The THYROID Thread

[dischick4778]

Well I scheduled my sono. Its going to be July 9th,

hmm Jenn, same day you are going to WDW. Where are you eating?? Of course I am disney obsessed with the food. I really think a lot of it has gone down in quality and up in price. I guess the only good thing would be if your take your little one to a character meal. Its air conditioned and then you dont have to wait out in the heat to meet those characters etc. We use to always go in August. I am sure the July heat is bad too. One word: Pool!!!

Does anyone else feel like this?? You try to put the cancer in the back of your mind and then when you are making appts, it just puts it right back up there. Like right now I feel like a knot in my stomach. I am gonna have to have some serious prayer time later I think. This is also right after I am teaching vbs, I think I will be exhausted and glad to lay on that table for 30 min.

Still trying to work out something for the F and W. That is not going well. Cant get a decent room or flights etc. I will wait a while longer. Hoping for an ap discount or that we can use some of dh ff miles for a hotel room.

Hope everyone is doing well.

Good luck with your sono! I will be thinking of you and sending you positive thoughts from WDW. We have ressies at Le Cellier, Liberty Tree, Bongos, Tutto Italia, Kat Kora's place, O'Hana, The Wave, and breakfast at Chef Mickeys.

Tomorrow is two years since my surgery, it is a scary feeling still. I remember that day so clearly and never want to go through that again. Just thankful for every good Dr. visit.

 

[luvmarypoppins]

Hi Everyone,

I have been reading your posts/stories on and off over the last several months. I've been recovering from a thyroidectomy due to papillary cancer 10/31/11. It has been a long and difficult road due at least in part to the fact that I was already sick with adrenal exhaustion when they found the cancer. Once I had the thyroid out it made me so much worse b/c the adrenals and thyroid work very closely together. So, long story short, after a long haul of finding the right dr. I have made tremendous progress and my adrenals are in much better shape. But, I am just now on a normal dose of medication (100 mcg) b/c my adrenals were so bad they couldn't handle the meds and I had to get them compounded in order to titrate up very slowly.

Soo, I am really struggling with poor energy, depression, and generally feeling crummy. I am single and self-employed and just not able to go back to work --- but at a very, very slow pace (2hrs./week). I am feeling discouraged because I thought I would feel better by now but seems I am getting more tired. Just had new bloodwork done on Friday and will see my DO this week to get increased to 112mcg. (Still going slowly but not as slow as before!) My last TSH was 15 (about 2 mos. ago at 70mcg). I had free t3 and t4 tested also and can post the numbers and/or the new ones soon.

Anyway, you all seem to be a kind, caring, and knowledgeable group and I am hoping you can give me some input and encouragement. Specifically, is how I'm feeling "normal" for where I am in terms of dosage? Should all of this improve with time, more meds?

I really appreciate your time and feedback.

Thank you,
Jill

Welcome. I dont have any experience with dosing up,just down for me. I am at 150 now and started out at 200.

Have you ever gone to an endocrinologist? I rally wouldnt trust my own gp with my thyroid stuff. He is clueless and was the one who couldnt even figure out I had cancer to begin with especially with all the symptoms I had.

It does take a while to get on the right dose that will make you feel like your new you, so hang in there. Its a process for sure.

 

[luvmarypoppins]

Singing for me actually got better (not a singer, just in church.) I hadn't realized how much it was compressing my airway. (I was 29 and they said I had probably had it for 20 years.)

This is one of the things I am most sad about. Before all of this happened I was about to join the choir. Some people told me what a good voice I had. Well that is no more.

 

[luvmarypoppins]

No, I don't have a gap like that, but I agree with Christine, I don't notice it as looking 'off' in your picture. I, too, should get savvy enough to post a pic.

I dont know how to post a picture. It was actually Tuffcookies (cindys) picture her beau took of us when we ran into each other at the Swan.

The worst thing in my gap which you cant see in the picture is my beating vein/artery or whatever it is. It is really freaky. This is what was left after the lifesaving stuff.

Even my ds say its creepsy, even the one ds who is going to nursing school. I dont know how to describe it. It looks like my neck is beating right under the skin. Really weird. Oh well, it is what it is. I am just thanking God he saved my life (and dh always reminds me how he pushed the bed to the or etc).

 

[Christine]

Hi Everyone,

I have been reading your posts/stories on and off over the last several months. I've been recovering from a thyroidectomy due to papillary cancer 10/31/11. It has been a long and difficult road due at least in part to the fact that I was already sick with adrenal exhaustion when they found the cancer. Once I had the thyroid out it made me so much worse b/c the adrenals and thyroid work very closely together. So, long story short, after a long haul of finding the right dr. I have made tremendous progress and my adrenals are in much better shape. But, I am just now on a normal dose of medication (100 mcg) b/c my adrenals were so bad they couldn't handle the meds and I had to get them compounded in order to titrate up very slowly.

Soo, I am really struggling with poor energy, depression, and generally feeling crummy. I am single and self-employed and just not able to go back to work --- but at a very, very slow pace (2hrs./week). I am feeling discouraged because I thought I would feel better by now but seems I am getting more tired. Just had new bloodwork done on Friday and will see my DO this week to get increased to 112mcg. (Still going slowly but not as slow as before!) My last TSH was 15 (about 2 mos. ago at 70mcg). I had free t3 and t4 tested also and can post the numbers and/or the new ones soon.

Anyway, you all seem to be a kind, caring, and knowledgeable group and I am hoping you can give me some input and encouragement. Specifically, is how I'm feeling "normal" for where I am in terms of dosage? Should all of this improve with time, more meds?

I really appreciate your time and feedback.

Thank you,
Jill

I'm not sure I can comment on the adrenal issues. I have heard of adrenal fatigue; however, monitoring that is not something most mainstream doctors (endocrinologists or GPs) even bother with.

As for your thyroid. Your TSH is too high. At 15, no wonder you are tired. Is there a specific reason that your doctor is going so slowly with getting you to a proper TSH range? Your surgery was roughly 9 months ago. I would think that, at this point, your TSH should have been stabilized down to the "close to zero" mark. As a newly diagnosed, thyroid cancer patient, this is the time for TSH suppression and you need to work on that. I think once you get your TSH into an optimal range, only then will you *start* to feel better.

Have you had any radioactive iodine treatments since your surgery?

 

[SingingMom]

This is one of the things I am most sad about. Before all of this happened I was about to join the choir. Some people told me what a good voice I had. Well that is no more.

It was a very strange time for me - my husband's office was closing, he had to find a new job, we hadn't had children yet (one miscarriage) and now I had a cancer diagnosis.... And the only thing I was worrying about was if I'd be able to sing again!

But, as I am a leader of song in church, I prayed that He would spare those vocal chords so that I could continue to praise Him in song. And, my prayers were answered Good luck to all of you.

 

[jepressley]

Thank you Luv Mary Poppins & Christine.

I have been to 2 endocrinologists neither of which were helpful at all. First of all, they don't believe in adrenal exhaustion which is pretty ignorant. In any case, I've been thru about 12 practitioners to get help and finally settled on a ND (naturopath) and DO. They are fine working in conjunction in order to help me. And, they are fine with my health and feeling good being the priority above all else. Oh, and they are very knowledge about thyroid stuff.

Actually, I wasn't needing any input on the adrenal stuff, have that covered. Just mentioned it to give big picture background and why mine hasn't just been a more straightforward case of thyroid cancer. The adrenal problems are the reason I have had to go so slow building up my thyroid meds. If someone with a thyroid had adrenal problems they would always be treated first then deal with the thyroid -- but, of course, that's not an option without a thyroid. I had terrible hypoglycemia b/c of adrenal problems and when I started on thyroid meds it made me much worse b/c my adrenals couldn't handle the increase in metabolic energy. (Btw, all inserts of thyroid meds say they are contraindicated in people with adrenal insufficiency.) So, we had to see saw back and forth to support my adrenals, increase thyroid meds, support adrenals, increase thyroid, and so forth.

Sooo, sorry for the longwindedness -- it's been a nightmare, I was just hoping for thoughts about how I'm feeling and what to expect as I increase my meds. My TSH was at 15 a few months ago when I was at 70mcg but now I'm at 100mcg and have been for 31days. Just had new bloodwork and should have results by Wed. Guessing the TSH is better but still have a ways to go. Luckily, I can go somewhat faster with my med increases now but my doctors (and I) do want to go slow rather than me ended up hyper which would be hard on my adrenals. Hope that makes for a clearer picture.

Mainly, I'm just wondering why I'm not feeling better. Seemingly, I should be getting closer to an optimal dose if nothing else... wouldn't that mean feeling better? Instead I seem to be feeling even more fatigued.

Oh, and I did not have RAI and do not plan to. I have read about the side effects and that it is overused along with causing increased risk of secondary cancers. My cancer was stage 1 papillary with no spreading or lymph node involvement. I wish I would have just left it alone. I think that's the best course of action with papillary and have read some things recently supporting that view -- that the diagnosis & subsequent removal of the thyroid does nothing more than make people hypothyroid (and all that entails) and dependent on thyroid meds when they could have just taken a watchful waiting approach.

I certainly mean no judgment for anyone else's approach/perspective, that just my opinion given the research I've done. Everyone has to do what feels best to them. For me, I wish I'd just let it be.

Thanks again for your thoughts,
Jill

 

[mrsklamc]

Jill,

You must be in absolute misery! Unfortunately closer to right doesn't necessarily mean feeling better. There's a pretty small range w/ thyroid stuff to not be straight up miserable.

 

[luvmarypoppins]

Jill

I understand some of the stuff you are staying about the adrenals, especially taking care of them before the thyroid.

I know they thought I had an adrenal tumor at first and cancelled my thy ca surgery to address it. Had to have lots of testing for that. They said the adrenal tumor can hide and not even show up on tests. So I had to have ct tests, urine stuff and some $800 blood pressure med for a month.

They said if the tumor was there and I had anesthesia then I would have a stroke and die on the operating table during the thy ca surgery.

I know you have to choose what you feel is best for you treatment wise.

Yes I was told I have a higher chance of getting a secondary cancer. Most likely leukemia I think.

Have you been on the thyca.org website. Someone there might have more insight into the adrenal stuff.

I know there is a poster from the breast cancer boards, Really she is a young girl who had a pituitary tumor. She finally found someone I think in Utah who operated on her because she wanted both her adrenals removed to address all the other problems she was having. She is the most knowledgeable about that, but I dont think she posts too much anymore as her dad has ca too. I know she said she has to keep gatorade with her at all times and tires very easily and cant get too overheated.

Wishing you all the best. Hang in there.

 

[becky_AK]

Good morning,
I'd like to introduce myself and subscribe to this thread. I am 31 and just found out I have hypothyroid. My dr. prescribed medication and I am hoping this will help with the extreme fatigue I have had recently. I honestly thought a big part of my fatigue was due to working full-time, having a 4 month old & 5 yo, and just being very busy in general. This is all new to me but I am doing research on diet and ways to help with thyroid problems. I am glad to see that I am not alone.

-Becky

 

[jepressley]

Thanks for your input Luv Mary Poppins. You have had a really hard road yourself (to say the least!) and I wish all the best for you too.

And, thank you too, Mrsklamc -- didn't you have a really hard time getting your meds regulated? Or, am I mixing you up with someone? I have my new bloodwork results from a few days ago. My TSH is now 5.4. My dr. is increasing me from 100 to 112mcg. I actually do feel a little better today than I have in a while. So, from your perspective, how I'm feeling is related to the TSH being too high. And, the feeling better then worse again is the norm on the way to med optimization?

Anyone else have thoughts on getting meds regulated? Especially if you had a hard time and are doing better now!! It really helps to get input from people who have reached the other side, so to speak.

Christine, you said it took you "years" to feel "right"... could you elaborate. Eek, that's a scary thought.

Thanks again, everyone!

Jill

 

[Christine]

Christine, you said it took you "years" to feel "right"... could you elaborate. Eek, that's a scary thought.

Thanks again, everyone!

Jill

Well, when this all happened, I was 31 years old with a 4 year old and a 8 month old baby. I had to have two surgeries, and I spent from 1995 to 1997 have RAI treatments to get rid of my VERY small papillary cancer. The RAI treatments and the subsequent up and down of being on and off meds (no thyrogen treatment back then) really took my body through the a war! Then in 1998, probably from being very hypo and having a suppressed immune system, I contracted giardia. I lost 25 lbs in 2 months and had to quit working because no doctor could figure out what was wrong. Once i was treated, it took a long time for my stomach and intestines to repair. It was probably the early 2000s, after one or two clean scans and no health issues that I started to feel myself. The only good part is by that time, we knew what dose was *my* dose so I ended up getting my meds regulated pretty quickly after the initial diagnosis back in 1995.

Since you haven't had RAI and all the resulting ups and downs, I don't think you'll have this problem. You may not feel yourself until your TSH has been at least a 2.0 for a good 6 months. It doesn't happen the day you hit the magic number. The body has to repair itself from the damage of being hypothyroid.

 

[jepressley]

Thanks, Christine.

 

[Mariep26]

Hi
I haven't gotten all the way through the thread but I intend to tonight. I was very happy to see a thread dedicated to thyroid!

Thyroid issues run all over my family. My mom and my grandmother on both sides have/had thyroid issues (hypo) so I always knew thyroid issues were in my future. I have been monitored for thyroid issues since my teens and nothing significant arose until my second pregnancy. My OB felt that my thyroid was enlarged and my blood work was off so she sent me back to my endo for monitoring. My son was under 1 year old at this point so they did not know if I had pregnancy induced hyperthyroid or post partum hyper (since that often kicks in 6 months post partum) or maybe Graves. At 32 weeks I started to have preterm labor and was on bed rest for 5 weeks. After coming off bed rest my daughter, Presley, was born at 38 weeks 5 days.
After having my daughter I was monitored for months and eventually was diagnosed officially with Graves disease. I have been on methimizole since my diagnosis and am currently on the lowest dosage I have ever been on (5mg 1x per day). That is the good news. The bad news is that we decided late last year that we wanted to grow our family. I got pregnant in October and had a miscarriage at 7weeks 1 day. We waited a bit and got pregnant again in April but that pregnancy also ended at 7 weeks 1 day.
Currently we are waiting to try again until September and my endo plans to proactively switch me to PTU instead of switching me once I get pregnant.
Thanks for letting me share!!

 

[cm8]

This is one of the things I am most sad about. Before all of this happened I was about to join the choir. Some people told me what a good voice I had. Well that is no more.

That happened to me as well

It was a very strange time for me - my husband's office was closing, he had to find a new job, we hadn't had children yet (one miscarriage) and now I had a cancer diagnosis.... And the only thing I was worrying about was if I'd be able to sing again!

But, as I am a leader of song in church, I prayed that He would spare those vocal chords so that I could continue to praise Him in song. And, my prayers were answered Good luck to all of you.

, Praise God!

 

[SingingMom]

That happened to me as well

, Praise God!

Thank you! My prayer is that all of you have similar outcomes. The journey of thyroid disease is very long and hard. It can be discouraging. Try to keep positive. ((hugs))

 

[luvmarypoppins]

Becky - welcome. Hope the meds will help you.

Marie - wishing you all the best

SingingMom - I am glad God let you keep the wonderful gift He has give you with your voice.

Well I am going to get my blood test on Sat. Then the sono on Mon.

Made all my adrs for the next trip. The only one I think I might get rid of is Teppan Edo, been reading some bad reviews on the boards.

Blessings to you all

 

[Mariep26]

Becky - welcome. Hope the meds will help you.

Marie - wishing you all the best

SingingMom - I am glad God let you keep the wonderful gift He has give you with your voice.

Well I am going to get my blood test on Sat. Then the sono on Mon.

Made all my adrs for the next trip. The only one I think I might get rid of is Teppan Edo, been reading some bad reviews on the boards.

Blessings to you all

Thanks for the well wishes!! On the subject of Teppan Edo -- I have it booked for the CP in December. I heard that the complaints being too small of portion and not being "Americanized" Japanese (i.e. No fried rice). I am also on the fence but need to act fast if i want a CP ADR!

 

[dischick4778]

Well I am going to get my blood test on Sat. Then the sono on Mon.

Made all my adrs for the next trip. The only one I think I might get rid of is Teppan Edo, been reading some bad reviews on the boards.

Blessings to you all

Good luck tomorrow and Monday! We are all packed and off to AKV Monday morning. I will be thinking of you!

 

[luvmarypoppins]

Went for my sono yesterday. I had my usual girl and surprisingly she was so pleasant and nice this time.

She said that everything looks good after she took my pictures to the radiologist.

So since I didnt need any more views I am assuming all is well. But of course we have to look at the blood test numbers etc.

I am so exhausted teaching bible school. We have 15 kids and my helper is such a super lady. She does everything to help me that I cant do physically. She is a blessing for sure. I am getting to know her more. Amazing how you see someone briefly on a sunday and dont get to know them too much etc.

Endo on Monday.