The THYROID Thread

[luvmarypoppins]

Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on (line for date)
Thyrogen Injection 2 on (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?

This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes.

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc.

I am only staying overnight for the lst day. That is a thurs., coming home on Friday the 13th and then sat. I am suppose to go for a blood test. at the local lab.

I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and hardly the rad. onc. did. at all.

 

[frdeb1999]

luvmarypoppins....if your not comfortable with any part of your medical team I encourage you to find new ones. We did this with my DH and it was the best thing we ever did. Very hard to do when your in the middle of all this. But you have to deal with them so often and if you don't see eye to eye, or have problems with them it is just going to make things harder. Good luck on all the upcoming things. Wish you nothing but the best.

 

[Christine]

Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on (line for date)
Thyrogen Injection 2 on (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?

Yes, I get the same paperwork when I have my scans. Usually you get a shot on Monday, a shot on Tuesday, you take your RAI on Wednesday and then scan on Friday. That's how it works with a scan. Wednesday is usually when your Thyrogen-stimulated TSH peaks so they like to give the RAI at that point. It is still probably pretty high for a few days.

This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes.

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc.

The diet is tough and conflicting. I never had any type of butter or margarine. There was a Fleischman's product that was deemed okay, but at that point, I just tried to avoid it. By the time you get to the hospital and eat their food, your RAI will be already at work so at that point, your as safe as your going to be with the diet. The key is to try your best and that's all you can do. Just remember that many years ago (when I was diagnosed), the Low Iodine diet wasn't even done. All they told me AFTER I had my treatment was to avoid fast food and seafood. That was it. Plenty of people did fine back then. Anything you can do with your diet is just helping and making it better.

I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and hardly the rad. onc. did. at all.


You know, there's always one jerk in every medical team. I was lucky that the radiology people with me were FABULOUS, it was just my endo and his nurse that plagued me for years. They were okay for the most part, but at times, they caused me a LOT of anxiety. I stayed with them because of their reputation. If this radiologist is one that your doctor trusts, you may have to overlook the bad bedside manner. So long as your treatment is good, you might just have to tolerate it.

 

[luvmarypoppins]

Well I was sick all week end throwing up with a virus I caught from ds21. So all week end I had absolutely nothing but gingerale and distilled water ice cubes. I am having dh call the rad. onc. today and see if this is o.k. I think I kept the synthroid down yest, but cant be sure. Never a dull moment. Well at least I didnt do the diet for 2 days, but dont know if this is acceptable or not. gheesh, never a dull moment around here lately.

 

[frdeb1999]

Hope your feeling better soon luvmarypoppins. We had that here last week and it's miserable.

 

[Christine]

Well I was sick all week end throwing up with a virus I caught from ds21. So all week end I had absolutely nothing but gingerale and distilled water ice cubes. I am having dh call the rad. onc. today and see if this is o.k. I think I kept the synthroid down yest, but cant be sure. Never a dull moment. Well at least I didnt do the diet for 2 days, but dont know if this is acceptable or not. gheesh, never a dull moment around here lately.

You are good to go. There is nothing in the diet that you *need* for the test. The diet is all about eliminating iodine. I think your virus helped you to do that successfully!!!

 

[angelat]

I have a question that I thought maybe someone else here might be able to help with. For the past 10 years I've had problems wtih dehydration (dry mouth, eyes, and muscle pain from dehydration) on a day-to-day basis. After I realized that this was an ongoing problem I just upped my water intake. I drink about 40-60 ozs of water at work and then another bottle or two at home at night. I've just learned to live with it all.

However, last Saturday I woke up to my left eye tearing horribly, by the end of the weekend my eye was also swollen and it hurt pretty bad. It felt like the film over my eye was peeling! Monday I went to an eye doctor (not my usual one b/c they don't take my medical insurance, only my vision insurance) they checked my eye and told me that my problem was that my eyes were EXTREMELY dry. He equated it to having chapped hands, only I have chapped eyes. He mentioned that it could be related to my thyroid problem.

Tuesday I called my Endocrinologist to let her know what was going on. I left a message anyway. Today I got a call back and she wants to see me on Monday.

Has anyone else had something like this? If so was it related to your thyroid? Years ago when I first started complaining to my PCP she sent me for bloodwork to check for Sojrens, but that was negative she said. I just want to know what is going on because after 4 days on the drops they gave me my eyes are still not feeling better.

TIA!!

 

[luvmarypoppins]

Well if you have read some other threads, you will see that I didnt have a virus, I had a bowel obstruction and spent a week in the hosp. after emergency surgery, so the radiation and diet is delayed again.

Just wondering if you did the diet, how did you keep food "moist" without gravy etc. I have a hard enough time swallowing etc. I did put some jelly on some chicken and got it down etc. If anyone has any tips, I would appreciate it.

 

[Christine]

Well if you have read some other threads, you will see that I didnt have a virus, I had a bowel obstruction and spent a week in the hosp. after emergency surgery, so the radiation and diet is delayed again.

Just wondering if you did the diet, how did you keep food "moist" without gravy etc. I have a hard enough time swallowing etc. I did put some jelly on some chicken and got it down etc. If anyone has any tips, I would appreciate it.

Hmmm...well, I never eat gravy anyway, so I don't know. When I had chicken on the diet, I vaguely remember using some recipe on the thyca website that had a balsamic glaze. Can't quite remember though. Here is a glaze/sauce from another low iodine book I have. Says it can be used as a dipping sauce for ribs, chicken wings, or chicken fingers.

2 cloves garlic, minced
1/2 small onion, minced
1 TBSP salt free tomato paste or ketchup
1 TBSP lemon juice
1/2 cup apricot preserves
1/4 cup orange marmalade
1/2 tsp. non-iodized salt
1/2 tsp. dry mustard
1/4 tsp ground ginger
1/4 tsp chili powder
1/4 tsp dried basil
1/4 tsp pepper

Combine all ingredients in a saucepan. Bring to a boil over medium heat. Boil for 30-45 seconds. Stir well to blend.

Sauce can be stored in the refrigerator for about a month. Delicious as a glaze or as a dip.

Here's another:

Pineapple Dipping Sauce

Delicious as a dipping sauce for chicken. Serve extra sauce over rice.

1 Tbsp. cornstarch
3 Tbsp. cold water
2 cups pineapple juice
1 Tbsp rice vinegar or lemon juice
1/3 cup minced red or green pepper
1/8 tsp red pepper flakes
1 cup finely chopped pineapple (fresh or canned)
2 green onions, minced
1 tsp minced fresh ginger

1. Blend cornstarch with cold water in a small bowl until smooth. Combine pineapple juice, vinegar or lemon juice, minced peppers, and red pepper flakes in a saucepan. Bring to a boil.

2. Add cornstarch mixture and whisk over medium heat until thickened and smooth about 2-3 minutes. Remove from heat and cool. Stir in pineapple, green onions and ginger.

Yields about 3 cups. Sauce will keep 4-5 days in refrigerator, in a tightly closed container. You can make half the recipe but it is so good, why bother?

 

[Bean and 2]

Hi...I've been reading here and thought maybe someone could help me out. This is kind of long so soory about that in advance. Last Sept I had some blood work before surgery and found out my thyroid was off. The Dr has since then been trying to get it right. These have been my blood test results so far.

7/10/08 TSH 10.08
9/18/08 TSH 11.78 Free T4 0.07
12/23/08 TSH 49.990 Free T4 0.85
1/21/09 TSH 17.20 Free T4 1.31
3/04/09 TSH 5.13 Free T4 1.8

My Dr wants to up the synthroid to 175 MCG. My problem is I feel fine and have felt fine. To complicate matters Jan-June of 08 I had chemo for breast cancer. I did fine through all of that sometimes I would feel a little more tired then usual but nothing big. I had surgery in July. I started radiation in Oct and finished that in Dec. Same thing there maybe a little tired but not excessive.

I'm probably not as active as I was before but I'm also 43 and a single parent. I've kept the same work schedule and my kids play indoor soccer and softball. I take them to all games and practices it's not like I've had to drag myself to any of these things. I guess I'm just wondering if I really have a thyroid problem? It's seems as though I do but I keep getting hung on the fact that I feel fine. I have a little more energy lately but I assume thats just getting over the chemo and radiation. I also had a pretty bad infection in Dec and spent 4 days in the hospital so I'm thinking it would take a bit to get over that too.

I guess I just want to know if I should feel bad with the TSH that high? This will be the 4th time the Dr has upped the dosage, should I be feeling different on each dosage? I just really don't want to take medication that I don't have to. Thanks for reading all of this and for any help you may have.

 

[angelat]

Your TSH levels have been pretty high at times. That's nothing to scoff at. Stay on the meds and just work with the doctor to help get them right. Not having your thyroid functioning properly can cause problems with other organs - including your HEART - even when you may feel fine. It's also harder to heal from things (surgery, wounds, etc) when your thyroid isn't working right.

A big to you for overcoming breast cancer. Another one for being a single mom through all of this. Be patient and let your doc do his/her job. I hope things start to get better and that you can get your levels into the normal range soon.

 

[Christine]

Having a TSH of 5.18 (your best so far) is not terrible. It is technically hypothyroid.

Some people don't feel bad with higher TSH numbers. I am one of those people. I remember after my last treatment (thyroid cancer) where my TSH got really high (130), when I started back on my medicines I gradually felt better and better. At one checkup, I told my doctor "I feel great!!" My TSH was at 8.5. Many people feel horrible at that level.

At any rate, I kept working at my dosage and I finally got to where I need to be (0.3).

I would suggest that you take the next dosage higher and work to get your TSH at around 2.0. That seems to be the "magic number" for optimal body functioning. You may not feel any better at that number than you do at 5.18 but I think it will be better for your body. And since thyroid hormones are not like "medications" per se, it does you no harm to increase the dosage.

 

[Bean and 2]

Thank you both for taking the time to answer. I started the new dosage this morning. Hopefully this will do it. I have 2 surgeries left for the reconstruction and then I'm done...I hope forever! I was just looking forward to getting a break it's been a really long year.

 

[Tinker'n'Fun]

Just thought I would hop in and introduce myself. My name is Diane and I have Hashimoto's Thyroiditis Bizarre. My thyroid was removed in 2002 due to a few nodules that came back inconclusive on the biopsy. All was well after the final pathology but they had to remove the whole thing. Struggled afterwards with Vitamin D/K/Potassium. Parathyroids were supposedly ok...

Fast forward to the last year. Levels are freaky. Vitamin D is non-existant, Potassium will not come up, need B12 shots, and TSH is around 8ish and my T4 is actually on the high side. They upped the Synthroid, but I need to get a scan on my parathyroids as the Hashimoto's may have attacked them. NOW I KNOW this is not normal. My doc says I am a test case. They think the Hashimoto's has cause more auto-immune in my system. They have taken my gallbladder and I have "suspicious lesions" on my lungs that they attribute to all this...

So hello, I will backtrack and read about you all. I look forward to posting with you all. Diane.

 

[Christine]

Hi Diane and welcome!

This all does sound strange. Do they suspect that your parathyroids are not working; hence, the low Vitamin D? Just about everyone is low on Vitamin D, thyroid issues or not, but I'm thinking yours is something else? How are your calcium levels? If they are fine, then I would be perplexed as to why the Vitamin D is low.

I have my entire thyroid removed, plus one parathyroid. My remaining three parathyroids are somewhere in my neck. I always worry about how they will ever find them if something goes wrong.

So your TSH is high but your T4 is high also. Very odd. Do they think that maybe you aren't a converter of T3?

 

[jennz]

Bean and 2 - right now you don't feel bad, but maybe after you increase your synthroid you'll look back and say "Wow! I feel better now than I did then." Usually the way I feel bad is tired, and when my levels are adjusted I feel like I have a lot of energy - not that I felt "bad" before but instead feel "good" now.

Tinker'n'Fun - I had hashimotos' too, and thyroid cancer. After the final pathology they saw that I had cancer and I had to go back in and have a 2nd surgery and my parathyroids never recovered.

I can definitely tell you if your parathyroids weren't functioning at all you'd know!! I take a lot of calcium and a synthetic vitamin d to help w/absorption. I wonder what your calcium levels are if you are super-low on D? Feel free to ask any questions and I'll answer what I can. I don't have potassium problems but they are always checking for it.

The B12 - my dad just had a gasterectomy (sp? stomach removed) and he has to get B12 injections b/c it won't be absorbed anymore. Just throwing that out there...

 

[Tinker'n'Fun]

Potassium - Low just under the required amount, but see red flagged as low
Vitamin D - very low. Has been for a bit, Dr. ignored.
Calcium - within the normal range, but strangly it is increasing at a steady rate even though I am not taking supplements and or consuming more.
TSH - HIGH
T4 free - HIGH (this should be low with a high TSH, right)
Iron - with in range
White count - high with markers for allergies high (tested no allergies found)
ANA - rheumo #'s within normal range as per Dr. I haven't got the copy yet so that is yet to be determined.
B12 - within normal to low with shots

I feel like crap. Tired, bones hurt, cold, vision problems, etc. I know the thyroid levels do a whopper to me, but this is more than normal. I also have fibro, IBS, and cervical disc disease. I am a dr's nightmare. My most recent problem is lower left quadrant pain. Thought it was a kidney stone but nothing showed. Nothing showed for diverticulitis either. So they are treating with just pain pills which I hate. I have Donnatal also for my stomach as the pain is causing nausea and I went 4 days without food.

So now I wait. If the #'s come backed skewed at the end of the month I will insist on a sonogram or whatever test they do to see the parathyroid. It's funny though I went 4 years without a blip in my thyroid levels. Well at least I now know why I haven't had the energy to clean the house....

 

[cinmell]

I have a question that I thought maybe someone else here might be able to help with. For the past 10 years I've had problems wtih dehydration (dry mouth, eyes, and muscle pain from dehydration) on a day-to-day basis. After I realized that this was an ongoing problem I just upped my water intake. I drink about 40-60 ozs of water at work and then another bottle or two at home at night. I've just learned to live with it all.

However, last Saturday I woke up to my left eye tearing horribly, by the end of the weekend my eye was also swollen and it hurt pretty bad. It felt like the film over my eye was peeling! Monday I went to an eye doctor (not my usual one b/c they don't take my medical insurance, only my vision insurance) they checked my eye and told me that my problem was that my eyes were EXTREMELY dry. He equated it to having chapped hands, only I have chapped eyes. He mentioned that it could be related to my thyroid problem.

Tuesday I called my Endocrinologist to let her know what was going on. I left a message anyway. Today I got a call back and she wants to see me on Monday.

Has anyone else had something like this? If so was it related to your thyroid? Years ago when I first started complaining to my PCP she sent me for bloodwork to check for Sojrens, but that was negative she said. I just want to know what is going on because after 4 days on the drops they gave me my eyes are still not feeling better.

TIA!!

Well, I was diagnosed with Graves Disease February 2008. My GYN noticed that my glands felt big at my annual appointment last January and sent me for bloodwork. She called me when she received the results and said she wanted me to go to and Endocrinologist asap b/c my numbers were very high. She was able to get me in the next day, otherwise I would had to have waited a couple of months.

Anyway, my numbers were excessively high according to the Endo, hyperthyriodism. The Endo asked if anyone ever commented on my eyes or told me I have big eyes. He mentioned how graves can affect the eye. After being on the meda for a few months there was no difference in my eyes. I started using eyedrops during the day and and ointment at night to protect the eyes. The doctor said is very important to protect the eyes. He said either use ointment at night or an eye patch to protect the eye from dust getting in them at night when you sleep. I went with the ointment. Graves can affect the muscles behind the eye which causes the eye or eyes to look like they are pushed out almost or the lids don't close all the way b/c it causes inflammation around the eye. My right eye does look bigger and is dry and I can see bits of light when my eye is closed b/c it's not closing all the way.

In September I saw my eye doctor but she referred me to an Ocuplastics Surgeon b/c I guess they specialize in this area. The doctor said I had a mild case and that the eye would go back to normal when my numbers were worked out.

However, I was taken off my thyroid meds 2 weeks ago b/c the numbers finally started to come down in October and have been normal for a bit now but my eye is still big I guess you could say. It gets dry, still tears and if I don't use the ointment before I go to bed I get the blurry feeling in the morning, almost like there is a film over the eye. My eye is itchy and dry so I carry drops with me all the time now. I have a follow up appt. with the Ocuplastics Surgeon in 2 weeks. I'm a little concerned b/c even though the thyroid issue seems be calm now and under control, I don't notice any difference in the eye and I have had several people comment on my eye!

 

[Christine]

cinmell,

It is my understanding that with Grave's, even if you get the thyroid numbers regulated, you can still have eye problems. As I'm sure you know, Grave's is a specific autoimmune disorder and, while getting the thyroid numbers correct, the Grave's is still there doing its damage.

For instance, I am supposed to be kept hyperthyroid all the time due to thyroid cancer. My doctor told me that I will never have the eye issues because they aren't caused specifically by hyperthyroidism, only by having Grave's. I'm not really sure how it works but I swear someone told me this.

I do have terrible dry eyes that started about 6 years ago (my thyroid cancer was 14 years ago). I had all sorts of test for autoimmune but everything was ruled out. I simply have "dry eye" with ocular rosacea. I use Restasis and it has me almost normal. I have a hard time driving without some sort of covering over my eyes if I have the heater or AC on in the car. I just can't do it. But other than that, I'm pretty good. I will have bouts of severe itching or swelling but I can get it under control by upping the Restasis for a few days.

When it first happened to me, though, it was just sooooo bad. My eyes were so bad that my eyelids would sort of droop because they would get stuck and not open fully. Gosh, it was painful.

 

[Christine]

I feel like crap. Tired, bones hurt, cold, vision problems, etc. I know the thyroid levels do a whopper to me, but this is more than normal. I also have fibro, IBS, and cervical disc disease. I am a dr's nightmare. My most recent problem is lower left quadrant pain. Thought it was a kidney stone but nothing showed. Nothing showed for diverticulitis either. So they are treating with just pain pills which I hate. I have Donnatal also for my stomach as the pain is causing nausea and I went 4 days without food.

I know it's not proven yet but they are finding that chronic low Vitamin D is the cause for chronic pain and even suspect that it might be *the* factor in fibromyalgia in some patients.

Have you seriously looked into getting those levels up?

I also wanted to add, have you visited the Thyroid Issues board on www.healthboards.com? They have some very knowledgeable folks over there who have pretty much seen it all. You might want to go over there and read and post your story/lab values, etc. if you haven't already. I don't hang out there much at all because there are very few thyroid cancer postings, but they definitely have some interesting things going on.