# intolerant of my thyroid meds. please advise!



## witty4 (Mar 3, 2012)

Hello all,
I will try and keep my story brief... was diagnosed w/ Hash. hypothyr. in 1997
since then was on .75 synthroid w/ no problems what so ever! This June, I started noticing that my synthroid was making me quite ill. debilitating ill. felt very, very "hyper" and had numerous symptoms. when i would go off the synthroid for 1-2 weeks, i felt better than i had in years. have been to my GP dr. and 3 different endo's since. NO ONE BELIEVES ME! they tried me on Levox. and then Armour thyroid. I was told these are the only other 2 options. Same issues w/ Levox. Armour thyroid (30 mg dosage once/day) actually put me in the hospital. Since i've taken medication on and off since June, my TSH is now at 33. My T3 and T4 have remained normal. Armour actually made me SO VERY hyper that I was hospitalized because my heart would not settle down and my pulse was so high. My latest dr. wanted to INCREASE my armour since my TSH was at 33 and told me it is impossible to be so sensitive to thyroid medication. I told him that if I take more Armour- I will die. It seems that my body acts VERY "hyper" while on medication, very, very sensitive.... yet I am clearly "hypo". What do you do when your body can no longer tolerate your thyroid medication? yet you need it to live?
My morning adrenal tests have all come back normal. PLEASE please help! I have yet to see a doctor who believes me or takes me seriously. They all tell me that what I am experiencing is impossible. I'm desperate!


----------



## Gwen1 (Sep 3, 2011)

I don't see why a doctor wouldn't investigate your symptoms of fast pulse/high heartrate. After all, they are doctors and that's why we go to them. Do these doctors know you went to the ER for these symptoms?

Perhaps your TSH is high from being on and off thyroid medication. Maybe you just needed a decrease from the 75 mcg. If you are in your mid-forties to 50's, you may need to decrease as hormones and age play a part in how much thyroid our body needs. Just some thoughts. I'm not a forum moderator, just another forum member.


----------



## Andros (Aug 26, 2009)

witty4 said:


> Hello all,
> I will try and keep my story brief... was diagnosed w/ Hash. hypothyr. in 1997
> since then was on .75 synthroid w/ no problems what so ever! This June, I started noticing that my synthroid was making me quite ill. debilitating ill. felt very, very "hyper" and had numerous symptoms. when i would go off the synthroid for 1-2 weeks, i felt better than i had in years. have been to my GP dr. and 3 different endo's since. NO ONE BELIEVES ME! they tried me on Levox. and then Armour thyroid. I was told these are the only other 2 options. Same issues w/ Levox. Armour thyroid (30 mg dosage once/day) actually put me in the hospital. Since i've taken medication on and off since June, my TSH is now at 33. My T3 and T4 have remained normal. Armour actually made me SO VERY hyper that I was hospitalized because my heart would not settle down and my pulse was so high. My latest dr. wanted to INCREASE my armour since my TSH was at 33 and told me it is impossible to be so sensitive to thyroid medication. I told him that if I take more Armour- I will die. It seems that my body acts VERY "hyper" while on medication, very, very sensitive.... yet I am clearly "hypo". What do you do when your body can no longer tolerate your thyroid medication? yet you need it to live?
> My morning adrenal tests have all come back normal. PLEASE please help! I have yet to see a doctor who believes me or takes me seriously. They all tell me that what I am experiencing is impossible. I'm desperate!


Instead of looking at the TSH, your doctors should be running the FREE T3 and the FREE T4 lab tests (not T3 and T4 which are totals.)

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.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

Also, you might have antibodies to the TSH.

whereas, the blocking
TSHRAbs cause hypothyroidism in some patients with autoimmune hypothyroidism
and are the cause of transient neonatal hypothyroidism. Measuring etc., etc..
http://jkms.org/Synapse/Data/PDFData/0063JKMS/jkms-17-293.pdf

Also, if you have not had any of the tests below, they truly should be done.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

At this point, I am not sure whether you are hypo or hyper but the above will sort it out. Insist on the TSI.

We also see this type of behaviour w/ the TSH and your hyper reaction when cancer is present in the thyroid so please insist on an ultra-sound.

Welcome to the board!


----------



## witty4 (Mar 3, 2012)

thank you so much for responding.

I did have a TSI run by the 3rd endo. that I saw. My TSI level was 66 which he told me was "normal" and NOT a sign of any graves disease or "hyper".
My T4 free was normal
My t3 total was also normal.

I did have demand an ultrasound while in the hospital (after much arguing that it would be a waste of time) and the ultrasound was completely normal. NO sign of any nodules or cancer.

An antibody test has NOT been run.

Also while in the hospital, had a cardio workup since my heart was acting so wildly, heart is fine.

I can't believe I have seen 3 endo's in my area and a fourth while in the hospital and no one has run any of these tests you are talking about. I tried to get into the Cleve. Clinic to see an endo, but the waiting list is 12-18 months out.

I am currently on only 15 mg of Armour, and my heart rate while sitting is high 80's low 90's and I'm feeling very "hyper". Yet my TSH level is 33!

Any other suggestions????
Thank you


----------



## Andros (Aug 26, 2009)

witty4 said:


> thank you so much for responding.
> 
> I did have a TSI run by the 3rd endo. that I saw. My TSI level was 66 which he told me was "normal" and NOT a sign of any graves disease or "hyper".
> My T4 free was normal
> ...


It would be good if you can get copies of your most recent labs and post the results and the ranges. Normal is not always normal.

Case in point is the TSI. You should not have any...........period.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html


----------



## McKenna (Jun 23, 2010)

You have two threads going and I replied to your other one.



> I am currently on only 15 mg of Armour, and my heart rate while sitting is high 80's low 90's and I'm feeling very "hyper".


Your resting heart rate, according to different sites online, is not overly high.
http://www.mayoclinic.com/health/heart-rate/AN01906
http://www.webmd.com/heart-disease/pulse-measurement?page=2
http://www.nlm.nih.gov/medlineplus/ency/article/003399.htm

Perhaps you are experiencing heart palps, which are making you feel like your heart is beating very fast? Hypothyroid can create heart palps.
http://www.stopthethyroidmadness.com/long-and-pathetic/
As I replied on your other thread, "hyper" symptoms can be felt when someone is hypothyroid.


----------



## Lovlkn (Dec 20, 2009)

Witty4,



> was diagnosed w/ Hash. hypothyr. in 1997


Free T-4 and Free T-3 are good starting points along with antibodies testing.

You should have lab's every 6 weeks until you stabilize. Never ever dose off of TSH - you need to dose off the Free T-4 and Free T-3 tests to dial in the proper dose.

If you continue to need medication changes to remain stable then you likely have hypo and hyper antibodies battling it out in your system.

Insist that the proper tests be run - be firm and don't go to a doctor who will not run those labs for you.


----------



## witty4 (Mar 3, 2012)

Well,

it seems that every endo I've seen doses completely off of my TSH readings and those readings only. so w/ a TSH of 33 , they are all say I'm "hypo" even though my symptoms are screaming "hyper" and like I said T3 and T4 are within normal range.

Know nothing about TSI and that it is not supposed to be in blood at all. Just took endo. #3 word for it when he said that a reading of 66 was normal. I asked him what the range was and he stated that anything less that 140 was considered normal.

I know what my usual pulse is because I have a history of high blood pressure and monitor this daily w/ my blood pressure machine. For me to have a pulse (and not just palpitations- it's my pulse) in the 90's is very high. My usual pulse while sitting runs in the 70's to high 60's.

you mentioned hyper and hypo antibodies "battling it out". how do I get a dr. to run these test when they are all so focused on my high TSH?

Funny thing is.... when I was diagnosed initially, my THS was 26 and I felt so very fatigued I couldn't make it through the day without a long nap and I still felt like crap. Now with a supposed TSH of 33, I feel great (when I am NOT taking the meds) and don't feel hypo at all like I did in 1997.

what antibody tests are you referring to???

I am in mid 40's. Endo. #1 kept telling me that I was NOT reacting to thyroid medication, but just in "menopause". I kept telling her I was not in menopause. Finally, after visit #3 with this doctor, she ran some hormone tests and sure enough, these blood tests proved that I was not in menopause. That is when she told me she didn't know what to do with me at this point since what I was describing was "impossible". Also, I kept telling her that my "hyper" symptoms would go away when I stopped taking my thyroid meds. and I would feel great. I don't think that menopause has an "on" "off" switch that just so happens to coordinate with when I take my thyroid meds.


----------



## witty4 (Mar 3, 2012)

Sorry, one more question.
many of you mention T3 and T4 tests.

Is a T3 test the same or different than a FREE T3? and T4 and FREE T4 are these the same or different tests???

Sorry- No one has ever explained this to me. Is one better than the other (if there is a difference)


----------



## McKenna (Jun 23, 2010)

witty4 said:


> Well,
> 
> it seems that every endo I've seen doses completely off of my TSH readings and those readings only. so w/ a TSH of 33 , they are all say I'm "hypo" even though my symptoms are screaming "hyper" and like I said T3 and T4 are within normal range.


I grabbed your labs from your other thread. (below) I just wanted to comment that your T3 and T4 are scraping the bottom of the barrel. They're technically within range, but they are very low. Most people feel best with labs around mid-range and above.

TSH is a pituitary hormone which can be helpful in diagnosing thyroid issues, but Free T3 and Free T4 are are the actual thyroid hormone levels.



witty4 said:


> Hello,
> Thank you to those who have responded.
> 
> My TSH was 30.13 with a range of .40-4.70
> ...


Have you had a chance to look at the list of symptoms from the stop the thyroid madness site? Some of your hyper feeling symptoms that you listed on your other thread are also on the hypo list.

Are you currently taking any thyroid replacement?

I'm certainly not a doctor but I just wanted to share some info. :winking0014:


----------



## witty4 (Mar 3, 2012)

I HAVE been to the Stop the Thyroid Madness site... many times.

curious to see what symptoms you think I have that are on the hypo list...because I reread the list and I actually have the opposite of most of those. NOt sure what you mean or what I am missing. My symptoms are mostly "hyper".

when you mentioned that my T3 and T4 levels are on the lower side... this meaning that I am showing "hypo" by this?

For so many years I had absolutely no problems with synthroid, so I feel so uneducated about all of this. ughgh!


----------



## McKenna (Jun 23, 2010)

I'm not challanging you on your symptoms and I believe you in what you are saying you are feeling. I felt a lot of the same things when I was hypo but I also had high TSI and was diagnosed with Hashitoxicosis.

From your other thread:


witty4 said:


> my symptoms are long and problematic. dibilitating really. a lot of hear issues- high pulse, racing heart with palpitations, on synthroid my heart actually "quivers" or "flutters", irregular heartbeat, menstrual irregularities, fatigue but "wired" feeling, feeling like I'm going to jump out of my skin, hot or heat intolerance, insomnia, frequent loose stools, chest tightness and pain, shortness of breath.... many of my symptoms are the same as being "hyper" yet I'm not according to the bloodwork.





> when you mentioned that my T3 and T4 levels are on the lower side... this meaning that I am showing "hypo" by this?


Yes. Your actual thyroid hormone levels are showing that you do not have enough. However, if you have TSI present you can have transient periods of hyperthyroid where your levels rise. nasdaqphil, the site owner has information on hashitoxicosis, and you can find more info by searching online:
http://elaine-moore.suite101.com/hashitoxicosis-update-a121050

These are the tests, including antibody tests, that Andros had suggested


> TSI
> Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
> http://www.medicineonline.com/topics...bulin/TSI.html
> 
> TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.


----------



## Andros (Aug 26, 2009)

witty4 said:


> Well,
> 
> it seems that every endo I've seen doses completely off of my TSH readings and those readings only. so w/ a TSH of 33 , they are all say I'm "hypo" even though my symptoms are screaming "hyper" and like I said T3 and T4 are within normal range.
> 
> ...


Here is the list (you already had TSI so no need to repeat.)

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Also, in all this time, has any doctor run your FREE T4 and FREE T3???

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.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

http://www.thyroid-info.com/articles/freet3woliner.htm

Have you had an ultra-sound of the thyroid to make sure you don't have cancer which "sometimes" accounts for weird labs?

Given your age and the situation, I would scream bloody murder for an ultra-sound.


----------



## witty4 (Mar 3, 2012)

Oh my goodness! You are all so well informed. I am so grateful to all of you who took the time to post and try and help me.

Is there a difference between Free T4 and just a T4 test?

I did demand a thyroid ultrasound while I was in the hospital. Endo. #4 did not want me to do it... said it was a waste of time. My husband was with me and backed me up when I said that I was not leaving until one was done. The endo. just rolled his eyes, but did order one. NO signs of nodules, tumors, etc. My thyroid is just enlarged, but otherwise looked fine.

I had a T4 free done in Feb. which was 0.7 with a range of 0.8-1.8
and a T3 total (NOT a free T3) which as 84 with a range of 76-181

thank you!

and after doing much research, I DO think that I have hashitoxicosis... it's just a matter of getting someone to believe me and diagnose me. UGHGHGH


----------



## Andros (Aug 26, 2009)

witty4 said:


> Oh my goodness! You are all so well informed. I am so grateful to all of you who took the time to post and try and help me.
> 
> Is there a difference between Free T4 and just a T4 test?
> 
> ...


With that low FREE T4 in Feb., I would say there is something going on. And it it rare that a Total is helpful but in your case since T3 is Total 3, Free T3 and rT3 (reverse) combined and it is so low, yes. I am guessing that you are mostly exhausted. Are you?

Read Nasdaqphil's Special Report on Hashitoxicosis here........ http://www.thyroidboards.com/hashitoxicos


----------



## witty4 (Mar 3, 2012)

Surprisingly no, I am NOT exhausted.

I actually feel better OFF the thyroid meds, then I do ON them.

Strange, but true. On them,I feel very fatigued, my joints ache,my muscles feel very, very heavy, I'm short of breath... etc.

Like I said before, my TSH is 33, but I feel better than I did when initially diagnosed in 1997 when my TSH was 26. I was exhausted then and barely made it through a day.

Odd right?


----------



## Zugora (Feb 14, 2010)

HI Witty4,
I am also experiencing hyper/hypo-type sxs and I'm in the process of getting my adrenal levels tested via saliva test. I know my cortisol levels were very low about a year ago, and suspect that they still are. You might also want to revisit a possible adrenal issue. If cortisol levels aren't optimal, thyroid meds will just pool in the blood and not get to the cells. The best method to test cortisol levels is the 24 hour saliva test. A one time blood test in the morning doesn't assess cortisol function throughout the day which is normally high in the morning and low in the evening. To quote from http://jcem.endojournals.org/content/89/7/3345.full#R20

"salivary cortisol level is a valid indicator of the plasma free cortisol concentration (12, 17, 18, 19, 20). Cortisol circulating in the blood normally forms complexes with proteins. The major binding proteins are corticosteroid-binding globulin (CBG; or transcortin), which binds approximately 90% of cortisol, and albumin, which binds approximately 7% of cortisol (21). Plasma free cortisol diffuses freely through the acinar cells of salivary glands. Binding proteins are absent from saliva. Furthermore, salivary cortisol concentrations are independent of the salivary flow rate (22). There is a strong correlation between plasma free and salivary cortisol concentrations (19). *Measurement of salivary cortisol is, therefore, an accurate method to assess plasma free cortisol, the biological active form of circulating cortisol."*

However, still,many doctors will not run saliva tests, but you can either try to find one that does or order one yourself. If you go through Canary Club.com (a non-profit the works with ZRT labs), you can get a diurnal cortisol saliva test run for about $110.


----------



## jackie (Mar 12, 2012)

This thread interests me because I have been having a similar problem. It seemed to start in early December when I tried taking iodine for SIBO, another problem I have. I had what is called a bromide reaction, which I was able to quell by taking sea salt. But for the rest of the month I felt foggy and loggy much of the time--didn't make for the best holiday. In January I went to my DO, who ran blood tests and said my peroxidase antibodies were in normal range. That is the first time I'd gotten a result like that since I was diagnosed with Hashimoto's over 10 years ago. However, I realized that I had been taking selenium, and there are studies showing that it quashes thyroid antibodies. Sometime after that--can't remember exactly when--I began having episodes of what seemed like brain fog after taking my morning supplements. So I experimented to see if I could identify if one was causing the problem, and it turned out to be my thyroid. I take 1.75 grains of compounded T3/T4. I tried not taking it some days, and like you felt much better. But I had an appointment scheduled on March 19 with a new doctor who practices functional medicine so as it got closer to that date, I tried to take the thyroid so the tests would reflect my true status, which continued to cause brain fog most days. I also went off the selenium several weeks ago as I wanted to see what my antibody results would be. After this appointment, I went off my thyroid for several days at a time and always felt much better until about Day 3 when I would feel more tired and begin to worry that I should take a dose. Sometimes when I would take the dose after being off for so long, I wouldn't have the brain fog but other times I would. It is very confusing. Then in the past week I've had two episodes that sound similar to your hyper situations where I was not able to sleep, had more severe heart palpitations, felt very cold and had to put on more bed clothes, and felt quite a bit of anxiety along with upper body muscle tightness. It took hours for these symptoms to abate after which I would get about three hours of poor quality sleep. I am in the throes of such a reaction now having had a very bad night last night. The new doctor is out of town and doesn't have an appointment available to discuss my test results until April 10. But one of his office people e-mailed me the results. My antibodies are up again. This doctor did a microsomal antibody test, which is different from what I've had before. The level was 15.7 with a reference range of less than 5.6. My TSH had gone up significantly since January to 4.14 (range 0.27-4.20), and my Free T4 was 1.1 (range of 0.9-1.7). Reverse T3 was normal. I am at a loss as to what to do since I probably won't be able to talk with this doctor for over a week. Seems like when I resume thyroid, I have these horrible, scary nights. But it seems like I need it. Any thoughts? Has anyone tried the protocol outlined at www.drlwilson.com?


----------



## witty4 (Mar 3, 2012)

Well all.... I have done the salvia test and am awaiting the results.
I will let you know... fingers crossed that I find some answers.
I'm also going to see a "holistic" dr. who will hopefully NOT tell me that my symptoms are "impossible"!

I'll keep you posted, thanks again for all of your input!!!


----------



## Gwen1 (Sep 3, 2011)

> I am at a loss as to what to do since I probably won't be able to talk with this doctor for over a week. Seems like when I resume thyroid, I have these horrible, scary nights. But it seems like I need it. Any thoughts?


I think what you are experiencing is from the changing levels of thyroid hormone from starting and stopping your thyroid medication. 
And the reason why your TSH went up is because you stopped taking it.
You may have needed to decrease your dose, but you cannot just stop taking it altogether. What did your labs say on the 1.75 grains? 
These are just some thoughts as I was reading your post.


----------



## witty4 (Mar 3, 2012)

Update:
Thank you to all of you who took the time to try and help me. You were all very informative. Met w/ the "alternative" dr. today.

Seems I have NO progesterone whats so ever, so am starting a bioidentical progesterone cream. This can account for some of my symptoms, especially the insomnia, and will help w/ thyroid regulation. And my adrenals definitely need support. which is what I suspected long ago but traditional "western medicine" drs. wouldn't test me for. I will see him again in three months to see if the progesterone and adrenal support help things out.
At least he truly believes my when I'm speaking about my symptoms! Yay!!!


----------



## sjmjuly (Mar 23, 2012)

The progesterone will help. It makes me sleep like a baby.


----------

