The THYROID Thread

[Christine]

Tests came back 99% for Down's. I'm pretty heartbroken. My DH is unfazed though. Not much rattles him.

mrsklamc, I'm sorry that this didn't come out the way you hoped. I was really pulling for some sort of fluke. I guess you will have further tests to get something definitive?

 

[mrsklamc]

mrsklamc, I'm sorry that this didn't come out the way you hoped. I was really pulling for some sort of fluke. I guess you will have further tests to get something definitive?

Probably. I do have some hope though:

http://online.wsj.com/article/SB10001424127887324883604578398791568615644.html

Even though it is statistically unlikely, I'm still holding out hope we're in that margin of error. Never prayed so much for anything in my life.

We'll decide on further testing after we speak with the Maternal Fetal Med specialist again.

 

[desamnik]

for 3 years and being on meds for a year or so, I asked the endocronologist what causes this, she says "stress", when I asked my PCP (which I've since dumped) why I was losing so much hair, she says "stress".

I live a pretty easy life, don't have to work, easy going husband, not in debit etc,,,,don't consider myself to be stressed out.

Well, my latest blood work now shows that I have Hashimotos Disease. I'm guessing if I ask why I have this, the answer will be "stress". I really dislike that answer for everything!! Seems like a copout to me

Just wanted to vent a bit, thanks for listening.

 

[Christine]

for 3 years and being on meds for a year or so, I asked the endocronologist what causes this, she says "stress", when I asked my PCP (which I've since dumped) why I was losing so much hair, she says "stress".

I live a pretty easy life, don't have to work, easy going husband, not in debit etc,,,,don't consider myself to be stressed out.

Well, my latest blood work now shows that I have Hashimotos Disease. I'm guessing if I ask why I have this, the answer will be "stress". I really dislike that answer for everything!! Seems like a copout to me

Just wanted to vent a bit, thanks for listening.

You know, sometimes I really dislike doctors. That is such a ridiculous answer. While stress can exacerbate conditions and extreme stress can certainly cause your body harm, sometimes organs just fail. Hashimotos is an autoimmune disorder and you are genetically predisposed to that. There are millions of people with thyroid disorders of all sorts and I really don't believe that everyone is "stressed." I do believe that genetics and environmental factors (general diet, overall health, etc) play a bigger factor then just being a little whigged out here and there.

 

[desamnik]

I appreciate your response, I agree, sometimes I just don't like them either...

Of course when I see her again, I'll just look confrontantional if I say, so....I guess my hypo thyroid and hair loss may not have been caused by "stress" after all,

Well, maybe they will take me a little more seriously now, I don't know....

 

[angwill]

Probably. I do have some hope though:

http://online.wsj.com/article/SB10001424127887324883604578398791568615644.html

Even though it is statistically unlikely, I'm still holding out hope we're in that margin of error. Never prayed so much for anything in my life.

We'll decide on further testing after we speak with the Maternal Fetal Med specialist again.

You and your baby are in my prayers too.

Ang

 

[angwill]

angwill - I am so glad you are home from the hosp and that you seem to be doing really well. So good you didnt have much bleeding.

The voice will come back in time. Just dont push it.

My voice is still not good at times but I had so much surgical trauma and damage. Glad you didnt read this whole thread or you would have seen that I almost died during my surgery and was in a coma. And my dr. does over 100 of these a year! But my ca was pretty huge and spread.

Well onto the next step for you. The wonderful diet. I dont know if you are going the withdrawl route (cant help you there as I had thyrogen or the thyrogen route).

I think we will all tell you to do the diet.

Its a good time to do it as there are many fresh fruits and vegetables you can pick from.

Micayla has a lot of yummy ideas.

Christine has one of her recipes in the LID cookbook.

My LID was really restrictive. It was a combination of the thyca lid, the nih diet and my radiation oncologists own diet.

They say most people lose 10 lbs. on the diet.

So now you wait to see what type you have and how much rai you are getting, but in the meantime rest up!

So glad you are home. Take it easy, One day at a time.

Well I realize I can not raise my voice at all. I guess it is good there is no need to shout anyway. I told the doctor to be careful with the voice since I have to sing DH to sleep at night. lol It doesn't seem too bad now but a bit lower.

I am glad I did not read of going into a coma because I was majorly stressed out and begging for the chicken exit at the operating room door. At least I made them laugh. lol

My doctors do the withdawl route not thyrogen. I did ask about it though. I will wait till my levels go down to start the diet and I will make a money bet I gain and not lose since my motabolism is screwed up big time. How many weeks of diet is normal? I never was one to use salt while cooking or anything but it is in everything anyway.

I am glad after all your trauma things turned out well for you.

Ang

 

[luvmarypoppins]

for 3 years and being on meds for a year or so, I asked the endocronologist what causes this, she says "stress", when I asked my PCP (which I've since dumped) why I was losing so much hair, she says "stress".

I live a pretty easy life, don't have to work, easy going husband, not in debit etc,,,,don't consider myself to be stressed out.

Well, my latest blood work now shows that I have Hashimotos Disease. I'm guessing if I ask why I have this, the answer will be "stress". I really dislike that answer for everything!! Seems like a copout to me

Just wanted to vent a bit, thanks for listening.

So sorry you had to deal with all of that. My pcp was a totally poor diagnostician too. He just couldnt put all the puzzle pieces together about me either. He said its was good I was losing weight without dieting, that my itchy skin was an allergy (It was actually a bad b12 deficiency etc.), Even in the hospital he never had a specialist look at the one lump in my neck. Guess if he did he would have actually figured out I had cancer etc.

Well glad you got on the right track with the blood tests. I am seeing we have to advocate more for ourselves these days with healthcare.

 

[luvmarypoppins]

angwill - christine and micayla can tell you about withdrawl and anyone else who went that route.

The diet should be 2 weeks. The others were allowed to have things that I was not like regular water. I could only have distilled.

My advice is to eat what you really love before the diet, especially anything that is carbs or dairy because they are really restricted on the diet. I missed yogurt so much etc.

My normal lid diet was - banana for breakfast. A few times I gave in to the oatmeal. I dont really like it so I drowned it with pure maple syrup, walnuts, pecans, blueberries etc. I cooked it in the crockpot with cinnamon and apples too.

I liked to mix things up on the plate for color. If I was lazy I used the steamfresh no sauced vegetables.

My treat were the little bags of craisins, popcorn in the microwave in a brown paper bag, and matzoh (Thank God for living in NY - readily available) with natural peanut butter and nuts.

I also used no yolk noodles alot because I was really not allowed to have regular pasta.

Its not as bad as it sounds. If you like cooking or have a wonderful Prince Charming like Micaylas dh who actually cooked for her. My dh would burn water

For chinese food I just grilled chicken breast with orange marmalade and had the basmati rice (only one allowed for me) and some steamfresh veg.

So also if you like shrimp, fish etc, eat it now.

My ds loved me not having my voice. I had to clap for everyone if I needed something etc.

I am just thankful I am still alive. They said most people dont live after what happened to me. Also because of the cancer my surgeon had to cut my accessory nerve so I cant feel up to my L ear and I really cant use my L arm well from the elbow up but its all good. You just adjust. Also one of my vocal chords got bruised and then I had even more surgical trauma to my throat after I had to have an emergency bowel resection like a few days before I was suppose to start the diet, so there went the voice again. It still is not good at times. I have had many scopes and tests. It looks good on the inside they say but it gets tired alot.

So rest up and dont push the voice.

 

[Christine]

My doctors do the withdawl route not thyrogen. I did ask about it though. I will wait till my levels go down to start the diet and I will make a money bet I gain and not lose since my motabolism is screwed up big time. How many weeks of diet is normal? I never was one to use salt while cooking or anything but it is in everything anyway.

Ang

Since I had thyroid cancer in the "dark ages" of the 1990s, there was no Thyrogen and I did withdrawal scans about 4 times. The first one is generally not too bad because you actually do have some working thyroid remnant in your body.

I didn't do the diet until later years because it wasn't invented when I was first treated. All they told me was to stay away from fast food for a week or so.

The diet usually goes for 2 weeks--the first week is practice and the second week is for "real" at least that's what one of the thyca.org doctors said. It takes about a week for the excess iodine to leave your body so 2 weeks is a bit overkill. I was told that if you are REALLY good about the diet, that one week is sufficient.

I haven't had to do it for awhile so luvmarrypoppins will have better guidance for you. There is also a LID cookbookd on the Thyca website so you can get some ideas.

If you can, make up a bunch of food now and freeze it. You will not feel like cooking during the time that you need to be on the diet since you will be truly hypo.

Every time I went hypo, I gained about 10 pounds but then lost it quickly once my meds were stabilized. I never felt like it was true "fat" or weight that I gained but more like fluid. The only exception was on the LID and then I did not gain weight at all. When I did the LID while using Thyrogen, then I lost about 6 lbs.

 

[SingingMom]

Since I had thyroid cancer in the "dark ages" of the 1990s, there was no Thyrogen and I did withdrawal scans about 4 times. The first one is generally not too bad because you actually do have some working thyroid remnant in your body.

I didn't do the diet until later years because it wasn't invented when I was first treated. All they told me was to stay away from fast food for a week or so.

The diet usually goes for 2 weeks--the first week is practice and the second week is for "real" at least that's what one of the thyca.org doctors said. It takes about a week for the excess iodine to leave your body so 2 weeks is a bit overkill. I was told that if you are REALLY good about the diet, that one week is sufficient.

I haven't had to do it for awhile so luvmarrypoppins will have better guidance for you. There is also a LID cookbookd on the Thyca website so you can get some ideas.

If you can, make up a bunch of food now and freeze it. You will not feel like cooking during the time that you need to be on the diet since you will be truly hypo.

Every time I went hypo, I gained about 10 pounds but then lost it quickly once my meds were stabilized. I never felt like it was true "fat" or weight that I gained but more like fluid. The only exception was on the LID and then I did not gain weight at all. When I did the LID while using Thyrogen, then I lost about 6 lbs.

I too was treated in the dark ages. ;-)

The withdrawal for me was worse than anything. The aches and pains in my legs were horrible. If you do have this, know it is only temporary!!

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

 

[mrsklamc]

Count me in as 'the withdrawal was the worst part.'

The only instructions for me were the ones in the thyca cookbook. I had to do it for two weeks before and a week after, and then another week when someone did the wrong lab (tsh instead of thyroglobulin.)

If I were you I would push back on the thyrogen issue- tell them it's your understanding that it's common practice now and why specifically do they think you should do withdrawal.

Of course last I checked it was like $900 so that's an issue too.

 

[desamnik]

I have a couple of questions that maybe someone here may know the answer to.

I've been on thryoid meds for about a year, I've been on Armour Thyroid for four months.

My latest blood work showed, that a, i am taking too much, b, i have Hashimotos, there was one other test done, not sure what it was, but those numbers were off also.

So, I guess I'm confused as to why I still have such bad blood work results if I've been taking my medicine?

and the other question I have is does the Armour help with all the other symptoms of Hashimotos? Some things i notice are fatigue, trouble swallowing, hair loss, pain in hands, legs and arms, and forgetfullness.

Thank you for any information.

 

[angwill]

I am already in withdawl. I was hypothyroid and hoshimotos before they took out the thyroid and my thyroid was not functioning at all without the meds anyway. The day of surgery they took me off meds and said some people take months to get their THS up to at least 30 said the endo and 50 said the surgeon. That is when I would start the diet and then have the RAI. I am already feeling dead to the world. I had a hard time sleeping more than 4 hours before the surgery and now I can barely function with 10 hours sleep and I still keep wanting to curl up in bed. This is after 5 day. I get cramping in my abdomin as well. I go for follow up visits the 15th with the endo and 16th with the surgeon. I will mention the thyrogen to the endo when I see him but he is the one who said they don't do it and also the one who said no diet is needed but if I wanted to do it I could. I wish I lived in a more populated area as it is I drive almost an hour to see the endo and he is the only one who knows thyroid issues. I am trusting though since my surgeon was so great and he refered me to the endo. I am also grateful that they even take cash payers on a payment plan since no others here will.

Does anyone know if individual packets of flavored oatmeal are allowed or just plain container oatmeal? I will have to get some if packets are not allowed. I did order some Matzos on the internet since there are none in any store around us. I got some natural peanut butter and different jelly. We always have lots of fruit and veges so that will be easy. I wonder if I can just sleep for two weeks and not eat? lol

As for the weight I went into the hospital 10lbs less than I came out and it had to be the IV fluids. I wanted to cry because I was so careful with calories and carbs when ordering at the hospital. I really hope they this motabolizm issue fixes itself when my levels are regulated.

Thanks for all the advice and if you can think of anything else foods or how you made it through the withdrawl I would appreciate it.

Ang

 

[luvmarypoppins]

ang - make sure the matzoh is unsalted

Do you have a bread machine? I think Micayla made bread? She could help on that one. Then you could have pb and j and maybe chicken etc. like an actual sand. hmm, banana cinnamon toast?

Also I was allowed to have sorbet but check the labels for the allowed ingredients. I think I found a hagen das one that was ok

Nothing with carragean so read your labels

I had a dietician work with me. Thought it was covered under my ins. I didnt seek her out. The hospital said I had to use her. That cost like $112 but worth it. I was always calling her up and asking questions.

Bread products. She told me nothing with packages because it usually contains a bromated agent that is used in processing? Then she said if I found unsalted crackers I could have them? I never did find them with all the right ingredients. I didnt understand this.

So that is with the oatmeal. She told me to use the quaker in the can but in the crockpot I used the steel cut oats because they cook better etc.

Just mix it up so it doesnt get boring. Like you dont want to eat a salad every day for lunch etc. I made a veg/chicken soup with the steam fresh veg and no yolk noodles. I made stock from cooking a whole chicken etc.

At the end I was feeling tired and sick so I think 2 days for lunch I just dipped carrot sticks and celery in the pb.

I never cheated on the diet etc. because I wanted to give myself the best chance of having the rai work because they knew I had a rare and aggressive variant of pap and they already told me the one guy who had it had his come back in 3 months post rai etc.

I have seen some people say beans are allowed if you soak them yourself etc. I was told no beans whatsoever. Add ruhbarb and I think kale to that too? No, NO. No potato skins either.

I know Micayla found a no salt ketchup.
If you like nuts you can snack on unsalted almonds, pecans,walnuts etc.
So you could make a salad with chicken, walnuts, raspberries etc.

I agree with Christine to maybe make yourself stuff now if you know you are getting tired etc. and freeze it. Also use the crockpot as your friend too.
You could even make applesauce in it etc.

I made a beef stew type thing and that lasted for a couple of meals.

Like my mock spaghetti would be the no yolk noodles, the 3 ounces of beef, fresh tomatoes and peppers and onion if you wanted. You could add fresh basil.

You could make a stuffed pepper with the beef (3 ounces), the basmati rice and maybe corn?

I did the maple pork chop, sweet potato and peas or green beans. I like different colors.

Maybe write down a little menu plan. That way if you are too sick to cook then maybe someone could cook it for you too.

If you like mexican food you could do grilled lime chicken with cilantro, corn etc. and the rice. Make a homemade salsa and use the matzoh to dip.

Cucumbers and fresh dill - close as possible to pickles etc.

Take your tastes into consideration too. Bland versus spicy etc.

Micayla - you need to share your favorite recipes too. Prayers for you because you know we gotta pray without ceasing!

 

[Christine]

Hopefully it won't take you too long to get to a high TSH. I was at 140 after 6 weeks!!! They wanted it to be sky high so there was no letting me go in with a TSH of 50. The higher your TSH, the better the RAI works.

 

[angwill]

Oh great and the endo who is the specialist is saying to do RAI at 30 with no diet. I am losing faith. Maybe I will be really high when I see him in two weeks and then talk him into giving me two more to do the diet.

The Motzoh I got does not say unsalted on the box but it shows 0 sodium and the ingredients say only wheat flour and water. They better be ok because they were not cheap. lol

I don't have a bread machine not have I ever made bread. Unfortunately, I also have a husband that burns water. lol

I think I can make it a couple weeks without sorbet but will look for the hagen das.

Thank God I have you Marry Poppins because after I pay the specialists in two weeks I will not have money left for a dietician.

I will look for the steel cooked oats for oatmeal then. Do you know the croc pot recipie?

I wish I was more creative in the kitchen like you. I am going to be so sick of the diet by the end of it. I hate to admit it but I am one of the worlds pickiest eaters to the point I would rather starve than get sick from eating something that I don't like. I have a feeling I am just going to have to suck it up and eat mostly fruit and veges all week. I will have my motzoh and unsalted peanut butter and jelly and oatmeal if I can't eat any more of the fresh stuff.

Thanks so much for all the tips. I really want to do this right because I do not want to have to ever do it again.

I am sorry to hear you had a rare form of pap. How long ago was it and has it stayed away?

 

[angwill]

With the RAI are you supposed to put vinyl over matresses and pillows? Plastic baggies over everything? I have no clue what to do during that since we only have one bathroom it could be an issue.

Thanks for advice there too.

Ang

 

[luvmarypoppins]

ang - hmm, some rai stuff for your reading enjoyment.

Do you live more than 1 hour from the hosp where you are getting the rai. They say the car ride home shouldnt be more than an hour and you have to sit in the back.

Make sure they give you some kind of anti emetic/aniti nausea pill before you swallow the rai

rai precautions - I think the first day is 10 to 12 feet away from someone? Then the next days are less

You need your own non disposable plate, cup bowl,spoon and utensils which you should wash yourself after each meal.

Sorry going a little overboard but I was told better safer than sorry.

See in your signature. If you have pets they have to go for the week. Pet hair can get the rai in it etc.

You cannot walk around your carpet with bare feet. Socks at all time etc.

If you are sharing a remote with your dh or the computer etc electronics. You should wear rubber gloves I was told as the sweat goes on it.

I have read some people say they wear their junkiest clothes all week and then throw them out.

Honestly I kept all my stuff and just washed it at the end. Just strip your bed and wash everything. I didnt do a plastic sheet. However in the hospital I had one I think for the overnight stay. The whole room was covered in blue plastic.

If you are sharing only one bathroom you still have to double flush the toilet each time and clean it for any spills etc. I think they said let the shower run for a while after you use it?? Of course dont share soap etc.

Your dh will be banished to the couch for a week.

I was told no cooking and prepping food except for yourself the week of rai because you shouldnt be in close contact with someone else etc.

It seems overwhelming but if you know stuff beforehand and you can ask your own dr questions too its ok.

Also you feel so sick after the rai you dont really want to eat anything anyway. Christine said its radiation gastritis. I think I remember having to run to the bathroom every time I ate something and feeling queasy.

Its just funny how stuff varies from drs. to drs. etc. Mine are so super strict about everything. I know they said they were even fined by the something dept. for not being radiation compliant with something?

Micayla chime in on this - sodium on label is not the same as no salt right? Sorry brain fog here. You need to look for no salt right?

ang - ask us any question you want. Hang in there.

 

[angwill]

ang - hmm, some rai stuff for your reading enjoyment.

Do you live more than 1 hour from the hosp where you are getting the rai. They say the car ride home shouldnt be more than an hour and you have to sit in the back.

Make sure they give you some kind of anti emetic/aniti nausea pill before you swallow the rai

rai precautions - I think the first day is 10 to 12 feet away from someone? Then the next days are less

You need your own non disposable plate, cup bowl,spoon and utensils which you should wash yourself after each meal.

Sorry going a little overboard but I was told better safer than sorry.

See in your signature. If you have pets they have to go for the week. Pet hair can get the rai in it etc.

You cannot walk around your carpet with bare feet. Socks at all time etc.

If you are sharing a remote with your dh or the computer etc electronics. You should wear rubber gloves I was told as the sweat goes on it.

I have read some people say they wear their junkiest clothes all week and then throw them out.

Honestly I kept all my stuff and just washed it at the end. Just strip your bed and wash everything. I didnt do a plastic sheet. However in the hospital I had one I think for the overnight stay. The whole room was covered in blue plastic.

If you are sharing only one bathroom you still have to double flush the toilet each time and clean it for any spills etc. I think they said let the shower run for a while after you use it?? Of course dont share soap etc.

Your dh will be banished to the couch for a week.

I was told no cooking and prepping food except for yourself the week of rai because you shouldnt be in close contact with someone else etc.

It seems overwhelming but if you know stuff beforehand and you can ask your own dr questions too its ok.

Also you feel so sick after the rai you dont really want to eat anything anyway. Christine said its radiation gastritis. I think I remember having to run to the bathroom every time I ate something and feeling queasy.

Its just funny how stuff varies from drs. to drs. etc. Mine are so super strict about everything. I know they said they were even fined by the something dept. for not being radiation compliant with something?

Micayla chime in on this - sodium on label is not the same as no salt right? Sorry brain fog here. You need to look for no salt right?

ang - ask us any question you want. Hang in there.

Thank you for all this great info. I looked ups stuff but everyone seems to do it different and I just want to do it the best way.

I am going to miss my dog the most. She is who I cuddle with when I don't feel good. She will be stuck at the vet for a week it seems.

I was going to drive myself home is that no no? I dont' want to expose anyone and we are about an hour from the hospital unless we drive super fast and risk a ticket. There is nowhere closer.

Here I was thinking disposable plates and utensils would be best and easiest. Wearing socks is going to be hard and I will be kicking them off in my sleep. lol

The rest seems doable. Oddly enough my sugeons nurse suggested going to stay with an elderly relative, I have none around me. Or she said go to a hotel and ask for a room at the end of a hall away from everyone. Mostly because I only have the one bathroom and I have an 18 year old son that she said I should not be around. There really should be a standard for how they do this stuff and rules to follow. Oh and a friend of mine got me two hospital gowns to use during RAI and then she said burn them after. I really need to keep researching this stuff before the time comes. I want this all gone for good and forever no matter what I have to do to accomplish that.