The THYROID Thread

[luvmarypoppins]

Tina - so sorry you are going through all of this. I am sure its frustrating. I hope your surgery goes well and that your move to Texas goes well too. Are you going to Fort Hood? We lived in the Dallas area for 4 years. I really loved Texas.
I did not enjoy the fire ants, ice storms or tornadoes. The people there are so nice. I hope you get adjusted to your new home. I honestly wish I lived there again. I have a few friends from our old church there. One I e mail alot. Check out San Antonio when you can and Dallas too.

Christine - sorry you had to deal with all that stress about your dd on top of your not feeling all that well. I know my cousin got the lojack stuff on her kids laptops at college so they could get found if stolen too. I am sure its scary and frustrating for all of you at the same time. Hoping it all works out.

I am stressed beyond stress right now. I really dont handle stress and problems well at all for sure. At least now our big meeting that was suppose to be on Friday is postponed till March 30 so that will help a little I think. Now our brand new washer is broken. That is beyond stressing me out. I am having dh call tomm. I think I would go nuts talking to someone right now.

Hoping everyone else is doing o.k.

 

[1Grumpy9]

1Grumpy9- sorry you have to deal with all of this. I know it can be frustrating dealing with doctors, insurance, tests etc.

Will you be staying with your old endo or do you have to go to the group one?

Will your ins. pay to have you get the blood tests at a local hospital? I know mine really wont unless its something special, like the radiation testing, (pregnancy etc).I am blessed that I just have to go to the next town for my tests.

I hope it will all get straightened out. Try not to stress too much and I hope your new labs come out well for you.

I am actually going to stay with her...My family doctor is even going to be sending patients to her even though she is no longer affiliated with the same group. He really likes her and doesn't like the one that is going to be affiliated with them when the switch is done.

I am not sure about the bloodwork yet, but there is a place near the mall called Quest Labs that apparently does really good work. I am not a difficult patient when it comes to getting blood taken. I have a really good vein in the inside of my arm that never "hides" or rolls.

I haven't stressed too much about her moving...I have been more stressed with the pharmacy. I had a nice go round with them last month when I got my script filled (they didn't fill the entire thing and then said they did and told me that I had to let them know when I picked it up that there might be more than one). I have since moved my script to another pharmacy because I have had problems with the one pharmacist that is at that is at that pharmacy.

I should be scheduling an appointment with her here shortly (within the next couple of weeks). After I get my labs and I see her I will get an update to everyone.

 

[WDWDancer]

Hi Everyone - sorry I have been mia around here...I have been trying to find my way out of hypo-hell! I had my RAI (5 wks of LID and 5 wks of no meds)...my TSH the week prior to RAI was 188 we thought about going to the ER a couple times. The muscle pain was so bad, it was killing me to walk from the living room to the bedroom, miserable time I am just thankful I don't have to do it for another 6 months!

The RAI was anti-climatic - I got my pills and went home to bed I still am having some "taste" issue's, things I use to love I don't crave, the salivary glands on my right bottom jaw have decided to swell up and annoy me now. I am not sure if it is from the RAI or just still being hypo but I have felt flu'ish for the last couple of weeks....no food sounds/taste good, headaches, swollen/sore throat, and a bunch of lymph nodes are enlarged.

I go see the endo this week (thursday) her office has really angered me...they know how high my TSH was and never once called to check in, give me results, etc. I have called the office on several occasions because of symptoms I was having but have just been told to take OTC meds, see my family doctor, probably a cold. This is my 3rd endo and it is so frustrating - I live in Northern VA but actually made an appointment to go to Cleveland Clinic a THYCA doctor from there wrote a book I read while in isolation and I really like his approach to patients....I have been Hypo since October/November and just want to get my TSH back below 10 and I would be happy

So for my ranting - I hope you are all feeling good - I am off to nap!

 

[Christine]

Hi Everyone - sorry I have been mia around here...I have been trying to find my way out of hypo-hell! I had my RAI (5 wks of LID and 5 wks of no meds)...my TSH the week prior to RAI was 188 we thought about going to the ER a couple times. The muscle pain was so bad, it was killing me to walk from the living room to the bedroom, miserable time I am just thankful I don't have to do it for another 6 months!

The RAI was anti-climatic - I got my pills and went home to bed I still am having some "taste" issue's, things I use to love I don't crave, the salivary glands on my right bottom jaw have decided to swell up and annoy me now. I am not sure if it is from the RAI or just still being hypo but I have felt flu'ish for the last couple of weeks....no food sounds/taste good, headaches, swollen/sore throat, and a bunch of lymph nodes are enlarged.

I go see the endo this week (thursday) her office has really angered me...they know how high my TSH was and never once called to check in, give me results, etc. I have called the office on several occasions because of symptoms I was having but have just been told to take OTC meds, see my family doctor, probably a cold. This is my 3rd endo and it is so frustrating - I live in Northern VA but actually made an appointment to go to Cleveland Clinic a THYCA doctor from there wrote a book I read while in isolation and I really like his approach to patients....I have been Hypo since October/November and just want to get my TSH back below 10 and I would be happy

So for my ranting - I hope you are all feeling good - I am off to nap!

WOW, 188. The highest mine got was 148. The flu-like feeling is from the RAI. I remember that distinctly. Yes, the hypo is bad enough but that just pushed it over the age. The taste issues, salivary glands and flu-like stuff is from that.

I am also living in NoVA. I have a good endo (but never went through the hypo with him--my old endo retired). I really like him and his staff so if you need a recommendation, let me know.

Who is the Cleveland Clinic doctor?

 

[Christine]

After months of what I call "doctoring", it is finally over.

Starting in November, I had to go to the gastroenterologist, then the endo, then the resulting DEXA scan and neck ultrasound, then it was the GYN, which resulted in a mammogram. Then there was my GP because my hands were turning blue.....

Anyway, I finally got the last of my results today.

Last night, I got my mammogram results by letter (NORMAL--WHEW) and today my endo called me back to discuss the very small increase in thyroid meds.

At my last check, my TSH was at 0.5. My doctor wanted it lower so I increased my dosage by 1/2 tablet of .137 a week. About 4 weeks later, I started having minor heart palps and I got warm very easily. My hands were turning bright red whenever I got hot. Then the day before my blood draw, I went for a walk and as I was going up the hill, I got the strongest heart palps ever. I felt fine but it actually made the top of my chest feel like a weight was on it. Not fun.

So I had my re-test and just 1/2 tab extra per week drove my TSH down to 0.07. Based on my symptoms, my endo is moving me back to my usual dose and we will just be happy with a TSH of 0.5.

For the next few months I have NO appointments!!!

 

[luvmarypoppins]

wdwdancer - good to see you posting. Sorry you are having all those post rai issues. If your salivary glands are swollen, you could try a warm compress. I hope your check up goes well tomm. and that you find an endo that you like and can work with. I know Micayla had alot of the taste bud issues, so she might be able to chime in about that. I just felt generally crappy post rai but no specific issues. My salivary glands are permanently damaged from the rai. I just deal with it. Mostly lack of saliva issues.

Christine - I am glad you have no more appts. I hear you loud and clear. I am sure you are so happy. A good reason to celebrate. I always breathe a sigh of relief with my mammo too. I already had one non cancerous tumor out so they always see lots of scar tissue with me. Hope things have settled down with your dd too and things can get back to normal.

I have a month till the blood tests. I noticed I am still so tired. Fell asleep last night in the chair. So cold all the time and out of breath alot and can feel the heart palp when I was walking to a meeting yest. We shall see

 

[WDWDancer]

Christine - That is so exciting that you are "doctor free" for the next few months!!

I am going to see Dr. Mario Skugor April 2nd for another opinion and hopefully if all goes well I will just go there for my follow up work.

I had my appointment yesterday with the endo - I wouldn't call it a productive appointment - I went for more bloodwork today so now just waiting for those results. You will all love these gems that I got...since I have not gained weight I must not be truly hypo....."real" doctors do not give T3 (which is why I did not receive it to prepare for RAI and why I WILL not be getting it now)....and my favorite was that since I have been back on my medication for almost 5 wks these labs should reflect a suppressed TSH and if not its because I am sabatoging myself with my diet! Oh, she will not increase my dose from 112 because I do not weigh enough.....I love my husband his advice was we need to stop this "clean" eating and hit up McDonalds and Dairy Queen

I have 3 lymph nodes on the right side of my neck which are enlarged and several under the jawline on the right side which are also enlarged. Not sure what the plan is when I asked she said we need to wait on the lab results?

So I guess I am in wait and see mode - luvmarrypoppins I am with you in the "we shall see"

Hope you all are feeling better

 

[Christine]

Christine - That is so exciting that you are "doctor free" for the next few months!!

I am going to see Dr. Mario Skugor April 2nd for another opinion and hopefully if all goes well I will just go there for my follow up work.

I had my appointment yesterday with the endo - I wouldn't call it a productive appointment - I went for more bloodwork today so now just waiting for those results. You will all love these gems that I got...since I have not gained weight I must not be truly hypo....."real" doctors do not give T3 (which is why I did not receive it to prepare for RAI and why I WILL not be getting it now)....and my favorite was that since I have been back on my medication for almost 5 wks these labs should reflect a suppressed TSH and if not its because I am sabatoging myself with my diet! Oh, she will not increase my dose from 112 because I do not weigh enough.....I love my husband his advice was we need to stop this "clean" eating and hit up McDonalds and Dairy Queen

I have 3 lymph nodes on the right side of my neck which are enlarged and several under the jawline on the right side which are also enlarged. Not sure what the plan is when I asked she said we need to wait on the lab results?

So I guess I am in wait and see mode - luvmarrypoppins I am with you in the "we shall see"

Hope you all are feeling better

Oh good Lord, you've GOT to tell me who you are seeing. My last two endos have both used T3. Neither one of them are fans of using it while on T4 *if* the T3 levels are normal, but would use it if a patient was found to be a non-converter. But they definitely give it to you if you are prepping for a scan.

Are the lymph nodes recently enlarged? This could definitely be due to the RAI.

This doctor sounds like a nightmare.

 

[mrsklamc]

Christine- I'm glad you got good results.

Lovemygoofy and WDW dancer...I'm sorry you're joining this roller coaster with us...but you couldn't have better folks to walk you through...Don't know what I would have done w/o this board.

 

[luvmarypoppins]

O.K. I officiallly get the stupid thyroid award of the day, or something like that.

Yesterday I was doing my pills for the week. I keep all the bottles in one big baggie and then put the weeks supply into the individual days in the pill holder that ds20 game me.

Well this morning when I got up to take the synthroid, I thought to myself, gee, this pill looks so purple to me, yes a bright purple.

So I wake up and really looks at it without my glasses and with my tearing eye and head cold etc. I see, why yes, its none ofter than the 175 dose, which I am not suppose to take. I got it mixed up with the new 150 dose which is a dull purple.

Well then I went back and looked at the 175 bottle. I honestly dont know how many I had left, but it looks like most of those are there, I think it was a little less than half a bottle left.

So now I am wondering if that mistake if I even made one in the other week etc. might mess up the blood test in a couple weeks. I sure hope not.

I dont know if I should even tell the endo this unless the blood test is bad. Not to say I dont want to tell her, I just think I might have not actualy taken any more of the 175 etc.

Oh well, another woncderful day of my thyroid cancer world.

 

[luvmarypoppins]

Anyone see the thyca home page with the little blurb about the ladies running at the WDW Marathon for thyca research.

I thought that was really neat.

hmm, if they are disers then they need to find this thread and join us!

 

[luvmarypoppins]

Hope everyone is doing well.

I am still tired and cold. I was so cold yest. I had some soup for lunch.

Next week is the blood test. Great. I will also tell the endo my symptoms when she calls with the results.

Also I read one poster on the thyca website say that the eye surgery I am suppose to have didnt work for her. I really dont want to go through all that for nothing etc. And then she commented that there is a little tube sticking out of your eye area? Hmm, the surgeon never discussed this with me. I definetly lurk alot over there.

Well due to my family problems and my dh always traveling I havent called the eye surgeon for a follow up yet. The surgery is suppose to be in april with a 6 week recovery time and 3 days minimum on pain killers etc.

I am so on the fence about this right now.

 

[WDWDancer]

Hi everyone seems like it has been quiet here for awhile - hopefully that means everybody is feeling well

Luvmarypoppins - I did see that on the ThyCa home page regarding the run at WDW..it was pretty awesome! I tend to lurk over there a lot too to read all the different experiences. So sorry to hear about the eye surgery - I definitly would call and question the surgeon when you feel up to it.

My TSH is still crazy high...64 when I had my labs done 2 weeks ago. My T3 is low and T4 is on the borderline of normal/low. The endo did up my Synthroid to 137 mcg. I tend to have a couple good days followed by really bad days. It is so frustrating and has been making work almost impossible.

My biggest complaint is the muscle cramps and muscle fatigue - it feels like it takes all my energy some days just to move....I assume that it is normal when hypo. I saw my family doctor about a week ago (check up) and he mentioned to me that I have been hypo so long (since September of last year) that my body is hitting the wall.

 

[Christine]

Hey, does anyone here watch New Girl? It's my secret guilty pleasure!!!

Anyway, on this past Tuesday's show, Nick gets a football injury and ends up at the GYN for an exam (don't ask). The doctor feels a lump on his neck and immediately suspects a thyroid tumor (even thought where she felt was NOT the thyroid). The rest of the show is about him and his friends thinking he's got cancer and is going to die and they are googling thyroid tumors. It was kind of funny. Not overly accurate but definitely a thyroid cancer awareness raiser!

WDWDancer--You poor thing, that is a high TSH to be having for so long. I hope this new dose works quickly. I bet you might need to go to .150 eventually.

 

[Southernmiss]

Hi everyone seems like it has been quiet here for awhile - hopefully that means everybody is feeling well

Luvmarypoppins - I did see that on the ThyCa home page regarding the run at WDW..it was pretty awesome! I tend to lurk over there a lot too to read all the different experiences. So sorry to hear about the eye surgery - I definitly would call and question the surgeon when you feel up to it.

My TSH is still crazy high...64 when I had my labs done 2 weeks ago. My T3 is low and T4 is on the borderline of normal/low. The endo did up my Synthroid to 137 mcg. I tend to have a couple good days followed by really bad days. It is so frustrating and has been making work almost impossible.

My biggest complaint is the muscle cramps and muscle fatigue - it feels like it takes all my energy some days just to move....I assume that it is normal when hypo. I saw my family doctor about a week ago (check up) and he mentioned to me that I have been hypo so long (since September of last year) that my body is hitting the wall.

I just migrated here from the Community/Budget boards. And couldn't help reading your post and wanted to let you know that I have been hypo since the age of 10. That's over 30 years ago.

For the most part, I trucked right along with my dose of Synthroid until after one of my pregnancies 13 years ago. Something went crazy with my dormant thyroid and my GP couldn't figure it out so he referred me to an endocrinologist. It is sooo good to talk to a dr. who actually gets the thyroid.
She got me back on track and I have just needed an annual checkup since then.

I was at my endo checkup last year and complained of the bolded. My #s were in range with Synthroid but I just couldn't shake the body aches. She lowered my Synthroid dose and added some Cytomel daily for the t4.

It has been a Godsend! No body aches, lost a few pounds and much more endurance for daily activities plus a few extra activities.

Maybe you should ask about it?

 

[luvmarypoppins]

Southernmiss - welcome to the board

Christine - sorry you are not feeling well, saw your other thread on the cb

Well guess who called me twice already, none other than the eye surgeons staff. I havent called back yet. Dh and I talked and with all going on, we are thinking maybe August. In May is our Disney trip, in June I am prepping to teaching in July for VBS at my church and then there is august. I dont want to ruin my whole summer either.

Made the blood test appt. for saturday.

Even my ds commented to me that I am not looking or sounding good, gheesh. I told him yes I am out of breathe alot and my bones ache and I am tired etc.

I am sure the endo is gonna love hearing all of this for sure.

Hope everyone is doing well

 

[mrsklamc]

Had my TSH tested last week, it's at 0.03, I think she wanted it around 1 so I wonder if she's going to lower the dose. I see her Tuesday so I'll let you know. At least we are having gorgeous weather here and extended family is looking at Disney for next year so I have something to plan.

 

[luvmarypoppins]

Micayla - hope your endo visit went well today. Glad to hear your are planning a disney trip.

Well there was a message on my answering machine that the endos office said "my numbers are good" and the endo wants you to stay on the same dose med. Hmm, usually the endo calls me herself. I dont like that and I wanted to know the actual numbers. So I guess I will have to call back as they cancelled my July appt. Love how they always do that and then I also want to describe my other symptoms to her and see what she thinks etc. I am praising God for the good report though.

Finished making the rest of our adrs for the May trip. Now just praying the family situation will be manageable by then etc.

Hope everyone is well.

 

[Christine]

Micayla - hope your endo visit went well today. Glad to hear your are planning a disney trip.

Well there was a message on my answering machine that the endos office said "my numbers are good" and the endo wants you to stay on the same dose med. Hmm, usually the endo calls me herself. I dont like that and I wanted to know the actual numbers. So I guess I will have to call back as they cancelled my July appt. Love how they always do that and then I also want to describe my other symptoms to her and see what she thinks etc. I am praising God for the good report though.

Finished making the rest of our adrs for the May trip. Now just praying the family situation will be manageable by then etc.

Hope everyone is well.

I hate when they don't tell you the numbers. I'd be interested in hearing what they are considering you have been feeling so poorly.

I'm finally coming out of my 4 week "cold". It started as some cold but I think turned into sinusitis for the last two weeks. I knew it wasn't an infection and I am totally against antibiotics for that type of thing so I just toughed it out. It finally "lifted" on Monday. I think me pushing the Sudafed helped although that stuff does a real number on me. It's nice to feel sort of normal for a change.

 

[mrsklamc]

Glad to hear things are going well for you, Christine and LMP. Visit was uneventful, she doesn't feel anything in my neck and I'm not shaking, said my dose was right where she wants it, she wants another TSH and an unstimulated Tg test in 6 weeks.