The THYROID Thread

[Christine]

So if you have Mon/Tues thyrogen, then weds. Blood work and tracer dose, when do you have your pre- tracer dose blood tests? The ones for kidney function and pg?

I believe I had mine on Monday.

 

[mrsklamc]

Hope everyone is doing well.

In the mail today I get a letter cancelling my January endo visit due to "unforseen circumstances". Umm, remember what I went through before with the other visit. They said to call and reschedule something. I will call on Monday as I know trying to get a visit with this endo is worse then trying to win the lottery (I dont gamble anyway)

I can't believe they just sent you a letter like that! Wow!

 

[luvmarypoppins]

Micayla - I cant answer your ? because I actually forgot what I did last year. Hmm, I do remember my scan showed 0.5 which wasnt the best but she said she saw worse. I always get to have the pregnancy test after the thyrogen as I just sign a waiver for the rad. onc. I honestly thought we got the results for the one blood test while we were eating breakfast in Kona last year. It was my b day and our anniv. to boot!! She said after the scan I would have to wait a week? Does that seem right?

Well I just called the endo and got a visit close to the other date. If my dh is in china one of the ds can take me as 2 of them will be on college break so that will be good. They are calling me back again to schedule the reclast infusion and I still need the mamo and eye specialist. My head spins. That is why I usually like to keep it down to one dr./test etc. a month.

 

[dischick4778]

So I get my synthroid from my mail order pharmacy and today I got 3 months worth of the wrong dose! My endo is out on maternity leave and the covering physician gave the pharmacy my old dose. The worst part is when I called the endo's office to clarify the receptionist was treating me like I was nuts. She said "well the doctor's notes clearly stated you are to take 224 I don't know why you think otherwise". Hello! I have a new prescription for 200 and have been taking it for a month! It took them all day to figure out that she did change the dose. Thank God I had the scan before she went out on leave, the person covering and the office staff are clearly confused.

Then I call the pharmacy to tell them and they say with approval it is fine and they will send me the new dose. I ask what to do with the wrong meds and they say to throw them out! Can you believe it? That seems like quite a waste of much needed and perfectly good medication that I did not even open. It feels like a sign, and I will definitely hold onto it just in case.

Thanks for listening to my craziness.

 

[luvmarypoppins]

Jenn- wow, cant believe that happened to you and that you have to deal with this. Hmm, looks like everyone is getting their own synthroid stockpile. I only have 15 pills but its better than nothing.

Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc.

Do you notice a difference in how you feel from 224 to 200. With the 200 I was having the faster heartbeat sometimes, sweating which she said was menopause. Never believed that either and now I am not sweating at night or I should say having more like a hot flash and not physically sweating and best part is I am not freaking out emotionally so much.

Here is a ? for everyone. Its from a comment I saw on the thyca. website. On your pathology report does it say either well differentiated or poorly differentiated. They say it is suppose to say one of those 2. So I dug mine out and mine does not say either of those. Did your surgeon, endo, rad. onc. tell you what it was if one of those. Mine only says pap with rare columnar cell etc. distinctively rare, looked at by more than one pathologist and other comments on the other tumor they found on the L side of the neck that no one could figure out what it was.

I am still feeling tired and just fell asleep around 5:30, I am so not liking this.

 

[Christine]

Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc.

I do mail order--mainly for convenience. I use Levoxyl which has a "generic" price structure so if I mailorder, I get 90 days for $20. If I went to the pharmacy, the same amount would cost me $30. I get one month "free" when I mail order. For Synthroid it would be $50 for the 90 day supply and $75 if I got it at the pharmacy.

I do take care to avoid ordering meds over the summer. I will usually order in late May and then in September to avoid the 100 degree days. If for some reason I manage to screw that up, I have my endo write me a prescription for a 30 day supply that I can fill in July if need be.

Here is a ? for everyone. Its from a comment I saw on the thyca. website. On your pathology report does it say either well differentiated or poorly differentiated. They say it is suppose to say one of those 2. So I dug mine out and mine does not say either of those. Did your surgeon, endo, rad. onc. tell you what it was if one of those. Mine only says pap with rare columnar cell etc. distinctively rare, looked at by more than one pathologist and other comments on the other tumor they found on the L side of the neck that no one could figure out what it was.

Yes, even 16 years ago, my report stated "well differentiated". I remember my MIL having a big talk with me about that (she worked at NIH in the endocrine pathology center--handy, huh?) and she explained to me the differences in well differentiated versus plain old differentiated versus poorly differentiated and that it was important to know what you had.

 

[1Grumpy9]

Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc.

My perscription plan prefers us to use mail order, but I will NOT use them. The mail order people sent my father the wrong dosage of synthroid (he looked at it before he took any) and this was just a refill and not a new script. They screwed up two of his medicines on two different occasions. We both have similar plans (he is a retiree). I may pay a little more for my scripts by going to the local Rite Aid, but I haven't had to wait and extra week to get the proper meds. Also, my plan dropped Synthroid as a perferred medicine and I was paying almost $200 for a 90 day supply of meds. Luckily they haven't figured out that this new med I am on shouldn't be covered...LOL!!! So I am only paying $33.00 for a 30 day supply (2 pills a day). Not only is this a savings for me it is also a better med for me.

 

[mrsklamc]

I haven't done mail order only because we were kind of trying to get my dose stabilized before we ordered 90 days worth.

I believe- but I don't remember for sure- that my pathology said well differentiated. I can check if you want- I have copies of EVERYTHING- including my original CT scan film.

 

[dischick4778]

Jenn- wow, cant believe that happened to you and that you have to deal with this. Hmm, looks like everyone is getting their own synthroid stockpile. I only have 15 pills but its better than nothing.

Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc.

Do you notice a difference in how you feel from 224 to 200. With the 200 I was having the faster heartbeat sometimes, sweating which she said was menopause. Never believed that either and now I am not sweating at night or I should say having more like a hot flash and not physically sweating and best part is I am not freaking out emotionally so much.

Here is a ? for everyone. Its from a comment I saw on the thyca. website. On your pathology report does it say either well differentiated or poorly differentiated. They say it is suppose to say one of those 2. So I dug mine out and mine does not say either of those. Did your surgeon, endo, rad. onc. tell you what it was if one of those. Mine only says pap with rare columnar cell etc. distinctively rare, looked at by more than one pathologist and other comments on the other tumor they found on the L side of the neck that no one could figure out what it was.

I am still feeling tired and just fell asleep around 5:30, I am so not liking this.

I was resistant to do the mail order for a long time. However, they make it so hard not to. If I get a prescription more than twice from my local pharmacy the cost goes from $5 to $10 per month because the insurance knows its a monthly thing and they want you to use the mail order. Through the mail order I pay $10 for 3 months worth. So it's a lot of money when you think about the fact that I have 3 monthly prescriptions. Instead of $30 per month I am now paying $30 for 3 months worth of meds. So far no problems other than the wrong dose which was really the doctor's fault.

I don't feel much of a difference in the dose yet. I am still short fused and anxious. I keep waiting for some miracle calm to come over me. Lol.

 

[luvmarypoppins]

Hi everyone!

Micayla - are you doing the diet now??? Sorry, I forgot. Well if you are, did you try that pesto/avocado pasta dish you posted. It looked really good.

My dh just complimented me on my wonderful behavior in the car. He said that medicine is really working. Yes it is!! I dont freak out too much anymore when people are driving. So he is happy and so am I. Good because we are leaving on a nice little vacation, just he two of us, to the amish country in penn. on tuesday and we are coming back sun. I am going to visit my aunt and uncle in NJ back and forth on the way.

They have still not called me back from the endo about the reclast infusion. Oh well.

Hope everyone is doing well.

 

[luvmarypoppins]

And if you are all bored you can read my synthroid story of the day, or why I dont like cvs, but I already did a thread on that the other week.

I send dh in after church to pick up the med. I tell him 1. I dont kow what it was. So he comes out with 2 meds for me and 1 for ds. I look at mine and see its for...synthroid 200!!!

Why oh why. I send dh back in. He talks to the tech. Its the tech who cancelled my other dose when I got the 175. She tells him she doesnt know why it was refilled on the rapid refill. They take it back and credit our credit card. Cant these people look at the scripts right??? Sigh, sigh. Yes, you must all be your own advocates.

Oh and an older lady from my church is going to my ent surgeon tomm. She is having some major cancer surgery on her face. I told her to tell the dr. I said hi and that she goes to my church etc. I feel so bad for her. It sounds like she has a long road ahead. She is all by herself too. She already had alot of external beam radiation but not with my rad. onc.

 

[mrsklamc]

No, I'm starting the diet Weds. That way hopefully the thyrogen comes in the 16th and can start doses on the 22nd and take the tracer the 24th.

 

[dischick4778]

No, I'm starting the diet Weds. That way hopefully the thyrogen comes in the 16th and can start doses on the 22nd and take the tracer the 24th.

Good luck and stay strong. If you are looking for something sweet the chocolate cake in the LID recipe book was a decent substitute. And the avocado pasta was good too.

 

[mrsklamc]

Ok I just talked to the specialy pharmacy and the thyrogen is supposed to be delivered tomorrow via fedex.

Making oatmeal with raspberries and cinnamon for breakfast, a salad for lunch, and a plain hamburger with unsalted ketchup for dinner. Carrot sticks for snacks.

 

[jcano]

Just joining. Three females in the house...all on different doses of Levothyroxine. My DH is thrilled!

I've been hypo for...well, let's just saw more years than I want to acknowledge. My dd's both have Hashi's along with some other auto-immune issues.

 

[mrsklamc]

Just joining. Three females in the house...all on different doses of Levothyroxine. My DH is thrilled!

I've been hypo for...well, let's just saw more years than I want to acknowledge. My dd's both have Hashi's along with some other auto-immune issues.

Welcome!

 

[mrsklamc]

This diet is such a bizarre thing. Do you know what I want this afternoon? A fruit roll up. I can't tell you the last time I have even THOUGHT about a fruit roll up!

Has anyone made any of the brownie recipes in the thyca cookbook?

 

[dischick4778]

mrsklamc - Isn't it amazing how all of sudden you want things you normally don't even think about at the time when you can't have them! It's very annoying. I did not try the brownies, but did try the chocolate cake and it wasn't bad.

Question for the group - I have been on the new lower dose for about a month now and at first I saw no change. However, the past three days I have been totally exhausted. I wake up tired, I'm tired all day, and I literally fall asleep by 8pm. This happened over night and I am wondering if you think it has to do with the dose change. I went from 224 to 200. I am just trying to see if this is normal. Has anyone else experienced this with a dose change? Thanks!

 

[mrsklamc]

mrsklamc - Isn't it amazing how all of sudden you want things you normally don't even think about at the time when you can't have them! It's very annoying. I did not try the brownies, but did try the chocolate cake and it wasn't bad.

Question for the group - I have been on the new lower dose for about a month now and at first I saw no change. However, the past three days I have been totally exhausted. I wake up tired, I'm tired all day, and I literally fall asleep by 8pm. This happened over night and I am wondering if you think it has to do with the dose change. I went from 224 to 200. I am just trying to see if this is normal. Has anyone else experienced this with a dose change? Thanks!

Totally sounds like it could be a dosage change thing.

This may be unique to me, kinda weird, but the other thing that knocks me out like that with no real other obvious symptoms is, well....treatable with monistat.

 

[dischick4778]

At this moment I don't have any symptoms other than being really tired. I guess I will wait and see. It's probably just an adjustment to the meds. It's always something right?