starlily88
Senior Member
- Messages
- 497
- Location
- Baltimore MD
My name is starlily88. I have been on here with previous post on how Prednisone "cured" my brain fog, temperature, etc. This was temporary.
I have been quite ill since March 21, 2018 - on top of my ME/CFS. Symptoms include high temperature every day, thyroid or lower neck very swollen - very painful each l day, pain when swallowing, terrible sore throat (almost like it is past my larynx. Deep "cough" that ends up wheezing, now it is non-stop non productive cough/wheezing, bad left ear ache all day/ nite. Now quite dehydrated - shortage in ER hospitals - been to ER 2 times - can barely stand/walk without loosing my breath. I feel like I am being strangled, no oxygen.
I saw my Internist end of March - had fever - put me on antibiotics
Saw my Endocrinologist April 9th - said my thyroid was so swollen, probably infected..
Would not run full thyroid panel, refused to order thyroid ultrasound (shows nothing he says).
Ordered no blood tests.
I insisted on Full thyroid panel test, and Iron panel. He sent me scripts including Interleukin-6 Sensitive, Iron panel, Thyroid panel, Sedimentation rate, etc.
Had labs done May 15, 2018. My ENDO never read them - office told me he hasn't read labs from one month ago on his patients- as if this exonerates him!!
II begged his assistant to ask him to read my blood labs.
I had results emailed to me. My results were not good.
I have no IRON, Interleukin-6 so high,thyroid results bad.My sed rate is the highest it has been in 30 years - the interleukin - 6 is so high.
My ENDO said I can't be on Thyroid meds - they will 'leak"
Endo says go on beta blocker Atenolol 25 mg day. Said I have thyroiditis (yes have had this 15 years).
Endo says "you will be sick with this infection for another year"
Atenolol will slow heart rate - and make you extremely tired. (his words not mine)
My Dr neighbor had to get me up to my flat a week ago - I have been homebound but had to go to dentist (after my dentist told me I had cavity on tooth that was already filled 3 sides in Sept 2017). I was very weak.
I could not walk 4 steps without loosing breath, I could not open door to my building - so sat there till my neighbor came home from work.
He told me there is no medical word for LEAKING. He laughed - said my ENDO just wanted me to stop asking questions - he says 99% of patients NEVER ask question to their drs.
He said never heard of beta blocker curing thyroidis - and me being on High blood pressure medicine (given to me by my Endo) combined with beta blocker would drop my blood pressure so low I would be in possible danger as my blood pressure is pretty low. (90/60 or 90/70). (on my blood meds only). He doubled dose.
I made appt with practice near me months ago because my cousin told me his friend started practice, and was excellent. They don't accept my insurance but I am desperate. She won't accept new patients
Only 3 drs would accept new patient so I grabbed this. He is Internist/Endocrinologist.
Since I have no memory - I wrote down my 6 symptoms.
I brought out a tiny piece of paper. He objected, "no no put your paper away, do this from your memory"
I told him I don't have memory which made him even angrier.. He freaked out on how I can't remember the dates my weight was 99 lbs - which was about 25 years ago for 4/5 years. I am now 105 lbs so who cares. He asked this question so many times - I thought I was in a court room
He remarked that he needed a "PhD to handle my medical problems" even though I did not divulge every detail of my long disease list except the most important. I stuck to last 3 months.
He was nasty to me - even though I did not talk, expound, and answered his questions as best as I could. Then when he found out I had had breast cancer 19 years ago (lumpectomy, no chemo, no radiation) he almost had heart attack, and yelled at me - like I was withholding.
He wanted to know how much of this I found on the internet which is zero.
But he did say some things no other dr would say or do.
.
He questioned why not one dr who saw that Prednisone worked to fix me - did not proceed to test my cortisone levels - this puzzled him greatly. Now this can mean absolutely nothing because we all know that Prednisone (raising cortisol levels, getting inflammation down) works for first time.
He thought about " I wonder if this is extension of your ME - getting worse" which is viable.
He immediately ordered an ACTH test for this Wednesday at lab in his office. I know this won't show anything - and this is not cure for CFS.............
But then he stated that if "you do NOT bring me the 4 drs evaluations you saw I will NOT proceed with further medical work on you. I told him my Internist of 25 yrs stopped all medicare patients on April 1st but HE did give me DVD of all my records.
He told me "No I will NOT take the DVD - I am not going thru all your records. You have to call him".
I can't call this guy - he wants $1600.00/year from Medicare patients to treat them.
He stated if all 4 drs did not give him my last evaluation in last 3 months - he would not go ahead with medical help -= I am shocked at this.
I did call 3 drs - had them email last evaluation - but my computer broke for a week.
It would not download anything.
I will take ACTH test this Wednesday. Beyond this, no matter what it shows, it will not answer what my new symptoms are from.
I have been to 2 ERs - one gave me chest x-ray - said nothing wrong with you.
Second ER - nope you can't have saline, only did chest x-ray told me to go home.
I have no hope, have exhausted my options, and have nowhere to go from here.
Please anyone advise me on what to do. I did call Johns Hopkins for any internist or any ENDO, long ago.
First appt I could get is July 5th 2018. I called March 31, 2018.
Thank you guys for always having my back
Starlily88
I have been quite ill since March 21, 2018 - on top of my ME/CFS. Symptoms include high temperature every day, thyroid or lower neck very swollen - very painful each l day, pain when swallowing, terrible sore throat (almost like it is past my larynx. Deep "cough" that ends up wheezing, now it is non-stop non productive cough/wheezing, bad left ear ache all day/ nite. Now quite dehydrated - shortage in ER hospitals - been to ER 2 times - can barely stand/walk without loosing my breath. I feel like I am being strangled, no oxygen.
I saw my Internist end of March - had fever - put me on antibiotics
Saw my Endocrinologist April 9th - said my thyroid was so swollen, probably infected..
Would not run full thyroid panel, refused to order thyroid ultrasound (shows nothing he says).
Ordered no blood tests.
I insisted on Full thyroid panel test, and Iron panel. He sent me scripts including Interleukin-6 Sensitive, Iron panel, Thyroid panel, Sedimentation rate, etc.
Had labs done May 15, 2018. My ENDO never read them - office told me he hasn't read labs from one month ago on his patients- as if this exonerates him!!
II begged his assistant to ask him to read my blood labs.
I had results emailed to me. My results were not good.
I have no IRON, Interleukin-6 so high,thyroid results bad.My sed rate is the highest it has been in 30 years - the interleukin - 6 is so high.
My ENDO said I can't be on Thyroid meds - they will 'leak"
Endo says go on beta blocker Atenolol 25 mg day. Said I have thyroiditis (yes have had this 15 years).
Endo says "you will be sick with this infection for another year"
Atenolol will slow heart rate - and make you extremely tired. (his words not mine)
My Dr neighbor had to get me up to my flat a week ago - I have been homebound but had to go to dentist (after my dentist told me I had cavity on tooth that was already filled 3 sides in Sept 2017). I was very weak.
I could not walk 4 steps without loosing breath, I could not open door to my building - so sat there till my neighbor came home from work.
He told me there is no medical word for LEAKING. He laughed - said my ENDO just wanted me to stop asking questions - he says 99% of patients NEVER ask question to their drs.
He said never heard of beta blocker curing thyroidis - and me being on High blood pressure medicine (given to me by my Endo) combined with beta blocker would drop my blood pressure so low I would be in possible danger as my blood pressure is pretty low. (90/60 or 90/70). (on my blood meds only). He doubled dose.
I made appt with practice near me months ago because my cousin told me his friend started practice, and was excellent. They don't accept my insurance but I am desperate. She won't accept new patients
Only 3 drs would accept new patient so I grabbed this. He is Internist/Endocrinologist.
Since I have no memory - I wrote down my 6 symptoms.
I brought out a tiny piece of paper. He objected, "no no put your paper away, do this from your memory"
I told him I don't have memory which made him even angrier.. He freaked out on how I can't remember the dates my weight was 99 lbs - which was about 25 years ago for 4/5 years. I am now 105 lbs so who cares. He asked this question so many times - I thought I was in a court room
He remarked that he needed a "PhD to handle my medical problems" even though I did not divulge every detail of my long disease list except the most important. I stuck to last 3 months.
He was nasty to me - even though I did not talk, expound, and answered his questions as best as I could. Then when he found out I had had breast cancer 19 years ago (lumpectomy, no chemo, no radiation) he almost had heart attack, and yelled at me - like I was withholding.
He wanted to know how much of this I found on the internet which is zero.
But he did say some things no other dr would say or do.
.
He questioned why not one dr who saw that Prednisone worked to fix me - did not proceed to test my cortisone levels - this puzzled him greatly. Now this can mean absolutely nothing because we all know that Prednisone (raising cortisol levels, getting inflammation down) works for first time.
He thought about " I wonder if this is extension of your ME - getting worse" which is viable.
He immediately ordered an ACTH test for this Wednesday at lab in his office. I know this won't show anything - and this is not cure for CFS.............
But then he stated that if "you do NOT bring me the 4 drs evaluations you saw I will NOT proceed with further medical work on you. I told him my Internist of 25 yrs stopped all medicare patients on April 1st but HE did give me DVD of all my records.
He told me "No I will NOT take the DVD - I am not going thru all your records. You have to call him".
I can't call this guy - he wants $1600.00/year from Medicare patients to treat them.
He stated if all 4 drs did not give him my last evaluation in last 3 months - he would not go ahead with medical help -= I am shocked at this.
I did call 3 drs - had them email last evaluation - but my computer broke for a week.
It would not download anything.
I will take ACTH test this Wednesday. Beyond this, no matter what it shows, it will not answer what my new symptoms are from.
I have been to 2 ERs - one gave me chest x-ray - said nothing wrong with you.
Second ER - nope you can't have saline, only did chest x-ray told me to go home.
I have no hope, have exhausted my options, and have nowhere to go from here.
Please anyone advise me on what to do. I did call Johns Hopkins for any internist or any ENDO, long ago.
First appt I could get is July 5th 2018. I called March 31, 2018.
Thank you guys for always having my back
Starlily88