Everything sublime is as difficult as it is rare. Baruch Spinoza

Monday, December 5, 2022


I received this email from the Mayo Clinic on November 18th. It upset me and put me into a depressive nosedive for a couple of weeks. I have finally pulled out of it, but I am not pleased with Mayo. It feels dismissive. I have made an appointment with Park Nicollet's neurology department and followed the advice given to me here to go on the cancellation list. My appointment is at the end of April. We get our booster and flu shots on Friday. I'm making an appointment to see my primary in person the following week. I'm going to give her one more shot at listening to me. About two weeks ago my hair started falling out. In a weeks time my scalp became visible, and I had a lot of hair. This isn't right. I'm weak and terribly fatigued. It's as if I don't matter. I will ask for a referral to an endocrinologist, which will probably be available in August. I was on thyroid medication for several years. The doctor retired and no doctor would prescribe it because they felt I didn't need it. But.....I was prescribed Ozempic, a diabetes medication, for weight loss. Doesn't that lower blood sugar and can't that be dangerous? Rhetorical question. I didn't get the medication because insurance wouldn't pay for it and it costs, wait for it, $1007/mo. I wasn't comfortable about using it anyway. I found that Medicare will not pay for any weight loss medication or any eating disorder treatment. They'd rather pay for the resulting consequences.

So, remember the song by Crosby, Stills & Nash with the line I almost cut my hair ? I did cut my hair, about 11". Long, stringy grey hair is not lovely. Good thing I don't have any attachment to how long my hair is, but going bald hasn't been on my bucket list.

I'll end this not-on-the-bright-side tale with the observation that we have a very messed up system of care and delivery of healthcare services. Yet, Mark is getting proper care. He says it's because what is wrong with me doesn't have an obvious reason, like cancer that can be detected. It's easier to just set me aside. I know he's right.

We appreciate the confidence you have expressed in Mayo Clinic and thank you for your recent request.


The Division of General Internal Medicine, Minnesota has received your information. Unfortunately, demand for our health care services exceeds our capacity. We have thoroughly reviewed your provided materials to determine if we can add further value or treatment options to your care. Unfortunately, we are unable to offer you an appointment at this time. Please know decisions like this are not easy, Mayo Clinic strives to provide the best care possible to all of those in need.


This e-mail was automatically generated from a non-response mailbox. Please do not reply to this email. 


Val Ewing said...

Oh...Sh*t. I'd have had a cow. So does that email say that your appt in April is not going to happen too?

Our medical delivery system IS messed up. It must then be up to your PCP to investigate and find a DX that will move you to the front of the line so to speak.
The hair loss is a huge red flag. You probably know that. Why don't they do a full blood panel work up?
I'm just thinking out loud because I get one every other year and if there is a need for one, I get one.

Mark is absolutely right. It isn't obvious and it seems like some doctors don't want to dig in to it.
Of course staffing now is a huge issue.

Thankfully, we live in an area that is attracting doctors and nurses.

My blood pressure would be through the roof.

I'm so sorry, hope you get that appointment and proper tests.

Sandra said...

Val, I was deeply upset, which sent me to the depression pit. I just have to wait until it lifts. It has so I can now talk about it. The April appt is with a different clinic, were I go for care. I became more upset because my DILs brother had undiagnosed symptoms that almost exactly mirrored mine and the Mayo took him. This was just a few months ago.

Hair loss is a big concern. I have enough issues happening at once I would think I would't be dismissed. Seeing a woman doctor hasn't helped like I hoped it would. Thanks for venting with me.

Boud said...

I think places like mayo are more interested in research and patients with "interesting" situations. Possibly they didn't want more patients since the bil filled their need for those symptoms. I sound cynical because I have observed how doctors don't like patients to have chronic symptoms which they can't triumphantly resolve.

Medicare itself is only geared for resolvable situations. When my late husband needed physio just to prevent further mobility loss, the doctors and I had to come up with ways of expressing treatment that indicated improvement, when it was impossible. I helped them word it in such a way that some form of improvement might happen, so he got the care.

Val Ewing said...

Boud, that is the secret. You nailed it, the doctors need to get creative and not all of them want to.
When I was a medical coder, I'd have to find codes that encompassed and suggested treatments that could be ordered and paid for or at least partially paid for.

Good point.

Sandra said...

Boud, Mark has been saying the same thing. If it's not readily diagnosable they'd rather you move on. It's been two years and getting worse.

I made an appointment, again. I couldn't get in until 1/3. I guess we have to be creative thinkers to get care.

Sandra said...

Val, Boud knows a lot! I am feeling more bitchy than creative, let me tell you.

Val Ewing said...

Sandra...yes she does! I get where you are coming from.

Sandra said...

Val, both you and Boud have been down this long, winding trail.

Pixie said...

That email from the Mayo is a slap in the face, especially because it's an automatic reply and can't be responded to. So much for the Mayo being so great.

Mark is probably partially right but women's problems tend to be ignored much longer than men's problem.

Take a look at this, see if it sounds like you.


Anonymous said...

Your situation is horrid as well as heart wrenching. I do not have the words to express my outrage for your situation. The medical care in this country falls short for too many people. Appropriate medical care is a RIGHT..not privilege.
I wish I could make things better for you.
Take Care,

Sandra said...

Pixie, it really was dismissive, like I am not worthy. I know I'm not taken seriously because of gender, age and weight. When there is no easy answer they tend to revert to that.

Yes, it does sound like me. I'm going to attempt getting a referral to an endo.

Sandra said...

Awww, thank you Kaye. I used to believe we would join the rest of the world in seeing healthcare as a right, but I am not hopeful. Not in my lifetime, anyway. I can't give up, which I have done a few times. But I snap out of it.
Thank you for caring.❤️

37paddington said...

Honestly, the hair loss could be thyroid issues, possibly low thyroid, given that you're also fatigued. It's a serious issue. I am hypothyroid and was under medicated for it the other day because my doctor reduced my dosage, and I KNEW it was too low, my body knew, but she kept saying but the tests said, turns out biotin and other things can skew the tests etc. Anyway I went to an endocrinologist who set things right and it was like magic, the way I reverted to normal. When I was under meidcated my hair began to think and I was so tired and depressed I became (secretly) suicidal. That terrified me. I urge you to see an endocrinologist who deals with thyroid as GPs don't really know the ins and out of proper dosage. My doctor is pretty good overall, but on this, she utterly failed me.

Sandra said...

I know thyroid is the place to start for sure, paddington. I think I could like this doctor if all I needed her for is general ailments. She has completely let me down with this. I feel I have a fine line to walk because I have been labeled difficult. I want help, not a fight. But, I'm not getting the help. I read her notes after the last appt. It read slightly condescending to me. I can't be sure if it was or if I just read that into it.

Far Side of Fifty said...

I hope you get the help and understanding that you need. It is hard to find a really good Dr now a days.
So is Mayo saying there is no need for care? I would be angry and sad...and then pissed off. I thought they took everyone with a health problem. Buggers

Sandra said...

Far Side, so did I. They took my son's bil with symptoms very like mine. I was so angry I couldn't say anything about it.

Bohemian said...

I hate dismissive Medical Providers, I've been fortunate to change Docs immediately anytime I don't like one I've had. I had a Diabetic Specialist that was doing me no good and felt inept. I'm currently just seeing a Nurse Practitioner more on top of her Game, my Insurances cover her 100% with no co-pays necessary and she got the Diabetes stabilized and my A1C down to normal levels, plus I'm losing a lot of weight. I'm on Trulicity and like it, tho' I have to couple it with Lantus it's reducing my need for that injectable and I had Hair Loss initially too, which is why I got Dreadlocks. I'd always wanted them anyway and thought, what the Hell, I'll try anything to attempt to keep some Hair. I never had thick Hair, now I do and it's lots Healthier and grows like a Weed plus came in darker, replacing Greying Hairs with my more Youthful Color, its weird but it's worked. It was an Old Rastafarian's Advice and I'm forever indebted, Love my Hair now for the first time in my Life and it's finally low maintenance. Not that I'm trying to convince you to get Locs my Friend, but there are viable solutions to the Hair Loss dilemma and I hope you do find one becoz it is depressing to have illness that is chronic, weight gain that isn't controlled, AND then have your fucking Hair fall out. Virtual Hugs.

Sandra said...

I love the last sentence, Dawn! I should read it to the doctor! Thank you.