The THYROID Thread

[mrsklamc]

It probably didn't occur to me at the time, but I'm pretty sure no one has ever used the word 'cure.'

My annual physical is when I get my bloodwork done; I schedule it around my birthday every year, makes it easy to remember. I don't think it's ever taken two weeks to come back, but I don't really notice because I'm not as anxious for the answers as I am with my thyroid stuff.

 

[mushu78]

I do not have any thyroid conditions but I know ALOT of people who do. I've worked with an endocrinologist for the last 12 years.

In reading a few of the comments I notice some common issues often commented on so I thought I would join to tell you what we coucil patients:

1) Brand name Synthyroid or Levoxyl is critical (particularly for thyroid cancer patients).
Reason: ALL generics have a 20% leeway as to how much medication is in any individual tablet. When you are dealing with thyroid medications that is TOO much. For one thing the doses are very close together (25;50;75;88;100; 112;125;137; 150; 175; and 200). Your acceptable TSH range is very small (for all patients). What does this mean? If you were on 100 mg of Synthyroid or Levoxyl, on generics you could be getting anywhere from 80 to 120 mg. (Which,of course, nearly spans 4 doses). This results in people feeling fatigue one day and maybe having heart pap another day. For the longest time the FDA wouldn't allow generic thyroid medications to be produce (because of the above situiation not because of patent). For some reason, only known to themselves they now allow it (though somewhere on their website you can find some clause stating most patients should be on brand....it's hard to find though).

2) Calcium and Iron (and multi-vitamins because they contain calcium and iron) must be taken 4 hours away from the thyroid hormone (Synthyroid or Levoxyl).
Reason: These two things will bind with the thyroid hormone and inhibit its absorption.

3) Most endocrinologists follow a TSH range of 0.3/4 - 2.5. The old range used to be 5 (although I did see a lab with the upper limit set at 9--- what they were thinking I have NO CLUE.) For anyone with hypothyroid symptoms and levels in the 3,4,5 range who have doctors that say that is normal can go onto the American Thyroid Association website and do a search regarding referance ranges. It will provide you with information of 2.5 vs. 5 as the upper limit.
Reasoning: They changed the limit because they were noticing that people complaining of syptoms in the 3-5 range eventually went higher, then requiring treatment. Another reason was that when doing a study of normal ranges they noticed that most people that were "normal" fell somewhere in the one range.

4) For those with thyroid cancer, if you are having to have a recheck for reoccurance of your thyroid cancer and your doctor wants you to go off your medication six weeks before having the scan (again this is for rechecks) ask them about THYROGEN. It is an injection that allows people in those circumstances to stay on their thyroid medicaiton. In my area, MOST insurances will cover it (occasionally one won't). I do know of one person who paid for it out of pocket ($1900 I think) because her insurance wouldn't and she felt it was a small price to pay for not having to feel like crap for 3 months. (Six weeks off and then six weeks for the medication to take affect again after you restart it).

5) For women looking to get pregnant, it is critical that your thyroid be between the 0.3/4 - 2.5 range. (For thyroid cancer patients you would have to ask your doctor what is the best range for you). Healthy thyroid levels are critical in the first trimester for the health of the baby.

6) Papillary thyroid carcinoma is THE most COMMON type of thyroid cancer. It makes up 96% of all thyroid cancer cases. It is also the MOST TREATABLE. In general there are 3 types of thyroid cancer with 2 or 3 subtypes to some of the categories. The RAREST form of thyroid cancer is the deadliest. My boss (in 26 years of practice) has never seen this type.

7) When having your thyroid removed surgically...the more experience a physician has the better. Ideally you want a physician who has preformed more than 1,000 thyroid surgeries...this can be hard to find so again the more the better but at least 100-200. Often people think that an Ear, Nose, Throat doctor is the best to do the surgery. Not always (again depends on experience). In terms of training, ENT docs usually only get 3 weeks training on thyroid surgeries in their entire training. General surgeons spend at least 3 months. It is also important to ask how many times they've been faced with complications from their surgeries (my personal philosphy is just because you done alot of them doesn't mean you can do it correctly....make sure they've done alot and have a good success rate).
Reasoning: Thyroid surgery can be tricky. You have little glands that "straddle" the thyroid call the parathyroid that regulate your body's calcium. These can be "stunned" during surgery which can result in great complications, it is also possible to accidently remove a portion of them (granted there are times when this can't be help no matter how great the surgeon). P.S. An excellent surgeon can get away with minimal scarring.

7) Synthroid and Levoxyl run pretty cheap. (Also Levoxyl is shaped like a butterfly- which is trademarked so no one can copy it- and you can tell if you pharmiscist switched it on you). In my area (Pacific Northwest) Levoxyl runs about $25-45 dollars for a 90 day supply at Costco. Synthroid runs about $50-70 for 90 day supply at Costco (Dosing is what makes the price difference...the more popular a dose the cheaper it is). Oh, at that's without insurance.

8) In my state (WA) a pharmacy is NOT required to tell you if the medication is cheaper than your copay. With most medications they will tell you BUT, when it comes to thyroid medications, they often won't (I don't think they make money with brand name thyroid). So if you are paying $30 copay for a 30 day supply at your local pharmacy....chances are (in WA) you are paying to much. You do NOT have to go through your insurance (again in WA) if it cheaper to pay out of pocket...just pay out of pocket.

9) HAIR LOSS....
Something I notice many commenting on. It can be a sign your thyroid is out of range or it could be because you changed your thyroid medication recently. It will often take 2-3 months for the hair loss issue to settle down after a change in medication.

Well have to go for now....Have errands to run. These are just some of things that hopefully help someone out there.

I almost forgot...
10) For those of you who are waiting for test results after "reoccurance of cancer checks," (I notie some commented on the time it took for them to get their results)... it could be that your doctor doesn't have the results yet. Often the test they are waiting on is a "thyroglobulin" level. That can take up to 5 days to come back here (and I live a fairly busy big city...smaller cities further out from big cities results may take longer.

P.S. Luvmarypoppins...what type of thyroid cancer do you have....I tried to find where you posted the name but all I could see was that you said it was rare.

P.P.S. Please excuse any spelling errors. I rely too much on spellcheck these days and, unfortuately, this website uses one I don't have on my computer yet.

 

[luvmarypoppins]

mushu - I have papillary with columnar cell variant, stage 4.

Well I am going for an ultrasound Nov, 3rd and then Nov. 4th I am seeing the oncologist. Usually the endo orders the ultrasound and I think gives a copy to the oncologist. But since I dont see the endo until jan. I am going to ask the onc. if she can pull up the results etc. I dont know if it will even be read that fast, plus I am the onc. lst appt. the next day (early) so they might not have it etc. I guess I would like to know etc.

Micayla - does the ultasound hurt you? Asking because you had the neck dissection too. I think mine even hurts more since surgeon 2 had to cut out everything again to get to the jugular vein when I was dying. He told dh he went in there and kept "chopping" away till he found the bleeder so I guess I have ALOT of scar tissue. sigh, sigh.

My gp never callled about my blood tests. Tomm. will be 3 , yep count em, 3 weeks. I am calling tomm. to make an appt. as I need a med. I will make that appt. and I dont think I will go back to him after that. I am not even going to ask for my medical records. Everything I need is in my head.

It will also be interesting to see what the eye dr. says about my constant tearing etc. I hope its not related to anything else etc. cancer wise)

Hope everyone is doing well. How goes the voice dischick?? Mine was bad tonight. Good as dh cousin called. I normally dont enjoy speaking to him. I told him dh was in Russia right now, so I got stuck talking to him, oh well.

 

[mrsklamc]

Micayla - does the ultasound hurt you? Asking because you had the neck dissection too. I think mine even hurts more since surgeon 2 had to cut out everything again to get to the jugular vein when I was dying. He told dh he went in there and kept "chopping" away till he found the bleeder so I guess I have ALOT of scar tissue. sigh, sigh.



It will also be interesting to see what the eye dr. says about my constant tearing etc. I hope its not related to anything else etc. cancer wise)

My ultrasounds do not hurt at all. Occasionally, I have a shooting pain that just lasts seconds- I think the nerves regenerating. She said they might regenerate for up to 18 months. Today is one year post-op.

I think I have heard that tearing can be caused by RAI? Same type of damage as the salivary glands?

 

[luvmarypoppins]

Actually the endo said the rai should have "dried out" my eyes and that is why she couldnt understand the tearing either. She thinks it might be a tear duct problem?

 

[dischick4778]

Hope everyone is doing well. How goes the voice dischick?? Mine was bad tonight. Good as dh cousin called. I normally dont enjoy speaking to him. I told him dh was in Russia right now, so I got stuck talking to him, oh well.

Voice is still pretty terrible. Every day someone asks if I have a cold. And does it hurt me to talk. Which it doesn't, but it is becoming annoying to have to explain all the time. I have been having troubles with my scar recently. I have two areas that have swelled up a bit and I can't figure if it's infected or just my body rejecting stitches. The last time I saw my surgeon he said it was possible that my body could reject a stitch and not to worry about it, but it doesn't look very nice. Anyone else feel like it's always something.

 

[mrsklamc]

Does anyone know how much your weight has to change to affect your levels? Lost 8 pounds and the last few days I feel 'off'- kinda restless I guess. Today is 7 weeks back on my pills, and I've heard it takes 6 weeks to get up to your regular dose so I guess if I'm too hypo after the weight loss the timing makes sense. I called my endo's office today but they were out until Monday.

 

[luvmarypoppins]

Micayla - I heard about 6 weeks too. Just wanted to say..congrats on the weight loss. Stay away from the halloween candy!!

dischick - have you ever been scoped post surgery? If you were scoped pre surgery and they took pictures they should compare both of them. My surgeon showed them to me. It does take a while, so try not to get too frustrated. Maybe jpllly ranchers might help too etc. I didnt have the stitch problem with my thyroid surgery but when I had my stomach problem in July the surgeon there told me my body might be rejecting a stitch too. I hope the swelling has gone down for you.

I am hoping all goes well with the sono and rad. onc. visit next week. I am feeling so tired too.

 

[dischick4778]

Micayla - I heard about 6 weeks too. Just wanted to say..congrats on the weight loss. Stay away from the halloween candy!!

dischick - have you ever been scoped post surgery? If you were scoped pre surgery and they took pictures they should compare both of them. My surgeon showed them to me. It does take a while, so try not to get too frustrated. Maybe jpllly ranchers might help too etc. I didnt have the stitch problem with my thyroid surgery but when I had my stomach problem in July the surgeon there told me my body might be rejecting a stitch too. I hope the swelling has gone down for you.

I am hoping all goes well with the sono and rad. onc. visit next week. I am feeling so tired too.

I'm sorry I don't understand, what do you mean by scoped? I have pics from the sono they did before my surgery showing the tumors. The swelling is getting better. One area has completed healed and the second area is getting smaller. I can't wait for the whole thing to be healed. Have any of you noticed a difference from being on the generic vs actual synthroid? I have been so tired lately and I'm wondering if being on the generic is causing this.

Good luck with your visit next week luvmarypoppins!

 

[luvmarypoppins]

dischick - I only take the name brand as I dont want to have those problems. My ins. wont pay for it since they will only cover the generic. Small price for me to pay to make sure I am at the same dose all the time with no fillers etc. I think I pay $25 for it a month.

On the scoping issue...did you ever have the laryngeal? scope. Its up your nose and down your vocal chords etc. They give you some spray to numb the back of your throat. Make you say ooh and ahh alot and watch your vocal chords move on a tv screen and print out pictures if they want to. This is how they can tell if your vocal chords were damaged during surgery, are bruised etc. etc. I have had so many of them, by both my ent surgeons. I think you should at least ask your surgeon about it. I even had it done in the hosp. post op but usually I had it done in their office. and OT: Think your little guy is a cutie!!

 

[dischick4778]

Thanks luvmarypoppins! I can't believe how fast time has gone, my little guy is 9 months old already! And he is wonderful.

As for the scope, no I definitely never had that. The surgeon did say that there is a procedure he can do to fix my vocal cords. But he has yet to explain it, he keeps saying to wait 6 months before we discuss it. Thanks for the advice on the name brand meds, I am going to bring that up to my endo next visit.

 

[luvmarypoppins]

dischick - I know I explained that surgery to you before. But before your surgeon even talks to you about that he should rule out if you REALLY need it.

This would be done by...
1. The scope test I just mentioned and
2. The strobe test. That is what I had done too. Its hooking you up to like some dog collar thing with the scope down you and a speech therapist watching like the speech waves on a print out too.

Ask you dr. about these things. I go to a university hosp. for this. I dont know where you go if they have that equipment but they should. I know my one surgeon is a voice specialist from westchester. He speaks at conferences on the voice etc.too.

If your surgeon cant do it, he should send you somewhere that can for sure. You dont want them injecting you with foam if you dont need it etc.

Wishing you all the best as always.

 

[dischick4778]

I know I complain about my voice, but I feel like I can share that here because you all understand. That being said, I'm really not interested in any unnecessary procedures. After all I have been through already, and with the possibility of more in the future should the cancer come back, I don't really want to have this done. I'm ok with a soft, raspy voice. Thank you for the information and support.

 

[luvmarypoppins]

Well I survived the sonogram today. Its always fine on the R side, just the L side that was terrible. I was lying there gritting my teeth the pain was so bad. She even stopped and said - are you all right? I said yes, you just go and do what you have to do etc. She said it would be over soon. Glad it was.

Good thing she said the oncologist can pull up the report tomm. in the computer, so I hope she does.

 

[mrsklamc]

I'm so sorry it was painful for you. I guess it must be related to how much more extensive your surgery had to be?

 

[luvmarypoppins]

I'm so sorry it was painful for you. I guess it must be related to how much more extensive your surgery had to be?

Well I know if you look at the L side of my neck you can actually see the vein beating through the skin, pretty gross!! My ds say "its weird".

There is a picture of me on here but you cant see it that well, but you can see it looks different (not a close up, jjust me and another diser)

And I am on and Praising God today. The oncologist said my sonogram was good. Her plan is to have me come back in 6 months and then we will do the 2 thyrogen shots in the hospital and then the 5th day is the lab blood test. I will ask her about that. As last time I had the blood draw in the hosp. I read it had to be done precisely with in the hour of when you had the thyrogen shots, for example between 11 am and 11:59 am. I know the lab my ins. takes has an office closer to the hosp, but we will see.

The onc. also said they are having a problem with the thyrogen supply. I am thinking she means they arent manufacturing enough of it?? She said that should be fixed before I get back there, hmm supply and demand?? Christine, any insight??

I also told her I am having pain in my jaw, not exactly like the swollen salivary gland stuff, but its across from my ear canal. She said I should go see the ent surgeon. Any one else have something like that??

 

[Christine]

And I am on and Praising God today. The oncologist said my sonogram was good. Her plan is to have me come back in 6 months and then we will do the 2 thyrogen shots in the hospital and then the 5th day is the lab blood test. I will ask her about that. As last time I had the blood draw in the hosp. I read it had to be done precisely with in the hour of when you had the thyrogen shots, for example between 11 am and 11:59 am. I know the lab my ins. takes has an office closer to the hosp, but we will see.

The onc. also said they are having a problem with the thyrogen supply. I am thinking she means they arent manufacturing enough of it?? She said that should be fixed before I get back there, hmm supply and demand?? Christine, any insight??

I always had my shots done at my endo's office and had a 10:00 a.m. appt. for them. I then went on the Friday to the hospital lab and had my blood draw. My doctor told me to go around 10:00 but I did not have an appt. and no one was really pushing me to go in at a real specific time.

I don't know about the Thyrogen supply. I heard that last year they were having quality control issues with it and that they had found "debris" in many of the vials and if a doctor found that it should be discarded. Nice, huh? Not sure what this latest problem is about. I haven't been reading the thyroid cancer mailing list so I'm out of the loop. They probably know.

 

[luvmarypoppins]

Yes I dont know if it was this year or last year but I had to examine the vial of thyrogen personally and then sign a paper stating that I saw no debris in it etc.

 

[dischick4778]

I'm sorry I'm not familiar with all of this - what are the shots for?

I'm not sure if this is related, but I did hear that the natural thryoid supply is very low. My friend who was on it had to switch to synthroid because her Dr couldn't get the natural anymore.

 

[Christine]

I'm sorry I'm not familiar with all of this - what are the shots for?

I'm not sure if this is related, but I did hear that the natural thryoid supply is very low. My friend who was on it had to switch to synthroid because her Dr couldn't get the natural anymore.

Thyrogen is a drug that causes your TSH to rise very high, very quickly. It is recombinant r-TSH. It takes the place of levothyroxine withdrawal (6-8 wek process) for a RAI scan.