The THYROID Thread

[es45]

Micayla - I forgot to ask how were you feeling from all the swelling? Just curious what you did to resolve it?

I'm wondering the same thing; I hope you are feeling better.

I got the bill accidently for my nuclear scan, this is not for the thyrogen shots or blood tests or rad. onc. visit, I think just the scan itself. It was $1,441.00. Wowsa! I am glad dh policy has no lifetime maximum. We are blessed for sure.

After insurance, my scan will cost $330. My original bill was $1,070. I too, am thankful for insurance and will work as long as I can to continue my coverage.

 

[summy32]

My son had some blood work done recently and it came back that his TSH was 5.8. This was the first time he has ever had these levels tested so I have no idea how long it has been high.

The reason for the blood work is that he is autistic and on several meds so his psychiatrist ordered complete blood work. None of the meds would affect his thyroid. I spoke to a the doctors office today and they told me that his pediatrician just wants to have him retested in 3 months. I thought she would put him on medication.

Some people have told me that thyroid problems can cause moodiness. About 1 1/2 years ago he went from a sweet, calm, happy child to major mood swings, tantrums, anger. He is on Depakote for this and seems to help some, but we still see some moodiness at times. I am now wondering if the thyroid is maybe the cause and we are just covering it with a mood stabalizer. Is 5.8 not high enough to be on medication. Is it normal to not medicate and wait 3 months to retest. I was a little confused by this and asked that the doctor call me to discuss it.

Any advice would be appreciated.

 

[mrsklamc]

Summy32,

I'm sorry you're dealing with that. I don't have answers for you other than to say that I do know people can react very differently to being hypo.

Thank you for asking about the swelling! I'm sorry that I forgot to mention it got better that day. I did lemon drops, and a heat pad (thanks luvmarypoppins!) I taste salt water back there occasionally but mostly it doesn't bother me. My dentist had referred to it as a blocked stensen's gland which doesn't get a lot of hits on google, you get more info if you search for what my dr.friend called it- parotitis.

 

[es45]

My son had some blood work done recently and it came back that his TSH was 5.8. This was the first time he has ever had these levels tested so I have no idea how long it has been high.

The reason for the blood work is that he is autistic and on several meds so his psychiatrist ordered complete blood work. None of the meds would affect his thyroid. I spoke to a the doctors office today and they told me that his pediatrician just wants to have him retested in 3 months. I thought she would put him on medication.

Some people have told me that thyroid problems can cause moodiness. About 1 1/2 years ago he went from a sweet, calm, happy child to major mood swings, tantrums, anger. He is on Depakote for this and seems to help some, but we still see some moodiness at times. I am now wondering if the thyroid is maybe the cause and we are just covering it with a mood stabalizer. Is 5.8 not high enough to be on medication. Is it normal to not medicate and wait 3 months to retest. I was a little confused by this and asked that the doctor call me to discuss it.

Any advice would be appreciated.

It sounds like the doctor is making a good decision to wait and retest rather than adding another medication right now. I would suggest that the testing occur in one month, rather than three, in order to give you peace of mind that his symptoms are being properly addressed. I would also ask the pediatrician about the possibility that the Depakote is causing a thyroid disfunction. Good luck to you and your DS.

 

[Kobechiev]

Hello,

I have an undiagnosed Thyroid condition, meaning of course that my Thyroid makes just enough to be considered "normal" and I have all the symptoms that my doctor ignores. My mother had Hoshimoto's and is my expert on Thyroid problems. It is nice to see a thread here where you can talk about all this.

Jorie

 

[My2Pixies]

I had cancer, so I haven't had this exact experience, but it's my understanding that with synthroid she should have a pretty normal life once they get her dose adjusted.

She may have to adjust again later in life, but as chronic diseases go, once you get thyroid problems diagnosed and treated, they aren't the worst thing in the world, typically.

No experience either. I just take the syntrhoid for cancer too. Wishing you dd all the best.

Thank you

At one point my youngest was being tested for thyroid disease. I found the this site helpful:

http://www.magicfoundation.org/www

I don't imagine there are a lot of support groups since childhood thyroid disease is not common.

Sorry that I couldn't be more help; my best wishes to you and your daughter.

Thank you, that site has been very helpful!

 

[mrsklamc]

Trent Hamm from thesimpledollar.com (a personal finance blog) has written before about having hypothyroidism since birth, too, so maybe if you emailed him he'd respond?


Got a call from my endo's office yesterday- I'll be doing a withdrawal scan, so 4 weeks just cytomel, 2 weeks nothing along w/ the LID. Hope to get a date set next week.

 

[mrsklamc]

Hit the berry farm today and picked strawberries, blueberries, and black raspberries. Hopefully when I'm on the LID they will help both with the sweets cravings and...well, they're high in fiber. I'll leave it at that.

 

[luvmarypoppins]

O.K. so who has seen the thyroid thread on the cb about the sis and the healthy lifestyle, the pcp doing the care etc???

Hmm, I decided just to read right now and not comment.

So has anyone here changed their lifestyle. Honestly I havent. If I didnt have all the other physical stuff wrong with me I might have tried to exercise more, but now since the surgeon cut the nerve I cant use my L arm from the elbow up barely at all, so its probably less for sure.

I dont eat any differently either. Just the same as I always did. None of my drs. sugeon, endo etc. ever commented about lifestyle and diet etc. Have yours??

Also just curious as to who exactly "manages" your care and what that entails etc. For example I have a "team". Pretty nuch done with the surgeon part. Now I see the endo and rad. onc. about twice a year. The endo does the blood work quarterly and forwards it to the rad. onc. ONLY the rad. onc. decides when I am doing the diet, what type of scan I am having etc.

I guess I see that everyones case is different and everyone has different people managing their care etc. I guess I should be glad I have the 2 of them kind of tag teaming right now.

Do you feel comfortable/happy in how your care/case is managed?

 

[jennz]

I haven't seen that thread, might have to check it out.

I am only seeing my endo now, my pcp refers me to her for anything that might impact my meds. I lost function of my parathyroids after my 2nd surgery so that's always tricky w/the meds. I'm almost 20 years post surgery now - for the first 5 years I saw my endo and oncologist.

As far as changing my diet - nothing has ever been said and I'm on my 3rd endo (we move a lot ). I am making healthy changes in my life but that's because I need to lose 50 pounds!

I'm very pleased w/my endo now, I feel that she keeps me informed on everything, always listens to me when I visit.

Mrsklamc - where do you pick the berries at? I want to get some! Sorry you have to go through the withdrawal scan.

 

[mrsklamc]

I'm trying like crazy to lose weight and having no luck. 1200 calories a day, and nothing. I have another metabolic disorder too, and I just hit 30, so who knows. The official line is that synthroid doesn't affect weight, but the internet seems to be crawling with women who insist it does.

One thing I did see someone saying online was that synthroid is T4 and you need the T3 like in cytomel to lose weight. I have no idea.

 

[ElizK]

Well, I got a surprise call from my doctor about my blood work today. Last check done approx 6-8 months ago was ok, TSH was about 4.3. This week's blood work puts it at 10.6. How the heck did it take that kind of nose dive in such a short amount of time??? I have taken my prescribed dose of levothyroxine as I am supposed to.

On the other hand... it sure explains how quickly I'm packing on the weight and why I've been so darn tired all the time. I've had a lot of trouble sleeping since my hysterectomy in Sept, so I assumed that's what was causing the fatigue.

 

[es45]

Well, I got a surprise call from my doctor about my blood work today. Last check done approx 6-8 months ago was ok, TSH was about 4.3. This week's blood work puts it at 10.6. How the heck did it take that kind of nose dive in such a short amount of time??? I have taken my prescribed dose of levothyroxine as I am supposed to.

On the other hand... it sure explains how quickly I'm packing on the weight and why I've been so darn tired all the time. I've had a lot of trouble sleeping since my hysterectomy in Sept, so I assumed that's what was causing the fatigue.

I experienced similar problems until I went on Armour. One of the nurses called to confirm that I was even taking my Synthroid; this happened twice and I still don't know why.

 

[ElizK]

I experienced similar problems until I went on Armour. One of the nurses called to confirm that I was even taking my Synthroid; this happened twice and I still don't know why.

That was the first thing she asked me... "are you still taking your prescription." Yep, I rarely forget it. Except today. Today I forgot.

 

[mrsklamc]

I have a recurring alarm on my cell phone... 6:30 every day.

 

[es45]

Just curious: who takes Synthroid, who takes Armour, and who takes Levoxyl, etc? As I mentioned before, I took Synthroid for 20ish years, then added Cytomel about 5 years ago before taking Armour for the first time. I'm wondering what is working best for everyone.

 

[luvmarypoppins]

I am taking 200 of name brand synthroid. My ins. wont pay for it since I am not getting the generic one. I dont want the generic based on what fillers they may use and the pharmacy maybe switching suppliers etc.

 

[es45]

I am taking 200 of name brand synthroid. My ins. wont pay for it since I am not getting the generic one. I dont want the generic based on what fillers they may use and the pharmacy maybe switching suppliers etc.

I can't stand this policy! I would take a generic then when I would get it refilled, it would be a different manufacturer. At times, I could tell a difference and it was rarely in my favor!

 

[mickeysmyboy]

I am taking 200 of name brand synthroid. My ins. wont pay for it since I am not getting the generic one. I dont want the generic based on what fillers they may use and the pharmacy maybe switching suppliers etc.

Jumping in to comment on this! My endocrinologist told me NOT to take generic for those very reasons! He said that they vary so much you end up not getting the right dosage! He also told me that if insurance wouldn't pay I should take the RX to walmart because I could pay oop for a lot less!

Good luck!

 

[Christine]

I took Synthroid for about 13 years. I switched to Levoxyl a few years ago due to an allergy to one of the fillers in Synthroid (povidone). I've never noticed a difference between either med. Feel absolutely the same. The Levoxyl is cheaper though!