The THYROID Thread

[SingingMom]

Well I am back from the endo

She said all the tests were good. Right now she said she is not too concerned about the tsh number increase. She said that she will recheck the tsh in 6 months as usual, but she said if the number goes up then she might have me take 1/2 of 1 pill once a week???? Has anyone done this? How would this even work out. I only get a 30 day supply at once from my ins. I guess she would have to write it for extra pills? She mentioned upping the dose to 175 and I said no, I did not feel good then (too many heart palpations and going crazy etc). So she has a plan if need be.

.

I take 112 mg daily, and an extra 1/2 a pill on Sunday. Lol. It gets very crazy to try and explain it when another doctor asks what meds I take and what dosage. Lol

My insurance dispenses 90 day supply, it works out ok for me.

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

I am prescribed .137 but it is too much for me if I take it all week. The .125 is not enough for me if I take it all week. So I take .137 for 5 days, I take 1/2 of one on Saturday, and nothing on Sunday.

 

[angwill]

Well I am back from the endo

She said all the tests were good. Right now she said she is not too concerned about the tsh number increase. She said that she will recheck the tsh in 6 months as usual, but she said if the number goes up then she might have me take 1/2 of 1 pill once a week???? Has anyone done this? How would this even work out. I only get a 30 day supply at once from my ins. I guess she would have to write it for extra pills? She mentioned upping the dose to 175 and I said no, I did not feel good then (too many heart palpations and going crazy etc). So she has a plan if need be.

Big issues with weight, heart and shortness of breath. Figures. I am the only person still alive in my family, so why am I not surprised considering my parents and my sister died of heart related things.

In about 6 weeks from the rad. onc visit to her visit today I gained like another 8 or 10 lbs. I think. Very unsettling. They are thinking its fluid that I am retaining. I guess my heart is not pumping right etc? She didnt mention it but I am sure she is thinking it.

Well my medical student today made dh and I laugh. Of course not in front of her. She asked about our last name. Yeah, its a weird one. Everyone always asks about its cultural origin. Dh always just wants to say American. Anyway what made us giggle afterwards was how she was dressed. She had on a pretty short skirt. Lets just say glad she had the white coat over it, but the funniest was she had on these big white high heels and she kept clunking down the hallway. One time it looked like she was gonna fall out of them. We both said to each other she was inappropriately dressed but she was really sweet.

So the endo is getting me a good internist and then I am sure I will be seeing a cardiologist after that too. Oh what fun!! More invasive tests.

Well I think we are going to disney sept. 27 to oct. 3rd so we will work around it. I am trying to work something out with my cousin who will be there then. Hopefully I can see him for a day or two.

Micayla - thinking of you Prayers for you and wishing you all the best as always.

Check in when you can everyone.

I am glad things came back good from the Endo and hope they get those symptoms figured out. You could be retaining water and that will effect the way your heart feels and maybe a diuretic from the cardio will help with the heart and the water weight. I do hope you figure it out.

I know what you mean by the weight I have always had issues despite working out and eating right. I was hoping once they found the cancer and took care of that it would help but nope not from what I am reading from other thyca survivors. Blech!!!

 

[mrsklamc]

Just got back from a lovely 4 day trip to Michigan to celebrate my in-laws 40th anniversary. Pretty state!

I have heard of people taking different doseages on different days but I have not done it myself.

 

[luvmarypoppins]

ang - how are you feeling? I am sure its not easy going hypo. When will they do a blood test?

Micayla - so glad that you were able to get away. Good to relax and refresh with all you are going through.

Anyone see my little thread on the cb about my dentist? Just gt a letter he is closing up. No one to take over the office. So I called today and my ds is going to get all our family records. And I am getting some money back from the cap I never got finished etc. Good. Now back to the dental drawing board.

ang - dont be surprised if you develop dental issues post rai. It does a number on your teeth too.

And I also have the wonderful tear duct damage post rai too.

Christine - I am sure you are busy with all the college stuff. My youngest ds is an orientation leader so he has been at the college all week. He only commutes but they have to practice tours, speeches etc. He said I only know about nursing, how am I gonna explain engineering, theater etc?

Well I am back to my trip planning. Good distraction from all my medical stuff.

Hope everyone is doing well

 

[Christine]

Yep, I am in FULL college mode. This past Monday, I moved my DD back to WVU (she's a senior). I hired some movers to help with getting the stuff out of the storage unit, into the truck, and into her house. They didn't show up.

Fortunately, I brought my friend with me who can work like a man!! She is going through a breast cancer scare now and so I think all the hard work took her mind off of it. We got my DD moved but it was EXHAUSTING.

My son goes on Wednesday. Should be much easier with all the volunteers. Then he has 4 days of orientation. My son said he'd like to be one of the orientation volunteers so maybe he will be doing the same as your son next year.

After that, I think all the quiet is going to unnerve me!

 

[3prettyprincesses]

3prettyprincesses: if you read above, you will see that a few of us have run into this.

My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid. I have an allergy to the povidone filler in Synthroid and I told her I could not use it. She volunteered to call my doctor to find a suitable replacement. She worked with me right there to find one. For me it is Tirosint. It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production.

The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell. They pulled it all and, why it takes a year to get more out there is unknown to me.

I do agree that they could have notified Levoyxl customers in some way. It's not as if they don't have all of our information.

May I ask what type of reaction you had? I seem to be tolerating the Synthroid but am having the worst itchy skin! It's the creases of my knees and elbows that itch. Does that sound like a side effect anyone here has had?

 

[SingingMom]

Yep, I am in FULL college mode. This past Monday, I moved my DD back to WVU (she's a senior). I hired some movers to help with getting the stuff out of the storage unit, into the truck, and into her house. They didn't show up.

Fortunately, I brought my friend with me who can work like a man!! She is going through a breast cancer scare now and so I think all the hard work took her mind off of it. We got my DD moved but it was EXHAUSTING.

My son goes on Wednesday. Should be much easier with all the volunteers. Then he has 4 days of orientation. My son said he'd like to be one of the orientation volunteers so maybe he will be doing the same as your son next year.

After that, I think all the quiet is going to unnerve me!

Our baby is starting junior year of college and heading to London next week to study for the whole semester!! I don't know WHAT I am going to do with myself!!
This getting old stuff is for the birds!!

"SingingMom" ....Sent from my iPad using DISBoards

 

[luvmarypoppins]

May I ask what type of reaction you had? I seem to be tolerating the Synthroid but am having the worst itchy skin! It's the creases of my knees and elbows that itch. Does that sound like a side effect anyone here has had?

Well I had really itchy skin. First I had a sharp stabbing pain and then that was followed by the really itching skin.

Of course my pcp misdiagnosed me. Those symptoms were the sign of a severe B12 deficiency.

I am not saying that is what is wrong with you, but have you had blood tests to check those levels?

 

[luvmarypoppins]

Christine - can you believe my ds actually gets paid to be an orientation leader. It probably works out to min. wage with all he has done, but he also got a 2 day retreat out of it too. He said his room mates were horrible though. Really party people and he is not alike that at all.

singing mom - that is so exciting for you dd. Wow! Great experience! Off topic - do you know or have you ever checked into the Swan early around 11 am. if the room would be ready? We are going right to the parks anyway if the room is ready or not.

micayla - thoughts and prayers for you as always. Hope you have a good week end.

 

[SingingMom]

singing mom - that is so exciting for you dd. Wow! Great experience! Off topic - do you know or have you ever checked into the Swan early around 11 am. if the room would be ready? We are going right to the parks anyway if the room is ready or not.

.

We always stay at the Dolphin. There have been a few times the room HAS been ready that early! The other times, we leave our bags with the bell captain and go off to the play lol. Or we have a snack at the Cabana Bar and they call us when the room is ready.

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

May I ask what type of reaction you had? I seem to be tolerating the Synthroid but am having the worst itchy skin! It's the creases of my knees and elbows that itch. Does that sound like a side effect anyone here has had?

Well, it was odd. I took Synthroid all the time and never had any noticeable reaction, but when took my usual dosage of ibuprofen, I would get a single large wheal eithe on my chest or back. It would start about 30 minutes after swalling the tablets and last for 2 hours. After this happened several times, I assumed I was allergic to ibuprofen. So I switched to Tylenol. Same thing happened. I still figured I was just now allergic to everything. When I didn't take those medications, I was fine. Then one day my doctor told me to get some OTC Feosol for my iron deficiency. I took that and got a HUGE wheal/hive on my chest. The biggest ever. I then realized: No, I cannot be allergic to all these things. So I took every medication I had and set up a spreadsheet and listed all the ingredients. I found the common ingredient was povidone. However, what threw me was that my Synthroid had it as well as a brand of sudafed. I went to my doctor with all this and he determined that I was probably allergic to the povidone in certain amounts. The Feosol probably had a LOT of it and the Synthroid probably doesn't have much.

So he then switched me to Levoxyl. What I did noticed was that the skin on my chest and neck kind of cleared up. It was always "flushed" looking to the point people would comment on it and that went away. So I guess the daily Synthroid did cause some issues but not enough to cause a hive.

I now take liquid ibuprofen if I need it because I cannot find one without povidone and I take regular strength Tylenol because it is made without povidone. It's a real pain in the neck. But, overall I did not have any itching unless I got the hive and that thing itched like crazy.

 

[luvmarypoppins]

ang - how are you feeling?

Micayla - I am always praying for you. How are things?

Christine - I need to get back to reading

Well I havent heard from the internist yet. I might give it a week or two and leave a call at the endo nurse etc.

Completely OT - What is the best diversion from thy ca? Why a disney trip of course!
Yup we are gong to our first food and wine. 2 of the ds are coming with us for the week end. We will be at the Swan and I know the concert that week end is Starship. They were playing by us over the summer but I didnt see them. That week end we are staying at the Swan. It will be our first food and wine. Not so uch the wine but the food. Just snacking around the world looks fun. I dont want to do any of the special stuff, we are alraedy paying an arm and leg for the ds airfare. At leat the hotels are free with dh ff miles.

Also that week end my cousin and his family will be there on friday and then just sat. he will be there. The rest are flying back to NJ on sat. I have never met my cousins grandkids or his son in law so that will be great if it works out. I have a strange family, not very close sadly.Then for 3 says dh and I are going to the Beach Club. It better be nice weather becaued I def. want to swim in Storm Along Bay.

Oh and the best part of the trip. The day we come home, dh is leaving for calif that afternoon, so we have to unpack and repack a suitcase for him. oh fun!

Check in when you can.

 

[mrsklamc]

Thanks for checking in....Just got back from the OB actually. No sign of the cystic hygroma so that's good. Just praying the 'screening' is wrong....which they would say it's not wrong, because they gave us a 99% likelihood of him having DS and we were just in the 1%, but anyway...

Also, they did my glucose tolerance test early and it was not nearly as bad as people told me it would be.

 

[Christine]

Thanks for checking in....Just got back from the OB actually. No sign of the cystic hygroma so that's good. Just praying the 'screening' is wrong....which they would say it's not wrong, because they gave us a 99% likelihood of him having DS and we were just in the 1%, but anyway...

Also, they did my glucose tolerance test early and it was not nearly as bad as people told me it would be.

mrsklamc, will there be more tests regarding the DS? I know when my test came back odd, I had further tests done to get a definitive answer.

 

[mrsklamc]

mrsklamc, will there be more tests regarding the DS? I know when my test came back odd, I had further tests done to get a definitive answer.

We will probably have an amnio, but further down the line when the risk is early labor rather than miscarriage. That would be considered diagnostic rather than a 'highly accurate screening.' In the meantime there will be a 'level 2' ultrasound and fetal EKG to check for problems.

 

[angwill]

ang - how are you feeling?

Micayla - I am always praying for you. How are things?

Christine - I need to get back to reading

Well I havent heard from the internist yet. I might give it a week or two and leave a call at the endo nurse etc.

Completely OT - What is the best diversion from thy ca? Why a disney trip of course!
Yup we are gong to our first food and wine. 2 of the ds are coming with us for the week end. We will be at the Swan and I know the concert that week end is Starship. They were playing by us over the summer but I didnt see them. That week end we are staying at the Swan. It will be our first food and wine. Not so uch the wine but the food. Just snacking around the world looks fun. I dont want to do any of the special stuff, we are alraedy paying an arm and leg for the ds airfare. At leat the hotels are free with dh ff miles.

Also that week end my cousin and his family will be there on friday and then just sat. he will be there. The rest are flying back to NJ on sat. I have never met my cousins grandkids or his son in law so that will be great if it works out. I have a strange family, not very close sadly.Then for 3 says dh and I are going to the Beach Club. It better be nice weather becaued I def. want to swim in Storm Along Bay.

Oh and the best part of the trip. The day we come home, dh is leaving for calif that afternoon, so we have to unpack and repack a suitcase for him. oh fun!

Check in when you can.

Sorry, I have been MIA. To sum up how I am feeling 3 1/2 weeks without my thyroid meds it that I have been to the pits of hell and become a new breed of thyroid walking dead. I can not stand it much longer but good news I got my whole body scan and the nuc med guy said he never saw so little tissue left after a surgery so I must have a great surgeon especially since I also found out I had severe Hashimoto's that nobody bothered to test me for over the last 20 years I had hypothyroidism. Tuesday I get my RAI therapy dose and am isolated and on Friday I am free and start taking a high dose of levothyroxine. Hopefully that will pop me back up to the energetic and brain awake person I was. Oh and I did find out my cancer mass was bigger than the right thyroid but nobody felt it. It was encapsulated and tall cell variant so it was an agressive cancer that looks like it did not spread. Yeah!!!

So over the last few weeks my son totalled his 13 day old first car and was lucky to live through it. I have been driving him around as the driving dead. Then DH started a new job and the first day driving in he blew out a tire and the second day blew out the transmission. Being brain dead I don't even have the energy to care. I will when I am thinking again and the bills start pouring in.

I see a lot of people have kids going off to college. My son starts his first year at our community college on Monday. Yeah Oh and he found a replacement car yesterday, thank God. I can not drive him while in isolation.

I hope your tests come back good.

 

[angwill]

We will probably have an amnio, but further down the line when the risk is early labor rather than miscarriage. That would be considered diagnostic rather than a 'highly accurate screening.' In the meantime there will be a 'level 2' ultrasound and fetal EKG to check for problems.

I am still praying and hoping things turn well for you. Just hang in there and I know that is easier said than done.

I did think of you when I read an article about how hypothyroid patients have a much higher chance of having a baby with Autism. I know that is not what your dealing with but it was interesting to read about it. It was on the thyca.org website.

 

[luvmarypoppins]

ang - sorry you are dealing with all these other problems on top of the hypo hell.
There is light at the end of the tunnel, so hang in there! Also soon enough you will be able to eat normal food.

Just keep drinking to flush the rai out of you. Lots of water!! I thought I was gonna float away!

Did they tell you what rai dosage you are going to get? I thought I read all aggressive variants need the 200 mci rai dose??

Well Jenn who used to post on here alot has tall cell variant. She got 200 and had the tear duct damage like me too.

At least yours was encapsulated so that is good.

Wishing you all the best. Hang in there! My thoughts and prayers are with you.

 

[angwill]

ang - sorry you are dealing with all these other problems on top of the hypo hell.
There is light at the end of the tunnel, so hang in there! Also soon enough you will be able to eat normal food.

Just keep drinking to flush the rai out of you. Lots of water!! I thought I was gonna float away!

Did they tell you what rai dosage you are going to get? I thought I read all aggressive variants need the 200 mci rai dose??

Well Jenn who used to post on here alot has tall cell variant. She got 200 and had the tear duct damage like me too.

At least yours was encapsulated so that is good.

Wishing you all the best. Hang in there! My thoughts and prayers are with you.

Thanks, I got out of the LID diet because the doctors here do not believe it makes any difference at all. They feel that the thyroid can only take in so much iodine and by going really hypo without meds it will be ripe to fill up and doing the diet is not going to help it fill up any fuller than it can. I am so very thankful for that with all the stress and extra responsibilities on me it would have been near impossible for me to follow.

I will get 100 mci because the cancer was encapsulated with no spread and the lack of left over thyroid tissue. They said I had the least amount of tissue they ever saw after surgery. Because of the tall cell variant they said that will mean it will be followed up more often every 6 months for several years. They explained that it spreads more like a breast cancer vs a slow growing thyroid cancer.

I am praying I don't have any damage to tear or salavary glands. I am just so thankful I did not go through the hard times with surgery and all that so many others such as yourself went through.

Thanks for the prayers. Ang