Thyroid problem -- a question

[Marseeya]

TSH 67 huh? Wow, you really were very hypo weren't you! 25 is definitely too high. Get right back to your doctor about it Marseeya, that's not right! It does take a few months for thyroid function tests to change, but you will undoubtedly need your thyroxine dose altered, and TFTs rechecked.

Excuse me while I ramble.

What's weird about this is, back when I was really sick with it, with the TSH of 67, I spent a lot of time complaining to several different people about the symptoms rather than telling them all to my doctor who might have been able to put them together a lot more quickly. I went to a shrink for depression and "brain fog" issues. Complained to a gynecologist about period problems and lower whoopie drive. Talked to my hair stylist because I was losing hair so fast. Spoke with a pharmacist because of my dry skin -- just a totally random thing and she told me what lotion she preferred. I only talked to my doctor about fatigue. DUH. It wasn't until I went to get a pap smear and a nurse practitioner noticed a fast weight gain and made me take a blood test.

After that I really pushed other people to get their thyroid tested when they showed symptoms and I knew what all the symptoms were. Yet here I was again, having all the same symptoms since mid summer or so, and I didn't put it all together!

Something that used to bug me was people like Dr. Phil would would get on television and complain about overweight people using their thyroid as an excuse for being fat, and that if you're fat, it's probably not your thyroid. Back in 2000 that really prevented me from putting it all together. I would just think to myself that I was fat because I didn't exercise and didn't want to exercise because I was fat.

I just hope others don't listen to people like Dr. Phil and not get tested as a result.

 

[#1MMFan]

Yeah, that's interesting Marseeya. I get a lot of folks saying they are tired all the time, and of course you go through the relevant questions. A lot of the time we will elect to do bloods, and Thyroid function is a definite routine blood test to do.. doesn't make sense not to!! Ah well, at least you got diagnosed... eventually!

 

[zippeedee]

I'm on medical leave now after having radioactive iodine treatment last week. My thyroid was removed in August due to cancer.
The weird thing was my blood levels were all fine. I'd been complaining of fatigue, etc and nothing was done until I developed a kidney stone and the ER docs found that I was so anemic they admitted me and gave me two blood transfusions.
The next year my nurse practitioner couldn't feel my thyroid at my physical and sent me for an ultrasound where they saw the nodules that turned out to be cancer. All along the process doctors kept saying how "overcautious" she was for ordering the test, and that less than 1% are anything to worry about. I never knew what a thyroid even did until I didn't have one and got hit with all the misery of being hypo (I'm still there now!)
Now I tell everyone to make sure they get a "neck check" when they see their doctor. Thyroid cancer has one of the fastest growing incidence rates. It's generally very curable, but still not fun.

 

[Christine]

I'm on medical leave now after having radioactive iodine treatment last week. My thyroid was removed in August due to cancer.
The weird thing was my blood levels were all fine. I'd been complaining of fatigue, etc and nothing was done until I developed a kidney stone and the ER docs found that I was so anemic they admitted me and gave me two blood transfusions.
The next year my nurse practitioner couldn't feel my thyroid at my physical and sent me for an ultrasound where they saw the nodules that turned out to be cancer. All along the process doctors kept saying how "overcautious" she was for ordering the test, and that less than 1% are anything to worry about. I never knew what a thyroid even did until I didn't have one and got hit with all the misery of being hypo (I'm still there now!)
Now I tell everyone to make sure they get a "neck check" when they see their doctor. Thyroid cancer has one of the fastest growing incidence rates. It's generally very curable, but still not fun.

I hear you! Mine thyroid cancer happened 10 years ago. My blood levels were fine too. That's the funny thing with thyroid cancer--usually the gland is behaving itself.

Good luck in your treatments. I don't have to do the "hypo" thing anymore--I get to use the synthetic Thyrogen now and life is good. (sometimes).

 

[zippeedee]

Thanks, Christine. I did all the wheedling and cajolling I could to try to use thyrogen this time, but no go.
Maybe for my 1 year follow up. At least the low iodine diet wasn't too bad!
Patti

 

[Mackey Mouse]

I am posting as the Mom of someone who has Papillary carcinoma of the thryoid. I have to say here, you guys are great and giving good advice to the OP...

Zippeedee, I hope you get to use thryogen way of scanning.. it is so much easier than having to go off your thyroid hormone for such a long period of time..

My daughter is clean of thyroid cancer for 7 years, but every year she treks it in for her scan and will be dealing with doctors for the rest of her life.. She is very brave and handles it like a trooper.

Hugs to you all from a Mom who understands how difficult it is to live with thryoid issues....

 

[Marseeya]

I'm on medical leave now after having radioactive iodine treatment last week. My thyroid was removed in August due to cancer.
The weird thing was my blood levels were all fine. I'd been complaining of fatigue, etc and nothing was done until I developed a kidney stone and the ER docs found that I was so anemic they admitted me and gave me two blood transfusions.
The next year my nurse practitioner couldn't feel my thyroid at my physical and sent me for an ultrasound where they saw the nodules that turned out to be cancer. All along the process doctors kept saying how "overcautious" she was for ordering the test, and that less than 1% are anything to worry about. I never knew what a thyroid even did until I didn't have one and got hit with all the misery of being hypo (I'm still there now!)
Now I tell everyone to make sure they get a "neck check" when they see their doctor. Thyroid cancer has one of the fastest growing incidence rates. It's generally very curable, but still not fun.

Oh my, I bet you were grateful to the nurse practitioner. I still thank mine for figuring it out for me.

I hope you get better soon. It does take a very long time for hypo to level itself out. Just take good care of yourself.

 

[Marseeya]

I hear you! Mine thyroid cancer happened 10 years ago. My blood levels were fine too. That's the funny thing with thyroid cancer--usually the gland is behaving itself.

Good luck in your treatments. I don't have to do the "hypo" thing anymore--I get to use the synthetic Thyrogen now and life is good. (sometimes).

What's Thyrogen?

 

[Christine]

What's Thyrogen?

Marseeya--it only applies to thyroid cancer patients. It used to be when you had a follow up for your thyroid cancer (to make sure it was still "gone") you had to go off your Synthroid for 6 weeks. The goal was to get TSH as high as possible (mine always went to about 135). This makes any remaining thyroid cells (including thyroid cancer cells) absolutely STARVED for iodine. They would then give you radioactive iodine and scan you. If you "glowed" during the scan, it meant you still had thyroid cells in your neck or recurrent thyroid cancer. But, by that time, you didn't care because by the time you got your results you were probably half dead with a TSH of 200 by that point!

Anyway, they "invented" synthetic recombinant TSH (brand name Thyrogen). Now, rather than go off your medication, you get two shots of this stuff and it makes your TSH go really high for about a day or two. During the time the TSH is high, they give you the radioactive iodine and then scan you. The whole process takes about a week, rather than the old 6-week regimen.

Of course, newly diagnosed thyroid cancer patients usually don't use Thyrogen for their first 1-2 scans as it still has not been proven to be as accurate as the "old way." But once you are determined to be at a lower risk, you start using the Thyrogen.

So, aren't you glad you asked? Now you are a thyroid cancer expert!

 

[Marseeya]

Marseeya--it only applies to thyroid cancer patients. It used to be when you had a follow up for your thyroid cancer (to make sure it was still "gone") you had to go off your Synthroid for 6 weeks. The goal was to get TSH as high as possible (mine always went to about 135). This makes any remaining thyroid cells (including thyroid cancer cells) absolutely STARVED for iodine. They would then give you radioactive iodine and scan you. If you "glowed" during the scan, it meant you still had thyroid cells in your neck or recurrent thyroid cancer. But, by that time, you didn't care because by the time you got your results you were probably half dead with a TSH of 200 by that point!

Anyway, they "invented" synthetic recombinant TSH (brand name Thyrogen). Now, rather than go off your medication, you get two shots of this stuff and it makes your TSH go really high for about a day or two. During the time the TSH is high, they give you the radioactive iodine and then scan you. The whole process takes about a week, rather than the old 6-week regimen.

Of course, newly diagnosed thyroid cancer patients usually don't use Thyrogen for their first 1-2 scans as it still has not been proven to be as accurate as the "old way." But once you are determined to be at a lower risk, you start using the Thyrogen.

So, aren't you glad you asked? Now you are a thyroid cancer expert!

Actually I am glad I asked! That's really interesting. How did you even function during that time period? And how long did it take for you to bounce back? I can't even imagine. I bet it would be a matter of years before you'd feel "normal" again, wouldn't it?

I can't fathom a TSH of 135. I was practically comatose when mine was in the 60s -- I was sleeping up to 20 hours a day, and just waking up enough to take care of the kids, get them off to school and go back to bed until they came home again. I barely remember that time period.

 

[Christine]

Actually I am glad I asked! That's really interesting. How did you even function during that time period? And how long did it take for you to bounce back? I can't even imagine. I bet it would be a matter of years before you'd feel "normal" again, wouldn't it?

I can't fathom a TSH of 135. I was practically comatose when mine was in the 60s -- I was sleeping up to 20 hours a day, and just waking up enough to take care of the kids, get them off to school and go back to bed until they came home again. I barely remember that time period.

Well, the first time I "went hypo" I was only 31 and I guess youth and some thyroid cells left after surgery were in my favor. I worked right up until my iodine treatment day. I sort of fell apart after that. It did take me a good 6 months to feel normal.

The other two times I went hypo, I went out on disability. It was really awful. After the last time, my immune systems was so bad that I ended up contracting giardia and not being able to get rid of it on my own (which is normal). I was then left with acid reflux. I do blame the hypo state for that, although I can't prove it.

Oh, and I don't think I've ever felt totally back to my old self since having my thyroid gland removed.