low. It's been a month and I can feel the difference from taking iron. We're doing a cortisol/hormone panel too but....it's frustrating because she said she wanted me to get tested for what she did because she sees a lot of postpartum women with these issues. And it really should be more standard to look but it's not.

 

[FOREVERTRUE]

I remember talking to my OB/GYN at the time when I first heard about PCOS, as I had almost all of the symptoms other than being overweight. He told me bluntly that he thought it was made up, I didn’t have it, he wouldn’t test. I changed doctors.

…Fast forward through confirmation testing and tens of thousands of dollars in fertility treatments and laparoscopic surgeries to drill out the cysts, and my chart has two decades of evidence that I DO in fact have “lean PCOS.” ****.

If a doctor would have told my wife this I would have had a good story for your other Friday OT thread.

 

[carvers4math]

It's also a fun little fact that women have a much harder time being taken seriously on medical ****. The avg time to get diagnosed with pcos, endometriosis......is years. A lot of them.

Highest maternal death rate in the developed world. No one gives a crap either.

 

[FOREVERTRUE]

Luckily I am in remission now but for years I dealt with severe cluster headaches. Multiple doctors continued telling me it was allergies or migraines even after me asking if it could be cluster headaches. Finally one took it seriously and sent me to a neurosurgeon. Dealing with insurance for it was a whole other issue, but again finally I have been in remission for a couple years.

 

[carvers4math]

Relative had a gamma globulin deficiency that no one understood why he was sick

 

[cowgirl836]

Luckily I am in remission now but for years I dealt with sever cluster headaches. Multiple doctors continued telling me it was allergies or migraines even after me asking if it could be cluster headaches. Finally one took it seriously and sent me to a neurosurgeon. Dealing with insurance for it was a whole other issue, but again finally I have been in remission for a couple years.

Migraines are totally an issue that get downplayed but just so impactful to quality of life. Glad you are in remission.

 

[FOREVERTRUE]

Migraines are totally an issue that get downplayed but just so impactful to quality of life. Glad you are in remission.

There is a reason cluster headaches used to be nicknamed suicide headaches. There just seems to be no hope other than excruciating pain, and even when it is over in about an hour or hour and a half you know another will be coming in a few hours even if it is in the middle of the night and wakes you up from sleeping.

 

[ruxCYtable]

One time, on safari, I encountered a thought-to-be-extinct reasonable Hawkeye fan

Extremely rare, but they do exist. One thing that is great about moving to Colorado, not so many Hawk fans. Those I have met, however, have been super cool. Probably cuz they actually went to school there and have actual careers.

 

[KnappShack]

I was chatting with a friend who has both MS and ADHD, which has to be a hard combination when her brain wants to go-go-go, but her body can’t.

She was telling me how people have told her many times that ADHD isn’t real. Having several very close family members who have it, I can say for certain that it is - but people have opinions.

I know there are other things in this world where we know it is real, but other people doubt us. Could be medical, could be that we remember a situation vividly that others say wasn’t real. Maybe we had a crop circle in our field at one point.

This question is hard to formulate well - but what are your stories of doubters and naysayers around things you have seen or experienced?

I'll go the other way.

My hometown has the Mandela Effect cooking.

Somehow almost everyone in my parent's generation believe Paul Harvey called my hometown the "murder capitol of America"

There is zero proof he said this or that it has ever been said. Some say they heard Paul **** on the town back the 70s, 80s, and right at the end.

It's quite amazing

 

[Cyclonepride]

I don't think anyone truly understands anxiety as a condition without experiencing it themselves.