The THYROID Thread

[Christine]

Oh I hear you on the feeling cold. It seems to bother me more at night than at any other time. I even get the shakes at times! I hope they get you on the right track again soon!

My thyroid levels are fine and I *still* get so cold in my house. I, too, can get the shakes. I find what really helps with that is a scalding, hot bath! FWIW, my friend (who has no thyroid issues) gets REALLY cold also and just can't get warm. Sometimes I think it just might be a "woman" thing too.

 

[Fan2CSkr]

My thyroid levels are fine and I *still* get so cold in my house. I, too, can get the shakes. I find what really helps with that is a scalding, hot bath! FWIW, my friend (who has no thyroid issues) gets REALLY cold also and just can't get warm. Sometimes I think it just might be a "woman" thing too.

Me too! Lately I feel like no matter what I do I cant get warm. Before my TT I never even wore a coat! Now...

 

[VanessasMom]

Hello fellow thyroid survivors! I am a thyroid cancer survivor of 10 1/2 years. I was diagnosed at 24 years old and had a complete thyroidectomy including removal of 2 parathyroid nodes and transplantation of the other 2. I also had tissue scraped out of my chest and lymph nodes removed. I am on levoxyl .112 right now. I have been having a lot of problems lately.

Starting in July, I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out. This lasts from 30 seconds to 5 minutes. I finally went to the hospital in December a week before Christmas. They ran all the tests on my thyroid, other blood tests, and an EKG. Everything came back normal. They said my thyroid levels were on the high end of normal.

I called my endo and he took me off my meds completely for 4 days. Then lowered me from .125 to .100. After 4 weeks, I was retested and my levels were too low. So, 3.5 weeks ago he raised my meds to .112. I am going for blood work this week again.

I also went to see my cardiologist last month when I started getting the episodes again. He seemed puzzled by it all. He took an echo and EKG. Then, he set me up with a 24hr heart rate monitor for 30 days. It hasn't happened again since them (figures!). Just to be safe, I also have an appt with my neurologist after sorting things out with the cardio. Am I crazy? Is all this because of my meds? I figure it never hurts to be safe. Anyone have similar problems like this?

It's really freaking me out because I have a 2 year old that I stay at home with and no family close by. So, basically if something happens to me during the day no one will know until my dh gets home at 6:00 from work. I have been practicing dialing 911 with my dd, but I'm not sure she totally understands. We will keep at it until she does. I'm worried more about her if something happens to me. (sorry this is soooooo long!)

 

[Christine]

Wow, sorry to hear that you are having such a rough time with this.

Do you know what your TSH levels were when you were having the problems. Many people, including myself, are very sensitive to the suppressive levels of thyroid hormone that thyroid cancer patients must endure. I have had my share of heart issues but predominantly I have a rapid pulse most of the time. I've done the cardiologist stuff too and everything is normal.

I think it is very telling that all of this stuff has stopped since you have adjusted your meds. So hopefully, this will be it. If not, you KNOW your heart is okay anyway (even if it flip-flops and races). You may, eventually, need to go on a beta-blocker medication (like Inderal) to keep your heart rate at a slower, steady rate. Many thyroid cancer patients on suppressive therapy end up using this stuff.

 

[Fan2CSkr]

Hello fellow thyroid survivors! I am a thyroid cancer survivor of 10 1/2 years. I was diagnosed at 24 years old and had a complete thyroidectomy including removal of 2 parathyroid nodes and transplantation of the other 2. I also had tissue scraped out of my chest and lymph nodes removed. I am on levoxyl .112 right now. I have been having a lot of problems lately.

Starting in July, I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out. This lasts from 30 seconds to 5 minutes. I finally went to the hospital in December a week before Christmas. They ran all the tests on my thyroid, other blood tests, and an EKG. Everything came back normal. They said my thyroid levels were on the high end of normal.

I called my endo and he took me off my meds completely for 4 days. Then lowered me from .125 to .100. After 4 weeks, I was retested and my levels were too low. So, 3.5 weeks ago he raised my meds to .112. I am going for blood work this week again.

I also went to see my cardiologist last month when I started getting the episodes again. He seemed puzzled by it all. He took an echo and EKG. Then, he set me up with a 24hr heart rate monitor for 30 days. It hasn't happened again since them (figures!). Just to be safe, I also have an appt with my neurologist after sorting things out with the cardio. Am I crazy? Is all this because of my meds? I figure it never hurts to be safe. Anyone have similar problems like this?

It's really freaking me out because I have a 2 year old that I stay at home with and no family close by. So, basically if something happens to me during the day no one will know until my dh gets home at 6:00 from work. I have been practicing dialing 911 with my dd, but I'm not sure she totally understands. We will keep at it until she does. I'm worried more about her if something happens to me. (sorry this is soooooo long!)

Hello and welcome! Thyroid issues sure have their ups and downs! I hope you can get to the bottom of yours.

"I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out."
This sounds like a classic panic/anxiety attack. When an imbalance occurs with our thyroid hormone levels every metabolic process in our body is affected. The upside of this for you is that your heart has been cleared as being the culprit.

Weight gain, pregnancy, estrogen therapy and starting a new medicine, (affecting absorption) as well as an illness can all be a reason for adjustment to your thyroid hormone replacement dose. Sometimes, there can be changes in dose requirements for no apparent reason.

I feel that the more anxious you are over this the more intensified things become. I would definitely discuss the possibility that you experienced an anxiety attack and question methods that can help you relax.

More than likely once you again attain your correct balance these symptoms will subside. Let us know how you make out and I'll be thinking about you!

 

[bnhasak]

Vanessasmom, you sound exactly like me right now.

I was/am exhausted. Had MASSIVE hair loss. Resistant to weight loss. All typical hypo symptoms. Was finally after much testing and finding a goiter, they put me on .137 mcg of synthroid. I started to feel better, my hair stopped falling out after about 1-2 months. It was great....until the palpitations started.

Mind you I have a huge history of panic attacks/anxiety, but this was non-stop. I finally called the endo and they took me off meds and wanted my blood work. Apparently I am still very hypo. Now after being off the meds for almost a month I still am having palpitations and feeling like my heart is just not workign right. shaking, or fluttering in my chest.

I went to the cardio two days ago and am having all the same testing. The thing is, I THINK it is more anxiety/stress than anything. I think it is 100% smart to have it investigated by specialists, but at some point we have to learn to deal with our anxiety and realize we are going to be okay, it is just anxiety.

I am having a really hard time doing that. I have a 3 year old and a 20 month old and I feel much like you do. DH is going to find me laying there with the 3 year old crying and the baby mauled by our dog . (or some other gruesome improbably scenario).

I think being a mom is hard and stressful. Especially these early baby/toddler years. Not having any family to help is VERY stressful. Add to that some legitamite but treatable health issues and you have the makings of a VERY stressful situation. I am just coming to terms with that myself. Throw in our normal hormone fluctations, bills, lonliness, crying/screaming kids and that would make anyones heart skip a beat or two.

I am writting this to help myself as much as you. LOL! I honestly have been so preoccupied with my "heart" and health lately that I am not a good mother or wife. I also feel horrible and sluggish. I know I NEED the synthroid and that hopefully my holter monitor and echocardiagram are just going to be proof to my delicate psyche that I am MOSTLY healthy with a treatable nondeadly thyroid disorder.

I am hoping the same for you.

If you ever need to talk, just PM me. Maybe we can be of some support to one another!

 

[ashjohnson80]

I don't think I've ever posted on here before, but I just got some results and I'm very upset.

I was diagnosed with Hashimoto's in 2001. I also had a goiter and had to have the nuclear medicine tests done on it. I was put on synthroid and I kept having my levels tested once a year and taking my medicine until 2005. I let my prescription run out and gained a lot of weight. I got really terrified of going back to the doctor for some reason.

The past two years I have felt horrible and especially the past couple of months; my hair has been falling out, my skin has had dry patchy areas, I've been very very cold especially my hands and feet, and I've been getting extreme headaches.

I had severe anxiety about going to the doctor. Anxiety and depression went along with my thyroid disease to begin with, but I also stopped taking my antidepressants.

Last Friday I got a really bad migraine, and it lasted all weekend, Sunday night it was the worst pain I had ever been in. I was in tears it was hurting so bad. Also my vision never went back to normal. By Tuesday I finally went to the doctor, I would have done anything to stop the pain.

They took some blood to check my tsh and also I got a shot for the pain. As I was leaving the parking lot (I wasn't driving) I passed out and had a seizure in the car. I was rushed back inside the clinic and passed out again on the bed. They ordered me a CT scan, I went to the hosptial and had the CT scan, it was normal. Was told to just take the lortab that was prescribed to me until my lab work came back and they would know how much thyroid medicine to give me.

About 30 mintues ago I got the results of my thyroid test. They said the results were in the normal range. I have no idea how this is possible. I have every sypthom in the world, I have NO energy, these headaches are about to kill me. I have gained so much weight and can't lose any no matter how hard I try, how much I diet or how much I excercise, and my hair is falling out by the handfuls every time I shower.

Can thyroid disease just go away? I'm so confused. I thought it would come back abnormal, they would put me back on synthroid and I would be better again.

 

[Christine]

No, Hashimoto's Disease does not just go away. It is an autoimmune disorder. There are times when your TSH can registers as HYPER and days that it will show you to be HYPO and other times you will be normal. But you are never really normal.

Obviously, you have a great fear of going to the doctor. I am really urging you to make an appointment with an endocrinologist--and one that specializes in thyroid disorders (some are more geared toward diabetes). A general practictioner and/or and emergency room doctor are not equipped to handle Hashimoto's.

I don't mean to scare you but I know someone who had Hashimoto's and she got all screwed up with her medical stuff (she was with Kaiser). She got totally overlooked by the system and she ended up dying as a result of long-term neglect of her thyroid disease. As you get older, it will cause more hardships on your body and more problems. I think you are starting to see this now.

Please call and get an appointment as soon as your can.

 

[bnhasak]

I agree....see an endocrinologist.

I have a WONDERFUL general practitioner and even he missed my goiter and hypo issues. There are very specific tests that can tell you exactly what is going on.

It is not something an ER can treat or diagnose out of hand. They are great for an acute attack of something, but not a chronic disease (which Hashimoto's is).

Good luck to you, and try to be brave. You need to more afraid of NOT going and getting treated than of the doc visit. I know, easier said than done. (I have anxiety/panic disorder as well)

 

[ashjohnson80]

I'm going to call and get an appointment with the endrocrinologist that I used to see in the morning. I haven't been in so long I don't even know if they will still have me on file. How long do they keep patients records does anyone know?

 

[Fan2CSkr]

Do you happen to have the blood results? If not requesting them would be helpful to see what they tested exactly as well as what lab values they are following. Your symptoms are classic hypo.

A Doctor must keep a patients medical records for 7 years. That could vary state to state but that's the norm. Also, depending on the physicians malpractice carrier, requirements can vary.

Please take the advice from the others and make that appointment. You desperately need to be back on thyroid hormone replacement. It is not uncommon to have anxiety when our levels are whacked out. Rationale thinking goes out the window often when in that state. Let us know when your appointment is and keep us updated please. I'll be thinking about you.

 

[claudia]

I participate on a thyroid cancer survivors list and this issue comes up often. One of the moderator/doctors on the list is EXTREMELY vocal about using Armour (he is against it) and feels that any "self-respecting" endocrinologist would not use it. I wish I could find one of his "rants" about it, but I can't. It seems to me that some of his concerns are valid, but I just can't remember them. As it is, I've worked with 3 different endos and NONE of them would touch the stuff.

I have been on Armour for over 2 years now, after going through 2 allergic episodes with both Synthroid and Unithroid (due to the dyes and fillers). All I can say is Thank God for Armour. I actually feel like a normal person again. I love that it is all natural and I am grateful that my endo is a believer. Personally I think it has to do with kickbacks....but that's just my opinion. Christine, I would be grateful if you could give me more info on the moderator/doctor if you can find it.
BTW, I am a follicular cancer survivor.

 

[Mackey Mouse]

Hugs to everyone here...

I agree with Christine, Ash please do get yourself to an accredited endocrinologist, maybe one affiliated with a larger hospital, although that can be a nightmare as well as you are more of a number, but they do see more cases and have more experience than the smaller hospitals...

And to Claudia, congrats on the 3 years, two more for you... and you can relax a bit... hugs.

 

[claudia]

And to Claudia, congrats on the 3 years, two more for you... and you can relax a bit... hugs.

My oncologist said she is going to let me skip this year for treatment (thyrogen shots and scans) since my last 3 were clean. She said she will only do the blood test for the Serum Thyroglobulin and antibodies. If that comes back "normal", I will get to skip this year. While I am excited about the thought of not having to do that lousy low iodine diet, I must admit I am a little nervous about skipping. I think what scares me most about this cancer is that they say it shows up sometimes after 15 years or more. I'm sorry but I don't know your history...was it cancer for you as well?

 

[Christine]

I have been on Armour for over 2 years now, after going through 2 allergic episodes with both Synthroid and Unithroid (due to the dyes and fillers). All I can say is Thank God for Armour. I actually feel like a normal person again. I love that it is all natural and I am grateful that my endo is a believer. Personally I think it has to do with kickbacks....but that's just my opinion. Christine, I would be grateful if you could give me more info on the moderator/doctor if you can find it.
BTW, I am a follicular cancer survivor.

Claudia, I PM'd you.

 

[SillyMe]

Is weight gain/loss always a symptom of thyroid disorders? I've been having problems for a year now. Thought is was reflux. Then was diagnosed with biliary dyskinesia, but the docs are on the fence about having my gallbladder removed. This all started with a lump in the throat feeling last year, then pain by my shoulderblade.

Anyway, I read somewhere on another thread that leg aches is a symptom of thyroid disease. I've been having terrible leg aches for quite awhile. They feel so fatigued, like I'm getting the flu.

I haven't lost weight, nor gained. I was always underweight before having my kids, but am comfortable at the weight I'm at right now. When I do lose weight, I have a really hard time gaining it back. Always have had that problem. Plus I'm always cold. I've been that way my whole life, too.

I'm so tired of feeling like crap all the time. I just wish they'd figure out what the problem is. When I first started having problems last year, my doc ran routine blood tests. Would he have tested for this?

 

[lisajl]

Hey! I just found you people...my people! LOL!!
I am hyperthryoid. Was diagnosed in 2002, been on meds ever since..can't seem to lose weight. But, at least my numbers are within normal range.
My sister can't seem to get hers right.
She is on other meds for HBP and High cholesterol, could that be affecting it?

Lisa

 

[Fan2CSkr]

Hey! I just found you people...my people! LOL!!
I am hyperthryoid. Was diagnosed in 2002, been on meds ever since..can't seem to lose weight. But, at least my numbers are within normal range.
My sister can't seem to get hers right.
She is on other meds for HBP and High cholesterol, could that be affecting it?

Lisa

I was hyperthyroid for years too until recently when I had a TT. At first I lost weight but soon after my appetite was so HUGE that I gained a bit and then once I was regulated with tapazole I gained then gained some more. YUCK! Since the TT a few pounds have come off but I would love to see more! Do you have graves? Your sister is hyper too? Sometimes some of us just cant regulate on antithyroid meds. Me included. Is she on Tapazole or PTU? Has she tried both? Glad you found us!

 

[lisajl]

I was hyperthyroid for years too until recently when I had a TT. At first I lost weight but soon after my appetite was so HUGE that I gained a bit and then once I was regulated with tapazole I gained then gained some more. YUCK! Since the TT a few pounds have come off but I would love to see more! Do you have graves? Your sister is hyper too? Sometimes some of us just cant regulate on antithyroid meds. Me included. Is she on Tapazole or PTU? Has she tried both? Glad you found us!

Oh Geez..it's been a long week...I am HYPOthyroid. Not enough...
Sorry...have been working more hours, son being picked on in school, youngest son, 9 just starting Lacrosse.
Ok...need more thyroid meds! LOL!!

 

[Fan2CSkr]

Oh Geez..it's been a long week...I am HYPOthyroid. Not enough...
Sorry...have been working more hours, son being picked on in school, youngest son, 9 just starting Lacrosse.
Ok...need more thyroid meds! LOL!!

Ahh OK! Scratch my post minus the Tell the bully to lay off your son too! I hate that.