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Update on my endo visit
I saw my endo (this is 2nd visit in two months) this week. He had a look at all the results from the blood tests that were taken 2 months ago. La la la chat chat chat..oh you are Hyper drop the dose, keep up the calcium, see you in 4 months.....WHAT???? I reminded him he had asked me to drop the dose which I had done, and showed him MY blood tests which I had requested myself. He looked and said...Oh! Well, that's good the new dose is working!
My TSH was 0.05 now it is 0.14 whoop de bleeping do! The Free T4 dropped from 24.7 to 19.7 so that is a good drop but not enough. I told him these were done 25 days ago and shouldn't we get new tests now, as I am starting to notice the hypo symptoms starting again..especially depression...BIG depression. He said, oh no we'll just see how you go along for the next 3 to 4 months...I was astounded. I had warned him that I didn't want to go down to 100 mcgs as I go too hypo, but obviously 114.3mcgs makes me HYPER. He said that was the better dose for me. I did mention maybe going to 105mcgs but he dismissed that. I mentioned perhaps some T3 was needed, no no that is not necessary at all. Just stay on the lower dose and see him in 3 to 4 months.
I had no morning cortisol results to show him, when they took the blood they put a note for pathology, PM draw follow up this afternoon...so they forgot to actually process the morning vial of blood and only did the afternoon one. Which as he said was a complete waste of time, as the morning one could be super high or super low and the pm one normal. So he gave me a jug to pee in over the 24 hours...what he failed to remember was that the next day to take it to pathology was Christmas day. So that was a waste of time too.
He said it was a slim chance there could be an adrenal problem, and was ruling out what he felt endocrinology wise could be the problem of my exhaustion, chronic nausea etc. He asked me how did I feel about that, I said You know, I have every blood tests taken every 6 weeks but no one is looking for something else, only the obvious, so I really don't care any more...I will stay in my little house with no life and no job and no friends, and I will just exist. He shot me a look, and got quite upset. He said he was not sure it was an endocrinology problem and it could well be an immunology problem, especially since my teeth constantly get infections with no obvious sign of damage or point of entry to the roots. He said the white blood cell counts showed no infection... I said in total frustration and probably a bit angrily...Look at the date the WBC was done..NOVEMBER..when did I have the tooth out and the infection???? TWO WEEKS AGO of course it won't show up I am sick of this!!!! I told him You guys just don't get it do you! and started to leave... He told me he was sorry but he still couldn't think what else to do for me.
So see him in 3 to 4 months after explaining the frustration and tiredness and no life and total depression? It is coming into our summer here 40c (101F) a lot of the time..I have no air con, I know if I stay like this I will end up either in a psych ward or emergency department (which by the way is over a 40 minute drive and even then they can't always see you!)
So that's it for the moment, the depression hit BIG time last night (our Christmas day) and I ended up on the phone for 3 hours bawling my head off at my darling man to come take me away. He agrees the medication is too low as he has seen me at the start of this year the very same. He noticed it starting a few weeks ago. So now he's worried about me!
Oh well, that's all for now...just wanted to update those who follow my story!
Merry Christmas all!
My TSH was 0.05 now it is 0.14 whoop de bleeping do! The Free T4 dropped from 24.7 to 19.7 so that is a good drop but not enough. I told him these were done 25 days ago and shouldn't we get new tests now, as I am starting to notice the hypo symptoms starting again..especially depression...BIG depression. He said, oh no we'll just see how you go along for the next 3 to 4 months...I was astounded. I had warned him that I didn't want to go down to 100 mcgs as I go too hypo, but obviously 114.3mcgs makes me HYPER. He said that was the better dose for me. I did mention maybe going to 105mcgs but he dismissed that. I mentioned perhaps some T3 was needed, no no that is not necessary at all. Just stay on the lower dose and see him in 3 to 4 months.
I had no morning cortisol results to show him, when they took the blood they put a note for pathology, PM draw follow up this afternoon...so they forgot to actually process the morning vial of blood and only did the afternoon one. Which as he said was a complete waste of time, as the morning one could be super high or super low and the pm one normal. So he gave me a jug to pee in over the 24 hours...what he failed to remember was that the next day to take it to pathology was Christmas day. So that was a waste of time too.
He said it was a slim chance there could be an adrenal problem, and was ruling out what he felt endocrinology wise could be the problem of my exhaustion, chronic nausea etc. He asked me how did I feel about that, I said You know, I have every blood tests taken every 6 weeks but no one is looking for something else, only the obvious, so I really don't care any more...I will stay in my little house with no life and no job and no friends, and I will just exist. He shot me a look, and got quite upset. He said he was not sure it was an endocrinology problem and it could well be an immunology problem, especially since my teeth constantly get infections with no obvious sign of damage or point of entry to the roots. He said the white blood cell counts showed no infection... I said in total frustration and probably a bit angrily...Look at the date the WBC was done..NOVEMBER..when did I have the tooth out and the infection???? TWO WEEKS AGO of course it won't show up I am sick of this!!!! I told him You guys just don't get it do you! and started to leave... He told me he was sorry but he still couldn't think what else to do for me.
So see him in 3 to 4 months after explaining the frustration and tiredness and no life and total depression? It is coming into our summer here 40c (101F) a lot of the time..I have no air con, I know if I stay like this I will end up either in a psych ward or emergency department (which by the way is over a 40 minute drive and even then they can't always see you!)
So that's it for the moment, the depression hit BIG time last night (our Christmas day) and I ended up on the phone for 3 hours bawling my head off at my darling man to come take me away. He agrees the medication is too low as he has seen me at the start of this year the very same. He noticed it starting a few weeks ago. So now he's worried about me!
Oh well, that's all for now...just wanted to update those who follow my story!
Merry Christmas all!
Sorry it went so badly, Red.
Can't your GP help you twiddle your med dose? Tell HIM you want to try a small dose of Cytomel and a lower dose of T4, and see if he will monitor you while you tell him what tests to run and what scrips to write.
Just dreaming...
Can't your GP help you twiddle your med dose? Tell HIM you want to try a small dose of Cytomel and a lower dose of T4, and see if he will monitor you while you tell him what tests to run and what scrips to write.
Just dreaming...
Sorry its so frustrating Redhead :(
I too get my Doc to write me out pathology forms (with a copy to be faxed to me) and get them done whenever I feel my levels are changing.
Maybe its worth taking the trip to see my Doc who is great (about an hour away from you).
He has followed me all the way through this (since June 2008) and my levels are finally coming under control.
I was on 75mcg and kept going Hyper so went down to 62.5mcg and went hyper again! lol.
To cut a long story short, hes got me on 62.5mcg alternating on mon, wed & Fri and 50mcg the other days as I am super drug sensitive.
But my Doc demands to see me every 2-3 weeks until my levels are stable and ok.
My Endo...well what can I say lol ??
She wanted me on 125mcg straight away! And she never returned my calls.
I havent been back to her.
I let my Doctor treat me now as I find its easier to get hold of him than the Endo and also because my Doctors Mother has Graves and has had RAI too and he says he is learning from me all the time.
We work together as a team though he often jokes about 'which Debbie' hes seeing today lol.
I am either ready to break down in tears, rip his throat out (Graves Hyper Rage) or the 'nice one' lol :)
The last 6 weeks I have been the nice one so something must be going right.
Gimme a yell if you want his name and address and number...hes about 15 mins out of Melbourne (western subs).
I dont know what to tell you except if you arent happy, then as they say ...'shop elsewhere.'
Thats why I gave my Endo the boot.
I too get my Doc to write me out pathology forms (with a copy to be faxed to me) and get them done whenever I feel my levels are changing.
Maybe its worth taking the trip to see my Doc who is great (about an hour away from you).
He has followed me all the way through this (since June 2008) and my levels are finally coming under control.
I was on 75mcg and kept going Hyper so went down to 62.5mcg and went hyper again! lol.
To cut a long story short, hes got me on 62.5mcg alternating on mon, wed & Fri and 50mcg the other days as I am super drug sensitive.
But my Doc demands to see me every 2-3 weeks until my levels are stable and ok.
My Endo...well what can I say lol ??
She wanted me on 125mcg straight away! And she never returned my calls.
I havent been back to her.
I let my Doctor treat me now as I find its easier to get hold of him than the Endo and also because my Doctors Mother has Graves and has had RAI too and he says he is learning from me all the time.
We work together as a team though he often jokes about 'which Debbie' hes seeing today lol.
I am either ready to break down in tears, rip his throat out (Graves Hyper Rage) or the 'nice one' lol :)
The last 6 weeks I have been the nice one so something must be going right.
Gimme a yell if you want his name and address and number...hes about 15 mins out of Melbourne (western subs).
I dont know what to tell you except if you arent happy, then as they say ...'shop elsewhere.'
Thats why I gave my Endo the boot.
I actually just ask my G.P. he has realised I know more about my illness than he, so he is quite happy to write a pathology request! Lucky me in that sense, but really frustrating in another! If I go to him tomorrow, and say I am depressed he will no doubt try to put me on anti-depressants..(ain't goin' there again!) I know full well it's coz I am now hypo, that I am depressed. Been there before being hypo and I DO know my own body and I can see that is what is happening.
I will get him to get me a new pathology request and I know if I tell him I am feeling slightly depressed and maybe I am becoming hypo, he will listen and be full of enthusiasm to see if I am right. But god forbid if I say I AM depressed..Earlier in the year he ordered me to go see a counselor to sort out my problems...so I am really keen to prove him wrong again.. hee hee.
Thanks Barb for caring..means a lot to me!
I will get him to get me a new pathology request and I know if I tell him I am feeling slightly depressed and maybe I am becoming hypo, he will listen and be full of enthusiasm to see if I am right. But god forbid if I say I AM depressed..Earlier in the year he ordered me to go see a counselor to sort out my problems...so I am really keen to prove him wrong again.. hee hee.
Thanks Barb for caring..means a lot to me!
COMMUNITY LEADER
I'm very sorry to hear that your appt went so badly, as I remember you saying you thought this new endo was going to be good. His attitude sounds so much like what I've been through with my PCP. My ENT finally referred me to an endo, but I'm beginning to wonder if that's going to be any better than my PCP.
Where do you get the blood work done without an order from your doctor? The lab I have to go to won't do any testing without a doctor's order. I've seen websites from which kits can be ordered, but are the results accurate? I know if I go anywhere except to the designated lab, my insurance won't pay for it, but I'm thinking that it would be worth it to pay for it out of pocket - at least I could get the tests I need, when I need them.
I'm finding that the more I try to be active in my treatment, the worse the doctor behaves toward me - like he doesn't want me to ask questions, make suggestions, etc. My PCP has begun treating me like a hypochondriac or something and is totally uninterested in looking at anything other than the numbers on the lab report.
I hope you get to feeling better and your depression eases. I wish there was something more I could do to help.
Where do you get the blood work done without an order from your doctor? The lab I have to go to won't do any testing without a doctor's order. I've seen websites from which kits can be ordered, but are the results accurate? I know if I go anywhere except to the designated lab, my insurance won't pay for it, but I'm thinking that it would be worth it to pay for it out of pocket - at least I could get the tests I need, when I need them.
I'm finding that the more I try to be active in my treatment, the worse the doctor behaves toward me - like he doesn't want me to ask questions, make suggestions, etc. My PCP has begun treating me like a hypochondriac or something and is totally uninterested in looking at anything other than the numbers on the lab report.
I hope you get to feeling better and your depression eases. I wish there was something more I could do to help.
This is a new endo. I have only seen him twice. I had been seeing my surgeon since I had the thyroid out Dec last year. He's supposedly the top one in his field! I get the tests done every 6 weeks regardless of who I see...I monitor my own health very well, which is why I get shirty that the docs just keep putting me off!
You need to get blood tests done to check thyroid levels. Your doctor is so wrong not to be monitoring! At your stage you should be tested for thyroid every 6 weeks or so, not in 3 or 4 months.
Can you find a new dr? Definitely you need someone to take a look through fresh eyes.
Can you find a new dr? Definitely you need someone to take a look through fresh eyes.
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