The THYROID Thread

[mrsklamc]

I commented about the LID on Masterchef's facebook page, if anyone wants to go 'like' it...Probably won't work but you never know.

 

[luvmarypoppins]

I commented about the LID on Masterchef's facebook page, if anyone wants to go 'like' it...Probably won't work but you never know.

That sounds cool. I am not on facebook maybe I should be?? My ds have told me not to as a certain group of girls from my church are cliquey and dont invite me to any of their "gatherings". So the ds said, mom just stay off facebook because what you see will probably upset you etc. I also do have a problem with everyone else knowing my personal business etc. so it might not be good for me etc.

Did anyone see the little blub on the Insider last night about Sophia Braga (sp?) from Modern Family fighting the "deadly" disease. It said, Sophia stated they cut my neck and now I am in remission.. Wow what a great bunch of info that was. Well Micayla, as you said before, any press is good. etc. They did say there will be an article in this weeks Parade magazine, so heads up. I will read it if its in my paper.

Oh and Micayla you are one of the lucky ones getting the thyrogen because I saw again on the thy ca website someone else was told no thyrogen for her, just cytomel because of the shortage etc. They couldnt get it for some lady etc.

 

[mrsklamc]

That sounds cool. I am not on facebook maybe I should be?? My ds have told me not to as a certain group of girls from my church are cliquey and dont invite me to any of their "gatherings". So the ds said, mom just stay off facebook because what you see will probably upset you etc. I also do have a problem with everyone else knowing my personal business etc. so it might not be good for me etc.

Did anyone see the little blub on the Insider last night about Sophia Braga (sp?) from Modern Family fighting the "deadly" disease. It said, Sophia stated they cut my neck and now I am in remission.. Wow what a great bunch of info that was. Well Micayla, as you said before, any press is good. etc. They did say there will be an article in this weeks Parade magazine, so heads up. I will read it if its in my paper.

Oh and Micayla you are one of the lucky ones getting the thyrogen because I saw again on the thy ca website someone else was told no thyrogen for her, just cytomel because of the shortage etc. They couldnt get it for some lady etc.

LMP-
Thanks for the info on the thyrogen.

Facebook has it's pros and cons- I resisted for a long time too. It's nice for keeping in touch with extended family though. Is it possible the ladies just don't think to tell you and you don't know because you aren't on facebook?

 

[mrsklamc]

They deleted my post! Oh well- looks like they don't leave any comments but their own on their page.

 

[luvmarypoppins]

So for those who have had their synthroid reduced, I am thinking of you Micayla, and anyone else.

Did you notice things like:
Having More Energy
Less Forgetfulness
Feeling more hot than the usual feeling more cold?
Less Bone pain?

I know its strange, but its only been a couple days. The only thing that is still bad is the sleeping, but I think that is just due to my normal neck dissection pain/scar tissue stuff.

Could this stuff happen so fast? Or am I imagining things??

 

[mrsklamc]

I just talked it over with DH. I think it's pretty different for everyone but I think the big difference when I went from hyper to less hyper is less crankiness & better sleep. I personally was not cold- have always had less tolerance for heat since this whole thing started-- other than my feet which are almost always cold.

I almost think I'm a little hypo now. We're going to do a TSH whenever we start my testing. I was hoping she'd get back to me with dates this week since they called about the thyrogen but no such luck.\

ETA: I have never had bone pain. My calcium levels have always been good but I try to eat extra dairy because there's a correlation between synthroid use and osteoporosis.

 

[mrsklamc]

On another note, I think I'm going to start a co q 10 supplement. It's pretty expensive but supposedly good for gums, which I've had some trouble with since the 2nd radiation dose. Thought I'd throw that out there and see if anyone else has tried it, or wants to.

 

[Christine]

So for those who have had their synthroid reduced, I am thinking of you Micayla, and anyone else.

Did you notice things like:
Having More Energy
Less Forgetfulness
Feeling more hot than the usual feeling more cold?
Less Bone pain?

I know its strange, but its only been a couple days. The only thing that is still bad is the sleeping, but I think that is just due to my normal neck dissection pain/scar tissue stuff.

Could this stuff happen so fast? Or am I imagining things??

No, it can happen quickly. Although I would think you should feel less hot. I don't have bone pain so that I can't comment on.

I would mainly feel less irritable. I would imagine your energy would increase because you're not so ramped up; however, I've never had much energy all my life so I wouldn't know!

 

[dischick4778]

I've only been on the lower dosage for around a week. Haven't noticed anything different yet. I keep waiting to feel less anxious and less stressed but it hasn't happened yet. I'm still getting leg and foot cramps but I have a major calcium issue as you know. I never noticed feeling overly tired, but I chase after an 18 month old so I figure being tired is part of life. Hoping to see some positive changes soon. Glad to hear you are noticing some differences!

 

[luvmarypoppins]

I've only been on the lower dosage for around a week. Haven't noticed anything different yet. I keep waiting to feel less anxious and less stressed but it hasn't happened yet. I'm still getting leg and foot cramps but I have a major calcium issue as you know. I never noticed feeling overly tired, but I chase after an 18 month old so I figure being tired is part of life. Hoping to see some positive changes soon. Glad to hear you are noticing some differences!

What was your reduced to? Mine was 200 and now they are trying 175. Also did your endo tell you what tsh she wants you at? Asking as Christine also says she cant believe that mine said a 2 or 3 is ok. Maybe mine means a 0.2 or 0.3? I am not throwing out the rest of my 200 yet, just in case.

 

[luvmarypoppins]

On another note, I think I'm going to start a co q 10 supplement. It's pretty expensive but supposedly good for gums, which I've had some trouble with since the 2nd radiation dose. Thought I'd throw that out there and see if anyone else has tried it, or wants to.

My dentist said I should rinse with ACT alot which I do. This past visit he did have to do alot of cleaning and I didnt have any cavities so that is good for me. I do the restoring one. I alternate from the green and blue bottles for the flavor. I like the green one better though.

 

[mrsklamc]

I know I'm probably paranoid but I NEVER throw out synthroid. When my dose changes I stash it in case there should ever be some kind of natural disaster or disruption to the supply chain.

 

[dischick4778]

What was your reduced to? Mine was 200 and now they are trying 175. Also did your endo tell you what tsh she wants you at? Asking as Christine also says she cant believe that mine said a 2 or 3 is ok. Maybe mine means a 0.2 or 0.3? I am not throwing out the rest of my 200 yet, just in case.

I'm down to 200 from 224 levo. My tsh is 0.05 but my thyroglobulin antibodies are still 672 (down from 3,000 originally). My calcium is still only 8 but she said we will watch it.

mrsklamc - where do you live again? I can't imagine feeling as though I would not get my medications. Living in NYC I guess I don't even think about it. Is there a shortage in the US?

 

[mrsklamc]

mrsklamc - where do you live again? I can't imagine feeling as though I would not get my medications. Living in NYC I guess I don't even think about it. Is there a shortage in the US?

Nope, not at all. I'm paranoid. I just think about it when stuff like the tsunami in Japan happens. It may also be-- did you ever have to do a total withdrawal scan, or just thyrogen? I didn't have thyrogen my first 2 times and you become very very aware of how dependent you are on that pill.

 

[Celidh]

Hi, I just found this thread. I was diagnosed with hypothyroid 5 or 6 years ago. Have been on Synthroid and spent the last year playing with the dosage because my levels were low. At the moment, I take two different dosages 125 one day and 150 the next. 125 was too low and 150 was too high for me. My gp also told me my magnesium was low when I had full blood work done last month. I don't know if they are related.

I don't always feel great and have major mood swings that vary from being angry and anxious to be sad and weepy, but that is most likely related to mild depression. I don't know thought how much if anything my thyroid has to do with that.

I have skipped through this thread and it amazes me how much many of you know about your levels and the numbers. I never have any idea what my levels actually, just that the doctor tells me they are either high, low or fine. I also never ask because my gp always seems to be in such a hurry that I don't feel like asking. I know that is no way to be but..

I do know that I quite often have trouble swallowing things, it's like they get stuck in my throat, even if they are chewed well. Apples are really bad for it. I always make sure I have a drink with me when I am eating. I did mention this to my gp and she sent me for a test where I had to swallow a liquid while they checked out my throat and that came back fine.

The thing that bothers me most about my doctor is that she never asks me how I am when I go in her office. Not how are you, how do you feel, how are things going, nothing other than basically what do you need today. I just don't feel that she is approachable because she is so busy. Getting another doctor is out of the question, there just aren't any to be had for those with no doctor and if you already have one, you would never get in to a doctor even if they were taking patients.

Anyway, I feel lucky that I haven't had to go through as much as some of you have.

 

[luvmarypoppins]

Nope, not at all. I'm paranoid. I just think about it when stuff like the tsunami in Japan happens. It may also be-- did you ever have to do a total withdrawal scan, or just thyrogen? I didn't have thyrogen my first 2 times and you become very very aware of how dependent you are on that pill.

O.K. I didnt count them but its probably around 15 so I guess I will take your advice and save them for a rainy day

 

[luvmarypoppins]

Well I am happy to report that I went out with dh today in the car and he was so amazed that I was not screaming my head off and hyper ventilating at his driving habits

And ds20 was driving me so crazy. I told him, why dont you go out and play with your friends. Normally I would have been flying off the handle etc. But nope, not anymore.

Can I just say my family is my new synthroid dose.

Now if only the blood tests will be ok.

Good bye for now high synthroid dose, I knew you well!!

 

[luvmarypoppins]

Celidh - welcome!! I am sure it is frustrating when you dont feel you are getting the kind of care you need from your doctor. I guess the general practiconer is your only option instead of an endocronogist.

I would ask all the questions you want, its your health and your body. You should also ask for copies of your lab reports if they are not willing to go over them with you. That way you can always have a reference for each visit.

I felt like you did when I had the higher dose, but now I am feeling much better. I didnt have the depresssion though.

I too had such a hard time swallowing things such as you do. I cant eat bread or french fries that much. Always have to have the liquids nearby too. But mine was a result of all the thy ca surgery etc.

I didnt have that particular swallowing test, but my ent surgeon has scoped me alot with the laryngoscope (sp?) and saw lots of what was going on from the throat down to the esophagus.

Will your dr. consider any other kind of tests to check on your swallowing issues?

Hang in there. I am sure things get difficult at times. You will always be your best advocate.

 

[son3disfan]

Celidh - welcome!! I am sure it is frustrating when you dont feel you are getting the kind of care you need from your doctor. I guess the general practiconer is your only option instead of an endocronogist.

I would ask all the questions you want, its your health and your body. You should also ask for copies of your lab reports if they are not willing to go over them with you. That way you can always have a reference for each visit.

I felt like you did when I had the higher dose, but now I am feeling much better. I didnt have the depresssion though.

I too had such a hard time swallowing things such as you do. I cant eat bread or french fries that much. Always have to have the liquids nearby too. But mine was a result of all the thy ca surgery etc.

I didnt have that particular swallowing test, but my ent surgeon has scoped me alot with the laryngoscope (sp?) and saw lots of what was going on from the throat down to the esophagus.

Will your dr. consider any other kind of tests to check on your swallowing issues?

Hang in there. I am sure things get difficult at times. You will always be your best advocate.

I am working my way through this thread.
What wonderful useful information from all your stories.

I am a Hodgkins lymphoma survivour ( 18 years now)
And have been treated With synthyroid for with hypothyroidism for the last 8 years.
I take 1.25, ( started at. .75 ) and have been worried about the lack of info from my doctor about my levels......
This thread has made me make an apt. And follow up this week.
There seems to be lot more side effects that I wasn't aware of That I have been experiencing lately (mood swings, bone pain). I didn't make the connection to my thyroid but just thought it was aging.

Anyone else have chronic sinus issues?
I am recovering right now from my third very aggressive sinus surgery in the last 5 years.
I have mast tubes in my nose to carry the antibiotics and steroids right into the sinus.
I have so many different doctors, I think they forget about the thyroid when they are medicating and operating, and I wonder if there is any connection...
Sinuses and thyroid....
Fighting infections and immunity...

Anyway, thank you for all the info on here.

 

[mrsklamc]

Welcome!

CelidH, don't underestimate your thyroid hormone level's ability to depress you!

Mine tends to go - low= depressed; high = crabby. I'm wondering if a dose of 137 would work for you? It would just be so much less complicated than trying to remember which pill to take.