# 47 y.o. Male - Confirmed Hashimoto's - Mayo Clinic - Long Journey



## AK907 (Aug 31, 2015)

Not sure where to start with this, I've posted to other boards before, but it has been a while. Rather than bore those folks who have seen it all before, I'll try to keep it as brief as possible, but my story needs to be heard only so that it can possibly help other males, and other people, who have Hashimotos. I'm going to chronicle my story by year so I can keep track. And for the record, I'm worse today than I was at the start. I'm still positive in that I can "null" this issue and move forward. I highly advise others not to give up. I'm a 47 year old male in spectacular shape. But in reality, on the outside, it's all glitter. On the inside however, well, that's a different story....and others must know my story. My only hope here is that just one person who knows about thyroid issues will see this...and say, I've had that, I know how to fix it. Because right now, I don't. And the doctors sure as hell don't seem to know.

6'1" 202lbs

*Spring 2006 *- I happen to live across the street from an internist who sent to Stanford Medical school. He has since retired due to a stroke a few years back, but he's doing good and seems to pulled through it fine. When we first met, we became friends immediately, great guy. After about 8 months, he recommended I come down to his office for a routine check-up. Had asked about whether I had been checked for the normal stuff people get checked out for, one being having my cholesterol checked. So I obliged and went in. He did the normal checks...a push here, a bend here, heartrate, diet, etc. Then he sent me off to the lab. The next week he called me from his office and said I needed to come in. So I went in and he said "your cholesterol is high". It was 249. He looked at me and said "yours shouldn't be that high given your athletic build and the shape you are in, how's your diet?" I said probably no different than most guys my age. Yes, I eat salads, chicken, pizza, red meat, fruit, drink coffee, soda, etc. He told me to clean up my diet some but nothing drastic and he recommended I go on Lipitor, 10mcg. So I took his advice, started taking the Lipitor. 8 weeks later he told me I had to come in and get labs to see where I was with cholesterol levels, so I did. Got a call the next week telling me I had to come back in. When he saw me, he told me my cholesterol hadn't moved and questioned whether I was actually taking the cholesterol. I said yes, routinely, every morning at 6:00AM and then off to the gym. Then he said he wanted to perform so other tests. So took more lab work and got a call early the next week. Told me to come in the next day, so I show up and he tells me that my cholesterol is so high because I have a thyroid problem, TSH = 38. No FT3 or FT4 labs done. Never once was Hashimoto's mentioned to me. Asked me if I was tired, run down, no motivation, low sex drive, etc. I said no to all of them. I did say that I might be a little tired due to having a family, work, life, but it didn't seem to be a problem really. He never really told me what the issue was, and I was more interested in how to fix it. He told me he wanted me on .025 of Levothyroxine. Explained that my body wasn't making enough of my own thyroid hormone and that I needed help now with the supplement of Levo. I said ok, got the script filled, and started taking it the next morning, no big deal. I probably didn't notice anything for about 6 weeks. But after six weeks, I noticed I did in fact have a bit more energy/spunk in my step. He wanted me back at 8 weeks after starting the dose so I went in. He said, still need more. This continued for roughly 18 months. My dose ended up at .175 Synthroid.

March 2008 - Parents live in Phoenix and since I have had asthma my entire life (although well controlled), my mom wanted me to come down to Mayo Clinic for a thorough checkup on my asthma. I currently had no problems though, but to satisfy mom and dad, I went. Since I was at Mayo Clinic, I figured what the hell, I'm gonna ask about this thyroid business. I had told my mom about my thyroid issues and she said "hogwash", you don't have an issue. Either way, I also scheduled an endo visit with a Dr. Whitaker at the Phoenix Mayo Clinic, figured it couldn't hurt to just get a second opinion. Went to Mayo, asthma check was fine, no issues. I then saw Dr. Whitaker. I told him I was there for a second opinion on my thyroid, I said I didn't really think I had a problem. Told him I never had any issues I know of before I was seen by my local doctor. He said fine, lets check you out and get your labs. Had another appt. to see him the next day to review labs. So I go into his office and he flat out says "you have a thyroid issue alright", you have Hashimoto's. Never even heard of that I told him. He said very common, and not to work. Said my labs for thyroid were perfect. S-TSH = 0.48 (.30 - 5.0), T4 Free = 1.08 (0.6 - 1.6), TPO = 592.1 (<35). Said my Hashimoto's was going pretty good pertaining to the high TPO. But he convinced me all was good. So I left there feeling good, thinking all was behind me.

Nov 2008 - Indigestion begins...no known reason. Still taking my Synthroid faithfully. Everything seems normal though, still feel good.

Feb 2009 - Indigestion with just about anything I eat, bowel movements just not as "clean" leaving the body. Not constipated, but not like I would say normal.

August 2009 - Same as Feb. 2009, except going to the bathroom is becoming more annoying, difficult. Gained a few pounds...my diet isn't the best.

March 2010 - Start getting the "shakes" for roughly 15 minutes and then it goes away. Can't fall asleep easily, a bit anxious.

July 2010 - Agitated, irritated at any little thing, appetite not very well, but still living life.

Sept 2010 - Stomach upset, cramps, heart pounding, shortness of breath for short stints, short cough like something in my throat, appetite sucks, shakes more often now. Maliase feelings...just not feeling right...lightheaded....panicky.....ok, something's not right. Time to go back to Mayo...I know my body. All through this I've continued to work out and try to eat right.

Oct 11, 2010 Mayo Clinic Visit - Full physical was done based on all my symptoms. My worst symptom was the daily indigestion...it was un-relenting. Endoscopy, EKG, breathing tests, full abdominal MRI & CT Scan. I also mention at this time that my ears were ringing a bit...but it was hard to explain...the best way I described it was that my head was ringing...not my ears, but it sounded like my ears. Also had some sort of nasal congestion/sinus pressue that was with me all the time. Still on .175 Synthroid. Told my issue was not Synthroid related....but to test for allergies, they gave me the Synthroid .050 dosage which has no dyes....after six weeks, no difference. At that visit, my Free T4 was now at .82, TSH = 5.73, same ranges as above in my 2008 visit. TPO was not checked. So, based on those labs, I was bumped from 175mcg Synthroid to 200mcg. The endoscopy showed some severe corrosive esophagitis, and I was put on Protonix, 40mg that next day. It was a week of tests, etc. And those guys at Mayo are like a machine...I like that place...kind of. Within 48 hours of being on Protonix and a new dose of Synthroid I literally felt like I was 21 again, I felt so dam good! Had to go back in January 2011 for follow up appointment to have follow up endoscopy. So I left extremely happy, and literally felt so much better, from the Protonix and 100% eliminated digestion problems. Over the next couple of months things were going well. Then one night, out at a friends house drinking beer and having fun for once in a long time, I had this immediate dizzy spell/lightheaded/sick feeling. It lasted about 15 minutes. I was drinking and chalked it up to too much beer...which was probably right. I don't drink much at all, and thought it would pass. I also got those same shakes I had early on, but not as severe. Few days later, I got the same thing again. Indigestion was no more though...going to the bathroom was normal. Workouts were good. But I was still "off" a little bit in my head.

Jan 2010 Follow Up visit Mayo Clinic - endoscopy looked great, continue taking the Protonix, don't stop it. Saw Dr. Whitaker. Asked if I was having any odd symptoms. I said actually I was...little bit of dizziness, nausea, shaky. He said "you should be...you're on too much medication, need to drop back to .175 and get tested again in 8 weeks up where I live." TSH = .02. Said I would be better off closer to the top end of the range than the lower end of the TSH range. Everything I've read says to try to get to lower end of TSH range. So left Phoenix feeling good, and now back on 175 Synthroid.

April 2011 - Had blood work done by local doctor, not my normal internist...he had the stroke I mentioned above. He retired. Local doctor said my lab results showed TSH = .16, and at that time he said "you could make a case for taking a bit less of Synthroid, but if I felt good, no issues, to continue taking my current dose." Kept taking Synthroid 175mcg.

May 2011 - Lightheaded/dizzy/nausea/sweaty/wired/can't sleep. Figured it would go away over time. It didn't.

May 29th 2011 - Can't see my local doc...out of town...so went to Urgent Care. Explained my story in a few minutes, said I know it has something to do with my meds or my thyroid...was sure of it. Took labs and said he would call me. I had to take off to Vegas for a conference. He called me while I was in Seattle airport. Said my TSH = .01, too much and to immediately start breaking my 175mcg in half and see my local doctor when I got back. Horrible trip to Vegas...my symptoms got worse. Unsettling, short of breath, etc.

June 2011 - Saw my new local internist who I couldn't see previously. Told him Urgent Care doc told me to break pills in half. He said get labs and I'll call you. TSH = 4.43, no FT3 or FT4 labs. Said I was still in range. Told him I wasn't feeling good...said he can't prove a false negative...my meds were fine at Synthroid 88mcg now. Got labs again in August and TSH = 4.43. Not feeling well.

November 2011 - Big Thanksgiving dinner.....immediately felt very sick and had to go lay down upstairs....food was just sitting in my stomach......had to force myself to get sick. Head throbbing...ears blaring....blurry eyes....racing heart. Had to make trip out of town with my son for sports...8 hour drive away from home. Worst three days of my life...but I hid it all from my son, but I was suffering...racing heart....105-110Bpm. When I got back from the trip, I felt like I had the flu times 100! Fever of 103-105 for 24 hours. No energy.....can barely move. Still on Synthroid 88.

My chronicling is over for my story. What I can tell you is that I have never fully recovered. I've had labs out my a$$ and I feel like I have researched enough to know that I still have a problem and the October 2010 visit to Mayo Clinic and subsequent period of feeling good was only short lived. I'm not crazy, but my head feels like it's crazy. What I can truly say is that my labs clearly show where I felt good at...and that is towards the lower end of the range. I felt fantastic at TSH of .16. I've been trying to work my back up in dosage with new doctors, but anytime I'm anywhere within the range, they say all good. However, my issue isn't obtaining meds, my issue is that I can't seem to get past a certain dose. It's like the more I take, the worse I feel. It's a no win situation. My anti-bodies are always high...in the 500's. I've had a scan of my thyroid and it clearly shows my thyroid is being destroyed slowly. I've read where Hashimotos' can take up to a year or so to completely do all the damage it is going to do and pretty much be dead. Is there an adjustment period to this meds. I've tried all the meds too.....Synthroid, Armour, Tirosint, generic Levo, Nature-Throid. I know that when I have too much T3, I get these pounding headaches, heart beats fast, etc. I just battle through this day by day with no end in sight. I've also heard that Hashi's can last for years. Whats the answer? Get my thyroid removed? Is that really going to solve anything if I can't seem to take any thyroid meds? I've tried stopping meds in the past (not recently) and I can tell you that if I stop, after about 14 days I start to feel better. How about acne? I'm 47, and it seems the higher the dose that I'm on, I get some cystic acne...which are basically boils under the skin. Not a lot, but something I notice because that is not normal for me. My skin isn't super dry, however, I seem to itch in one same spot....exact spot, at least 4 or 5 times daily. My appetite is crap, and I only crave junk.....nothing healthy. That's not me. I'm so tired in the mornings, and have a hard time getting out of bed. For people with Hashimoto's, do some people just do better being at the top end of the range? I actually feel like I might do better outside the range, but it is so hard to say. I've read where all Hashi's people are hypo, but not all hypo people are Hashis. Is this statement true? Below is my last labs I've had....I was on 137 Synthroid at that time. Based on these labs and how I felt, I was bumped to Synthroid 150. I've had the adrenal tests as well, both blood, urine, and saliva. Docs have told me they are all normal. I'm currently taking Selenium, Zinc and a daily vitamin. I'm looking for any amount of advice. Doesn't necessarily I'm going to make a snap decision and follow it, but just want to hear some other members who may be going through what I go through. I still work out daily. Still battle through this crap and try to live my life. But I feel like I'm getting just a bit worse each day. I really want to just go to Synthroid 175mcg, but based on my past experiences, I feel like this is going to make me worse.

*July 27, 2015 Labs*

FT4 = 1.0 (range = 0.8 - 1.8)

T4 Total = 5.8 (range = 4.5 - 12.0)

TSH = 3.11 (range = .40 -4.5)

FT3 = 2.4 (range = 2.3 - 4.2)

**Every lab I have taken uses the same ranges. I've never taken labs that have used different ranges. I usually get my labs at Quest Diagnostics, but even the ones I have had at Mayo use the ranges I put above.


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## Octavia (Aug 1, 2011)

Hi, and welcome. Your situation stinks, for sure.

Could you please edit your post to include your lab's ranges for the results/tests you posted?

I suspect it's your antibodies that are screwing with your body and that's why you still feel bad...but I'll leave it to the people here who have more firsthand knowledge of Hashimoto's to share their experiences.


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## Lovlkn (Dec 20, 2009)

Welcome to the board!

First problem I see is you have not consistently had proper lab tests done. TSH is more of a diagnostic test and can lag up to 6 weeks from where actual thyroid hormone function is. TSH should never - ever be used for dose adjustments.

Free T-4 and Free T-3 are the best tests to run as a follow up to the medications you are taking. Goal for both of these tests is to be in the 1/2-3/4 of range. I give that range because it depends on when you have taken your last replacement med dosage and you should never take your dose prior to a lab draw for best results. A TSH if 1 is common for those that do run TSH and have Free's in the ranges stated above.

Running the FT-3 along with a FT-4 and using the results to adjust your dosage from is the only way you will begin to feel better - I can pretty much guarantee this. High cholesterol is from being hypo in many cases. I know my cholesterol goes high when my Free's are not in the ranges I mentioned.

TPO is an antibody that shows inflammation of the thyroid gland - yours is fairly inflamed. Do you by chance have a copy of the ultrasound report? It will likely take much longer than 1 year as you stated for your thyroid to die off. My TPO was in the 2000 range and still spilling out all sorts of extra hormones into my system, which is likely your case as well. Having high TPO is likely the reason you cannot stabilize on thyroid replacement medications. Manufacturer recommendation for replacement med's is 1.7 mcg per kilogram of weight, although that can vary it is a good starting point. 175-200mcg is a fairly hefty dose. Do you take it at least 1 hour away from food with a full 8oz of water? 202lbs = 91.6257 x 1.7 =156 Since you are so active you may be burning more which is why you require a higher dose. Mind you, this 1.7 is for someone without a thyroid gland.

Have you ever had a thyroglobulin antibody test run?

Please be sure to post your lab ranges next to your lab results as every lab uses different ranges.


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## AK907 (Aug 31, 2015)

I've edited my original post at the bottom, you will see my last labs along with ranges next to them. Everywhere I read, people are tired, have brain fog, etc. Well, I do seem to have the brain fog, but to me, it feels pharmaceutical. I take my meds between 5:30AM and 6:15AM. Somewhere in that window. I take it with a large glass of water mixed with orange flavored Emergen-C. I do have about a cup and a half of coffee with cream and equal after that. If someone believes the coffee should be nixed, no problem, I'm not really attached to it, and it doesn't seem to do much for me anyways. Is it a problem that I don't take them at exactly 5:30AM each day? Below are some of my most common symptoms.

I don't have my ultrasound scan handy but can update this post tomorrow. Radiologist definitely stated that there was destruction, etc. But I can be more specific once I get the report out and provide info from it. My neck has never been sore, I have no nodules to speak of, I can remember that from the report. Neck is never warm to the touch like I've read in other posts. No trouble swallowing.

1. Head ringing

2. Bowel movements are very, very loose...basically diarrhea most of the time. I go to the bathroom 3-4 times a day, most days. Seems since I have increased from 137 Synthroid to 150 Synthroid, it has gotten worse.

3. I'm tired in the mornings, but wide awake and feeling better in the evening. No denying that one at all. It's almost like I wake up, take my meds, and then roughly two hours later my "pharmaceutical high" kicks off and seems to last all day until mid to late evening. I'm writing this now with a much clearer head.

4. Typically, my workouts come with what I think is an over abundance of sweat....however, I do seem to work out hard.

5. Blurry eyes as my med doses increase.

6. Bloodshot eyes...or red eyes a lot...one eye has a small bump on the white part of the eye just next to the colored part. some days it seems normal. Other days it gets severely bloodshot.

7. Cold hands...or clamy hands. Not sweaty, but just cold...however, later in the day they warm up to normal temps.

8. Temp is always around 97.5. But later in the day it will jump to 98.7-98.9, which isn't really a fever, but it shouldn't be that way I don't believe. Early in the day I feel chilled, but then out of the blue, I might start lightly sweating.

9. Fidgety at times but lack of motivation

10. Appetite not great at times, and then I feel like I haven't eaten in days and can literally eat forever.

Why would a Mayo Clinic endo tell me that I would be better with TSH at higher end of the range? That seems to contradict everything I've read online where most people do better with TSH of 1 or less? I've clearly stated though above that when my TSH was .16 at one time, I felt great. However, I don't have those labs and not sure I could get them.

If I'm going to the doctors and going to get labs, can someone tell me EXACTLY what labs I need to ask for?

FT3

FT4

TSH

TPO

Lastly, can someone please give me a quick yes or no on the whole gluten and dairy subject? I don't want to disrespect anyone else's opinion, and I do understand that everyone is a bit different. But to me, it seems like foolish talk. But at this point, I'd gladly call myself the king's fool if I knew it actually worked for me. I think those that have replied already and look forward to more response. I definitely need some help. It's funny, when doctors say it's all in your head. However, in my case, that is exactly what it is literally.....if I could escape this constant head ringing and some sort of dementia feeling at times, the rest of me would be ok. Or I surely wouldn't complain, but this is constant. Never stops. I wake up and it's there. Groundhog day!

I would take plain old tiredness and sluggishness over whatever is happening with me right now. I too believe the anti-bodies are kicking things off. This may be why at times I feel good energy and wired for short periods of time, and then I drop back off to current status. But I also feel like if I were never given thyroid meds to begin with, I'd be way better off today, but I do realize I can't go back. Although I'm not going to do it, I feel like I could stop meds today or drastically decrease and be better than I am.


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## Andros (Aug 26, 2009)

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/
(Copy and paste into your browser)

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Welcome to the Board. It looks like to me that you are in dire need of exogenous T3 supplementation. Either Armour and nothing else or Cytomel added to your Synthroid and your dose of Synthroid would be lowered.

Sadly, lab ranges are not universal so to err on the side of caution, we always ask.


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## Lovlkn (Dec 20, 2009)

Emergen-C is more than C and actually more like a multi vitamin supercharged with Vitamin C. You should consider taking your Synthroid with a full glass of water and wait at least 30 minutes to 1 hour before ingesting anything. Emergen-C also does contain 50mg of calcium which needs to be avoided 4 hours either side of your replacement medication.

I used to take my coffee with cream and do it right after - not sure if the small amount of cream is enough to affect.

As far as the comment to a higher TSH - well, that must be written somewhere in the doctor training manual because I just ran across office notes of my endo where she states she spent alot of time explaining the "importance of TSH to me". There are doctors out there who do dose by FT-4 and FT-3, you just need to look for them. I live not too far from Duke and I hear all the stories of the Almighty Duke and honestly, it's just a hospital as is the Mayo Clinic. Yes, they are also research hospitals and will definitely run every test under the sun to get to the bottom of your issues, but in your case they are treating you by some reference in a book that in my opinion is somewhat out dated. There are good doctors and bad doctors and you just need to keep looking until you find one who will treat you properly.


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## joplin1975 (Jul 21, 2011)

Re: gluten and dairy.

Neither bothered me when I had my thyroid (and had full blown Hashi's) and neither bother me now, in my life without a thyroid.

Does that mean going gluten- and dairy-free is all a bunch of hooey? Nope. Some people do have food sensitivities and for them, its critically important.

My thinking regarding anything thyroid-related is that if someone claims you HAVE to be on one particular medication or that you HAVE to follow one particular diet, they don't know what they are talking about. It's all about finding what is right for you and your body. None of us are identical.


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## jenny v (May 6, 2012)

Definitely nix the Emergen-C with your meds, it can interfere with absorption. You want to avoid any supplements with calcium and iron for at least 4 hours after taking your meds.

I have Hashi's and in the final stages (for me, right before my thyroid was removed), it was like a roller coaster. One day I'd feel hyper, the next I'd feel hypo. My doc said that as the thyroid was being attacked and basically dying off, it would have periods where it would try to fight back and dump more hormones into my system. So some days I would just have hormones from the meds in my body and then other days I'd have the meds and then a bunch of extra natural hormones when my thyroid tried to kick in again. It's very hard to regulate.


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## AK907 (Aug 31, 2015)

I currently see a PA, not a doctor. However, she is very willing to treat me based on symptoms and seems to think that is best. However, she doesn't seem to listen to me when I explain my symptoms. But, I'm getting fresh labs tomorrow, and will not be taking my replacement meds before the test. Any experience/advice on when I should have the labs drawn? Early morning, mid-day? I've got to believe my labs will be better than what they were last time, however, I feel worse. It's almost like I'm pouring gasoline on a fire by taking these meds. Seems that when I take more of them, somehow the Hashimoto's condition detects this and sends out more anti-bodies to attack the thyroid, except they don't know that hormone isn't coming from the thyroid, they are being supplemented. Any clues or ideas as to why when I take more of this Synthroid that I get looser stools? I know that is a sign of hyper, but can it also be a sign of being hypo? Blurry eyes?


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## Octavia (Aug 1, 2011)

I always get my labs drawn early in the morning before I take any drugs. Whatever you do, be consistent into the future.

Have you ever tried a thyroid drug other than Synthroid? Sometimes the fillers don't agree with certain patients.


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## AK907 (Aug 31, 2015)

I have received fresh labs and have posted them below along with reference ranges. At the current moment, I can't seem to get rid of the fog, am a bit tired, and I have a groggy sinus pressure headache along with full ears and ringing. My appetite is good, not great. I have had some fairly loose stools for a while now. This is not uncommon at all. I feel at times, the more of the medicine I take the worse I feel. Is there some sort of adjustment period to this? These were done on 9/2/2015.

T3 Total = 88ng/dL (76-181)

T4 Free = 1.1 ng/dL (0.8-1.8)

T4 Total = 6.2 mcg/dL (4.5 - 12.0)

TSH = 2.42 (.40 - 4.50)

T3 Free = 2.8 pg/mL (2.3 - 4.2)

Reverse T3 = 16 ng/dL (8-25)

I've never quite understood the whole Reverse T3 issue, but mine looks to be in range. Would appreciate if someone could possibly interpret these for me, possible opinion.


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## Andros (Aug 26, 2009)

rT3
http://thyroid-rt3.com/whatis.htm
(Copy and paste into your browser)

You must feel awful! You have very little active hormone which is FREE T3. You simply must find a doctor to correct this problem for you. I trust you read the links I provided in a previous post?

Info on rT3 above.............

Has your doctor ordered you an ultra-sound of your thyroid?


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## AK907 (Aug 31, 2015)

I have attached my scan which took place on Sept. 5th, 2014. I attached the file.


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## AK907 (Aug 31, 2015)

I have been on Synthroid 150 and about 8-9 days ago, I switched (on my own) to generic Levo 150 dose. I can say I might feel a bit better, but I for sure do not have near the loose stools I had when I was on Synthroid. Seemed on Synthroid, everytime I had a bowel movement, it was very loose and watery. I know this is graphic, but it sure does seem that at least for me, Synthroid could potentially be the cause. Last 3-4 days, I would say I am back to normal, or close to normal anyways. Don't know if that is coincidence or possibly not converting the T4 to T3 correctly on the generic Levo, and therefore becoming more hypo and slowly developing constipation, etc. Or, it truly was the Synthroid causing the loose stools. Any thoughts?


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## joplin1975 (Jul 21, 2011)

Whenever I change doses, I get loose bowel movements and am gassy. It generally lasts about two weeks.

It's entirely possible that there was a filler in synthroid yay didn't agree with you. It's not likely due to any conversion issues, since you are essentially taking the same medication (it's just the inactive ingredients that are different).

My guess, however, is that you are adjusting to the medication and the improvement with switch in brands was just a coincidence.


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## AK907 (Aug 31, 2015)

How is it deemed that my Free T3 is low, when the labs show that I am in range? I'm not tired really at all. If anything, if I were betting money, I feel like I am over-medicated.


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## AK907 (Aug 31, 2015)

Andros, anytime I copy and paste your link into a new browser window, it simply brings me to a page with what look to be thyroid links, but they seem to be all ads.


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