The THYROID Thread

[mrsklamc]

Thinking of you as well, Christine!

Angwill, how is it going?

LMP- The US actually had to be rescheduled, they wanted to do it at 2:15 PM and we needed to be well on our way by then, so it's a week from tomorrow now.

The surgery was uneventful, and relatively minor as BC surgery goes. We are awaiting the result of the testing to see whether she needs chemo or just the radiation.

 

[angwill]

Thinking of you as well, Christine!

Angwill, how is it going?

LMP- The US actually had to be rescheduled, they wanted to do it at 2:15 PM and we needed to be well on our way by then, so it's a week from tomorrow now.

The surgery was uneventful, and relatively minor as BC surgery goes. We are awaiting the result of the testing to see whether she needs chemo or just the radiation.

I am fine thanks for asking. Still having a bit of intestinal issues at 3 weeks post RAI. I am just so happy all the worst is over with now. I am thrilled to be able to have some of my energy and mind back. I really didn't think I would make it much longer being low thryroid really is like being in hell.

I am so sorry to hear about your MIL. During all my thyroid stuff it really seemed to pour for me too with one big issue happening after another. It can seem so overwhelming. I do hope the best for your MIL and am glad to hear her sugrery went well and I am praying that the treatment be as simple as possible and results be the best possible.

DMLani,

So sorry to hear about your DH. I was where he is at the beginning of July having TT on July 30th. My mass was bigger than the one side of my thyroid but all encapsulated and didn't spread thank God. Getting that sucker out of there will be a relief for him. I worried so much about the sugery and in reality that was the easiest and most relieving part when it was over for me.

1Grumpy9,

Having to switch meds and having been on such a high dose has to be extremely frustrating. I am so glad they found a solution for you in the new med. Thankfully I had hypothyroidism for almost 20 years before my TT and RAI so I am expecting it to work again for me. I was always on a higher dose though but only 250 mcg and right now the endo put me on 300 mcg after RAI. Thanks for sharing that just incase anyone else has those issues.

LMP,

Having worked around doctors I can tell you sometimes the ones who are all business are the best. Stick with her and hopefully you will grow to appreciate her. Not everyone wants a friendly doctor either and a lot of times they get that all business approach to avoid getting attached to patients. It is actually suggested not to be personal with patients so you avoid the emotional connection. I will admit though that I do not like a doctor who is impersonal and all business sending me for test after test without explaination to why. What bugs me more is those same doctors who do not tell you options and pros and cons of those tests.

Ang

 

[luvmarypoppins]

ang - sorry you are still dealing with the intestinal stuff. I cant remember how long my issues lasted.

Are you on 300 mcg of synthroid? Post op my endo put me on 200 mcg and my family thought I was off the wall. Even at 175 it was bad but I felt better. Now I am at 150 and its ok. I couldnt stand all the heart palps at 200 etc. But she said there was no way she was lowering it with my aggressive variant for a long time etc.

Well Friday I am starting the testing. I booked the blood and urine tests. She did tell me what she is looking for. I have a very bad family history of heart stuff since my parents and my sister are all deceased from heart related things at a very young age etc.

Well a week from this Friday I am going to be walking around Epcot at the Food and Wine with my dh and the 2 ds, so its all good

 

[angwill]

ang - sorry you are still dealing with the intestinal stuff. I cant remember how long my issues lasted.

Are you on 300 mcg of synthroid? Post op my endo put me on 200 mcg and my family thought I was off the wall. Even at 175 it was bad but I felt better. Now I am at 150 and its ok. I couldnt stand all the heart palps at 200 etc. But she said there was no way she was lowering it with my aggressive variant for a long time etc.

Well Friday I am starting the testing. I booked the blood and urine tests. She did tell me what she is looking for. I have a very bad family history of heart stuff since my parents and my sister are all deceased from heart related things at a very young age etc.

Well a week from this Friday I am going to be walking around Epcot at the Food and Wine with my dh and the 2 ds, so its all good

I am hoping the intestinal stuff goes away soon. I had awful itching for a while there too it was to the point I was breaking out in hives and scratching till I was bleeding. I don't know if it was the RAI in my sweat, hives from the bad anxiety I had during hypo hell, or if it was taking enough calcium and vitamin D. It is gone now though, thank God. Benedryl and Zyrtec did help while it was going on if I remembered to take it. Hypobrain was not good to me either. lol

I was on 250 mcg of levothyroxine before TT for my hypothyroidism and my tsh was within range. I felt low and far from hyper then. I am on 300mcg now post TT. I am pretty sure I will not go hyer on 300mcg. I have read the body always needs a higher dose after TT than before for people with hypothyroidism. Everyone is different too and I don't think I am very sensetive to the meds like some are. I was on the end of hyperthyroid at one point in my hypothyroid journey and didn't feel heart palpitations but really enjoyed the extra energy I had. I miss it. lol I am tall cell variant, the agressive cancer, as well. I was lucky mine did not go outside the tumor walls. Anyway, I did talk to my Endo's nurse and questioned being on a higher dose of levothyroxine than before and she explained there is some calculations the endo uses to decided what dose to put someone on. I just said well he is the expert so I will trust him and if I go a bit hyper I will most likely enjoy an energy spurt anyway. lol

Well good luck on Friday and I hope all goes well for you with the testing and hopefully you beat the odds on the heart issues and all comes back good. Enjoy Epcot and eating your way around the world. That sounds like a very welcome break from reality.

 

[mrsklamc]

Margins were clear and so were the lymph nodes, so just radiation! Thanks for your support ladies!

 

[angwill]

Margins were clear and so were the lymph nodes, so just radiation! Thanks for your support ladies!

That is wonderful news for your MIL. Yeah!!! Can you be with her for the radiation?

 

[DMLAINI]

My husband had his thyroid removed yesterday & it doing well today (other than a sore throat & raspy voice)...just waiting for the pathology report. If he'd need RAI, how long would he have to be away from people? Just wondering because he's now out of sick time.

 

[luvmarypoppins]

Margins were clear and so were the lymph nodes, so just radiation! Thanks for your support ladies!

Great News!! I know the gals on the breast cancer thread says that the radiation makes you tired after a cumulative time. I know they say there is a cream you can get if it starts to burn your skin etc. If you have any other questions you can ask them, They are great gals.

 

[luvmarypoppins]

My husband had his thyroid removed yesterday & it doing well today (other than a sore throat & raspy voice)...just waiting for the pathology report. If he'd need RAI, how long would he have to be away from people? Just wondering because he's now out of sick time.

Glad to hear he is doing well. Did he have any lymph nodes removed, or just the thyroid? The voice def. takes a while to come back. Dont push it.

I had a lot of surgical trauma so my voice was really bad. I just found it better to text and write stuff on paper for a while. I hear others say just use your regular voice but no shouting etc. They actually gave me a pad and paper to write with for a while. Then some nurse kept saying, use your voice etc.

It seems everyone has different radiation precautions. Mine were super strict.
I think generally its a week. Maybe if he got it done on a friday then he would have the week end for 2 days of not working, so that might help a little etc.

My dh always figures the radiation out scientifically in half lifes. Not medically. But he says its a week etc.

I am sure next week cant come fast enough to get the path report. Hang in there and just support your dh as much as you can.

If he has swallowing issues maybe try soft stuff like yogurt, meatloaf, mashed potatoes etc.

Wishing him all the best.

 

[angwill]

My husband had his thyroid removed yesterday & it doing well today (other than a sore throat & raspy voice)...just waiting for the pathology report. If he'd need RAI, how long would he have to be away from people? Just wondering because he's now out of sick time.

Good to hear your husband is doing well. I was so lucky that I did not have a sore throat but I was told not to talk or as little as possible for a day or two. I didn't listen however. Too many nurses coming and going and my husband and son were there with me. Maybe if my throat hurt I would have shut up more but I was sooooo bored in the hospital overnight.

With RAI my nuclear med guy (they are all different) said it would depend on the job and if he is around children or pregnant women how long you would need to stay off the job. If not around either my nuc med dr said back to work after 3 days home after radiation. So if he can get it on a Friday he could go back Tuesday. I don't know what it would have been around children or pregnant women though since it didn't effect me. Your nuclear med guy or state could have a totally different set of rules though. He could call the hospital and ask for someone in nuclear medicine and ask them if he needs to know now.

Oh and before taking the therapy RAI he will need two days for whole body scans. He will go in one day and take a low dose RAI pill and then wait about 4 hours to get the first scan, the next day he gets the second scan. Scans take 1 hour each for me. That is when they know what dose of therapy RAI to order and when to schedule the therapy dose. Then a week after the therapy dose of RAI he will go in for another WBS so they can see what tissue the RAI settled into. Then he is done for about 6-8 weeks to get a blood test to see how his TSH levels are doing. At least this is how it is going for me.

 

[SingingMom]

Good to hear your husband is doing well. I was so lucky that I did not have a sore throat but I was told not to talk or as little as possible for a day or two. I didn't listen however. Too many nurses coming and going and my husband and son were there with me. Maybe if my throat hurt I would have shut up more but I was sooooo bored in the hospital overnight.

With RAI my nuclear med guy (they are all different) said it would depend on the job and if he is around children or pregnant women how long you would need to stay off the job. If not around either my nuc med dr said back to work after 3 days home after radiation. So if he can get it on a Friday he could go back Tuesday. I don't know what it would have been around children or pregnant women though since it didn't effect me. Your nuclear med guy or state could have a totally different set of rules though. He could call the hospital and ask for someone in nuclear medicine and ask them if he needs to know now.

Oh and before taking the therapy RAI he will need two days for whole body scans. He will go in one day and take a low dose RAI pill and then wait about 4 hours to get the first scan, the next day he gets the second scan. Scans take 1 hour each for me. That is when they know what dose of therapy RAI to order and when to schedule the therapy dose. Then a week after the therapy dose of RAI he will go in for another WBS so they can see what tissue the RAI settled into. Then he is done for about 6-8 weeks to get a blood test to see how his TSH levels are doing. At least this is how it is going for me.

Regarding whole body scans: remember mine was 22 years ago and I was super hypo due to no synthroid for the scan and was feeling miserable - but I wish I had Been mentally prepared for the scan. I had never had a medical problem before the thyroid trouble, and was only in my late 20's. had no idea what to expect. Granted, there is no pain involved, but the whole process of a big machine so close to you and having to remain still and feeling alone was very unnerving. So was the fact another patient was being scanned in the room and it was a toddler. Due to my emotional mindset at the time, the fact that a child so young was ill really upset me. I just mention this so anyone going through this feels they are not alone if they get emotional during their treatments. ((Hugs))

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

Good to hear your husband is doing well. I was so lucky that I did not have a sore throat but I was told not to talk or as little as possible for a day or two. I didn't listen however. Too many nurses coming and going and my husband and son were there with me. Maybe if my throat hurt I would have shut up more but I was sooooo bored in the hospital overnight.

With RAI my nuclear med guy (they are all different) said it would depend on the job and if he is around children or pregnant women how long you would need to stay off the job. If not around either my nuc med dr said back to work after 3 days home after radiation. So if he can get it on a Friday he could go back Tuesday. I don't know what it would have been around children or pregnant women though since it didn't effect me. Your nuclear med guy or state could have a totally different set of rules though. He could call the hospital and ask for someone in nuclear medicine and ask them if he needs to know now.

Oh and before taking the therapy RAI he will need two days for whole body scans. He will go in one day and take a low dose RAI pill and then wait about 4 hours to get the first scan, the next day he gets the second scan. Scans take 1 hour each for me. That is when they know what dose of therapy RAI to order and when to schedule the therapy dose. Then a week after the therapy dose of RAI he will go in for another WBS so they can see what tissue the RAI settled into. Then he is done for about 6-8 weeks to get a blood test to see how his TSH levels are doing. At least this is how it is going for me.

In my area, they no longer do the "pre-scans" as they are concerned with the low-dose RAI (tracer) causing "stunning" of the thyroid gland.

 

[angwill]

Regarding whole body scans: remember mine was 22 years ago and I was super hypo due to no synthroid for the scan and was feeling miserable - but I wish I had Been mentally prepared for the scan. I had never had a medical problem before the thyroid trouble, and was only in my late 20's. had no idea what to expect. Granted, there is no pain involved, but the whole process of a big machine so close to you and having to remain still and feeling alone was very unnerving. So was the fact another patient was being scanned in the room and it was a toddler. Due to my emotional mindset at the time, the fact that a child so young was ill really upset me. I just mention this so anyone going through this feels they are not alone if they get emotional during their treatments. ((Hugs))

"SingingMom" ....Sent from my iPad using DISBoards

Wow it is good to hear different views on this. I was super hypo and feeling awful for mine too and I was having anxiety issues. Mine was alone in a room and because I was so tired from hypohell I passed out during all my scan. Thank goodness when I sleep I don't move. I can imagine having a child in the same room going through that would not be comforting.

In my area, they no longer do the "pre-scans" as they are concerned with the low-dose RAI (tracer) causing "stunning" of the thyroid gland.

What is stunning? Remember my doctors here don't believe in LID diet so it would make sense they probably don't believe in stunning, whatever it is.

I do wonder if they can tell how much RAI is taken into tissues with the diet and without and all that other stuff? They did tell me the remaining tissues took in the radiation and everything looked good afterward. I still need to request copies of the results of all the scans from the hospital.

 

[Christine]

Wow it is good to hear different views on this. I was super hypo and feeling awful for mine too and I was having anxiety issues. Mine was alone in a room and because I was so tired from hypohell I passed out during all my scan. Thank goodness when I sleep I don't move. I can imagine having a child in the same room going through that would not be comforting.



What is stunning? Remember my doctors here don't believe in LID diet so it would make sense they probably don't believe in stunning, whatever it is.

I do wonder if they can tell how much RAI is taken into tissues with the diet and without and all that other stuff? They did tell me the remaining tissues took in the radiation and everything looked good afterward. I still need to request copies of the results of all the scans from the hospital.

Stunning is when they give you a dose of RAI (and even the tracer doses is fairly significant) and the gland absorbs it all and gets full of iodine. This iodine stays in your thyroid gland for several weeks (long half life). So when they go to give you the treatment dose, your thyroid gland is already full of iodine so it doesn't take it up as much.

Most of the thyroid gurus in the country definitely buy into stunning. Doctors who don't necessarily "practice" a lot of thyroid cancer don't overly buy into it. They think that the large dose they give is enough to overcome the tracer dose. Probably in many cases it is, but I often wonder why these doctors don't give the patient the optimum treatment. The LID can't hurt you and it *might* definitely help treatment. The pre-scan does of RAI was sort of deemed no longer a necessary step, could impact treatment, etc... I thought the nuclear community had determined various set doses based on risk factors.

 

[mrsklamc]

That is wonderful news for your MIL. Yeah!!! Can you be with her for the radiation?

Probably not for all of it- it's 4-6 weeks and they live about 10 hours away- longer when you are pregnant, and have to shift around/walk more often, and go to the bathroom about once an hour. DH's cousin is a SAHM though and has constantly been begging to come over and do anything she can. They see the oncologist tomorrow so we will have a better idea of what the schedule will look like after that.

 

[DMLAINI]

Thanks everyone!!! This thread is soooo helpful. Idk if the surgeon took lymph nodes. We removed the entire thyroid & glands.

 

[luvmarypoppins]

Thanks everyone!!! This thread is soooo helpful. Idk if the surgeon took lymph nodes. We removed the entire thyroid & glands.

Hmm, by "glands" do you mean salivary glands or parathyroid glands etc.?

Oh and if your dh does have to get rai def. ask about getting thyrogen.

Does your dh have an endo yet?

We can help you out with the LID if that is needed too.

I am thankful for this thread too. My hosp., the np, nutritionist, rad. onc., endo were all pretty good as they work on one cancer team but I still had lots of questions. My head was spinning post surgery too.

 

[angwill]

Stunning is when they give you a dose of RAI (and even the tracer doses is fairly significant) and the gland absorbs it all and gets full of iodine. This iodine stays in your thyroid gland for several weeks (long half life). So when they go to give you the treatment dose, your thyroid gland is already full of iodine so it doesn't take it up as much.

Most of the thyroid gurus in the country definitely buy into stunning. Doctors who don't necessarily "practice" a lot of thyroid cancer don't overly buy into it. They think that the large dose they give is enough to overcome the tracer dose. Probably in many cases it is, but I often wonder why these doctors don't give the patient the optimum treatment. The LID can't hurt you and it *might* definitely help treatment. The pre-scan does of RAI was sort of deemed no longer a necessary step, could impact treatment, etc... I thought the nuclear community had determined various set doses based on risk factors.

I don't get the problem if the ultimate outcome is to have the leftover tissue and thyroid cancer cells take in as much RAI as possible. So it takes in the smaller tracer dose and then fills the rest with the theraputic dose and in the end it gets fulll of RAI which is the ultimate goal, right? Or is the the strength so they are getting a small strength and then filling the rest with the larger strength? I think I am not understand it all but I am trying. I honestly have not seen anything about this on the thyca website or boards so it is interesting to me.

To be quite honest on the LID diet I was so extremely relieved to find out my endo didn't buy into the diet in the end. I was so depressed, anxious, tired, and miserable I could have cared less if I dropped dead from the cancer during the time I would have had to follow the diet. Honestly, everything major that could have happened to derail my healing happened between the TT and the RAI for my family and I that not having to really worry about LID but just being careful and having LID foods in the fridge and freezer was more than enough for me. I do not have any extended family to help me out either unfortunatly and neither my husband nor my son have a clue how to cook anything but eggs in the microwave. lol I think I got my dream doctor in that respect. I would have gladly skipped the two WBS before treatment too though. It would have saved me a lot of money being that I am a cash payer. I now have bills coming out the wazoo and getting them to agree to small payments and not paying in full without sending me to collections is a big challenge right now with some of the companies so skipping those would have been a financial relief if anything.

 

[angwill]

Thanks everyone!!! This thread is soooo helpful. Idk if the surgeon took lymph nodes. We removed the entire thyroid & glands.

Glad we could help. I got lots of help over the last couple months here and am very thankful. You can also check out the thyca boards. I hope they only took the thyroid and not parathyroid glands. Just ask the doctors what they took and ask for a copy of the results when you go in for the follow up visit.

 

[angwill]

Hmm, by "glands" do you mean salivary glands or parathyroid glands etc.?

Oh and if your dh does have to get rai def. ask about getting thyrogen.

Does your dh have an endo yet?

We can help you out with the LID if that is needed too.

I am thankful for this thread too. My hosp., the np, nutritionist, rad. onc., endo were all pretty good as they work on one cancer team but I still had lots of questions. My head was spinning post surgery too.

Your thyrogen question reminded me of a question I have for Christine if she knows. My doctor said they would not do thyrogen for the therapy dose only for my 6 month WBS to see how the RAI is working. Is there a reason why some doctors use thyrogen for the theraputic RAI and some make you go naturally hypo?