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Old 07-24-2011, 01:58 PM   #1471
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On another note, I think I'm going to start a co q 10 supplement. It's pretty expensive but supposedly good for gums, which I've had some trouble with since the 2nd radiation dose. Thought I'd throw that out there and see if anyone else has tried it, or wants to.
My dentist said I should rinse with ACT alot which I do. This past visit he did have to do alot of cleaning and I didnt have any cavities so that is good for me. I do the restoring one. I alternate from the green and blue bottles for the flavor. I like the green one better though.
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Old 07-24-2011, 02:18 PM   #1472
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I know I'm probably paranoid but I NEVER throw out synthroid. When my dose changes I stash it in case there should ever be some kind of natural disaster or disruption to the supply chain.
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Old 07-24-2011, 07:42 PM   #1473
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What was your reduced to? Mine was 200 and now they are trying 175. Also did your endo tell you what tsh she wants you at? Asking as Christine also says she cant believe that mine said a 2 or 3 is ok. Maybe mine means a 0.2 or 0.3? I am not throwing out the rest of my 200 yet, just in case.
I'm down to 200 from 224 levo. My tsh is 0.05 but my thyroglobulin antibodies are still 672 (down from 3,000 originally). My calcium is still only 8 but she said we will watch it.

mrsklamc - where do you live again? I can't imagine feeling as though I would not get my medications. Living in NYC I guess I don't even think about it. Is there a shortage in the US?
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Old 07-24-2011, 07:56 PM   #1474
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mrsklamc - where do you live again? I can't imagine feeling as though I would not get my medications. Living in NYC I guess I don't even think about it. Is there a shortage in the US?
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.
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Old 07-24-2011, 09:51 PM   #1475
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Hi, I just found this thread. I was diagnosed with hypothyroid 5 or 6 years ago. Have been on Synthroid and spent the last year playing with the dosage because my levels were low. At the moment, I take two different dosages 125 one day and 150 the next. 125 was too low and 150 was too high for me. My gp also told me my magnesium was low when I had full blood work done last month. I don't know if they are related.

I don't always feel great and have major mood swings that vary from being angry and anxious to be sad and weepy, but that is most likely related to mild depression. I don't know thought how much if anything my thyroid has to do with that.

I have skipped through this thread and it amazes me how much many of you know about your levels and the numbers. I never have any idea what my levels actually, just that the doctor tells me they are either high, low or fine. I also never ask because my gp always seems to be in such a hurry that I don't feel like asking. I know that is no way to be but..

I do know that I quite often have trouble swallowing things, it's like they get stuck in my throat, even if they are chewed well. Apples are really bad for it. I always make sure I have a drink with me when I am eating. I did mention this to my gp and she sent me for a test where I had to swallow a liquid while they checked out my throat and that came back fine.

The thing that bothers me most about my doctor is that she never asks me how I am when I go in her office. Not how are you, how do you feel, how are things going, nothing other than basically what do you need today. I just don't feel that she is approachable because she is so busy. Getting another doctor is out of the question, there just aren't any to be had for those with no doctor and if you already have one, you would never get in to a doctor even if they were taking patients.

Anyway, I feel lucky that I haven't had to go through as much as some of you have.
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Old 07-24-2011, 10:57 PM   #1476
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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.
O.K. I didnt count them but its probably around 15 so I guess I will take your advice and save them for a rainy day
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Old 07-24-2011, 11:02 PM   #1477
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Well I am happy to report that I went out with dh today in the car and he was so amazed that I was not screaming my head off and hyper ventilating at his driving habits

And ds20 was driving me so crazy. I told him, why dont you go out and play with your friends. Normally I would have been flying off the handle etc. But nope, not anymore.

Can I just say my family is my new synthroid dose.

Now if only the blood tests will be ok.

Good bye for now high synthroid dose, I knew you well!!
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Old 07-24-2011, 11:10 PM   #1478
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Celidh - welcome!! I am sure it is frustrating when you dont feel you are getting the kind of care you need from your doctor. I guess the general practiconer is your only option instead of an endocronogist.

I would ask all the questions you want, its your health and your body. You should also ask for copies of your lab reports if they are not willing to go over them with you. That way you can always have a reference for each visit.

I felt like you did when I had the higher dose, but now I am feeling much better. I didnt have the depresssion though.

I too had such a hard time swallowing things such as you do. I cant eat bread or french fries that much. Always have to have the liquids nearby too. But mine was a result of all the thy ca surgery etc.

I didnt have that particular swallowing test, but my ent surgeon has scoped me alot with the laryngoscope (sp?) and saw lots of what was going on from the throat down to the esophagus.

Will your dr. consider any other kind of tests to check on your swallowing issues?

Hang in there. I am sure things get difficult at times. You will always be your best advocate.
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Old 07-25-2011, 10:08 AM   #1479
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Celidh - welcome!! I am sure it is frustrating when you dont feel you are getting the kind of care you need from your doctor. I guess the general practiconer is your only option instead of an endocronogist.

I would ask all the questions you want, its your health and your body. You should also ask for copies of your lab reports if they are not willing to go over them with you. That way you can always have a reference for each visit.

I felt like you did when I had the higher dose, but now I am feeling much better. I didnt have the depresssion though.

I too had such a hard time swallowing things such as you do. I cant eat bread or french fries that much. Always have to have the liquids nearby too. But mine was a result of all the thy ca surgery etc.

I didnt have that particular swallowing test, but my ent surgeon has scoped me alot with the laryngoscope (sp?) and saw lots of what was going on from the throat down to the esophagus.

Will your dr. consider any other kind of tests to check on your swallowing issues?

Hang in there. I am sure things get difficult at times. You will always be your best advocate.
I am working my way through this thread.
What wonderful useful information from all your stories.

I am a Hodgkins lymphoma survivour ( 18 years now)
And have been treated With synthyroid for with hypothyroidism for the last 8 years.
I take 1.25, ( started at. .75 ) and have been worried about the lack of info from my doctor about my levels......
This thread has made me make an apt. And follow up this week.
There seems to be lot more side effects that I wasn't aware of That I have been experiencing lately (mood swings, bone pain). I didn't make the connection to my thyroid but just thought it was aging.

Anyone else have chronic sinus issues?
I am recovering right now from my third very aggressive sinus surgery in the last 5 years.
I have mast tubes in my nose to carry the antibiotics and steroids right into the sinus.
I have so many different doctors, I think they forget about the thyroid when they are medicating and operating, and I wonder if there is any connection...
Sinuses and thyroid....
Fighting infections and immunity...

Anyway, thank you for all the info on here.
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Old 07-25-2011, 12:48 PM   #1480
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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.
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Old 07-25-2011, 12:51 PM   #1481
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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.
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Old 07-25-2011, 01:05 PM   #1482
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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.
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Old 07-25-2011, 01:23 PM   #1483
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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.
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Old 07-25-2011, 06:43 PM   #1484
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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.
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Old 07-25-2011, 09:58 PM   #1485
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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.
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