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Should I keep follow-up appt with endo?

Mary

Moderator Resource
Messages
17,290
Location
Southern California
Several weeks ago I saw an endocrinologist for the first time - first time seeing this doctor and first time seeing an endo period. I wanted to talk to him about my low phosphorous issues. I brought some research and printouts re ME/CFS. It was a complete flop. He wouldn't listen to me or look at anything I brought. He determined that all my symptoms were due to stress, etc. I tried to explain about refeeding syndrome and thiamine and phosphorous and you can imagine how well that went. He said I did not have refeeding syndrome (I'm about 20 pounds overweight) and that RS happened to people in Auschwitz - not people like me. Right. Didn't even get close to telling him about all the potassium I have to take.

Okay. In the end, he ordered some basic blood work which I had done. I got the results, Quest sent them to me, and everything looks fine. I'm supposed to have a follow-up to go over the results with this guy, but there's no way I would want to continue seeing him. Again, the phosphorous issue was the only reason I went and I never was able to get to a point where I could even talk about potential phosphate diabetes etc. Oh, and he cautioned me about all the supplements and vitamins I take - that was a rookie mistake, bringing a list of everything. He just assumed that because I take so much stuff, some of it must be bad for me.

So can anyone think of any reason I should even bother to go back to see him to go over my test results? My instinctual politeness says I should go, but I doubt he would care if he ever saw me again.

Plus it's a one-hour drive, and I had over an hour wait before I got in to see him last time. Anyways, I ended up crashing after the appointment - ironic, isn't it? :aghhh:
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I always share the list of what I'm taking, they may as well know. If they can't deal with it, I know I'm in the wrong place...:bang-head: I've found dividing the list into functions is helpful, though: immune support, mitochondrial sypport, hormones, etc.

I stopped around for an endo a while back. Wanted to figure out why my bones seen to be slowly dissolving and my body is using calcium oddly... So, I shopped around for ine who specializes in bones rather than diabetes.

It was a huge disappointment. He zeroed in on my TSH <.01 couldn't understand my thyroid dosing, even though my FT3 and FT4 were low mid-range and I had high antibodies, couldn't discuss or test all the other components of bone breakdown or formation, and ordered an ACTH stim test which I slept through, he said was normal, and my ME/CFS specialist and patients here all said was abnormal, then tried to force me onto 1/3 of my thyroid dose. All this, even though I took research articles, diagrams of bone variables, and articles on ME/CFS and HPA axis and thyroid. And he was supposed to think differently...

I'd say your experience was as useless as mine. No use in being polite unless you think you will ever want to see him again in the future. If so, be polite and go.

I looked up low phosphorous. It sounds worrisome. How are your vitamin D and electrolyte levels and parathyroid hormone?
 

Mary

Moderator Resource
Messages
17,290
Location
Southern California
Thanks @andy Pandy! My appointment is this Wednesday and I realized today I don't want to crash right before Christmas if I can help it, and for the first time I begin to think of just canceling altogether instead of rescheduling. The more I think of it, the more it seems like a good idea just not to go. I appreciate your input! :)
 

Mary

Moderator Resource
Messages
17,290
Location
Southern California
I looked up low phosphorous. It sounds worrisome. How are your vitamin D and electrolyte levels and parathyroid hormone?
My vitamin D is good, electrolytes are good - I stay on top of them. I think parathyroid hormone is okay, but may look into that the next time I see a doctor. It's never been flagged though.

The phosphorous issue first arose (that I was aware of) a couple of years ago when I started taking thiamine. It gave me an initial very nice boost in energy, and then a day or 2 later I was hit with severe fatigue (not a crash). It was similar to what happened when my potassium tanked after I started taking methylfolate. So my first thought was refeeding syndrome, the thiamine depleted something, and it wasn't potassium - the symptoms were different (no muscle cramps or twitching) and it just felt different. Plus potassium did nothing for this fatigue.

My reading into refeeding syndrome - which is why I tried to bring it up with the doctor - said that hypophosphatemia is the hallmark of refeeding syndrome. So I looked up foods high in phosphorous and also read about low phosphorous, which can cause severe fatigue and also problems with bones (!) (you might look into it yourself) - anyways, I ended up drinking several glasses of kefir, dairy is high in phosphorous, and within a few hours the fatigue started to dissipate. Eventually I got a phosphorous supplement, ran it by my doctor at the time who actually listened to me (who unfortunately for, and him, died a few years ago), and started taking a low dose of monosodium phosphate ever couple of days. And it's worked. A couple of times I've slacked off for over week, and then an unusual fatigue hits again and I realize it's my phosphorous and go back on it.

There's something called phosphate diabetes which is supposed to affect some 10% of ME/CFS patients (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2360873/) and I wanted the endo to check for this - and I believe it involves testing other than regular blood work but I never even got a chance to tell him about this.

And in general on blood work my phosphorous levels look okay, just like my potassium always looks okay, albeit on the low side of normal. But if I don't keep up with my potassium supplementation, I get symptoms very quickly. I'm sure you've seen Richvank's post on why persons with ME/CFS are prone to low intracellular potassium despite normal blood levels (https://forums.phoenixrising.me/ind...ded-in-methylation-treatmt.18670/#post-291422)

Maybe I need an intracellular phosphate test, if there is such a thing?
 

Mary

Moderator Resource
Messages
17,290
Location
Southern California
@Mary do you like and can you tolerate avocados?
I love them! (pricey though!)

BTW, I canceled the appointment this morning - whew! But I am going to write him a letter telling him why, and I will enclose a copy of the study about the 2-day exercise stress test and ME/CFS- maybe he'll learn something - probably not but you never know :p
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Several weeks ago I saw an endocrinologist for the first time - first time seeing this doctor and first time seeing an endo period. I wanted to talk to him about my low phosphorous issues. I brought some research and printouts re ME/CFS. It was a complete flop. He wouldn't listen to me or look at anything I brought. He determined that all my symptoms were due to stress, etc. I tried to explain about refeeding syndrome and thiamine and phosphorous and you can imagine how well that went. He said I did not have refeeding syndrome (I'm about 20 pounds overweight) and that RS happened to people in Auschwitz - not people like me. Right. Didn't even get close to telling him about all the potassium I have to take.

Okay. In the end, he ordered some basic blood work which I had done. I got the results, Quest sent them to me, and everything looks fine. I'm supposed to have a follow-up to go over the results with this guy, but there's no way I would want to continue seeing him. Again, the phosphorous issue was the only reason I went and I never was able to get to a point where I could even talk about potential phosphate diabetes etc. Oh, and he cautioned me about all the supplements and vitamins I take - that was a rookie mistake, bringing a list of everything. He just assumed that because I take so much stuff, some of it must be bad for me.

So can anyone think of any reason I should even bother to go back to see him to go over my test results? My instinctual politeness says I should go, but I doubt he would care if he ever saw me again.

Plus it's a one-hour drive, and I had over an hour wait before I got in to see him last time. Anyways, I ended up crashing after the appointment - ironic, isn't it? :aghhh:
I can't see the point in going over results with him @Mary At least you have the bloodwork results (and copies for yourself?) So you could take those anywhere. Hopefully to another doctor? Those appointments do you no good. Going to someone who listened would at least be worth the crash.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
I too, couldn't think of any reason , for you to go to that appointment or any other one, with that person, who showed no promise of being helpful for you, @Mary

"Polite" is to cancel in advance, was my reaction.

I like the idea of mailing him info, perhaps a different educational article weekly? ;):D

You could mail copies to his staff, also? :thumbsup:

I also liked the idea of @jesse's mom possibly mailing you, or some of us, some avocado's, but it seems she is not willing or enthusiastic enough, to do so. :p:rofl:
Some excuse she gave. :rolleyes::D

But perhaps you and she and some of the rest of us, might like to mail some, and other fruits or veggies to that endo doc, you were hoping would be helpful? :lol::_
 
Messages
64
hi mary. so sorry you had such a bad experience. but i would not have brought up "phospherous" nor refeeding syndrome with a conventional doctor. maybe you would have had better luck and compassion with a functional doctor.
joanie
 

Mary

Moderator Resource
Messages
17,290
Location
Southern California
hi mary. so sorry you had such a bad experience. but i would not have brought up "phospherous" nor refeeding syndrome with a conventional doctor. maybe you would have had better luck and compassion with a functional doctor.
joanie
I totally agree about a functional medicine doctor. It's just there are none where I live and it's really a hike for me to get to one; plus almost none of them take Medicare. And I assumed (wrongly!) that an endocrinologist was the proper doctor to see about possible problems with phosphorous. I'd never seen one before, I assumed he would have a little bit of curiosity . . .