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Old 12-01-2016, 03:25 PM   #31
shelley
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Tracy....so happy you are doing so well. I just got a call from the nurse at the NP's office. I got my labs. Not a big surprise. The first time I was put on Cytomel only was 30 years ago when my TSH was 1.84 and I was a total useless slug. So, I'm one of those that needs the low TSH to feel normal. Way below 1.

Anyway, here we go:

TSH 3.8 (range .04 - 4.5)
FT4 .9 (range .8 - 1.7)
FT3 2.2 (range 2.0 - 4.4)
Thyroglobulin Antibodies (the first time I've had this test...always was TPO/AB before and no antibodies) >1 (range 0.0 - 0.9)

I asked what I was to do now and she said that the NP felt I was complicated and out of her area of expertise, so she wants to be seen by the Endo and asked when my appt. was. A week from tomorrow, Dec. 9th. She said that if I am really dragging, she thinks it would be okay for me to take 50 mg of NatureThroid. Really??? She said that's such a low dose that I should be fine with it. First of all, I "think" it's mcg and not mg, but that's okay as I know what she means and maybe I'm the one off on that. But a grain is 60 mg. I have been taking 1.5 grains for the last few years, prior to that only 1 grain for nearly 30 years. So, not a lot less than "normal" for me. She knows this.

I have opted to take nothing for the next week so that if the Endo wants more tests done, I won't have anything in my system. If I can do this for 6 weeks, I can surely do it one more.

I don't know much about the thyroglobulin antibodies other than what I have recently checked out...they are checking me for hypERthyroidism and Graves. I don't have that. I knew I didn't. And the "web" says that a level over 1 doesn't mean you have thyroid cancer, but it's a "marker" that Endo's like to test with. She/Endo does NOT test with TPO/AB.

So, at least I know that I am HYPO. TSH way higher than I do well with, and the FT4 and FT3 are nearly the bottom of the range. Not mid, not 3/4 of the way up. Nothing for good health in MY opinion.

So, that's where it stands now. She wants to keep me as a patient and will do my BHRT and health issues, but is afraid of the thyroid as she doesn't feel it's straight forward with the test results skewed. Fine. Not happy about it, but I'll move on and see what this Endo is about. I'm not encouraged, but 2 people I trust think she's great. One is my former neurologist.

I'm now getting excited for next Friday to see what this woman Endo has to say. Wouldn't it be grand if I got someone really good?? h a ha ha I'm a comedian today.
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Old 12-02-2016, 11:53 AM   #32
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Holy cow. Your thyroid is scraping the bottom of the barrel
I bet you feel like crap. Literally. And I bet you can't.. well.. go to the bathroom. Jeeze. And 50 mgs?? What is that supposed to do?

I am not excited for you and that endo They really don't seem to get the thyroid either...

If you go to Amazon and look up thyroid supplements, you can look at the user reviews and get an herbal concoction that will help while you wait to see the doc... ive done that...out of desperation!

Im sorry. I hope you get to feeling better soon. I am surprised you are getting in so quick to see the endo.. typically if he or she is really good you will wait months....

Keep us updated
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Old 12-02-2016, 04:24 PM   #33
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Hi....great news to report. I swung by the NP's office to pick up my hard copy of my test results (I have all tests for everything back to 1985 for my health...I'm rather a fanatic and do know what I am doing).....I thanked them and went to the car and looked at it for myself. Well, guess what. All the results were correct with one exception. The Thyroglobulin Antibody test to see if I was heading to thyroid cancer and ablation was not > 1 but it was <1! LESS than ONE. I didn't have any of the bad antibodies to say I had cancer. So, hooray. My tests show that I'm hypothyroid, and rather a classic case. Should be VERY simple. Which it has for me for over 30 years. This is the first time I've been challenged with my meds and told I was hyper. What? I'm a slug. Anyway, I have meds. Not the problem right now. I have a years Rx for them and the NP could not cancel that, so that's not a problem at all.

Re: the Endo referral. I got it about 3 months ago and have been waiting and on a list for any cancellations (none). So, now it's only one week from today. My husband insists I wait just one more week before taking my Nature-Throid so that if the Endo wants different tests for whatever reason, I won't have anything in my system to raise the levels to be more mid=range.

One thing that has helped me immensely is large doses of omega-3's...the IFOS 5* ones. Nice and safe. Amazing for my "depression". I"m pretty excited to have made it this far in this journey and really can't wait to listen to the Endo to hear what she has to say. I have no problem challenging her knowledge. I have done this with the NP and both her nurses already. I have been proven correct with all tests and they still think I'm too complicated to deal with. DUH!

I am so happy the antibody test was <1 instead of >1 that I'm nearly giddy!!! Such great news to report.

Leo...you're awfully quiet. Want to weigh in on my latest results and your experience with your Endo? I know you don't like NP's, but where I live, I don't have any other options. I'm driving 90 minutes each way to the one and only Endo, and all other doctors here will not Rx T3, but just Synthroid alone. Believe me, I've exhausted my search for doctors here.

Hope everyone has a great weekend. I'm going to be very happy!
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Old 12-02-2016, 08:29 PM   #34
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that's awesome news Shelley, so relieved for you! Looking forward to the next update.
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Old 12-03-2016, 05:56 AM   #35
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Shelley-
I think I told you from the beginning that this NP didn't know anything about thyroid treatment [based on your report of her comments], and that your low TSH was perfectly normal for someone on thyroid Rx.

I haven't posted to you recently because I've been appalled that the NP took you off all your thyroid Rx for 'tests.' I have never heard of that, but what I have heard is that once you are taking thyroid hormones, you can change brands, dosage, etc. (as needed), but you should never be 'off' the hormones because your body has adjusted to them. I think your body has been through unnecessary stress because this NP is clueless about thyroid treatment.

Now that she's admitting this and referring you to an endo, I wonder why she didn't do that at the beginning when she failed to understand your labs (as I told you) instead of putting you through all this.

These labs are totally normal for someone who is hypothyroid and been deprived of her supplemental hormones--higher TSH, and hormone levels very, very low. They provide no info about whatever problems you've been experiencing.

I hope you have better luck with the endo.
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Old 12-04-2016, 10:38 AM   #36
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Thanks Leo, I too hope the Endo will enlighten me, but I"m not holding my breath. My neighbor goes to her and has been on Fosamax for 5 years and now on those yearly injections due to a low DEXA test (which is why I have been referred to her...for my bone loss).

I'm sad that you were right about the NP not understanding thyroid....but she "is" the only one that Rx's NDT here. But it truly makes me wonder why others are getting it and I"m not. Surely if they are on it, their TSH levels are low as well??? But I think it has more to do with my bone loss than anything else. Guess I'll find out eventually.

I'm sort of "excited" to see what the Endo has to say about all this. I"m not your typical hypo person as I have no antibodies/Hashi's and never have. Remember nonstickpam? She told me in a private email that she didn't think I was hypothyroid, and that "something else was going on". Which is the same thing the NP said. I"m actually surprised my TSH was only 3.83 as I've been as high as 6.33 in a past testing only being off meds for 3 days!

I don't understand the HPA axis stuff at all, and apparently that's what "some" have told me could be my "issues". Don't know.

The NP is excellent....but apparently not for thyroid, as you have said. I"m disappointed in that. But she is the only one who was 100% on target with my health after my car accident 2.5 years ago. It took 2.5 years for many MD's and specialists to finally give me the same diagnosis that she gave me on that very first day! So, she's good at "medical". So, I still give her great credit....but unfortunately not with thyroid, as we all now know.

She referred me to the Endo the day she got my DEXA test result. But since there is only one within 3 hours drive each way, the Endo was backed up for 2-3 months, thus how long this is taking to be seen. I just want the Endo to tell the NP to keep on letting me have my Nature-Throid and to do bone building exercises and supplements. I will not take biophosphates! No way. So, the appt. is this Friday. Should be interesting as I'm sure most patients who come to her have no experience with thyroid info at all. So, they do what she will say. I won't. I won't take biophosphates for my bone loss, won't ever ever ever take Synthroid again (that was a nightmare), and I know how to read tests and what they mean (other than the HPA axis stuff). We shall see. Maybe I'll be surprised!!???
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Old 12-04-2016, 11:01 AM   #37
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Shelley-

Do you remember why nonstickpam thought you are NOT hypothyroid?

As to the bone loss, I agree with you about not taking any biophosphates--I've read that they do more harm than good. I have a friend who has been on Fosamax for years--and has had several fractures.

That hasn't been an issue for me because my own bone loss has been minimal, and less than might be expected for my age.

I've wondered whether that might be one benefit of my lifetime of morbid obesity--i.e., did having to lug around all that body weight strengthen my bones?
Also, unlike some fat people, I never ate junk but a very healthy diet--although to excess:-)

Since my osteoarthritis keeps me from most weight bearing exercise, I do resistance exercise on my health club's machines. It's supposed to help with bone strength.

It's good that you will see this endo as an 'informed' patient. I've had so many 'issues' with doctors over the years that I am very pro-active about my health care. And I think that everyone should be.
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Old 12-09-2016, 05:33 PM   #38
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Hi all...I'm back from the Endocrinologist...1 hour of constant talking/sharing, etc. and hubby was with me to help me remember everything and anything (he knows as much about thyroid and testing that I do...he has no choice after me being on meds for over 30 years and all the moves we've made and trying to find new doctors for me - ha ha ha).

Leo, to answer you. Nonstickpam thought I was not hypothyroid because I always did well on T3 only....Wilson's Syndrome and RT3 protocols. I could take up to 150 mcg of T3 a day and have absolutely no negative reaction (felt good but not hyper at all and not super good..just good). She told me to have my parathyroid tested and I did. Normal. Then she said she didn't know other than something else seemed it would be the issue. Nobody has ever figure it out. The NP is the first medical person who thought the same way nonstickpam did and thus the referral....and again, no answers other than I'm not hypothyroid and I'm hyperthyroid but do better on hypo meds. Thyroid is fine. No nodules, swelling, etc. Very normal.

So..endo appt. was not what I had expected at all. It was 2 prong....first for thyroid and 2nd for bone loss.

She said a TSH less than 3.0, even *with medications* was hypERthyroid. Medications can't lower TSH that low unless you are hyper. I guess I must have rolled my eyes. She said she knew that I was not going to agree with her about thyroid and bones, but wanted to explain the medical reasons. I guess she spoke to my NP! ha ha Anyway, she went to great lengths to tell me that she doesn't go by naturopaths/homeopaths/anti-aging/alternative MD's or books about thyroid issues at all, but only for the training in medical school and the 2 published things for endos on thyroid. i..e, synthroid only, and only if the TSH is usually 10-15 or so. She did say that my tests were bad for the TSH which indicates hyperthyroidism, and that's the only test that counts (typical Endo), and that my FT4 and FT3 were "in range" and normal. I told her that they were both at the bottom of the range. She asked how much NDT I took and I told her 1.5 grains/day (split 1/2 AM and 1/2 after lunch). She agreed that those tests were low, but that she goes by TSH only. She doesn't even order FT3 testing unless requested (I was not surprised by this). I gave her a blank stare and she took off her glasses and told me that she was getting the opinion that I didn't agree with her. I smiled and said "correct". She explained that she'd been doing thyroid for 20 years. I told her I'd been doing it with various doctors and Endo's for 30 years and felt well optimized with absolutely no sign of hyperactivity in any part of my body. All my tests that were just done showed I was at the low end, my BP is low, my heart rate is low, my temperature is low, my iodine radioactive loading tests were low...only the TSH was not where she wanted it, and that was low due to supplementation. She totally disagreed with that statement. Anyway, she said that me feeling well for 30 years optimized on 1-1.5 grains of NDT would tell her that we were "even" in our knowledge of thyroid and my knowledge of what we discussed and of how I feel in my own body. (and believe, me, I'm not skinny!) She said I could continue on what I was taking with one exception....bones! She was determined to make my thyroid supplementation all about my 17% bone loss in the last 5 years which was alarming. She went on about the various biphosphates, injections, etc. and told me that she figured I would not take them. I agreed. She said the last woman she just saw wouldn't either. I pulled out my "My Bones" book and my Pilates for bones DVD and told her that with supplements and these, I wanted to try these protocols for 2 years and retest. I had built bone before on the 1.25 grains of NDT, and I wasn't doing any weights or heavy exercise now for 2.5 years due to the accident, and I felt the bone density loss was due to me not being able to exercise as I had done for 65 years! Again we respectfully and graciously butted heads with smiles and total disagreement.

Bottom line: She's fine with me continuing on the 1.5 grains of NDT and re=testing in 6 weeks, and for me to do the follow up DEXA in 2 years and if I'm worse, then I need to face the music.

Then she said she had a 12 question FRAX assessment for fracture risk within the next 10 years....she plugged in my age, height, weight, history of smoking/drinking/drugs (NONE) and my family history of fractures, etc. She got the results and my scores for both areas (lumbar and hip I think) and both were in the "safe zone". She gave up! ha ha She said that she felt in 2 more years I would be out of the safe zone. I disagree, but just smiled.

So, I've spent 7 weeks and many tests and appointments to go right back to where I was. But she still insists that my TSH score indicates that I am hyperthyroid at less than 3.0. Without medication, it was 3.8+ and that means I'm normal in her eyes.

She won't treat below 3.0 and only treats with Synthroid. I do not have a follow up. She's writing a note to the NP to tell her to let me continue on what I was taking. She did say that thyroid meds greatly impact the bone density in a very negative way in women as they age, and since I'm 68, she expects I will have more bone loss, and that exercise and supplements will not increase bone mass...only biophosphates and injections. I plan to prove her wrong.

So, there you have it. I"m going to do more research on T4/T3/NDT/Synthroid, etc. and bone loss.

Question to Leo....when does your Endo have you test and with what meds in your body and for how many hours? Nonstickpam always said 3.5-5 hours after 1/2 of your daily dose would give you a peak/good level of everything. I know T3 has a half life of 8 hours and T4 is 2 weeks. So, since you take T3 three times a day and I assume your T4 is AM only, what do you take and when do you test after taking that amount for your Endo to evaluate? I think it makes no difference with the FT4 reading, but I think the TSH and FT3 readings would be vastly different if you took the NDT or T3 meds and tested 3.5-5 hours later vs. not taking them the morning of the test at all, and testing that way (as many docs do).

Your thoughts? Endo said it "didn't really matter". Again, I respectfully disagree. Would love your thoughts.
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Old 12-10-2016, 03:20 AM   #39
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Hi Shelley-

You have my sympathy if this is the best endo available to you, and you've quoted her correctly.

1) If she is claiming "a TSH less than 3.0, even *with medications* was hyperthyroid," she is terribly confused. I'm no physician, but, like you, I've had thyroid issues for many years and have read a LOT.

A 'normal' TSH is 1.0 to 3.0 (average person, no Rx). For years, hypothyroid was considered anything above 5.0, but several years ago the national org. of endos changed that to 3.0. Good endos will treat someone with a TSH above 2.0 if the T4 and T3 levels are very low, and the person has symptoms.

Once a person is taking supplemental thyroid hormones (Rx that is NOT considered 'meds'), endos like to aim for a TSH of about 1.0 as an indication that
the dosage is correct. However, as I've pointed out to you, taking T3 drives that even lower. On my last labs in Sept., my TSH was 0.02, and my endo had no problem with that--I have NO hyper symptoms at all.

Personally, I would never go to anyone who treats on TSH only. That makes no sense because T3 is a critical issue, since it's T3 that runs the body. I've become especially aware of this since my 'conversion' problems developed, and I realize how much my T3 level is important to how I feel and function.

2) As to testing, my endo has never made any comment about taking my thyroid hormones prior to testing. I take my Synthroid in the middle of the night, but that's never a problem because Synthroid works so slowly in the body that taking it or not would not make a difference in a blood test.

I normally take my first Cytomel dose when I get up in the morning, which is usually between 3 and 4 am. My labs are usually scheduled for about 9 am. If I wasn't having labs done, I'd normally take my second dose about 7 or 8 am, but days when I'm testing, I skip that dose until after the blood draw.

Again, when there have been questions about my T3 level, my endo has never asked when I took my last dose, so I suspect it really doesn't matter. I have my next appointment in January, and I plan to ask him about this because it comes up very often in thyroid discussions.

People always talk about retiring to different areas because of climate, but I'm happy to be in the NYC region because of the options for good medical care! There are many poor endos here (my sister has consulted a lot of them), but it's also easy to 'shop around' for a good one. My sister now goes to my endo, even though it's a long drive for her (as it is for me) because from my experience, she realizes it's worth it.

As to bone loss, my endo usually checks me every 3 years (I think that's what Medicare allows), and I'm due soon, but in the last year, I've had a couple of hard falls, and no bones have broken--which I regard as a good sign.
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Old 12-11-2016, 10:04 AM   #40
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Hi Leo, Thanks for taking the time to put all your thoughts into your post. I agree with you 100%.

We didn't move here for the climate (it's snowing now and is to be -1 overnight without a wind chill) but for the quality of life. I'm in far north Idaho, nearly into Canada and it's very isolated. Unfortunately, it's not near a big town and most medical wives love social activities, opera/ballet, etc. where they can dress up and feel important, so if a doctor does move in, they are usually "outta here" within a year or two. The wives hate it here. We live in casual clothing and dressing up is a clean pair of jeans (maybe). (Think Montana and that's like us).

Anyway, this woman is the only Endocrinologist north of Boise, an 8 hour drive. I have gone to 2 wonderful doctors in WA State, but both retired in the last 5 years and so I've been trying to find a new doc all this time. Most existing ones do TSH only testing and only Rx Synthroid and more importantly are not accepting new patients. So, I'm sort of in a bad situation.

I love all the posts on this thread about people doing well and having TSH numbers under 1.0 and many under .5 or even lower and their doctors, even Endo's, being fine with that. I also know that I've had DEXA scans done since 1997 and was on nearly the identical dose of Armour all this time (1 grain to 1.5 grains/day) and my bone density has done the typical thing for someone "old" like me (and you), and that's to drop a bit each year, although one year I gained! So, who knows. I still think it was a faulty test result! :-) Unfortunately, I'm a retired ballet dancer/teacher, so I am paying now for years and years of abuse to stay very thin.....would would have guessed when I was young that this would be the result of being so thin and "fit".

Bottom line for me is that the Endo didn't want to see me again which is fine with me. Anyone who refuses to look at any literature unless it comes from the Nat'l Endo Society and only does TSH and doesn't believe in any T3 readings is NOT someone I care to see again. She wouldn't even look at the book I brought to show her about bones that is new. Didn't give it a glance. She's very closed minded. She's the "old school doc" that feels it's her way or you are an idiot. But she did respect my opinions, even though I did not agree with her. And then I was dismissed....very nicely though.

She's with the largest hospital in the area, so I feel sorry for those who believe what she says and are not getting proper treatment due to lack of their own advocacy over their own bodies. Everyone is sent to her. Sad.

I started back on my NDT Friday the minute I left her offices. I know it will take a while, but I already feel a bit more like myself. i used to stop and be winded (air hunger) walking up the stairs, but today I just went right up and didn't even think about it. Maybe it's just the "bit" of T3 kicking in for me. I know that reacts quickly for me (and is pretty well gone after about 6 hours in my body). One grain is not a lot, but it sure works for me. Like you, I"ve been doing this long enough to really know/understand/feel changes. I don't have any antibodies (lucky me!) so have been on the same dosage pretty much for over 30 years. It's "just enough" to feel human. Not enough to "overdo" and cause other health issues....until now! But I don't think 1-1.5 grains of Armour is going to be the cause a 17% loss of bone in 5 years. I'm just not buying that one.

So, I'm back on track with my meds and will follow the bones protocol of a friend who was in a study and she gained 3% bone in the first year. The Endo said this is impossible when I told her. Closed minded doctor!

I can't thank you all enough. Now if I can just lose the 10# I've gained in the last 7 weeks of being off my "puny amount" of thyroid meds! :-) I think that bothers me the most. 1-1.5 grains/day is hardly a huge amount to be concerned about....but it's what makes me feel human.

Thanks again everyone.
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Old 12-15-2016, 10:58 AM   #41
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Hi....I just finished a highly recommended book that is about thyroid. I'm not sure if I can tell you the name or author as I once got bumped off one of these forum websites for mentioning a website/link where to get blood test.

Will some please advise if we are allowed to post the name of a great book and a great author? I really loved it and it gives all "optimal" levels of tests and not just "ranges" that are "in range", but what is optimal. She also is not in favor of any one method of dosing as each body is different. It was a great book.

Hope I can share the name/title/author.
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Old 12-15-2016, 02:08 PM   #42
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Originally Posted by shelley View Post
Hi....I just finished a highly recommended book that is about thyroid. I'm not sure if I can tell you the name or author as I once got bumped off one of these forum websites for mentioning a website/link where to get blood test.

Will some please advise if we are allowed to post the name of a great book and a great author? I really loved it and it gives all "optimal" levels of tests and not just "ranges" that are "in range", but what is optimal. She also is not in favor of any one method of dosing as each body is different. It was a great book.

Hope I can share the name/title/author.
You can share the name/title/author. I am anxiously waiting
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Old 12-15-2016, 02:26 PM   #43
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Shelley-
I would be suspicious of anyone who 'knew' the optimal thyroid hormone levels for everyone because, in my experience, it differs by individual. I know on the famous thyroid board that everyone quotes, and when she was here nonstickpam repeated it, supposedly the 'optimal' level of T3 is to be in the top third of the range.

But my T3 is always below the half point of the range, and I feel fine at that level. To get it higher would be problematic, since I take supplemental T3 (Cytomel), and too much could cause cardiac issues. Since I feel great and have no symptoms, that T3 level is 'optimal' for me.

If the author admits that 'each body is different,' how can a specific level be 'optimal' for everyone? Perhaps I misunderstood your post?
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Old 12-15-2016, 04:04 PM   #44
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Well, I hope it's okay and I don't get bumped off the forum.

This book was an amazing read for me. It's by a doctor named Amy Meyers, MD. The book is "The Thyroid Connection". She also wrote "The Autoimmune Solution". I don't know her and have no connection to her or to the book sales. I have heard her on a few webinars and was impressed so I bought the book online. I'm glad I did.

Leo, she definitely does not say what is best for everyone, quite the opposite. She is very careful about stating that each body will be different in what they will tolerate, what type of formulation (Synthroid only, NDT by various companies, compounded T4/T3 combos, and Synthroid with T3 (like you take, Leo) and that each person will be different in what is best, what fillers work/don't work, etc. and that it takes time.

Her "optimal levels" are in "general" for those reading the book who are told they are *just fine and in range* because their tests show that they are "in range". But perhaps the patient still feels unwell. I'm a classic example of this in the last 2 months of being told I'm in range, and since I have a low TSH, that I'm hypERthyroid. Wrong!!! I am in the low end of FT4 and FT3 and high end of TSH. But she explains how this happens and why I don't do well at these levels when someone else might feel great.

She explains why doctors and Endocrinologists who "don't get it" are not always correct, and that you have to follow not only the symptoms, but the numbers. This gives them hope and a guideline. Her medical background is really impressive.

I have read a lot of books on adrenals and thyroid, and this one really spoke to me and had lots of common sense for those of us who have been doing thyroid for years...and for those new, it gives you some really good guidelines on what tests to ask for, what they mean/how to interpret them, etc. (ie., FT4 is storage and FT3 is what's available for use, the 2 antibody tests and what each does/means, etc.) and things a newbie wouldn't understand or even know about.

She goes over all sorts of supplements and what they are for, which was really good (and how to pick quality ones). What helps to convert T4 into T3, etc. Lots of really good information. It's a book really about a 28 day plan to get healthy and has recipes and all sorts of things, but the information alone is worth the price of the book. My opinion, of course.

And yes, Leo, I totally agree with you, and so does Dr. Myers. "Optimal" is individual, but for "most", she gives her feelings of an optimal range and it's not at the bottom or top of the range unless you feel great at those levels with doctors guidance.

For example...when I was going through the RT3/Wilson's syndrome protocol under a doctors care (who knew thyroid, but unfortunately retired), I was taking 150 mcg/day!!! Yes, that's not a typo. And my FT3 reading was barely above range. I have a really good friend that has heart palpitations if she has 2.5 mcg of T3....she can't tolerate any! We are all so very different. As we "in the know" believe....we are all different...but this is just a great book with fabulous information in it. And it clearly states that if you have a doctor that sees a low TSH and freaks out (like my NP and like the Endo I was referred to), it's very likely because of taking supplemental T3 and not "just T4". T3 does suppress TSH readings. That was what I was looking for....and having it writing from a specialist is just what I wanted to take to the NP to show her. but it has lots more than just that little tidbit.
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Old 12-16-2016, 03:34 AM   #45
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Shelley-

I checked out the book on Amazon and agree it might be helpful for someone who is not getting good thyroid care--and doctors who provide good thyroid care seem to be relatively rare.

I'm fortunate now if having a great doctor (although I remain pro-active in my care), but I wasted 5 years listening to my inept PCP who kept insisting I didn't have any thyroid issues--while my symptoms escalated. I was a mess when I finally self-referred to an endo who instantly diagnosed and treated me.

I hope you have success in using this book to get better care.
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Old 12-16-2016, 03:52 AM   #46
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I checked out the book!

Also on her web site she is another that is selling her products - supplements, etc!

Isn't there any site that gives good info that is not also selling stuff?????
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Old 12-16-2016, 04:10 AM   #47
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Thank you Shelley for the book info!
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Old 12-26-2016, 04:26 PM   #48
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Shelley, I realize I'm a little late into the game and there are some long posts which I confess I skimmed very lightly so maybe this issue has already been discussed but I think I can answer one question that cropped up about why you want to totally suppress TSH when you're on thyroid.

Simply put, there is no such thing as "supplementing" certain hormones in the human body. Our bodies will just ... well, be lazy and stop producing their own, is the best way to put it. Specifically, this is a problem that crops up with thyroid and testosterone. A "hormone smart" doctor knows this, one who has undergone certain training (can't tell you which school of thought, though). However, this philosophy completely goes against conventional medical training (as you've discovered).

When I went to a new GP she didn't understand why my TSH was totally suppressed, either. She wondered if I had severe thyroid disease. I told her "that's the way my endo wants it" and she accepted that.
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Old 12-27-2016, 10:37 AM   #49
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Thanks Avocat for your input,

Unfortunately I can't find any doctor, even in 2 large cities over 2 hours away from me that Rx anything but Synthroid and test anything other than TSH. My NP did the same your new GP did, freaked over a low TSH. This NP is smart and she wasn't about to accept what I was telling her and showing her in literature. Not much I can do about it. I don't have other options. Homeopaths/Naturopaths in my state are now allowed to Rx, and they are the ones that usually understand. No DO's or integrative health providers within over 8 hours drive either.

I'm not sure I agree that "there is no such thing as supplementing hormones" that are deficient in the human body. I think age has a lot to do with diminishing hormones and perhaps you are young...I am not (either is Leo....tee hee hee...sorry, Leo)

Re: the book. It's just something to take to a doctor (like my NP) to show her a professional who understands and to show a written book by a MD who gives reasons for low TSH and where her idea of "optimized" numbers should be. Many of us are not even close to optimized and are told "you're fine, you're in range". Wrong!
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Old 12-29-2016, 09:37 AM   #50
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I'm not sure I agree that "there is no such thing as supplementing hormones" that are deficient in the human body. I think age has a lot to do with diminishing hormones and perhaps you are young...I am not (either is Leo....tee hee hee...sorry, Leo)
Well, I'm staring down the barrel at 52 shortly and my husband is about to turn 63 ... I've sort of discovered my definition of "young" revises every decade or so

What I meant by the "supplementing hormones" comment is that, according to my doctor, when you supplement with certainhormones our body automatically down regulates the production of those hormones correspondingly. I'm on HRT myself, so in addition to Armour thyroid I'm also on estradiol and progesterone (I can't take DHEA or testosterone myself, causes massive hair loss). The progesterone and estradiol production don't seem affected by supplementation but thyroid yes. Contrarywise my husband was on testosterone therapy (had to discontinue due to unrelated health issues) and his own production was suppressed while he was on that therapy.
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Old 12-29-2016, 11:19 AM   #51
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Downregulating may be true for some hormones, but when we are hypothyroid, the dosage is designed to provide the hormones are bodies are no longer producing. The symptoms of hypo that people experience are due to the low level of thyroid hormone in the body.

The thyroid doesn't produce less hormone because of the supplementation. For many of us, the dosage increases as our thyroids become more damaged.

That's the reason we need this Rx for life; our thyroid glands don't make sufficient hormones for our bodies. And thyroid hormones (T3) basically run the body by controlling metabolism.
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Old 01-28-2017, 11:49 AM   #52
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Hi all...7 weeks later and I finally had another blood draw done to see how I"m doing on the same 1.5 grains of Nature-Throid that I was at the first test.

Results: TSH .081
FT4: 1.09 (range .82 to 1.77)
FT3: 3.0 (range 2.0 - 4.4)

They are saying once again that I'm over medicated! Good grief. The latest thyroid book by an MD who does thyroid says minimum for FT4 should be 1.1 and FT3 should be 3.2. Minimum!

Trying to find another doctor.
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Old 01-30-2017, 01:56 PM   #53
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Hi...just got a call from the Endocrinologist's office and they have my test results. The Endo says I'm "over medicated" and that I need to reduce my dose to 30 mg/day and retest in another 3 months for re-evaluation.

I am so tired of this. She is the only Endocrinologist in our state unless I drive 8 hours to the "other end". The doctors and NP's here only want to refer people now with low TSH scores. I am guessing that there is new pressure about only treating via TSH for doctors?

I've done lots more research and all those "in the know" say that the addition of T3 via pure form along with T4 or any NDT that has T4 and T3 in it, will have a low TSH, and sometimes nearly 0.00, depending on the patient, and the only way to test is FT4 and FT3.

As a reminder, testing without any NDT showed:
TSH 3.8 (range .04 - 4.5)
FT4 .9 (range .8 - 1.7)
FT3 2.2 (range 2.0 - 4.4)

So, with 1.5 grains, my FT4 rose to 1.09 and FT3 rose to 3.0. Dropping 2/3 of my meds is not going to have me at the bottom of the barrel again. I guess I'm going to have to get on an airplane, pay for a hotel, and find someone who will treat me from afar if I come in once in person. This is so sad. What does a person do who has absolutely no idea that TSH is not the way to test? They are doomed. At least I understand and know. But now to just find a doctor/DO to help me out.
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Old 01-30-2017, 06:12 PM   #54
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Oh my...just got a call from Walmart pharmacy...they had to "special order" the Armour that the Endo Rx'd for me. First of all, I don't take Armour, but Nature-throid, and secondly, my new prescription is for 30 mg. Armour per day. I told her to cancel the order.
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Old 02-03-2017, 05:21 AM   #55
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Originally Posted by shelley View Post
Hi all...7 weeks later and I finally had another blood draw done to see how I"m doing on the same 1.5 grains of Nature-Throid that I was at the first test.

Results: TSH .081
FT4: 1.09 (range .82 to 1.77)
FT3: 3.0 (range 2.0 - 4.4)

They are saying once again that I'm over medicated! Good grief. The latest thyroid book by an MD who does thyroid says minimum for FT4 should be 1.1 and FT3 should be 3.2. Minimum!

Trying to find another doctor.
I don't understand the doctors saying you are over medicated. A quick google search shows that HIGH FT4 with LOW TSH is indicative of hyperthyroidism. And even then, they should consider your symptoms. I have both Graves antibodies and Hashimoto's antibodies. Hashimoto's is much harder to diagnose because the antibodies generally only show up during a thyroid flare up. So I'm not surprised it took this long for you to be diagnosed.

The vast majority of the population with hypothyroidism is caused by Hashimoto's. Think about it, how many of us were deprived of iodine and/or grew up near a nuclear plant? My husband has hypothyroidism caused by radiation treatment for throat cancer, which makes sense. I'm convinced it's our SAD Western diet that has caused so many cases of thyroid disease. Whether it be from the junk food ingredients (too many to list), gluten, grains, and huge amounts of soy oil now in so many food or a combination of all of the above. It's just too coincidental that thyroid disease has gone up so much in the last 40 years.

And what I really don't understand is how so many endocrinologists can be so clueless on the proper treatment. Asking for natural thyroid hormone replacement is like asking for the nuclear bomb codes. I am so sick and tired of the condescending attitudes I get from doctors (I've been dealing with thyroid disease for 25 yrs). I have basically given up on getting natural hormone replacement and can't afford to pay any more out of pocket than my outrageously high monthly premium, so I am concentrating on diet to help heal myself.

I hope you find success on your journey. I know how frustrating the process can be.
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Old 02-06-2017, 08:31 AM   #56
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Thanks grneyedidy,

I don't have any antibodies. They have tested me every whichaway and it all proves I am not hyperthyroid. Then Endo was a huge disappointment, but I knew she would be, and getting my medical notes (filled with untruths) confirmed it to me. I am going to have to sit down and write a letter of "correction" to my file. What hogwash.

I'm sorry you can't get NDT as it's wonderful. I did horribly on Synthroid many years ago. I've been at this for over 30years and we have moved a lot in that time...now settled in our retirement home and I've been here 13 years. Still trying to find someone around here with a brain when it comes to the Endocrine system...we have no DO's, naturopaths are not allowed to Rx in this state, and the functional medicine and anti-aging doctors don't exist within 8-10 hours drive of me. But I"m not moving!

Good thing we have this forum and we are all knowledgeable about our own health and are fighting for it.
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Old 02-17-2017, 05:56 AM   #57
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Hi everyone. Just marking this thread so I can continue reading.
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