[Anonymous]

#1157668

I concur with Debby on this subject. There is a certain amount of theraputic value to be had from “venting your spleen” over frustrations we are having with our physicians. It is rare that I don’t end up in tears driving home from appointments with my own endo due to my frustration at feeling that he is just not hearing me, or is somehow minimizing what to me are quality-of-life issues that I am compelled to live with on a day-to-day basis. The bottom line however is that we are not without choices in these matters. Knowledge is power. If we truly feel we are in the hands of an incompetent or uncaring physican, we need to start looking for another doctor with whom we can form a rapport and who we do feel we can trust. I think that the health care system is such that we sometimes lose sight of the fact that we are the captains of our ship; not the doctor. They serve in an advisory capacity only. Take care.

Luci

[Anonymous]

#1157669

Hear! Hear! I think we also need to remember that medicine,
like predicting the weather, is not an exact science.

[Anonymous]

#1054026

I’m not sure how to say what I want to say without offending anyone or
pointing fingers. I’ll try to be concise, but tactful. I just feel this
needs to be said.

In recent months we have had a number of posts on this BB that would go
under the class of doctor-bashing. I find it disturbing that so many
people are willing to voice their intense anger and frustrations about
their doctors on the Internet. Our doctors are supposed to be our health
partners. We’re supposed to work together to try to find the cause of
pain or sickness and treat it if we can. When I see angry posts with
multiple exclamation marks and namecalling, then I would say that this
health relationship is dysfunctional and needs to be changed. No one is
helping anyone, except raise the temperature of the emotions on both sides.

Doctors are human, they don’t know everything and they can’t solve all our
problems with pills or surgery. There is still so much that is unknown about
Graves’ Disease. Instead of being angry about the lack of knowledge, we
can be part of the answer. Some of the NGDF’s goals are to provide information
that incorporates a multi-disciplined approach to the treatment of Graves’
disease, and to establish liaison relationships with the major schools,
hospitals and research institutions both nationally and internationally.
Let’s try to stay calm and work together toward these goals.

Yes, we warriors have bad days. Yes, the medications and treatments don’t
always make us feel better. Yes, some symptoms are just being acknowledged
by the health profession. But, our anger won’t help treatments come any
faster. Our willingness to work together might.

If you don’t think your doctor is giving you the best possible healthcare,
then switch. Easier said than done in some cases, but no one is *forcing*
you to go to this clinic. Find a way to find a doctor that has some knowledge
of Graves’, and be willing to work together.

So, I’m back to mmmmmmm. As a support group we need to be able to hear
the good with the bad. We all need places to vent, but let’s try to keep
the frustrations limited to the disease and how to cope with them. We have
many newcomers to our BB that don’t need more discouragement, but hope for
future wellness.

Thanks for listening, Debby

[Anonymous]

#1157670

First of all I want to thank you for your comments and I understand where you are coming from. But put yourself in MY shoes. I started having symptoms yes bad ones in February of this year. I saw my gynecologist who did run tests. He then sent me to our Primary Care doc. Our insurance is an HMO and we can only change primary care once every 5 years! This doc thought I was just depressed and pre-diabeteic. I wasn’t and I told him so. I did speak up for myself. Did he listen??? NO.
Yes he drew a tsh level. In 2 weeks my tsh went from .78 to.43. Then I saw him the next week because I kept passing out and my heart was racing at a rate of 160. Mike went with me. This doc said he would not treat hyperthyroid disease until I showed overt symptoms. He would not run anything except another tsh level which was .23. Mike and I exploded and handed him all the info we found on the web about hyperthyroidism. Did he change his mind about treating me NO. So Mike threatened to call our HMO about him and he finally agreed to refer me to an endo.
I saw the endo 3 days later. My tsh level was .19 that day. They said that doctor was so wrong in how he treated and diagnosed me. They set me up for RAI and I had it done 4 weeks ago. I was so impressed with them the first two times I saw them. But when I saw them yesterday and Mike did go with me, They said that since none of their other patients ever jerked or shook like me this was not Graves Related. We did tell them that yes it was If they didn’t believe us all they had to do was to come to this bb or to a thyroid site and look it up. So what if None of their other patients jerk and shake like me. I am ME I HAVE MY OWN DNA I AM ME!!!!
Everybody on this earth is different and every disease hits and reacts differently to everyone.If I never had any of these symptoms in my life before but I am now I now it’s Graves. We were so hurt yesterday. They were calling us a lair because of what we told them. Do any of you have five young kids like mine ages 2,4,7,10,13? are any of yours have ADHD? I have three kids with ADHD. Can you lead a semi-normal life? I CAN’T. I am 40 years old. An educated retired elementary school teacher and I used to work in a CCU Helping doctors put in Pacemakers, PA Lines, Arterial Lines, etc. Can I do anything now? No. Everytime I stand up I fall on my face.
I can’t cook, I can’t walk without a cane, I can’t go up or down stairs without help. I haven’t been to a grocery store since February. Can I pick up my two year old when he hurts himself or carry him to bed? NO Can I go to school and meet my kids teachers or be part of their school life no. All I can do is sit in a chair here, look up research, watch my kids play and watch tv, read and help with homework. I try to fold laundry they bring me but my arms give out so fast. Can I remember what happened last week let alone yesterday or the day before that? NO Ask my son who asked me at 10 pm last night where his stuff on Mexico that he asked me last week to print out for him was.
I can’t remember him ever asking me. Do I remember where I put my pen? No. So don’t ever criticise me or anyone else for venting our feelings about doctors who we have stood up to and presented documented cases of what we are going through until you can put yourself in my shoes in this messy house. I want my life back so much and as hard as we arefighting for help, Mike and I cannot get these doctors to research more in behalf of me. So how else am I supposed to feel. What do you want? Do you want me to lie down and give in? Forget it!! I have to much to fight for so If I vent I have that right. I’m sorry if I have made anyone mad. I’ll just stay away from this bb and chats . Please excuse the way I feel.
My kids are growing up and I can’t keep up with anything anymore. I thought you would understand the frustration I and others go through, guess I was wrong.

[Anonymous]

#1157671

True. Good words, Debby. But people with GD need encouragement
and help. WE ARE SICK. The must important thing a GD patient
needs is an excellent doctor..one who combines compassion with
competency. Sometimes this takes multiple attempts. My own
first experiene with an endo was not great. I personally felt
he was condescending and arrogant. I made the decision following
my sub-total thyroidectomy that my GP (who is very compassionate
and competent) was the better person to assist me in the future.
Unfortunately, you have to experience the worst in doctors to
propel you on to someone better. Good luck to all.

[Anonymous]

#1157672

Thanks Debby, that’s exactly why I put my post on the BB. To show something positive going on. To show that there are some wonderful doctors out there.And to let the newcomers know that there is a time they will get better. Keep the faith……Gwen

[Anonymous]

#1157673

Debbie: I agree w/you that negativeness affects BB morale and inhibits the recovery process. However, I value the information from each and every experience posted on this BB whether it was negative or positive as it helps me formulate the “big” picture when it comes to this disease and know what to expect and relate this to my specific situation.

Miriam: I do feel for you and I agree that your doctor is definitely not for you. One option that you may have is to continue treatment with another specialist and pay out of pocket until your HMO approves the doctor change. This is what I am doing for a year due to the wonderful world of insurance bureaucracy. It is expensive, and as a new college grad in between jobs at the moment, these new expenses could not have come at a worse time. But I feel much better that I do not have my life and health in the hands of someone who will collaborate with me on MY situation.

Best Regards,
Lana

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