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The Thyroid Thread (Part II)

post #1 of 862
Thread Starter 
A new thread as requested.

Link to The Thyroid Thread (Part I)

Other Helpful Links:
Stop The Thyroid Madness (website)

iTHYROID (website) Link to the post where TanyaLopez discusses the pros and cons of this site.

Armour Thyroid
(medication)


Let's get a list of links/books/etc. going so we can direct newly diagnosed people to some good sources without having to dig through a lengthy thread.
post #2 of 862
subbing
post #3 of 862
Subbing! Thanks Jessica!!!

Has anyone else had any trouble getting their Armour lately? I have, and I usually get it through Walgreens. They told me I would haveto wait over two weeks for my script!: Anyway, I called my doc, who is an hour away, and she siad she doesn't think Walgreens does a good enough job of trying to keep it stocked. So, I am now getting my script from a smaller pharmacy,and it's being mailed to me. How cool is that?

I have some books to recommend, but will have to get back with that later.

I love the website www.stopthethyroidmadness.com

mp
post #4 of 862
Quote:
Let's get a list of links/books/etc. going so we can direct newly diagnosed people to some good sources without having to dig through a lengthy thread.
I like ithyroid.com.

Pros: does a good job of discussing the role of vitamins and minerals in thyroid functioning, both for hyper and hypo. Talks about symptoms (in general) and does a good job linking specific ones to specific minerals. It has as much discussion on hyper as it does hypo, which seems pretty rare. Offers a vitamin/mineral based (do-it-yourself, no products sold) way to deal with hypo- or hyperthyroidism. Has lots of references for published studies (animal and human).

Cons: The discussion of lab results doesn't do a good job in talking about which part of the normal range healthy-feeling people are usually in. Also, there's not a lot of emphasis on the root cause of vitamin/mineral imbalances (though there is some info, you just need to dig). Not very helpful for things like med dosages, which thyroid replacement med is appropriate, things like that.
post #5 of 862
Quote:
Originally Posted by mamapoppins View Post
Subbing! Thanks Jessica!!!

Has anyone else had any trouble getting their Armour lately? I have, and I usually get it through Walgreens. They told me I would haveto wait over two weeks for my script!: Anyway, I called my doc, who is an hour away, and she siad she doesn't think Walgreens does a good enough job of trying to keep it stocked. So, I am now getting my script from a smaller pharmacy,and it's being mailed to me. How cool is that?
There are occasional shortages and some pharmacists will tell you they aren't making it anymore, which isn't true. Armour has a website and you can always check things out with them to get the straight dope.

http://www.armourthyroid.com/
post #6 of 862
I'm subbing 'cause this is so interesting to me. I just had my TSH done and it was 5.2. I'm going for further eval in 2 weeks and I'm glad to have more thoughts to discuss with my new doctor. Any suggestions for me are welcome!
peace and health,
post #7 of 862
I didnt join the other thyroid thread because by the time I discovered it it was just to long to catch up with.

I had my thyroid removed in 96 due to cancer and have been on meds since. Though in the last few months I have missed so much that my levels were rock bottom I know I shouldnt do that but so much going on and depression may be a reason as well anyway here I am and if I get time I will come back and share the whole story if anyone is interested. And I am always willing to talk to others about thyroid cancer and the type I had, papilary sp* if they want to ask anything about it.
post #8 of 862
Quote:
Originally Posted by MCatLvrMom2A&X View Post
I didnt join the other thyroid thread because by the time I discovered it it was just to long to catch up with.

I had my thyroid removed in 96 due to cancer and have been on meds since. Though in the last few months I have missed so much that my levels were rock bottom I know I shouldnt do that but so much going on and depression may be a reason as well anyway here I am and if I get time I will come back and share the whole story if anyone is interested. And I am always willing to talk to others about thyroid cancer and the type I had, papilary sp* if they want to ask anything about it.
I have papillary, too (TT in April 2007, RAI in September 2007 - which caused depression and weight gain). I have another tumor that they're keeping an eye on...ultrasound in October to determine if I'm getting more RAI. Anyway, I feel you...this sucks.
post #9 of 862
Thread Starter 
Quote:
Originally Posted by MCatLvrMom2A&X View Post
I had my thyroid removed in 96 due to cancer and have been on meds since. Though in the last few months I have missed so much that my levels were rock bottom I know I shouldnt do that but so much going on and depression may be a reason as well anyway here I am and if I get time I will come back and share the whole story if anyone is interested. And I am always willing to talk to others about thyroid cancer and the type I had, papilary sp* if they want to ask anything about it.
Quote:
Originally Posted by AfricanQueen99 View Post
I have papillary, too (TT in April 2007, RAI in September 2007 - which caused depression and weight gain). I have another tumor that they're keeping an eye on...ultrasound in October to determine if I'm getting more RAI. Anyway, I feel you...this sucks.
We would love to hear your stories! This thread has turned out to be a great resource for a lot of people and I'm positive that hearing your stories would be beneficial to many of our members.

My grandmother has hyperthyroidism and had thyroid cancer, but getting her to talk about her health is nearly impossible. She doesn't like for anyone to worry about her, so she keeps things quiet. This is my paternal grandmother.

I also have a maternal grandfather and mother with hypothyroidism. I think I'm just doomed! So far I'm taking Levothyroxine, but I hope to give Armour a chance sometime in the near future.

I don't have time to post more today (we have to attend Marc's grandmother's 90th birthday party!)
post #10 of 862
OK here is my story. Sorry it got so long.

I was diagnosed with papillary thyroid cancer in 1996 at the age of 24. I had a total thyroidectomy in April of and radioactive iodine in May. But my story doesn't really begin there. When I was 18 during treatment for an unrelated issue, that I cant remember now the Dr. felt the goiter on my neck. Instead of sending me for tests or doing blood work the Dr. put me on thyroid medication to take for 90 days. The reason for this was at the time I had no insurance so there was no specialist that would see me.

I took the pills for the 90 days then forgot about it since they didn't make a difference in how I felt or the size of the goiter. I didn't have a regular family Dr. either it was a walk in clinic I had been going to. So nothing else was done about the goiter and I didn't think any more about it until 96 when at my Dr. appt. for my yearly physical he became concerned about it though he hadn't been concerned about it the past 2 yrs I had been seeing him he just ordered blood work each time that came back totally normal.

But at that appt. he decided that I should see a endocrinologist so off I went. He sent me to have a u/s then a thyroid uptake scan (take radioactive pills then lay for a loooong time) I don't remember exactly how long I had to lay there but it felt like a eternity since I wasn't supposed to move at all.

After the results came back he decided to do a biopsy since it wasn't 100% clear if it was cancer or not. The biopsy was not pleasant. It didn't hurt really since he numbed the skin but I could feel the needle moving around in there and it made me come very close to passing out. Just from the sensation He had to stop until I could get control of my reaction. The biopsy showed that it was indeed papillary cancer. I wasn't really surprised since I had a feeling something was going on. So when the goiter was originally noticed it was cancer then I was walking around with it for 6years and possibly longer since in some of my high school photos you can see what appears to be a knot there and I am pretty sure I remember wondering about it even back then. So had it been a fast growing cancer I probably wouldn't be typing this right now all because I didn't have insurance.

Within hours you could see that the goiter was getting bigger From the poking and prodding and messing with the cancer I guess. I got the results shortly after while I was at work. Everyone was upset for me but I guess I had just pretty much shut down my usual way of dealing with traumatic things like that.

I was told that there was a possibility that my voice wouldn't come back after the surgery since they were going to have to scrape the area to get every bit of the thyroid they could and also because of that the little glans that had something to do with calcium uptake might be damaged as well and that was something we would have to worry about after when they could check my blood. Thankfully that wasn't a problem. But my voice was gone I could talk in a hoarse whisper like someone with laryngitis. Talking on the phone was nearly impossible since I just didn't have the volume to be heard.

The surgery was scheduled ASAP which just happened to be a week after we celebrated our 2year anniversary. On the way there I broke down crying in the car terrified of the general anesthesia not really the cancer at that time just the fear of dying when I was put under. A big huge deal to me was my wedding band I had never had it off and was adamant that it not be removed. I would have walked out had they insisted I take it off it was that important. So the nurse taped it on and the surgeon said it was fine. So that part was a relief. After I got back to pre op. where I was alone and I couldn't speak to answer the nurses questions. I had never been in the hospital or been ill before so it was all overwhelming.

The nurse was kind to me and asked if I would like something to help me relax and I agreed. She said that it would basically knock me out. Well it did take the edge off but in now way did it knock me out I wasn't high or anything but it defiantly didn't do what she expected. My mom and me have high tolerances for narcotic drugs so I was able to get up and go pee just before they took me back which blew the nurse away she just kept saying "I cant believe you are able to walk around like that"

They took me back shortly after that and I went to sleep. When I woke it wasn't like I had been truly asleep it felt different. But I wasn't in pain but I was ticked because they had put that gunk on my eyes and I kept asking the nurse for something to wipe it off with. When she didn't bring it I used the sheet I woke again as they were wheeling me to the room I was going to stay the night in to see my dh and parents and il's there by me. I just smiled and closed my eyes again. Relieved to still be alive.

When I got to the room they asked me if I was thirsty and of course I was terribly so they gave me the water. Knowing how dry my throat was I knew not to take a huge drink so I just took a tiny sip but still it made me cough because I was not able to work my throat muscles like normal. They were a bit paralyzed still. My mom asked me if I got to much but I shook my head no. After that the second drink went down pretty well when I just let it run down by itself instead of trying to actively swallow.

I still was not in pain but the nurse asked me if I wanted some morphine and I said OK still not out of the anesthesia and was not thinking clearly so she put the shot in my IV. Dh was already laying down half asleep and my mom was in a chair the same way. It was around midnight I think and had been a really long day for them. Well within 15min. I was rudely awaken to severe nausea, had I been in my right mind I would never have agreed to the morphine because any pain shot like that 15 min. after getting one I puke.

So I couldn't talk just a hoarse whisper and I was holding on with all my might to keep the nausea down while trying to get dh or my mom awake. The nurses couldn't have heard me over the intercom didn't have strong enough voice for that. Finally my mom woke and I said "sick" and she grabbed the little kidney bean dish and well you can guess I was terrified I would pop my neck open though it didn't hurt thank goodness. Mom called the nurse she came in checked my neck then got me a shot of anti nausea and I went to sleep.

When I woke the next morning the only thing hurting was the IV and my back from the lovely hospital bed : The first thing I asked when the nurse came in to do morning check was can you please get this IV out and when can I go home

The Dr. came in and I asked the same thing and he said the IV could go since I was able to drink and if I could get up and move around he would let me go around noon. He told me that the cancer had spread to 1 lymph gland that was successfully removed and he was pretty sure that he had gotten it all but wouldn't know for sure until the pathology report came back.

I got up and went to the bathroom and my mom helped wash some of the lovely beta dine off me. It was down my back to my waist : Well I got woozy and told mom I had to lay down right then but the lady was changing my bed and didn't want me to she wanted me to sit. Had I stayed sitting I would have passed out on the floor so I just climbed onto the bed anyway I was discharged that day at noon.

I healed fast and was back to my sewing job in 2 weeks, tried to talk the surgeon into letting me stay off longer but he wouldn't : During this time was when the OJ Simpson thing was going on and there I was with my throat cut open and you can imagine some of the comments.

Anyway the next month May I had to go in for radioactive iodine treatment. They told me I might be there up to 5 days depending on how long it took the radiation level to drop. I was told no one could visit me in the first 24 hours at all then only for very limited times after that based on levels. I was devastated All alone hour away from family etc. The room was covered in plastic everything walls, floor, phone, toilet etc. I was in a corner room so that there would be no patients near me. The room next door was empty on the cancer floor of the hospital.

They came in pushing a cart with a lead square container on it and wearing radiation "buttons" (to tell them if they were being exposed) and they opened the box inside was another lead container this one round. Inside that one were 6-8 capsules I had to be the one to touch them they wouldn't/couldn't because of the high levels of radiation. So I took those and asked if they ever made anyone sick and they said no but if they do come up we would have to start all over : thank goodness no issues.

They told me the more I drank and caused my salivary glans to work the faster the radiation would pass since it comes out through urine and spit. So I started drinking and they had some lemon drop candy (cant even type that or say the words lemon drop without getting nauseas now) I sucked the candy and drank pop by the gallon and peed like a race horse I spent the majority of the night awake reading Clan of the Cave Bear by Jean M. Auel & watching a little TV. I slept maybe 4 hours then started reading again. I started the 3rd book in the series The Mammoth Hunters.

I only saw 1 person when they brought in my food tray that evening then the next morning someone brought me breakfast but neither spoke to me and left ASAP I was up taking a walk on my plastic covered floor the next morning when I heard a beeping outside my door. I knew it was the guiger counter thing since he got a baseline scan of me right after I took the pills the day before. He knocked and came in and asked me if I had been up walking, since I jumped in the bed when he knocked and I said yeah and he said he could tell cause the number was going up and down as I walked. He scanned me and he was surprised to see that my levels were in the "safe" range and I would be able to go home that evening. First time he said that anyone had dropped low enough that fast I am special

So I got my discharge papers and my thyroid medication script and left when dh got off work and could come get me. When he was discharging me he made sure to tell me to stay away from pg woman and babies for at least 2 weeks :

I started the meds and within a week my voice was returning My dad had been particularly worried about that and I called and spoke to him so he could hear that I was nearly back to normal. He was thrilled. To this day if I my levels get to low my voice shows it.

I had to go once a year for uptake scans (take the small dose radiation then lay forever) up until 99 when I had my last scan. I was ttc had been for 2yrs and had to put that on hold for 3 months but the good news was the first month after I got pg with dd My levels fluctuated a lot when I was pg with her. I went in every 3 months for bw and every time they had to up my levels. It stayed high after her birth and did the same thing with ds. Only in the last year has it started to need to be lowered.

I had zero issues with bfing had a oversupply if anything and neither kid had been affected in any way.

So that is my story way to long I know I don't mind questions and would be happy to answer any that anyone might have. Thanks for reading
post #11 of 862
Thanks for sharing your story - I can relate to so much of it...

I had a considerable bump on my throat, too. I went to my PCP (at the urging of my husband). Had the biopsy (which is, to this day, the worst experience of my life - hearing the needle "pop" through my bump made me want to puke. I literally cried through the entire thing and the ultrasound student in the room held my hand) which came back as cancer. It took them TWO FREAKING WEEKS to inform me of the diagnosis. Makes you wonder if doctors ever have procedures like this!

I had surgery last year when my kid was 13 months - I had to wean her over all this (still horribly sad about that). Total Thyroidectomy and lymph node removal. Luckily I had clear margains so it was assumed that they got everything (more on that later).

They no longer do Radioactive Iodine in the hospital for isolation (I am serious that this should really bother every single person out there - there are people that are HIGHLY radioactive walking around in society because doctors don't even offer standards of how long patients should hole up in their house OR suggest they stay in hotel rooms!!) so I was at home - TWO WEEKS without any human contact. Well, I take that back, a girlfriend of mine dropped off a meal, but wouldn't come inside since she was still nursing and didn't want to be near me...and my husband had one dinner with me. I spiraled into depression...and since we haven't been able to get my meds back on track since that I'm still depressed.

Like I mentioned earlier, at my last ultrasound they discovered a "suspicious nodule" (read: missed tumor) that we're watching to see if it grows or not. If it grows then I'm off for another round of RAI/isolation...if not we're going to TTC. Either way is big news for my little family.

Anyway, I've been told time and time again that this is the "good cancer." *eyeroll* It's not good...it's actually a lifetime affair.
post #12 of 862
Yeah mine was "the best kind of cancer" to get if you got cancer. It has a very high cure rate is why they call it that but still Uggh.
post #13 of 862

Armour

I called the maker of Armour Forest a few weeks ago. The details are kinda fuzzy in my mind so you should call. They said they had plenty of 1/4 grain. There was a supply issue with the 1 grain that would be over by the end of Sept. And there was a supply issue with the 3, 4, and 5 grains which would be a problem for even longer. I just kept going to different pharmacies to see who had it in stock.

So, here is my new problem. I told my dr that I was feeling hyper. I went to get tested and my tsh was 3, my T3 was normal and my T4 was LOW. I was also low in vitamin D so I'm going to add cod liver oil.

I've been taking just the one grain while I waited on these test results. I'm supposed to continue doing so for another month and then test again. I still feel a little hyper, but not as bad.

Depending on the labwork, I'm going to go back to synthroid or some other T4/T3 combo. I am on a lot of support for my adrenals. I did do a liver cleanse ( a very, very small one) so maybe I convert t4 to t3 better than i thought?
post #14 of 862
Thanks so much for starting a new thread! I tried to get a little love on the last one...no luck.

So I'll try again!

If you are dx with Hashimotos how did you get the dx?

I started all of this with an enlarged thyroid (according to my hcp) and she sent me for u/s. Found a nodule (3.6cm) and a large thyroid. Nodule had a biopsy done - it was negative! So my hcp told me I had Hashimotos and wanted to redo labs. I asked for the recommended labs and she complied. I'm told my TSH is still within normal limits and that my testosterone is low. Other than that I don't have any info. I'm headed to the doc in 2 weeks and will get copies of labs.

I'm just wondering if hcp conclusion is hashi's because of my symptoms or my labs? She has not started me on any meds - because my TSH is *normal*. If she thinks I'm normal...why the dx? Ya see my point?

Incidentally I was also dx with Rheumatoid Arthritis as a total fluke. Was glad to get the figured out! I'd have just continued to suffer in pain silently because I figured my joint pain was the extra weight I'm now carrying. GO figure!

~L.
post #15 of 862
my endo ran a test to see if i had antibodies against my thyroid. get a copy of your labs b/c you either have it or you don't, i think. sorry i'm not more help. he told me i would yo yo between hyper and hypo regardless of my tsh. i'm not sure if that is true or not. he also told me an anti inflammatory would help with my "flare ups." i don't really find that to be true, but whatev.

good luck.

Sounds like you have some immune system problems if you have hashis and Rheumatoid Arthritis.

Quote:
Originally Posted by llnmaw View Post
Thanks so much for starting a new thread! I tried to get a little love on the last one...no luck.

So I'll try again!

If you are dx with Hashimotos how did you get the dx?

I started all of this with an enlarged thyroid (according to my hcp) and she sent me for u/s. Found a nodule (3.6cm) and a large thyroid. Nodule had a biopsy done - it was negative! So my hcp told me I had Hashimotos and wanted to redo labs. I asked for the recommended labs and she complied. I'm told my TSH is still within normal limits and that my testosterone is low. Other than that I don't have any info. I'm headed to the doc in 2 weeks and will get copies of labs.

I'm just wondering if hcp conclusion is hashi's because of my symptoms or my labs? She has not started me on any meds - because my TSH is *normal*. If she thinks I'm normal...why the dx? Ya see my point?

Incidentally I was also dx with Rheumatoid Arthritis as a total fluke. Was glad to get the figured out! I'd have just continued to suffer in pain silently because I figured my joint pain was the extra weight I'm now carrying. GO figure!

~L.
post #16 of 862

Hi everyone,
I haven't been diagnosed with anything (well, haven't seen a doc) just having suspicions that perhaps my thyroid is overactive.

I had a baby 10 months ago (my second), I lost all the baby weight pretty quickly and in the last couple months have lost an additional 10-12 pounds - I guess this is what has me thinking about a thyroid prob because I have not tried whatsoever through diet or exercise. I used to exercise at least 4 times a week to try to lose/maintain. and now it seems the weight just keeps dropping off while I do nothing. I am still nursing so maybe I am just lucky? It is just weird for me as this has never been my 'problem'. I have always had to 'work' to keep my weight down. I am pretty average - about 5'5" and now about 120 pounds. My average was around 132. I did get down to 124 when I had circumstancial depression a few years ago.

I do have some other possible symptoms:
Frequent bowel movements - talking 3 or 4 times each morning - usually very loose.

Fatigue and Insomnia - Throughout my life I have had bouts of insomnia though and the fatigue could be attributed to being at home with my 2 girls.

Concentration - some days I just can't get my words out, can't focus, feel like I don't know how I can get through the day. Also used to have a really good memory, now CRS.

Dizziness - throughout my life I have had dizzy spells sometimes accompanied by hot/cold flashes. I have mentioned it to doc's and they have blamed low blood pressure.

Mood swings/depression = I do suffer these, however as mentioned before I have had circumstancial depression which the circumstance is something that kind of lingers at times in my life.

Neck pain - Not sure if this is even worth mentioning but I almost always have a sore, tense neck. No bumps or goiters or anything though. I think it is just wear I carry my tension.

So...I am not sure if this is something I should bother going to a doc for or if I should just consider myself lucky that I have been able to bounce back to my teenage weight.

Should I be concerned?
TIA
post #17 of 862
Daizynee,
I would suspect adrenal fatigue before thyroid problems in your case. I'm not a ND or any kind of medical professional though, so take that with a grain of salt. The reason I say this though is because I had severe adrenal issues when I was younger and it sounds almost exactly like what you described. Additionally, the low blood pressure makes it suspect. I had one boyfriend describe the tension in my neck as "It's like your tendons are made of wires."
There's an adrenal fatigue thread kicking around somewhere and you may get more information there. I'm not too "up" with adrenal fatigue. (Don't know much about it iow.)
post #18 of 862
Okay, thank you for your response. I will check that out.
post #19 of 862
Quote:
Originally Posted by nichole View Post
my endo ran a test to see if i had antibodies against my thyroid. get a copy of your labs b/c you either have it or you don't, i think. sorry i'm not more help. he told me i would yo yo between hyper and hypo regardless of my tsh. i'm not sure if that is true or not. he also told me an anti inflammatory would help with my "flare ups." i don't really find that to be true, but whatev.

good luck.

Sounds like you have some immune system problems if you have hashis and Rheumatoid Arthritis.
Okay thanks! It looks like I need to see if I had a test to check for antibodies. I'll check on that this Friday.

May I ask if she did test it and it was normal - what would the next course of action be? Clearly I have an issue with my thyroid - it's large and has a large nodule growing on it. Then there are my other vague/annoying/sometimes life limiting symptoms. Do we assume it IS a thyroid issue even though according to my hcp my bloodwork is essentially *normal*?

I really, really, really want to get started on something med wise ASAP as I'm missing out on life and my kids are missing out on mommy because I'm so darn exhausted all.the.time! But if labs are normal (per hcp) I'm in for a fight, right?

And yea...if I do have hashis and rheumatoid arthritis - I'm pretty sure something is going on with my immune system! Where to start with that?

~L.
post #20 of 862
llnmaw - a LOT of people with thyroid cancer have negative biopsies and we all, pretty much, have TSH within the normal range. I'm jus tossing that out there. If you have a growth on a vital organ then this is a problem.

A girl on another board of mine had a partial thyroidectomy because she had a growth, negative biopsy, fine levels, etc BUT something was wrong. They lopped off that part of her thyroid (cancer free) and she now feels great.
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