The THYROID Thread

[mrsklamc]

I
Anyone else have chronic sinus issues?

I do but they predate my thyroid cancer. Actually it could be that x-rays and scans from childhood caused the thyroid cancer. Anyway, Patanase is a wonder drug for me for that but of course my insurance coverage on it is terrible.

 

[Christine]

Welcome!

CelidH, don't underestimate your thyroid hormone level's ability to depress you!

Mine tends to go - low= depressed; high = crabby. I'm wondering if a dose of 137 would work for you? It would just be so much less complicated than trying to remember which pill to take.

I also take a dose of .137. That dosage was developed later in the history of thyroid meds (for instance, they didn't offer it in 1995). It could be that Canada chooses not to offer it as part of their pharmaceutical line. I find that hard to believe, but since Canada has universal healthcare, they standardize a lot of things to save money. I remember hearing a long time ago that they didn't offer the .137 dosage but I would think that would have changed by now.

 

[mrsklamc]

I also take a dose of .137. That dosage was developed later in the history of thyroid meds (for instance, they didn't offer it in 1995). It could be that Canada chooses not to offer it as part of their pharmaceutical line. I find that hard to believe, but since Canada has universal healthcare, they standardize a lot of things to save money. I remember hearing a long time ago that they didn't offer the .137 dosage but I would think that would have changed by now.

Ah, good catch Christine, I missed that pp was in Canada. I wonder if it also may be that they don't offer the brand name drug.

 

[Celidh]

I also take a dose of .137. That dosage was developed later in the history of thyroid meds (for instance, they didn't offer it in 1995). It could be that Canada chooses not to offer it as part of their pharmaceutical line. I find that hard to believe, but since Canada has universal healthcare, they standardize a lot of things to save money. I remember hearing a long time ago that they didn't offer the .137 dosage but I would think that would have changed by now.

I just assumed that there was no middle dose between 125 and 150 for Synthroid. I may not feel like my doctor has time for me but I must say she is pretty good to look things up and get second opinions if she is not sure. I've sat in her office and watched her look up certain drugs in her book. I don't believe this makes her less knowledgeable, she is a doctor not a pharmacist. I feel that is is a good thing.

Someone asked about an endo, no I am in a small town and to get a referral I would have to travel and it would take forever. Funny though, my partner's sister is an endo but she lives in another province and I would never bother her as we aren't close (I have only ever met her twice) and she doesn't like bringing her work home with her. I wish I could ask her though.

A pp mentioned sinus, I have a really annoying post nasal drip that tends to run down the back of my throat and into my chest and make me feel like I always have the "ahems". I don't complain though because the first suggestion my dr had was a nasal spray and she said if that didn't work, she would refer me to an ENT. I hate nasal sprays and didn't use it very well, so I never brought it up again. My bad!

I think a good portion of my problem is depression. Part of it may be linked to thyroid but part of it has been ongoing for years. It's one thing to know you need help but it's a totally different thing to get up the guts to ask for it. I don't want to just have a drug prescribed and I don't have the time or the money to pay for counselling so... I just spend my time either on the verge of tears (or crying) or absolutely losing my temper and being angry at my family. I don't really find much of anything funny, amusing or even fun at all. My kids and my partner have commented many times that I never smile. It is a chore to just to the bare minimum with my family. I feel bad for them. It's not fair to them to have to see me mad at them or crying. My partner has commented often that she is amazed that I cry so easily.

OK, I"m totally off topic now. thanks for listening.

 

[dischick4778]

Nope, not at all. I'm paranoid. I just think about it when stuff like the tsunami in Japan happens. It may also be-- did you ever have to do a total withdrawal scan, or just thyrogen? I didn't have thyrogen my first 2 times and you become very very aware of how dependent you are on that pill.

I have not done the total withdrawal. Other than right after surgery last year when they first found the cancer. They would not let me take the synthroid until I had my rai, it was about 3 weeks between surgery and rai. That was a bad time and I did not feel good but I think I attributed it to just having had major surgery.

I tend to be a pretty positive and calm person, that is until now. Lol. The high dose makes me crazy agitated, I have such a short fuse. But I wouldn't say I'm paranoid. Guess it's better safe than sorry though. You should do whatever gives you piece of mind.

 

[mrsklamc]

Ack! 3 Weeks? My first, horrible endo made me wait 6- even though my surgeon wrote a formal letter stating that that was unnecessary.

As bad as cancer is to begin with, it makes me ill how much extra misery I was put through due to incompetence.

 

[1Grumpy9]

After spending a great two days with a good friend and her mom (they were visiting from TN), I finally get to report on how my lab results were from my endo.

My free T4 was at 2.41, and the normal is 1.0, so my new medicine is definitely working, but a little too much...hence the reason why I am so jitery and can't sleep through the night. So we decided to back down my medicine and check again in three weeks to see where the new dosage takes me. Hopefully I will be able to sleep a whole night now!!!

I am super excited that my meds are finally working and I feel so much better....and I actually lost 10lbs with this new medicine!!! WOOOHHHOOO!!!!

 

[Christine]

After spending a great two days with a good friend and her mom (they were visiting from TN), I finally get to report on how my lab results were from my endo.

My free T4 was at 2.41, and the normal is 1.0, so my new medicine is definitely working, but a little too much...hence the reason why I am so jitery and can't sleep through the night. So we decided to back down my medicine and check again in three weeks to see where the new dosage takes me. Hopefully I will be able to sleep a whole night now!!!

I am super excited that my meds are finally working and I feel so much better....and I actually lost 10lbs with this new medicine!!! WOOOHHHOOO!!!!

Good for you!

 

[mrsklamc]

So the last I talked to the thyrogen place they were trying to confirm delivery for yesterday. I emailed the medical assistant and it did NOT come in; she said she'd call them if it doesn't come by Friday. She said I could go ahead and start the diet if I want and she'll schedule me as soon as it comes in; I'm going to start tomorrow.

 

[luvmarypoppins]

I am glad the med is working for you.

 

[luvmarypoppins]

Micayla - I would be a little anxious too until the thyrogen is actually here.

Good you have the summer to do the diet. You have so many options. So many fresh fruits and veggies available now.

Well I dont know how my new med adjustment is working out, now it seems I feel more tired than usual. I am trying to keep an eye on my symptoms so I can tell the endo if need be. At this point, I dont even know what normal is or what it is suppose to feel like. Its frustrating.

 

[mrsklamc]

Micayla - I would be a little anxious too until the thyrogen is actually here.

Good you have the summer to do the diet. You have so many options. So many fresh fruits and veggies available now.

Well I dont know how my new med adjustment is working out, now it seems I feel more tired than usual. I am trying to keep an eye on my symptoms so I can tell the endo if need be. At this point, I dont even know what normal is or what it is suppose to feel like. Its frustrating.

Thyrogen is backordered til the 16th so not starting the diet yet after all.

 

[luvmarypoppins]

Thyrogen is backordered til the 16th so not starting the diet yet after all.

Well that just stinks! Remember what I told you I read on the thy ca website?? I am glad my rad. onc. is the 5th or 6th largest us user of thyrogen. I guess when you have over 100 thyroid cancer pts. a year from my ent surgeon, its a no brainer etc.

In the future, can you go to a large teaching hospital that might have a better supply like in the city versus the suburbs etc?

I am sure you are so frustrated. I bet you want to get this over and done with.

Wishing you all the best. Hang in there!!

 

[dischick4778]

Thyrogen is backordered til the 16th so not starting the diet yet after all.

That is so frustrating. So sorry! It is not easy to live with this as it is, does it have to be complicated by back ordered medication?! I feel your pain.

 

[luvmarypoppins]

Well color me stupid. Remember I said how I was feeling so tired etc. Come to find out ds19 did my pills in his little gift to me, the 7 day pill case. Gosh, sorry I hate that thing but love ds. Well one of my pills changed shape but not color, the color is the same as another.

In the morning I take the synthroid and blood pressure pill at the same time, my endo says its fine to do that. Well I was taking another pill instead with the synthroid, so maybe it was not working well.

Honestly, I am sleeping way too much in the morning and I even took a little nap before dinner. This is not normal me. So we will see what happens now that I have the meds straight.

I am feeling still so overly tired. I dont feel like waiting till the middle of sept. to do something about this etc. as that is when the blood test is.

Christine, would I have to wait 6 weeks for the blood test? or if the tiredness is really bad should I call the endo before etc?

 

[Christine]

Christine, would I have to wait 6 weeks for the blood test? or if the tiredness is really bad should I call the endo before etc?

If it's not too personal, what other pill were you taking with the Synthroid.

TSH changes lag behind what is really going on. I think if you were to go in too soon, you wouldn't get the real story. I would give it at least 4 weeks.

How long has it been since you made a medication change?

 

[luvmarypoppins]

If it's not too personal, what other pill were you taking with the Synthroid.

TSH changes lag behind what is really going on. I think if you were to go in too soon, you wouldn't get the real story. I would give it at least 4 weeks.

How long has it been since you made a medication change?

The other pill was folic acid. Its not even from the endo but my regular gp. He only gave me that when I had the severe anemia. I honestly dont take it that much anymore.

When the endo gave me a copy of my lab reports I later looked and saw the red blood cell count is too high, over limit it says. That is another mystery to figure out. Why is the red cell count too high when I am not even taking the folic acid. The gp wanted me to take it to boost the counts when I was so anemic.

I started taking the new synthroid dose around July 19, so it really has not been that long.

 

[Christine]

The other pill was folic acid. Its not even from the endo but my regular gp. He only gave me that when I had the severe anemia. I honestly dont take it that much anymore.

When the endo gave me a copy of my lab reports I later looked and saw the red blood cell count is too high, over limit it says. That is another mystery to figure out. Why is the red cell count too high when I am not even taking the folic acid. The gp wanted me to take it to boost the counts when I was so anemic.

I started taking the new synthroid dose around July 19, so it really has not been that long.

Well there are no interactions between folic acid and Synthroid.

As for you being tired, I *really really* doubt it is the dosage change at this point. It has been 10 days and, you know, your body can be very sensitive to changes. That may be what is cause the change in feelings; however, I doubt that your TSH is at a point that you would be fatigued. I would bet it is just due to "change in dose" which is a change in hormone. I would try to make it the 6 weeks so you can know for sure how you do on the new dose but if it gets increasingly worse, I would call the doctor (try to go another 2 weeks).

 

[luvmarypoppins]

Hope everyone is doing well.

In the mail today I get a letter cancelling my January endo visit due to "unforseen circumstances". Umm, remember what I went through before with the other visit. They said to call and reschedule something. I will call on Monday as I know trying to get a visit with this endo is worse then trying to win the lottery (I dont gamble anyway)

I went out with dh today and OMG, I had a huge shooting bone pain. It was horrid. I guess I better call about the infusion too. I think I will take some tylenol tonight just to cover my bases.

Also I know the medication reduction is working somewhat at least on the hyper stuff as wonderful ds19 decided to rearrange my kitchen cabinets, just the food, without my permission. Ordinarily I am sure I would have gone crazy, but I didnt. I handled it very well. Hmm, I guess men dont know not to mess around with the kitchen stuff

 

[mrsklamc]

So if you have Mon/Tues thyrogen, then weds. Blood work and tracer dose, when do you have your pre- tracer dose blood tests? The ones for kidney function and pg?