The THYROID Thread

[SingingMom]

Sorry to hear you haven't been feeling well & your son is having such problems. So hard to watch your child have health problems.

DD20 has been complaining of knee pain, so took her to internist yesterday. She is an equestrian and works out three times a week. She did a lot of stairs last semester in London. Doctor diagnosed her with patellofemoral pain syndrome and prescribed an anti-inflammatory and 8 weeks of PT. No workouts or riding for two weeks, but she can show next week. Never a dull moment!

Deciding on which ABD to take this summer. If summer ever comes.....

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

 

[angwill]

Hello,

LMP, I did find a way to get the Thyrogen but could not get the hospital to allow me to get it for the real price and not their inflated $10,000. It makes me sick the makup on such an important cancer drug. I always thought it was the drug companies marking thing up to high. lol I will be getting the Thyrogen and scans the second week of April so in just over a week from now.

I did get the ultrasound and she said she can see no tissue at all so that is all clear.

Sorry to hear about your son and his leg. I hope he can start healing that bone soon. Also about your getting sick. Do you think it's from Disney? Lots of germs from all over the world there.

Your trip sounded like lots of fun. Maybe next time let your son and whoever else wants to walk to Epcot walk and you just wait for the boat and meet them there.

Christine, Oh my goodness that shooting caused some scary PTSD issues for you. I am sorry to hear that. I hope you can get some therapy now that you are back on your meds and know what is the PTSD and what is not.

How does the Levoxyl make you feel different than just levothyroxine or synthroid? I am curious because I am 8 months post TT and just don't feel like myself quit yet.

Sounds like you will have a fun summer with the kids back home. Maybe that will help some with the PTSD?

Singing Mom, We are waiting for spring still here in IL too. Hope you DD knee gets better. I need to take my son in for his too because he keeps complaining about his one knee hurting.

Ang

 

[luvmarypoppins]

Christine - glad you got the med but sorry for the other sssues you are having

ang - glad you got the thyrogen even though its so expensive. I am sure we will face that once our ds gets that health ins. We have 2 years for that. I hope you scan goes well I know you you will see a big different with thyrogen versus hypo. Just the headaches and nausea for side effects.

Singing Mom - hmm, I would pick Norway, but then I have been there so I am biased.

Well I cancelled my infusion for tomm. and went to the urgent care today. I couldnt take my sinus pain anymore. The dr. gave me an antibiotic She also said my ear is red. That is really bugging me and says I sound a little congested too. At least my jaw is not hurting like the last time.

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

 

[angwill]

Glad to hear you got an antibiotic for your sinus issues. Hopefully you can get your infusion soon and all goes well.

Can't your son just stay on your plan till he turns 26 or is he turning 26? It is odd that they said the new healthcare makes it so your kids can stay on the plan till they are 26 but my son who is 19 couldn't on my plan I got through the ACA. From what I was offered through the website the lowest deductible was $2500 but it cost more per year than the difference between the $2500 deductible and my $6000 deductible, go figure. Just make sure you figure out the difference between the cost of the plans and their deductibles. You might be better off with the high deductible and banking the difference in the plans.

Christine - glad you got the med but sorry for the other sssues you are having

ang - glad you got the thyrogen even though its so expensive. I am sure we will face that once our ds gets that health ins. We have 2 years for that. I hope you scan goes well I know you you will see a big different with thyrogen versus hypo. Just the headaches and nausea for side effects.

Singing Mom - hmm, I would pick Norway, but then I have been there so I am biased.

Well I cancelled my infusion for tomm. and went to the urgent care today. I couldnt take my sinus pain anymore. The dr. gave me an antibiotic She also said my ear is red. That is really bugging me and says I sound a little congested too. At least my jaw is not hurting like the last time.

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

 

[luvmarypoppins]

Oh happy day! The endo just sent me a letter and said my tsh went from 1.7 to 0.3, so I guess the extra pill on sundays is working.

And more happy..since our wonderful President has decided to sanction Russia, guess who's dh is not going to Russia, yippee! He is coming back a week early and only going to China. Ds1 is coming back 2 days before him.

ang - my ds is 24, he has 2 more years, so I am just preparing since he has so many medical issues, will eventually need a cornea transplant, asthma, the bone stuff etc.

 

[angwill]

Oh happy day! The endo just sent me a letter and said my tsh went from 1.7 to 0.3, so I guess the extra pill on sundays is working.

And more happy..since our wonderful President has decided to sanction Russia, guess who's dh is not going to Russia, yippee! He is coming back a week early and only going to China. Ds1 is coming back 2 days before him.

ang - my ds is 24, he has 2 more years, so I am just preparing since he has so many medical issues, will eventually need a cornea transplant, asthma, the bone stuff etc.

That is great news. Funny that mine was just 0.3 and he took away 175mcg one day to get the number up a bit. lol He was afraid i would end up hypo soon if he didn't. I do hope you get yours to settle where it is.

Glad to hear about your husband being able to be hoem safe with you and your children.

I don't know how you handle having to worry about your son like you do. No human especially our children should have to know all those things are inevitable. I do hope they fix more of the health care issues before you have to worry about his insurance.

Ang

 

[Nora03]

Hi All,
Haven't been on here for awhile as I decided I was just going to hide my head in the sand for awhile and not think about my thryoid. Please wish me luck tomorrow. I'm going for another ultrasound and fine needle biopsy.

Nora

 

[angwill]

Good luck to you Nora. May your untrasound and FN biopsy come out with the best results.

I got my first $5000 thyrogen shot today and the second $5000 thyrogen shot tomorrow. So far I feel no side effects. No head ache or nausea. I figured I would be nausiated since I was assured with the RAI both scan an therapy dose would not make me nausiated and I was so nauseated I was sure there would be toxic waste in my garbage can.

Ang

 

[SingingMom]

Hi All, Haven't been on here for awhile as I decided I was just going to hide my head in the sand for awhile and not think about my thryoid. Please wish me luck tomorrow. I'm going for another ultrasound and fine needle biopsy. Nora

By this time tomorrow it will be done! . Good luck!

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

 

[luvmarypoppins]

Nora - hoping the fna went well for you. Now I know the hardest part is waiting for the results

ang - how was your second thyrogen shot today? That is great that you didnt get the nausea or head ache. How do you like this compared to going the hypo route?

Well I got ds2 sick with my germs. He is on an antibiotic too. I hurt my back. Dont know how. Its only one muscle in a certain part. I went to the er once for this but this pain is bearable , when I went it was not. am taking it easy for sure and resting.

Ds2 went to the ortho today and he said the bone is healing but still wants him to wear the boot.

Ds1 is coming home frm China tomm. I guess I will get an update on dh from him since they have blocked their calls out as usual and I havent heard from him at all except one text.

Thinking of you all. Check in when you can.

 

[Christine]

Hi everyone! Just checking in. It's been one of those "doctor" weeks for me.

Last week I had my annual well woman exam and my GYN reminded me that I still have a cervical polyp and that he'd like to remove it now (he didn't care about it last year). So that was scheduled for April 9th and was supposed to be not a big deal.

I then had my annual mammogram this past Saturday. Always fun.

I noticed last week that I, without even trying, lost about 3 lbs. All of a sudden my pants were a bit looser. I figured it was time for a thyroid panel check as I had been on the Levoxyl for about 4 weeks. Sure enough, those results came back and my TSH went from 0.77 to 0.4 and my T4 went from 1.43 to 1.85. He asked me "how do you feel?" I told him I had lost weight without trying and I still have anxiety that seemed to have picked up. So, I've cut my dose by 1/2 tablet a week. We shall see.

The cervical polyp thing was not all that fun. Not horrific but definitely not fun. It was done in the office, fortunately, but was uncomfortable. It has a 99.9% chance of being perfectly normal but I still will be antsy about that pathology.

The mammogram was normal!

So I think I am done for awhile, but darn, medical visits really make me tense.

 

[angwill]

Great news for me. My thyrogen marker and WBS were normal. The nuc med department said they saw very little thyroid tissue but they said that after surgery too. So six more months and then another round of thyrogen (if insurance will cover it twice in a year) and then another WBS and ultrasound. Deductible will be met by then so no biggie.

Does anyone elses endocrinologist want an appointment with them every 3 months? I am going to talk with him because I come in and he says nothing except to go get labs, or whatever scan and then charges me $165, not to mention the 45 minute drive for something his nurse can call and tell me to get done. lol

I was also reading that the bigger hospitals like Sloan Kettering are doing away with thyrogen and WBS after surgery. They are relying on the tumor marker and ultrasound results and if those are good skipping the WBS. I want to talk to my doctor about that too. It just seems to make more sense. Why subject yourself to thyrogen and low dose radiation and scan if not necessary.

Christine, Glad you got the lady tests done and over with. The cervical polyp doesn't sound like an easy thing at all. I had one years ago but thankfully it dissapeared.

Like you I had been losing weight over the last few months and loving it but when I got my labs and saw the doctor he decreased my dose for one day to get my numbers up a little bit. The weight loss stopped too. Bummer.

LMP, Your going to think I am nuts but for some odd reason my second day on thyrogen I felt better than I have since I was in my 20's before all the thyroid stuff. I had energy and felt good. No side effects at all from the thyrogen.

Sorry to hear your DS2 is sick but glad his leg is healing, that is great news. I hope your back is feeling better now. How was DS1 homecoming?

Nora, Any word on the FNA biopsy? How did it go? When I was getting my scan I saw a woman coming out from her FNA biopsy on her thyroid and thought of you.

 

[Christine]

Does anyone elses endocrinologist want an appointment with them every 3 months? I am going to talk with him because I come in and he says nothing except to go get labs, or whatever scan and then charges me $165, not to mention the 45 minute drive for something his nurse can call and tell me to get done. lol

During the early days after my diagnosis, I too was going every 3 months. They ran labs and doctor was very specific in wanting to know how I felt, plus he was doing manual neck exams.

When things stabilized, I dropped to three times a year. Finally I was going every 6 months and if I ever felt "off" I could call in for a lab order.

My doctor then retired and I started with a new guy. He is much more hands off (and by the time I got with him, I had hit my 15 year anniversary). We started off with 2 times a year. Then, since I was feeling SO good, he only had me come in once a year. That was nice, but odd. Since this last year has been so bad for me with the change in meds and all the stuff in my life, I have seen him 3 times in the last year and have had several lab draws. I seem to be back on my 6 month schedule.

For me, I no longer do Thyrogen because of side effects so it's just Tg labs and ultrasound.

 

[SingingMom]

Early on in my diagnosis I also was every 3 months, then 6 months, then annually. When I changed practices, my new endo wanted to see me 6 months, just to get to know me better. Lol. Now we are yearly, but she has me going for ultrasound of the thyroid bed every other year. Getting ready for my yearly doctor parade. Lol. Internist in two weeks, gyno in two months, cardiologist and endo after that. In the mean time, I have to have a dental implant. Trying to decide when I want to fit that in with summer vacation etc.

DD is in the middle of her PT. Apparently early years of walking on her toes caused certain muscles to put extra pressure on her knee caps. Figure skating and equestrian riding/jumping and the workouts involved exasperated this. The mega walking she did in London put her over the edge pain wise. Therapist feels she can "teach" the other muscles in her legs to do their proper job. She's off to the junior/senior ball tonight. She'll be starting her senior year of college in Sept. Where do the years go???? "SingingMom" ....Sent from my iPad using DISBoards

 

[angwill]

During the early days after my diagnosis, I too was going every 3 months. They ran labs and doctor was very specific in wanting to know how I felt, plus he was doing manual neck exams.

When things stabilized, I dropped to three times a year. Finally I was going every 6 months and if I ever felt "off" I could call in for a lab order.

My doctor then retired and I started with a new guy. He is much more hands off (and by the time I got with him, I had hit my 15 year anniversary). We started off with 2 times a year. Then, since I was feeling SO good, he only had me come in once a year. That was nice, but odd. Since this last year has been so bad for me with the change in meds and all the stuff in my life, I have seen him 3 times in the last year and have had several lab draws. I seem to be back on my 6 month schedule.

For me, I no longer do Thyrogen because of side effects so it's just Tg labs and ultrasound.

My endo has never felt my neck nor does he ever ask how I am feeling. lol When I tell him how I am feeling he tells me to see my GP about it. Seriously, I told him I have had abdominal issues since the radiation therapy and joint pain and cramping since surgery and he told me it is not thyroid related to go see my GP. I told him I was losing my hair really bad and he did a ferritin test and said there was nothing I could do about it. If I say nothing he simply comes in and tells me to go get labs or whatever and that is it. lol If there were another endo less than 2 hours away I would switch. Want to switch endos? lol

 

[Christine]

My endo has never felt my neck nor does he ever ask how I am feeling. lol When I tell him how I am feeling he tells me to see my GP about it. Seriously, I told him I have had abdominal issues since the radiation therapy and joint pain and cramping since surgery and he told me it is not thyroid related to go see my GP. I told him I was losing my hair really bad and he did a ferritin test and said there was nothing I could do about it. If I say nothing he simply comes in and tells me to go get labs or whatever and that is it. lol If there were another endo less than 2 hours away I would switch. Want to switch endos? lol

That sounds pretty awful. Do you have a good primary care doctor that would manage your thyroid issues?

 

[angwill]

That sounds pretty awful. Do you have a good primary care doctor that would manage your thyroid issues?

Since the only reason I have to go to a primary care doctor is for my thyroid I have not been able to find a good one for several years. They either move on or are not great. There is a female doctor that is in our area one afternoon every two weeks I saw one time to get orders for the FNA biopsy and I really liked her. The doctor I had been seeing told me I had cancer before biopsy and then wanted me to supress and do a WBS before the biopsy that would have wasted months so I found the new doctor. I think I might try going back to her after my year check up. She was awsome. I just don't like the limited hours in our area. We will see how it goes. Maybe I can set up a physical with her and talk to her then.

Great idea, thanks.

 

[TwizzleMouse]

Hi. I was diagnosed with hypo back in Sept 2013. I had gained 80 lbs in a matter of months and felt sluggish and all of your typical symptoms. I was originally put on generic synthroid. I was allergic to it. So Endo put me on brand name. I have been taking that for 5 months and have noticed major breakouts/rash on my face and neck so bad that it drives me crazy. I just want to claw at my face. Nothing takes it away. The only thing it could be is the Synthroid. On top of it, I don't feel like it's helping me (I take 50mcg). I called and complained (I swear they thinks i'm nuts), and they are putting me on 50mcg of Tirosint.
I was reading online that they should be starting me out at 25mcg bc it's so natural and a gelcap and it absorbs better and if you take 50mcg to start it caused hyperactive effects as well as hair falling out and heart palps, and insomnia among other scary things.

Have any of you taken this and can help me? Please?

 

[Christine]

Hi. I was diagnosed with hypo back in Sept 2013. I had gained 80 lbs in a matter of months and felt sluggish and all of your typical symptoms. I was originally put on generic synthroid. I was allergic to it. So Endo put me on brand name. I have been taking that for 5 months and have noticed major breakouts/rash on my face and neck so bad that it drives me crazy. I just want to claw at my face. Nothing takes it away. The only thing it could be is the Synthroid. On top of it, I don't feel like it's helping me (I take 50mcg). I called and complained (I swear they thinks i'm nuts), and they are putting me on 50mcg of Tirosint.
I was reading online that they should be starting me out at 25mcg bc it's so natural and a gelcap and it absorbs better and if you take 50mcg to start it caused hyperactive effects as well as hair falling out and heart palps, and insomnia among other scary things.

Have any of you taken this and can help me? Please?

The first thing I would have you do is call the doctor's office and ask them for a copy of the lab results for your thyroid panel. If that's a hassle for some reason, just have them read you off the values for TSH and Free T4. I'd really like to know how hypothyroid you are before I could really comment on the dosage.

Having said that, I don't have a thyroid so when I don't have meds I get very, very hypo. For people with slow acting thyroids, 25 mcg is the usual starting dose and they work their way up. If you are very hypo, though, 50 mcg is not actually that bad.

Tirosint has none of the usual fillers and it absorbs well in most people. I took it for a few months last summer and did not do well on it as it kind of gave me bowel issues. I think the dose was to much for me or it was getting into my system too fast. So I had to stop. I didn't feel like cutting back my dose and experimenting.

You are most likely have a reaction to one of the dyes or fillers in the regular thyroid preparations. You should compare Synthroid and the generic brand you were taking (you can get all that info online) and see if you can pin it down to a specific filler. It's really important to know.

There are many people out there doing very well on Tirosint so that would be great if it works. Also know that as your body gets used to synthetic thyroid hormone, you may feel worse before you feel better. There is an adjustment period. If you don't get a rash or anything with Tirosint, try to give it 6 weeks, even if you don't feel great.

 

[luvmarypoppins]

Nora - have you gotten your results yet from the fna?

Singing Mom - did you make a decision about what adventure you are going on?

Christine - I dont know how it would be with the college kids moving back home after graduation. I laugh because none of mine have ever moved out yet, unless you count the one night ds1 left. My oldest ds really makes a low salary and he is saving for a house down payment. I think with the high cost of living here they will be here for quite a while. Most of the ds married friends live in their parents basements. That is life in the burbs around here.

Miss Micayla posting. I assume she is doing well with the little guy.

I hurt my knee. I have been wearing my knee brace. I am sure the inevitable ortho visit will come soon. I am sure he will use the s word. This knee has been on borrowed time for a long time now and especially with our family history of the connective tissue stuff. Even ds1 is making an ortho appt.

I am also in the midst of scheduling or I should say rescheduling my reclast infusion I think I am going May 7.

Busy month next month, 2 of the ds graduating and then also ds3 has his nursing pinning ceremony.

My ds is in california right now. I lose track when he is going sometimes. Suffice to say he is gone alot. Well I used all his ff miles for disney, so time to rebuild them, lol.

I am so far behind on my neck sono. Another appt. to make.

Check in when you can.