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Old 10-17-2016, 04:59 PM   #1
shelley
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New test results, new doctor

I just returned from a new doctor...NP actually who is the only one that Rx's NDT instead of synthroid. I've been on Armour and/or Cytomel (for RT3 issues) for about 30 years.

I feel well optimized. I do not have Hashis.

My TSH was 0.01 and my other tests had me in the middle to low end of the range, but "in range". (FT4 and FT3). (I took my meds 4.5 hours before the blood draw which affects the FT3 levels only).

I have been this way for decades and this is the first medical person who balked at me having such a low TSH and was quite confused since I was "in range" with the FT4 and FT3 which made no sense to her.

She now wants me off NDT 100% immediately, and is going to try to find an endocrinologist for me to see as she doesn't think I need thyroid meds at all. She thinks it's something else.

Note: I have lost about 17% bone density in the last 5 years and she thinks my 1.25 grains per day of NDT is responsible. I think that is a very low dose, and my last 20 years of dexa scans did not show bone loss and I was on the same 1-1.25 grains of NDT a day for over 30 years.

My question is this:

What is the cause of suppressing the TSH number? Is it T4 supplementation that suppresses the TSH or is it T3 supplementation? She said it's T4 that suppresses it and that it might be better for me to just be on Cytomel/T3 only. But I told her that going to an endocrinologist will result in synthroid/T4 only treatment! She said she knew and that's why she's very confused as none of this makes sense. She feels my bone loss is due to the NDT and wants me off it before I break a bone/hip.

Any thoughts? Without NDT, I'm below range in both FT4 and FT3. And I take a very low dose.

Thanks everyone. No endos where I live so she said she'll have to find me one out of state and they won't take medicare and it will be cash only. OH goody.
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Old 10-18-2016, 03:28 AM   #2
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I am not a physician, but I'm hypothyroid (Hashi's) and have a wonderful endo who helps me keep informed about thyroid issues (I read and then check with him).

First of all, I would never see a NP or take advice from one. Just my bias because thyroid treatment is very important, and labs don't tell the full picture. For example, the fact that she was 'confused' by your low TSH tells me that she isn't well informed. Taking T3 (Cytomel) will always lower the TSH a great deal. I take Cytomel, so my TSH is always very low for that reason. This is well known, so I'm quite surprised your NP seems unaware of that.

But I also question why you were prescribed Cytomel for 'reverse T3.' My endo actually studied with the scientist who 'discovered' reverse T3, and he tells me that all it represents is an error in the conversion of T4 to T3 in the body, and it is totally inert so that your level of reverse T3 is basically meaningless. It's the T3 itself that's critical.

The reason I take T3 is because my body doesn't convert well--something characteristic of Hashi's, and it occurred rather dramatically about 10 years after my initial diagnosis. My endo tells me that although it's common in Hashi's, it's impossible to know when or if it will occur. Conversion problems are not usual if the person doesn't have Hashi's. However, I don't know why you are sure you don't have it because it's notoriously difficult to diagnose with blood tests alone, which are often false negative. My own Hashi's was only diagnosed when I had a biopsy of one of my thyroid nodules; all my labs had previously been negative.

I don't know why you think seeing an endo will result in T4 only. A good thyroid doctor will prescribe what's needed in an appropriate dosage. That said, it's often difficult to find a good thyroid doctor, but if I were you, I'd try to find one. Thyroid problems are for life, and it's best to get good medical care ASAP.
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Old 10-18-2016, 10:11 AM   #3
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Leo,

Thanks for the response, but I've been doing thyroid for the last 30+ years since being diagnosed as hypothyroid. I'm not new to it.

Unfortunately, we have moved a lot and I have to start over to find new health care providers. And now we live in the mountains where the few available doctors are not taking new patients, and if they are, they won't take a medicare patient. There are only 3 doctors in the entire area (within 2 hours drive) who Rx NDT. Everyone else is old school Synthroid only...and 75 mcg. Flat dose and only testing TSH and no deviation in the Rx amount.

I waited 12 years to finally get into this NP and she's better than any doctor I've had. She's very knowledgeable, so, I think your criticism is unwarranted of her "just" being a NP. I'm glad you live where there is good medical care and you have someone you like and trust. But you also need to know that I'm not new to this. I'm very knowledgeable, and have been well optimized for decades and had good DEXA scans until now....this all came about due to my DEXA score of losing 17% bone mass since my last bone scan and her not wanting me to break a bone.

I have low antibodies and do not have Hashimotos. Never have. No nodules ever.

I have been very stable/optimized on 1-1.25 mcg of Armour/Erfa/Nature-Thyroid for over 30 years other than the times that I reverted into RT3 and went on Cytomel only to feel myself again. I was under doctors care....Dr. Jonathan Wright and his staff who are extremely knowledgeable. They called it RT3, but other doctors have called it Wilson's Syndrome where T3 only is used for treatment. Same Rx.

I've been through the protocol many times with many different specialists over the years. For MY body, it's real how I don't convert properly and I revert to really hypo behaviors and I can tell and hubby can tell. We are all different. No one size fits all.

The NP is "confused" because my TSH is so low and my bone density dropped 17% since my last DEXA, and yet my levels of FT4 and FT3 are in the center of normal range with my low dose of Nature-Throid. Normally, a low TSH, would have the FT4 and FT3 high in range. That's why she's confused. My research says low TSH (below .1 in a woman over 60) and normal FT3 and FT4 levels means that the person has "SCH" which is Subclinical Hyperthyroid! I have no hyper symptoms at all, my symptoms are hypo. The NP is concerned with me breaking bones and feels the thyroid meds have caused this too happen. Most evidence supports her thoughts.

She's trying to find an endo for me, but says they are few and far between even in the 2 neighboring states...and then you have a 3-6 month wait and they will definitely only Rx Synthroid as they are "old school". I've lived where I am for 12 years and know the medical world well. She's the best there is. I trust her. So, today I'm cold turkey off my 1.25 mcg./day and then will re-test in 2 months and hopefully be able to find an Endocrinologist who will do more testing that she's not comfortable doing.

My suspicion is that the DEXA scan was faulty. How can I have been on the same dose of NDT for over 30 years, having had many DEXA's (I'm nearly 70) that are normal and then all of a sudden have a 17% bone loss between scans. That just doesn't sound right to me. Also, she used a different lab from labs I've had done in the past. So, you aren't comparing apples to apples.

Since nobody else has any ideas, I may call the hospital and ask if anyone else having had a scan when I did which showed an increase in bone loss, and/or, if I can pay out of pocket to have it re-done to see the result and see if it's the same or way off of one done about 3 weeks ago.

As they say, something is just not right here in River City...but that's not where I live.

She wants parathyroid checked (been there before with a negative result), and an ultrasound done on my thyroid for starters and is trying to get me in to an Endocrinologist who does thyroid and not just diabetes (all medical searches in 2 states show that the Endo's don't do thyroid, but specialize in diabetes!). Sometimes I wish I lived in a large city or area with competent medical care. But I don't.

I was just trying to find out if anyone else had a low TSH and normal FT4 and FT4 levels and what their opinion was about bone loss that is dramatic as mine....and why would that happen.

I'll keep researching.
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Old 10-18-2016, 10:53 AM   #4
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Shelley-

I wasn't trying to be critical of your situation but simply to share from my own experience. You write: "Normally, a low TSH, would have the FT4 and FT3 high in range. That's why she's confused. My research says low TSH (below .1 in a woman over 60) and normal FT3 and FT4 levels means that the person has "SCH" which is Subclinical Hyperthyroid!"

And I tried to suggest that she should not be 'confused' because you are taking Cytomel--which suppresses the TSH. I am tested every 4 months, and at my last test, my TSH was 0.02, and it has always been low like that since I've been on Cytomel. My T4 and T3 levels are good. I'm NOT hyperthyroid; I just take Cytomel which is why the TSH is so low.

I fully understand your dilemma in getting adequate medical treatment; good thyroid doctors are hard to find everywhere.

I'm not sure how you know that all the nearby doctors only test TSH and only prescribe Cytomel, but one way to find a good doctor is to talk to a local pharmacist. They know who prescribes what, and if you say that you are already on Cytomel and looking for a doctor who prescribes it, they might be able to help.

Yes, there could have been an error in your DEXA scans, so you might want to see about scheduling another test, but at my age (75) five years is a long time between scans, so that would not have been an exceptional level of bone loss. I once lost 7% within a year, although my density is still not a problem. As I'm sure you know, hypothyroidism makes us more susceptible to bone loss.

Good luck with your search for good medical treatment.
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Old 10-18-2016, 04:54 PM   #5
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Thanks again for your response Leo. I am now off all thyroid meds for 4 weeks as I am scheduled for a radioactive thyroid scan/imaging at the local hospital to see if there are any nodules or problems. They can't test until I've been off any meds that contain T3. One of the things they are looking at is the "lump" at the side of my larynx that happened in an auto accident 2 years ago with a whiplash/concussion and a pop in my neck in that particular spot. the funny part is that they needed to call me back as they don't get any thyroid patients for this test that are on anything other than the traditional Rx'd Synthroid...with no T3 at all. Sort of puts this area into perspective with care/treatment.

It's easy to know what tests doctor in my little town run. Just call and ask. Not many doctors around here. I live in a small town of less than 2,000 people and maybe a dozen doctors with various specialities. But few GP's. We have a lot of NP's, but nobody (doctors or NP's) are taking new patients, nor have they for over 10 years. It's "small town Peyton Place".

So...now the wait begins and being off thyroid meds that I have taken for 30 years. Should be an interesting month! I'll let you know what they find.
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Old 10-18-2016, 07:33 PM   #6
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When on NDT, your tsh should be suppressed! That means it's doing its job! I would find a new doctor!
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Old 10-19-2016, 12:47 PM   #7
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My understanding is that suppressed TSH, which we all know is the hormone that stimulates production of thyroid, is a good indication that you are optimized! Hope you can find a good doctor that you can feel some confidence in! It's a terrible feeling to be treated for something when you don't feel sure the RIGHT treatment is being pursued!
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Old 10-19-2016, 01:47 PM   #8
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Jessica-
I think the issue for the OP is that her TSH was SO low that it concerned her NP. Yes, taking thyroid hormones will suppress the TSH, but when it goes too low, it can indicate we're over-medicated. It's a complex issue, which is why a good thyroid doctor is so important.
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Old 10-19-2016, 05:42 PM   #9
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My tsh is also very suppressed....due to medication.
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Old 10-20-2016, 07:29 AM   #10
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Jessica-
I think the issue for the OP is that her TSH was SO low that it concerned her NP. Yes, taking thyroid hormones will suppress the TSH, but when it goes too low, it can indicate we're over-medicated. It's a complex issue, which is why a good thyroid doctor is so important.
Yes, this is the issue. According to more research, when your TSH is as low as mine (the lowest level recorded at 0.006) and your FT4 and FT3 readings are in the low to mid range, it is problematic.

I took a webinar of the thyroid specialists world-wide and they said the TSH reading needs to be at least at a 0.5 for the best results, any lower is problematic.

I'm "dragging" without my Nature-throid and have gained 2# in 2 days without changing any of my habits.

Not nice.
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Old 10-20-2016, 07:49 AM   #11
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I'm not sure if I'd trust 'specialists' on the web---e.g., I know one guy who claims to be an 'expert' on Hashi's and makes a lot of dubious claims.

As I mentioned, on my last labs, my TSH was 0.02, but my endo wasn't concerned because of the amount of Cytomel I take (30mcg) that suppresses the TSH dramatically. I have NO hyper symptoms at all, and since I've been with my endo for years, he trusts me to report anything out of the ordinary.

It's similar with hormone levels. Online they'll tell you that your T3 'must' be at the higher end of the lab range, but mine is just fine at less than half. That's because I eat very, very low carb, and without the excess sugar/starch to deal with, the body needs less T3 to function well.

Once you begin thyroid treatment, each person is very individual in terms of the 'numbers' that are right for that person, so it's really best to find a good thyroid doctor and stay with that person to establish a trusting, long-term relationship.
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Old 10-20-2016, 10:05 AM   #12
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I also take Naturethroid and 30mcg of Cytomel...My tsh is below 0.005.
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Old 10-20-2016, 05:00 PM   #13
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My last labs say <.01 and my doctor isn't worried at all.
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Old 10-24-2016, 09:27 AM   #14
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I agree with you all, but will not get more NDT without having the scans and tests. I'm collecting information and taking online courses about thyroid. I just listened to an hour of 2 specialists on low TSH and hyperthyroidism......they have heart palpitations, racing heart, high pulse, weightloss and can't seem to get enough food. I have none of these symptoms. I've been off NDT for a week and you'd think if the NDT was suppressing TSH to a bad point, that now I would be feeling better. Ha! Not a chance. I'm slowing down rapidly and feel like a slug. I've been referred to an Endocrinologist (the only one within 2 hours of me) and that's Dec. 9th who specializes in bone loss with thyroid, so I"m hopeful to get more answers. It's going to be a slow 6 weeks though.
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Old 11-16-2016, 07:46 PM   #15
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Update: Had all 3 of the scans after going to "nuclear medicine" at the local hospital yesterday and today. All test results were given to NP today. All were within normal limits. One was with iodine and the score should be under 18 and mine was a 10. The radiologist came in to talk to me and said all was fine. I even got to see my results on the computer screen of my thyroid. Tomorrow I go in for re-testing of my TSH, FT4 and FT3. I'm guessing they will realize that I am hypothyroid and the former tests were just as everyone has said above.....correct with a suppressed TSH from Nature-throid and not because I'm hypERthyroid which is what they insisted must be the situation. 4 weeks cold turkey off all meds and even off my multi-vitamin since it has iodine in it, should have my test results showing my hypO state. I'm still scheduled to see the only Endocrinologist on Dec. 9th. Should be interesting to see what happens next. The Endo only Rx's Synthroid. Very few doctors Rx NDT where I live.

I'm most grateful for all of you who posted your suppressed TSH readings and mentioned that your Endo's know that this is due to the T3 you are taking. I'm printing this off to take with me tomorrow for my blood draw. I have removed the website and all info about each person so there won't even be any "names" that may or may not be correct. Thanks everyone. I'll let you know my test results when I get them. 4 weeks off Rx is going to have them drastically changed I"m sure! :-)
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Old 11-22-2016, 04:14 PM   #16
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Shelley- what did you find out about your labs since this last post? Have you started back on NDT?
I read everything above and echo the same.. I spent 5 years gaining weight, not pooping, achy, tired, having wicked hair loss, joint pain, insomnia and scary labs, plus metabolic resistance and went to more doctors than I can even remember. I finally found one that gets it and my TSH has been 0.00 for a year. My Free T3 and Free T4 are all the way at the top of the ranges just like he wants them. I lost all of the weight, my hair stopped falling out, insomnia went away, my gums stopped bleeding for crying out loud... my labs went from all reds and yellows (and lord where do I even begin to fix all of this?!) to pages of green, once my thyroid was optimal. We started low and increased every 2 weeks until I felt better and my pulse and BP were still within normal ranges. I take 5 grains a day. Yes- 5.
Synthroid is synthetic lab made T4 that your liver has to convert to T3 to be used by the cells ... and every single cell in your system depends on the thyroid to control the metabolism. Your thyroid needs so much more than synthroid. I firmly believe hypothyroidism is an absolute epidemic in this country. 95% of my health problems disappeared with my zero TSH. Ive had 10 doctors argue with me since that I am doing my body harm. Pft... prove it.

If my doctor died tomorrow (and he might, he is ancient) I would seek the world over for another holistic practioner no matter the cost.. everything can be done by skype and e scripting these days.. you don't have to actually live within driving distance of a good holistic practioner. I wouldn't waste my time on an endo- the one and only one I saw was the biggest joke and I had to wait 3 months to see him!

Good luck.. please keep us updated...
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Old 11-22-2016, 04:56 PM   #17
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Hi Tracy,

They postponed my follow up blood test to a week from tomorrow...Wed. 11/30. I see the endo that is 90 minutes away on Dec. 9th. I am not hopeful. I've been told that I am not to take any of my NatureThroid and am really dragging. The NP won't let me take the Nature-Throid. She said the T3 creates amazing bone loss. I'm thinking about the fact that this has calcitonin in it! So, what is she talking about?

I have not heard of any doctors that will treat you unless you physically go in for the appointments. Testing can be done, but not having Rx with a doctor. If you know of one, please enlighten me. I have been battling this since I moved here 12 years ago. My 2 good doctors retired early due to the insurance issues of Obamacare. I know I felt best when my FT3 was at the high end, or above the high end even (but I always tested 3-4 hours after taking the morning meds so it was comparing apples to apples with the T3 at it's peak in my system.

I have gained 9# in 5 weeks off of my NDT. I"m actually eating less too which is sad. I don't feel hungry like I did before which is really bizarre. But I"m eating clean/healthy.

I will let you know what happens. I should be able to get the test results next Friday.

Thanks so much for your story. I totally agree. I just wish I could find a medical person that agreed. I looked for a functional medical practitioner in my state and the state next door (2 hours away) and there were none. I am at a loss of where to go next if this Endo is not what I need...and I"m not terribly hopeful, but am jumping through the hoops required by the NP.
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Old 11-22-2016, 06:43 PM   #18
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Shelley, I'm sorry you are dealing with this all. It brings back very unhappy memories for me. I remember doing research online about the thyroid and the fact that everyone in my family has thyroid issues and telling my doctor "my thoughts" and he sighed, leaned across the exam table, laughed in my face and said "get off the internet.. its people like you putting doctor's like me out of business!" And he walked out. I felt like id been slapped in the face and I know I turned bright red, I could feel it! Every doctor I saw that accused me of lying about my food intake and blaming it on my thyroid was a thin man! Disgusting. Here I was, 200 lbs and no matter how little I ate and how hard I worked out, I couldn't lose a single pound.. sometimes Id gain. I literally was suicidal. I don't think doctors mean to keep us fat and sick and miserable.. they are just mainstream western doctors preaching what they have been taught which is why we are all so sick and fat....

I will be patiently awaiting the lab results you post.
I have been treated by doctors for other issues via phone and they were able to send me a labsheet... do you want me to pm you my doctor info? He is out of pocket for me for everything but labs.. he bills my insurance (Tricare) for that but otherwise I pay for everything else. He could probably do a phone consult with you and you could go from there. Do you have a LabCorp there?
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Old 11-22-2016, 06:51 PM   #19
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I will be very interested in seeing your labs when they are back...
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Old 11-22-2016, 07:19 PM   #20
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I will be very interested in seeing your labs when they are back...
Sorry bout the double post ..
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Old 11-23-2016, 01:38 AM   #21
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Some misconceptions here:

The comment that "Synthroid is synthetic lab made T4 that your liver has to convert to T3 to be used by the cells" is both correct and misleading. A healthy thyroid gland produces ONLY T4, which is converted in the body (principally but not exclusively) in the liver to the necessary T3. Synthroid simply mimics what our 'normal' thyroid would do.

For example, I have a friend whose thyroid was removed due to Grave's disease, and he has been stable on Synthroid alone for the past 20 years. However, I have Hashimoto's, and it's common to have 'conversion problems.' I was stable with just T4 for over 10 years, and when I began having conversion issues, my endo added Cytomel (T3) which keeps me stable. The problem is that many, many doctors do not 'believe' in giving T3, and if a person isn't converting well from T4 to T3, that's a disaster.

Shelley- I've criticized your NP before, and I know you like her, but the comment that T3 causes "amazing bone loss" is simply not true. That might be if a person was taking excessive T3, but the idea is simply to add what the body is no longer producing--i.e., to get the T3 to a normal level for the person.

Studies show that hypothyroids are prone to bone loss, but results don't show whether it's due to the slowed thyroid itself or the Rx we take to supplement. My endo does regular bone scans to check, and although I've been taking T3 for about 6 years now, I don't have significant bone loss.
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Old 11-23-2016, 04:43 AM   #22
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I disagree. Synthroid IS a synthetic T4 only med and a lot of us did very poorly on it.

Those that do great... That is awesome.
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Old 11-23-2016, 06:10 AM   #23
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Please re-read my post. I never said that Synthroid isn't T4. Of course it is.

My point is that many people ONLY need T4, if their bodies convert effectively.
I did fine with just T4 until I experienced conversion problems, and that's when I had to add T3. But there are many people who never have conversion problems and do fine with just T4.

Thyroid Rx are complex, and many people don't tolerate certain brands--which doesn't mean the brand is poor or inadequate. For example, I do fine with Synthroid and Levoxyl, but I don't tolerate Levothyroxine. For T3, I can only take the brand, Cytomel. The generics don't work for me. Yet I know people who do just fine on the generics.

My point is that we shouldn't 'bash' a brand because it doesn't happen to work for us.
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Old 11-23-2016, 06:34 AM   #24
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Originally Posted by Leo41 View Post
Some misconceptions here:

The comment that "Synthroid is synthetic lab made T4 that your liver has to convert to T3 to be used by the cells" is both correct and misleading. A healthy thyroid gland produces ONLY T4, which is converted in the body (principally but not exclusively) in the liver to the necessary T3. Synthroid simply mimics what our 'normal' thyroid would do.
A healthy thyroid gland produces T4, T3, T2, T1 and calcitonin. Not just T4. Synthroid, as you know, is only T4. So many people, like myself, never do feel better on Synthroid only and have doctors who dismiss us as hypochondriacs when we're really hypothyroid. I bash Synthroid in my personal case because it did absolutely nothing for me and 10 different doctors couldn't understand why. Im glad it works for you. Armour is what changed my life.
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Old 11-23-2016, 07:16 AM   #25
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No, a 'healthy' thyroid gland produces T4 only--and the body converts to the other hormones.

That's why my friend who has had his thyroid surgically removed (his body produces NO thyroid hormones) can thrive with just Synthroid. His body converts that T4 to the other hormones as needed.

I'm sorry that Synthyroid didn't work for you, but that's not a reason to 'bash' it publicly. As I mentioned, a lot of brands don't work for people. I wish I could take generic Cytomel, for example, because it would save me a boatload of money. I don't 'bash' the generics because they don't work for me; other people may be more fortunate.
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Old 11-23-2016, 07:21 AM   #26
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I don't think I can post links nor directly mention another website so I wont but millions consider this site the thyroid bible...

Please consider that a healthy thyroid makes five hormones: T4, T3, T2, T1 and calcitonin. T4, also called thyroxine, is simply a storage hormone meant to convert to T3, the active hormone. But a healthy thyroid doesn’t make you totally dependent on conversion alone, giving you direct T3 plus the other hormones above. So in other words, being on a T4-only med means you are missing out on direct T3 as well as the compliment of all five hormones.

No worries... free speech is still a right and my right is to hate synthroid. This thread is for Shelley and her experiences. Debating who is and isn't doing well on it isn't meant for debate here. Peace.
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Old 11-23-2016, 05:42 PM   #27
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Wow...I'm gone one day and look what happens! I will be diplomatic and say "good debate".

I tried Synthroid and nearly burned my house down. I hated the stuff and the doctor said that I should just not cook, and should continue to take it. Bye bye Endo.

I cannot convert and need the T3 supplementation. I have been diagnosed with "Wilson's Syndrome" over and over...similar to the RT3 regimen... which means T3 only for me and I do really well on it.

Tracy, thanks for your "freedom of speech" and for talking directly to me as your situation seems very similar to mine. I've got many friends who do really well on Synthroid. But obviously the 2 of us do not.

I will be a good patient and wait until I see the Endo on Dec. 9th, but am rather happy that my blood test results will be available next Thursday or Friday and I would love to see the expression on the NP's face when she sees I am far from hyperthyroid. All the nuclear tests she had me take last week showed I'm very "low" with an underactive thyroid. Her blood tests will confirm it.

Leo...I went to this NP 2.5 years ago when I was in an auto accident and she was the only medical person taking new patients within an hours drive of me. She diagnosed 100% of my many problems perfectly. It took me over 2 years to get to specialists to address them all as in my State, you can't have a lawsuit with a medical record provided by a NP, so I was forced to find an MD, and then she was so good, her practice was full when I tried to get back to her. All the doctors missed all she found that very first time I saw her. I have waited a long time to be her patient....had to wait until someone moved or died to get in with her. We have really lousy medical. She's really good. Just cautious after my DEXA showed 17% bone loss. I personally think it's the valium I have to take to leave the house and the lack of working out at the gym which I did pre-accident 5 days a week...heavy weights, Pilates, Yoga, Elliptical.....I was very healthy.

Anyway, I'm dragging big time and we decided today that it's too much for me to get and decorate a tree and the house. This makes me very sad. I sat in a chair all day today and read a book.

Sorry this is a novel. Just a couple more weeks and I should have answers. I'm doing lots of bone OTC meds and special exercises specifically to build bone. I am not going to take this quietly.

Thanks for all the discussion ladies!
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Old 11-25-2016, 09:29 AM   #28
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Shelley- no doubt thyroid woes are so misunderstood. Its complicated and I learn something new almost every time I do research. I am still a long way from understanding it all but what I do know is that NDT replacement is almost identical to what our own thyroids should be putting out, before they tanked on us! T4 is not the only thing we are missing out on.

So many think thyroid is just weight gain but if you are truly hypothyroid, untreated or undertreated, do labs.. all the labs your insurance will allow, then do them 6 months after your thyroid levels are optimal and see the difference. It will blow your mind. My holistic practioner is an anti aging expert and has been in medicine 50 years and told me he's never seen labs as pristine as mine- after we experimented with raising my armour dose all the way to 5 grains... I just cant be more elated. I still have terrible autoimmune issues I suspect is from fatigued adrenals and so the crap still continues for me... sigh. But I'm getting there. Its all related!

You may need to get angry and pound your fists when you do finally see your doc next. In the meantime, research until you are weary and go in armed.. I am sorry your are so fatigued, I get it. One huge mistake I made over and over again was not getting a copy of my labs... relying on a nurse to call me and tell me "your labs are good, your thyroid is within range. We have no idea why you feel so bad" ....GRR!

Hey another thing you can do- go get a regular old fashioned thermometer, keep it by your bedside along with a journal. Don't eat or drink anything and before you get out of bed- before you even move much, take your temp orally and write it down for a week. I assure you you will come in 2- 2.5 degrees below the normal temp and you can take that to your doc for evidence that you are hypothyroid.

I look forward to hearing how your labs and appts go.. big hugs to you! I hope you get your Christmas decorations done
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Old 11-29-2016, 04:22 PM   #29
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Hi Tracy...I've been on Armour and/or Cytomel for over 30 years. I started really learning the fine print on all of this about 15 years ago when I was having major adrenal issues. I have always had a low body temp and low BP and pulse. I have graphed for decades. I gave up on doctors knowing how to treat me about 10 years ago when my last good doc here retired (2 hours away and in another state). So, I do my own testing online and do it when I start feeling poorly.

When they reformulated armor, I would test every 6-8 weeks...lab was 90 minutes away, but I kept it up.

I can't wait for my results since I will have been off meds for 6 weeks with this blood test. My oh so low "hyper" blood TSH test will be high and no longer low. My "hyper" FT4 and FT3 (low to mid range) will be below range.

I went off meds for 3 days a few years ago to test to see how I'd be "without anything", and it's dreadful, so this should be really obvious to everyone with part of a brain. I don't know if the NP is going to give me the results, call to apologize, have her nurse call me, or just "let me go". I guess we'll find out. They said they will have the test results Thursday or Friday at the latest. I expect rather dreadful results! But I still have to wait until Dec. 9th for the Endo appointment. If I can do this for 6 weeks, I can stand another 1.5 weeks. I'm just slow and gaining weight (up about 8#).
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Old 12-01-2016, 07:59 AM   #30
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I am very curious as to what your doctor/ nurse says about your labs. I remember time and time again being called and told "your labs are within range" when they weren't. Get a copy..you have to do your own legwork here... I was so angry at the endo I saw (the only endo I saw) that I sent him a scathing letter with before and after pictures of me with terrible labs and then with great labs and a 30 lb weight loss. He scolded me in his office and diagnosed me with exogenous thyroidtoxicosis because my TSH was like 1.6... its 0.00 now and has been for a year and I feel great and am at goal!


I hope you get some relief soon.. I know all to well about the weight gain.. hair loss, aching joints and all..
And Im fixing my adrenals now with licorice, ashwaganda, low dose naltrexone, fish oil and L Tyrosine vs the steroids and methotrexate the rheumatologist gave me. I am making progress!

Big hugs!
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