How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

[mrquasar]

I am glad you are going back to get your thyroid levels re-tested. Since you're still on a blood-pressure medication, I honestly would not recommend the beta-blocker just for the insomnia. Not sleeping is horrible I know but I don't want you to have a low-blood pressure episode over it.

Have you tried any sleeping aids? The ones that have worked for me in the past are melatonin, benadryl, and doxylamine (Unisom). Of course, be sure to make sure none of them interact with whatever other meds you're on before taking them.

I'm sorry you're going through this! Please keep hanging in there. Take care.

 

[mrquasar]

I am glad you are going back to get your thyroid levels re-tested. Since you're still on a blood-pressure medication, I honestly would not recommend the beta-blocker just for the insomnia. Not sleeping is horrible I know but I don't want you to have a low-blood pressure episode over it.

Have you tried any sleeping aids? The ones that have worked for me in the past are melatonin, benadryl, and doxylamine (Unisom). Of course, be sure to make sure none of them interact with whatever other meds you're on before taking them.

I'm sorry you're going through this! Please keep hanging in there. Take care.

 

[starlily88]

I'm sorry to hear of all you are going through. I can't help with much, except I have asthma. Were you put on a maintenance inhaler? Do you have a rescue inhaler? A nebulizer? Prescription asthma / allergy med taken nightly (Singulair)?

Force e Honra a beautiful picture. Excactly 2 years ago this same Endocrinologist gave me ProAir HFA - a rescue inhaler I think. I coughed so much when temperatures dipped low. My Internist gave me great Extender.

In October 2017 I was sent to ER - couldn't catch my breath, kept coughing - Internist told me to go.
ER doc put Mask on me, and administered medicine inside. I also had shingles on left arm/hand, broken toe.
He told me I had Asthma - go to Pulmonologist to see what kind I have. Unfortunately I had big dental surgery right after the ER, and then in December too - hard surgeries so I cancelled.

I have tried it few times now - but ENDO said it is not asthma - but I am pretty sure it is, my brother has it, my Mom had it. I sneeze so hard each nite - like about 5 times I get whiplash

 

[starlily88]

I am glad you are going back to get your thyroid levels re-tested. Since you're still on a blood-pressure medication, I honestly would not recommend the beta-blocker just for the insomnia. Not sleeping is horrible I know but I don't want you to have a low-blood pressure episode over it.

Have you tried any sleeping aids? The ones that have worked for me in the past are melatonin, benadryl, and doxylamine (Unisom). Of course, be sure to make sure none of them interact with whatever other meds you're on before taking them.

I'm sorry you're going through this! Please keep hanging in there. Take care.

I have very bad insomnia so my Neurologist put me on muscle relaxers - which I keep to a minimum.
They work better when I haven't slept in days.

So surprised you are glad to repeat thyroid levels - so at least this will not be a waste, thanks for the advice.

 

[StarChild56]

Force e Honra a beautiful picture. Excactly 2 years ago this same Endocrinologist gave me ProAir HFA - a rescue inhaler I think. I coughed so much when temperatures dipped low. My Internist gave me great Extender.

In October 2017 I was sent to ER - couldn't catch my breath, kept coughing - Internist told me to go.
ER doc put Mask on me, and administered medicine inside. I also had shingles on left arm/hand, broken toe.
He told me I had Asthma - go to Pulmonologist to see what kind I have. Unfortunately I had big dental surgery right after the ER, and then in December too - hard surgeries so I cancelled.

I have tried it few times now - but ENDO said it is not asthma - but I am pretty sure it is, my brother has it, my Mom had it. I sneeze so hard each nite - like about 5 times I get whiplash

Poor thing! Yes, it does sound like asthma and allergies. I wonder why your endo says it is not asthma? The mask with the medicine is a nebulizer (IME). Did it help you breathe better?

Yes, ProAir is a rescue inhaler. Does it help your breathing?

I hope you are able to get to the pulmonologist soon. Have you ever taken zyrtec? (Sneezing, maybe allergies?). I take zyrtec as well as a prescription asthma/allergy med every night. Nose spray, too (for allergies). Not being able to breathe is a big deal.

I also of course hope you get sleep, rest and the thyroid stuff all straightened out. And some nice, competent and helpful doctors. I'm really sorry for all you've been through. My primary care doctor recently almost made me cry and it was quite disturbing. You are sick, powerless and vulnerable - and someone in a position of power acting in a rude and unhelpful/adversarial manner is the very last thing you need.

Take care.

 

[StarChild56]

Oh and the picture - my avi I assume? - it is Amy Lee of Evenescence. One of my faves.

 

[starlily88]

Oh @starlily88 , I can't believe how badly your doctors speak to you. I hate to think of you stuck outside your apartment unable to get in without help and I want to phone up all your doctors and tell them off. I can't offer any advice as i don't know anything about thyroid problems but heres a virtual hug. i am so grateful to just have the one chronic health condition.

Thanks so much. My internist was always very kind, empathetic. He wrote practically any script I needed. He saw me in emergency migraines - put lidocaine shots in my neck. My Endo has always been nice - but when he remarried, adopted her 4 kids, then had triplets - he was zoned out for long time. But I am very surprised at how non-concerned he is - but this is when you see people for real - when there is an emergency.
My Internist would jump in with both feet for me - he loved the challenge. My ENDO is slow energy, I am high energy.

The new ENDO is much older, grumpy - and going to a new dr is very hard with chronic autoimmune disease.
Drs like to see all patients as Horses - then a Zebra walks in - they either run for the hills or grab the zebra.

Virtual hug back at you Starlily88

 

[starlily88]

Poor thing! Yes, it does sound like asthma and allergies. I wonder why your endo says it is not asthma? The mask with the medicine is a nebulizer (IME). Did it help you breathe better?

Yes, ProAir is a rescue inhaler. Does it help your breathing?

I hope you are able to get to the pulmonologist soon. Have you ever taken zyrtec? (Sneezing, maybe allergies?). I take zyrtec as well as a prescription asthma/allergy med every night. Nose spray, too (for allergies). Not being able to breathe is a big deal.

I also of course hope you get sleep, rest and the thyroid stuff all straightened out. And some nice, competent and helpful doctors. I'm really sorry for all you've been through. My primary care doctor recently almost made me cry and it was quite disturbing. You are sick, powerless and vulnerable - and someone in a position of power acting in a rude and unhelpful/adversarial manner is the very last thing you need.

Take care.

Yes I have had allergies, sinus infections my whole life, lived down Hopkins. I do a nasal spray Nasalide - with steroids. Do netty pot. I take 12 hr Claritin-D sparingly (HBP).
My sinuses are hurting me now - I had sinus surgery 9 years ago - to clean out stuff grew in with repeated infections.

The Mask in ER was like a miracle to me! I was totally not coughing.
With the rescue inhaler - it makes my heart race so I don't like it. I think he said it is not asthma because he seemed overwhelmed at how swollen my thyroid/neck was.

I didn't know there was an asthma/allergy medicine - I would love that! I have generic anti-histimine, not as good as Claritin - D.

In offfice of mean dr - I told him about the asthma - he was nice about this - wanted me to see the pulmonologist in their office - so that is great! I only had this allergy coughing in spring/fall. Now it is year round.
I use the nasal spray sparingly - afraid of rebound effect.

 

[starlily88]

My primary care doctor recently almost made me cry and it was quite disturbing. You are sick, powerless and vulnerable - and someone in a position of power acting in a rude and unhelpful/adversarial manner is the very last thing you need.

So sorry your primary care doc made you so upset - it is unacceptable for anyone in power to do this. Like he is Lord of the Manor. #MeToo

 

[StarChild56]

Yes I have had allergies, sinus infections my whole life, lived down Hopkins. I do a nasal spray Nasalide - with steroids. Do netty pot. I take 12 hr Claritin-D sparingly (HBP).
My sinuses are hurting me now - I had sinus surgery 9 years ago - to clean out stuff grew in with repeated infections.

The Mask in ER was like a miracle to me! I was totally not coughing.
With the rescue inhaler - it makes my heart race so I don't like it. I think he said it is not asthma because he seemed overwhelmed at how swollen my thyroid/neck was.

I didn't know there was an asthma/allergy medicine - I would love that! I have generic anti-histimine, not as good as Claritin - D.

In offfice of mean dr - I told him about the asthma - he was nice about this - wanted me to see the pulmonologist in their office - so that is great! I only had this allergy coughing in spring/fall. Now it is year round.
I use the nasal spray sparingly - afraid of rebound effect.

Yes, the nebulizer treatment is very effective.

Yes, rescue inhaler can make your heart race but if you use it a lot, for me at least - I no longer get that reaction. If I don't use for a long time, the first time I use it it will happen. If your asthma is well controlled, you should not need rescue inhaler more than once per week.

The prescription allergy/asthma med is called Singulair. It helps. But I still have to take a zyrtec, year round. And I use flonase prescription nose spray in spring/summer.j

Ugh sorry about the sinuses. I used to get sinus infections somewhat regularly.

 

[StarChild56]

So sorry your primary care doc made you so upset - it is unacceptable for anyone in power to do this. Like he is Lord of the Manor. #MeToo

Thank you. I switched to a female doctor. He is also the medical director and I wanted to make sure I did not anger him so I stated I thought I'd be more comfortable with a female doctor when they asked why I wanted to switch.

 

[Wishful]

@starlily88 , you aren't actually allergic to iodine; you are allergic to the iodine compound they use. Google allergic iodine to find more information. You should know about that, and how to explain it to your doctor.

 

[starlily88]

Thank you. I switched to a female doctor. He is also the medical director and I wanted to make sure I did not anger him so I stated I thought I'd be more comfortable with a female doctor when they asked why I wanted to switch.

Force Honra - good move to female dr. To leave a dr - to go to another one in same practice - hard!
Great excuse - more comfortable with female doc.

Due to your post - I worked on my sinuses/allergy last nite. Just get too lazy. I did everything I have.
My head was pounding from my sinus pain - and I can hardly breathe. so it helped a lot. Massaged them also.

 

[starlily88]

@starlily88 , you aren't actually allergic to iodine; you are allergic to the iodine compound they use. Google allergic iodine to find more information. You should know about that, and how to explain it to your doctor.

Thanks Wishful. it happened when I ate huge shrimp Nicola. Then sat in sun
next day. There is a synergistic relationship with the iodine in big shrimp and sun.

This made my face, eyes, throat swell- so big I had to wear sunglasses.
I looked horrible but ignored it till my dr next day asked me what was wrong.
He told me 2nd time could be the final swelling of my throat, stop breathing.

Then I did same thing again few weeks later. OMG, had appt with him.
He sent me to dermatologist and allergy dr that day. They said no shellfish ever again.

I carried EPI PEN at all times. Told by one dr he was allergic to different shellfish, my girlfriend gets
swelled up from one fish. My dr told me I could try other shellfish with Epi pen on hand.
For surgeries surgeon can't use Iodine to clean area, uses betadine.
I think I would be fine using it for contrast - but no drs will do it. Now I get reactions to all contrasts.

 

[StarChild56]

Force Honra - good move to female dr. To leave a dr - to go to another one in same practice - hard!
Great excuse - more comfortable with female doc.

Due to your post - I worked on my sinuses/allergy last nite. Just get too lazy. I did everything I have.
My head was pounding from my sinus pain - and I can hardly breathe. so it helped a lot. Massaged them also.

It really is (switching docs in the same practice), and I've had this primary care doctor about 2 years but before that, I had the same amazing primary care doctor for over 15 years.

I am glad your sinuses feel better! This probably is not something that would work for you but a long time ago when I kept having sinus infections, the nurse at my job told me to take regular sudafed (not even the kind you have to use your ID to get, behind the counter) at the first sign of a sinus infection or pain/pressure. That worked for me but I didn't have as severe of a problem. But a thought in case it would help you

 

[starlily88]

It really is (switching docs in the same practice), and I've had this primary care doctor about 2 years but before that, I had the same amazing primary care doctor for over 15 years.
I am glad your sinuses feel better! This probably is not something that would work for you but a long time ago when I kept having sinus infections, the nurse at my job told me to take regular sudafed (not even the kind you have to use your ID to get, behind the counter) at the first sign of a sinus infection or pain/pressure. That worked for me but I didn't have as severe of a problem. But a thought in case it would help you

Thanks Force e Honra for tip on Sudafed. Shame to loose dr after 15 yrs.
Starlily88

 

[starlily88]

I am glad you are going back to get your thyroid levels re-tested. Since you're still on a blood-pressure medication, I honestly would not recommend the beta-blocker just for the insomnia. Not sleeping is horrible I know but I don't want you to have a low-blood pressure episode over it.
Have you tried any sleeping aids? The ones that have worked for me in the past are melatonin, benadryl, and doxylamine (Unisom). Of course, be sure to make sure none of them interact with whatever other meds you're on before taking them.
I'm sorry you're going through this! Please keep hanging in there. Take care.

I have insomnia like all ME people. Now with hyperthyroid none of my sleep meds work at all.
I never went to bed Sunday nite, Mon nite, Tuesday nite - meds did nothing. At last on Wednesday in AM I fell asleep, but only 3 hours. I feel like I am out of my mind

I re-did the blood work yesterday. Now 2 are normal, 2 are not. Better than all 4 not normal 3 weeks ago.

TSH 0.03 u(IU)/mL 5/15/18 0.09 u(IU)mL 6/6/18 Standard 0,50 - 4.50 u(IU)/ml

Sed Rate >130 mm/h 5/15/18
55 mm/h 6/6/18
Standard 4 - 30 mm/h

T3 Free 7.0 pg/ml 5/15/18
3.1 pg/ml 6/06/18
Standard 2.0 - 4.9 pg/ml

T4 Free 2.1 ng/dl 5/15/18
1.0 ng/dl 6/06/18
Standard 0.8 -1.8 ng/dl

The T3 Free/ T4 Free dropped a lot. Now in standard range.
The TSH seems the same - 0.03, now 0.09 - so still low. Below the standard range.
The SEDIMENTATION RATE dropped a lot from >130 to 55, still higher than Standard 4- 30 but that is good.

What does this mean? My T3 & T4 Free are Normal! But my TSH is still low (it did creep teeny bit).
My Sed Rate did drop a lot.
Do I still have Hyperthyroid? Why can't I sleep if T3/T4 normal? Is it the low TSH not letting me sleep?

Talked to new ENDO today.
I told him I didn't take Atonolol - because dr said no.
He would never use Atonolol, and why did dr change mind.
He said to just adjust my BP med (I have cuff).
I cut my BP med in half yesterday anyway - I don't want it low.

New ENDO agreed I have hyperthyroid - he didn't want to comment at first.
He recommends Metopralol beta blocker. Called it in to my pharmacy.
He asked me to read the name of the Uptake Scan - he was pleased - it was exactly what he would do.

Calling to schedule the Uptake Scan now, and going to reschedule the ACTH..
I am confused as to how this will turn out - cortisol is highest when you wake up.
I have to be up 7AM - I probably won't sleep if this continues, thus skewing the results.

Surprising thing he told me was he doubts I have Graves disease.
I can't tell you why - my comprehension level is at all time low. Something about my thyroid so painful?
Thanks - Starlily

 

[boombachi]

@starlily88 I dont know what any of that means but I hope you will start to feel better and I hope you get some sleep soon.

 

[starlily88]

@starlily88 I dont know what any of that means but I hope you will start to feel better and I hope you get some sleep soon.

Thanks - I am afraid at this point - because I have never stayed awake this long ever.
I hope the beta blocker will work plus I filled a script for my UTI or IC flare. It makes normal people tired.

 

[starlily88]

Baltimore is twice the size of my city. Surely there are more than 3 endos in your city who are taking on new patients, unless there is some kind of a severe endo shortage. I checked, and it looks like there are 30 endos in my city and 100 in yours.

Here is what has worked for me in terms of finding doctors - I sort of lucked into getting into the University of Cincinnati health care system. They also have a teaching hospital, which means they can handle complex things that other hospitals might not be able to.

It looks like the University of Maryland medical system might be the equivalent in your city.

Anyway, I had found a functional medicine doctor in the university system who was also my GP (pretty difficult to find). Then she decided to go full time into functional medicine which meant I had to find a new GP. I asked her for who would be good for my situation, and she gave me a couple of names. She said they would refer patients to her, which meant they had some kind of knowledge and respect for functional medicine.

I checked out the doctors she suggested on Health Grades, WebMD, and Vitals doctor rating websites. You can get a good idea as to what other patients think about them and their "bedside manner" before meeting them. I made my final selection based on that.

So when I talked to my new GP, I found out she has a handful of other ME/CFS patients, and she was happy to receive the Physicians Primer for ME-ICC (International Consensus Criteria for ME). And she's been sensitive to my needs as far as not tolerating chemicals and so forth.

Then if I need a specialist, she can refer me to other docs in the system, which is a very large system. I also check out the specialists on the doctor rating sites before hand, so I don't get a low rated one.

The university system also has several locations around the city, one of which is pretty close to me. They also have an online portal with your medical records, and you can make appointments and ask the doctor questions.

Also, if you're below a certain financial limit, you can apply for financial assistance and they will take care of anything that Medicare doesn't pay.

Here's hoping there is something like this in your city.