Sign the Guestbook
Guestbook
Thanks for visiting my website. Please leave your comments...
Total Entries: 245   Entries Viewed Per Page: 20
[1] 2 3 ... 13
Search    for  
Name Comments

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. Thank you.

245) Melanie  Female
IP logged Mozilla/5.0 (Windows NT 6.1; Win64; x64; rv:58.0) Gecko/20100101 Firefox/58.0
Wednesday, February 14, 2018 04:18 PM Write a comment

Hello Barb,
I have read many things on your blog and recently bought your book. You have ALOT of eye opening information in there. I have also read Broda Barnes book and I truly believe that many many more people could be helped with their conditions with just a little bit of thyroid medication. I am so glad that you could put all of this information together for us. For so many years people have been trapped to listen to only what they were told from their sometimes ignorant doctors and your book is a wonderful resource of thyroid information.I have read so many things over the last couple of years, and try to take all of the information with a grain of salt these days. I am more screwed up now than when I started to try to optimize my thyroid medications 2 years ago, but I would never go back and am so glad I have learned all that I have. I am curious of your opinion. If a person is taking mostly T4 with just a little T3, do you think it is best to have at least a little TSH to help the conversion? I have had low T3 and I can't get it higher, all the while feeling hypo and hyper off and on everyday. I tried switching from straight Levo to NDT 1.5 years ago, getting up to 3.75 grains, all the while not right and my t3 only got to 2.88 and felt hyper. I am currently taking 100 levo and 1.5 grain NP Thyroid but the NDT The T3 just doesn't stay in me more than 6-7 hours and then I feel like garbage, can't breathe, tired, chest pains.... Do you do any private consults by email?

barb Wednesday, February 14, 2018 04:55 PM
I personally find it extremely difficult to have a TSH within the reference range when I take enough T4 and T3 to feel well. At 3.75 grains, your FT3 should be higher. Did you test more than 24 hours after your last dose? That would give you an artificially low reading [www.tiredthyroid.com] Have you tried multi-dosing smaller amounts throughout the day? I'm sorry, but I don't offer personal consults. I would look for an integrative doctor, someone who can also give you dietary advice. It seems like it's the missing link for a lot of people.
244) Mojojojo  Female
Location:
Mississippi
IP logged Mozilla/5.0 (iPhone; CPU iPhone OS 10_3_1 like Mac OS X) AppleWebKit/603.1.30 (KHTML, like Gecko) Version/10.0 Mobile/14E304 Safari/602.1
Wednesday, February 14, 2018 01:45 AM Write a comment

Hello barb!
First of all thank you for the book.
So glad there are people out there actually spreading the truth and not just trying to scam people!
I truly appreciate the hard work that you put into the book!
My question is why do you not have a set optimal dose? You always say it is between 1-1.25 ndt and 25-50 T4 (sorry if those numbers aren't exactly right) just wondering why you fluctuate and if this should be expected of everyone. I understand we are all different and will require different doses but will we all have a fluctuation range? If so how do we know when to doses what? Also I don't have a good understanding on when to test thyroid labs, like timing between/around medication. Could you maybe explain this also?

barb Wednesday, February 14, 2018 01:06 PM
Glad you liked the book, and I hope you'll write an amazon review. I gave a range for my optimal dose because I didn't yet know what it was when I released the book. I was still experimenting, but felt there was enough information that could help other people, so went ahead with publication. After much experimenting, I believe I have finally gotten my bi-est, progesterone and thyroid doses to a level where I feel well. It's 1-1/8 grain NDT plus 50 mcg T4.

As to when to test, you might find this post helpful: [www.tiredthyroid.com]
243) Jayson  Male
Location:
California
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10_10_5) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/64.0.3282.140 Safari/537.36
Friday, February 9, 2018 05:36 PM Write a comment

Hi. I'm in the beginning stages of understanding this whole thyroid mess that I'm in. I was wondering if you could provide a meaningful input as to what my lab results indicate?

My thyroid peroxidase (tpo) ab, thyroglobulin antibody, thyroid stim immunoglobulin and tsh are all out of range. They're all quite high.

I'm familiar with TSH and that it really shouldn't be the basis of my medication. But everything else is a head scratcher for me.

Unfortunately, my pcp is also scratching her head and could not give me a meanigful answer.

However, she wants to increase my levothyroxine-only medication and suggested that I go see a psychiatrist... =(

barb Friday, February 9, 2018 07:24 PM
I would look for an endocrinologist or integrative doctor before seeing a psychiatrist. Your antibodies show you have an autoimmune thyroid condition and might benefit from dietary changes, in addition to medication. You might also feel better on a different thyroid medication than levothyroxine.
242) Dana  Female
Location:
philadelphia
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10_12_6) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/63.0.3239.132 Safari/537.36
Monday, January 29, 2018 05:53 PM Write a comment

Hi - In a blog post you mentioned you used the freedom of information act to get the raw data from thyroid studies.

Do you have them posted somewhere thyroid patients could look at them? I'd love to see.

Thanks for all you do!

barb Monday, January 29, 2018 06:59 PM
I do not recall mentioning the Freedom of Information Act in any of my blog posts. Maybe you're confusing me with someone else?
241) Kate  Female
Location:
USA
IP logged Mozilla/5.0 (Windows NT 6.1; Win64; x64) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/63.0.3239.84 Safari/537.36
Monday, December 18, 2017 11:32 PM Write a comment

I went on Synthroid after being diagnosed hypothyroid in 2008. It changed my life! I felt great and had sustainable energy for the first time in my life! Over time, I developed a serious cough and frightening chest pains. It took me 4 years to figure out that it was the Synthroid causing it. I tried generic levo, Armour, NP and possibly others. All created this cough/chest pain. I found I could manage OK with just kelp, but I definitely lost my edge. I've also since discovered certain foods do the same thing. Have you ever heard of thyroid medication causing a serious cough? Do you know of any work-arounds?

barb Tuesday, December 19, 2017 12:14 AM
If you were always dosed by TSH, I'd wonder if you were ever taking enough T4 and/or T3. On Synthroid and other T4 medications, patients tend to have relatively low T3 levels. On Armour and other desiccated thyroid medications, patients tend to have relatively low T4 levels. If you are post-menopause, I would also check your estradiol levels.

Kate Bell Tuesday, December 19, 2017 10:30 PM
How does your answer relate to chronic cough? I know my estradiol is low.

barb Tuesday, December 19, 2017 11:04 PM
Low estradiol can cause asthma, as can low T3 and/or T4.

Kate Bell Wednesday, December 20, 2017 08:49 PM
Well that's good to know!! So, sounds like you haven't heard of cases of someone developing a cough BECAUSE of the MEDICATION? I didn't have the cough before.

Maria Wednesday, January 24, 2018 04:55 AM
I have been on thyroid medications only a short time and I'm still hypothyroid. If I take Dessiccated thyroid or raise the dosage of levothyroixine I develop chest pain and even a cough. I thik it's cramps in the pericardium and I wonder if they can be due to T3 or T4 oscillations when the level of hormones has not reached a steady and high concentration yet. Because of the cramps I have given up Dessiccated thyroid and I'm on levotyroxine low odse only at the moment, and will check with my endo if I can raise levotyroxine and introduce some T3 later on.
240) Karla  Female
Location:
United States
IP logged Mozilla/5.0 (Windows NT 10.0) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/62.0.3202.94 Safari/537.36
Tuesday, November 21, 2017 01:21 PM Write a comment

It seems that my need for thyroid med is decreasing. I've managed it myself pretty much with my naturopath but have a new MD who seems to think I may still have too much T3 (she is pro NDT). I was on 1.5 grains for a while and started testing at 6 hours post dose instead of around 10.

After 5-6 weeks on 1.5 grains Naturethroid my TSH was 0.92, FT4 1.1, FT3 4 (6 hours after AM 1 grain of split dose) and RT3 12.

I went to 1.25 Naturethroid and because of feeling so bad (I have Lyme as well so unclear what is thyroid) so tested at around 2 weeks. Same time interval after AM 1 grain. TSH was now 1.97, but FT4 was 1.2 (up) and FT3 4.2 (also up) and RT3 still 12.

Just in general, how can TSH go UP when frees are also up? Im noting gasping for air during night, which I think is fairly new. Of course my naturopath seems to think I could get off it all together (seronegative for Hashi). I need to test again soon.

Last winter I'd been on as much as 1.5 and 25 levo daily with numbers good at 10 hours. I figured if I had 3.7 or 3.8 T3 at 10 hours perhaps I was way too high earlier in day and T3 was going up at the 10 hour mark.
239) Anne Marie McCusker 
Location:
United States
IP logged Mozilla/5.0 (Windows NT 6.1; Win64; x64) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/61.0.3163.100 Safari/537.36
Tuesday, November 14, 2017 09:50 AM Write a comment

What experience, reading or knowledge can you direct me to that sometimes people need more medicine in the winter months vs. the spring/summer months?

barb Tuesday, November 14, 2017 10:44 AM
I wrote a blog post [search] 2017/03/01/feeling-cold-you-may-need-more-t4/ that says T4 is more essential to keep someone warm than T3.
238) nick  Male
IP logged Mozilla/5.0 (X11; Ubuntu; Linux x86_64; rv:55.0) Gecko/20100101 Firefox/55.0
Wednesday, November 8, 2017 12:12 PM Write a comment

Thanks for putting out good information! I have a quick question. Why do people take such high doses of NDT (ex - 4 grains per day) when the body doesn't produce nearly that much hormone naturally each day? 4 grains is 36 mcg t3 which is 3-4x (if this is true) as much as a thyroid naturally produces.

Then I read stories about people taking 4-6 grains per day and not even responding. What do you think is the issue here?

barb Thursday, November 9, 2017 12:11 AM
If someone can take high doses of thyroid hormone and show no response, then either they're not absorbing the medication or they've been hypothyroid for too long. One theory is that thyroid hormone receptors become less sensitive when deprived of any stimulation for a long time. It then takes more thyroid hormone to get the same response as a normal person.
237) susie  Female
Location:
United States
IP logged Mozilla/5.0 (Windows NT 6.1; Win64; x64) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/61.0.3163.100 Safari/537.36
Saturday, November 4, 2017 08:49 PM Write a comment

Hi i love your blog and am in the midst of thoroughly reading it. My husband is on NDT. He started 1/2 tablet (he has 1.5 grains each tablet NatureThroid) and after a couple weeks or so, he's now on 1 and 1/2 tablet (97.2 mg i think). He has been on that dose at least 2 weeks. Actually, i had him on 2 tablets but backed down (that was 3 grains) as i am unsure about the dose for him. He still has most of the symptoms (lower afternoon temps, tired, etc.) so i don't know what his ending dose will be.
Other thyroid groups told me to sit at 1 1/2 tablet (not grain) for 5 wks and THEN test. I'm wondering if i should get him tested the next week or so? So i at least know where he's at? Also if his last dose is at 5 or 6, is it okay to have BW at about 11 the next morning?

The thyroid groups told me it takes that much time for T4 to build. He's been on TRT since mid Oct but titrated like i said above, of course. Oh his iron, selenium, etc. are fine. He IS on testosterone shots twice weekly for about a month now, he's 69. THANK YOU!!!
236) Hadassah  Female
Location:
NY
IP logged Mozilla/5.0 (Windows NT 10.0; Win64; x64) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/52.0.2743.116 Safari/537.36 Edge/15.15063
Tuesday, October 31, 2017 11:32 AM Write a comment

Barbara would love to know what brand of T4 your on these days ?

barb Tuesday, October 31, 2017 11:47 AM
Today I'm taking Levoxyl. A month ago I was taking Synthroid. I've also tried various generic brands of levothyroxine in the past (insurance changes, etc.). All my labwork confirms that every brand has T4 in it, since I don't produce any of my own. I think which one you choose is really personal preference. Some people say they react to fillers. If so, try different brands.
235) B Hicks  Male
Location:
rocky mountains
IP logged Mozilla/5.0 (X11; Linux x86_64) AppleWebKit/537.36 (KHTML, like Gecko) Ubuntu Chromium/61.0.3163.100 Chrome/61.0.3163.100 Safari/537.36
Friday, October 27, 2017 01:34 PM Write a comment

Hi Barb, Thanks so much for being a great resource of information. I am learning a ton from your writing!

Specific question, though I have not read your website completely yet I found that apparently you do not make a distinction between D1 and D2 as converters of T4 to T3, but really focus on D2 conversion. This article: www dot nahypothyroidism dot org/deiodinases/ seems to bring up an number of potential issues regarding the difference in pituitary use of D2 vs body's use of D1 and the problems possibly caused by their extremely different potency in conversion. Have you written about this or have any commentary? Thanks and Best regards!

barb Friday, October 27, 2017 06:17 PM
There's a section in my book in the TSH chapter called "Why doesn't T4 replacement result in physiological levels of T3? I discuss the difference between the two enzymes in detail there.
234) Shaw  Female
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10.13; rv:56.0) Gecko/20100101 Firefox/56.0
Thursday, October 26, 2017 12:17 AM Write a comment

I'm just about to start adding a low dose of Synthroid to my NDT and I was wondering if Synthroid can be taken at the same time as the NDT or if it's better to space it out (maybe take Synthroid at bedtime?) You seem to be one of the few people I've found that uses both medications so any advice would be great.

Thanks!

barb Thursday, October 26, 2017 12:27 PM
Synthroid/levothyroxine must be taken on an empty stomach to become active. For that reason, I take mine before waking along with my first half grain of NDT. So to answer your question, yes, it's ok to take both together, but there's also no reason you couldn't take them apart either (as long as your stomach is empty).
233) Lee  Male
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10.12; rv:56.0) Gecko/20100101 Firefox/56.0
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
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10.12; rv:56.0) Gecko/20100101 Firefox/56.0
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
IP logged Mozilla/5.0 (Windows NT 10.0; Win64; x64) AppleWebKit/537.36 (KHTML, like Gecko) Chrome/61.0.3163.100 Safari/537.36
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
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10.12; rv:56.0) Gecko/20100101 Firefox/56.0
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
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10.12; rv:56.0) Gecko/20100101 Firefox/56.0
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
IP logged Mozilla/5.0 (Windows NT 10.0; WOW64; rv:55.0) Gecko/20100101 Firefox/55.0
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
IP logged Mozilla/5.0 (Macintosh; Intel Mac OS X 10.12; rv:55.0) Gecko/20100101 Firefox/55.0
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
IP logged Mozilla/5.0 (Windows NT 6.1; WOW64; rv:55.0) Gecko/20100101 Firefox/55.0
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.
View RSS Feed
[1] 2 3 ... 13
Administration
Powered by Lazarus Guestbook from carbonize.co.uk Install Lazarus