The THYROID Thread

[jennz]

I'm feeling better now. The coughing has stopped. I think I have been trying to do too much too soon. I'm glad the Dr gave me 2 weeks off. So when you got the results back did you have to go back in and have everything removed? The Dr said there is less than a 1% chance of it coming back malignant but I want to know what happens next just to be prepared. How are you both doing now? Has it been a while and are your thyroid levels normal on the replacement meds? Thanks again for all the advice

They called me at home - I think it was the next day - and told me the results came back and they were very sorry but it was malignant and they had me scheduled for surgery the next morning. I knew within the 48 hours. Unfortunately the 2nd surgery did my parathyroids in and I don't have those any more.

I get checked every 6 months for my thyroid levels. I think they probably need to be adjusted since I've been very tired. I've gained weight so that might be why - need more meds b/c there's more of me!

 

[torismom]

Hi, everyone I have a question for the thyroid experts. Due to my inability to lose weight, being tierd , a few other symptons and taking depression/anxiety meds My pysh dr tested my tsh levels and they were 4.36. He said that was high and I need to watch it. That was it. Anyone have advice for me?

Also, my dd will be going to an endo in Jan because all of her levels are her. Her tsh stuck out to me because it was over a 6. All of her numbers were high.She is also an asthmatic and takes a lot of steroids.

I am worried for the both of us. Thanks for any words of wisdom!!

 

[jennz]

Wow - what are you supposed to do to "watch it?" That's concerning...I have no way of knowing what my levels are! I can guess but that's it. I'm sure you must feel frustrated! Maybe you can ask your dd's endo about it and tell him you'd like to make an appointment to see him...how does that sound? S/he'll probably test other levels as well. Did your dr. run a cbc?

I know your levels can change even over such a minor thing as if your menstrating (sp?), but I'd say you need more input. Heck, I've been on meds for 15 years and I'd need more input!!

Good luck!!

 

[rie'smom]

Hi, everyone I have a question for the thyroid experts. Due to my inability to lose weight, being tierd , a few other symptons and taking depression/anxiety meds My pysh dr tested my tsh levels and they were 4.36. He said that was high and I need to watch it. That was it. Anyone have advice for me?

Also, my dd will be going to an endo in Jan because all of her levels are her. Her tsh stuck out to me because it was over a 6. All of her numbers were high.She is also an asthmatic and takes a lot of steroids.

I am worried for the both of us. Thanks for any words of wisdom!!

American Association of Clinical Endocrinologists that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0.( http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm)

Many doctors routinely treat patients in the upper 2 range. Honest to God, if I were you, I'd see another doctor. Your thyroid levels are so important not only to your health but to your quality of life. Who wants to just exist? I used to feel that I was just existing until my correct levels with Armour were
found. Your thyroid levels could be contributing to your depression and anxiety. I was on Prozac for 10 years before finding out about my thyroid issues. I've been off since 2000. I'm not saying that this will happen with you ,however, your thyroid can affect this.

I encourage everyone to investigate their thyroid problems. This is one site that I've found to be helpful. There's a link to her website. The thing I like about her is that she is a thyroid patient. She sees this from our perspective.

 

[CinderelliT]

Does anyone have adrenal gland problems with Hashimoto's?
I haven't taken the time to read the entire thread since I have a wedding to photograph tomorrow (Yay me!) and an 8 page research paper due on Monday (NOT yay me!).
I was diagnosed with Hashimoto's 10 years ago, and I currently take Armour thyroid. Every time I find a dr that I like, they either stop taking insurance, so I can no longer afford them, or they retire. Now I'm stuck with a quack. Anyway, I was originally diagnosed as having Addison's disease as well. I was put on steriods to help my adrenals, and for many years, the combination of steriods and thyroid medicine worked wonders. Then after my DD was born, I got really sick. It turns out that I developed Cushing's syndrome - which is the opposite of Addison's. The endo said that didn't really have a need for the steriods, and that I was not diagnosed correctly. So he weaned my off over the course of several months. I am better overall than I was then, but I am still having problems with my glands, my insulin levels and my blood sugar levels. I think that sometimes I need a small dose of steriods.
Has anyone else experienced anything like this? Right now I am also suffering from weight gain, severe depression, and anxiety. My TSH came back at 2.5, so Dr. didn't change my medication. Any advice and support is much appreciated.
Thanks

 

[lisah0711]

CinderlliT, I don't have any Hasimoto's advice for you but I would just keep pushing and pushing and questioning things. It took my endocrin doc over 3 years to put me on thyroid -- she just kept "hoping" it would come back to normal function. They aren't the ones who have to live feeling bad all the time and the only person who is going to advocate your cause is you. Unfortunately that is just the way our health care system works.

I do want to say a big, big thank you to the folks who do post on this thread. Thanks to you I got my doc to switch my prescription to Synthroid from the levothyroxine and I feel so much better already. For the two years I have taken thyroid now we have had problems getting the dosage right. I told the doctor that I heard that the generic is a problem because of the fillers and binders interferring with absorption. She said yes that was correct and agreed to let me try the Synthroid. I wanted to ask why she didn't do that from the beginning but she is retiring and I will be going to a new doctor so it is not worth pursuing. Grrrr!

 

[luvmarypoppins]

Just wanted to know if anyone did the low iodine diet before the radiation treatment. I dont go to the oncologist to next week and I dont know if this will be the treatment but it was mentioned. I looked it up on the internet and it seems basically you can eat nothing? Dairy? etc I am stressing out thinking what I could eat??

 

[lisah0711]

I don't have any low iodine diet advice for you -- I would like to think that if your diet was going to be really restricted they would have told you before you left the hospital.

I did want to say that I am glad that you are doing better after your surgery -- you're guardian angel was working overtime! No angel emoticon so I will send you some for a speedy recovery.

 

[teacups]

Hi All- I have no functioning thyroid due to RAI 20 or so years ago (by the way that would be less than my last resort if I could do it over again ) but I am wondering how my med replacement dose compares to others doses. I asked this once on another thread and got a bunch of "it doesnt matter what my dose is, everyone is differnt so knowing my dose wont help you". Yes. I fully understand that... but I'm terribly curious.
I take Armour Thyroid three 90's a day. So, 270 mg. 60 is a grain so under 5 grains.
That seems like a lot and I still feel so wrong. I'm simply curious.... I'd appreciate anyone on Armour (or even Synthroid. I can calculate the differences) who cares to share. Thanks!

 

[lisah0711]

Wow! That does seem like a lot! But that may be what it takes for your body to work properly.

I have taken anywhere from 25 mcg to 75 mcg of levothyroxine. I just got my doctor to write the prescription for Synthroid because of concerns about the binders and absorption in the generic. Now I am taking 37.5 mcg of Synthroid every morning.

I had another thyroid ultrasound yesterday to monitor the size of the nodules -- there are three. I've been working on this problem for five years now and getting a little frustrated that it is not consistently better and we still have to tinker with the meds. I start with a new endocrine doctor in March because my old one is retiring. I hope he isn't so conservative in his treatment. My old doctor always hoped my thyroid function would return to normal after a year or two -- hello! Five years now, I think we've waited long enough for that ship to come in . . . . sorry, just venting a little this a.m.

 

[KAMLEM]

I had my thyroid removed in June and we are still working on the dosage. She needs to increase it slowly because when she tried to do it more quickly I didn't feel well. Right now I am up to 150 mcg. I'm hoping that this does the trick.

As far as the low iodine diet, I did it. It wasn't fun at all. Right before I had the treatment they decided I didn't need it based on the body scan so I did it all for no reason!

 

[newarknut]

It's been two years since I had my cancerous thyroid removed. I did the radioactive iodine diet and it was alright. I remember eating alot of potatoes, hamburger, unsalted peanuts, and, oh yea, kosher wafers (nasty). I think I was able to use kosher salt for seasoning. Once you have a list of what you can eat, it's not that big of a deal. I did wolf down a big meal when it was all over with, though. The worst part was being a prisoner in my own home for over a week! My wife took good care of me while I was radioactive.

I had my last blood work done this past year using thyrogen shots and I'm all clear (as far as they can tell). Praise God.

If you're going through the process now, trust in the Lord and remember His many promises to love us and to watch over us!

FYI...I take 175mcg/day. I'm about 6'2" 200lbs.

 

[jennz]

I also have no thryoid and I take levoxy, 244 mcg/day (two of the 112 tabs). For whatever reason I was able to drop from around 350 on synthroid when I switched. My endos have liked to keep my TSH < .1 b/c of the cancer.

 

[Mimmy Mouse]

I just found this thread and boy am I glad. I am hypo. Let me give you a brief history. Was diagnosed with Hashimoto's thyroiditis when I was in my early 30's. I am now 63. Never had much of a problem all those years until about 4 years ago I started having a problem breathing, climbing steps and my heart was beating fast. My thyroid dr had just changed my meds about 3 weeks before. The doctor sent me for all kinds of tests thinking something was wrong with my heart. About 10 tests and 2 weeks later they found out that I was getting too much thyroid. I was taking .150 7 days a week. So they knocked off 1 day and all symptoms went away. Was fine again until last July when my family doctor noticed my last tsh test was on the low side, .4. So he dropped me from .150 6 days a week to .137 7 days a week. Take meds for 6 weeks then get a blood test. 6 weeks later it was .18. (I felt he was going the wrong way with the meds but I figured he was the dr. not me) So then he dropped me down to .125 7 days a week. 6 wks later blood test was .11. He put me back on .137 to try again. I asked to have all the tests done, not just tsh. I just got bloodwork back last night. Tsh now .04! MY t-4 total was 13.4 high (range 4.5-12.5) My Free T4 index was 4.2 high (range 1.4-3.8). My T3 total was ok 128. my t3 uptake was also ok 31. my t-4 free was ok too 1.6. I don't see the doctor again until next week and they won't tell me anything on the phone. I have no idea what all these numbers mean. Can anyone help? Sorry, guess not such a brief history. Thank you

Bette

 

[luvmarypoppins]

I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.

I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc.

I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?

Any insight, TIA.

 

[KAMLEM]

Why do you need to stay overnight for the RAI? I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.

 

[Christine]

Why do you need to stay overnight for the RAI? I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.

Each individual state has restrictions on whether you can leave the hospital after a high dose RAI treatment or you must stay.

In Virginia, if you have more than 29.9 mci of radiation, you must stay overnight. When your radioactive levels decrease to a certain level, you can leave.

Some states don't have this restriction and they let you leave right after you have a high dose treatment. The problem is that after these treatments, you emit an elevated level of radioactivity that can be harmful to children and pregnant women if they are within 6 feet of you.

 

[Christine]

I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.

I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc.

I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?

Any insight, TIA.

Here is the insight on this.

A few years ago, they did a study with people who scanned and had RAI after being off their meds and they tested against giving them Thyrogen shots and having the RAI. The RAI was less effective for those having Thyrogen shots. Treatment results were better if a person was removed from their Synthroid.

They were trying to get to a point where Thyrogen worked as well as going off your medication. Maybe they have gotten to that point (I haven't kept up with the studies) or maybe they results are close enough that it doesn't matter.

So, this is why you will get conflicting information. Some doctors still don't believe that TREATING they thyroid cancer under the Thyrogen injections is as effective or as good as removing you from your meds and then treating. Other doctors feel comfortable with it.

And certainly, if you have other health risk factors, going very hypothyroid could be detrimental to your health.

 

[luvmarypoppins]

Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.

 

[Christine]

Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.

Yes, it's probably too late. But, if you trust in your doctor and put your faith there, then you have to believe that you are doing the best that you can do for yourself at this time.

When I was first diagnosed in 1995, there were no support groups, no way to get my hands on any research, NOTHING. It all happened so quickly that I wasn't sure I was with the best doctor but when someone tells you that you have cancer, you don't really feel like you have time to shop around like you're buying a car. So I went with who I ended up with. Overall, I did not get optimal treatment initially and I ended up having successive treatments down the road that probably I could have avoided. But, well, what are you going to do, you know?

I agree that being in the hospital isolation is going to be FAR easier on you then staying at home. Depending on the dose they give you, you will not feel that great so it might be better to be alone. Also, you don't have to worry about tainting the silverware, the toilets, the bath, etc. The hospital will have to deal with that.