The THYROID Thread

[dischick4778]

mrsklamc - I am so sorry that you are going through this. Sending you all my best thoughts, prayers, and . Please be strong and do what needs to get done.

As for my visit to the surgeon - it went well. The only thing he is not happy about is my voice. He did say it could take up to 6 months but he thought it would have improved by now. I know there is a procedure for it, but I'm just not sure I'm mentally up for another procedure at this point. It doesn't seem that important to me. I can be heard, I just cannot raise my voice / speak loudly.

I'm concerned about the comments regarding the thyroid medication. I am taking levothyroxine 150. The bottle says to take on an empty stomach and not to eat for 30 minutes. Which I have been doing. Someone wrote that Calcium can interfere? My surgeon has me taking 2,000 calcium every day because I have had numbness in my hands since the surgery. He said that the numbness comes from the parathyroid that they reimplanted and in order to improve it I have to take calcium. Is this a problem with the levothyroxine? I would think my surgeon or endo should have told me this and now I wonder if I should be concerned.

 

[luvmarypoppins]

dis chick - I dont know about the calcium question. My endo also has me taking 50,000 vit d once a week.

Also I only do the name brand synthroid because of what I read here on the boards about the filler. My ins. doesnt pay for it, but I figure its worth it to me to get it so there wont be any problems etc.

Did you see my post about that surgical procedure. There are many things they can do before they would resort to that. I had the many scopes and in January I had the strobe test. Ask your surgeon about this. They hook up something like a dog collar on your neck and make you say eee and aaa alot and the wires are connected to a computer that prints out a reading which is being looked at by a speech therapist while the surgeon/doctor has the scope down you. Strange but a very definitive test as to whats going on. My test showed no damage and good vocal cord function but still the voice problems persist. It helps to be hydrated and I found that sucking on hard candys, not necessarily the lemon drops, helps. Even a jolly rancher etc.

 

[angwill]

mrsklamc - I am so sorry that you are going through this. Sending you all my best thoughts, prayers, and . Please be strong and do what needs to get done.

As for my visit to the surgeon - it went well. The only thing he is not happy about is my voice. He did say it could take up to 6 months but he thought it would have improved by now. I know there is a procedure for it, but I'm just not sure I'm mentally up for another procedure at this point. It doesn't seem that important to me. I can be heard, I just cannot raise my voice / speak loudly.

I'm concerned about the comments regarding the thyroid medication. I am taking levothyroxine 150. The bottle says to take on an empty stomach and not to eat for 30 minutes. Which I have been doing. Someone wrote that Calcium can interfere? My surgeon has me taking 2,000 calcium every day because I have had numbness in my hands since the surgery. He said that the numbness comes from the parathyroid that they reimplanted and in order to improve it I have to take calcium. Is this a problem with the levothyroxine? I would think my surgeon or endo should have told me this and now I wonder if I should be concerned.

I would just call you doctor's office and ask about the calcium. It maybe that you should take it at a different time than the synthroid. I just make sure to take the thyroid med with only water first thing in the morning and I take my vitamins and any other meds in the evening.

HTH

 

[Christine]

Just take the calcium two hours apart from the thyroid medication.

Also, since you must take this calcium, they will just continue to up your thyroid medication dosage so that you get enough even with the calcium *maybe* interfering. It might just be that you need a higher dose of thyroid medication while you take the calcium. Lots of thyroid patients have to do this so I am sure they are familiar with how to work around this issue.

 

[Dιsneч Tιnk ♥]

Wow! we have a Thyroid thread (sorry, im new to this and a bit dim)?!
That's brilliant, i can't often talk about it because not many people i know have Thyroid problems and they dont understand but it's nice i can talk and say that i have an Under-Active Thyroid without people asking "Whats that?" and me repeating myself like a book

anyway,

i have an under-active thyroid from when i had cancer when i was 9 due to all the chemo (i think thats what caused it, im not too sure, my mum knows everything, i just know i have an under-active thyroid and have to take tablets). Ive had an Under-Active Thyroid now for a couple of years, and have to take Levothyroxine(sp?) once daily for the rest of my life or until i need to stop taking them. I also noticed when i was first diagnose with an under-active thyroid, my hair fined, i had really thick hair and now its fine and horrible which the doctor said would happen which is a bit of a pain

 

[Christine]

Wow! we have a Thyroid thread (sorry, im new to this and a bit dim)?!
That's brilliant, i can't often talk about it because not many people i know have Thyroid problems and they dont understand but it's nice i can talk and say that i have an Under-Active Thyroid without people asking "Whats that?" and me repeating myself like a book

anyway,

i have an under-active thyroid from when i had cancer when i was 9 due to all the chemo (i think thats what caused it, im not too sure, my mum knows everything, i just know i have an under-active thyroid and have to take tablets). Ive had an Under-Active Thyroid now for a couple of years, and have to take Levothyroxine(sp?) once daily for the rest of my life or until i need to stop taking them. I also noticed when i was first diagnose with an under-active thyroid, my hair fined, i had really thick hair and now its fine and horrible which the doctor said would happen which is a bit of a pain

Welcome.

I never had my hair thin out at all when my thyroid was shut down (surgery). I did go through a spell of losing a lot of it when it got REALLY underactive (hypo). But it all came back when my levels of thyroid hormone got where they needed to be. I know that if your meds aren't adjusted right (too much or too little) it can affect your hair but it shouldn't be permanent.

Now, chemotherapy for cancer, on the other hand is FAMOUS for changing people's hair. Many people lose their hair when they have chemo treatments and say that when the hair grows back it is very different.

 

[Dιsneч Tιnk ♥]

Welcome.

I never had my hair thin out at all when my thyroid was shut down (surgery). I did go through a spell of losing a lot of it when it got REALLY underactive (hypo). But it all came back when my levels of thyroid hormone got where they needed to be. I know that if your meds aren't adjusted right (too much or too little) it can affect your hair but it shouldn't be permanent.

Now, chemotherapy for cancer, on the other hand is FAMOUS for changing people's hair. Many people lose their hair when they have chemo treatments and say that when the hair grows back it is very different.

Thankyou for the welcome

my medication hasnt been adjusted or anything since i've been on the tablets, my mums trying to push our local hospital (they dont specialise in the chemo and that, they're just the basic for accidents and ill children and that so we had to travel) because my levels are just under, but they seem to think its okay and doesnt need changing.

My hair changed ALOT when it grew back from chemotherapy, i was originally a strawberry blonde and it was really thick before i lost it, then it grew back black and thick, then when i lost it again it came back mousey brown and a little less thicker.

 

[dischick4778]

Spoke with my surgeon and as many of you said he suggested taking the calcium later in the day.

luvmarypoppins - thank you for the info on the voice procedure. My surgeon hasn't really gone into detail about it, he just keeps saying they can fix it. So I didn't know what they would do. What you are describing doesn't sound so bad. But it is still early. Hopefully it will heal on its own. Thank you for the info though, I feel a lot better.

 

[grafxgirl]

Has anyone ever been told that they are at an increased risk for developing breast cancer since they have a thyroid disorder?

My Gyn had me do a pre-screen mammogram (I'm 35 with Hashimoto's) a month ago. Thankfully everything came back okay, but my insurance company won't pay for it because they deem it unnecessary since I am not 40 or older. I've read studies that show that women with autoimmune thyroid diseases such as Grave's or Hashimoto's is at an increased risk of developing breast cancer, and the fact that I've had a few of the Radioactive Iodine Uptake Tests also increases that risk.

If I can prove this to be true, and prove that it is medically necessary then my insurance company will pay for the mammogram.

I see my endocrinologist on Monday, so I will ask her and I also have a phone call into my Gyn to speak with him. He will call me back during his office hours after he is finished with his scheduled patients.

 

[mrsklamc]

Grafxgirl- my endo said I'm at a slightly higher risk of developing other kinds of cancer but they don't know if it's due to the same factors that caused the thyroid cancer, or the RAI treatment. Probably not very helpful to you, I'm sorry.

Does anyone know if my second dose of RAI will be larger since the tissue is presumably resistant?

 

[Christine]

Grafxgirl- my endo said I'm at a slightly higher risk of developing other kinds of cancer but they don't know if it's due to the same factors that caused the thyroid cancer, or the RAI treatment. Probably not very helpful to you, I'm sorry.

Does anyone know if my second dose of RAI will be larger since the tissue is presumably resistant?

It probably should be but you never know.

When I had my first "remnant" that needed to be ablated, they gave me 150 mci (this was after my initial 29.9 mci treatment that did not work). The next time I went in (a year later) the residual tissue was still there yet it was smaller and uptaking less RAI. The doctor then wanted to give me 200 mci because the smaller it gets and the less it shows up on RAI, the more RAI it needs to destroy it. I *begged* him not to give me 200 mci because I had such a problem with 150 mci (terrible nausea, fried salivary glands, an insulin/blood sugar problem while in the hospital after my treatment that was very scary). So he relented and did the 150 mci again. I didn't seem to suffer so much with the second 150 mci (my salivary glands were okay, no blood sugar issues, same nausea). It happened to work that time and I've been free of residual tissue ever since. But, the thinking on the part of the nuclear physician is that the smaller/less visible it was, the more RAI needed to get it.

 

[es45]

It probably be should be but you never know.

When I had my first "remnant" that needed to be ablated, they gave me 150 mci (this was after my initial 29.9 mci treatment that did not work). The next time I went in (a year later) the residual tissue was still there yet it was smaller and uptaking less RAI. The doctor then wanted to give me 200 mci because the smaller it gets and the less it shows up on RAI, the more RAI it needs to destroy it. I *begged* him not to give me 200 mci because I had such a problem with 150 mci (terrible nausea, fried salivary glands, an insulin/blood sugar problem while in the hospital after my treatment that was very scary). So he relented and did the 150 mci again. I didn't seem to suffer so much with the second 150 mci (my salivary glands were okay, no blood sugar issues, same nausea). It happened to work that time and I've been free of residual tissue ever since. But, the thinking on the part of the nuclear physician is that the smaller/less visible it was, the more RAI needed to get it.

Christine, it seems that residual tissue is a common problem. However, recurrences are rare, correct?

 

[Christine]

Christine, it seems that residual tissue is a common problem. However, recurrences are rare, correct?

It's hard to say. How many "recurrences" are actually residual tissue finally deciding to get busy 10 years later? I don't think anyone has a way of really knowing. I have supposedly been clean since 1998? But am I really? What if something pops up in another 5 years. Was I really clean? I don't think so. It's just hard to say. In my opinion, recurrences are the result of residual tissue. Residual tissue found consistently after diagnosis is just that=residual tissue and should not be deemed a recurrence. I guess if I get something it the next few years it is a recurrence. I don't think they are all that rare, actually.

 

[luvmarypoppins]

Micayla - wishing you all the best. Sending thoughts and prayers your way. Hang in there girl! You know you are tough!! What was your original rai?

My rad. onc. said I got 150 mci for the normal dose, then 25 mci for the lymph node mets and then another 25 mci for the agressive columnar cell variant. So 200 mci total.

I dont think I could handle more than 200 mci at once again if I have to too. I am a pretty big person anyway, so maybe she took that into account too?

Any idea when you will get your treatment yet? Well go have a nice berry sorbet o.k.

 

[mrsklamc]

Micayla - wishing you all the best. Sending thoughts and prayers your way. Hang in there girl! You know you are tough!! What was your original rai?

My rad. onc. said I got 150 mci for the normal dose, then 25 mci for the lymph node mets and then another 25 mci for the agressive columnar cell variant. So 200 mci total.

I dont think I could handle more than 200 mci at once again if I have to too. I am a pretty big person anyway, so maybe she took that into account too?

Any idea when you will get your treatment yet? Well go have a nice berry sorbet o.k.

DH thinks they said 139 for my original dose, I thought it was 159. I get my TSH tested tomorrow and if it's above 30, they will schedule it. I think it takes 1 day to get that TSH number back and then I don't think they have the dosage right there at the place I think they have to order it so I anticipate Weds. at the earliest. Honestly I'm just kind of BORED with all this at the moment, isn't that silly? I should be worried about the cancer I suppose and whether the RAI is going to take this time but I'm just so DONE being on this stupid diet and not feeling like myself.

 

[luvmarypoppins]

DH thinks they said 139 for my original dose, I thought it was 159. I get my TSH tested tomorrow and if it's above 30, they will schedule it. I think it takes 1 day to get that TSH number back and then I don't think they have the dosage right there at the place I think they have to order it so I anticipate Weds. at the earliest. Honestly I'm just kind of BORED with all this at the moment, isn't that silly? I should be worried about the cancer I suppose and whether the RAI is going to take this time but I'm just so DONE being on this stupid diet and not feeling like myself.

O.K. I am gonna be bored with ya, I am bored and sick and tired of changing this bandage twice a day and sick and tired of the surgeon being on vacation etc. I cant wait for Sept 7th to get here and he better have a good plan for me.

Oh here is an interesting little side note....when I got my original scan I still had the infection in my stomach (this was the stomach surgeon who told the rad. onc. to still give me the rai.She said I was going to be a :radiation risk" with the draining wound. . So draining wounds show up on the nuclear scans.

 

[mrsklamc]

Had the blood draw this morning, but just from how i feel i am fairly certain it will be high enough. This is my third time going hypo and it has been different every time..Is that strange or have others experienced that? For example, this time I seem to sometimes get especially anxious in the evening.

There are very few friends I would trust to cook for me on the LID but one begged to and oh is it AMAZING. She made chicken soup with chicken from trader joe's and no yolks..carrots, celery, non iodized salt...I don't remember if there was anything else but she wrote out all the ingredients for that, pork fajitas (except she ended up bringing them with bib lettuce to wrap them in because she couldn't find salt-free tortillas) and apple crisp. She is seriously my hero for the day.

 

[Christine]

Had the blood draw this morning, but just from how i feel i am fairly certain it will be high enough. This is my third time going hypo and it has been different every time..Is that strange or have others experienced that? For example, this time I seem to sometimes get especially anxious in the evening.

There are very few friends I would trust to cook for me on the LID but one begged to and oh is it AMAZING. She made chicken soup with chicken from trader joe's and no yolks..carrots, celery, non iodized salt...I don't remember if there was anything else but she wrote out all the ingredients for that, pork fajitas (except she ended up bringing them with bib lettuce to wrap them in because she couldn't find salt-free tortillas) and apple crisp. She is seriously my hero for the day.

That sounds delicious!!!

Yes, everytime I went hypo it was different. For me, it got worse each time. And I'm sure you remember my posts back in June. I was off my meds for 6 days and had some serious anxiety. I felt all choked up like my throat was swollen and I couldn't swallow. That happened to me also in 1998 but not till the VERY end.

 

[luvmarypoppins]

Micayla - Glad to hear you got the blood test, but sorry about your hypo issues. Cant comment as I am the thyrogen lady.

Wow, that is an amazing friend to cook for you. I felt like I couldnt trust anyone but I was thinking of asking some lady from my church about the home made applesauce she makes but I didnt. I think I would like the apple crisp too!!

Wishing you all the best and I hope your dh doesnt have to go to jury duty or at least gets it postponed.

Hang in there!!

 

[mrsklamc]

Thank you!!

This particular friend is very unusual in terms of her food trustworthy-ness. She has a son with a rare allergy to a food dye and she has SOMETHING that causes her to go into anaphylactic shock but they haven't been able to pinpoint what it is, so she definitely 'gets' food issues. She provided extremely detailed lists of what she put in everything, i.e. "No Yolks' noodles, ingredients:"