Aa
No one understands
How come no one understands? No matter what we go through, no matter how much we try to live normal lives. Why? do people alway's believe we purposely desire to live with hormonal imbalance. I don't get it ! Why do people believe, we enjoy living daily with depression, anxiety, heart palps, fatigue, insomnia, pain, and the list goes on.
Why is it so difficult for a person, to believe these things can happen, when a person's body becomes sick. Why do people refuse to believe. Such as a freakin Endo. Even they don't believe we experience symptoms. What we experience cannot happen. Labs state normal. But our bodies tell a different story. Why? doesn't anyone ever believe ?
The most difficult part of my journey has been communication. No matter how much I explain/express myself, family/friends/doctors do not understand. Oh your tired, because your not exercising enough. Your in pain, because you over exert yourself. Your gaining weight, cause your eating to much, you need to go on a diet/exercise. You have insomnia, cause your drinking to much caffeine. It's like whatever I communicate goes right over thier heads, didn't hear a word I shared. I just shared why? I am feeling the way I am today, did you hear anything I said.
I believe being sick is not the most difficult part of one's journey, but communication is. No one listens/understands. I could write a book about this topic.
A person walks into an Endo's office, express how they feel, thier symptoms, Endo looks at blood labs. Your normal, end of story. Did Endo hear a word the patient expressed.
Goodness gracious ! If anyone has an answer, that would be wonderful.
Why is it so difficult for a person, to believe these things can happen, when a person's body becomes sick. Why do people refuse to believe. Such as a freakin Endo. Even they don't believe we experience symptoms. What we experience cannot happen. Labs state normal. But our bodies tell a different story. Why? doesn't anyone ever believe ?
The most difficult part of my journey has been communication. No matter how much I explain/express myself, family/friends/doctors do not understand. Oh your tired, because your not exercising enough. Your in pain, because you over exert yourself. Your gaining weight, cause your eating to much, you need to go on a diet/exercise. You have insomnia, cause your drinking to much caffeine. It's like whatever I communicate goes right over thier heads, didn't hear a word I shared. I just shared why? I am feeling the way I am today, did you hear anything I said.
I believe being sick is not the most difficult part of one's journey, but communication is. No one listens/understands. I could write a book about this topic.
A person walks into an Endo's office, express how they feel, thier symptoms, Endo looks at blood labs. Your normal, end of story. Did Endo hear a word the patient expressed.
Goodness gracious ! If anyone has an answer, that would be wonderful.
Keep looking for a dr who will listen to you! They are rare, but can be found. I am on dr #5. My last endo had me so frustrated, I was ready to give up. She told me that 9 out of 10 people out there have the same symptoms I was complaining about and it wasn't because of thyroid. And told me I was actually hyper because of my TSH, not hypo. I kept up the search and found an amazing holistic MD who really listened to me. I feel like the healing process started the day I met her...She gave me hope again! We switched up my meds 8 weeks ago and I am already feeling much better. I do pay her out of pocket, but it's worth every penny!
Why don't you try to look for another dr who can understand you more?
Yes so far i haven't found a new dr. yet here in VA beach.
Yes so far i haven't found a new dr. yet here in VA beach.
Looks like after today's USA Supreme Court ruling that we may start to have more in common with the UK and their National Health care than we do now!
I think things are going to get worse rather than better with Dr's ONLY looking at lab results in the conveyor belt medical system to come. Look at you for 2 minutes, look at labs tell you you're fine, NEXT!
I think things are going to get worse rather than better with Dr's ONLY looking at lab results in the conveyor belt medical system to come. Look at you for 2 minutes, look at labs tell you you're fine, NEXT!
Definitely a problem...I struggled with a PCP who kept telling me I needed more meds (I know, I know, no one but me has had this problem) even though I told her I was completely asymptomatic and was sure raising my dose was going to kill me. Her attitude was "With a TSH of 20.0, you can't feel fine." A pituitary issue never even crossed her mind.
That was nearly 3 years ago and when I found this forum. Amazingly enough, back then, THIS FORUM placed a lot more emphasis on TSH than we do now. Most members told me the same thing my PCP was telling me...you need more meds to get your TSH down. I've met others with "textbook" hypo cases who look at me like I have 3 heads when I tell them of my trials and tribulations getting regulated...they all take their pill in the morning...end of story.
I finally searched for an endo in a very small medical market. I only had one choice really, and I was so discouraged by doctors at that point that I was fully prepared to stomp out of his office calling him an idiot and telling him not to bother billing me for the visit! In fact, I'd rehearsed the speech the whole night before in my half-sleep. Okay, so I immediately loved him...all that work on the speech for nothing. LOL Yes, he's an endo, and he really listens, and when it's a choice between the symptoms I report and the labs, he believes me.
Don't give up. Good doctors are out there. A good deal of luck is involved in finding them. As I said, he was really my only local choice. If I hadn't lucked out with him, I'd be driving 125-175 miles to my endo appointments.
The state of health care in this country is appalling. Both my husband and I have struggled with doctors over diagnosis (not just thyorid). Our PCPs haven't gotten it right lately, but we stay with them because they listen (or try to) and are never condescending. The choices we're forced to make...
That was nearly 3 years ago and when I found this forum. Amazingly enough, back then, THIS FORUM placed a lot more emphasis on TSH than we do now. Most members told me the same thing my PCP was telling me...you need more meds to get your TSH down. I've met others with "textbook" hypo cases who look at me like I have 3 heads when I tell them of my trials and tribulations getting regulated...they all take their pill in the morning...end of story.
I finally searched for an endo in a very small medical market. I only had one choice really, and I was so discouraged by doctors at that point that I was fully prepared to stomp out of his office calling him an idiot and telling him not to bother billing me for the visit! In fact, I'd rehearsed the speech the whole night before in my half-sleep. Okay, so I immediately loved him...all that work on the speech for nothing. LOL Yes, he's an endo, and he really listens, and when it's a choice between the symptoms I report and the labs, he believes me.
Don't give up. Good doctors are out there. A good deal of luck is involved in finding them. As I said, he was really my only local choice. If I hadn't lucked out with him, I'd be driving 125-175 miles to my endo appointments.
The state of health care in this country is appalling. Both my husband and I have struggled with doctors over diagnosis (not just thyorid). Our PCPs haven't gotten it right lately, but we stay with them because they listen (or try to) and are never condescending. The choices we're forced to make...
I actually like my Endo & primary. Only thing I don't like is they can't give me an answer as to "the why" on my issues.
As far as friends, co workers, family go...
My philosophy on medical issues are a "need to know basis" & quite frankly, most of them don't need to know....All my husband knows is I have to take thyroid medication & that's it.
However, I am not the norm when it comes to thyroid issues.
As far as friends, co workers, family go...
My philosophy on medical issues are a "need to know basis" & quite frankly, most of them don't need to know....All my husband knows is I have to take thyroid medication & that's it.
However, I am not the norm when it comes to thyroid issues.
COMMUNITY LEADER
I think to some degree, we can all relate to your frustration.
The main thing I heard is "you don't look sick, to me, you're just being lazy". Sure, it's laziness that makes me fall asleep sitting at a red light!! "You gained weight, because you eat too much and don't exercise". Sure, that's why I wasn't able to lose a single pound, even walking 6-8 miles/day and doing an hour of yoga every day.........Umm hmmm.
If we had a broken leg, or arm, we'd get all kinds of help, because that's something people can see and relate to - a clear, visible reason for being in pain/not feeling well.
When you talk about thyroid issues, how many people simply give you a blank stare, because they haven't a clue what you're talking about? I get it all the time. Many people don't know what the thyroid is, where it's located or what it does and even when you tell them, they don't believe it's all that important; my husband didn't realize until just the other night that if I don't take my thyroid med, I'll eventually die. Of course, I probably wouldn't because I'd feel so horrible that I'd have to seek treatment. The sad part of it is, even after I explained that thyroid controls metabolism, heart rate, body temp, etc - he wasn't convinced.
As for doctors, far too many of them only look at labs and when the labs are "in range", you have to be fine, because they don't know what else to do, because they're scared to death to medicate you beyond the minimum, for fear of tipping the scale to hyper. That's why doctors panic when they see my < 0.01 TSH. Until someone/something finally breaks through and TSH is no longer the gold standard for thyroid testing/diagnosis/treatment, I can't see things changing a whole lot.
I know there are instances in which a doctor's hands are tied, such as what we see in UK with the NHS, some of our own Medicaid systems, military, etc because the doctors have to follow certain protocol and can't deviate from the "standard of care" guidelines.
I guess part of our job, here, is to try to educate people; both, those on the street that we meet every day, along with the doctors who are trying to treat us. It's frustrating, at best.
In the meantime, admittedly, we're the ones who pay the price.
The main thing I heard is "you don't look sick, to me, you're just being lazy". Sure, it's laziness that makes me fall asleep sitting at a red light!! "You gained weight, because you eat too much and don't exercise". Sure, that's why I wasn't able to lose a single pound, even walking 6-8 miles/day and doing an hour of yoga every day.........Umm hmmm.
If we had a broken leg, or arm, we'd get all kinds of help, because that's something people can see and relate to - a clear, visible reason for being in pain/not feeling well.
When you talk about thyroid issues, how many people simply give you a blank stare, because they haven't a clue what you're talking about? I get it all the time. Many people don't know what the thyroid is, where it's located or what it does and even when you tell them, they don't believe it's all that important; my husband didn't realize until just the other night that if I don't take my thyroid med, I'll eventually die. Of course, I probably wouldn't because I'd feel so horrible that I'd have to seek treatment. The sad part of it is, even after I explained that thyroid controls metabolism, heart rate, body temp, etc - he wasn't convinced.
As for doctors, far too many of them only look at labs and when the labs are "in range", you have to be fine, because they don't know what else to do, because they're scared to death to medicate you beyond the minimum, for fear of tipping the scale to hyper. That's why doctors panic when they see my < 0.01 TSH. Until someone/something finally breaks through and TSH is no longer the gold standard for thyroid testing/diagnosis/treatment, I can't see things changing a whole lot.
I know there are instances in which a doctor's hands are tied, such as what we see in UK with the NHS, some of our own Medicaid systems, military, etc because the doctors have to follow certain protocol and can't deviate from the "standard of care" guidelines.
I guess part of our job, here, is to try to educate people; both, those on the street that we meet every day, along with the doctors who are trying to treat us. It's frustrating, at best.
In the meantime, admittedly, we're the ones who pay the price.
I don't have any answer for you, sorry, but I had a total thyroidectomy 3 years ago, and I COMPLETELY relate to your post! I don't know which is more frustrating, having this ridiculous mess or trying to explain it to the same people every time you see them, not to mention having doctor after doctor treat lab results and not listen!
If you figure out an answer, let me know! :)
If you figure out an answer, let me know! :)
There is a pretty good explanation of why in this link. How to fix it is another matter.
http://nahypothyroidism.org/why-doesnt-my-doctor-know-all-of-this/
Are you satisfied with your current doctor? If not, would you even consider traveling to the area just north of Austin?
http://nahypothyroidism.org/why-doesnt-my-doctor-know-all-of-this/
Are you satisfied with your current doctor? If not, would you even consider traveling to the area just north of Austin?
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