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Going off of Thyroid Medicines
 Moderated by: Dr Trevor Marshall  

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Giving_Thanks
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 Posted: Tue Apr 19th, 2011 00:35

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I would like to hear from other people on MP who have opted to go off their thyroid medicines. I have read the information regarding the thyroid indicators (via blood tests) and the immune response on MPKB.

A little background--When I first was treated for my conditions, my thyroid (in addition to other endocrine systems)was thought to be the cause. I was put on thyroid meds (and tons of other supplements) until my blood work came back in the normal range. I went off of the other supplements prior to starting MP. I have now been on MP for over a year. I would like to try to go off thyroid meds and see what happens. The doctor who is following my MP is hesitant. He has been a great doctor and will support my decision but I would like to hear from others regarding going off of thyroid meds.



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MP Mar'10 (no breaks) | Lyme?, CFS, hypothyroid, dizziness, fatigue, brain fog, constipation, shaky, sleep disturbance | Initial 25D=21 ng/mL | 25D=10 ng/mL Feb'11
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 Posted: Tue Apr 19th, 2011 01:31

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Rather than cut cold turkey try walking the dosage down one step at a time.  When I starterd the MP I was at .1 MG.   After several months I droped to .075.   Then some months later it was dosn to .05.  I am now at .0375 looking to drop to .025.  Check your TSH and if the TSH drops you may be able to slightly reduce the dosage.



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Sarcoidosis, Arthritis, Fallen Arch, Vascular Insufficiency, fatty liver,diverticulosis, Fuchs Dystrophy, depression| 1,25D 16 (Oct08) | Ph1 Nov07, Ph2 Jan08, Ph3 May 09 Ben Only: Jun 10- Sep 10|Break Sep 10-Dec 10|Resume MP Dec 10|
Giving_Thanks
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 Posted: Tue Apr 19th, 2011 11:49

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Thanks Carricol for the advice. That was my plan if I do this: to slowly cut down the dosages and maybe even skip days, like I do with antibiotics.

Did you notice any symptoms related to this cut back in your thyroid meds?



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MP Mar'10 (no breaks) | Lyme?, CFS, hypothyroid, dizziness, fatigue, brain fog, constipation, shaky, sleep disturbance | Initial 25D=21 ng/mL | 25D=10 ng/mL Feb'11
ChristineL
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 Posted: Tue Apr 19th, 2011 15:52

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I have been slowly weaning off synthroid.  I was at 100mcg and I'm now at about 25mcg.  I do notice I bit of withdraw if I drop the dose too quickly.  I never reduce it without looking at the Free T3, Free T4 and TSH to make sure everything is about mid range (in the lab provide range).  I've been extra careful as to not cause any extra symptoms for myself. 

Over on CuremyTh1 I have all my labs for the last year or more.  Try searching Christine and Thyroid.  (I don't know how to make a link to it) 

I'll also be updating my thread on this site soon with my latest tests and will include the previous tests as well. 

-Christine



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Hashimoto, Graves, CFS like symptoms, synthroid reduce to 50mcg, light exp r/t work & w/kids, NoIRs always, ph1Nov08, ph2Jan08 // May09 stopped abx // March10 25D 9 & 1,25D 30 // June10 25D 16 & 1,25D 17// Feb11 25D 8
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 Posted: Wed Apr 20th, 2011 00:57

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Carolyn
another way to find Christine's thread
A useful way to go is right click on Christine's name at left here
then you will see headings for 'Profile' 'Topics' 'Posts'
if you then click on 'Posts' it is easy to locate Christine's thread.

You can also do this through your own name if you want to look at something you have posted in the past, but cannot remember where it is [very useful for those of us with attention deficit, poor memory etc made worse as the immune system goes in to clean up those areas of the brain :shock:]



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ARFconference MPsep'08(PtBreak20mgx2-3day)depressn70, br.cancer90, ?BCC/Bowens05,Sjogren08|Sx CFS,fog,stroke,RA 25D=9ng/ml_Mar'13 Med. myth
y
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 Posted: Fri Apr 22nd, 2011 03:32

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Giving_Thanks,

I tried looking into this back in January. All I had been able to find were cases where people noticed hyperthyroid symptoms or their blood work indicated a decrease was in order. I wondered if you could come at it from the other direction - decrease, Benicar works better, thyroid heals. I wondered if you could wean from it the way one weaned from the other non-MP meds even if your blood work was still on the hypothyroid side. I didn't get a definitive answer, but concluded that there must not be anyone who had gone at it from this angle and it must be a still not-well-understood area. ChristineL gave me some good feedback, but her situation was different - her bloodwork was giving signs she could reduce. Mine wasn't. I took a peek at your thread and didn't see any lab values (not that I am skilled at reading them) so I don't know which category you fall in. But, here's my experience.

I gave it a try - decreasing without any symptom or lab indication it was in order. I didn't have to wait on labwork to see if it worked. It rather dramatically did not. What I did manage to do was to get off T4*. It said in the KB that T4 interferes more with the receptors than T3 does. I took both synthroid and cytomel, reducing the synthroid, eventually having to increase the cytomel. Now I am on just cytomel, twice a day. I put an asterisk by the T4 because I didn't manage to get off of it and keep normal lab values. My T4 came back out of range low. But symptom wise I think I am ok without it. When time/energy permit I need to go to one of the thyroid sites and try and understand it a little better. Maybe I'll decide I should start back with the T4 supplementation. Anyway, my conclusion was that getting off thyroid medicine falls into its own category - rather than decrease and wait for your body to catch up, you have to wait for your body to get ahead and then decrease. But that's from a study group of 1.

In your favor it looks like you haven't been on the supplementation for that long. I've been on it for over a decade. Hopefully your thyroid will respond more like ChristineL's and Carricol's than like mine. One thing to look for when you do start reducing is to remember what you're doing. Ok, don't laugh. Thing is, as you know, thyroid supplementation is rather slow acting. So it might be a gradual descent and many days after you dropped your dose you may be blaming how you feel on IP because you've forgotten you lowered your dose.

If your labwork does show you can reduce, it looks like ChristineL's schedule would be a big help deciding how much to reduce. Once I get to that point I'll be referring to it. Meanwhile, again, I've resigned that it is something one can't just decide to do - have to wait for it to come to you. Will be thrilled if someone discovers otherwise. Would love to get rid of another pill and another bill.

Good Luck!



____________________
MP Benicar only Sep'10; lyme '06, cfs '89, hashimoto's '03; fatigue/weakness, brain hijinks, joint/muscle pain; 125D 77 (8/10), 25D 7.1 (08/14)
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 Posted: Sun May 22nd, 2011 19:55

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Y,

I want to approach going off thyroid medicines as you tried to do (don't give up; just probably needs more time).

My thyroid labs are stable right now though in 2008/2009 they were going every which way and were really hard to keep stable. We did discover that Armour Thyroid was a better fit for me than synthroid or cytomel. I am not even positive what exactly would indicate that I could go off the thyroid meds but I was only put on them because of the labs and I cannot say I really felt better because of the meds. Of course, I was on many other immunosuppressant supplements at the time so it is hard to tell.

I do not understand everything about these labs (and other lab indicators) but know that I am doing better on the MP than I was on all the other stuff--and I am not spiraling downwards as I was previously.

I have a busy next 30 days but then I plan to decrease my thyroid meds and observe my symptoms. I am not as concerned with the lab results because I know they do not always indicate what I need.

Thanks for sharing.




____________________
MP Mar'10 (no breaks) | Lyme?, CFS, hypothyroid, dizziness, fatigue, brain fog, constipation, shaky, sleep disturbance | Initial 25D=21 ng/mL | 25D=10 ng/mL Feb'11
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 Posted: Wed Jul 6th, 2011 13:13

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I reduced my Armour Thyroid (generic version) to 60 mg/day for about two months. I was taking 75 mg/day previously.

My recent labs showed my thyroid in normal ranges:

TSH 0.362  (Normal range 0.350-4.500 uIU/mL)
Parathyroid Hormone  41.6 (Normal range 14.0-72.0 pg/mL)

My next plan, after I stabilize with my antibiotics, is to reduce my thyroid meds to 30mg/day. Then retest after 2 months.

Thought you might like to see the updates.



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MP Mar'10 (no breaks) | Lyme?, CFS, hypothyroid, dizziness, fatigue, brain fog, constipation, shaky, sleep disturbance | Initial 25D=21 ng/mL | 25D=10 ng/mL Feb'11
Dr Trevor Marshall
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 Posted: Wed Jul 6th, 2011 15:09

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:)

y
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 Posted: Thu Jul 7th, 2011 04:26

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Giving_Thanks,

So glad you're having success.

It's great you're posting your experience - we need more thyroid experiences. There's lots of ins and outs for steroids and antibiotics, but not so much for thyroid medicines. I came closest to crisis/derailing when I was getting off the Naturethroid and onto Cytomel than when weaning steroids or adding antibiotics.

Evidently it was the right choice for you to stay on Armour and decrease it. That was on my initial list when I was trying to decide which way to go, but since the KB article was all I had to go on, I went with aiming for just T3. Our situations are very different, though, so no telling. Can't go back and redo it the other way and see if that would have worked better :).  I'm guessing it wouldn't have led to such severe symptoms, but I'd still be worried that T4 was interfering with the Benicar. But looks like you won't have to be on it for much longer so that's not a worry for you.

So far it seems to still be holding that it's not hard to do if your lab numbers are in range and/or your body doesn't react strongly to dosage changes, otherwise be careful. You just have to keep your eyes open for your opportunity.



____________________
MP Benicar only Sep'10; lyme '06, cfs '89, hashimoto's '03; fatigue/weakness, brain hijinks, joint/muscle pain; 125D 77 (8/10), 25D 7.1 (08/14)
NWLinda
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 Posted: Sat Jan 21st, 2012 17:47

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Thank you to those who have posted all kinds of interesting info about your hypothyroid problems on this thread. I hope you're all getting well with the MP. I so appreciate having others to "talk" to about hypothyroid issues and the MP.

I doubt that my thyroid has ever worked properly but 17 years ago it took a nose dive when I was under a LOT of stress. Treatment of a quarter dose of Synthroid sent my lab results way far out of range. Armour did make my feet warm up, which was heavenly, but it didn't get my labs into the normal range. Cytomel didn't do much.

My body temp was always so low, sometimes down to 95.-something or 96.-something. Once, the nurse thought her thermometer was broken due to the low number.

The Wilson Thyroid Protocol, where you use timed-release T-3 to get your body temp up to 98.6 didn't work either. I went on that protocol twice. The second time, I gradually worked up to the max dose and started having heart palpitations. I should have ramped back down but, unfortunately, I didn't do that and ended up in an adrenal crisis and became suicidal. By the second day, all I could think about was how to kill both of my children. It actually made sense to me at the time, believe it or not. Fortunately, I couldn't even get off the couch to find a gun, let alone have the brain energy to figure out how to unlock the gun safe, or load the gun, or anything else.

For a while, I tried dessicated thyroid gland from animals but, once I learned about the MP and the possibility it could be contaminated with stealth bacteria, I quit taking it.

My latest labs on 9/30/11 showed the following:

TT4: 5.5
FT4: 0.7
TT3: 124
FT3: 250
rT3: 21
TSH: .43
TPO:<10

My physician's assistant had me stop the Armour and start on timed-release T-3, 5 mcg, twice a day. The second dose in the afternoon gave me insomnia so I'm only taking one dose, every morning.

Just wondering if anyone can help me with this. I'm hoping that the real, underlying problem is a Th1 infection and that the MP will eventually clear it up. I don't have that much energy but, then again, I'm 60 and I don't know how energetic I should expect to feel at this age. It is almost impossible to lose weight but I'm at least staying warm.



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Linda
hypothyroid, otosclerosis, possible sarcoidosis in lungs, skin & one eye, pyroluria, low cortisol, heart palps. 8/10: 25D: 44, 1,25D:76 pg/mL; Ph I:8/24/10; Ph2:1/11; break from MP:3/11-10/11. 12/29/11: 25D: 15ng/mL. 1,25D: 42.1 pg/mL
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 Posted: Sat Jan 21st, 2012 18:26

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Hello NWLinda,  Although the Wilson's Temperature Syndrome Protocol did seem to help me, I don't think that it is a magic wand.  At least it wasn't for me.  My hypothyroidism has been resolving as my entire body has been healing.  It took three years, (2 pre-mp and 1 on Mp) for my Thyroid to start resembling healthy.

Th1 infection causes the body to be in much stress.  According to WTS, Stress is a huge factor to a malfunctioning Thyroid and everything I read in the MP agrees that Stress is damaging to our bodies.

Nothing works as good as understanding and calm, steady persistence against these bugs! 
Keep with it, :) Taryn



____________________
MP Start Sept'10 | Borreliosis/Lyme, Bartonella, Erlicilosis, Mycoplasma, OA, FM, CFS, Hypothyroid | migrating joint pain, fatigue, low body temp, |Start 25D=29 Last 25D=5.1 ng/mL Jan'14
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 Posted: Sat Jan 21st, 2012 18:57

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HI LINDA & ALL

This is Fred in WV.  On the temp problems and my life with sarc for years, in the 1980s when I was going in and out of the hospital I would have temp of 96.1 a lot of times.  The nurse would say I had drank some ice water, but I had not.  This happened almost every time I would go into the hospital back then.

Also, I had to have some out patient surgery once and the nurse was getting my time from my mouth and she said she was not allowed to put that low of temp down.  So she took it from each ear but said they were also to low.  I never knew what temp she put down.

I use to do my temp at home and I have gotten temps of 92.1 & 92.2 from time to time.  But now after now over 6 years of the Marshall Protocol my temp runs from 97.5 to 98.6.  Yea! for the Marshall Protocol.

Remember, we are all in this together and I am pulling for us.

Your friend in Sarcoidosis
Freddie



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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-25D-7; 125-D43
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 Posted: Sat Jan 21st, 2012 20:25

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Thanks, Freddie! I also have some signs of sarc, athough no official biopsy. So I find a lot of comfort and hope in your success! I bet it's just awesome for you to be warm now!!! Thanks for writing! Linda :)



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Linda
hypothyroid, otosclerosis, possible sarcoidosis in lungs, skin & one eye, pyroluria, low cortisol, heart palps. 8/10: 25D: 44, 1,25D:76 pg/mL; Ph I:8/24/10; Ph2:1/11; break from MP:3/11-10/11. 12/29/11: 25D: 15ng/mL. 1,25D: 42.1 pg/mL
NWLinda
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 Posted: Sat Jan 21st, 2012 20:37

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Taryn,

Thank you for your reply!

It makes total sense to me that stress would be bad for one's thyroid and their whole body.

I thought I would only have to do the MP for a few months since I "wasn't very sick." HA! My docs always said my heart probs were due to my hypothyroid which they were trying to correct. Now, it turns out, both of those problems (and a bunch of others) are due to a Th1 and it'll probably take years of being on the MP to kill all the bugs. I'm learning to live with that idea and to just work on being patient.

I'm glad to hear you're doing so much better! Do you have plenty of energy? Is your body up to 98.6 degrees? I hope so.

I can hardly wait until the MP has killed all the bugs that are infecting my thyroid and keeping me from enjoying life (mainly being tired and, ahem, shall we call it "chubby"?

Linda :)

P.S. The main reason I like my avatar here at the MP is because it doesn't show my fat cheeks (or anything else...)



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Linda
hypothyroid, otosclerosis, possible sarcoidosis in lungs, skin & one eye, pyroluria, low cortisol, heart palps. 8/10: 25D: 44, 1,25D:76 pg/mL; Ph I:8/24/10; Ph2:1/11; break from MP:3/11-10/11. 12/29/11: 25D: 15ng/mL. 1,25D: 42.1 pg/mL
Joyful
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 Posted: Sun Jan 22nd, 2012 04:03

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Hi Linda. :)

One thing to think about concerning your past attempts to support the thyroid. The active form of the thyroid hormone T3 can be displaced by a couple of different ligands and that will affect metabolism and function.

One of the ligands I believe that can block the thyroid nuclear receptors is 1,25D when there is too much of it (as there is with Th1 disease).

That might be a good reason to hold onto the hope that the MP could help with this.



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Cairo123
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 Posted: Sun Jan 22nd, 2012 04:24

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Linda,

There is hope on the Thyroid.  When I started the MP over 4 years ago I was taking .1MG of Synthroid per day.  I have been slowly stepping it down over 4 years and plan on being completly weaned off of it by mid March. 



____________________
Sarcoidosis, Arthritis, Fallen Arch, Vascular Insufficiency, fatty liver,diverticulosis, Fuchs Dystrophy, depression| 1,25D 16 (Oct08) | Ph1 Nov07, Ph2 Jan08, Ph3 May 09 Ben Only: Jun 10- Sep 10|Break Sep 10-Dec 10|Resume MP Dec 10|
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 Posted: Sun Jan 22nd, 2012 16:54

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Hi Carricol,
Thanks for the advice! I see that you had sarcoidosis, too. I wonder if it's the sarc that causes the thyroid issues.
I have red inflammation on the front of my neck which of course covers my thyroid gland. So I wonder if my thyroid will improve as the redness gradually fades. It used to be a much brighter red but since beginning the MP, it has become less noticeable and also has some clear areas.
So, I take it that once you've weaned completely from the Synthroid, you won't be on any thyroid meds? Nice! One less pill, one less bill.



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Linda
hypothyroid, otosclerosis, possible sarcoidosis in lungs, skin & one eye, pyroluria, low cortisol, heart palps. 8/10: 25D: 44, 1,25D:76 pg/mL; Ph I:8/24/10; Ph2:1/11; break from MP:3/11-10/11. 12/29/11: 25D: 15ng/mL. 1,25D: 42.1 pg/mL
Cairo123
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 Posted: Sun Jan 22nd, 2012 22:18

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Yees, I will be off of it entirely.  I have slowly stepped the dosage down over the 4 plus years as my TSH, T3, and T4 have allowed. 



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Sarcoidosis, Arthritis, Fallen Arch, Vascular Insufficiency, fatty liver,diverticulosis, Fuchs Dystrophy, depression| 1,25D 16 (Oct08) | Ph1 Nov07, Ph2 Jan08, Ph3 May 09 Ben Only: Jun 10- Sep 10|Break Sep 10-Dec 10|Resume MP Dec 10|
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 Posted: Mon Jan 23rd, 2012 00:34

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Hi Linda, this is what I recently wrote in Dixie's thread:
  
CousinTC wrote: Hi Deborah,  My experience with Thyroid medication is: In 1998 I was tired and Dr tested my thyroid.   It came in normal but as low as normal can get so she put me on Synthetic T-4.  When I was still tired, she upped the dose.  It made me cringy so I dropped back to the original dose until 2009.

When I became deathly ill Feb, 2009, the Natural Path that I started with had experience working with "Wilson's Temperature Syndrome".  He had me read the book and started me on B/I Compounded and Timed Released T-3 and took me off the T-4.  I worked with the book and different dosages of T-3 and got my temperature up.  As my temperature held, I was able to start the weaning process of the T-3.  I no longer felt cringy unless I took too much.

By the time I started the MP in 2010, I was able to hold my body temperature close to 98.6 most of the time.  After studying the MP literature I decided to trust my body to find balance and stopped taking T-3.  Temperature fluctuated some but didn't dive.  After being on the MP about a year later, I retested my Thyroid levels and they came in dead center of the recommended range.  Perfect!  I retested again recently and still, Perfect and my temperature has been staying at 98.6   My body has found it balance.

I hope this helps, Taryn




____________________
MP Start Sept'10 | Borreliosis/Lyme, Bartonella, Erlicilosis, Mycoplasma, OA, FM, CFS, Hypothyroid | migrating joint pain, fatigue, low body temp, |Start 25D=29 Last 25D=5.1 ng/mL Jan'14

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