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PLEASE READ BEFORE POSTING

This comments section was NOT meant to be an interactive advice forum so please do not post your lab results here expecting an answer. I feel it is unwise to give advice without knowing more about a person, so will only answer questions that may be of general interest. I'm sure some of you got in trouble by following internet advice--I did! I am also only one person--there is no team of moderators here!

Standard rules for posting apply and you should all know what they are: no profanity, no flaming, no name-calling, etc. Obvious marketing pitches and anything I deem offensive, rude, erroneous, or inappropriate will be deleted.

If you’d like to talk to me, email me directly about an affordable hormone counseling session at barb @ tiredthyroid . com. Thank you.

233) Lee  Male
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Tuesday, October 17, 2017 01:11 PM Write a comment

Thought I was supposed to reply to your email so sent a message to you there as well.
232) Lee  Male
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Sunday, October 15, 2017 01:32 PM Write a comment

All I'm trying to do now is to get back to baseline before I added the T4 and address why I crashed on it, but somehow, between starting and then stopping it, my adrenals got messed up, and after a few days of initially feeling relief from the symptoms since stopping, I feel I'm over-secreting cortisol which is causing an increase in blood pressure and anxiety. At a loss of what to do now.

Pat Sunday, October 15, 2017 10:49 PM
Lee, if you are interested, would you like to email me @ stsfootball@aol.com - we can share our experience and discuss what has/has not worked.

I will delete this comment containing my email after you reply.
231) Mark Searle  Male
Location:
Hungary
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Sunday, October 15, 2017 04:45 AM Write a comment

Hi,
My wife had RAI 6 months ago after several attempts to battle Graves with drugs. Although FT3 and 4 are now in normal range on a moderate dose of thyroxine, her TSH is 22 (range 0.4 - 4.00)
What we we don't understand is that the docter only focuses on ft3 and 4 and says all is fine.
I cannot find anything definitive online or research that suggest what the target TSH should be after RAI, or even if it is any longer important as there is no longer much (any?) thyroid left to interact with.
Can anyone point me in the direction of some good info on this subject. Manmy thanks

barb Sunday, October 15, 2017 01:29 PM
A high TSH indicates hypothyroidism or undermedication, while a low TSH can mean several different things. I wrote a book about Graves' patients' (and all thyroid patients') problems with dosing by TSH. Link should be at the top of this page.
230) Lee  Male
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Sunday, October 15, 2017 02:39 AM Write a comment

Here are my 2017 thyroid labs, consolidated on an easy-to-read spreadsheet (paste into browser):
app.box.com/s/ds149uextievguib0evt6uk32afrfl59
Vit A, D, B12, folate, selenium all fall w/i upper limit of normal.

Reviewed the Chapter regarding the Profiles. As such, I still am unable to determine which Profile I might fall in based on my labs. Thoughts?

barb Sunday, October 15, 2017 01:24 PM
Lee, this should be the very first thing you see when you come to the comments page: "This comments section was NOT meant to be an interactive advice forum so please do not post your lab results here expecting an answer. I feel it is unwise to give advice without knowing more about a person, so will only answer questions that may be of general interest. I'm sure some of you got in trouble by following internet advice--I did! I am also only one person--there is no team of moderators here!

If you’d like to talk to me, email me directly about an affordable hormone counseling session at barb @ tiredthyroid . com. Thank you."

Please note that this is a completely public forum, so I would recommend against putting any personal information up here.
229) Lee  Male
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Saturday, October 14, 2017 08:37 PM Write a comment

I was really holding out hope for the 25mcg T4 (Tirosint) trial; I bombed out after two weeks of having added it to 1 grain NDT. Unexpectedly, my symptoms got progressively worse (fatigue/general malaise/achiness, constipation, moody, tightness around throat when speaking, weight gain/water retention) as did labs (rT3, FT4 and TSH increased while FT3 decreased). Quite the opposite of what my doc and I had expected. I couldn't take the symptoms any longer and seeing my labs worsen, so I stopped the Tirosint.


All the other internet groups would argue that it was a mistake to add T4, as all it does is raise rT3 if it doesn't convert to T3. This is in direct contradiction to everything your state in your book (i.e., too much T3 converts to rT3 and that adding T4 to NDT is beneficial).

At a complete loss as to what to do to resolve this.

Any suggestions?

barb Saturday, October 14, 2017 10:21 PM
In Chapter 23 of my book, page 270, I list 3 different profiles for thyroid patients taking medication. My book talks about people like me, Profile I, with low FT4 and high FT3 on 100% NDT. WE feel better adding some T4. If you have high FT4 and low FT3 on NDT, then adding T4 would not be wise. You might feel better by just raising the NDT. 1 grain is not a full replacement dose. You must all address any cofactor deficiencies: iron/ferritin, cortisol, Vit D, Vit B12, folate, etc.
228) Kristina  Female
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Saturday, September 30, 2017 11:27 AM Write a comment

Hi Barbara,

I have several books on Hashi's and hypothyroidism and yours is the most comprehensive out of all of them! I am so glad I stumbled up on it. Thank you! My Dr. has given me compounded T3 so as not to have to worry about taking multiple doses of T3 throughout the day. Have you tried it or have any thoughts about it? When might you suggest doing labs if I take it with my levo at 6AM? I believe the Dr. said it has 10-12 hour release across the day.

barb Saturday, September 30, 2017 09:05 PM
Thanks, glad you liked the book! I have not tried compounded T3. If it releases over 10-12 hours, try testing at its midpoint, or 5-6 hours after taking it.
227) Lee  Male
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Sunday, September 17, 2017 06:16 PM Write a comment

5 weeks into having added my daily dose of 25mcg Tirosint to 1grain NDT and still going in and out of feeling off (fatigued, achey). Labs (2 hrs after taken thyroid meds) came back: TSH: 2.02, FT3: 3.50, FT4: 1.50, rT3: 25. Should I increase the Tirosint or add more des. thyroid - or wait/re-test later? Of concern is that my rT3 increased to 25 which is above range. Could this signal a conversion issue? Or could adding T4 have exacerbated an underlying adrenal issue?
226) Leslie Blumenberg  Female
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Sunday, September 3, 2017 02:00 PM Write a comment

Hello Barbara!

I can't thank you enough for the article about Reverse T3! I feel like I'm always fighting the waves of ignorance on the subject and now I can point patients towards your excellent article. I keep saying, 'but RT3 is not evil like you've been told... it's a necessary part of the homeostasis of the body.'

You explain it so nicely that a sigh of relief came over me! I will be looking around your blog for more well researched information to pass on to patients. I've been a thyroid patient advocate for almost 2 decades, so my research interest is deep, like yours. However, some of these support groups are ruining peoples' lives with misinformation.

Thanks again!
Leslie Blumenberg

barb Sunday, September 3, 2017 03:47 PM
Thank you so much Leslie! Patients should be warned that misinformation can come from patient support groups AND doctors. We can only counter this misinformation if people learn the facts.
225) Sheila  Female
Location:
Monreal
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Thursday, August 31, 2017 09:09 AM Write a comment

I was diagnosed with Graves 12 years ago and am being treated with Synthroid, yet I keep alternating between hyper and hypo thyroid states. I have both antiTPO and antithyroglobin antibodies. Does that mean I have both Graves and Hashi antibodies?

barb Thursday, August 31, 2017 11:40 AM
Many Graves' patients have both sets of antibodies; I do. What you should check are your TSI antibodies. If those are high, then your TSH can be lower than it should be, regardless of your Synthroid dose. You can NOT dose by TSH. You cannot fluctuate between hyper and hypo if you have no gland. It's just your TSH fluctuating due to fluctuating antibodies.
224) Lee  Male
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Thursday, August 31, 2017 02:27 AM Write a comment

Is there an adjustment period when starting levothyroxine, Synthroid or Tirosint (in my case, 25mcg Tirosint was added to my dose of 1 grain dessicated thyroid)? I am going on my 3rd week and am getting a flare up of joint pain and muscle aches in prone areas (neck/back). 25mcg is a modest addition, but it's been a few years since I made any changes to my thyroid meds. As a side note, I do not have a problem converting T4 to T3 when I was on T4 in 2012. Thoughts?

barb Thursday, August 31, 2017 11:46 AM
Yes, it will take your body a few weeks to find equilibrium again: the conversion enzymes will adjust to accommodate more T4 in your system. You should test FT3 and FT4 to see how this new dose affects your levels. Joint pain can appear when a dose is too low OR too high.
223) Sheila  Female
Location:
Montreal, QC
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Monday, August 28, 2017 01:19 PM Write a comment

Hi,
I was diagnosed with Graves 12 years ago. I tried pills for a year, and when that didn't work, I had RAI treatment. Shortly afterwards, I became hypo, and started Synthroid. Since then I continue to alternate between hyper and hypo: I have to change my dosage once or twice a year, every year. I feel like I'm on a roller coaster! Can you tell me what might be causing this?

Barb Monday, August 28, 2017 04:06 PM
Your TSH probably changes because you still have Graves'. Please read my book for more information on why Graves' patients cannot use TSH as a guideline.

Sheila Thursday, August 31, 2017 09:16 AM
Hi Barb! Thanks for the tip. I've read your book (a bit technical for my level of scientific literacy), and will read that section again. (I also have Stop the Madness as well as books by Broda Barnes and Mark Starr.)
I saw an endo yesterday, and was not surprised by his response as it was similar to most thyroid patients. I see a ND today and am hoping for a fresh outlook!
I posted another question about my antibodies...I'm confused.
222) Jenny  Female
Location:
Scottsdale, AZ
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Friday, August 18, 2017 12:07 PM Write a comment

I want to thank you for writing such a comprehensive book! It quite literally saved me from giving up. Combining NDT and Tirosint is turning out to be the answer for me and I doubt I would have pushed for it if I hadn't read about your experience. I have a question that your book didn't address....taking vitamins when multi-dosing the NDT. It's hard to get the 4 hours before and after. Any suggestions would be helpful, but I also understand that this isn't Q&A. Either way...a huge heartfelt thanks for your book!

barb Friday, August 18, 2017 08:32 PM
Glad you enjoyed the book and I hope you'll write an amazon review. I don't know if any specific vitamins affect oral thyroid hormones. I've read that biotin can cause you to have inaccurate results, and I know that iron and calcium shouldn't be taken with them. You may have to do some googling to find the answers to your specific questions!

Jenny Monday, August 21, 2017 08:07 PM
I take a multi-vitamin with calcium and iron, and I've read several articles that suggest to take them 4 hours from taking levothyroxine. I remedied by taking the levo at 3am, and the NDT at 6am, vitamin at 10am and NDT at 3pm leaving a bedtime dose at 10pm. (Great suggestion by the way!). I wrote a review for your book on Amazon earlier this month and I recommend it to anyone with a thyroid issue. Thanks again!

barb Monday, August 21, 2017 09:12 PM
Glad you figured it out, and thanks for the review!
221) jen  Female
Location:
oxford
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Monday, August 7, 2017 11:27 AM Write a comment

hi Barb
I have had an under active thyroid for 25 years and for 20 i was on synthetic T4 but always felt unwell and lots of weight gain. 5 years ago i started on armour and did really well but then it started to be less effective even though i upped dose, went onto nature throid and am now having the same problem. my tsh is 0.01 mu/l 0. ft3 is 2.9 pmol/l, ft4 8.9 pmol/l. I have tried adding a little t3 but just piled on more weight. I do not know what to do next!! please if you could offer any suggestions i would be grateful
220) Ginny F  Female
Location:
Austin
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Tuesday, July 18, 2017 10:24 PM Write a comment

Hi Barb. Reading and loving your book. It's the most straightforward and realistic thyroid book I have read. Switched from years of Synthroid to Armour this past winter. Initially had palpitations, which have resolved with a lower dose. Problem is is that my doc keeps lowering my dose based on TSH. and now I have greatly increased hair loss. My question is: did your hair stop thinning or grow at all after you started a NDT/T4 combo?
Than you so much for putting so many years into this book.
219) Philip H  Male
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Tuesday, July 18, 2017 04:26 PM Write a comment

Hi Barb. Just checking in again. I have been on .75 Synthroid for close to three years now and have been experiencing increasing anxiety symptoms for the last year or so. I just had a blood test. My Free T3 is 2.5, so in the low range, and my REverse T3 is 19 ng/dL. But what suprised me is that my Ferritin is 276.6, or above range of 5-244. Usually low ferritin accompanies hypothyroidism. I'm wondering if the high ferritin could be related at all to the anxiety symptoms? Should I work with my doctor to raise my Free T3 and will this help the anxiety symptoms. My TSH has crept up to 2 from below 1, so I wonder if I will need more synthroid.

I have also started supplementing with zinc carnosine and selenium per my doctor's recommendation. I do seem to feel some relief of my symptoms since I've started that and a GOS prebiotic.

Thanks and love your book,
Phil H
218) Kimberly Murphy  Female
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Monday, May 29, 2017 06:32 PM Write a comment

Hi Barbara. Ordered your book and read it right away. Thank you. Could you tell me where you got the information that a healthy, human thyroid secretes 100 mcg T4 and 10 mcg T3 a day? I can't seem to find that information myself. Thank you.

barb Tuesday, May 30, 2017 04:49 PM
This was discussed in a previous comment; please see post #167.

Kimberly Murphy Wednesday, May 31, 2017 09:02 AM
I read that post, but what I am really interested in is the citation for the information that a healthy, human thyroid secretes 100 mcg T4 and 10 mcg T3. That is a 10:1 ratio. Any information I can find on my own says 80% to 20% which is a 4:1 ratio. I find this is a big difference. I am trying to find the truth. Thank you.

barb Wednesday, May 31, 2017 11:45 AM
The book, page #, and sentence were cited in post #167. It is also discussed in my book in Chapter 20, "Prescription Thyroid choices & Dosing Protocols," page 235. SECRETION from the thyroid gland is about 10:1 of T4:T3. However, some of this T4 is then converted, leading to a 4:1 ratio in serum. If you take the 4:1 ratio found in NDT, and then have any conversion of your own, you will end up with high T3 and low T4 levels.

Kimberly Murphy Wednesday, May 31, 2017 12:37 PM
Thank you. Totally understand now!! Sorry...not at my sharpest. I had a total thyroidectomy 11 years ago and am trying to get to my optimal dose. Since I don't have a thyroid at all, I would think a good place to start would be 100 mcg T4 and 10 of T3. No one, in 6 years, has ever given me that much replacement. I am excited to give it a try soon. Thank you for bearing with me.

Kimberly Murphy Wednesday, May 31, 2017 12:38 PM
ugh...Had my TT in 2011. Not 11 years ago. Oh brother!!

barb Wednesday, May 31, 2017 12:43 PM
As I also stated in post #167, 100 mcg T4 and 10 mcg is an AVERAGE. It could be too much for you or too little. You should always increase any dose SLOWLY, or you could easily overshoot your optimal dose.

Kimberly Murphy Thursday, June 1, 2017 07:37 AM
Would you really start increasing slowly for someone without a thyroid? Right now I am on 1 grain NDT (WP Thyroid) and 17.5 mcg liothyronine. I have been on this since 5/18. I was up to 1 grain WP and 30 mcg liothyronine, but was doing that on my own and my dr did not approve. My T3 was over range and my T4 was under range. I was advised by a FB group that I was pooling and to cut my T3 in half. I now have a functional nurse practitioner I am working with. This has been so terribly hard. My main symptoms are depression and anxiety which have contributed, I believe, to a major decrease in appetite and a 37 pound weight loss. I also have had trouble sleeping. I just can't help but wonder if my body is just desperate for more thyroid hormone. I have no gland at all and am only getting 38 mcg T4 and 26.5 mcg T3. Just no way near 100 and 10. My fnp wants to wait until 6/8 bloodwork and 6/21 appt to change anything. Some days that seems like an eternity. Thank you.

barb Thursday, June 1, 2017 11:10 AM
The reason you increase slowly is to give your body time to adapt, and so that you don't crash. You say you have my book. Please read it so you can understand why your low T4 and high T3 dose may cause you to feel so ill.

Kimberly Murphy Wednesday, June 7, 2017 07:34 AM
Another question...if 1 grain of WP Thyroid has 38 mcg T4 and 9 mcg T3, why is it 65 mg? Certainly 47 mcg is not equal to 65 mg. What is all the other stuff in there?

barb Wednesday, June 7, 2017 02:15 PM
If you read the ingredient label of any NDT, there are fillers, binders, and other ingredients besides T4 and T3. Check their website for more details.

Kimberly Murphy Monday, July 3, 2017 11:48 AM
Hello again Barbara. I have kept reading your book over and over as to try to retain more. Do you have a way to take your thyroid meds the day of bloodwork so it doesn't falsely elevate or falsely lower your results. The FB groups say to take your dose between 12-15 hours before a blood draw. I believe I read your recommend after 4 hours but not as far as 24 hours. What do you do? Thanks again!

barb Monday, July 3, 2017 12:31 PM
This depends on how many times per day you take any T3. We know T3 peaks 4-6 hours after a dose, and comes back to baseline after 24 hours. Ideally, you'd want to measure the lowest point between your doses. Since I take my NDT 4x/day, I measure at the 6 hour mark, which is my trough. If I were taking it 3x/day, I would measure at the 8 hour mark.

Kimberly Murphy Monday, July 3, 2017 05:29 PM
Right now I am taking 3/4 grain WP and 12.5 mcg liothyronine at about 6 am and then 3/4 grain WP around 3 pm. Thinking about maybe switching my 3/4 grain WP from 3 pm to 6 pm. And, maybe the night before bloodwork I could take it at 8 pm and then get blood drawn at 8 a.m. Is it ok to switch times like that just for one day or not really? Also, if you measure at a trough, how do you keep from over dosing?

Kimberly Murphy Monday, September 18, 2017 02:12 PM
Hi Barbara. So I am now on 50 mcg Tirosint and 2 grains WP. I have been on this since 8/31. When do you think would be the smallest window to do bloodwork? I am feeling so poorly today...mostly depression. I honestly have hardly any physical symptoms. It's all my brain. And I don't always feel so badly. In the 6 years since my TT I have never taken more than 56 mcg of T4. On July 25 of this year I was given 76 and then 8/31 increased to 126. I pray I am on the right track. This feels just dreadful.

barb Monday, September 18, 2017 08:33 PM
For me, 2 grains is an overdose, so 50 mcg T4 on top of that would certainly be too much. You might want to get labs after 4 weeks just to make sure you haven't overshot your optimal dose.

Kimberly Murphy Wednesday, September 20, 2017 01:27 PM
Thank you Barb! I have recently read about hypothyroidism and glycogen deficiency. Have you ever taken a look at that?

barb Wednesday, September 20, 2017 04:15 PM
Sorry no, not familiar with that.
217) Jose  Male
Location:
Puerto Rico
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Sunday, May 28, 2017 06:31 PM Write a comment

Greetings,

Thank you for your wonderful site. It has been invaluable for us hypothyroid (hashimotos {both antibodies} but had Graves when I was in college {went to remission}) patients. I’m currently struggling with high RT3 (ratio 11-13) and will ask my doctor to prescribe Synthetic T4 and reduce the NDT dose (and divide it in two doses to spread the T3 effect of the NDT). My question is what brand of NDT and T4 are you currently using? Do you have any preference or recommended brands of NDT and T4? Do you take NDT and T4 in one dose or multiple doses? Again, thank you very much

barb Tuesday, May 30, 2017 05:05 PM
I have taken generic T4 (levothyroxine), Synthroid, and Levoxyl, and all bring my T4 up, since I don't produce any, so I can't say any one is better than the other. NDT is also available in multiple brands at different prices. Cost is a factor for some, and depending on your insurance plan, Armour can be more expensive than Nature-throid or NP Thyroid. I wouldn't base your ideal brand on any one person's experience, but try different brands out yourself. I take my T4 before waking on an empty stomach, so once per day. The NDT I take 3 or 4 times per day (some doses divide better by 3, others by 4).
216) Jane Robinson  Female
Location:
Melbourne, Australia
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Wednesday, May 24, 2017 04:37 PM Write a comment

I had RAI treatment for Graves in 1995 and went on replacement thyroid hormone treatment. Last year I approached my doctor and asked to be put on natural desiccated thyroid. I now take 1 grain per day. My doctor also prescribed iodine, selenium and ATP co-factor. My doctor has since retired. I have been trying to find out why a person who has had RAI and has no, or hardly any, thyroid left needs iodine supplements. Would you be able to shed some light on this for me. With many thanks Jane.

barb Tuesday, May 30, 2017 05:14 PM
I wrote an extensive chapter on iodine in my book if you're really interested in the topic. If you had RAI and have no working thyroid gland, then you can take all the iodine you want, but you're not going to produce any. So not sure why your doctor prescribed it. 1 grain is most likely too low a dose for you if you have no thyroid gland. You should run some other thyroid hormone tests, like Free T3 and Total T4, to make sure that those levels aren't at the very bottom of the reference range. Please see my website or book for more information.
215) Flair 
Location:
Netherlands
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Wednesday, May 3, 2017 05:40 AM Write a comment

Hello Thanks for your answer.

We look at my ft4 not tsh. But the tsh is like 1 and ft4 is high 19 and my ft3 did not change. I do get fast heart beat. My question is why does my ft3 not raise?

I do have now ferritine 40 but stil low serum iron below range like 9 range 10-22 and saturation is 16_%.

hope you have an answer for not raising ft3. Because you say 1 grain is not full replacement but my thyroid is workING I am subclinal hypothyroid tsh 5.5. So don t think I need more. Also my ft4 is like 14 without medication. 19 with medication range 11-22.

I also read you said 1 grain or 1.5 is everage for most people?
1 grain has 9 mcg t3. Or do I have to try t3 only wich doesnt sound good to me.

Hope you can help. Or know.

barb Wednesday, May 3, 2017 11:56 AM
The first thing you should see on this page: "This comments section was NOT meant to be an interactive advice forum so please do not post your lab results here expecting an answer. I feel it is unwise to give advice without knowing more about a person, so will only answer questions that may be of general interest. I'm sure some of you got in trouble by following internet advice--I did! I am also only one person--there is no team of moderators here!"

There is so much more to your medical history that might help explain your situation, but your situation is unique and requires much more information. This is not the place for one-on-one counseling. And no, I never said 1-1.5 grain is enough for most people!
214) Flair  Female
Location:
Netherlands
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Tuesday, May 2, 2017 04:18 AM Write a comment

Hello

I have subclinical thyrodism with low ft3 and t3.

I have used armour like medicine but my t3 would not go up. My dokerk did most test on t3 this was Always borderline with 1 grain.

He did 2 times ft3 this was at 25 % the same when I don t use medication.

What can this be? If rt3 does not Block t3. What can be a problem.

I do have low ferritine like 20 and serum iron borderline low also saturation is borderline low. I am suplementing iron but see no change. I do feel hypothyroid and have big weight gain with good strict diet.

Could iron be the problem. Do I need to test rt3? And how high must ferritine be of so?

barb Tuesday, May 2, 2017 11:10 AM
The problem is that 1 grain is not full replacement. On average, a normal thyroid gland secretes about 100 mcg T4 and 10 mcg T3. 1 grain only has 38 mcg T4 and 9 mcg T3. Part of your T3 comes from conversion from T4, so your T4 levels need to be good too. If this dose caused your TSH to drop, then your own thyroid gland would not produce much, and your results could be worse than taking nothing. You cannot dose by TSH if you're taking desiccated thyroid.

Your low iron levels could cause you to be hypothyroid, because iron is a component of one of the enzymes used to produce thyroid hormone. Everyone's ideal ferritin number is different, but most people start to see improvement when their ferritin gets close to 50.
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