The THYROID Thread

[macraven]

why don’t you go thru the ABBVIE program it has a huge discount?

I got caught up in an expensive mess two years back and had to pay too much for brand synthroid meds

I set up with ABBIE by connecting with Eagle Pharmacy in Lakeland Fl
Prices are so much lower for brand name

If you need any basic info, let me know

 

[Haimia]

Please fill us all in on the ABBVIE program. I, too, only take synthroid and pay out of pocket.

 

[Allison Joy]

I have a question I've been meaning to ask here for quite awhile. I know this is the opposite problem most people with thyroid issues have, and I'm greateful for that. I've never had any "real" issues with my thyroid, but I sympathize with how difficult it can be to manage for those who do.

My mom and brother both had hypothyroidism, and both were able to go off thyroid medication at some point, and have not had to go back on. Almost every doctor I've talked to has looked at my like I have two heads when I say that.

I started seeing an endocrinologist as an adult for reasons unrelated to my thyroid. During routine labs, she said my TSH was high. My T4 was normal, always had been.

I'm not a doctor, but nearly everything I've read says that high TSH with normal T4 is considered "sub clinical" and not it's not necessary to treat unless there are symptoms. I've never had symptoms. She still recommended Levothyroxine, and since I'm not a doctor, I deferred to her expertise. She's raised my dose once, because my TSH was just barely high, but again, T4 normal, no symptoms.

My most recent visit, my TSH was normal, but my T4 was actually slightly high. Still no symtpoms of hyper or hypothyroidism. She wanted to recheck my labs in 6 weeks. 6 weeks later, and it was the same. T4 slightly high, TSH normal. She told me that for some people, T4 is not reliable, and kept me on my current dose.

Again, knowing I am NOT a doctor, but reading multiple sources, I've always understood T4 to be more reliable and TSH to be less reliable.

My PCP is actually also an endocrinologist, but his specialty is diabetes (in addition to internal medicine). I've thought about asking him if he would be willing to manage my thyroid medication dosage on his own, but I hesitate for a couple of reasons: one, I'm not sure what insurance will do with that... Will my well visits suddenly become specialist visits? I also don't want to undermine my current endocrinologist, or come across as "doctor shopping" because I'm not "getting what I want." I don't mind taking the medication, and have no side effects, and I don't see that it does any harm, but at the same time, if I don't need to be on it...

Should I just let my PCP bring it up at the next appointment? He asked about it last time. Do I ask him his opinion without asking if he'd be willing to manage my thyroid levels? Or do I just leave it be, since I'm not really experiencing any issues either way?

 

[Caseheidi]

Allison Joy, interesting debate, and not sure there is a good answer. I do know that sometimes the numbers can be indicative of a possibility that your thyroid is changing. As your T4 has had a change, it seems that it is important to keep an eye on it. Also with you having a family history, you may be more inclined to issues. I do know that when we discovered that I had Thyroid Cancer, I did not realize that I had symptoms. It was not until after everything was over and we started monitoring my levels that I realized I had been having symptoms most my life. They just came on so gradually and I was uninformed, so I had no idea.

As for talking to your PCP, it is always wise to get an opinion from a doctor you trust. If you are able to be monitored by him for this, then why have two doctors. You may find that your PCP does not feel that he has enough knowledge in Thyroid as he specializes in diabetes, and would prefer you to stay with your endo. As for insurance, you should be able to call and ask them about it. I would assume as you have this Doctor down as your PCP, they should continue to charge him as such, and not change him to a specialist.

Good luck. It is never easy making all these decisions. I would recommend that you ask as many questions as it takes to make you feel like you have an informed decision. Personally, I wouldn't want to be with a Doctor who would get upset at me asking questions.

 

[Allison Joy]

Good luck. It is never easy making all these decisions. I would recommend that you ask as many questions as it takes to make you feel like you have an informed decision. Personally, I wouldn't want to be with a Doctor who would get upset at me asking questions.

Thank you. This at least confirms that I have reason to at least ask my PCP/ask a second opinion and not just continue on without questioning.

 

[luvmarypoppins]

This thread has been quiet. How is everyone doing?
@Christine and all
Had my 6 month check up. Not what I expected. They just finally got my blood work back.
My tg which was always 0 is now 4.3 concerning.
I am getting a ct scan of my chest because they saw some questionable lymph nodes when I was in the hospital in Nov. Could be from the virus or something else.
Why do I feel like a pet scan is in my future especially since I don’t uptake any more.
Dh and I were thinking of a Disney trip. Might be a good time soon.
Check in when you can!! Enjoy your Spring.

 

[HeatherLassell]

I will be having my half thyroid removal surgery in June. I'm so scared.

 

[Kennywood]

I will be having my half thyroid removal surgery in June. I'm so scared.

I had a thyroidectomy done. I was worried that I'd be on medication the rest of my life. It turns out that I didn't and I've had absolutely no problems due to the surgery. (Life in general, well, that's another story....lol)

Shortly after my surgery, I was in a department store looking for clothes. A little boy was running around, as little kids often do. He bump into me and he saw my scar. Being a curious child, he asked, "What happened to your throat??" I decided to have a little fun with him and said, "Well, I talked back to my mom and (I slid my finger across my throat)." The boy's eyes became big as saucers and he said, "Really? Wow!!", and he ran off. I honestly intended to tell him I was joking but he ran off before I had the opportunity. So, somewhere in the world, there is someone who thinks that my mother slit my throat.

The actress, Catherine Bell, had thyroid cancer. She usually refuses to have makeup used to cover her scar. She prefers to use it as a teachable moment.

 

[HeatherLassell]

Shortly after my surgery, I was in a department store looking for clothes. A little boy was running around, as little kids often do. He bump into me and he saw my scar. Being a curious child, he asked, "What happened to your throat??" I decided to have a little fun with him and said, "Well, I talked back to my mom and (I slid my finger across my throat)." The boy's eyes became big as saucers and he said, "Really? Wow!!", and he ran off. I honestly intended to tell him I was joking but he ran off before I had the opportunity. So, somewhere in the world, there is someone who thinks that my mother slit my throat.

lol sounds like we have the same type of humour. I'm glad you had no complications and didn't have to be on meds. Mine should just be half and they claim my thyroid is working fine so hopefully the half will take over. I'm just so worried about something happening to my voice. I love to sing and I'd be devastated. I literally cry anytime I think about this surgery...I'm so freaking scared.

 

[Kennywood]

It will be difficult to swallow for about a week. The scar will be noticeable for a while.

The thyroid has no relation to the larynx, so your voice shouldn't be affected at all. I can sing just as well now as I did before my surgery. Of course, in my case, I didn't sing well then,.......lol

Just tell the surgeon that you'd better not wake up looking like the Bride of Frankenstein.

 

[HeatherLassell]

It will be difficult to swallow for about a week. The scar will be noticeable for a while.

The thyroid has not relation to the larynx, so your voice shouldn't be affected at all. I can sing just as well now as I did before my surgery. Of course, in my case, I didn't sing well then,.......lol

Just tell the surgeon that you'd better not wake up looking like the Bride of Frankenstein.

LOL! I def don't want to look like that.

Also, your vocal nerves are right there on both sides of your thyroid.

I changed doctors because the ENT I was seeing said "Oh you won't sing again." LIKE ***? So I switched to a major city and am going with a doctor there. I've implored them to pretend they are working on Celine Dion and not to mess up my voice. They were very reassuring which made me feel a lot better.

 

[HeatherLassell]

My surgery is on June 12th. 2 weeks. I have been nauseous every day with headaches because I am stressing. I can't seem to calm down about it. Ugh.

 

[lisaviolet]

I will be having my half thyroid removal surgery in June. I'm so scared.

Oh Heather, I am so sorry you are fearful.

I had a total thyroidectomy last year. The hormone situation has not been joyful for me but the operation was a complete success. Everyone actually noticed how clear my voice was instantly the next day (My voice was awful for over a year before surgery, due to the strain two of my nodules were putting on everything involved.)

I thought I would care about the scar. I have not, at all. Not sugar- coating anything. I watched the surgery on YouTube the night before, I thought is was fascinating. My surgeon not so much. She was Why would you do THAT? It was comforting for me for some reason.

I also filled my painkillers and took none. I know I might have had a crazy good surgeon but just want you to know it was not anywhere near where my brain was taking me beforehand.

Reading Kennywood, I remembered I took a horror film shot for my nieces right after surgery. But then I realized I must have lost some brain cells, as horror movie victims do not get bandages in these slasher films.

My one suggestion is to acquire a copy of your pathology & surgical report at some point afterwards. My surgeon and my endocrinologist translated it all differently & I have appreciated having the information in my hand, going forward.

All the best to you.

 

[Caseheidi]

My surgery is on June 12th. 2 weeks. I have been nauseous every day with headaches because I am stressing. I can't seem to calm down about it. Ugh.

Good Luck tomorrow Heather. I will keep you in my thoughts. I hope that moving forward you will feel better and things will work out how you want.

 

[lisaviolet]

Thinking about you as well. Hope it went/goes well today for you Heather.

And remember no initial judgements, especially on voice. Nerves - and surrounding area -need time to heal.

 

[luvmarypoppins]

Sorry I haven’t been on this thread lately
Heather - I hope you are healing and recovering from your surgery. Rest, take it easy and don’t push yourself.
Update us when you can.
I agree with getting your pathology report.

My own little update - My endo didn’t like the ct chest results. She said it was not thyroid cancer cells in my lung and sent me to a pulmonologist.
Next week I am having a ct to check out a lump/mass in l upper lung. Depending on that maybe a pet scan and possible biopsy. Never a dull moment.

 

[Caseheidi]

Sorry I haven’t been on this thread lately
Heather - I hope you are healing and recovering from your surgery. Rest, take it easy and don’t push yourself.
Update us when you can.
I agree with getting your pathology report.

My own little update - My endo didn’t like the ct chest results. She said it was not thyroid cancer cells in my lung and sent me to a pulmonologist.
Next week I am having a ct to check out a lump/mass in l upper lung. Depending on that maybe a pet scan and possible biopsy. Never a dull moment.

How scary. We had a scare with my DH years ago, and it ended up being a disease called Sarcoidosis which many people have but do not know anything about. My DH is one of the rare ones who has flairs ups and it affects many of the systems in his body. Never fun to wait for all the test results. Hope things move quickly for you and you have answers soon. You will be in my prayers!

 

[HeatherLassell]

Than you everyone for the nice words. Surgery happened around 1:30pm on Monday so it's only been about 4 days. Incision feels really tight but there is not a lot of redness or swelling, so far so good. I'll post more about it when I feel better.

 

[HeatherLassell]

Than you everyone for the nice words. Surgery happened around 1:30pm on Monday so it's only been about 4 days. Incision feels really tight but there is not a lot of redness or swelling, so far so good. I'll post more about it when I feel better.

So it's been over a week now (surgery was last Monday) and I'm feeling much better. My neck is still tight but that's due to the steri strips still hanging in there. My neck doesn't look too bad, I got really lucky that it closed perfectly and is healing really well. I didn't really get any swelling at all. My voice is pretty normal now. I definitely am very tired since the surgery. I have found myself taking 2-4 hour naps in the afternoon. Or just going to bed early. My follow up bloodwork and apt with the dr are near the end of July.

 

[lisaviolet]

Sorry I haven’t been on this thread lately
Heather - I hope you are healing and recovering from your surgery. Rest, take it easy and don’t push yourself.
Update us when you can.
I agree with getting your pathology report.

My own little update - My endo didn’t like the ct chest results. She said it was not thyroid cancer cells in my lung and sent me to a pulmonologist.
Next week I am having a ct to check out a lump/mass in l upper lung. Depending on that maybe a pet scan and possible biopsy. Never a dull moment.

Hope everything goes well with the investigative scans luvmarypoppins.