[jrusin70]

#1063402

HI, I’m new to this board and new to Graves but you really need to find another doctor. I would find another endo and see what they say. My doctor immediately referred me to an endo after all my tests because he couldn’t treat me and I was feeling terrible. I hope you find a good doctor.

[karilcole]

#1018228

Hi everyone,
I dont know where to go, who to talk to, or what to do. I feel as if I am going crazy! Maybe someone can shed a little light on my situation…or just tell me I AM the crazy one
A little background info. Diagnosed hypERthyroid & Graves in ’98, RAI in jan ’99. Endo retired in ’02 & have seen family dr since. I got my lab records 2 months ago & realized my TSH has never been above .92 (between <0.02 to .92) since ’03 with only a few small dose changes thru the years. (Not to mention WBC, PLT CT, among 4 others WAY off ’03-now) No wonder I have felt this way for years. I thought it was normal with GD. I have a new family dr now. He checked my thyroid levels a few times w/ strange results. He was confused on my TSH levels. They were all done by the same lab (& always have been) & I have NOT changed my dose since ’09. He wanted to send me for an MRI, but was waiting for the last results. These were the results.
8/4/10 TSH .203
8/24/10 TSH 20.4 (maybe lab error)
9/1/10 TSH 5.77
11/1/10 TSH 2.37
Now he said I was in the ‘normal’ range see him in 3 months. When I mentioned I have NEVER had the ‘normal’ range, and have not changed my dose in a year, how could I get these results? He told me the 3 of 4 must be lab errors, & as far as my history, he doesnt know. I asked if I should try to find an endo, he said no & that he would deal with it. I also mentioned my eye issues lately. It is really hard to drive in the dark. The lights are terrible! He told me to "just dont drive in the dark" I told him that I have kids to take to school & sports w/ no one to help with the driving. He just laughted.
All the other labs that have been off for almost 9 years he said, and I quote "these abnormal results must just be your normal. With your WBC, I could check your bone marrow & test for leukemia, but is it worth it? Its not THAT high" WHAT?? Who said anything about leukemia? UGH. Not that I think that is the issue, but way to scare the pants off a person!
Sorry, back to the thyroid ) Is it possible to get these TSH results with OUT changing meds? The other thyroid levels are in normal range & have been for years (when they were actually checked by my old dr) Friends & even hubby tells me to let him do his job. Am I the crazy one? Please be honest. If he wouldnt have talked about how concerned he was about the other results…I wouldnt have done my research & Wouldnt know the difference. But he did & I did so now I am even more confused then ever. Sorry for the babbling…..
Thanks for reading & any help you can give me. ~Kari

[Kimberly]

#1063403

Hi Kari – It seems logical that if TSH is moving around, it should be doing so in response to T3 and T4 levels. However, we are not medical professionals here, so we can’t interpret specific labs. You are definitely *not* crazy for wanting a doctor who will address your questions and concerns!

If you do decide to visit an endo, a couple of good web sites for endocrinologist referrals are http://www.aace.com/ and http://www.thyroid.org/. If you use the aace site, be sure and select the specialty “thyroid dysfunction.” Many endos primarily see diabetes patients and aren’t all that familiar with Graves’.

Also, if you are concerned about possible Thyroid Eye Disease, I would suggest getting evaluated by an Ophthalmologist who is familiar with TED. Sometimes I find that my night vision deteriorates faster than my day vision when it’s time to get my prescription changed for my glasses/contacts. So it might be something as simple as that. However, with your history of Graves’, it would definitely be worth getting this situation checked out.

Best of luck to you!

[karilcole]

#1063404

Thanks! I have no one to talk to about all of this. Here is what I am most confused about.
My 2nd appt he got my results (20.4) and was ready to change my meds. THANK GOODNESS I did my research. I explained maybe a lab error b/c my last labs (20 days earlier) was .203. I even showed him my copy. He said lab errors rarely happen, but lets wait to change anything. SWEET! He actually listned! HE said labs rarely make mistakes, HE brought up the pituitary tumor & needed an MRI, HE said it doesnt make sense! NOW with 1 ‘normal range lab’ I am fixed & 3 of 4 were lab mistakes, no mri to even check after saying that & see me in 3 months. I’m so frustrated!
Not that this part matters, But I have to tell it. ) My WBC, PLT CT, among others have been off for years. My old dr never said a word & I never knew or asked. This new dr seemed to listen so I asked him at my last appt "why". He says abnormal is just my normal. OK..lol THATS when he said "I mean its not like they are THAT high. I could do a bone marrow test to check for leukiema (sp) but is it really worth it? If it goes higher I will do one" Not that that is a concern of mine, they have been off for over 8 years. But Why even say it?
Before I left I asked if I should get an Endo, he said no. they wouldnt do anything he isnt doing. The only Endo around here didnt take my insh. I am calling today to see if maybe she takes my new insh. I do not have optical insh, but I was told the optom will bill it as medical so I should be good there. Daylight savings saved me from taking kids to school in the dark! YEAH! ) I guess I will keep searching until I find a dr that WILL listen. How do you all explain things to your dr without sounding like a hypercondriac? lol Thats what I feel they will be thinking when I see a new one.
Thanks again for responding! Its nice to know other ppl out there WANT to know whats going on & actually DO ask questions. Here, no one asks, just trusts. I cant do that anymore! ~Kari

[Kimberly]

#1063405

Kari – You have been through a lot…and you are definitely NOT a hypochondriac! Perhaps putting together a list of your symptoms, a timeline of your Graves’ journey, and copies of your labs will help a new doctor get up to speed…and hopefully, get you some RELIEF! There *are* good docs out there…you just need to keep searching until you find one!

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