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AuthorPosts
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James,
I have searched under your name to find your previous posts, but have been unable to find them. From what I understand, you took methimazole for a long period of time and went into remission. Can you direct me to a post that would summarize your history? I just started taking methimazole 6 weeks ago (5 mg. daily) and am curious about your journey. Everyone is different of course, but I feel as if the ATD is working. My first set of labs since taking the medicine will be in mid- May, so we’ll see. I’m hoping that this works and I’ll get to go into remission. It is a long journey ahead, but reading about success stories gives hope and would be a good thing to hear about. Thanks!
Alexis
Alexis,
I am having some problems with the “Search Posts” feature as well. Perhaps Kimberly can chime in on this one.
Instead, try clicking “User List” at the top right corner. Once there, select the profile name of the poster. Under “User Activity”, click “Show all posts”. I’ve tried that and it seems to work.
Feel free to send me a private message as well. Glad to help.
James
Hi James – Great to see you posting…and how wonderful that you are approaching 9 years of remission!
I will have the “Search Posts” feature checked out — and I also need to figure out why your name isn’t showing up in green as a facilitator.
In the meantime, for anyone who wants to review another user’s history of posts, you can click directly on their name in any post they have made (on the left-hand side of the screen), and you will see an option towards the bottom of the screen to review all their posts.
Thank you both! I will try that!
Alexis
We just had another test in June and numbers still on track,
Here are my partners last 4 sets of results,
prior to this time PTU dose varied from 150-250mg/day,
best TSH in the past was 0.12, and that was only when T3 & T4 were driven to the bottom of the range, usually it hovered between 0.01 to 0.03 which is in the realm of testing error tolerance.PTU dosage at 100mg/day
31/05/11
FT4 – 15.1 (9-20)
FT3 – 4.5 (2.6-5.7)
TSH – <0.03 (0.4-4.0)05/01/12
FT4 – 13.1 (9-20)
FT3 – 4.2 (2.6-5.7)
TSH – 1.23 (0.4-4.0)10/01/12
PTU reduced to 50mg/day15/03/12
FT4 – 15.9 (9-20)
FT3 – 4.4 (2.6-5.7)
TSH – 0.61 (0.4-4.0)22/06/12
FT4 – 14.4 (9-20)
FT3 – 3.6 (2.6-5.7)
TSH – 1.30 (0.4-4.0)She is continuing on PTU at 50mg/day split in 2 doses and has become quite good at picking up changes in her body and in the last 2 years she has initiated dose adjustments herself, informed the Endo and gained approval.
The Endo basically pushed for Surgery before the 2 year mark in treatment, but was respectful of my partners wishes to pursue remission on meds and complementary treatments, they “agreed to disagree”, once we got a positive result, 5 years on, the Endo gained more confidence in our process & is a bit more lenient with us as we have shown her our commitment & due diligence. The Endo considers 1tab (50mg) of PTU as a maintenence dose and would like to see a full 12 months of good results at this dosage, while we feel another reduction of PTU would be appropriate, so there is a bit of a balancing act between what we think and what the Endo thinks.Regarding symptoms, currently she feels better than she ever has, no fatigue, head clearer than ever and she records body temp & heart rate morning & evening and makes journal notes on any subtle perceptions of changes, so she knows her body intimately Still continuing with the supplement program, dietary improvements, stress management, exercise & self awarness (meditation, yoga etc.).
We are due for the next test in Sept and then another in Dec when we will have antibodies levels checked as well and if these continue to show all normal then we will begin weaning the PTU down over 6 months and look at remission for June next year. After that we will begin the process of scaling down the supplement program over about 12 months so that she doesn’t need to drag around a bag of tablets everywhere she goes, but the diet & lifestyle changes are permanent, as we believe bad diet and lifestyle is what put her in such an unhealthy state for the Graves Disease to manifest.
Great news — wishing your partner continued success and good health!
Hi there,
I’m currently new to this forum I have PM and Thyroid in both eyes.
I was wondering at the bottom of posts sometimes is a list of surgeries.Does this mean that the person commenting has had these surgeries?
I am very curious to hear from anyone who has had any kind of decompression surgery as it is what i’m looking into having. Thank youHello and welcome! Yes, some members here choose to update their personal signatures with the treatments/surgeries they have had. You can update your own signature by logging in, clicking “Profile” in the menu in the top right-hand corner of the screen, clicking “Personality” on the left-hand side of the screen, and then updating your signature in the “Compose Your Signature” box.
If you would like to see all of the messages from a particular person, you can click on their screen name to the left of one of their posts, then scroll down to the bottom of the screen to select “Show All Posts”.
You can also use the “search posts” function in the top right-hand corner of the screen. If you search for terms such as “OD”, “decompression”, etc., you will find posts from other patients who have been through this process.
If you have specific questions, you can also post them in a brand new thread, as that will likely get more responses. The “New Topic” button is towards the top left-hand side of the screen, just above the announcements section of the forum and just below the green butterfly.
Hope this helps!
Been a while since I was here,
We’ve had a test in Sept and another in Dec and numbers still on track,
Here are my partners last few years of results, for anyone interested in the progress report, FT4, FT3 & TSH still holding in range and the antibodies have fallen well into range as well, everyone happy with numbers and we are now starting the PTU weaning process, which will take place over the next 12 months.Prior to the first listed result below PTU dose varied from 150-250mg/day,
best TSH in the past was 0.12, and that was only when T3 & T4 were driven to the bottom of the range, usually it hovered between 0.01 to 0.03 which is in the realm of testing error tolerance.PTU dosage at 100mg/day
31/05/11
FT4 – 15.1 (9-20)
FT3 – 4.5 (2.6-5.7)
TSH – <0.03 (0.4-4.0)05/01/12
FT4 – 13.1 (9-20)
FT3 – 4.2 (2.6-5.7)
TSH – 1.23 (0.4-4.0)10/01/12
PTU reduced to 50mg/day15/03/12
FT4 – 15.9 (9-20)
FT3 – 4.4 (2.6-5.7)
TSH – 0.61 (0.4-4.0)
TRab’s – 1.6 (<1.5)22/06/12
FT4 – 14.4 (9-20)
FT3 – 3.6 (2.6-5.7)
TSH – 1.30 (0.4-4.0)19/09/12
FT4 – 14.6 (9-20)
FT3 – 4.1 (2.6-5.7)
TSH – 0.97 (0.4-4.0)27/12/12
FT4 – 14.2 (9-20)
FT3 – 4.7 (2.6-5.7)
TSH – 1.39 (0.4-4.0)
TRab’s – 0.9 (<1.5)Regarding symptoms, she feels great, no fatigue, head clear etc., basically no GD symptoms at all. She still records body temp & heart rate morning & evening and makes journal notes on any subtle perceptions of changes, so she knows her body intimately Still continuing with the supplement program, dietary improvements, stress management, exercise & self awarness (meditation, yoga etc.).
We are due for the next test in April, 3 monthly and she will wean fully off the PTU around the end of the year, if all continues smoothly we will then begin to wean down the supplement program.
As would be expected she is getting a bit excited about getting to the end of this process, in my usual style, I did remind her not to get attached to a particular date or time, as that may well create expectations that may blur the subtle expressions of her bodies health signals, better to just continue without a fixed date and she will know the time has come to stop the PTU altogether.
She is going down to 3/4 (37mg) a tab/day, then 1/2, then 1/4 etc and when she gets to the time when she feels trying to cut the doses up small enough that it is pointless, she will know she is done with the PTU.
Wonderful news that your partner is feeling great and getting ready to wean off the PTU – please keep us posted!
Just updating, had another test last month, all levels good and weaning down on PTU dose.
17/02/13
PTU reduced to 37.5mg/day28/05/13
FT4 – 13.7 (9-20)
FT3 – 4.2 (2.6-5.7)
TSH – 1.68 (0.4-4.0)28/05/12
PTU reduced to 25mg/daySo everything is progressing in a fairly stereotypical pattern from what I have read regarding remission from GD, the current medical system had already declared that there was no hope of thyroid recovery after the first 2 years of treatment, but the alternative experiences and recent research suggests that 4 years treatment with ATD’s is about average and an extended weaning period of about 2 years is typically required for a good chance of permanent remission.
When we started this process, February 2007, we never expected it would take this long, but we now have a much better understanding of GD and other chronic diseases and believe wholeheartedly that 5-10 years would be a normal expectation for complete body healing and can not happen unless one is actually prepared to make appropriate changes in diet, behaviour and lifestyle in addition to the medication protocol.
She is currently on 25mg/day which is 1/4 tab morning and night, we have not fixed a date to cease medication altogether, she uses her heart rate, body temp, feelings and other subtle personal indicators to guide her in dose reductions, the next step will be to split 1/4 tab into two doses which will be 12.5mg/day and then doing this every second day etc. gradually reducing until she reaches the point where she feels it is appropriate to cease meds altogether, this is likely to be towards end of year or early next year, but she will know when the time is right.
Thank you for sharing your partner’s progress Harpy! I was wondering if you’ve ever had trouble with your partner’s T4 or T3 going too low during this long period of PTU medication? Based on my thyroid levels I could likely stop methimazole now but based on my antibodies it would be a bad idea, my doc will not consider adding replacement.
On PTU her levels only went low when she was on a high dose of 250-300mg/day in the early stages, but once her levels normalised and she went to a normal dose of 100-150mg/day her levels were very stable and the dose changes seemed to have minimal effect.
Methimazole (MM) does seem to have a much stronger effect in normalising levels and many can go into the hypo range even on maintenance dose levels, even though antibody levels are still high and TSH is still absent.
My partner actually started treatment with MM and her levels normalised very quickly, but she developed a rash and had other complications and was switched to PTU in the first few months, in hind sight it was most likely that her dose of MM was just too high, nevertheless when she switched her levels jumped back up and it took quite a while to get them down to normal on PTU.
From what I have read around the traps adding back Thyroxine while on a maintenance dose of MM seems to provide many benefits in extending treatment to bring antibody levels down and allowing TSH levels to normalise, this seems to be what is missing when many are thrust into a premature remission attempt.
Try doing some more research around the traps and maybe attempt another discussion with your doctor, there are quite a few individuals out there using this protocol with good success, far better than the old Block & Replace that it evolved from, wishing you success in your journey.
Thanks Harpy! I may be having thyroid brain but what are these traps you are talking about? I’ve brought it up too many times with my endo who told me straight up I’d have to find another doctor if I want to do that. That’s turning out to be more challenging than I expected though – long story for another thread.
Sorry, just a bit of “Aussie” slang.
“around the traps”
Definitions – pertaining to an intimate familiarity with and knowledge of the places where people gather, news is spread, decisions are made, etc..Below are some other descriptions of the meaning of the phrase to give you some context.
http://belshaw.blogspot.com.au/2010/03/meaning-of-around-traps.html
http://www.urbandictionary.com/define.php?term=around%20the%20traps
http://wiki.answers.com/Q/What_does_Around_the_Traps_meanIn the context of thyroid it suggests looking around thyroid resources and discussion groups to see what is being discussed with regard to this topic.
Maybe you can search around for things like “add back thyroxine therapy”, “thyroxine add back”, “thyroid add back therapy”, “thyroxine add back therapy”, “block and replace”etc. or other combinations there in.
Studies have shown that extended treatment with MM increases the likelihood of lasting remission, so for those that have thyroid hormones supressed too much even with minimal MM dosages, the addition of a small amount of thyroxine allows one to continue with MM treatment and not become hypothyroid.
IMO this allows time for the body to heal the ultimate underlying causes of GD, bring antibody levels down, correct other imbalances and hence increase the likelihood of lasting remission.
I do hope you have more success with finding a doctor/endo willing to work with you to achieve your own personal goals in healing from GD.
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