[cathycnm]

#1069878

Rhonda – I have done leadership in healthcare for over 20 years and this smells of economics, to me. At least saying they don’t need an endo. Just a guess, but as healthcare goes through this transformation, no doubt there is a ton of numbers crunching. Where can they cut $? I am sure there are ratios of the population base needed to support an endo and stay in the black.

I live in a rural community and I have to travel over an hour to my endo. For years, he was the only choice in the whole western half of the State. Now there are a handful of others within a 1/2 day drive. It is hard – but I know he is the better one to be following my Grave’s and osteoporosis. I love my PCP but she does not have his wisdom and I am afraid things will slip through the cracks.

That said – how far would you need to drive to see an endo??? I am a nurse practitioner and have high respect for the non-physician practitioners – and it may will be within the PA’s scope to follow someone with a stable thyroid. Still, Graves influences so much and, no, RAI is not a cure (I love that one). I think it is important to have an endo on that team even if it means travel. BTW – my endo is willing to do some of the lab follow-up via phone – he always calls me directly if I have a new diagnosis. That has helped with the gas bill – so you might ask if the nearby endos could work with you and do somethings via phone. Let us know.

[RhondaG4]

#1069879

Well I think the thing that shocked me the most is that he…the ENDO..is moving out of state to practice elsewhere. So unless he has been asked by the hospital to say this, it doesn’t make sense to me. We have 2 Endo’s left in Wyoming…both are about a 4 hour drive one way. The really funny part to me is…my labs were normal right before I had the RAI..and they are normal now. My heart rate is still really high, so I would like to know what makes him think the RAI worked? He told the resident that was following him around today that I was one of the rare ones that enough of my thyroid had survived to keep my levels normal. Well okie dokie. Guess as long as my levels stay normal, as you said with budget cuts and such, I’m guessing nobody will do an uptake test to check to see if the RAI actually worked or not, and it’s only been since April that I had it done, and I’ve heard alot of people say it can take up to 6 months for the thyroid to die off.

I’m thinking maybe I should find a book for my PA that explains the stuff that can go on after the RAI…the TED and Myoexdema…I’d like to find one that has the rare side effects of Graves in it also, as my body seems to not be what a "normal" persons is. The brain bleed after having my 2 year old and stroke from that, cervical dysplasia, Osteopenia, Graves..and God only knows what’s next. I’d gladly give my right arm if someone could guarentee me health for the rest of my life. So sick of Dr.s and tests!!!!!!!!

[cathycnm]

#1069880

Rhonda – Where in Wyoming? I am in W Colorado and my mom grew up in Rawlins. My family have lived all over Wyo and CO for many generations now.

On the surprize – I think there are a lot of practices that are being bought out by hospitals, etc. Who knows who owns what. On top of that – the HMOs can decide how many of which specialist they want on their panal. And, on top of that – there is good old politics. (Not in the West!) So, it is anyone’s guess what is happening – I can see why it would be a surprize.

Good idea on educating your PA. I know a little about their training from being involved as a faculty once. I think they are the supreme jacks-of-all trades – and their real strength is doing office procedures.

I am unclear from your post if you plan to find an endo who could even see you occasionally to follow with the PA. It sounds like your case needs to be followed by someone in the know. If you could get to Grand Junction – my endo is excellent and I would be happy to give you his name if you send me a message. There are also a lot of good ones in Denver if that is closer. C

[RhondaG4]

#1019180

Went for my last visit today with the Endo that is leaving town and has been treating me. He said my numbers..and I saw the labs…are normal T4 and TSH. Then he said the oddest statement I’d ever heard. When I asked him if they…the hospital…had found a replacement for him…and said no..but that I didn’t need an Endo any longer.

This is the dr that also sent me to the Oncologist/Hemotologist. She ran all kinds of blood work. When I went to see her yesterday, she said that I didn’t have Lupus yet, but wants to see me in 4 months. My ANA came back positive, with titers, but apparently the titers weren’t high enough for a Lupus Dx, and the bloodwork showed that I didn’t have the clotting factors that a person with Lupus would have. Oh, and the titers pattern was speckeled…whatever that means.

So the Endo gave me a referral to a Rhumatologist and a different Neuro doc, since the Neuro doc I have..his LPN was treating my headaches with dexamethasone and keeping me out of the ER, but the Endo doc didn’t want me to have the steroids anymore, so now I’m suffering with the headaches. Hopefully the new Neuro doc can find the cause of the headaches, and treat them and keep me out of the ER.

So now I’m a little more confused then I was before, and just about ready to give it all up and say screw it all. The PA that I’m left with…I love her to death, but seems to think that since I’ve had the RAI, I’m cured. No more Graves. She knows that I have to have lab work once a month, to find out if I’m going hypo. I’m so tired of Dr.s at this point. Thanks for listening. Rhonda

[RhondaG4]

#1069881

Cathy,
Thanks for the response. Yep I am still considering finding another Endo. I’m not sure if I told you that this Endo has referred me to a rhumatologist…excuse my spelling…for other autoimmune stuff. I’m not sure if she would be educated to be able to follow up on the GD??? I am on disability and ofcourse comes along with that…if there isen’t a good reason for me to go to a Endo..like my Endo telling my State insurance that I don’t need an Endo anymore…I may run into problems there. Oh..you asked where in Wyoming…Casper. Thanks for the advice. I need all of it I can get. Hugs Rhonda

[cathycnm]

#1069882

Rhonda – What an interesting experience. I sometimes think "only in the rural west" would things like this happen ” title=”Very Happy” /> Casper is beautiful – I love the wide open spaces of Wyoming. Colorado is getting too popular for me somedays.

I am not that familiar with rheumatologists managing Graves. I think it is certianly your right to ask the new physician how many cases of Graves they handle per year. There is some research that says when a medical provider does less than 50 of something a year, they don’t have as good of outcomes as those who do 50 or more. I can remember a time when, as a nurse practitioner in the rural west, the OB and I split up the IUD and norplants so we would have 50 or each per year. I did norplants for everyone in town – he did IUDs. It kept us both competent to split it like that.

It certianly is true that once we are through RAI and on a pretty stable dose of replacement, it becomes easier for physicians to "manage" us. At one point, my endo talked about going to "problem visits only" with my PCP (an internist) doing primary management. But when my thyroid med needed some fine tuning – she was not sure what to do and sent me back to him. He fixed the problem and put me back on every 6 month visits with him. She is pretty new out of med school (3 years, I think) but I think a more seasoned internist may have known exactly what to do. So, I think a lot of it is the experience of the physician at managing Graves once we are stable. Let us know how it goes up there in windy Wyoming. My aunt use to write for a paper in Lander and I remember her quote about "Why does Wyoming want to be like the rest of the States when the rest of the States want to be like Wyoming." It is different up there!

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