The THYROID Thread

[Christine]

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.

You know, I have the *same* problem when that happens. It makes me feel really tired and run down. Thought it was just me.

 

[luvmarypoppins]

Welcome J. Cano - your house sounds like a bunch of fun with everyone on synthroid. I think my dh would head for the hills! One of me on synthroid is enough for him for sure. I have to put up with 4 males in my home, so lots of testosterone,

Jenn - My dose went down from the 200 to 175 and at first I got really tired too, but now i think it seems to be leveling off. I notice alot of the hyper emotional stuff is so good now. Even dh said I was pretty good today after sitting in traffic on the Belt Parkway for over an hour with the rain and flood issues etc.

Micayla - Wishing you all the best on the diet. I didnt try the cakes because my my rad. onc. refuses to let us have stuff like cocoa powder etc. I did see they have some new recipes using the homemade applesauce to make banana bread or something else that did sound yummy. Well on my trip to the amish country I found out the Indiana Amish people work in the rv vehicle industry/ They seem so different from the Amish in Penn.That was so sad what happened at your state fair.

I had a good trip It was good to get away from not thinking about medical stuff for a while. I couldnt walk so much with all my joint,spine, issues etc. I really need that reclast infusion. Oh, my ds just told me the endo secretary called and I guess I will call her back to schedule the infusion. I cant do it now as dh is leaving for China on Friday for a week and then I think the lst week of sept. or around then he is going to Seattle and San Francisco for a week. I dont want the ds to have to take care of me when I get the flu like symptoms. They are not very caring, helpful etc.

 

[mrsklamc]

Micayla - Wishing you all the best on the diet. I didnt try the cakes because my my rad. onc. refuses to let us have stuff like cocoa powder etc. I did see they have some new recipes using the homemade applesauce to make banana bread or something else that did sound yummy.

That was so sad what happened at your state fair.

I cant do it now as dh is leaving for China on Friday for a week and then I think the lst week of sept. or around then he is going to Seattle and San Francisco for a week. I dont want the ds to have to take care of me when I get the flu like symptoms. They are not very caring, helpful etc.

The diet is much easier so far since I am not hypo as well. I was so emotional about my cravings last time. I did see a ghiardelli chocolate bar at the store that was 100% unsweetened cocoa today....

The stage collapse was very tragic. We drove by on the way downtown this afternoon and there were still a ton of police and emergency vehicles there, investigating still I'm sure.

I'm sorry your sons aren't more helpful.I'm sure I wouldn't have been at that age either; I wish I lived closer!

 

[luvmarypoppins]

I just listened to the endo secretary message.

She says, I am calling to schedule the infusion. Oh goody, but wait, she says..do you have the medicine???

Last time they said they were getting it for me. I dont know if they changed their rules again. I will have to call her back and see what s going on. The endo wrote me a script but it has expired now.

Oh well back to my normal reclast runaround. Who would have thought this would turn into something so drawn out and complicated.

 

[lovemygoofy]

Hi everyone, I'm Tina. I'm sure some of you know me.

Well after years of a battle I was seen by a Reproductive Endo. The first question he asked was if I was being treated for my thyroid condition. I looked at him like he was crazy as I've never been told anything like that.

He said the labs were plain as the nose on his face that I have a thyroid condition but would do more labs just to see. So fastforward a couple weeks(I had alot of labs done) and he said I have a hypothyroid but it swings both ways. He did testing over a series of weeks to follow my cycle. I started the synthroid on Friday.

I'm reading this thread and just about in tears. For the past 6 months I have had so much hand and finger muscle pain. I couldn't open a water bottle and sometimes I'd drop my pen while writing. I have been so scared that I was also getting MS as I know a couple people with the symptoms. The doctor assured me that this was all part of a thyroid problem that should have been taken care of at least a year ago if not longer.

Thank you all for sharing your stories and symptoms and what works for you. I guess this will be a long road for me but at least I'm not in the dark going down it.

 

[luvmarypoppins]

Hi Tina and welcome!! Of course we know who you are sweetie

I know you have been through so much but it sounds like you are on the right track with this doctor.

Christine is the resident expert here and she also lives in Va like you, hmm maybe you two are by each other???

Might be helpful to keep a little notebook for any questions, blood work etc.

Can you share what your synthroid dose is?

Feel free to ask anything you want here. Everyone will try to help you.

Personally I take the name brand as I dont want to deal with all the filler issues of the generics and my ins. co. wont pay for it though, but its a small price to pay for my health. My dose is 175 but that is because I have thyroid cancer.

Dont feel bad about the lack of a diagnosis for a long time. I too went through that. My reg. gp was totally clueless. He did a sonogram about once a year but I never had thyroid blood tests.

Hang in there Wishing you all the best always.

 

[Christine]

Well Tina, I'm sorry to have to welcome you to our little group but at the same time is it weird for me to say that I'm happy you have a thyroid condition????

I'm hoping this will really turn things around for you?

When the doctor says that you "swing both ways" does that *really* mean that you have Hashimoto's thyroiditis (which is the only process I know of that can cause a person to be hyper at times as well as hypo at times)? I'm by no means an expert on Hashi's but I am wondering if he gave you that diagnosis.

I remember when I was very hypo I had terrible carpal tunnel syndrome and cramps in my calves. The good thing for me is that I knew I was hypo so I didn't have to wonder what was wrong with me. My vision got a little wonky too!

Please let us know how you are doing. It's great that even with the thyroid stuff going on, you were still have to lose all the weight you did. You might see a little more happen now.

 

[cristielf]

I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer. I'm due to get Thyogen injections next month prior to my annual LID scan. Anyone get this? what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else

 

[Christine]

I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer. I'm due to get Thyogen injections next month prior to my annual LID scan. Anyone get this? what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else

I was dx'd with papillary back in 1995. I don't have an ear-to-ear scar, but I have a fairly noticeable one due to having two surgeries and NOT having a plastic surgeon at the surgery.

I had Thyrogen injections three times. They make me fairly nauseous and tired but nothing awful. On my third time with them, I had an adverse reaction so I won't be using them again, but most people do just fine with them.

I will say that the needle they use for Thyrogen is VERY small/fine and virtually painless. I was scared too but it was easy.

 

[mrsklamc]

I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer. I'm due to get Thyogen injections next month prior to my annual LID scan. Anyone get this? what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else

Hi! I had both Papillary and Follicular. After what you've already been through, the injections will be a breeze! I'm doing my 2nd go round with them on Monday and Tuesday of next week. The first time they just made me pretty tired and gave me a headache, so I just plan on going home and going to sleep!

Welcome! There are great ladies on this thread (and the occasional guy) and it has been a huge help to me on my cancer journey.

 

[luvmarypoppins]

I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer. I'm due to get Thyogen injections next month prior to my annual LID scan. Anyone get this? what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else

Welcome! I have Papillary thy ca too, stage 4, but mine also is the rare and aggressive columnar cell variant. I have a huge scar looking like a smile and a big drain hole since that had to stay in for about 3 weeks post op due to all my complications. My tumor was 12.5 cent. and was crushing my trachea. I also had a secondary tumor that I think was about 4 cm on the L side of my neck and they werent quite sure what it was but they said it was acting like lymphoma at one time? The path said not thyroid cancer though, just a lymph node tumor? I am rare and strange as always. Doctors love me.

I also have a jagged scar on the L side of my neck where I had the dissection and 47 lymph nodes out. I actually had 3 surgeries in 14 hours. 2nd one for post op bleeding and the 3rd one was another surgeon figured out my jugular vein had burst. I had to be placed in a coma for 2 days and needed 7 pints of blood. Its a miracle from God that I am still alive today. Also my dh insisted on pushing my bed down to the or., good as the 2nd surgeon told him I only had 15 minutes to live.

I just had my 3rd round of thyrogen in May. No diet this time or scan, just the blood test. I only get the shots in my arms. This time I had a sore arm for days on the L side. The other side was fine, but maybe as it was done by another nurse? First time I had headaches and nausea. Last year just headache and slight nausea. This time was very bearable, just slight headache.

My initial dose of rai was 200 and they just lowered my synthroid dose to 175, so next month we will see how that is going with the blood testing.

Can you share if your recurrence was on the same side if you had an initial lymph node removal? I am curious as my endo said since they have removed most of the L side, she thinks it will come back in my R side.

I also had a little scare the other month, but it turned out to only be a level 2 infected lymph node on my L side nearer to my ear verses where the dissection was.

Wishing you all the best.

 

[lovemygoofy]

Hi Tina and welcome!! Of course we know who you are sweetie

I know you have been through so much but it sounds like you are on the right track with this doctor.

Christine is the resident expert here and she also lives in Va like you, hmm maybe you two are by each other???

Might be helpful to keep a little notebook for any questions, blood work etc.

Can you share what your synthroid dose is?

Feel free to ask anything you want here. Everyone will try to help you.

Personally I take the name brand as I dont want to deal with all the filler issues of the generics and my ins. co. wont pay for it though, but its a small price to pay for my health. My dose is 175 but that is because I have thyroid cancer.

Dont feel bad about the lack of a diagnosis for a long time. I too went through that. My reg. gp was totally clueless. He did a sonogram about once a year but I never had thyroid blood tests.

Hang in there Wishing you all the best always.

Thank you for the warm welcome. I can't say I'm real happy right now as I'm a big emotional mess to be honest. I'm taking a low dose of synthroid right now at 25mcg. I don't even know enough to even ask questions. I'm reading up when I have time but I have two different medical diagnosis to juggle.

In addition I have also been diagnosed with a sever case of PCOS and starting metformin and it's miserable. The doctor wants me to escalate the dosage to 2000mg by months end if I can tolerate it but right now I cringe at the thought.

At least I'm getting some help and the doctor really is a nice guy. Blunt and not real personable but certainly seems competent and I appreciate that. I do hope you are feeling better .

Well Tina, I'm sorry to have to welcome you to our little group but at the same time is it weird for me to say that I'm happy you have a thyroid condition????

I'm hoping this will really turn things around for you?

When the doctor says that you "swing both ways" does that *really* mean that you have Hashimoto's thyroiditis (which is the only process I know of that can cause a person to be hyper at times as well as hypo at times)? I'm by no means an expert on Hashi's but I am wondering if he gave you that diagnosis.

I remember when I was very hypo I had terrible carpal tunnel syndrome and cramps in my calves. The good thing for me is that I knew I was hypo so I didn't have to wonder what was wrong with me. My vision got a little wonky too!

Please let us know how you are doing. It's great that even with the thyroid stuff going on, you were still have to lose all the weight you did. You might see a little more happen now.

Hi Christine! Thanks for the welcome to this great club. I haven't been diagnosed with Hashi yet. He wants to continue to monitor me for a bit longer. The doctor said that my levels are rising and then dropping but not necessarily into bad levels but because my levels rise and then might drop the next day it's putting me into a spin. Sometimes litterally I feel!

All these symptons that I thought were just crazy apparently really make sense with this diagnosis. I do try to keep hope that it will help with the fertility issues and weight as well. The doctor was amazed that I've managed to keep any weight off but now have just hit a wall not gaining but not loosing no matter what I do.

The doctor does seem to think with the thyroid medicine and the PCOS medicine that he anticipates more weight loss. He didn't mention numbers but he did say double digits so we'll wait and see.Thank you again and hopefully I will learn enough to even ask more questions.

 

[mrsklamc]

Tina-

I have PCOS too. Diagnosed at the same time as my cancer.

The metformin- are you taking the 'ER' version? People seem to tolerate it better. Also, are you taking it with food? The only other thing I can suggest is to avoid really sugary foods while on it- pop, etc will really make your insides act up.

 

[WDWDancer]

Morning Everybody,

Well yesterday was an interesting day. I went to see a new endocrinologist who was recommended to me by my neurologist as I still have been feeling horrid but my current endo doesn't want to change my meds since the numbers are good. The reviews I had read on-liine of this new endo were horriable but surprise surprise my husband and I really liked her. She explained things very direct, but actually listened to me and my story.

I have an official diagnosis of hashimotos now and am scheduled for a total thyroidectomy in September (go on August 30th for my pre-op). I am 25 and nervous for the thyroidectomy but I have a mass on the right lobe that has been growing and new nodules on the left lobe. It is a relief to finally have a name and plan but now I am worrying about what taking the thyroid out will do.

Thanks everyone I hope you're all feeling better

 

[1Grumpy9]

wdwdancer...I had a total thyroidectomy 5 years ago this week, and the only thing I had to deal with is my levels really screwed up afterwards. Ohh and they had to take my parathyroid which also took my blood calcium down too. Now I struggle with getting the amount of calcium needed to be "normal". A little advice, if you are a side sleeper, you probably won't be able to sleep that way for a couple of days after your surgery. Also, a soft diet is what I found worked the best since hard or solid foods didn't go down my throat that easily (the hospital tried to give me french toast the morning after surgery...let's say that didn't work out so well...LOL). I ate pudding, applesauce, jello, mashed potatoes a lot for about 2 weeks until my throat was healed enough to handle more solid foods.

An update from me...I just had another set of labs done this morning, and I should find out either tomorrow or Monday about my levels after moving to a lower dose of this new medicine. When I find out I will let y'all know!!!

 

[dischick4778]

Hi All, just checking in. Finally feeling better with my new, lower dose. And I am actually feeling a bit more in control when stressful situations arise. I think before I act, which was not an option when I was on that high dose.

Saw my surgeon the other day and he was happy with my clean scan. He said he can do a scrape thing to make my scar look better, but right now I'm content. And the best part is he said I can move to seeing him every 6 months instead of every 3 months.

 

[mrsklamc]

WDWdancer,

The one thing I would really encourage you to check into is how many thyroidectomies the surgeon has done and how often there are complications with paras, etc.

The surgery itself is not too bad.

 

[1Grumpy9]

I just got a call from my endo's office and my results are still that my levels are still high, so she wants to lower my meds again. This is a good thing because I was getting at the top end of the meds. Now I am going to a 200mcg a day!! This is the first time since my surgery that I have been that low in mcg. I am really loving this new medicine because it is actually working for me.

 

[Christine]

I just got a call from my endo's office and my results are still that my levels are still high, so she wants to lower my meds again. This is a good thing because I was getting at the top end of the meds. Now I am going to a 200mcg a day!! This is the first time since my surgery that I have been that low in mcg. I am really loving this new medicine because it is actually working for me.

You're on the Tirosint, correct?

So are you saying that when you took Synthroid (or whatever brand you were taking) that it wasn't working at all for you? I guess I'm a little confused because you are now lowering your dosage. That *sounds* like the other meds were working before but, oh well, as I said, I'm confused!

 

[luvmarypoppins]

Morning Everybody,

Well yesterday was an interesting day. I went to see a new endocrinologist who was recommended to me by my neurologist as I still have been feeling horrid but my current endo doesn't want to change my meds since the numbers are good. The reviews I had read on-liine of this new endo were horriable but surprise surprise my husband and I really liked her. She explained things very direct, but actually listened to me and my story.

I have an official diagnosis of hashimotos now and am scheduled for a total thyroidectomy in September (go on August 30th for my pre-op). I am 25 and nervous for the thyroidectomy but I have a mass on the right lobe that has been growing and new nodules on the left lobe. It is a relief to finally have a name and plan but now I am worrying about what taking the thyroid out will do.

Thanks everyone I hope you're all feeling better

Glad you liked your new endo. I think that is very important to have a good relationship with them, that they will listen to you and you will feel comfortable with them etc.

I am sure you are anxious abut the surgery. I too will agree with the eating and swallowing issues post op. I tried to eat lettuce/salad. Thought I was going to choke to death, right in the hospital! Lesson learned, stick with the very soft stuff, like mac and cheese, applesauce, maybe pasta, meatloaf, mashed potatoes etc and then keep working your way up. I also still have problems with certain breads and french fries.

Also if you have any hoarseness etc. some lifesavers, jolly ranchers, any other type of hard candy might help.

I felt much better keeping my head very elevated at first and only wanted to wear shirts that were no where near my neck etc. (more lower cut).

Wishing you all the best.