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KGWINDER's Photo KGWINDER Posts: 1,625
2/15/20 6:11 P

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Still a valid topic 😊

1) I go to the doctor and say “I get these thick skin areas but they heal and then reappear in other areas”. Her reply no kidding “that can’t be they wouldn’t heal it would chronically stay”
A) if I say I see blue even if the paper is white it doesn’t change my experience of blueness; maybe there is a reason for the difference. If my skin heals maybe there is a reason. Which leads to B
B) My doctor left me a message after the biopsy came back from another doctor that proves I have a second diagnosis.

I real never want to see them again. How about:
“I’ll note that”
“I don’t instantly have an explanation for that”
“Can I give you a referral to a dermatologist that understand that?”

My two: *doctors that try rewrite a patient’s reality to fit the 80% they remember from now outdated text books *a health care system that doesn’t give doctors time to research the answers

K Winder


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MYDIETINFO1's Photo MYDIETINFO1 Posts: 5,135
1/21/20 10:00 P

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I know this is an older post but I am facing a lot of these issues now.

Ears nose & throat doc did a random biopsy of thyroid 5 yrs ago cuz I noted lumps and fought for testing. I was diagnosed Hashi’s and told me to ignore things until TSH is abnormal. No plan to test me routinely or anything and he said with Hashi’s I’ll NEVER have thyroid cancer. No one cared I was having multiple symptoms of hyper and hypo.

Last summer family doc suggested I go off my tecta for my stomach and sent me to stomach doc.
Stomach doc said can’t do anything with stomach until thyroid straitened out.
Stomach doc was first doc to admit I had a thyroid problem even though I had been diagnosed with Hashimoto thyroiditis 5years ago. I was so excited.
He referred me to endo and said he’s brilliant.
My excitement didn’t last long. I told endo I only ate 14-1600 calories a day and workout 1hour cardio daily and half hour weight training 3x/week. No energy and every single symptom of hypo and some hyper at times. My heaviest was 320lbs.
said I was wasting his time as I’m fat cuz I overeat and am lazy. Also said because I’m a nurse that I’m neurotic.
He also refuses to listen to any of my symptoms since my TSH is in normal range. I asked him about “optimal” range and he said my brain tells us what is optimal and that’s by TSH levels.
Fast forward to this fall I advocated for myself and forced his hand to assess things again and now I’m 2 weeks post op. Had right half thyroid out due to mixed papillary thyroid cancer. (Which by way I’m told won’t change TSH levels-so not sure why all docs look to TSH.)
My pet peeve remains same. I’m told to ignore all my symptoms as TSH is 3.75 (normal range 0.32-4.0) (all labs within normal but most just barely)
His plan is for me to do bloodwork every month for 4 months and he’ll see me in late spring. Only reason I know my lab results is because I went to lab that gives me access to my results via email. Endo states I never need to know my results as he will deal with anything outside of normal.

I no longer trust any ENT specialists or endocrinologists and barely trust family doc (and he’s a great guy but unfamiliar with thyroid issues)
I have spoken to a natural path doc and she suggested I increase my calorie intake to 17-2000 calories per day and decrease my intensity of cardio workouts as my body is stuck in fight or flight response. Also suggested several vitamin/mineral supplements.
Since I did as suggested in 6 months I’ve lost 48lbs but still have a lot of symptoms of hashimottos and fluctuate between hypo and hyper. Plus I can’t afford to see natural path too often and afford supplements too.

Any suggestions on how I can approach endo with my continued symptoms and convince him of the real “optimal” TSH levels? I’m actually considering leaving endo and just relying on family doc if he thinks can do it all.
Sorry this is so long. -Carol


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OVERDUECHANGE's Photo OVERDUECHANGE SparkPoints: (99,963)
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8/20/16 10:30 A

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Risingbluestar,
I am right there with you. My doctor told me for 7 years that my thyroid was fine. NO. Not fine.
I've been pushing back the past two years. (I did get relief in the first year with my prior doc, when I initially started the meds.)

This year, he finally explained to me that the 'fine' range is actually rather wide. He's always kept me 'at the high side of normal', but, in January he agreed to change something, and increased my dosage, in an attempt to push me to the 'low side of normal'.

By April I felt like a completely new person. I still have no idea where on that range I am. When I did the followup blood draw, I just got the usual form letter back 'you're in the healthy range'. LOL.

Oh, I also have a condition called Myasthenia Gravis (thankfully in remission at the moment). In the year+ it took me to get a diagnosis, they: gave me up for dead, said I was just faking it for attention, had toxic shock syndrome, had depression, had fibromyalgia, had a stroke, etc. basically everything except what it actually was.
Turns out their medical books at the time said mostly men get the condition... probably because all the women were fobbed off with 'the vapors' etc.
Luckily one of the medical students who came in to poke and prod at me thought to try the test for this disorder and they were all shocked when it was positive. Needless to say, when I had problems, docs at the ER still didn't understand, the people at the disability office didn't understand, so I had to go years without meds after my mom got a raise at work and lost me my medicaid.
Whatevs.

Medical professionals do a lot of good in the world and have saved my life more than once, but, that doesn't mean we shouldn't push back and be good advocates for ourselves and our loved ones.

Not all those who wander are lost


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RISINGBLUESTAR's Photo RISINGBLUESTAR Posts: 2,031
8/20/16 7:45 A

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Exactly! I feel bad for people who are still undiagnosed but what they don't know is the battle never ends, even taking medicine, a lot of us still feel so sick and my PA keeps telling me that they have to have proof. No proof, it's not real or true. Well, too bad we can't go in there and push a button to make them feel how we FEEL so they can't just look and numbers and tell us we are fine. Yes, I get your frustration.








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RISINGBLUESTAR's Photo RISINGBLUESTAR Posts: 2,031
8/20/16 7:42 A

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Happy to have asthma? As an asthmatic myself, that is offensive! Happy that you have a condition that makes it difficult to breathe? I do t think so!

$140 is a lot of money. Is that for one inhaler? There is an asthma medicine (inhaler) that works really well. It is Xopenex and I think it is basically albuterol but without insurance, it is $65. Still expensive and the Generic to Albuterol is cheaper.


Yes, specialists do dismiss you. You have to be bleeding on the floor before anyone believes you are actually sick. We wait months to just get hear we need to "lose weight and eat healthier."








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DJ4HEALTH's Photo DJ4HEALTH Posts: 71,045
8/2/16 11:13 P

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My pet peeve is when you go there and still feel like crap that they tell you but your tests are normal. Normal for whom. I am tired of them putting us all in the same level as every one else, we are not the same and should not be treated the same as statistics say that we should be. Not all people respond to it the same way.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley

For the Lord Himself will descend from heaven with a shout, with the voice of an archangel, and with the trumpet of God. And the dead in
WILLOW2044's Photo WILLOW2044 SparkPoints: (1,500)
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8/1/16 8:02 A

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I think my pet peeve are specialists who dismiss you easily. I developed asthma recently ( which I lrobably had before but didn't recognize it) and the specialist I saw just leaned back in his chair and looked at me funny. I hate going to see doctors, so if I am there, I am there for a reason. He did tests and yup I have it. When I went back to him for the results, all he said is that I should be happy I have it. I get they sometimes see people who are looking for something , either sympathy or attention, but not everyone is! I hate going to doctors for anything for hat reason. I hate feeling like a fake when I am not. Now I have to fork out $140 a month for medication for a problem that I really wish I didn't have. I could think of a lit of better uses for $140! It is just a pet peeve of mine. A little more sympathy and empathy goes a long way. :)

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RISINGBLUESTAR's Photo RISINGBLUESTAR Posts: 2,031
8/1/16 7:30 A

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I am tired of hearing "Your thyroid is fine. The levels are excellent."

Well, to clarify, I am tired that they act like the pills fix everything and you should be feeling like new. I am grateful to have a diagnosis and medication that helps but I have never felt "brand new" and it is still a struggle. Particularly the exhaustion.

Doctors read and study about a topic but they don't necessarily live it. I just wish they could truly understand.

What is your pet peeve when dealing with doctors








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