The THYROID Thread

[angwill]

I ask for copies of all labs, too. I give them to all my doctors. Lol I was very Low on vit D a few years back and was put on the mega dose. I was told to continue with over the counters, so I take 5000 mg a day, pays whate ER isn't my one-a day. So far it has been good.

Just booked my neck ultrasound. Don't really see the point - 21 years now, but this new endocrinologist likes to have them every 2 years. This is my second with her. Also booked my mammo & ultrasound - September will be "fun". Lol

Off to Aulani in a week! Going to start packing today!!!!! "SingingMom" ....Sent from my iPad using DISBoards

Right now I stay within my health system so all my doctors have computer access to all my results but if I notice they still use the folders with notes I give them copies knowing they must not be computer savy.

Good luck with all the tests. At least you get to get away and forget about it all before you go. lol

 

[SingingMom]

The vitamin D I buy are little round liquid pills from Sam's club or Walgreens when they are bogo. I keep reading how Hashimoto's patients are prone to having Celiac Disease because once you have an autoimmune disease like Hashi your likely to get others like Celiac. That said I have had intestinal issue for about 2 years now and had the doctor test me for Celiac last month and I don't have it. I have been eating activa and taking a probiotic and it has helped quit a bit. I haven't had stomach cramping since being in hypohell after surgery thank God because it was awful where I couldn't move. I don't know which was worse that or the shoulder joint pain that felt like a knife was cutting into it. My iron levels were tested and were good. The itching on my legs comes with little blisters that are actually under the skin not raised. The itching elsewhere comes with a slightly raised rash. Behind my ears I get little fluid filled bumps that pop and scab. I didn't have any of these before thyroid surgery. I am always using lotion or coconut oil especially on my legs and shins. My legs have always been extremely dry since my thyroid issues started 20 years ago but never itchy till surgery. My T3 levels have been between 2.6 and 2.9 over the last year and a half so low end of normal. My TSH and T4 have both been on the hypo side of the scale however. T4 is 1.75-2.29 so higher than norm and TSH 0.06 to 0.12 so low end of norm. We will see if lowering the levothyroxine and adding cytomel will bring the TSH up just a bit and bring up the T3 levels to a higher norm. I love the health system website to get all my test results without pulling out the paperwork. lol

Interesting about the auto immune problems. I had pseudo tumor of the orbit and was told it could return with stress because I had it already. Guess I should keep alert for other auto immune trouble.

Maybe I'll just go to Hawaii and drink rum.... Lol

 

[luvmarypoppins]

singing mom - I hope you have a great trip to Aulani. Sounds heavenly. cant wait to hear all about it.

Ang - sorry you have so many issues to deal with. That is alot on your plate for sure.

Christine - the med I was speaking about is protonix.

Well I know my endo would tell me if I asked her about the vit d number. They do have an onsite website, but I decided against signing up for it since it seems its not truly in house so to speak. Its through another third part and I just dont feel like having anymore people know my med info then those that already do etc.

Well ds3 and I have tentatively booked a trip to WDW for Aug. 29 to Sept. 4th. He got the nurses rate at the Dolphin, except for the last night, they were sold out at both the Dolphin and the Swan, we called. So smart mom me came up with the Plan B, using dh ff miles to book one night at the Swan, yup still couldnt even get the dolphin with the ff miles, so we will have to change hotels for one night, no prob. Its practically across the walkway etc. Now for the food adrs and I am cashing my southwest ff miles in for one free way so that is good too. He is just hoping he doesnt get called in for an interview or things will be changing rapidly etc.

He did go for one interview for a group home but the hours and shifts were terrible as well as a long commute, so he said thanks but no thanks for now etc. He is waiting for a hosp. to contact him and his 2 friends work there so hopefully they will help him get in etc. If he does it will be a miracle from God for sure.

 

[angwill]

singing mom - I hope you have a great trip to Aulani. Sounds heavenly. cant wait to hear all about it.

Ang - sorry you have so many issues to deal with. That is alot on your plate for sure.

Christine - the med I was speaking about is protonix.

Well I know my endo would tell me if I asked her about the vit d number. They do have an onsite website, but I decided against signing up for it since it seems its not truly in house so to speak. Its through another third part and I just dont feel like having anymore people know my med info then those that already do etc.

Well ds3 and I have tentatively booked a trip to WDW for Aug. 29 to Sept. 4th. He got the nurses rate at the Dolphin, except for the last night, they were sold out at both the Dolphin and the Swan, we called. So smart mom me came up with the Plan B, using dh ff miles to book one night at the Swan, yup still couldnt even get the dolphin with the ff miles, so we will have to change hotels for one night, no prob. Its practically across the walkway etc. Now for the food adrs and I am cashing my southwest ff miles in for one free way so that is good too. He is just hoping he doesnt get called in for an interview or things will be changing rapidly etc.

He did go for one interview for a group home but the hours and shifts were terrible as well as a long commute, so he said thanks but no thanks for now etc. He is waiting for a hosp. to contact him and his 2 friends work there so hopefully they will help him get in etc. If he does it will be a miracle from God for sure.

LMP,
To be honest I have never been one to sweat medical issues. As long as I am not in bad pain that Aleve can't help I just deal with it. I try not to talk about medical issues in my everyday life for fear I will make things worse. lol I love these boards though because nobody understands like someone experiencing it themselves. You get better advice here than the doctors office too.

Your trip even with moving rooms sounds like a fun time. I hope your DS gets a call the last day there for an interview after your back home and I hope it's his dream job.

 

[SingingMom]

LMP - we always stay at the Dolphin, except this past time with DD because it was just the two of us & I wanted to use Magical a Express. The pool area and the restaurants are great at the Dolphin & Swan and I afore the "heavenly beds"! Great location with the Friendship Boats to Epcot and Studios, we will be staynt there again in January.

I am all packed for Hawaii. Now I have to oversee DH and DD's packing! ;-)

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

 

[macraven]

LMP - we always stay at the Dolphin, except this past time with DD because it was just the two of us & I wanted to use Magical a Express. The pool area and the restaurants are great at the Dolphin & Swan and I afore the "heavenly beds"! Great location with the Friendship Boats to Epcot and Studios, we will be staynt there again in January.

I am all packed for Hawaii. Now I have to oversee DH and DD's packing! ;-)

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

my brother owned a company in hawaii for many years until he closed it up this March. he wanted to retire.
he was a contractor on the aulani resort.
he didn't have any issues with disney on the contract but said other contractors had a long wait for disney to pay them.

i did see the resort going up on one trip while in hawaii visiting brother.

and saw it again after it was finished.
it looks lovely!

he recently left hawaii after living there for 25 years and recently moved to central florida.

have a great time on your vacation!


LMP, that stinks you have to change hotels for one night.
crossing my fingers something opens up for you soon so you don't have to switch hotels.

 

[branv]

Wow. Fascinating in a bad way. When my body finally went ballistic on the thyroid problems this year, I got what looked like part eczema and part gives on my forearms. My eyelids and area around the eyes got scaley and flakey (yum!). My eyes watered all the time for a while. When I finally saw an endo, she didn't just up my dosage, when she saw the skin issues, she took me off generic levothyroxine, and put me on the name brand synthroid. She said sometimes people react to the ingredients in levo/generics. It has steadily improved, but not sure if that is a result of the diff med or dose.

 

[Christine]

My T3 levels have been between 2.6 and 2.9 over the last year and a half so low end of normal. My TSH and T4 have both been on the hypo side of the scale however. T4 is 1.75-2.29 so higher than norm and TSH 0.06 to 0.12 so low end of norm. We will see if lowering the levothyroxine and adding cytomel will bring the TSH up just a bit and bring up the T3 levels to a higher norm. I love the health system website to get all my test results without pulling out the paperwork. lol

Very interesting, again. My T3 was 2.6 this time and my endo thinks it's fine. My T4 was at 1.42, which was quite a bit lower than what it was before. Yet my TSH remained at around 0.3. I know there are issues if your T4 is very high yet for T3 sits at a lower range.

 

[angwill]

Wow. Fascinating in a bad way. When my body finally went ballistic on the thyroid problems this year, I got what looked like part eczema and part gives on my forearms. My eyelids and area around the eyes got scaley and flakey (yum!). My eyes watered all the time for a while. When I finally saw an endo, she didn't just up my dosage, when she saw the skin issues, she took me off generic levothyroxine, and put me on the name brand synthroid. She said sometimes people react to the ingredients in levo/generics. It has steadily improved, but not sure if that is a result of the diff med or dose.

I wish all mine was is the fillers in the meds but I had been on Levo with a switch here and there to Synthroid and back over 20 years without these issues. Mine were at their worse when being supressed and not taking meds for RAI treatment after thyroid cancer.

I have read that some with filler issues have the same issues on Synthroid and need to go on natural thyroid. I hope the Synthroid switch works for you. When I have switched over the years both the Levo and Synthroid worked the same for me so I ended up asking for generic Levo that was quit a bit less expensive years ago. Even now I get Levo for $10 for three months at Walmart.

 

[angwill]

Very interesting, again. My T3 was 2.6 this time and my endo thinks it's fine. My T4 was at 1.42, which was quite a bit lower than what it was before. Yet my TSH remained at around 0.3. I know there are issues if your T4 is very high yet for T3 sits at a lower range.

2.6 for T3 is in the normal range but at the lower end of normal. The doctor said my med change was because my T4 was higher than normal and since my TSH is lower and closer to hypo we needed to get those in line so he lowered my Levo dose and added the cytomel to help and that should increase the T3 while hopefully bringing the TSH and T4 back into range. We need the TSH level as low in he normal range as possible though due to the thyroid cancer.

 

[Christine]

2.6 for T3 is in the normal range but at the lower end of normal. The doctor said my med change was because my T4 was higher than normal and since my TSH is lower and closer to hypo we needed to get those in line so he lowered my Levo dose and added the cytomel to help and that should increase the T3 while hopefully bringing the TSH and T4 back into range. We need the TSH level as low in he normal range as possible though due to the thyroid cancer.

Thanks. I actually checked by T4 again today and it is lower than I thought (1.24)--guess I read it wrong the first time. I did read that the T4 and T3 should be so "opposed" so I guess if you have a very high T4, you don't want a lower T3. Mine are both now on the lower end of normal so I guess it's okay.

Interesting development: I probably did not mention that I have been seeing a psychiatrist for some anxiety issues that resulted from the post-shooting/change in thyroid meds debacle that happened last year. I see him every 3 months or so. I went back today and gave him my Vitamin D results. He immediately wrote me a prescription for the 50,000 IUs to take for 12 weeks. He kind of shook his head when I told him my endo just told me to take OTC supplements. He said I probably would never get my levels up that way. So, I've got to take the higher dose now. I have to say, I'm kind of scared. It sounds like a LOT.

 

[angwill]

Thanks. I actually checked by T4 again today and it is lower than I thought (1.24)--guess I read it wrong the first time. I did read that the T4 and T3 should be so "opposed" so I guess if you have a very high T4, you don't want a lower T3. Mine are both now on the lower end of normal so I guess it's okay.

Interesting development: I probably did not mention that I have been seeing a psychiatrist for some anxiety issues that resulted from the post-shooting/change in thyroid meds debacle that happened last year. I see him every 3 months or so. I went back today and gave him my Vitamin D results. He immediately wrote me a prescription for the 50,000 IUs to take for 12 weeks. He kind of shook his head when I told him my endo just told me to take OTC supplements. He said I probably would never get my levels up that way. So, I've got to take the higher dose now. I have to say, I'm kind of scared. It sounds like a LOT.

Here is an article on WebMD about too much Vitamin D supplements. It isn't going to make you feel much better but it will give you an idea of what the side effects are and what blood tests to ask for to keep an eye on your levels. http://www.webmd.com/osteoporosis/features/the-truth-about-vitamin-d-can-you-get-too-much-vitamin-d

That shooting you went through would trouble my mind as well. I do hope your anxiety subsides as time goes on.

 

[angwill]

Interesting about the auto immune problems. I had pseudo tumor of the orbit and was told it could return with stress because I had it already. Guess I should keep alert for other auto immune trouble.

Maybe I'll just go to Hawaii and drink rum.... Lol

I will go with you to Hawaii and bring a jar of dirt along with the rum. lol

 

[macraven]

Thanks.
Interesting development: I probably did not mention that I have been seeing a psychiatrist for some anxiety issues that resulted from the post-shooting/change in thyroid meds debacle that happened last year. I see him every 3 months or so. I went back today and gave him my Vitamin D results. He immediately wrote me a prescription for the 50,000 IUs to take for 12 weeks. He kind of shook his head when I told him my endo just told me to take OTC supplements. He said I probably would never get my levels up that way. So, I've got to take the higher dose now. I have to say, I'm kind of scared. It sounds like a LOT.

if you are taking the ergo once a week, then 50,000 iu is the normal dose.

i was concerned also the first 2 weeks i took the vit d.
but, no side effects or issues happened to me.

you should have an increase in that 3 month period.
i hope your levels improve soon!

 

[luvmarypoppins]

ang - interesting article. Maybe I should ask my endo next time I speak to her about this.

Christine - I have been taking the 50,000 once a week since 2009 and the endo has never said anything except your levels are good. I do know at first I had practically no vitamin d in my body they said if I remember correctly. I think that was a result of my bone marrow shutting down before the cancer dx.

I am sure its hard to deal with all you have been through and the post traumatic stress, but I am glad you have someone to talk to and will help you.
I hope you will be able to heal over time. I am sure it is a process. I cant imagine what you have gone through. Wishing you all the best always.

 

[luvmarypoppins]

Well the trip plans are finalized. Ds and I are staying at the Dolphin from 8/29 till 9/1 and then the 2nd we are staying at the Yacht Club for one night.

I was planning to switch to the Swan but when I went to book it the rooms were sold out. It must be some really big conference because both places are sold out and I cant even get a room there with dh ff miles.

So I got a good deal with dh ff miles at the Yacht Club for a standard room. Hello Stormalong Bay again.

Also the first MNSSHP is Sept. 1st so ds said he would like to go.

Now to make some dining adrs. I want to see the new Frozen events at the studios.

I hope this works out and that ds doesnt have to go on an interview etc. We shall see.

 

[SingingMom]

Well the trip plans are finalized. Ds and I are staying at the Dolphin from 8/29 till 9/1 and then the 2nd we are staying at the Yacht Club for one night. I was planning to switch to the Swan but when I went to book it the rooms were sold out. It must be some really big conference because both places are sold out and I cant even get a room there with dh ff miles. So I got a good deal with dh ff miles at the Yacht Club for a standard room. Hello Stormalong Bay again. Also the first MNSSHP is Sept. 1st so ds said he would like to go. Now to make some dining adrs. I want to see the new Frozen events at the studios. I hope this works out and that ds doesnt have to go on an interview etc. We shall see.

Enjoy!! We always stay at the Dolphin - love to sit in the lobby with a drink and people watch after a long park day!
The Cabana Bar area is so relaxing! I hope it's warm enough when I go back in January!

The Frozen fireworks and sing-a-long are the best!!! We did the Premium package, so we had the dessert party included. DD & I loved it!

We leave for Aulani Monday! Helping DH with his packing now. He really needs a vacation. I hope I can sleep on the plane. Long flight!!!

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

 

[luvmarypoppins]

singing mom - I hope you are having a great trip.

I have been working on my trip planning. I just booked the wheelchair and towncar. I only made 2 adrs so far. BOG dinner for the night of MNSSHP and then beaches and cream for dinner before we leave. I hope that works out. I am going to try and get in there sooner and order as soon as we sit down etc.

Hope we get to see the Frozen fireworks and sing along.

I have been having alot of digestive issues again, so I guess I should make an appt. with the gastro. I would rather have dh there with me because I just know they will want to do an endoscopy and I am hoping not the other end but I am sure they will do 2 at once.

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

 

[Christine]

Not much going on here. Just working on getting DS back to school. He went down mid week to volunteer to help move the freshman into the dorms. He came back home but will leave on a more permanent basis on Sunday. The school is only 2 hours a way, so not a huge deal to go back and forth.

Last week, I took my first 50,000 IU Vitamin D pill. I did okay at first, but I woke up with lower back pain which progressed to my knees and then my entire legs for all of that day and the next. Then it just went away. Sure, I get aches and pains now and then but not like that without a reason for it. So, I'm convinced it was the high dose Vitamin D; however, from what I read, side effects are very rare and the side effects I experienced were more likely from a magnesium deficit caused by the Vitamin D using it all up. All I know is that I'm not taking it this weekend because I don't want to be aching through most of it. I'll just take the lower dose stuff and give the high dose tablet a try when I have nothing going on.

 

[luvmarypoppins]

This thread has been quiet.

Christine - how are your vitamin D issues?

singingmom - how was the Aulani trip?

Well I am back from the trip with ds. We did so much in the time we were there. I called ds the energizer bunny. He pushed me around alot. I told him there was no way I could do all he wanted to do in the heat without him pushing me. He refused to go back to the room for a break so it was go, go , go.

We liked the Dolphin, except when they didnt make our room up the last night. I did think it was too much walking compared to the Swan. We got upgraded from a standard room to a resort room view which was nice and also we were close to the elevators which was what I asked for.

It was hot, really hot. We liked the MNSSHP, but probably wouldnt do it again. We really arent Halloween people. I decorate just fall type stuff.

We loved the frozen fireworks, and sing along.

We ate but with the heat you didnt feel like eating alot. I got kids meals several times. At Coral Reef we got a tank table which ds was thrilled with. Hate to say this, but I am getting weary of Be Our Guest dinner. Think I will skip it the next time. The biggest disappointment was Beaches and Cream. I think that place has gone downhill from our last visit. Ds and I also learned not to do 2 buffets in one day. We did Tusker House for lunch and then Hollywood and Vine for dinner. Way too much food in one day. I felt sick. I will probably do a little dining report on the other board.

We also went to see La Nouba. Ds has been dying to see this anywhere for years and he was beyond thrilled. Even though our seats were at the highest place in the theater we had a good view of everything right in the middle.

Our room at the Yacht Club was also fantastic. I booked the cheapest room with dh ff miles - standard view and when we got there they said we were upgraded to Water View. Our view was straight across Crescent Lake looking at the ESPN Club. Awesome! We did get to swim in storm a long bay twice but wish it was longer. Also out of the three pools there they closed my favorite one for maintenance right when we were there.

The Downtown Disney area is a mess! Glad we took a taxi to the show, but we walked the whole place back to the bus stop. Or I should say ds did.

The fall decorations were really nice at MK.

Well its back to reality. I will call to schedule the bone scan next week. My knees were really bothering me on the trip.

If you have any spare prayers, please say one for ds3 tomm. He got a call on our trip from my friend and her friend works at a hosp. that he put his resume into a hospital that is about an hour away, but its for a very prestigious nursing fellowship in pediatric oncology/hematology and she heard that tomm. they will be talking about his resume. At least talking is a good thing, so I am going to pray for him if that is a door that God wants open for him.

Check in when you can.