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conversion problem?

I was treated for Graves disease 12 years ago.  I am on armor thyroid and synthroid.  My blood is checked 3 times a year and the thyroid values are normal.  I have fibromyalgia and many symptoms of hypothyroidism.  Could I have a problem converting T4 to T3?
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Avatar universal
You really should move your supplements away from your thyroid meds.  Some supplements can severely impact absorption.

Let me say that I agree with one thing LVGirlRN says...you should probably not make changes of any kind until you are finished with Wilson's.  If you changed how you take your supplements, for example, and that had a major effect on how you absorbed your thyroid meds, it could really change what you are required to take.  As an example:  If you take 100 mcg of meds, but only 25 mcg gets absorbed because of a supplement you take, you stop the supplement and suddenly all 100 mcg is getting absorbed.  That is dangerous.

"Leaky gut" is one of the causes of malabsorption.  I would have no idea what to tell you to do nutritionally to improve absorption or if it's even possible to improve it.

Is that your total D intake?  14,000 IU per week?  You definitely have to have that tested.  

If you don't have pernicious anemia, you should be able to supplement B-12 orally.  That's where people usually start.  If that doesn't work, you can try sublingual (also doesn't work for some people), nasal spray (may not be readily available in the U.S.) and injectable.  Once again, you should really test this before supplementing.

Once on any supplement, it should be monitored regularly.    
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Avatar universal
WOW!! THAT IS A MEGA THYROID DOSE! IT CAN BE VERY VERY DANGEROUS!!

WHEN YOU INCREASE YOUR THYROID METABOLISM YOU WILL BURN YOUR CORTISOL AT A MUCH EXCELERATED RATE. AND AT THAT LEVEL OF ARMOUR AND SYNTHROID, YOU SURELY ARE!  THIS WILL CAUSE YOU TO GO HYPOADRENAL! YOU WILL BE VERY FATIGUED, WEAK, SWEAT, PALPITATIONS AT TIMES, SHORT OF BREATHE ON EXERTION.

ITS VERY VERY DANGEROUS!

YOU CAN GO INTO A COMA AND KILL YOURSELF LIKE THIS!

IS THIS A "REAL" DR YOU ARE WORKING WITH AS IN ENDOCRINOLOGIST SPECIALIST? BECAUSE NO ONE ELSE IS ANYWHERE NEAR QUALIFIED TO TREAT FOR THESE THINGS. THERE ARE MANY PEOPLE THAT CALL THEMSELVES DR THAT ARE NOT DOCTORS, SUCH AS NATUROPATHIC DR, ETC. THERE IS NO SUCH THING.  

PLEASE I URGE YOU TO CALL YOUR STATE MEDICAL BOARD AND ASK ABOUT THIS "DR". I REALLY WORRY FOR YOU!

AND PLEASE, IM A NURSE, YOU CANT BELIEVE EVERYTHING YOU HEAR HERE ON THESE BOARDS. PEOPLE MEAN WELL, BUT SOMETIMES THEY UNKNOWINGLY GIVE ADVISE THAT IS VERY HARMFUL!

AND YES, FROM YOUR POSTS ABOVE, YOU MUST ALWAYS RETEST. THATS THE ONLY WAY YOU KNOW IF YOU HAVE CORRECTED SOMETHING OR NOT.  IF YOU JUST KEEP TAKING EVERYTHING WITHOUT RECHECKING LEVELS, THEN YOU MAY BE TOO HIGH, WHICH IS ALSO HARMFUL AT TIMES! SOME VITAMINS ARE TOXIC AT HIGH LEVELS!  AND BE VERY CAREFUL WITH ST JOHNS WORT. IT AFFECTS HORMONES AND NEUROTRANSMITTERS, IM NOT SURE IF YOU SHOULD BE TAKING THAT WITH ALL THAT SYNTHROID! AND YES YOU CAN TEST FOR ELECTROLYTES (MAGNESIUM, POTASSIUM, SODIUM, ETC.) and some vitamin levels in the blood (VIT B12, IRON, VIT D VIT K, ETC).  THESE BLOOD LABS SHOULD BE PART OF YOUR YEARLY OR BI-YEARLY PHYSICAL OR TESTED MORE OFTEN IF YOU ARE IN POOR HEALTH.

PLEASE GO TO AN ENDOCRINOLOGIST DR AND ASK FOR THE FOLLOWING BLOOD TESTS:

TSH
T3
T4
AM CORTISOL
RANDOM CORTISOL
SALIVARY CORTISOL - PART
LH
FSH
PROLACTIN
GROWTH HORMONE
ESTROGEN
TESTOSTERONE
CHOLESTEROL
VITAMIN D
COMPLETE METABOLIC PANEL (Kidney, liver function)
ELECTROLYTE PANEL
IRON
FERRITIN
VITAMIN B12

THAT SHOULD BE A VERY COMPLETE COMPREHENSIVE TESTING AND YOU WILL HAVE A VERY CLEAR PICTURE OF THE STATE OF YOUR HEALTH FROM THESE TESTS.

PLEASE DO NOT DO THAT WILSONS STUFF WITHOUT PROPER SUPERVISION. TAKING THAT AMOUNT OF THYROID MEDS CAN KILL A PERSON. I CANNOT FATHOM HOW YOU ARE TAKING THAT MUCH AND I HOPE ITS A TYPO OR SOMETHING. BUT.... IF YOU ARE DOING THIS ITS ALSO DANGEROUS TO SUDDENLY STOP OR START THIS TYPE OF THERAPY. YOU MUST BE BUILT UP OR WEANED DOWN OR ITS A GIGANTIC SHOCK TO YOUR BODY.

PLEASE CONSIDER WHAT IVE SAID HERE AND PLEASE BE VERY VERY CAREFUL!  A LOT OF PEOPLR MEAN WELL, AND THEY GIVE ADVICE THAT MAY BE GOOD FOR THEM, BUT NOT NECCESSARILY GOOD FOR YOU. IN ORDER TO GIVE GOOD MEDICAL ADVICE, YOU NEED TO BE A MEDICAL PROFESSIONAL = MD. EVEN A NURSE CANNOT DIAGNOSE, THEY CAN ONLY ADVISE AND REFER TO A DR.

BE CAREFUL TAKING MAGNESIUM, POTASSIUM, ETC. THEY CAN AFFECT YOUR HEART RATE IF LEVELS ARE TOO HIGH AND CAUSE IRREGULAR HEART RYTHMN, AND YOU KNOW WHAT THAT MEANS...

I WOULDN'T START ANY OTHER TYPE OF THERAPY (LEAKY GUT)  WHILE YOU ARE FIGURING OUT THE THYROID AND ADRENAL BALANCE, IT WILL JUST ADD MORE CONFUSION. WHAT YOU CAN DO THOUGH TO HELP GUT HEALTH IS TO TAKE PROBIOTICS. THE REFRIGERATED KIND ARE THE BEST IN THE HIGHEST CONCENTRATION THAT YOU CAN AFFORD. MAKE SURE THEY INCLUDE FOS, THE FOOD THAT KEEPS THEM ALIVE...

I REALLY HOPE YOU ARE OK AFTER ALL THIS TIME! I DONT TELL YOU ALL THIS TO SCARE YOU (IT SCARES ME HONESTLY WHAT YOU ARE DOING) ALSO, SOMETIMES WHEN YOU AGE, YOU DONT ALWAYS FEEL EVERY SYMPTOM.  ACHING BONES, JOINTS, FIBROMYALGIA IS SOMETIMES LINKED TO ADRENAL HEALTH AS WELL. WHEN I STARTED TO FIX MY ADRENAL LEVELS, SOME OF THE FIBROMYALGIA IMPROVED. I JUST TELL YOU THIS TO INFORM YOU, SO YOU CAN MAKE A DECISION.

PLEASE BE CAREFUL! YOU ARE THE ONLY YOU THAT YOU HAVE.
GOOD LUCK!


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Avatar universal
I split my supplements up and take them 3 times a day.   I take my thyroid meds at least 3 hours after a meal or 1 hour before a meal.  That is what I was told to do.  I take my supplements with a meal so I guess this is a conflict.  

  Also, some of the supplements are in a protein shake I have every day at lunch.  I make it with GI Sustain, almond milk, liquid omega 3, flaxseed meal, 1 drop vitamin D3 (2000 units), coconut milk, and strawberries.

If my problem is that I don't absorb what I should, should I get more of the GI Sustain into my diet?  I only use 1 scoop which is 1/2 serving.  Is leaky gut the same as malabsoption?

I have been supplementing for years, but vitamin D only about three years.
Is there a way to supplement B12 without injections?  
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Avatar universal
If you B-12 was low once, it might be something you should be supplementing right along.

That's quite a few supplements.  Do you take them all at least four hours away from your thyroid meds?

Yes, vitamin and mineral tests have a reference range, just like thyroid tests do, and just like thyroid tests, you have to consider the lower part of the range questionable.

I'd want to test D again within a few months of starting to supplement to verify the dose is appropriate.  How much are you taking, and is it D3?  For how long have you been supplementing?
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Avatar universal
I don't know what my B12 levels were.  If I needed B12  4 or 5 years ago, is it possible I need another round?   My supplements include glucosamine, B 100 (complex), , biotin, adrenal complex, Livco,  St John's Wort, magnesium glycine plus, zinc- liver chelate , Co Q 10 (400mg), vitamin D drops, evening primrose oil, liquid omega 3, GI Sustain (from Metagenics), flaxseed meal, melatonin, oil of oreganol , also Zyrtec, Kadian,  Tylenol-4, Flexeril, Paxil, and Amerge.  I have reduced the number of prescription drugs over the last 4 years.  I feel good about that.  If vitamins or minerals are tested, is it possible to determine where someone is on the range?  Also, how often should Vitamin D be checked?   Mine was 18 before I started supplementing. Both of my docs were kind of surprised it was so low;  neither had an idea how it got that low, they just wanted to fix it fast.  I think it has been ok since.
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Avatar universal
Before I forget (again), let me mention that being in the bottom of the range on these vitamins and minerals is often not sufficient, especially when added to being hypo.  Ranges for these are as questionable as ranges for thyroid tests.  For example, B-12 range in this country starts at 200-something to 300-something.  In some parts of the world, the range begins at 500.  Some people who have PA have to have levels right up at the top of the range, or even over it, before their B-12 symptoms are relieved.
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Avatar universal
You can be tested for celiac (autoimmune gluten intolerance), but other conditions can lead to mal-absorption, too.  On your normal 180/88 dose, it seems that if you were absorbing properly, your FT4 should have been higher than 11% of range.  With almost 200 mcg going in, we'd expect your FT4 to have been higher than it was.

Vitamin D deficiency, you're right, is one that can mimic thyroid symptoms.  D is necessary both for the synthesis of thyroid hormones in the thyroid (not a concern for you) and must be present in sufficient quantity in cells for T3 go get into the nucleus and do its work. Iron/ferritin levels are in this same category.   Vitamin D deficiency is rampant in the temperate climates.

Vitamin B-12 deficiency can cause fatigue worse than hypo (I'm told).  I've read that its presence in cells is also important for T3 to get in, but I haven't seen this enough to confirm it.  Pernicious anemia, the inability to absorb B-12 through the gut is another autoimmune disease.  Once we have one, we are more vulnerable to others.

The enzyme that catalyzes the conversion of T4 to T3 is a selenium based enzyme.  So, selenium level is important.

When T3 can't get into cells, you can be hypothyroid on the cellular level, even with perfectly adequate serum T3/T4 levels.

It would be interesting to see your RT3 level.  Many endos think that RT3 is just slightly this side of witchcraft.  Others think that the ratio of FT3:RT3 is the best measurement we have at the moment of tissue thyroid levels.  Are you familiar with RT3?

Do you know what your B-12 levels was back when your doctor put you on a round of injectables?  The fact that the IV vitamins helped is indication that you might have been deficient.

Another test that I might include is magnesium because of the fibro connection.  

What have you been supplementing?    
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Avatar universal
I have been checking my pulse since I started Wilson's.  It has remained in the 90's which is what it has been for years.  I does seem unbelievable that I can take so much T3 and feel nothing at all.  Except for the fatigue, which isn't too bad, I have not noticed anything since beginning the protocol until a few days ago when my temp finally started to up a little.  Maybe I do have a leaky gut problem of some sort.  How could that be tested?

I have always done my best to take my thyroid meds on an empty stomach.  My labs have been fairly constant for the last 10 years or so.  It seems I need to take 180/88 to have normal labs.  I didn't really put together that some of what I think is fibromyalgia related might really be something else.  Can you give me an idea of what vitamins or minerals might be involved in mimicing a low thyroid?  Also, what else is involved in  either converting T4 into T3 or moving the T3 into the cells?  I have heard that vitamin D is involved but I don't know what else.  

I'm thinking that I will take a month or so off from Wilson's at the end of this cycle.  I want to see if my temp goes back down and I want to see what my labs look like in March.  I would like to go to my March appointment with my Endocrinologist with some questions about my T4 and T3 levels and what other tests could be done to maybe give us more information.

I will see my pain doc in two weeks and I would like to ask him about testing for the vitamin or mineral difficiencies as he would be a good resource for this.  A few years ago, he put me on a round of vitamin B12 injections - but I didn't notice any changes.  He  also gave me an IV of concentrated vitamins and minerals.  That did make a difference.  I had a boost of energy for a couple of weeks.  I'm guessig that a lot of the supplements I take don't get absorbed like they are supposed to.  If you could give me some specific vitamins and minerals to possibly test or at least ask about,  I could do some research before either of the appointments.  It's always better to go in prepared!   Thanks so much.
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Avatar universal
I'm assuming that the fatigue is due to the imbalance of FT3 and FT4 that you almost have to be in at this point with little to no T4 input for 75-90 days (if my math serves me).  At times of peak demand, you have very little T4 to fall back on.  SR T3 should keep your FT3 level fairly constant, but as you know, it's either used or neutralized very quickly.  So, you need some FT4 available for conversion.  Your FT4 was already very low before you started this, so I imagine it's almost non-existent now.  We know your thyroid isn't contributing any.

TSH causes no symptoms.  It's nothing but a messenger from your pituitary to your thyroid to tell it to make more hormone.  

I'm just surprised that you can tolerate 180 mcg of T3 without feeling hyper.  So, I was just wondering if your levels were always high.

What I notice about the last labs you posted is that your FT4 was really low...kind of surprising with a total of almost 200 mcg of T4 going in daily between your Armour and your Synthroid, not to mention quite a bit of T3.  Do you have any gut issues that you know of that could impede absorption?  Did you take your meds on an empty stomach and well away from other meds or supplements (3-4 hours)?

FT3 was really good...well up into the top third.

Have you had vitamin and mineral levels tested?

I just don't think you should feel that, if Wilson's doesn't work for you, there isn't anywhere else to go.  Those labs had a lot for room for improvement.  Vitamin and mineral deficiencies can mimic thyroid symptoms, and some vitamins and minerals have to be present in sufficient quantities in cells for T3 to get into the cell nucleus and do its work.

I don't blame your relatives for being a little nervous.  You're making me a little nervous as well!

Wilson's is a fairly extreme protocol.  The longer you stay on it and the higher dose of T3 you take, the more that can go wrong.  Don't feel this is your last hope.      
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Avatar universal
I think my doctor has had many patients's that he has tried the Wilson's protocol on.  I asked him.  Originally, I went to him because he is a pain specialist.    He has an excellent reputation for helping those with fibromyalgia.   I have been driving 150 miles roundtrip to see him once a month for the last 6 years.  However, he isn't my endocrinologist.  I see him 3 times a year and I decided I would tell him when I saw him next (March) what I was trying with the Wilson's.  I don't know what he will say but I do know he will listen and I think by then I will know something about where I stand with the whole thing, too.

I know this thing is controversial.  One reason I felt a little safer trying it is that my thyroid cannot be damaged  any further.  I am the guinea pig for my family because I am one of many who are interested in how this works out.  They are too nervous about trying it and I am the most desperate, I guess.  

I am on my 5th cycle.  My cycles have ranged from 12 days to about 17 days.  I have rested 3 days inbetween each.  Originally, I wasn't to go over 105 mcg.  My current cycle is the first time I have gone over 105 mcg.  I am now down to 90 mcg today and will be done with this cycle in 5 days.  Should I rest for a while or just 3 days?  I'm not sure anyone really knows for sure.  My doc says I'm in a gray area of medicine. I will not go any higher than 180 especially since I did get a response.  I think the idea is to take as little as possible each time.

I did read today that fatigue is a side effect of the protocol.  I am finding this to be true.   Wilson's advertizes on his website some kind of supplement to help with this.  Any thoughts on this?  Could the fatigue come from the TSH being suppressed to a really low level?  


I don't know what my labs were before I became hyperthyroid,   but my GP did test my FT3 and FT4 before I started on Cytomel and I assume they were ok or he would never have allowed me to go ahead and try the Cytomel.  
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Avatar universal
Has the doctor you're doing this with had lots of experience with Wilson's protocol?  I'm no expert, but I'm sure you know the protocol is fraught with controversy.  If it were me, I'd want a doctor who had done more than just read the doctors' manual.

How long has each of your cycles lasted?  How long do you rest in between?  I read that the maximum dose of T3 should be 75 mcg twice a day.  Is your doctor planning to let you increase above 180 mcg.

Do you remember or have records of how high your FT3 and FT4 levels before you started having hyper symptoms when you had Graves'?  Were your levels way off the charts?
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Avatar universal
I think my previous post didn't go through!  If it did, sorry for the repetition. I don't know if I have ever had my RT3 tested.  I can ask for it to be tested when I get my labs done in March.  Is there anything else that I should ask to be tested?  As for the Wilson's thing -I do not have any testing done between cycles.  I was told to rest for a couple of days before starting another cycle.  My doctor told me last week to think about resting for a month or so if I still have not seen any response.  Since I have seen a response (my temp is higher) I think I will start another cycle sooner.  13 years ago I asked my GP if I could try Cytomel for fibromyalgia.  I only took small doses but I did see an improvement in my symptoms.  There was a day that stands out.  I felt so good.  Lots of energy, no pain, and my mood was through the roof.  It lasted only a day.  I have always wondered if this is what "normal" is for most people.  Not long after this I was diagnosed with Graves and that ended my Cytomel experiment.  I feel I have come full circle with Wilson's.  I have to see if this will work for me.  If every day was like my one great day life would be so incredible.  If Wilson's doesn't work, I am back to where I have been - taking lots of supplements and meds to keep me comfortable.  The one thing I did do that has helped is to have all the mercury amalgams in my mouth removed about 1 1/2 years ago.  There were 11 so I got rid of a lot of poison.  It's been a slow change, but I am a little better in some respects.  I hope I continue to improve over time.  We'll see.  Again, thanks for your time and expert advise.  It means a lot to  me.
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Avatar universal
Sorry, that was a typo...I was THINKING 180, but the fingers didn't cooperate!  LOL

Just to be absolutely clear...just prior to those labs you were taking 180/88.  Is that correct?

Yes, the T3 in Armour, especially in 3 grains of it, is plenty to lower your TSH that much.  No, I don't think it suggests a pituitary issue at all.  TSH is a pituitary hormone, as you know.  It's only job is as messenger from your pituitary to your thyroid to tell it to produce more hormone.  TSH can be influenced by any number of factors besides thyroid hormone levels.

One of those factors is meds.  Why?  We don't know for sure, but it may have something to do with the fact that instead of hormones being produced and released slowly, on demand, we swallow a whopping heap of them all at once, and this might disturb TSH.  We see suppressed TSH from meds all the time; I don't think it's anything to worry about beyond learning to ignore it (and convincing your doctor to do the same).

Was your RT3 tested before you started Wilson's?  How long were you on each cycle?  Have you been monitoring levels after each cycle?  I was under the impression that more recent versions of Wilson's didn't use such massive doses of T3.  If you continue the Wilson's, what's the next step?  
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Avatar universal
Yes, the FT3 range should be 2.3-4.2. Also, my daily dose of armor thyroid is 180 mg, not 190.  The labs were done before I started the Wilson temp protocol, so I was still taking the same dose I've been on for months.  Would my TSH be that low from the T3 in just the armor?  Does this suggest a problem with my pituitary?  I don't know what to do. Should I quit the Wilson's protocol?  I can't imagine what my TSH must be now after taking all that T3!  Any suggestions?
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Avatar universal
How long had you been off 180 mcg of T3 and on 190 mg Armour/88 mcg Synthroid when those were drawn?

Your TSH is low, but that doesn't surprise me.  TSH is often suppressed once on meds, especially meds with a T3 content.  You've been on a lot of T3.

Is the reference range for your FT3 correct?  Should it be 2.3-4.2?

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Avatar universal
My latest labs are Free T3 3.8 [3.3-4.2] pg/mL; Free T4 0.99 [0.89-1.76] ng/dL; TSH, High Sensitivity L 0.089 [0.550-4.780] uIU/mL.  My TSH is low.
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Avatar universal
We often don't feel well just being "in normal range".  Some of us have to be higher in the range than others.  I can explain a lot more once you have some current labs to post.  Until then, it would just be guessing.
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Avatar universal
I looked into THR.  The symptoms don't really fit my situation.  However, when Graves disease started, I had most of the symptoms of THR.  Once I started treatment the symptoms disappeared.  Now it just seems as if I am hypothyroidism, although my blood says I'm normal.  
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Avatar universal
I have not tried THR.  I don't know what it is.  Could you please give me more information?
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Avatar universal
I'll look forward to seeing your labs.

Wow, that's a megadose of combined Armour and Synthroid.  Have you explored thyroid hormone resistance (THR)?  How long have you been on 180 mg/88 mcg?
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Avatar universal
I am taking a daily dose of 180 mg armor thyroid and 88 mcg sythroid.  The Wilson's temp protocol calls for timed released T3 doses that are increased by 15mcg per day up to a set dose and then back down by 15mcg per day until the dose reaches zero. This is supposed to reset my temp and hopefully make me feel much better.  The cycling isn't supposed to continue for more than a couple of months after which the body temp should remain normal.  Hopefully.  I am a 62 year old retired teacher.  I have struggled with migraines since I was 9 years old, depression since I was 14.  My fibromyalgia began in my early 20's and got much worse in my 40's.  Teaching through all this was difficult, but I loved my job and that kept me going.  My doctor suggested trying the Wilson's temp protocol as a way to possibly heal a lot of my symptoms of hypothyroidism. I agree it is a lot of T3, but until the last couple of days, they were doing nothing.  My heart rate has remained constant and I feel no symptoms of hyperthyroidism. Because of my Graves disease, I know those symptoms well, and would back off the dose immediately if I felt any of them.  I am keeping good records of my daily temps and dosages to give my doctor each month.  I have been sick most of my life.  This could be my best shot at getting well.  I do have one lab result for you.  My vitamin D was 18 about three years ago.  I was given injections to remedy this and I take a supplement daily.  My last two vitamin D tests were 50. I will get a copy of my most recent thyroid blood tests as soon as possible to pass on to you. Thanks.
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Avatar universal
So, you are now taking 90 mg of Armour and 88 mcg of Synthroid, correct?

105 mcg and 180 mcg of T3 are both HUGE doses.  T3 is at least 4 times more potent than T4, so that would be roughly equivalent to 420-720 mcg T4.  Are you doing this under a doctor's supervision?

I wouldn't even hazard a guess why your symptoms are getting worse without seeing labs.  What was your FT3:RT3 ratio before starting the protocol?
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Avatar universal
I had RAI and then had to repeat it about 4 months later.  I take 90 mg armor thyroid twice a day and 88 ug synthesis once a day.  I am currently trying the Wilson's temp syndrome protocol.  My temps have averaged 97.4 through 3 cycles where the highest amount of T3 was 105 ug.  I am now coming down from my 4th cycle; this time I went up to 180 ug.  My temp is now averaging 98.1.  My brain fog is much worse and my fatigue has increased.  Is it possible for my temp to normalize but my hypothyroidism symptoms become worse?  Does this mean I am over converting? Thanks so much for any help.  I will get lab results soon.
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Avatar universal
You could.  Please post the results of recent lab work with reference ranges.  Ranges vary lab to lab, so they have to come from your own lab report.  Just being in "normal" range is often not enough for us to feel well.

How much Armour and how much Synthroid do you take?

Did you have RAI?
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