The THYROID Thread

[mrsklamc]

Dr. says the thyrogen will be available this month "as far as she knows" and she's "OK with waiting."

Though I don't have most of the traditional symptoms, they think I may have PCOS, which is unrelated to the thyroid stuff. I just lost the medical/environmental/genetic lottery.

 

[luvmarypoppins]

Micayla - I think our hosp. literature says something like thyrogen allows our patients to have a good quality of life while undergoing treatment? Something like that, or does not intfere with life?? I would have to look up the exact words. But you get the jist.

I would pick the thyrogen in a minute, but that is just me. You have to do what is best for you.

Christine -I just didnt like the feel of them, but the moon roof is nice.

dischick - I live about Mid Suffolk. You can get to my town by either exit 62,63 or 64 on the expressway. I go to SB. Home of the best ideas in medicine, well thats what is says on tv

Well in my endo saga. I am getting the blood work tomm., monday dh is taking me for a sonogram. Only bad thing is its in the hospital. Its the only available appt. I dont like going there, too many bad memories, but our friend is having surgery and maybe we can see how he is etc. Then the 18th I asked my oldest ds to take me to the endo. So he will ask his boss on tues. He better say yes. So I had to call and say keep, keep the visit etc. They must think I am a looney tune! And now our compressor has blown out of our central ac unit. Can I just say its hotter than blazes here. I dont think this is too good for the synthroid. I am sweating most everything out. I had cramps yest. so I ate a banana today. Worse, the guy cant get the part for a week since our unit is so old and dh refuses to get a whole new unit, just too expensive he said right now. Oh well.

 

[luvmarypoppins]

Well I just got back from the blood test and after it was over and I was signing the papers, I realized that she didnt check off the vitamin D blood test,

Hmm, I questioned? the tech. She said, yes she wrote your vit d deficiency diagnosis but didnt order the test.

So she told me to call the nurse on monday and ask if they want the test to be run.

I dont know if my endo wanted it done or not. I think she always does it, so I really cant remember. I am also wondering if she is a bit rushy with the patients. I am seriously going to be looking at all my paperwork before I leave the office at the check out desk.

 

[luvmarypoppins]

Chatty one here

Tomm. ds19 is taking me for my sono as dh forgot he has a meeting. Good since he wants to volunteer there anyway, helps with getting into the nursing program possibly. Also our friend is having surgery so I might pop into the surgery pre wait area and read the board and see how he is etc.

Here is my question. When you have a sono, how far up or down do they go on your neck., I looked at the order and it said check lymph nodes in neck and thyroid bed. for lymph node mets.

My question and I am going to ask the sonographer is since I had the level 2 infected lymph node will they go that high up, its under my ear etc, where does the neck lymph nodes start, level 2 or 3. I dont know if the endo knows about this (the rad. onc. also didnt get the surgeons note about his biopsy etc.). I guess I just want to cover all my lymph node bases if I can etc.

Any thoughts.

 

[mrsklamc]

I don't think they went up as high as under my ear.

 

[dischick4778]

luvmarypoppins - I have a brother in law in suffolk around exit 63. He is a deputy sheriff so if you ever get pulled over on the LIE by a Grauso tell him you know his SIL Jenn.

As for the sono, I had a neck sono in my endo's office back in April. It was literally 5 minutes long. It did not go up to my ear. And I apparently had stage 4 aggressive with several tumors also in my lymph nodes. Good luck tomorrow!

 

[luvmarypoppins]

Well I am back from the sono. I remember why I hate going into the hosp. seeing way too many sick people and doing way too much walking. My tech was so nice. She even talked to me alot. mostly about my neck, surgery etc. I told her about the lymph node and asked her - how high will you go. She said - as far as the ultrasound will let meS o guess what, she went right up behind both ears! My gosh, my regular lady at the other place never does that and she never even speaks to me. I think this girl will go on maternity leave, so I probably wont get her again. So I guess its back to my regular girl.

On the way out I saw my stomach surgeon. I said hi, but I guess he didnt hear me, my voice was so bad. Ds said, why didnt you say hi, I said I didIts def. the heat etc. He had on green scrubs, carrying a back pack, white lab coat and funniest was he was carrying an edible arrangement. I know his one sec. is in the hosp so maybe its her b day etc.

I also left messages and asked them to call me saying if they were going to be doing the Vit D testing on the blood draw from sat. No news yet. So I guess if that whole thing gets messed up and she wants it, I might have to have another one.

Next monday is my endo visit and then I am scheduling a mamo and the eye specialist appt. That one should be interesting. They say maybe the rai messed my eye up?

Jenn - OMG! You must come out to 63. If you bring your ds I guess we could hit Chuck E cheese or something kid friendly. My one ds works in a bowling alley. I dont think thats too kid friendly for a 1 year old. Hmm, we must meet sometime!

I am getting so dehydrated. I taught vbs at my church today and the ac in the room really doesnt work. It was 83. I come home and my broken central ac house is 83 too!

Also this week I am taking the synthroid at 6:30 am instead Of my usual closer to 9 am. Anyone think this will be a problem. I dont know what the difference would be? I know they always say take it at the same time everyday etc.

 

[luvmarypoppins]

Well I got a surprise call from the endo yest. She told me she ordered the Vitamin D level so they are awaiting the results of that but all my tests are pretty good and my tsh is 0.02, so on Monday she said she is going to talk to me about lowering the synthroid.

She said then you can stop being so jittery and you are doing so well that is why I am lowering it. I do want to ask her what are the chances of the cancer coming back if she lowers it too much and its agressive etc.

She also said she saw the ent surgeons note and wanted a sonogram to see that lymph node. I told her I just had the sono on Monday, the one you ordered for me. (Guess she forgot that she wanted me to get it done every 6 months???)

Gheesh first she forgot the one lab and now she forgot she ordered the sono?? They keep records of all tests even ordered, its copied and put into your chart etc.

I am a little concerned about her "forgetfulness".

So what if she lowers it too much etc? I dont want to go from totally hyper to hypo and get tired and gain weight etc. Also if its the wrong dose, I have to pay $25 for each script. And do they do blood work to check on the new level?

 

[mrsklamc]

LMP- I don't think taking your synthroid at 6:30 will matter too much for one week as long as it's still an hour away from food, etc. Your dose averages out over time so I think it will be alright.

I'm sorry for all the confusion with your tests. We really have to be our own advocates! I think I posted on here about how they were trying to put me on the diet in January when I wasn't having a scan, just a blood test!

 

[itsdisneytime]

I have been reading . .and im really reluctant to say this because you all don't know my personality well enough to know that I WOULD NEVER say anything to be intended as negative so please dont take this that way ...


But ... you all make me scared. I came to this thread at the suggestion of LMP and It has been helpful to a degree but at the same time, I am REALLY NERVOUS that I am not getting good care, but that seems to be the norm here unfortunately. I'm seeing who is considered ""the best'" endo in town and he has been suggested to me by several folks who did not even know one another so i took that as a good sign.

Simple facts are this: I had papillary thyca 7/21/09 complete removal ... this july 21st will be 2 years .. ive consistently had low blood calcium due to 2 of my parathyroids accidentally being removed. I have low vit d also ...

I take 250 mg synthroid
I take 500 mg calcium citrate x 4 a day (chewable pills)
I take .25 mg calcitriol x3 a day
I take 1 per week 50,000 btu vitamin d

I dont have my stats in front of me but I will say I was going once every 6 weeks to endo and just last month he said i can come every 6 months ... reading here makes me wonder why i have NEVER had a scan, not a thyrogen or cytomil (sp) ... nothing other than the normal old blood work and seeing the endo in the office ....

I asked my endo the other day if he can tell if my cancer is coming back and he quickly and very cockily said "" I KNOW IT ISNT"" your tsh is .5 .... if that is even what he said ... i just remember thinking .. okay, he knows it isnt but how do I know?

I mean, in the end I know I should be talking to my doc and not relying on you all to give me info all the time .. but, do you think I should be kicking and screaming? Also, im 37 and never had a mamo? with a past history of cancer should i have one now?

Im sorry, but if one of you all would even take the time to read this endless email and be kind enough to respond it would sure help me.

xoxox

 

[mrsklamc]

It's so hard to know....I would just say, "I've been networking with other patients and it seems like most of them have RAI scans...I wonder why we aren't doing that." Or however you feel comfortable phrasing it. Doctors are busy but it is a MUST with me that I be able to ask them questions.

Yes, I think you should get a mammogram. Once you have had one type of cancer you are more prone to others.

Welcome to the thyroid thread!

 

[luvmarypoppins]

Shannon, Please, Please ask all the questions you want. We are here to support each other. I think I would be lost in my thy cancer journey if it was not for this thread.

You should ask your endo any question you want, its your body and health.

I think the scan is standard and I too would ask your endo why you did not have one? I know you mentioned that you had external beam radiation. Did he explain why you were having that course of treatment? Were you rai resistant?

I do take the vit. d pill too for the low level. I get that tested every 6 months and I also am 2 years out post op.

Dischick can maybe help more on the parathyroid stuff as she is dealing with this.

For 2 years out mine is pap with lymph node spread and agressive columnar cell variant stage 4 and my schedule is this:

Endo every 6 months - she will do all the blood testing, comp met. panel, tsh, t3 or T4, vitamin d level etc. Also sonogram of the neck.

Rad. oncologist - once a year. Mine feels after 2 clean scans she will do a thyrogen stiumlated test, which I just had. Now I will only see her in one year with no testing being ordered by her.

My drs. have a thyroid cancer team, you have a surgeon, rad. onc. and endo assigned to you. I go to a university teaching hospital. If you live near one it might be a good option for you if you do not like the endo you are dealing with. At the least they could review your records and see what kind of care you have been receiving and make reccomendations for you from there.

Hope this helped a little. Wishing you all the best. You are welcomed here

 

[dischick4778]

Just met with my endo today, first time since my scan two weeks ago. She said she was happy that my scan was clean but we still have to be cautious because my antibodies were still in the 700 area. They have definitely come down from the original 3,000 but she would like to see a low number around 0.

She did however lower my synthroid from 224 to 200. That is exciting to me. I have been feeling stressed and nervous and anxious all the time so I'm hoping the slightly lower dose will calm some of this. My endo said to come back in two months to check my blood with the new dose. Every time she adjusts the dose I have to see her in two months to see how the blood levels look. She also said that if the antibodies are still a high number she will recommend another scan next year.

As for my paras, yes I did have trouble with the reimplantation. I now take calcitriol twice a day and 1000 calcium and follow a high dairy diet. I eat lots of cheese and yogurt and drink milk. If I miss my dairy, like when I was on the LID I had terrible numbness in my hands, legs, and back. It is not a good feeling.

I personally think the scan is essential. As you can see my antibodies are still high yet my scan was clear. So the blood work isn't always an exact indicator that everything is good or bad.

 

[Christine]

I have been reading . .and im really reluctant to say this because you all don't know my personality well enough to know that I WOULD NEVER say anything to be intended as negative so please dont take this that way ...


But ... you all make me scared. I came to this thread at the suggestion of LMP and It has been helpful to a degree but at the same time, I am REALLY NERVOUS that I am not getting good care, but that seems to be the norm here unfortunately. I'm seeing who is considered ""the best'" endo in town and he has been suggested to me by several folks who did not even know one another so i took that as a good sign.

Simple facts are this: I had papillary thyca 7/21/09 complete removal ... this july 21st will be 2 years .. ive consistently had low blood calcium due to 2 of my parathyroids accidentally being removed. I have low vit d also ...

I take 250 mg synthroid
I take 500 mg calcium citrate x 4 a day (chewable pills)
I take .25 mg calcitriol x3 a day
I take 1 per week 50,000 btu vitamin d

I dont have my stats in front of me but I will say I was going once every 6 weeks to endo and just last month he said i can come every 6 months ... reading here makes me wonder why i have NEVER had a scan, not a thyrogen or cytomil (sp) ... nothing other than the normal old blood work and seeing the endo in the office ....

I asked my endo the other day if he can tell if my cancer is coming back and he quickly and very cockily said "" I KNOW IT ISNT"" your tsh is .5 .... if that is even what he said ... i just remember thinking .. okay, he knows it isnt but how do I know?

I mean, in the end I know I should be talking to my doc and not relying on you all to give me info all the time .. but, do you think I should be kicking and screaming? Also, im 37 and never had a mamo? with a past history of cancer should i have one now?

Im sorry, but if one of you all would even take the time to read this endless email and be kind enough to respond it would sure help me.

xoxox

I don't want to scare you either but I do think your doctor is not being "on the mark" with you. You should have had a scan and your TSH level tells NOTHING about if you have cancer or not.

Where are you in Virginia?

 

[itsdisneytime]

im in norfolk va.

 

[Christine]

im in norfolk va.

Darn, I was hoping you were up my way!

Your treatment seems very non-standard to me but without you specifically asking your doctor why, we don't know the reasons. It could be that your cancer was SO small, that he didn't feel the need for this sort of follow up. That is done, when the cancers are "microcancers" however I have read that they are getting away from treating them so minimally because they have found that even people with microcancers have had spread to the lymph nodes.

I know that it is VERY stressful to feel like you are not getting the proper treatment YET you don't want to challenge your doctor or make any changes. It is hard.

When I was first diagnosed in 1995, there was barely and internet and certainly no thyroid support groups. There was nothing out there that could tell me much about my disease or how I should be treated. I live in a suburb outside of DC that has a pretty crappy hospital and is not known for great specialists.

I ended up with a local endo who, I swear, had never treated a thyroid cancer patient. And my step-mother-in-law, who worked at the NIH in the endocrine pathology department would never come out and tell me she thought he was not the best choice for me because she didn't want to get in my business.

So I end up, at the beginning, being treatment incorrectly for a very small thyroid cancer tumor which resulted in me needing two extra large dose RAI treatments. After a year with the clueless doctor and me deciding to see treatment at another facility, the nuclear technician kind of hinted at me that my treatment was "odd." She gave me a name of a specialist and I went to him and never looked back. I'm mad at myself for not being more aggressive in the early days (but I was too wigged out at that time) and, yeah, I've never gotten over my step-MIL not helping me more.

So, if you are feeling insecure about what your doctor is doing for you, I'm here to tell you that many of us have been in that boat and it is not a fun place to be. But if your gut feels like something is wrong with it and you cannot get good answers from your doctor, there is NOTHING wrong with getting a second opinion. Just make sure you go in there with your initial pathology report and a writeup of everything you've done so far.

 

[luvmarypoppins]

Well I am back from the endo. She said all my labs were good so she wants to reduce my synthroid from 200 to 175. I asked her if that is what she was doing to supress the cancer then would the cancer come back if she reduced the dose.

She saidd she really didnt know so we would have to watch it carefully and so she will order the blood tests for 2 months and then the normal 6 month one. She also said she wanted the sono to be every year now. I told here I would definetely feel better with having one every 6 months, so she said ok, 6 months.

She also said that my bone fracture score is so high that if I fall down right now I will probably break one of my hips, so she really wants me to have the reclast infusion. I discussed with her the side effects I read on the internet and she said she does not know of anyone who had them more than a short while, the flu like symptoms and bone pain.

She said if the cancer didnt come back in 2 years I would be ok, and I am 2 1/2 years. I didnt want to argue with her, but originally she did tell dh and I it was 3 years and she only had 1 other patient now had this and he was a male so that is all she could compare me to etc. Not a good comparison.

I see her again in 6 months and she will call about the blood work and adjust it from there. I also told her about the little incident of waiting till december. She said, there is no way I would wait that long to see you, we would have worked something out. Ok. nice to know if that happens again, since it will probably be a snow storm during my next visit in Jan etc.

Christine..and she said she would be ok with my tsh being a 2 or 3, does that sound right? After she adjusts the synthroid.

She said all the tests indicate that there is no cancer in my body. Hmm, I think my ent surgeon said its the microscopic stuff that does not show up on tests etc. It was nice to hear that but I always keep thinking of stuff in the back of my mind, not like ever never, more like when and whatever

I just thank God for each day and the good reports so far. I will take what I get for sure. I dont want to ever seem ungrateful. I guess its always in the back of your mind. It never goes away. Just gets buried a little deeper for a while etc. Anyone else feel or think like this?

 

[1Grumpy9]

I finally go back to my endo next Monday for a check up since it has been almost 8 weeks since changing to the new meds. I can say now that I am feeling sooooo much better with the Tirosint rather than the Synthroid!!! I don't get the muscle cramping. I am a little more figity and I haven't been sleeping the best lately, so it is making me think that my dosage might be a little too high. This is a new med, so it is a trial period since it is fairly new, but it seems to be better for me so far. I was very lazy before starting this, now, it seems to have brought my energy back.

I still take the calcitrol (rocaltrol) 6 every day, but I have to watch that I don't take them too close to my Tirosint because it will cancel it out.

I will be excited to see what happens with my numbers. I am hoping they are back to a normal range and maybe we can lower my dosage a little bit. As soon as I hear I will post my update.

 

[luvmarypoppins]

1Grumpy9 - So glad to hear the new med is working for you. Its good your endo is following you closely. I am sure you are glad to have more energy.

I am getting my synthroid lower, so I am hoping in about 8 weeks to be less hyper and have more energy too! We shall see.

 

[Christine]

Christine..and she said she would be ok with my tsh being a 2 or 3, does that sound right? After she adjusts the synthroid.

I admit I'm kind of surprised by this. As low risk as I am and as far out from my initial diagnosis, my endo would like me to be more supressed (I am at 0.3). My old endo "allowed" it also because I was low risk and I needed quality of life. I don't think they would have been happy at all with 2 or 3. I think a level of 2 or 3 might be fine once you are WAY out from diagnosis. For instance, by the time I'm in my late-60s, say, it will probably be good for me to have my TSH rise a bit--less stress on the heart and bones.