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

Thursday, December 8, 2022

Down the Rabbit Hole

I had the video appointment with the doctor today. It became apparent to me that I had not really been taken seriously. I will take part of the blame because I do stiff-upper lip things. Right from the start she asked how I am and I said the same and then some as I have been all the other times you asked. I was on the verge of tears throughout. I told her I'm going to be in a wheelchair before long and it's not right I don't know why. She did have the decency to apologize for how long it's been without answers.

I'll have lab work next week. I asked if she had the full thyroid panel ordered and it was just the TSH. I asked for the full and she ordered it but said endocrinology won't take me if the TSH is within normal.  What? I was on thyroid medication for five years until that doctor retired. After that I couldn't get the meds, I was told I didn't need it. Five years later, sixty pounds heavier, what appears to be symptoms of longterm thyroid disease and I'm told this? She said I should see a dermatologist for my hair loss. I'm at a loss.

I will get the lab work done, see what comes of it. I could go off like a rocket right now, but that doesn't help matters. I stayed civil with her although my voice was shaking. I don't know if it was tears wanting to flow or rage wanting, well, to rage. Why do I believe if I were male this wouldn't be happening to me? I told her I wanted to interact with my horses again, that I still have 14. She said that's a lot of horses and I replied I had a whole lot more. I did tell her it was annoying, if also amusing, when I have been told to get more exercise to lose weight. Do you know how much work taking care of 30-40 horses is? She didn't have a response. Why so difficult? Since my early forties I gained weight that I couldn't lose and would add more in blocks every couple of years. Finally I was diagnosed with hypothyroidism and lost a lot of weight. Off the meds, back with the weight. It also seems a body that's breaking down.

My medical mystery tour continues. I get the latest Covid booster and flu shot tomorrow. I also have a prescription for prednisone to pick up. It's an attempt to cool down some of the fire in my body being caused by inflammation. I've had prednisone before. When I told Mark about the prescription his response was you'll being going wild. Even he remembers what it has done to me in the past. I am on a high buzz. It's still worth a shot.

I could continue venting but I think I've made my point. Now it's wait and see.


14 comments:

Boud said...

I wish you could find a better doctor. Well, meanwhile lab work will happen, anyway. Let's hope you can at least get to an endo.

Sandra said...

Thank you, Boud.

Lori Skoog said...

Sounds to me like you still need the thyroid meds....but, what do I know. Can't imagine how frustrating it must be. The lab work is going to tell you something and I hope it will be soon. Don't hold back with your Doc.......

Sandra said...

Lori, I'm going Monday morning for blood work. We just got our Covid booster and flu shot this morning. I'm trying to hold my emotions until after the results are available. There is a dichotomy happening here: Mark has had quick, efficient care. I have been ignored. I am grateful for his care and at a serious loss of words for my own.

Val Ewing said...

I am somewhat at a loss for words here. She has been told that you have classic issues that relate to a thyroid issues along with several autoimmune disorders but passes it off. That certainly confuses me.
If you have MyChart messaging, I would certainly write down each and every symptom you have and send her a copy.

It has to go in your file and she Has to read it. Make it easy for her to see?
Hairloss
Weight Gain [unexplained]
Joint Pain
Depression
Muscle weakness
Fatigue

These are symptoms that need addressing for quality of life.

Hopefully I did not overstep my bounds here. However it seems like they are not taking your seriously.

Just like the nurse in the ER this summer who told my husband when he couldn't breath that he needed to eat oatmeal and lose weight. I said to her, "Yep, that is so easy to do in end Stage COPD". She apologized.

Sandra said...

A nurse said that to him? OMG!

You didn't overstep any bounds. What you see is what I see. I will go to MyChart to see what she wrote about the visit. Truly, without hyperbole, I currently haven't any quality of life. Thank you for the advice, I'll take it.

Val Ewing said...

Sandra, yes indeed she did! She gave him a short lecture on how to eat properly and he just stared at her because he wasn't following what she said.

I felt my head exploding but wanted to be nice. Clearly she had no idea why he was on 02, getting prednisone, and doing a nebulizer. Like.
Duh.

Most of the nurses at the ER know us and are much less quick to judge.

Pixie said...

If she can't figure out what is wrong with you, she needs to send you to someone who can figure it out. I hope the bloodwork shows up something.

https://www.verywellhealth.com/tsh-test-results-normal-symptoms-3233014

https://www.medicalnewstoday.com/articles/hypothyroidism-with-normal-tsh#is-it-possible

Some ammo for you.

Sandra said...

Val, I have learned to keep an open mind, realizing we have no idea what is happening in others lives. I had a horse trainer with a rare condition that kept her from gaining weight. It was terrible. Looking at her it would be easy to believe she had an eating disorder, which is an illness but can be judged. She at all things all the time. It actually was hard for her.

You did humble her. She needed that.

Sandra said...

Thank you so much, Pixie. I really appreciate your expertise. I will put those links in my phone and look at them.

Beatrice P. Boyd said...

I rather agree with what Boud said earlier on, Sandra, that perhaps it is time to seek another medical professional who will pay attention a bit more. We have not seen an MD in years for primary care but instead our primary care is done by a nurse practitioner. It seems to us that more time is taken and more listening is done as well.

Sandra said...

Beatrice, Mark sees an NP and thinks she hung the moon. I'll see what happens after the lab work.

Far Side of Fifty said...

Hope the lab work gets you some answers. Your symptoms are much like mine...hair loss, fatigue, gradual weight gain, joint and muscle aches. However I am not depressed ...well maybe a little after the last bout of Lymes...I hope to get an appt with a DR that specializes in Lymes. I have had residual lymes problems since 2006 from being undiagnosed. Then I had it agin in 2013, and again this summer.
We all need answers.

Sandra said...

Far Side, I never thought of Lymes. I have been depressed as long as I can remember. It ramped up after I had a brain injury in 2011. I don't see the depression as part of this, other than it's depressing to be this way.