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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
7/28/12 10:55 A

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UGH about the apnea!
That must be awful... do you have a Cpap machine you can use?
Chances are that's contributing to you being sleepy during the day.

Docs are so freakin busy that its really difficult for them to keep up on all the medications and their side effects and every new thing that comes down the pike. Excellent he took the time to look up what you said, didn't just Pshaw you into silence and ignore what you said. Looks like you got a keeper, all that head stuffing and insane residency hours they do in med school hasn't blunted his humanity!

Looking forward to you feeling better!
Lets hope the bump up will do the trick... just give it some patience... guess that's why they call us patients to begin with?

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
7/28/12 6:46 A

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My doctor had never heard about the possibility of Metformin messing with your TSH... so he looked up the studies himself, and was surprised to find studies even that were in the Journal of Endocrinology and Metabolism. I'm off of the Metformin, he said he really didn't see that I needed to be on it to begin with, and he was really excited to see what will happen with my TSH! He even thanked me for teaching him something new! :D

Sleep... it seems like its all I do again. Except for at night, I've found myself doing the same things I had been doing before I had lost all that weight a few months ago... my apnea is back - so I wake up in the middle of the night sitting straight up. In the last 6 weeks, I've gained back every single pound I lost while on the Synthroid + Cytomel.

Anyhoo... My new doc did bump me up another half grain... he even felt pretty bad that I hadn't been doing well at all. I go back in another 5 weeks for labs, and 6 weeks for another doc appt.

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
7/28/12 12:49 A

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Mmm!

Hey girl.
Small changes like from .02 to 0.7 TSH can just be a temporary thing.
Your T4 has dropped because you aren't taking 150mcgs of Synthroid anymore. That's a lot of T4...

Whenever you're on a Porcine like Armour, its a good idea to get your Free T4 AND free T3 tested.

Have you been getting good sleep every nite?
Important for keeping proper levels of ghrelin and leptin to keep your weight steady.

I've read that Metformin can mess with your thyroid numbers/you.
What did your doc say?

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
7/23/12 3:43 P

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Update!

After being switched from 150mcg Synthroid + 25mcg Cytomel to a starting dose of 1.5grain Armour - I just had my 6 week lab tests done, and I'm even more confused than ever. My hypo symptoms have been getting worse and worse it seems every day. Gained back 15 pounds that I had worked so hard to lose, and I won't get into all the other great stuff I've been dealing with. I did however keep a log to take to my doctors appointment of absolutely everything I ate + how I had been feeling.

Anyhoo - my TSH has fallen from 0.02 down to 0.07 ref.range 0.34-5.6, and my FT4 has fallen from midrange to being below normal. I'm not sure about my T3, as it seems that they didn't test for it since I didn't outright ask for it. :S

Thinking back though, over a year ago, my TSH had always been pretty high, and I was constantly having my dose of Synthroid upped. I was at 200mcg when my endo at the time put me on Metformin. Ever since then, I've always had a supressed TSH, and every visit afterwards its caused my doctors to lower my dose regardless of how hypo I felt.

I'm so flipping sick of the TSH madness. I did a little research and found some studies of different medications causing TSH supression, and Metformin is one of them. Has anyone had any experiences with Metformin messing with their TSH? I'm just trying to come up with valid ideas of what could possibly be going on with me.

Doctors appointment tomorrow to discuss my labs. Really hoping I was right about choosing this doctor, and hope that he'll wonder why my TSH is all screwy as well.

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
6/14/12 12:10 P

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WOW, sounds like you had a great doctor visit!
Good to know that you're doing everything you can for your self.

I've never taking Armour, so I can't tell ya what's up with how to take it.
What I've heard others say is crush it and put it under your tongue with a bit of sugar to get saliva started.

Hopefully Purrz will be by with her recommendation!

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
6/14/12 6:38 A

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I had my follow-up appointment yesterday! My doctor does think I'm just a little hyper, but not by much. He thinks most of my issues I'm having are stemming from the metformin, which he doesn't think I need to be on at all. My metformin dose was dropped from 2000mg to 500 - just to see how my body reacts. If all goes well, in 6 weeks I won't be taking it at all.

We also switched my Synthroid and Cytomel to Armour which I can get from the Naval Hospital with absolutely no co-pay which is awesome - he said the Armour will be a lot more gentle on my body, and that he's had a lot of success treating with Armour rather than Synthroid.

When I asked about supplements, he said whatever supplements I decide to take would be great as most women are deficient in just about everything. So, I'm planning on taking D's, B's, Magnesium, my Selenium, and my daily womens vitamin.

As far as my diet goes, he had me print out my log for 7 days - and he said what I'm doing is perfect as far as types of foods/calories and stuff. He said I should have no problem losing weight once we get everything sorted out.

Today was my first day on the Armour. I chewed it up. Am I right in doing that? I think I read somewhere about chewing it because of the cellulose in the new formula?

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
5/30/12 12:23 P

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Great news, girl!

So nice to be able to speak to someone with an open mind that listens.
Some doctors don't even pretend to!

Would love to know what he says and advises for you....

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
5/30/12 11:50 A

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Thanks Mzz! :D

I took the plunge last week and fired not only the endo I had been seeing, but my Primary Care Manager as well.

Life is too short to have to deal with an endo who refuses to give you any real answers or even listen to you... and all my PCM had to say about my issues what that "well... maybe this is your new normal". See ya! Lol.

I happened to find an internal medicine doctor about a half hour drive away who's notorious for actually listening to his patients, and looks at the big picture. Actually, I just had my first appointment with him, and it was a million times different than any other doctors appointment I've ever had! He asked me all sorts of stuff to gauge my stress level at home, what I do for exercise, wants me to log a weeks worth of eating for him, and he came out and said that he prefers to prescribe dessicated thyroid. OH! And he's actually running the right tests on me!!! Exciting!

I go back in 2 weeks to find out what we're going to do - and to give him a chance to read all the medical records he'll have pouring in from the doctors I've been seeing. I'll let you all know what's happening!!

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
5/10/12 5:20 P

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hey girl!

Here's a few answers...

1.TSH is only one number that's looked at. There's also Free T3 and Free T4... the two thyroid hormones. As long as you have a healthy pituitary, you'll have TSH. The pituitary doesn't know you don't have a thyroid... it only knows how much thyroid hormone is in the blood. If you don't have a thyroid, you have to take thyroid hormone supplements. The same feedback loop exists, only the thyroid hormone in your blood is there thru your meds, rather than your thyroid making it.

2. You need to have both T4 and T3. Here's why. T4 stays in your body for a really long time, the half life is about 5-7 days. Its like food in the fridge... it has to be prepared by deiodinase before it can be used. This happens in every cell all over the body also quite a bit of it is deiodinased in the liver. In order to be used one iodine molecule is removed... it becomes T3. T3 is like ready cooked meals. Nothing has to be done to it. The problem is that just like like a freshly cooked meal, you can only eat so much at a time before it deteriorates. Its half life is only 1-2 days.

3. I think if you understood what I wrote in 1 and 2 above you already know the answer to this. If the info is still confusing, the answers are:
a)You need both T4 and T3 for good health, because your body can only use so much T3 at a time what's not used it degraded. T4 is backup, as it can be converted into T3 all over the body in a pinch AND it has a really long half life... stays around for a long time. Provided you have deiodinase, which requires selenium, which is why I often tell people to take a brazil nut everyday.
b) TSH doesn't care if you have a thyroid or not. All it responds to is how much thyroid hormone is in your blood. Meaning your thyroid hormone can come from your own thyroid, synthetic meds, Porcine meds. Its like a bill collector. It doesn't care who's paying the bill, as long as someone does.

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
5/10/12 4:25 P

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I still haven't checked out carnitine - but everything else looked fine. I will definitely look into it in the near future though.

I have some questions though:

1. Since I no longer have a thyroid - how the heck can me being hypo/hyper be based on TSH? From the way I understand the way TSH works, is that TSH is secreted by the pituitary and tells the thyroid glad to produce thyroid homones. How does TSH affect me when I don't have a thyroid to boss around?

2. Basically an offshoot from question #1 - How do T4 levels affect me, when my T3 levels are mid range? From what I've read, and I could quite possibly be wrong in my understanding is that T4 doesn't really do anything besides convert to T3.

3. Based on the above questions, the fact that I don't have a thyroid of my own for TSH to boss around, shouldn't my wellness be based on my T3 levels alone?

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
5/4/12 7:48 P

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WOW, sorry to hear you're not feeling any peppy-er... and that the Ashwagandha didn't work for you at all. Nothing beats being on the right dose, and even when you first get on it, it does take a while for your body to settle down.

Did you have your B12, folic acid, iron and vitamin D checked?
Are you taking fish oil?
Did you ever check out carnitine?

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
5/4/12 8:07 A

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So the alternating dose the doctor put me on still made me feel like absolute poop. I was still totally exhausted, moody, depressed, crunchy hair - you know... hypo. Even with the T3.

I waited a month, had labs ran again - and of course, totally suppressed TSH - so of course my endo goes all crazy and assumes I'm hyper even though I have absolutely NO symptoms of being hyper.

Seriously?? I'm really starting to have a major distaste for seeing endocrinologists, or any doctor for that matter who absolutely refuses to listen to how I feel. I argued - even brought research I found to back me up for why she shouldn't base my dosage on my TSH levels... so she agreed to bump my dosage back up to 150mcg synthroid ----- buuuut, she wants to cut my cytomel down to 1/4 of what it was. I can already tell you how I'm going to feel. Tired.
Exhausted. Moody. Depressed. Hypo.

I'm bringing even more research with me, citations and all from the medical journals they came from next time. And if they still refuse to see me as a patient rather than numbers on a lab test, I'm going to just bite the bullet and pay out of my own pocket to see a holistic doctor.

P.S. I tried the Ashwagandha, and I'm sure its great, but I'm just so damned hypo right now that I don't feel anything good.

Edit - And oh! In the past month, I've actually gained 5 pounds back even though I'm eating correctly. For the past 2 months, I've been losing and gaining back the 3 pounds over and over, and then I got so exhausted that I just couldn't work out anymore. My doctor said to me "well at least you're not over 200 pounds anymore".

Edited by: MMMDROP808 at: 5/4/2012 (08:10)
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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
3/28/12 9:35 P

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hey Jenn!

Thank you for the props!
I spend waaaay too much time on the internet doing research, LOL.
Trying to get some Spring time in, just planted a bunch of things and did some weeding, had to come in cuz it was dark.
This is my fav time of year!

Okay so your pics are pre-hyper that 'splains it!

Hun,that your levels are "just a little bit high" is NOT a reason.
Its a statistic. LOL
Next time your doc throws you a statistic rather than an explanation, ask: Okay, what does that mean exactly... what are you afraid will happen?
You'll get your explanation then.

Bone loss, heart problems, stressing your adrenals, feeling like you are about to jump out of your skin... those are explanations.

I think your adrenals are prolly tapped out, so mabbe try the C, the Ashwagandha, and B vitamins. I'd eat a few brazil nuts everyday for selenium unless you have allergy. Selenium is necessary to convert T4 to T3... the active thyroid hormone. I get mine at Walmart in the produce section, but I was told that Swanson Vitamins sells them. You don't want to go over 200 mcgs a day. If the pills you got have more in them, cut em in half or quarters to reduce the dose. Garlic breath means you've been taking too much...thats why I like the nuts, they also come packed with omega 3 fatty acids and protein.

Dang girl, you really have been working it! 24 pounds is awesome and I stand in Envy! That you added the kettle bells means that you didn't lose muscle... 7 inches sounds like the vast majority of your weight came off your midriff, which is exactly what you want! Yeesh snall wonder you are tired!

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
3/28/12 5:11 P

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Mzz, I swear, you must have a brain the size of Saturn! You're always such a wealth of information!!!

The pictures I actually have uploaded are pre-sickness pictures. I haven't allowed any pictures of myself to be taken since my thyroid had been removed - until just recently when I started taking weight loss progress pictures. emoticon My TED though, has been pretty stable for over a year, thank goodness! I have another appointment at UNC in July to have my eyes measured to see if they're stabilized.

The reason they gave me for lowering it was because my T4 levels were just a little bit high. I felt absolutely amazing on that dose though, wasn't feeling nervous or jittery or anything like that. I know what hyper feels like - and I wasn't feeling it. It seems like though, every single day that passed on the new dose I just felt worse and worse. Today its so bad that I barely moved off my sofa.

I was able to get a hold of my doctor though, and told them what was going on. She said to alternate doses until my next appointment. Hopefully that'll make a difference. Its just so hard to go from feeling great, to feeling like poop in just a matter of weeks.

I haven't tried Ashwagandha, but I will now. Same with the distilled water/ascorbic acid. :D I really appreciate those tips! Anything I can do to help myself on my end I will definitely try. The brazil nuts though - I just ended up getting the Selenium supplements - I couldn't find the actual nuts locally. I'll look on Amazon though, they seem to have everything.

Oooh, I have some good news also! Since the cytomel was added to my regimen in January - I've been doing Zumba an hour every day, and added in some kettlebell workouts every other day. I've lost 24 freaking pounds & 7 inches just off my waist!! I can hardly believe it! :D I was able to fit into a smaller sized jeans last week!!!!!


Edited by: MMMDROP808 at: 3/28/2012 (17:12)
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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
3/28/12 3:45 P

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hey Jenn!
Good to get your update.
There's so many peeps on the team nowadays that I don't really have time to follow up with everyone... its great when members just jump in there and share whats going on with them with the Team. YAY!

So glad you got a second opinion. Frankly from looking at your photos you look just fine to me. I wouldn't know that anything is wrong. I just see an pretty woman. That said I'm not your doctor or you...

My thoughts about the medication change, is that they do want your TSH suppressed for the cancer, but don't want you on too much, or it can erode the bone and stress out your heart. So you might want to tough it out and see if your body can adjust to the lower dose for this reason.

What reason did they give you for lowering it?
Whenever your doctor does something, you're allowed to ask them why.

: )

Have you tried Ashwagandha? Its a herb that's been in use for thousands of years, an adaptogen, meaning it supports the entire endocrine system.
I'd also start drinking distilled water to which you've added a bit of pure ascorbic acid... about a peppercorn of it to a gallon. This will supply a low dose of vitamin C to you over the course of the day if you drink from this and prepare your foods with it... C supports the adrenals and pituitary function... its 2 of the places where this vitamin is concentrated at 100s of times the amount found in other tissues.
Drinking distilled water will also free you from Fluoride and whatever traces of bacteria and prescription drugs are in your water supply.

A source of selenium is a good idea, too. I use Brazil nuts.

Here's an article I would like you to read about surgery and Thyroid Eye Disease, and another reason why you don't want your thyroid hormone levels to be too high. I am including two quotes from the article to spike your interest:

"Most conditions of TED are caused when levels of thyroid hormone are too high (hyperthyroidism). These eye conditions resolve spontaneously shortly after thyroid hormone levels return to the normal range."

and:
"Once the active and resolution phases of TED have ended, orbital decompression surgery can be used to cosmetically treat any permanent changes. However, decompression surgery is rarely needed today because of spontaneous healing. If decompression surgery is performed during the active phase of TED, which was customary twenty years ago, spontaneous healing becomes impaired. Furthermore, surgical changes interfere with healing, resulting in further abnormalities and the need for further surgeries."

From this link:

www.elaine-moore.com/Articles/Graves
Op
hthalmopathy/ThyroidEyeDisease/tabidR>/63/Default.aspx


You may also want to try some L-carnitine.
It tends to ameliorate the side effects of too much thyroid hormone.

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
3/28/12 11:40 A

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Blah! So basically - I felt absolutely amazing on 150mcg Synthroid & 25mcg Cytomel a day... but I had another endo appointment three weeks ago, and they lowered my Synthroid dose yet again to 137mcg, and said that I shouldn't even be able to notice a difference because of the T3 I take. My labs were :

Free T4 1.86(abn) ng/dL 0.82-1.77 ng/dL
TSH 0.005(abn) uIU/mL 0.450-4.500 uIU/mL
T3 157 ng/dL 71-180 ng/dL

I've been on the new lower dose of Synthroid and now all I want to do again is sleep, and it seems like that pesky cloud is back floating above my head. I'm totally confused now. I felt the best I have felt in a long time on the higher dose. Does it even really matter that much if I'm a little high in the T4 area?? I'm seriously starting to feel like these tests are totally bogus.

P.S. I ended up getting a second opinion from a Ophthalmic Plastic and Reconstructive Surgeon who is a professor at UNC Hospital for my Graves Eye Disease. He said that I'm not going blind, and all I need is lid retraction & possibly strabismus surgery to correct everything . He asked me which doctor I had seen that told me I was going to go blind, and when I told him, he just shook his head and laughed. Apparently, the first doctor I had seen has done this before.

Edited by: MMMDROP808 at: 3/28/2012 (12:19)
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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
1/14/12 12:14 P

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hey Jen!

Happy to help!
: )

Um ya operations are difficult to watch. I get very uncomfortable watching anything that involves the eyes.

That's fabulous that you're feeling better after the Cytomel add.
What good news!
I had to add it to my T4, too. Synthroid worked well for a while, but as I got deeper into peri-menopause the Bod really appreciated some T3 help.

: )
Mzzchief



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MMMDROP808's Photo MMMDROP808 Posts: 58
1/14/12 11:28 A

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Mzz -

No, I haven't asked. It wasn't something I actually put much consideration into until you asked. :D Next time I see the doctor I'll be sure to ask. I did come across a youtube video of an orbital decompression surgery - but I was only able to watch the first couple seconds of it.

Good news though! I saw my endo on Thursday, and after listening to how I've been feeling, she agreed that the Synthroid alone wasn't doing the job. We lowered my Synthroid dose a little, and added Cytomel. Whoa! What a difference in just a couple days! It already feels much more natural to me. I don't feel like I'm dragging arse all day long!

Thanks again!
emoticon Jen

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
1/11/12 1:27 P

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Jenn

Wow.
Yes I hear ya about being healthy your whole life and then BOOM.

That procedure sounds like a lot to go thru... you have my sympathies.

I can understand surgery to correct lazy eye, but "drilling holes so that the fat can fall into the sinuses"???? Why not just suction it out? Did you ask them about this already?

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
1/10/12 7:20 P

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I've never heard of that therapy before, but to be perfectly honest, its taken me 3 years to realize what rT3, & Free t3 are. When I was first diagnosed with all these issues, it was the first time I had ever really been sick excluding the seasonal cold as a child. I had never before had to question the stuff I've been told by a doctor - boy how time can change things.

The orbital decompression procedure really doesn't sound like a very pleasant thing to go through. They have to chip some bone from the lateral wall of your eye socket to make extra room, and drill some holes on the floor of the socket to allow fat to fall onto the sinus cavity for more room so the muscles and the eye have enough room to go back into place. They're also going to be doing an operation for upper lid retraction, and for the strabismus the disease has inadvertently caused. I think all the strabismus surgery will be is some pinning of the eye muscles to straighten it out. All in all, a 2 hour procedure.

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
1/10/12 6:44 P

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hey Jen!
Ya, the smoking is absolutely the worst thing for TED!
I've heard it really aggrevates the antibodies in the orbital area.
Gosh, sorry that you've got that!
My first memory of it is as a kid... one of my mom's friends had it bad.

Did you ever try acetyl-carnitine therapy (ALCAR) before resorting to thyroid removal surgery?

Whereas I know a bit about TED, I don't know anything about the orbital decompression procedure. Can you explain what are they going to do?

: )
Mzzchief

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MMMDROP808's Photo MMMDROP808 Posts: 58
1/10/12 1:52 P

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Awesome, Thanks Mzz! Glad to know I'm on the right track of thinking at least.

Supplements so far are a multivitamin for women, Biotin 10,000mcg to help with hair loss, and Selenium 200mcg. I had no idea that I could have just bought Brazil Nuts, I'll switch as soon as I'm through with this bottle.

Two Endo's ago, the doctor I was seeing thought it would be better to have a total thyroidectomy rather than radioactive iodine treatment since I was exhibiting symptoms of Graves Eye Disease. He said that it could have made it a lot worse.... but... my smoking ended up making it a lot worse anyways and now I'm looking forward to a nice orbital decompression in March. But I'm glad I quit - hopefully my other eye won't get any worse.

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MZZCHIEF's Photo MZZCHIEF Posts: 9,372
1/10/12 1:23 P

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hey Jen!

First off, congratulations on kicking the cancer sticks to the curb!
They will mess with your metabolism as well as your thyroid.

Natch you don't have your thyroid any longer, so the organ itself is no longer a concern... but for others reading that do have their thyroids and smoke, be aware that the compounds in tobacco smoke can put you into a hyperthyroid,increased metabolic state...which is what's partially responsible for the weight gain many experience after quitting. As well as causing problems for your gland.

Here's a link that 'splains it!:
thyroid.about.com/cs/latestresearch/
a/
smoking.htm


Looking at your symptoms... I agree you'd prolly benefit from adding some T3... either from a Porcine or combination Synthetic like Thyrolar, or the addition of pure T3 like Cytomel or its generic added to your Synthroid (t4) and your Synthroid dose backed off to accommodate the Cytomel. So good thinking... and do check into that with your doc!

I would suggest you ask your doc for a "free T" test (BOTH T4 and T3) in addition to TSH.
Those three numbers will tell you whats going on. You could also add a reverse T3 to see if your Synthroid is being converted into Rt3. Do these all at the same blood draw as these numbers can fluctuate widely in the body from day to day. TSH takes longer to change as a general rule.

Are you taking any supplements? Selenium from brazil nuts (if you don' thave nut allergy) is a good way to get it. Selenium helps convert t4 to t3... its part of an enzyme deiodinase that works that trick.

What caused you to have your thyroid out, if I may ask?

: )
Mzzchief

New decade. Big world.
Hello, 60!

Never underestimate the value of getting out of your own way.

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MMMDROP808's Photo MMMDROP808 Posts: 58
1/10/12 9:21 A

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I'm pretty sure this topic has been covered quite a bit already, but flipping through all the threads is really confusing for me.

Basically - I made an appointment to see my endo on Thursday because I still feel like crap, and regardless of how well I eat or how much I work out, I can't seem to lose any weight. I'm depressed, have a short fuse, seriously cold all the time, and just don't want to live like this forever. My last visit with my endo back in November, she said my lab tests came back normal, so she didn't want to change my meds. I'm not sure what the levels were, but this is what she tested - TSH, Thyroxine Free, and TT3. Keep in mind, I had a full thyroidectomy, and have Hashimoto's, and the medicine I take at the moment is Synthroid. It seems like the only time I have been able to lose any weight in the past 3 years is when I was over medicated on Synthroid...

Should I ask for other labs to be drawn? Like Reverse T3, Free T3? I'm really thinking I'm just having a problem with the Synthroid, and if I would be better off on a desiccated natural thyroid or a combination of both.

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