The THYROID Thread

[luvmarypoppins]

mickeymouse - glad the ultrasound is done. I am sure it wont get too long to get the results. Wishing you all the best.

Well I scheduled the reclast infusion for April 2. Now I have to coordinate the blood test and bone scan and sono too. My head spins. Add in the week off for the vacation etc.

Last night I finally made the rest of the adrs. I scored another Be Our Guest dinner the other week at like 2 am again. Hmm, seems to be my magic adr time. We are eating at Chefs, Rose And Crown, Hollywood and Vine (Yuck, my ds wanted this), Cape May (for my ever loving crab legs dh and maybe one of the ds, youngest ds hates seafood. I hope he can survive the smell in there), and BOG. I want to maybe do lunch with just dh at Liberty Tree and maybe Akershus because he is dying for Norwegian food.

Now also I have to wait and see about ds ortho appt. next week. Oh and he got his blood results back and his vit d is really low, hmm, no surprise there. His echo is wed. and he goes to the ortho on tues. So that day we will see what his weightbearing and activities are. I am thinking about getting him either a wheelchair or a scooter if need be. Because I am sure the other ds will be aggravated with him not keeping up etc. Also I am holding off on buying their tickets because to see if he can do all the water park stuff etc. Add to this my dh will be away next week in Calif. My head spins, lol.

Micayla - hope all is well with you and your little boy. I miss you posting!

Christine - any word of your med yet? I finished that book and put up a review on good reads. I gave it 4 stars. I think I will be back into another amish fiction until my new book I won from goodreads arrives.

Check in when you can everyone.

 

[angwill]

mickeymouse, I always seem to have to call my doctor for test results instead of him calling me so if you get antsy call and ask. The hospital I used is excellent at getting the results of any test to the doctor within 24 hours here. Heck I found out I had cancer right after walking in the door after my biopsy. Good luck and let us know how it goes.

LMP,
It is my turn for all the tests too. Got all my bloodwork yesterday and it is time for the 6 month ultrasound, thyrogluoblulin pannel with I-123 whole body scan. Dr. wants me to take thyrogen but I might have to go through hypohell again instead. That was the worst part of having cancer for me.

I finally got healthcare due to the affordable healthcare plan. Not so affordable after all with a $6000 per person deductible so for cost sake I might not get thyrogen because pharmacies don't take payments. lol

For anyone who has had thyrogen did you have to get it from a pharmacy or did the doctor or hospital supply it?

I do hope all your tests come back perfect LMP and that your whole family enjoys your trip. Wish I had one to plan and get my mind off things too.

Micayla, I hope you are having the time of your life loving your new little boy.

Ang

 

[Christine]

angwill,

For the Thyrogen, my doctor arranged for it using a special type of pharmacy. They delivered it directly to the doctor but my prescription benefits of my health insurance paid for it. Believe it or not, because it fell under my prescription plan, I had a $25 copay.

LMP - Still waiting on Levoxyl. CVS claims they can't get it. I finally got mad and called Pfizer directly. They were disgusted and said they are hearing a lot of it and it's basically lazy pharmacy distributors who won't pick up the phone and ask Pfizer for a "drop shipment." So the Pfizer rep called my CVS branch and told them what to do. They said they were going to do it so I will be checking with them on Monday.

 

[angwill]

angwill,

For the Thyrogen, my doctor arranged for it using a special type of pharmacy. They delivered it directly to the doctor but my prescription benefits of my health insurance paid for it. Believe it or not, because it fell under my prescription plan, I had a $25 copay.

LMP - Still waiting on Levoxyl. CVS claims they can't get it. I finally got mad and called Pfizer directly. They were disgusted and said they are hearing a lot of it and it's basically lazy pharmacy distributors who won't pick up the phone and ask Pfizer for a "drop shipment." So the Pfizer rep called my CVS branch and told them what to do. They said they were going to do it so I will be checking with them on Monday.

Oh wow, here I was thinking the local pharmacy would have it. lol My plan is $6000 deductible for everything including prescriptions before the copays kick in. I think I may be SOL but if I reach the $6,000 my next 6 month scan would be this year and might be covered then. Thanks for the info.

That is great about the Levoxyl. I am a caller and checker too and it is amazing how lazy some people can be about doing their own job. There is no reason CVS couldn't make that call themselves if they want to retain customers either.

Ang

 

[luvmarypoppins]

ang - My onc. is like the 4th largest thyrogen user in the US or close to that number. She never runs out she says. But I have read on the thy ca website that there are ways to get the thyrogen. I dont think regular pharmacies stock it. Sometimes your dr./clinic is can do a buy and bill to the ins.company, but it seems like you would be responsible for the payment anyway, but they could obtain it for you. I thought I read somewhere that is like $1,300 for the 2 shots.

I know when I had to get the reclast infusion I called cvs nd they told me they stock no iv solutions etc. So you have to know the system so to speak and I know there are posts on thy ca about how to order it from the middle man supplier etc. As Christine said, it seems like some of the pharmacies are clueless about stuff.

Also I think I will be dealing with this high ins stuff for our ds. He will only be on our ins. for another 2 years. I cant see him getting any good ins for sure. So with all his medical conditions and meds I think I will look into this. Our state has some health program. I am definitly going to buy him the best ins since we already knows his bones break easily etc.

Well I am glad I did my online research, I saw the one place I was going to get the bone scan tomm. does not do them at that office. They do them at another office. The one I go to is walk in, I dont know if you can do that at the other one. I might call them in the morning and see. If not, I will go to my usual place next week prob.

Ang - how many clean scans does your dr. want? My onc. said 2 clean scans and that was it for the scanning. Also I had to do the diet again when I had the follow up scan and get the thyrogen shots again too.

If you have never done thyrogen before, the first time you have them the side effects are usually a bad headache and I felt a little nauseous. I wanted jello and soup but of course couldnt have them since i was on the LID . The 2nd time i had the shots I only had a slight headache and just a little queasiness.

Wishing yo all the best. I know my one scan had a pretty high number. I think they let you go up to 4? I cant remember the number. But my onc. said something like 4 was her limit of acceptable. She though my high number wad due to a salivary shadow??? My second scan was great she said. I think that was the one year one. I would have to look up those old posts.

I am dong the vacation countdown for sure. Now my dh says he is going around the world from Aug. 3-17. He has to go to Beijing, then through Moscow to Siberia and St. Petersberg. I feel like he is on the Amazing Race, lol!

Christine - how did your dd make out with all that room mate mess? Hope it worked out for her.

 

[Christine]

Christine - how did your dd make out with all that room mate mess? Hope it worked out for her.

That mess is still ongoing. They never got served papers and one of the girls is trying to get her money together. I guess it's just wait and see now.

 

[angwill]

LMP,

I had no clue how thyrogen was distributed and by assumption I thought pharmacy. You ladies know a lot more than I. It is sounding like they would just bill me and as long as they take payments I won't have to fear hypohell again. Bringing it here has eleviated my anxiety over it.

I am not sure what you know of using the ACA for your son? Poor kid breaking bones easily. That has to be hard to watch as a mom. If you have any questions at all feel free to message me. I think I have got it as figured out as can be in factual info and not rumor.

I have learned to call ahead about just about everything. With a 45 min to an hour drive to get testing done it is worth the call instead of a wasted trip. I hope it works out for you with the offices and scans.

You know I don't know if my doctor said or I read 5 years of 6 month scans and then 1 per year. That might have been ultrasounds and not WBS though. I am going to call the office and ask because I read too much and it all gets jumbled in my brain. I am the one with the hospital with nuclear med guys and doctors that don't believe the low sodium diet is necessary. I did watch my sodium and the food I was eating but did not sweat it. I didn't worry about the chicken brine since there is nowhere anywhere near me that sells chicken not in brine and that kind of thing. To be honest I think that worked best for me because I am someone who would obsess and while in hypohell that would have been awful for me.

Thanks for the heads up on the thyrogen side effects. I rarely get headaches but might just take an Aleve before just in case. The RAI even in small dose makes me very nauseated. I thought I was going to have a toxic mess and lose the effects of the radiation. I never had stomach issues till Radiation treatment and my stomach is still seriously messed up since then. I will take headache and nausea over hypohell anyday.

We never talked scan numbers but I know they were concerned about it showing up in one of my arm pits but someone, probably you, said it could be a ghost shadow so I am not too worried. He did do a thyroid cancer marker test and gave me the results today and said my antibodies are slightly high at 105 but he said it is nothing to worry about and in a year that should be down but they wouldn't worry till then if it doesn't go down or gets worse. My calcium is low again too so I will be taking 3 over the counter pills a day now. Also my T4 was off so I have to cut back on my synthroid and take half the dose one day a week.

It does sound like your husband is on the amazing race. lol I hope he gets to enjoy those destinations a bit. Do you ever travel with him? How does he not just want to come home and vegitate at home and instead goes to Disney and runs around the parks? lol

Christine, Roomates are a PITA sometimes and not all are honest people. I am glad those days are over. Hope it gets resolved fast for your DD.

Ang

 

[luvmarypoppins]

mickeymouse - have you gotten your test results back yet? Wishing you all the best.

Well I called today to make the bone scan appt. Thank heavens I called the place I usually go to. I was thinking of going somewhere else. Well she says, oh your ins. co. will only cover every 2 years and that will be in Sept!. Hmm, the dr. told me to get it now etc. I said well what if its medically necessary etc. So now I have to call the endo and see if she def. wants me to get it before the infusion. Oh my head spins.

My neck has been really bothering me lately on the dissection side. The pain goes up the back of my neck to the skull base. I am grumpy etc.

Also my dh said, hmm the L side of your face looks puffy. O.K.

At least a week from today we will be in Disney. Hope the weather cooperates.

Ds2 went to the ortho today. His foot is till not healing and now he has gotten a bone stimulator. He said he will crutch around disney? I asked if he wants a scooter or wheelchair. He is in class so I cant get all the details etc. This is not the news I wanted to hear. Not about the vacation stuff per se, just the non healing stuff. I am getting concerned for sure and maybe thinking of a second opinion etc.

I made a typo before and my dh is actually going on that trip april 4th and now he is taking ds1 with him on the china leg and he will fly back himself (ds). With all this going on, I am not liking this decision. My dh is flying to places too much in the news lately etc.

Check in when you can.

 

[angwill]

mickeymouse - have you gotten your test results back yet? Wishing you all the best.

Well I called today to make the bone scan appt. Thank heavens I called the place I usually go to. I was thinking of going somewhere else. Well she says, oh your ins. co. will only cover every 2 years and that will be in Sept!. Hmm, the dr. told me to get it now etc. I said well what if its medically necessary etc. So now I have to call the endo and see if she def. wants me to get it before the infusion. Oh my head spins.

My neck has been really bothering me lately on the dissection side. The pain goes up the back of my neck to the skull base. I am grumpy etc.

Also my dh said, hmm the L side of your face looks puffy. O.K.

At least a week from today we will be in Disney. Hope the weather cooperates.

Ds2 went to the ortho today. His foot is till not healing and now he has gotten a bone stimulator. He said he will crutch around disney? I asked if he wants a scooter or wheelchair. He is in class so I cant get all the details etc. This is not the news I wanted to hear. Not about the vacation stuff per se, just the non healing stuff. I am getting concerned for sure and maybe thinking of a second opinion etc.

I made a typo before and my dh is actually going on that trip april 4th and now he is taking ds1 with him on the china leg and he will fly back himself (ds). With all this going on, I am not liking this decision. My dh is flying to places too much in the news lately etc.

Check in when you can.

LMP,
So glad to hear you made that call and that they knew enough to know how your insurance pays. I hope the test can wait.

I hope you doctor can get to the bottom of your pain. Oddly, I noticed the other day I had what felt like two swollen lumps on my neck just below the back of my ear. They aren't swollen anymore but I did wonder if it is from the RAI. No pain with mine thankfully. I hate hearing your in that much pain and hope it goes away fast before your trip.

Your poor son I bet it is harder watching him go through what he goes through than it is what you go through with your health issues. I bet he would enjoy himself so much more with a scooter. I don't think anyone could handle a day in Disney on crutches.

I hope all goes well with DS1 going with DH but I am sure your DH will keep a close eye on him.

Enjoy your trip.

 

[mickeymouse108]

LMP,
So glad to hear you made that call and that they knew enough to know how your insurance pays. I hope the test can wait.

I hope you doctor can get to the bottom of your pain. Oddly, I noticed the other day I had what felt like two swollen lumps on my neck just below the back of my ear. They aren't swollen anymore but I did wonder if it is from the RAI. No pain with mine thankfully. I hate hearing your in that much pain and hope it goes away fast before your trip.

Your poor son I bet it is harder watching him go through what he goes through than it is what you go through with your health issues. I bet he would enjoy himself so much more with a scooter. I don't think anyone could handle a day in Disney on crutches.

I hope all goes well with DS1 going with DH but I am sure your DH will keep a close eye on him.

Enjoy your trip.

I finally got my results on Monday I had to wait all weekend. it was so hard waiting I ended up having to call my doctor she had Friday off that is why she did not call me it is ok for now, they found several nodules but all are very small too small to biopsy and all are normal shape my thyroid is normal size so for now looks benign but we will keep an eye on it. so happy about this I asked about blood work and she had done some on physical. the blood work shows my thyroid fine. but having read about how some blood work is not the right test if you have any advise on what to ask for I would appreciate it.

sorry it took so long to post it has been very busy here my older daughter was home from college I only see her only on breaks because she is too far away to come home otherwise. and over the weekend I was waiting for results we were in Vermont visiting my husbands parents so my daughters could see them my father in law has been told he has less than a year to live so we have been making the three and a half hour trip once a month to see him. he has mylo dysplasia and at 77 years old they do not do the only thing that could make him better a bone marrow transplant because they say too old so he gets blood transfusions every week just to keep him alive along with chemo that is really not helping much its not cancer so chemo really is only supposed to make it so he needs less transfusions but he ends up going at least once a week for one sometimes two if he stops getting them he would die in a couple of weeks.

well I hope everyone is doing well and thanks for your support.

 

[angwill]

I finally got my results on Monday I had to wait all weekend. it was so hard waiting I ended up having to call my doctor she had Friday off that is why she did not call me it is ok for now, they found several nodules but all are very small too small to biopsy and all are normal shape my thyroid is normal size so for now looks benign but we will keep an eye on it. so happy about this I asked about blood work and she had done some on physical. the blood work shows my thyroid fine. but having read about how some blood work is not the right test if you have any advise on what to ask for I would appreciate it.

sorry it took so long to post it has been very busy here my older daughter was home from college I only see her only on breaks because she is too far away to come home otherwise. and over the weekend I was waiting for results we were in Vermont visiting my husbands parents so my daughters could see them my father in law has been told he has less than a year to live so we have been making the three and a half hour trip once a month to see him. he has mylo dysplasia and at 77 years old they do not do the only thing that could make him better a bone marrow transplant because they say too old so he gets blood transfusions every week just to keep him alive along with chemo that is really not helping much its not cancer so chemo really is only supposed to make it so he needs less transfusions but he ends up going at least once a week for one sometimes two if he stops getting them he would die in a couple of weeks.

well I hope everyone is doing well and thanks for your support.

That is wonderful news. So glad it worked out in your favor. I have read in more than one place that multiple nodules seem to be benign more often than one large one like I had.

They will most likely just want to check your TSH level for thyroid issues but there is also a T3, T3-free, and T4 that they do less often and usually when you have thyroid issues. I am sure others will have suggestions.

So sad to hear about your FIL. It has to really suck to fight for extra time all the while getting Chemo and feeling like crap during that extra time. Poor guy. I suppose your visits keep it worth the fight though.

Ang

 

[angwill]

A little update on my 6 month checks. I am almost 2 weeks out from when the doctor sent me for my tests. I was waiting to find out if my new insurance would cover the thyrogen shot so I don't have to suffer through hypohell and the adjusting back to meds. I got a call on Friday that they will cover them after my $6000 deductible and I said well since they cost $2400 for a kit of 4 shots and I only need two then $1200 won't be covered. I had called the company about the price and where I could get them. I was told oh no they are not $1200 they are $10,000 for the two shots. I thought she was joking but that must be their mark up. No wonder why health insurance is so outrageous. When I had no insurance last year because I was deemed uninsurable and couldn't get any I should have figured out the mark up. I would get bills from the hospital for my labs for $2000 but because I didn't have insurance they would send the bill to the lab to charge me and I would end up with a bill for $100 instead of $2000. Now I know why. So now that I have insurance I no longer get the regular price I get the 10-20 times inflated insurance price. Well with a $6000 deductible for a $600 per month policy I now know I was better off without insurance. They said they will no longer see anyone without cash up front if they don't have any insurance as of 1/1/13. Boy they are going to make out like bandits. Oh I did find a cancer charity willing to help with $1500 toward the thyrogen shots based on income but the hospital said they will not allow me to buy my own shots due to the possiblity of tampering. I said then I will give myself the shots they are only intermuscular. I was told they won't scan me if I do that. What a racket. So now I am not sure what I am going to do. Friday with that phone call was the first time I really broke down through all this thyroid cancer stuff.

Ang

 

[Christine]

A little update on my 6 month checks. I am almost 2 weeks out from when the doctor sent me for my tests. I was waiting to find out if my new insurance would cover the thyrogen shot so I don't have to suffer through hypohell and the adjusting back to meds. I got a call on Friday that they will cover them after my $6000 deductible and I said well since they cost $2400 for a kit of 4 shots and I only need two then $1200 won't be covered. I had called the company about the price and where I could get them. I was told oh no they are not $1200 they are $10,000 for the two shots. I thought she was joking but that must be their mark up. No wonder why health insurance is so outrageous. When I had no insurance last year because I was deemed uninsurable and couldn't get any I should have figured out the mark up. I would get bills from the hospital for my labs for $2000 but because I didn't have insurance they would send the bill to the lab to charge me and I would end up with a bill for $100 instead of $2000. Now I know why. So now that I have insurance I no longer get the regular price I get the 10-20 times inflated insurance price. Well with a $6000 deductible for a $600 per month policy I now know I was better off without insurance. They said they will no longer see anyone without cash up front if they don't have any insurance as of 1/1/13. Boy they are going to make out like bandits. Oh I did find a cancer charity willing to help with $1500 toward the thyrogen shots based on income but the hospital said they will not allow me to buy my own shots due to the possiblity of tampering. I said then I will give myself the shots they are only intermuscular. I was told they won't scan me if I do that. What a racket. So now I am not sure what I am going to do. Friday with that phone call was the first time I really broke down through all this thyroid cancer stuff.

Ang

That just doesn't seem right. I have insurance. When I got the thyrogen shots, I did see the "real" price which seemed to be around $1300. I then saw my copay of $25.00 broken out. So, even though I had insurance, I never got some sort of upcharge on it. But, it's been many years since I had it so who knows what could have happened.

My suggestion would be for you to work very closely with your doctor and try the "hypo hell." When I did it, I had some barbaric physician who insisted on the 6 weeks and my TSH got to 148. When I got a new doctor and he saw that I was a "fast" riser, he let me go at 4 weeks. Your TSH does not need to be sky high and you miserable. Many nuclear physicians will accept a level of 40 and some are at 70. While that seems high, those levels are manageable, especially if you can get your doctor to give you Cytomel for a week or so.

 

[luvmarypoppins]

mickeymouse - so happy to hear your good news! Congrats!

ang - can you buy and bill from the hosp. pharmacy? I dont know what their cost versus markup would be. Hopefully they would charge you cost. Sorry they wont let you obtain the med yourself. But glad you found the cancer place that is willing to help you. I am sure it is so frstrating when you want to concentrate on your health. My endo says stress is not good for this cancer.

Well speaking of stress... Can I just say again I hate, hate, hate electronic prescriptions. So of course I am getting ready for my trip. Need a bp med refill. Call the pharm because I am sure the endo ordered it from my last visit. He looks this morning and says, um, no not that one for you. . So he says he is faxing the dr. today. I should call them tomm. morning asap if I need it by tomm night. So I will call and then leave that message about the bone scan too. I need this right now like a hole in the head. If it doesnt work out I will miss a pill on saturday and be back on sunday and have my oldest ds pick it up before we get home.

I think the lesson I have learned from all of this is the next time I have an endo visit I will just not say I need the refills and she will type away. I will name them and ask about each one etc and do the final count etc.

I was going to pack but I took a nap instead. I was so stressed out from a meeting I had this week and the issues that are gong along with it. Worse, I had to write up the minutes for the secretary and it got me more stressed by what I had to write, sigh.

It will rain when we arrive in FL on tues. but it will be nice the rest of the week. I want to get in some swimming time for sure.

I will be packing. At least it wont be a lot so that is good.

Christine - I am now reading a historical fiction about WWI. Won it from goodreads and got an e mail that I won 2 more books too, yay.

Check in when you can.

 

[angwill]

That just doesn't seem right. I have insurance. When I got the thyrogen shots, I did see the "real" price which seemed to be around $1300. I then saw my copay of $25.00 broken out. So, even though I had insurance, I never got some sort of upcharge on it. But, it's been many years since I had it so who knows what could have happened.

My suggestion would be for you to work very closely with your doctor and try the "hypo hell." When I did it, I had some barbaric physician who insisted on the 6 weeks and my TSH got to 148. When I got a new doctor and he saw that I was a "fast" riser, he let me go at 4 weeks. Your TSH does not need to be sky high and you miserable. Many nuclear physicians will accept a level of 40 and some are at 70. While that seems high, those levels are manageable, especially if you can get your doctor to give you Cytomel for a week or so.

The only reason I know the real prices vs what the hospital bills insurance and me is because last year I had no insurance and negotiated the prices. So I would get their bill and then call them and would then recieve a bill from the lab company, or some other outside career depending on what they were billing for that was always 10 times less than the hospital originally billed me.

Then with the thyrogen I had researched the cost online as well as calling genzyme the mfg and getting it right from them after the hospital told me I was wrong and I can not believe people on the internet. I even went to needy meds and priced it through Good RX to double check the price. The cancer center pharmacist told the nurse who called me that they charge $10,000 and while researching there are others who's insurance is being billed anywhere from $7,000-$15,000. I wonder if your insurance is one of those that negotiates prices at a reasonable and customary price and mine doesn't bother figuring with a $6000 deductible we won't ever use it?

If I remember correctly my dr tested my TSH 2 weeks post surgery and I was already in the upper 70's or 80's and miserable as all hell. I set up my RAI and scans at that time and that was about 4 weeks post surgery. So even not going the 6 weeks I felt awful. I also started getting really awful muscle and abdominal cramping and really painful joint pain especially in my shoulders. My husband and son refused to even pick up after themselves and just didn't get it which didn't help. I will ask about the Cytomel if I don't go with the thyrogen.

 

[angwill]

mickeymouse - so happy to hear your good news! Congrats!

ang - can you buy and bill from the hosp. pharmacy? I dont know what their cost versus markup would be. Hopefully they would charge you cost. Sorry they wont let you obtain the med yourself. But glad you found the cancer place that is willing to help you. I am sure it is so frstrating when you want to concentrate on your health. My endo says stress is not good for this cancer.

Well speaking of stress... Can I just say again I hate, hate, hate electronic prescriptions. So of course I am getting ready for my trip. Need a bp med refill. Call the pharm because I am sure the endo ordered it from my last visit. He looks this morning and says, um, no not that one for you. . So he says he is faxing the dr. today. I should call them tomm. morning asap if I need it by tomm night. So I will call and then leave that message about the bone scan too. I need this right now like a hole in the head. If it doesnt work out I will miss a pill on saturday and be back on sunday and have my oldest ds pick it up before we get home.

I think the lesson I have learned from all of this is the next time I have an endo visit I will just not say I need the refills and she will type away. I will name them and ask about each one etc and do the final count etc.

I was going to pack but I took a nap instead. I was so stressed out from a meeting I had this week and the issues that are gong along with it. Worse, I had to write up the minutes for the secretary and it got me more stressed by what I had to write, sigh.

It will rain when we arrive in FL on tues. but it will be nice the rest of the week. I want to get in some swimming time for sure.

I will be packing. At least it wont be a lot so that is good.

Christine - I am now reading a historical fiction about WWI. Won it from goodreads and got an e mail that I won 2 more books too, yay.

Check in when you can.

I don't know what buying and billing from the pharmacy is but the nurse at the cancer center that I talked to did say she was going to go to the pharmacist herself and see if there are any alternate ways for me to get the meds at a lower cost. The billing department told me there was no way. I am calling in for the costs of all my tests, shots everything tomorrow morning. I have a pretty good idea that I will be way over $6000 with what I need done like it or not. I was told they no longer negotiate lower bills like they did with me last year because everyone is expected to have insurance as of the 1st of the year with the ACA. If I didn't have insurance they wouldn't even schedule me for anything there. I will let you know when I talk to them again this week if anything changes. I know some people who figure they pay less negotiating their bills and paying out of pocket for medical care are going to be in trouble this year if they need care. Then again maybe not all hospitals work the same way? Mine is a not for profit though so I doubt it since NFP are usually more accomodating.

As for stress between my health, insurance and my son is going through a bad phase right now my stess is through the roof. I wonder if I would even survive hypohell with where I am on the stress scale right now? Can I come with you to Florida? lol

I am sorry you are going through so much stress right now. I hate when they get my scripts wrong too and what a PITA calling and trying to get ahold of someone before you run out. I always try and get it done about a month ahead of when I run out so I always have extra just in case. It does help to ask for the meds and then ask if they can take a minute to go over them with you to make sure they ordered the right things. I hope it all goes well and you get that script tomorrow. Then I hope you get the sun and fun in at WDW so you are nice and stress free fast.

 

[luvmarypoppins]

Hi from the Beach club and so nice and warm sunny florida!

Tomm. is our last full day. We have been having a good time. Of course I am interested i the food. So far we ate ate Chefs, Rose and Crown (scored a great illuminations table - my ds loved it!, then Hollywood and Vine - surprisingly it was pretty good and tonight Cape May for my dh crab coma and the ds went crab crazy too. So far we swam in storm along bay once. My ds is getting around with his walking boot but said his ankle hurts. He got to see one of his friends from high school who is in college program.

We saw the new magic kingdom parade. It was cute. Tomm. we are eating at Be Our Guest again. I want to look at the flower and garden show more. Of course when you are in Disney you never have enough time to see everything of course.

Also before I left I had to resort to faxing a letter to the endo about my med and that bone scan because no one bothered to call me back etc.

Well the endo herself called me on my cell and lelft a message. She got me the script and she told me to wait for the bone scan until sept. for when my ins. will cover it etc. How sweet of her. Gosh l love that dr. she actually treats you like a real human being!

 

[luvmarypoppins]

ang - any thyrogen updates for us? Hope you were able to get it.

Well the vacation is over. We went from 80 degrees to about 40. Now we are having snow here tonight. Of course we all want to be back in Fl. We got to swim in storm along bay again. I have learned not to take ds2 on vacation with us again. He is just so moody and uncooperative. I wonder about ds3 too. He was always pushing to do so much and I cant keep up with all of that. We walked from the Swan to Epcot. That is a lot of walking for me all at once. Thank goodness I had the whelchair to hold onto etc.

Today I got the blood test because the infusion is next week. The endo wrote on the blood test script. Get in early April. So the tech says, well I cant do this test until early April. I have to honor what is written etc. I said, its just a note she wrote on there to remind me etc. Geesh. She did let me have the test. Nice as my endo wrote notes on all my other stuff too, like do in 6 months etc. Ds told me to say I wrote it the next time. There are no signatures just a printed handwritten notation.

Now to schedule the sono. I am really behind with that one.

Hope everyone is doing well. Check in when you can.

I forgot to book a bounceback when we were there. Oh well, since my dh is going around the world next week I know we will have lots of more miles adding up. I will use them for the Swan if we can get a room next time. Its a better bargain and uses less miles than the beach club for sure. We dont use the magical express and we dont care about the magic band stuff either. Also by then, probably december or food and wine time, ds3 will have his nursing license, so I know they give discounts for that so I will look into that too Only problem is that is when the baseball winter meetings are if they decide to have them there again. So rooms might be hard to come by etc.

 

[luvmarypoppins]

Well I have another slight cold,cough,congestion. Not as bad as last time yet, but I have a pain in the back of my throat. At least it really isint hurting by the dissection like it was last time for now.

Ds 2 ortho asked him to get an xray before he went for his visit on wed because there xray machine would be down. So he went today and brought home the xrays. We looked at them and sure enough the bone is still broken and not healed. I dont know what the dr. is going to do. Ds said he did mention surgery. Oh and today ds decides to go put his bone stimulator machine back . sigh. Then I asked him if he called about his echo results and he said no. I wish he would be a little more responsible with his health care. I am going to go with the no news is good news right now since we havent heard from the dr. by phone or letter at present.

Wed. I am getting my infusion and then next sat. my dh is leaving for his 17 day trip to china and russia. Ds1 is going with him for the china leg.

Check in when you can. Hope everyone is doing well.

 

[Christine]

luvmarypoppins--sorry to hear about your cold. I've been "lucky" this year. I mainly don't catch anything because I don't do much! Work, sleep, clean the house. I'm just not around a lot of people. My coworkers, though, seem to get hit with everything, but they are fairly social and are amongst crowds all the time so, there you go. I think maybe you're having too much fun!

I know it has got to be stressful about your son. I remember last year when my son broke his finger. It was a complex break at the fingertip (very weird) and the bone was totally severed. I was really getting panicky because the darn thing would just not seem to bond together. We were at the ortho every 3 weeks for an x-ray and it was getting to the point that I could see the alarm int he doctor's eyes. But *finally* we got something. That bone took about 8 months to finally resolve.

I've been doing okay. I have been on Levoxyl for a full two weeks now. I do think that my anxiety levels have come down a notch. They are still there but a bit more manageable. The good thing is that now that I am back on my usual thyroid medication, I have a good idea of what is medication related and what is just due to some sort of PTSD. I am still having issues with that oddly enough. I am unable to drive on the highways since the shooting and I have problems in meetings at work with focused groups. The whole thing is really quite baffling to me but now that I've got the thyroid stuff sorted out, I feel like I can pursue the other issues without some nagging doubt in my mind that the medications are causing issues.

My DD graduates college in May so I will have her back home on a more permanent basis. My son will be home too during the summer break so it's going to be an interesting summer.

They all want to go to Disney but I think I'm going to put it off until next year (maybe when my son turns 21 in December 2015). We've never been in December so I'd like to try that.