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TOPIC:   Second endo appointment this week... 


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YIGOBUTTERFLY
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12/23/12 4:12 P

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Dive, I have found writing down the questions I have for the doctor helps me when I go in. Otherwise I forget and leave without the information I need.

Taking charge of your health is soooooo important!

I wish you the best.

Jane



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WRINKLEFREEDIVA
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12/23/12 4:01 P

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Mzzchief...thank you so much for all of the good information! I do have a recommendation for another endocrinologist and am going to try to get in to see him in the new year. Even though it will mean a one-hour drive, one way, my health is worth it.

I forgot to mention that my endo told me that I only needed to wait 30 minutes to eat after my Levoxyl and that I could take my HCTZ at that time as well. After reading all of your posts and Mary Shomon's book I started waiting one hour to eat after taking my thyroid hormone, and four hours to take my HCTZ. My endo said that wasn't necessary. So who's right?

I believe the tests you mentioned were the ones done by my gyno, but I'm not sure. I have an entire stack of paperwork dating back to June, that details every doctor visit and lab test. I need to pull it out and see if those FSH and LH tests are in there.

You've provide me with lots of information and things to get checked, so I'm making my list and checking it twice, so that I can begin the new year with a plan of action.

Thank you so much for all the time you take to keep us informed!


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TEENYSMOM
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12/15/12 12:42 P

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Oh, I am so sorry Mzzchief & Diva.......did not mean to intrude. Please forgive me.

emoticon
Starr

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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MZZCHIEF
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12/15/12 11:44 A

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Starr
OOps! Starr... this thread's about the problems Diva's been having.

Why not start a thread on the shooting in Connecticut?
I'm sure you will get plenty of replies and you'll be able to discuss it more freely.

Just cut and paste what you've written here.
Its surely worth its own space!
: )
Mzzchief

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TEENYSMOM
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12/15/12 10:55 A

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good morning everyone. i hope you all have a great saturday.

28 families in Conn. are NOT having a good day today.

such a HORRIFIC tragedy.

even though we are several states away from Conn. our schools went on lock down after the shootings yesterday.

when i heard about the shootings yesterday, my first thought was of Columbine massacre several years ago and the federal building bombing (killing almost 200 people) in Oklahoma City in 1995.

something like this, could just as easily be any of us that it happened to.

prayers to all the families and all involved.

emoticon to everyone.

Starr

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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MZZCHIEF
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12/14/12 6:33 P

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Diva

A T3 and T4 test isn't necessary... when you are completely free of symptoms.

But when your thyroid has been taken out, and you're symptomatic, you need TSH, free T3 and Free T4.

Particularly if you are on a T4 only thyroid hormone replacement.

Here's why. A healthy thyroid makes both T3 and T4.
The cells in your body pull T4 from the blood and use an enzyme to take off one of the iodine atoms from the T4 to make T3.
If you don't have selenium in your diet, or you're just not good at converting, or you're eating soy protein, or a lot of raw goitrogens, this can be a problem.

You may want to take one brazil nut a day(provided you don't have allergy), or nutritional yeast, garlic or even a supplement if selenium's not already in the multi vitamin you are taking. The RDA is 55 mcgs... its not a good idea to go past 200mcgs for longer than 2 weeks.

IN any case, it would be good to know if you have adequate T3 before you go monkeying around with supplements. That's why its good to test.

As for your fertility status...

A FSH (follicle stimulating hormone) and LH (lutienizing hormone) test can help determine your fertility... where you are in terms of menopause.

In a fertile woman, the low estrogen in the first part of her cycle, triggers a rise in these two pituitary hormones, which signals the ovaries to ripen an egg and release it. If the egg's not fertilized, the endometrium collapses and you get your cycle.

As the ovary ages, it puts out less estrogen, too.
This triggers FSH and LH release.
But at the same time, the ovary becomes less responsive to these prompts from the pituitary, doesn't release an egg, so FSH and LH levels stay high.

So... in late perimenopause and menopause, the FSH will be elevated. Usually over 25 in perimenopause and over 50 in full menopause.

51 is the average age of menopause. Menopause being defined as no cycle for a year and then for forever after.

That said, plenty of women have their cycles far past that date.
For example, my friends mom has hers until she was 62, and my last one was a month before my 57th birthday.

I am sorry to hear about the papillary thyroid cancer. PTC is the most common thyroid cancer, thankfully its got the highest rate of cure. I would definitely got for the scan 9 months for now, but I am curious as to why they are waiting. I can only guess its because they didn't see any evidence of spread outside of the thyroid gland.

Anyways...the reason why your doc wants you on the low end of the TSH scale, and is perfectly okay with a TSH of 0.173, is to suppress any cancer that might have metastasized to your lymph nodes. A low TSH suppresses any papillary thyroid cancer growth.

Some supplements you might consider are B vitamins, and C for your adrenal glands. They use these two vitamins to make their hormones. Often adrenal glands become tapped out with stress or malfunctioning thyroid.

I'd get your vitamin D checked. Often we're low on that.
Also your calcium, since the parathyroids ( 4 rice sized glands that control calcium metabolism) are found on the back side of the thyroid gland and can become damaged or even removed accidentally when they take out your thyroid.

As for aches and pains, if they are severe, you might want to get an ANA (anti-nuclear antibody test) to see if you have connective tissue auto antibodies or lupus.

I've found that bone broths and gelatin help with aches and pains... sounds exotic, but its basically good ole chicken soup... just cooked a little longer, made with the skin on and the bone in with a bit of apple cider vinegar added to the water so that it gets the minerals out of the bones. Gelatin has l-proline, hydroxyproline and glycine, all "non-essential" amino acids that we don't get very much of in our diets. They are considered non essential because our bodies can make them. Problem is as we age, sometimes that doesn't happen as effectively as we'd like.

Whey is another good, easily digested protein that can help feed/repair your muscles after working out. You can also try a probiotic or eat fermented foods to help your intestinal health.

Organic Kale (organic to avoid pesticides... kale is on the EWG's dirty dozen list ), is a powerhouse of minerals, antioxidants and vitamins.
CoQ10 and vitamin K2 are two others you might consider for aches and pains. Apparently we don't synthesize CoQ10 as well as we used to when we were in our twenties. K2 (Mk4, Mk7) helps clear arteries of calcium.

Hope this was helpful... make sure you research and are comfortable with these things, know why you are taking them, before you go out and buy them.

Take care of you
: )
Mzzchief

Edited by: MZZCHIEF at: 12/14/2012 (18:38)
Never underestimate the value of getting out of your own way.

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YIGOBUTTERFLY
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12/14/12 7:29 A

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Sounds like you are getting what a lot of us get when we see the doctor(s). They don't know what is going on and we must be 8th grade drop outs to have a thyroid issue and not smart enough to know our right hand from our left.

Mzz has written some blogs that you may want to check out. Just go to her page and do some reading.

Jane



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WRINKLEFREEDIVA
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12/14/12 12:43 A

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So I did go to my appointment today, knowing that I wasn't going to have to pay for it; having surgery will help you meet your deductible with a quickness! I'm going to try to accurately replay here what was told to me today.

I had my blood drawn on Tuesday at about 4 p.m. and the tests indicate that my TSH level is 0.173 uIU/ml. My endo said she wanted it to be between .7 and 2 and felt that it was leaning a little on the high side towards HYPERthyroidism. (The lab paper shows that it should fall between 0.270 and 4.200. Now...I'm a 7th grade math teacher and as far as I know, 0.173 does not fall between .7 and 2, NOR does it fall between .270 and 4.200 unless I am reading this result the wrong way. (Maybe the decimal in my result is supposed to be moved one place to the right?) This discrepancy didn't even dawn on me until just now.

I asked her why she didn't test free T3 and T4 and she told me that it wasn't necessary. She drew a picture and some arrows and whatnot and told me that the TSH told her all she needed to know.

Despite the fact that my gynecologist told me [based on lab work] that I am NOT premenopausal, my endo feels that because I am 52 and my periods have been very sporadic since my surgery (I've had exactly two since its removal in June) that I must be perimenopausal and my thyroid has nothing to do with it. The same with the all of the aches and pains in my joints and muscles. She encouraged me to see my primary care physician to get to the bottom of it, but insisted that my thryroid [or lack thereof] was not to blame.

In 9 months she wants to do some special scan of the area to rule out any possibility of cancer or other problems since they found incidental papillary carcinoma when they took out the thyroid.

I have gained 9 pounds since I saw her in June, but in all fairness my eating and exercise suck big time! Since going back to work in October, my body aches more and more, and by the time I leave work (later than I should most days) I'm so tired and achy that I talk myself out of going to Zumba or Curves. A few years ago I was diagnosed with osteoarthritis in my lower lumbar but the pain seems to radiate into my hips and legs a lot. Zumba makes my back hurt more afterwards, and my feet often go numb, but the music is motivating which is why I go. While I am not the gym rat I was in my 30s, I still recognize the importance of exercise and why I need it, but the motivation is waning and it's getting really hard to lace up my gym shoes and get moving.

Additionally, my husband is Italian and the main cook in our household. He is also a very fit junk-food junkie. So while my breakfasts and lunches most days are fairly tame and free of complex carbs, anything goes at dinner time. If we're going to have salad or veggies with dinner, I have to make them and there are days when I get home late and neither the energy or desire are there to do it.

So this is where I am, 6 months post thyroidectomy, trying to navigate this new and very different body.

MZZCHIEF...I thank you and all of the other knowledgeable "roidbots" for educating and helping those of us who are new to this disease.



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MZZCHIEF
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12/13/12 1:47 P

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hey Teeny!

Good to hear that you had a terrific day yesterday.
Its super when we have them, but on the other hand, it kinda makes me envious of the "normals" who have that kinda day 365 days a year.

Do you drink coffee, tea, or carbonated beverages?
If you do routinely and stop or don't get enough caffeine that day, it can cause a mild headache.
So can not getting adequate water... something to remember now that its not blazing hot anymore.

I would be interested in hearing if the chiro helps your symptoms.
Our spines are critical in keeping the body healthy and able to move properly.
I do yoga and pilates to keep mine flexible. Since I'm older and have scoliosis, not exercising isn't an option for me.

When you get your thyroid dosage right, you will have less aches and pains.
As for your doc asking you if you'd been taking your thyroid meds, that's one of the questions they have to ask you when your dosage is adequate for your height and weight, but there isn't much thyroid hormone in your blood. Believe it or not, plenty of patients DON'T take their meds, or they do stuff like take them with a cereal with a full days worth of vitamins and iron, bathed in soy milk, thereby blocking the thyroid medication absorption.

Have a fun day!
: )
Mzzchief

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

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TEENYSMOM
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12/12/12 7:17 P

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Hello there to everyone.......Happy Wednesday.

Went and picked up DD from work then had to drive out to the other side of city to pick up prescriptions from doctor office. Now I have to send the hard copy to my refill pharmacy in Denver Colorado. I will get the medications back in about 21 days. I wish that it did not take sso long to get them back, but that is the military for you.

Wow, I have actually had a emoticon day all day today, mentally & physically. Except for a mild headache. I don't understand how every once in a great while I will have a whole day where I am feel good. Usually it is only part of a day that I feel good, if I am going to feel good at all. Now don't mis-understand me......I am THRILLED to have good days. I just don't understand why they cannot happen more then every once in a blue moon. Do you all know what I mean?

DD & I are getting ready to go to church here in about 45 minutes. This actually makes the 3rd Wednesday in a row that I have felt good enough to go to church on Wed night. emoticon

Tomorrow my brother is suppose to come over and spend at least part of the day with DH. But that remains to be seen.

I have an appointment with a chiropractor tomorrow afternoon, the first in about 2 years. I am in hopes that he will be able to elevate at least a bit of my normal everyday pain.

And I got a call from my Endocrinologist today. They got the bloodwork back and the doctor is saying that I need to increase my Thyroid medication dosage. Even though when I was in his office 6 weeks ago, he said that he almost guaranteed that the last dose was going to be as high as I would need to go. This same doctor actually accused me of not taking my Thyroid medications as prescribed, that is why they were not working. Well, my lab tests this week proved him WRONG!!! emoticon

Ok, gotta go get ready for church.

Hugs to all. emoticon
~~Starr~~

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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MZZCHIEF
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12/11/12 12:31 P

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Girl...

It is SO time that you get a doctor who doesn't blow you off.
I would also recommend, going forth, that you request a copy of your bloodwork and keep it in a health binder.

That way we'd know what your doctor considers a "normal" TSH.
The range is wide, and if she's using the old numbers, you could be severely under medicated.

If it were me, I would cancel my Thursday appointment.
Why spend another minute, another dollar with someone who will take your thyroid out, but won't give you a proper test? WHEN you have symptoms, no less. Its just nutty.

Find yourself a doctor who will listen to you.
Its not necessary to go to an endo... its not the degree on the wall,(as you found out) its the degree by which your doctor listens, diagnoses and prescribes the proper cure to elevate your symptoms.
Endos are expensive and most of their practice concerns diabetes management.
Not thyroid.

A place to start looking is at your pharmacy. Ask your pharmacist to give you the name of a few doctors who prescribes Cytomel (t3, the active thyroid hormone) or one of the "natural" thyroid hormones like Armour, which more correctly are called "Porcines" because they are sourced from pig thyroids.

As an FYI, even when you are balanced on thyroid medication, its going to be difficult to lose and maintain your weight... that's a given. But the chronic joint pain and myalgia, swelling of the feet, THAT's not normal and is a symptom mismanaged thyroid disease.

I'm sorry to hear you're having to go thru this... my advice is to put some effort into finding a new doctor... painful short term but with long term benefits.

Go get 'em!
: )
Mzzchief

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

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ROMANTILLY
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12/11/12 9:45 A

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Yes. The TSH is not always a good indicator of Thyroid Function. Some docs don't even do it anymore. My TSH always tested fine. My T4 and T3 are what tested low. Either demand the tests, or change endos.

Lisa L. South, RN


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YIGOBUTTERFLY
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12/11/12 3:11 A

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From "I can't lose weight,..." is how I have felt recently. The doctor did up my Synthroid from 150 mg to 175 mg a couple of months ago and wants me checked for sleep apnea, which I know I have but I am not buying that machine. I also have brain fog where I have forgotten what I should be doing to help alleviate some of my problems.

Changing endo's may help you. Go in with your questions written down and make sure they are answered.

Jane on Guam



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WRINKLEFREEDIVA
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12/11/12 12:23 A

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I had my thyroid removed in June and had one follow-up appointment with my endocrinologist at which time she prescribed Levoxyl. Approximately one month later she made me do another blood test and decided to keep me on the same level of Levoxyl. I now have an appointment on Thursday for follow up and called in to verify that she wanted me to have lab work done and asked if she would test my T3 and T4 . The message that was left for me today by her nurse was that she didn't feel it was necessary to test the free T3 and T4 at this time; she was only going to do the TSH test. I'm wondering if I should be concerned.My periods are far apart (according to my gyno I'm not premenopausal), I can't lose any weight , have chronic pain in my joints and muscles, swelling in my feet, I'm tired all the time and basically just feel kind of lethargic. Is it time to look for a new endo?


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