The THYROID Thread

[DisneyMissy318]

Thanks for the well wishes guys!

If you will allow me to wax poetic for a minute - it makes me so sad that my child, you know - my baby, will have to face the trials and pain that I read about here from you - for the rest of her life. I'm sure at 10 - and the fact that she has had a difficient thyroid since day 1 - she doesn't know what "normal" feels like. She doesn't complain - she does what she can do - and we don't push her. Of course as her Mom, I'm here to support her in anyway I can - to be her advocate at the doctor's visits - to educate myself so I know what questions to ask. Thanks to you here for helping me be the best Mom for Madison that I can be.

Hugs to you all.

DisneyMissy

 

[teacups]

My doctor does not recommend the generic. She said that every time you get it, it comes from someplace different and therefore the dosages can differ. She says that she never recommends it.

Good to know. I will talk to my pharmacist at next refil and try the real stuff. Woudlnt it be nice it that were the magic I need?? Thanks.

 

[teacups]

Thanks for the well wishes guys!

If you will allow me to wax poetic for a minute - it makes me so sad that my child, you know - my baby, will have to face the trials and pain that I read about here from you - for the rest of her life. I'm sure at 10 - and the fact that she has had a difficient thyroid since day 1 - she doesn't know what "normal" feels like. She doesn't complain - she does what she can do - and we don't push her. Of course as her Mom, I'm here to support her in anyway I can - to be her advocate at the doctor's visits - to educate myself so I know what questions to ask. Thanks to you here for helping me be the best Mom for Madison that I can be.

Hugs to you all.

DisneyMissy

I was 13 when I was DX'd and had no support from my parents. I went thru Heck. Good for you and your baby that you are standing by her and will help her and just be there in her cheering section!

 

[KAMLEM]

Good to know. I will talk to my pharmacist at next refil and try the real stuff. Woudlnt it be nice it that were the magic I need?? Thanks.

I hope that this makes a difference for you. I know how badly you want to just feel good again, I feel the same.

 

[kathleena]

One question: do you all think Syntroid and generic Levothyroxine is similar these days? My doc says it is and not to spend the money on Synthroid. Many years ago it was taboo to take generic. Any opinions?

Well, you could read this recent article about a letter the FDA has sent to the manufacturer that is pretty scathing:

http://www.thyroid-info.com/articles/synthroidproblems.htm

But if you are looking for opinions - Synthroid has manufacturing problems and could vary in dose. That causes issues for some people. This isn't to say that ALL Synthroid doses are wrong, but clearly there is evidence that it is hard to manufacture a stable amount of Synthroid into a pill.

On the other hand Armour comes from different animals and just like humans have different levels of thyroid hormone, so do the animals. The issue with Armour is the same as the issue with Synthroid - you can't always rely on the dose. This is why the use of Armour is so low in the American medical community - they feel the Synthroid is more reliable than the Armour. (MDs as opposed to holistic or naturopaths)

So for me - I would go with the one that feels best to me.

 

[DisneyMissy318]

Just a quick update. We went Saturday for Madison's blood draw. She had a meltdown (needle-phobia) - the last draw was 7 weeks ago and she did wonderfully - this time she worked herself up into a tizzy... anyway - the nurse was very patient and we finally got the tubes necessary for the tests.

Her TSH was 118 7 weeks ago - and is now 15.7!!!!!! Even though it's still outside of range - it is so much closer to 2 than 118!!

T3 - 164
T4 - 9.48
T3 Uptake - 28

Overall - not too shabby!!

We meet with the Pediatric Endrocrinologist tomorrow - so I'll be glad to show him these results at our first visit.

I read everything you write - and am much appreciative for this thread and those of you who share so much of yourselves here.

Happy Thanksgiving to you all!

DisneyMissy
Mom2Madi

 

[jennz]

That's great!!! Is she feeling more energetic? I would guess that she is. I'm so so sorry about the needles, poor girl and poor mom. I'm glad you had a patient nurse, that helps a lot.

I hope you like your ped endo! Let us know what s/he says...

Happy Thanksgiving to you too.

 

[pakhowe]

It's been a while since I've posted. I've been reading & keeping up though. I'm glad to have this thread and all the information I've received from it. Thank you all.

I go on Monday for my thyroidectomy. Still don't know if it is cancer or not. Hopefully will know on Monday without having to wait again.

 

[jennz]

Good luck to you on Monday - is it a complete thryoidectomy you're having?

I'll be thinking about you...

 

[frdeb1999]

Good luck Pawhowe

 

[frdeb1999]

So sorry....meant pakhowe! My fingers sometimes have minds of their own!

 

[DisneyMissy318]

Good Morning All...

Wanted to post a note saying that I'll be thinking about Pakhowe today.

Also wanted to update on our appointment with the Ped Endocrinologist on Tuesday. It went well - I was SO glad that I had the blood results from our blood draw to give to them - it enabled them to get an idea of what was going on from the start. I also found out that the ENT who removed Madison's thyroid consulted Dr. Clarke before and during surgery . I was so happy to hear that! Dr. Clarke knew even more than we did about Madison's condition. He told us that most lingual thyroids do not have to be removed - but Madison also had Hashimoto's which caused a goiter - which was growing in size and had to be removed because it was impedeing her airway. So... that was new information that we didn't know.

She was given the once over by a nurse practictioner - with no personality. It was pretty complete - she felt her b**b buds - looked at her "pubby" - under her arms, etc. etc. Madison was MORTIFIED I actually have to close my eyes when I'm helping her with her sports bra in the mornings - so to have this complete stranger - who was very clinical - taking a look was off the chart for her!

Based on her bloodwork - they raised her dosage to 125mcg (up from 112 7 weeks ago). The really good news is that he won't see her again for three months - and he said we don't need to do blood until that visit! Madison was pretty happy - although she realizes we have to do the draw at UVA instead of "my" hospital. When the time gets closer - I'll ask Dr. Clarke to put his order in over here if I think it's going to be an issue.

One thing that I thought was odd was that both the NP and Dr. Clarke said that Madison's weight gain cannot be attributed to the thyroid or the "lack of" and that she needs to lose weight. OK - she gained 20 pounds in the 6 weeks after surgery - she had a thyroid, while it wasn't working well, it was working - then after it was removed - she immediately gained weight. But the comments made were along the lines if you are waiting for the thyroid replacement to aid in losing weight it's not going to happen - she (Madi) just needs to get moving. OK - again - its about all she has been able to do to get to school in the morning and she's compeltely worn out by the time she gets home, it's a little hard to make her run on the treadmill! (Sorry for my little rant.)

I hope everyone had a wonderful Thanksgiving - we are off to Disney in just three short days! (I bet Madi will get some excercise there!)

Happy Holidays All!

DisneyMissy
Mom2Madi

 

[jennz]

Great news!! I'm happy for you both.

I had Hashimoto's too, they found it when they took out my thyroid as well.

As far as the weight gain I have to say that's a bunch of crap. That's my professional opinion. When I was off my meds (which = no thyroid) I gained weight and hardly ate anything - seriously, I had no appetite. I would have been angry, but it's one of those things that I guess you say "whatever" but know that it's not true. 20 #s in 6 weeks - that's a LOT, especially as a % of her weight and it's got to be due to that.

 

[rie'smom]

I agree with Jenz. The doc and the NP are full of it if they're saying that the weight gain is not due to thyroid issues.
When my original doc left, the new guy switched me to Synthroid .25. I gained 13# in 1 month!! The new doctor that I found switched me back to Armour and I lost the weight because I was back on the right dosage.

 

[pakhowe]

Thank you all for your wishes. I am home & only had 1/2 my thyroid removed. The initial biopsy came back benign & we are waiting to hear on the frozen cross section that was sent for further testing. I am sore and tired but doing well. Unfortunately for my DH I can talk just fine, not sore at all to talk. I will go next week for a follow up and find out if I have to take any replacement tyroid meds. Until then I am out of work for a while. I still have a nodule on the left side but it was too small to biopsy & DR says I will have to have ultrasounds to keep an eye on it.

After surgery is coughing up normal? I feel like there is stuff caught in my throat & I keep coughing up stuff. It hurts to cough & I'm wondering if it is normal after anesthesia?

 

[jennz]

Thanks for letting us know you're doing okay!

I don't remember coughing up afterwards...maybe it is the anethesia.

I'd have to say I'm pretty sure your DH isn't minding you talking, he's just glad you're still there and able to!!

That's the same thing they did with me, took out 1/2 the first time and my biopsy came back benign. It did come back positive for cancer when they sent it out though.

 

[KAMLEM]

That's the same thing they did with me, took out 1/2 the first time and my biopsy came back benign. It did come back positive for cancer when they sent it out though.

That's exactly what happened to me, too. I thought everything was ok until I went for my follow up after the surgery.

I don't remember coughing anything up, either. Maybe you should call your doctor if it continues.

 

[pakhowe]

That's exactly what happened to me, too. I thought everything was ok until I went for my follow up after the surgery.

I don't remember coughing anything up, either. Maybe you should call your doctor if it continues.

I'm feeling better now. The coughing has stopped. I think I have been trying to do too much too soon. I'm glad the Dr gave me 2 weeks off. So when you got the results back did you have to go back in and have everything removed? The Dr said there is less than a 1% chance of it coming back malignant but I want to know what happens next just to be prepared. How are you both doing now? Has it been a while and are your thyroid levels normal on the replacement meds? Thanks again for all the advice

 

[KAMLEM]

I had to go back in and have the rest of it removed. They did not end up finding anything, but I'm still glad I did it because otherwise it would always be hanging over me. I had that done on 6/18. After that I was scheduled for the radioactive iodine treatment, but when they did the body scan they did not find any traces of thyroid tissue left so they did not have to do the treatment. I was thrilled, but I had done the low iodine diet for nothing!

Since I had to go off the synthroid in preparation for the RAI treatment, it wasn't until mid-August that I got back on it. It is now December and we are still trying to find the right dosage. We discovered that I could not increase my dosage too much at one time or I would get all the symptoms of being hyper and feel awful. I am now up to 137 mcg and I think this will do the trick. At 125 mcg my tsh was 4.9, but I still felt awful. For me, it needs to be between 1 and 2. I have to go back for blood work in about 4 more weeks.

 

[MrsKreamer]

Hi! I was diagnosed with Hashimoto's Thyroiditis. We finally just got my levels in the normal range(after a year of continually increasing my synthroid). I am still a little lethargic, and my memory is horrible. I am going to a Rheumatologist in 2 weeks. I have been having joint pain and my Endo said Hashimoto's sometimes piggy-backs with other Auto-immune disorders. Luckily I have already tested negative for Lupus.