The THYROID Thread

squeegee said:

I've started the withdrawal process - am on cytomel until at 10th, when I stop it all. That's also the day I start the LID. It's the day after DD's birthday, so I get to enjoy pizza and cake, at least. Lol.

PT has been helping immensely. I think I've got two or three weeks to go, and that's gonna be it, though. I can't afford to extend it any further. Fortunately, though, the pain has abated to where I'd call it "livable," even if all improvement ceases.

Doc said he's expecting another 150 on the RAI, same as las time. I'm hoping the side effects aren't worse this time around. Last time, I had minor salivary pain/swelling, mild nausea, and lost the ability to taste salt for a couple weeks. I suppose I can live with that again, but I have my fingers crossed.

Sorry to hear you're not feeling well. . I can't imagine puking with a neck dissection. Three months out, and I still wince when I sneeze! I hope you feel better soon.

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luvmarypoppins said:

macraven - how are you feeling too? I know you will glad to have your surgery done and behind you too. Waiting is hard for sure! Wishing you all the best too.

I am feeling miserable. I was dealing with some gastro issues sat. night. Lets just say its not fun being sick to your stomach with a neck dissection and add to that I now have gotten a sinus infection probably and my throat is bothering me. I have been trying to fight it off since last week but might go to urgent care this week if it gets worse. I am grumpy when I dont feel good for sure.

Check in when you can everyone.

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luvmarypoppins said:

macraven - yeah I am too much like a mom, lol! I know I commented before that my friend did have the salivary glands both removed and he drinks alot of water to speak.

I think we all look up to Christine the most! She is the founder of this thread. Christine hmm, since you like books I will say I think of you as sage worthy! Was gonna say Gandolf from Lord of The Rings, but he is a guy. Hmm,need to think of a sweet lady. I am not into Jane Austen, so I just dont know.

squeegee - What do you like to eat on the lid? I cant imagine having to cook and do withdrawl as I read everyones horror stories dong that here.
Had all the symptoms after rai that you mentioned except the salt thing. I could taste everything after but not as good as before. It took a couple weeks.

Yes, puking and coughing is the worst for me because its actually more than the dissection I had since the 2nd surgeon told my husband he chopped the whole inside of my L neck up to save me and I would be in terrible pain the rest of my life. yup, so true, so I dont know exactly whats pulling and stressing in there during my sick times but it does not feel good at all!

Well so far we are thinking of a wdw trip May 28-June 2nd I think. I have to confirm with dh and see his schedule. I did see we can get the Swan for most of dh ff miles so that will be good. I also tentatively booked a BOG lunch because we never ate there for lunch and I know dh has been asking for that but I think 11:35 was the only time they had, a little early but I took it.

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Christine said:

Oh, I feel like I've been a bad mom lately!!! I've been so busy at work that I know I neglect this thread!!

LMP--I just haven't read any really good books lately. I've got a few I'm waiting for that are supposed to be good. "Being Mortal" is one and I can't wait to get it.

It's been a long time since I had to do the LID. I remember eating a lot of meat and veggies. Nothing else. I think there are better tips out there now. I did lose 6 lbs though!!

I had 150 mci two separate times. The first time I had horrible salivary gland problems, but not the second time. I was told the second time DO NOT do the hard candy/lemon drops. I ate grapes and things that made my salivary gland express "mildly" and that seemed to help. Definitely got the nausea again as well as the taste issues.

Hope everyone else is doing well.

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1Grumpy9 said:

It has been a while since I have checked in on the thread...I wanted to give everyone an update on the news I just got this morning from my Endo. I have been dealing with Hypocalcemia since my surgery (they also had to take my parathyroid). Well, my Endo has been waiting for the injection of the parathyroid hormone to be approved by the FDA. For the last 5 yrs I have been dealing with having Tums by my side and taking a lot of calcium/vitamin D pills.

This takes me to today...my Endo walks in and says, "I have big news...we have approval." The injection of Natpara was approved and we are going to start me on this course of treatment. I had to fill out the paperwork for the medicine and that will be passed along to the insurance company. This is a daily dose that I would inject into my thigh. They will have someone come to the house and explain to me what has to be done for the injection and how to prepare the medicine.

I am excited for this and I hope this helps keep my levels around normal and I don't have the episodes I have now!!!

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StitchesGr8Fan said:

Hi everyone. After a year-long battle to get someone to help me, I finally found an endocrinologist willing to try me on levothyroxine.

My backstory - I was treated for hypothyroidism in my late teens/early twenties. I stopped the medication because I felt good and was a dumb 22 year old who didn't want to have a life-long condition. Since my daughter was born 2 years ago I've felt like crap. It it's more than new-mom exhaustion. I've tried getting lots of sleep, exercise, eating right, vitamins. Nothing has helped. I'm always tired, in pain, can't loose weight no matter how much I exercise and count calories, shedding more hair than usual, constantly sick, the list goes on.

I've had my TSH tested multiple times and it has ranged from 2.3 to 4.8. That is in the normal range so my regular doctor wouldn't treat me. I went to an endocrinologist last week and he ran a bunch more tests. My TSH was 2.3, so no help there. My creatine kinase was high, which I've read is a side effect of low thyroid. I also get chronic hives, which is another effect of low thyroid. My free T4 is in the normal range when tested too.

So this endocrinologist agreed to try me on levothyroxine for 3 months to see how I feel. I think he may just be humoring me, but I have had hypothyroidism before and have lots of symptoms again, so in my gut I feel like that is the problem. He tested me for a bunch of other adrenal and hormonal things and those came back perfectly normal.

Good wishes and stories of people with hypothyroidism but normal TSH and free T4 would be much appreciated! Can't wait to pick up my meds so I can hopefully feel like me again!

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Christine said:

Well, I am not sure if you are going to get those types of stories. Technically, with a TSH of 2.3 and a normal Free T4, you are not hypothyroid. Not even subclinically hypothroid. Some doctors will try the meds if you are on the edge. So if your TSH was closer to 4.0 and your Free T4 was on the lower end of normal, you might be on to something. But maybe this will work for you.

I do have to wonder: have you had other things tested? I would be looking at your ferritin levels (this is the amount of iron you are storing and can be quite low even if you are not anemic). You should also be looking at your Vitamin D levels.

The other thing to factor in is what you are eating. I go up and down with how I eat. I know that during times when I am eating whatever I want, while it tastes great and I love it, I'm sluggish, achy, headachy, tired, and really out of sorts. If I cut out much of the processed food, I feel so much better. I have been eating better now since the end of March and I feel AMAZINGLY great and energetic. I really should try to stick with it. It's important to take serious look at all that especially when your thyroid numbers are quite good.

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StitchesGr8Fan said:

I think the tipping point for the doctor in giving me meds is my chronic hives. In over half the people with chronic hives, levothyroxine treats and prevents outbreaks.

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Christine said:

That's very interesting. I wonder what the cause is for that? I hope it works for you. Hopefully you will some some relief in about 2 weeks time. What dose were you given to start?

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StitchesGr8Fan said:

After doing more digging I found in my test results that my FT4 is barely in the normal range. As strange as it sounds, that makes me feel better, like there is a legit reason to take the levothyroxine. Took my first dose this morning.

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luvmarypoppins said:

squeegee - Enjoy before the lid. So great your dh will cook fr you. My dh is useless in the kitchen. I made all my own food. I made pot roast, chicken soup, of course salads for lunch, and grilled chicken with basmati rice, birsdeye non sauced steam fresh veg. I was getting lazy and the chicken topped with orange marmalade, closest to chinese I can get, Can you tell I live in NY, lol. Also when I was craving italian I had some no yolk egg noodles with beef and fresh tomatoes and peppers and onions.
Someone here told me about the popcorn in a brown bag in the microwave and I did that too. Also I had the usalted matzoh with pb and sometimes jelly and bananas on it. Also carrots with the natural peanut butter. I had dh stir that up because its a little oily. You can do this too. Hang in there.
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