# intolerant to all thyroid meds. advice please



## witty4

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!


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## coldthyroid

Well, I am beginning to wonder if I'm not having the same problem. I wish I could provide you an answer but there seem to be a lot of people out here who can help. There seem to be lots of different medications. I'd be curious to know what your symptoms are though concerning taking Synthroid. I take it too and I seem to get very ill from it. It seems based on my T3 and TSH, that I'm not getting quite enough. However, when I seem to up my dose, I actually feel very ill. I haven't been brave enough to not take it for two weeks because my symptoms may be coming from not having enough of it. My TSH is 4.27 and T3 at 3.0. Still within the normal range but I've had a few out here tell me my T3 needs to be in the upper range and TSH lower. I get incredible ear ringing, ear pressure, low grade headache, almost like I'm in a euphoria. I have a tingling in my left ear. Its almost like I have water deep inside my ears or a massive fluid build up. My appetite is horrible, on again, off again, etc. Just a feeling of the worst sick you can imagine. I'd take the flu over this any day!


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## lainey

I have heard of people who do not tolerate thyroid meds, yes.

There is a new liquid thyroid med called Tirosint that is supposed to be super hypoallergenic.

People have also used compounding pharmacies to custom produce thyroid meds depending on their specific allergies.

You are not completely out of options. You do however, need a doc that believes you and is willing to work with you to find something hopefully that works.


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## witty4

Forgot to mention that an ultrasound of my thyroid while in the hospital checked out fine. no nodules.
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.
I KNOW I need to see another dr. thing is... i've seen three endo's who tell me this is all impossible. actually one of them looked me straight in the eye and said..."I don't know what to do with you". Great- at least she was honest. Any other dr. in my area I try and get an appointment with, I have to wait 1 year. I will be dead in 1 year.


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## Gwen1

I was overmedicated recently and I can tell you those are hyper symptoms. Have you been on a steady dose? I also experienced those symptoms as my dose was lowered from being overmedicated. I finally leveled out pretty well by the 8 week mark and symptoms have lessened.

What are you free T4 and free T3 readings with ranges?


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## iroczinoz

Your morning Cortisol what was the value and range? There is a huge difference in the range and being on the low end is definitely not good when taking extra medication.

Have you had Iron, Ferritin levels checked?

Have you had RT3 tested?

Vitamin D3, B12, Iodine tested?

How are your morning temperatures?


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## witty4

Hello,
Thank you to those who have responded.

My TSH was 30.13 with a range of .40-4.70
My T4 free was 0.7 with a range of 0.8-1.8
My T3 was 84 with a range of 76-181
TSI (he was checking for graves disease along w/ Hashim.) was normal so no graves.
My 6:00 am cortisol was completely normal (70's I believe) with a range of 50-100 if I remember correctly or something there abouts. I just remember my number was right in the middle of what the doctor called "normal" range. Since my a.m. cortisol was "normal", they will do no further adrenal testing.
I called Cleveland Clinic to try and get in to see one of their drs. and the waiting list is 12-18 months.

B12 and Vit. D 3 has not been checked. No ferritin checked.
I have asked for these tests and was denied. The doctors have told me it would be a waste of money and time since what I am describing is impossible.
One doctor did ask me if I wanted to try an anti-depressent even though I have remained calm through all of this. I told him I was not depressed, just frustratd that no one will listen to me.

What is RT3?????

No one has checked my iodine or iron even though I was hospitalized with what one doctor in the ER called "thyroid storm". I have seen 3 endo's on my own and saw one while hospitalized for a total of 4. Like I said, one said, "I don't know what to do" while the other three are telling me that my symptoms are "impossible" since I am clearly "hypo" based on my TSH readings. Yet I was hospitalized because my heart was so "hyper" they couldn't get it to settle down in the ER. Also, I have explained my symptoms to all doctors though they tell me it is impossible. They are looking at my numbers and NOT LISTENING to me.
I have not taken any morning temps. Don't know about this. No one has mentioned it before.
PLEASE respond anyone!

Thank you!


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## Gwen1

Are you still taking you thyroid medication every day?


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## McKenna

Hi there,
A few things you might want to consider...

Hyper and hypo symptoms can cross over, meaning that you can feel what most would classify hyper feelings but actually be hypo, as your numbers indicate.

Thyroid movement (numbers changing) can cause symptoms.

TSI should not be present in any amount. Testing negative for Graves' doesn't mean you don't have TSI.

Have you looked into Hashitoxicosis? It is transient hyperthyroidism but present in Hashimoto's and given the name of hashitoxicosis.



> Armour actually made me SO VERY hyper that I was hospitalized because my heart would not settle down and my pulse was so high


What was your diagnosis when you were hospitalized? What treatment did they give you? And did you have a cardiac workup?


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## iroczinoz

witty4 said:


> Hello,
> Thank you to those who have responded.
> 
> My TSH was 30.13 with a range of .40-4.70
> My T4 free was 0.7 with a range of 0.8-1.8
> My T3 was 84 with a range of 76-181
> TSI (he was checking for graves disease along w/ Hashim.) was normal so no graves.
> My 6:00 am cortisol was completely normal (70's I believe) with a range of 50-100 if I remember correctly or something there abouts. I just remember my number was right in the middle of what the doctor called "normal" range. Since my a.m. cortisol was "normal", they will do no further adrenal testing.
> I called Cleveland Clinic to try and get in to see one of their drs. and the waiting list is 12-18 months.
> 
> B12 and Vit. D 3 has not been checked. No ferritin checked.
> I have asked for these tests and was denied. The doctors have told me it would be a waste of money and time since what I am describing is impossible.
> One doctor did ask me if I wanted to try an anti-depressent even though I have remained calm through all of this. I told him I was not depressed, just frustratd that no one will listen to me.
> 
> What is RT3?????
> 
> No one has checked my iodine or iron even though I was hospitalized with what one doctor in the ER called "thyroid storm". I have seen 3 endo's on my own and saw one while hospitalized for a total of 4. Like I said, one said, "I don't know what to do" while the other three are telling me that my symptoms are "impossible" since I am clearly "hypo" based on my TSH readings. Yet I was hospitalized because my heart was so "hyper" they couldn't get it to settle down in the ER. Also, I have explained my symptoms to all doctors though they tell me it is impossible. They are looking at my numbers and NOT LISTENING to me.
> I have not taken any morning temps. Don't know about this. No one has mentioned it before.
> PLEASE respond anyone!
> 
> Thank you!


This is crazy that no doctor of yours has checked iron and ferritin levels along with saturation levels.

I recommend seeing an open minded GP and ask him/her to run the tests.

you can read more about it here

www.stopthethyroidmadness.com/ferritin/

This could be causing your issues no doubt and I am shocked they have not done these tests. Even when you went to ER they did not run the tests far out.

2. your Ft4 levels are very low, Ft3 is also very low. You most definitely do need thyroid meds but if your Iron/Ferritin is shot you will see no improvement at all and quite possibly a worsened effect when taking Thyroid meds. Which is exactly what you are experiencing.

3. Rt3 is believed to block Ft3 from working, but since your ft4 is low and cortisol looks okay (well could be higher) this is probably doubtful to be an issue. But you could always ask to have it checked. I think Rt3 becomes a suspect issue when you have good ft4 levels and borderline ft3 levels or when thyroid meds don't seem to be working.

Something is definitely up and in your best interest you need to get your ferritin/iron checked.

Upon waking before getting out of bed take a temperature reading. monitor them for a week and keep note.

take temps like this and also at 4hr intervals throughout the day. Keep a note and then post them up.

I would probably ask to have cortisol checked again when you ask for your iron, vitamin d3,b12. Also ask for Dhea-s this will also show some insight into your adrenal glands.

Any issue with sleep apnea?

If a doctor says waste of money running these tests ask them to give you this in writing. Looks like you are surrounded by the wrong doctors, look elsewhere and get the tests done that you deserve.

Unfortunately a vast majority of doctors are not very good at all. It is just like every other trade, you get the few good qualified ones and the rest are pretty much useless but they have that piece of paper.

Good luck.


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## witty4

Thank you to all who are reaching out and trying to help me sort this out. You all seem so well informed.

While in the hospital for observation, I was on the cardio wing and yes, they ran several tests to check my heart out. It was fine. Saw several doctors (teaching hospital) who diagnosed me as experiencing "thyroid medication reaction" for my reason in the hospital. Then walked in endo. #4 that I've seen and told me I had a cardio problem despite all of the negative cardio tests that were just run to say otherwise.

I took 10 days off all meds after my hospital stint. I never, ever want to feel that ill again. I couldn't walk, could barely breath, and my heart felt like it would explode at any moment.

I am currently taking just 15 mg of Armour and I already feel so very "hyper" I can barely stand it. My heart rate while sitting is high 80's low 90's.

I have seen the same general practioner for 15 years. She was basically washed her hands of this situation saying "I'm not an expert in this field. Let an endo. handle it". I am looking for a new GP. Have an appt. with one in two weeks. God help me- I hope this person can run some more bloodwork or is willing to help me.

My TSI level was 66. Now you are all telling me there should be NO TSI in the blood. Yet endo #3 told me this was completely normal. I don't know what this means, what is TSI and where do I go from here?

While looking back at some old bloodwork, Vit b12 was run a few months ago and was slightly high. Again I was told not to worry about it.

Thank you in advance for any input!


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## I DClaire

I am seriously worried that I may never be able to take thyroid replacement drugs...and without a thyroid, I don't know how I'll survive.

In 1988, I had to have a total hysterectomy. My doctor assured me I'd just start taking hormone replacement and live happily ever after. I never could tolerate ANY estrogen replacement.

I've tried Synthroid and Armour - with each I started off doing relative well but later the Synthroid made me feel like I was wildly hyperthyroid and now the Armour doesn't feel like it is doing anything.

I'm supposed to have labs this coming Wednesday and I'm not exaggerating when I say I don't know where the energy is going to come from for me to get to the hospital.

There is not a test I haven't had (many multiple times) and my cardiologist swears my heart problems are thyroid induced.

My husband is wanting me to go back into the hospital. I dunno'. I'm not opposed to the idea but don't know if that's an option. I've been in bed this entire day - too tired to even get a shower and get dressed.


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## Octavia

I DClaire said:


> My husband is wanting me to go back into the hospital. I dunno'. I'm not opposed to the idea but don't know if that's an option. I've been in bed this entire day - too tired to even get a shower and get dressed.


What could they do for you in the hospital? And whatever it is, can it be done outside of the hospital? Not that I'm opposed to hospitals...I'm just wondering, if something more can be done, then gosh darnit, why isn't it being done NOW?

:hugs:


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## I DClaire

Octavia said:


> What could they do for you in the hospital? And whatever it is, can it be done outside of the hospital? Not that I'm opposed to hospitals...I'm just wondering, if something more can be done, then gosh darnit, why isn't it being done NOW?
> 
> :hugs:


Paul is convinced something else is wrong. I know he is beyond frustrated with me eternally feeling so tired. Last night I was so sick we almost went to the ER and I don't think it was related to my thyroid but we're just not getting anywhere. I keep bouncing from one doctor to the next but nobody seems to really be doing anything - I think they're all convinced my biggest problem is my thyroid medication and nobody is willing to do anything my endocrinologist isn't already trying.

To tell you the truth, I'm so worn down that pretty soon I'm not going to be able to meet doctors' appointments. I don't think I'd feel more exhausted if I weren't taking any thyroid replacement.

A couple of years ago my mother was having so many health problems and the doctor checked her into the hospital and ran every imaginable test. Here, you have to wait at least a couple of weeks to see any doctor then probably a month for most tests.


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## WildFlowerJo

Witty4, I am wondering if you have found a solution for your intolerance to thyroid meds?


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## Swimmer

I can't take synthroid or tirosint.

I'm curious, when you started on thyroid medication, what dose did you start off with? (for how long?)

Also, I've read somewhere that for some people, other issues need to be addressed first, that there can be an order.

(It is specifically stated that in hypothyroid, adrenal fatigue must be adderssed before low thyroid or else patient may decompensate and feel worse.)

But I'm not a doctor - just passing some of the info along. This particular doctor has all sorts of hormones tested, male & female hormones, checks DHEA levels and much much more.


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## Salva

I have the same problem...intolerant to thyroid medications.

Anyone have any answers as to how you may have resolved the problem. The least amount of medication puts me in a hyper stage.


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## Octavia

Salva, I've read stories here from people who reacted poorly right away, but stuck with it and their bodies adjusted to the meds. How long have you given for the different meds to be tolerated/?


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## Swimmer

My endocrinologist has started me on armour, he prefers it to taking nothing, since I am intolerant to tirosint and synthroid.

He started me at 15mg for two weeks, then up to 30 for two weeks... (That's what I'm doing now) and so on and so forth "as tolerated" until I get to 60, then go see him.

(This is a protocol on the armour site - if you read the regular protocol -- it starts off higher - but this is an alternative more careful approach that is mentioned in their dosing info.)

I also read that for people who can't take armour, for some reason, some can take "Nature Thyroid" -- that there's something different that makes it tolerable.

Perhaps starting at these low levels as well -- however, I have read, that you're not supposed to stay at the low levels (like 15 mg for too long) or that a hypothyroid state can be re-introduced so to speak.

Hope this helps


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## CA-Lynn

FWIW, many of us have multiple diseases and several autoimmune diseases. We have no choice but to take the meds available to us. And you know what? The body is a marvelous thing. It learns how to tolerate the med and let it work its magic.

Sometimes people just don't give meds a chance. They are not always quick fixes.


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## Salva

It is not for lack of giving my body a chance to tolerate the medicine. have tried for over six years to get my body to adjust to the medicine and it will not. I am toxic every day! My body refuses to adjust to the medicine. I become increasinlgy more toxic as the days go by. Those of you that become tolerant are blessed.

I have also tried starting at the smallest does and gradually increasing the medicine every three weeks, no luck either. Anyone have any suggestions as to what I can do. I have tried taking Synthorid (1/4 of a 50 mcg pill), Levoxel, compunded porcine (15 mg), over the counter porcine and they all make me toxic.


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## CA-Lynn

If all other causes have been ruled out, then you have a choice:

1. Deal with the effects of the meds, or

2. Go off the meds and see what those effects will be.

My gut tells me that all that you've listed is not due to the meds.l


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## Salva

Octavia said:


> Salva, I've read stories here from people who reacted poorly right away, but stuck with it and their bodies adjusted to the meds. How long have you given for the different meds to be tolerated/?


I have been on thyroid meds for six years. I have Hashi and when I was diagnosed the TSH level was at 15. Interestingly, I did not have any hypo symptoms at all when I was diagnosed during a routine blood work-up such as loss of energy, dry skin, hair loss, constipation, or insomnia. In the beginning I was prescribed Synthroid (20 mg), every day. In three days on the Synthroid, I ended up in the ER with chest pains. Subsequent tests for cardiac issues were all negative. I finally managed to get the endo to put me on Armour. I did fine on Armour until it was reformulated. Then I became very hyper (frequent bowel issues with internal bleeding, frequent urination, insomnia, and fevers). The symptoms went away after I stopped the drug. Tests for bowel and urinary tract issues were all negative. I was put back on the Synthroid (1/4 of 50 mcg , daily), and I started to get muscle twitching, insomnia, and the same bowel and urinary issues but no fevers. I went to a neurologist about my muscle issues and she said it was a side effect of the thyroid medication. She advised me to keep on taking the meds because I don't have a choice. With each day that went by my hyper symptoms grew worse and they all went away whenever, for a few days, I stopped the medication. I finally found a compounded porcine that I got my doctor to prescribe. At the 15 mg level the side effects were tolerable, but my TSH was at an unacceptable 5.6 range.

A few months ago the doctor increased it to 30 mg, I lost about 5 lbs., (I am not overweight and have never been during this journey), and my TSH dropped to the 3.4 range. Now in addition to all of the other hyper symptoms that I experience, the porcine makes me feel like I am going to jump out of my skin. I am tired of spending a considerable amount of my day in the bathroom and feeling like I drank 20 cups of coffee at one sitting. I again stopped the medication for a few days and my symptoms went away within 24 hours. I purchased an over the counter thyroid supplement and although I did not experience the insomnia and the jitters, the bowel issue continued. Going to the bathroom with bowel issues up to ten to fifteen times a day can get exhausting.

I did go to an integrative medicine specialist this week who is running a battery of thyroid and other tests. In the meantime she told me to stop the over the counter product and she prescribed Tyrosine. She also told me I have both hypo and hyper symptoms. How does one fix both problems????? This week I have been off of everything now for four days because the pharmacy has to order the Tyrosine (12 mcg.) I have never felt this great in six years. I am energetic, I can fall and stay asleep all night, no bowel problems, no urinary problems, no excessive sweating, and I am calm and I do not feel jittery at all. I feel so alive right now for the first time in many years. It is great to be able to sleep all night and wake-up refreshed. I am afraid to give the Tyrosine a try because it will probably make me sick.

So folks, on this and other posts, it is not for my lack of trying. I have been faithfully taking the medication for a long time and intentionally making myself very toxic. How healthy can it be to be toxic every day? Interestingly, my general practitioner could care less that I am toxic. All he cares about is that I take the drug every day. I am sure that if I stay toxic I am going to end up with very serious bowel or other serious diseases. Perhaps my body is telling me that I do not need the medication.

As I mentioned on a previous post, I have seen countless endos including the top thyroid doctor at Hopkins University and he blatantly lied to me and said that no one has intolerance problems to Synthroid...he claimed he had never seen this before. I later found out that he is a paid spokesperson for the company that makes Synthroid. I have learned since and through various support groups that I am not the only one that cannot tolerate thyroid medication. The medical community needs to accept and address this issue and acknowledge that it is a "real" medical problem.

Let me also make it clear that through all of these daily medical issues due to the side effects of the drug, I have maintained a high level professional job, full time, I am a published and successful author, have a wonderful husband, and great family and social life. I am not using my thyroid medication issues or problems as a crutch to dodge responsibilities, to get attention, or to keep me from living each day.


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## Salva

Gwen1 said:


> I was overmedicated recently and I can tell you those are hyper symptoms. Have you been on a steady dose? I also experienced those symptoms as my dose was lowered from being overmedicated. I finally leveled out pretty well by the 8 week mark and symptoms have lessened.
> 
> What are you free T4 and free T3 readings with ranges?


Thank you for your response...you are correct, I do have hyper symptoms. My dose was raised from 15 mg of compounded porcine to 30 mg. I got even more toxic. Perhaps keeping a steady dose is one of the clues to my problem.

My regular doctor has not tested the free ranges; he goes by the TSH. My TSH was about 5.6 and he doubled the prescription and I got even more hyper. I would lower it on my own so that I would not be so toxic. Therefore, no I have not been on a steady dose of medication. My TSH recently dropped to 3.4 and this is when I started to get so jittery. I can deal with the other side effects but the jittery feeling is awful.

This week I went to see an integrative doctor who specalizes in thyroid disorders. She is testing all of my levels including doing the cortisol test. In a few weeks I should have a clearer picture as to the staus of the thyroid, adrenal, and viatmin levels.


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## WildFlowerJo

Unlike you, Salva, I had hypo symptoms (with completely normal tsh results) and kept pushing my doctors until they finally, as a last ditch effort prescribed me Synthroid (this is all before I knew that I had Hashi's). I felt absolutely wonderful for the first time in years! I was running around like a little kid! That feeling, however, only lasted about 3 weeks and then tapered off into just "okay", much better than before the meds but nothing like the first 3 weeks. I was fine with that, at least I was able to function and care for my twin 3 year olds which previously had been impossible. I went on like this for about a year before I started experiencing a racing heart and freaking out about nearly everything. I just KNEW I was dying! I would show up with no notice at my doctors office and make him see me. They would always run an EKG, which was always normal. I would leave his office knowing that something huge was wrong, but everytime be told that I was just having anxiety attacks. Well, heck ya I was having anxiety attacks, I thought I was going to die! Finally, one day I came across an article about Hashi's and forced him to test me for it. Sure enough, the test came back positive. I was elated that I now had an answer! Little good that did me since he said the only treatment for it was thyroid med and since I was already on that there was nothing more to do. No one ever suggested altering the dose of my meds and at that time I was still very uninformed so I didn't think of it myself. since then I have had my gall bladder removed (due to pain and tightness in my stomach), a full hysterectomy (due to endometriosis, uterine polyps and ovarian cysts) and have had several visits to the heart doctor for symptoms that resemble those of a heart attack. My body finally decided it didn't want to convert the Synthroid anymore, so I had to add in Liothyronine. I still have chest pain, arm tightness/pain, stomach tightness/pain, achy tight muscles w/ spasms, insomnia and just feel like crap in general. I now test positive for Hypothyroid, unlike before and if I go off my meds I am like a zombie unable to function. So TIRED! I recently requested a compounded med from my doctor (in my mind I thought I was getting a bio-identical??) but what I ended up with is liothyronine in a compounded capsule. I have yet to use them as the dose is actually larger than I usually take and I can't adjust it like I can the tablets, so kind of a waste. I'm really at a loss for what to do. I would love to compare notes with you, especially on the heart related symptoms. The more I research the side effects of thyroid meds the more I wonder if the majority of my problems can be attributed to them? I know that my adrenals are fatigued so I am working to support them (I question whether the thyroid meds made them worse and wish I would have started treatment with the adrenals). I have started the Iodine protocol and am taking the companion nutrients. I think I have seen some improvement since starting, but it's only been a week so only time will tell. I am taking a whole host of other supplements to support my liver (I have fatty liver too!), my thyroid, my heart, you name it. I am not as tight on my diet as I need to be, really need to completely eliminate dairy and wheat (probably gluten all together). Anyway, that's part of my story. I am certainly sympathetic to your plight! I am thankful for the input of others to help me piece my solution together. Sending good thoughts your way!


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## Salva

WildFlowerJo said:


> Unlike you, Salva, I had hypo symptoms (with completely normal tsh results) and kept pushing my doctors until they finally, as a last ditch effort prescribed me Synthroid (this is all before I knew that I had Hashi's). I felt absolutely wonderful for the first time in years! I was running around like a little kid! That feeling, however, only lasted about 3 weeks and then tapered off into just "okay", much better than before the meds but nothing like the first 3 weeks. I was fine with that, at least I was able to function and care for my twin 3 year olds which previously had been impossible. I went on like this for about a year before I started experiencing a racing heart and freaking out about nearly everything. I just KNEW I was dying! I would show up with no notice at my doctors office and make him see me. They would always run an EKG, which was always normal. I would leave his office knowing that something huge was wrong, but everytime be told that I was just having anxiety attacks. Well, heck ya I was having anxiety attacks, I thought I was going to die! Finally, one day I came across an article about Hashi's and forced him to test me for it. Sure enough, the test came back positive. I was elated that I now had an answer! Little good that did me since he said the only treatment for it was thyroid med and since I was already on that there was nothing more to do. No one ever suggested altering the dose of my meds and at that time I was still very uninformed so I didn't think of it myself. since then I have had my gall bladder removed (due to pain and tightness in my stomach), a full hysterectomy (due to endometriosis, uterine polyps and ovarian cysts) and have had several visits to the heart doctor for symptoms that resemble those of a heart attack. My body finally decided it didn't want to convert the Synthroid anymore, so I had to add in Liothyronine. I still have chest pain, arm tightness/pain, stomach tightness/pain, achy tight muscles w/ spasms, insomnia and just feel like crap in general. I now test positive for Hypothyroid, unlike before and if I go off my meds I am like a zombie unable to function. So TIRED! I recently requested a compounded med from my doctor (in my mind I thought I was getting a bio-identical??) but what I ended up with is liothyronine in a compounded capsule. I have yet to use them as the dose is actually larger than I usually take and I can't adjust it like I can the tablets, so kind of a waste. I'm really at a loss for what to do. I would love to compare notes with you, especially on the heart related symptoms. The more I research the side effects of thyroid meds the more I wonder if the majority of my problems can be attributed to them? I know that my adrenals are fatigued so I am working to support them (I question whether the thyroid meds made them worse and wish I would have started treatment with the adrenals). I have started the Iodine protocol and am taking the companion nutrients. I think I have seen some improvement since starting, but it's only been a week so only time will tell. I am taking a whole host of other supplements to support my liver (I have fatty liver too!), my thyroid, my heart, you name it. I am not as tight on my diet as I need to be, really need to completely eliminate dairy and wheat (probably gluten all together). Anyway, that's part of my story. I am certainly sympathetic to your plight! I am thankful for the input of others to help me piece my solution together. Sending good thoughts your way!
> 
> Thank you for your good wishes, WildFlower.
> 
> As I read through your post I could not help but think that many of the symptoms that you are experiencing are coming from the thyroid medications. I ended up in the ER with chest pains when I was on Synthorid. The ER doctor felt that my problems were coming from the Synthroid and I was sent off to an endo who just lowered my dose. Fortunately, I have not had any heart related issues since then. There are days after about an hour that I take the medication that for no reason at all, I become very jittery. It is not an anxiety attack; I am thyroid toxic. I can sympathize with you as it does feel like I am bout to die. As I mentioned in my previous posts, I stopped the meds several times and I am fine.
> 
> The integrative medical doctor suggested that I stop eating gluten, dairy, and also soy. I usually never eat soy. Anyway these past few days since I have been off the medicine I deliberately have been eating dairy and wheat products and I feel great. Absolutely no running to the bathroom at all. So the theory that my symptoms may be diet related, is not true. The doctor also mentioned taking thyroid medication in the morning because it does cause insomnia. Well I can be sleepy all day and when the side effects kick-in, I am up all nigh, and I always take the medication in the morning.
> 
> I do know that the compounding pharmacy with a prescription does carry porcine capsules. I contacted the pharmacy and inquired as to how the doctor was to write the prescription and fortunately, the doctor wrote the prescription. I did OK on these for over a year but recently, I have been getting terribly toxic. The integrative physician told me that it is the T3 in natural thyroid medications that makes people jittery. She did believe my side effects were real. Hopefully the battery of blood tests and the adrenal function test may provide me with some clues as to my intolerance issue. Interestingly, in the insert that comes with Synthroid sample boxes, it clearly states that doctors should test the adrenals prior to starting a thryroid medication protocol. There is also a warning to the medical professionals on the insert that the drug needs to be dispensed with caution because it could cause a cardiac event.
> 
> Best of luck to you to and I will let you know how my test results pan out. I totally understand what you are going through.


----------



## Octavia

hhhhmmmmm....interesting.

My guess is that your thyroid antibodies are creating these issues. Tell us - are you ONLY getting your TSH tested each time, or are you also getting Free T3 and Free T4 tested?

If your antibodies are going crazy, which they can do with Hashi's, then it will impact your TSH result. Regardless of your TSH level, if your Free T3 and Free T4 are high (and by that, I mean upper end of range, or high out of range), then maybe you don't really need the replacement meds, and maybe they are indeed making you hyper.

I'd like to know some additional lab results if you have them. Antibodies, Free T3, Free T4 if available. That will give us a clearer picture.


----------



## Salva

Octavia said:


> Salva, I've read stories here from people who reacted poorly right away, but stuck with it and their bodies adjusted to the meds. How long have you given for the different meds to be tolerated/?


----------



## Salva

Octavia said:


> hhhhmmmmm....interesting.
> 
> My guess is that your thyroid antibodies are creating these issues. Tell us - are you ONLY getting your TSH tested each time, or are you also getting Free T3 and Free T4 tested?
> 
> If your antibodies are going crazy, which they can do with Hashi's, then it will impact your TSH result. Regardless of your TSH level, if your Free T3 and Free T4 are high (and by that, I mean upper end of range, or high out of range), then maybe you don't really need the replacement meds, and maybe they are indeed making you hyper.
> 
> I'd like to know some additional lab results if you have them. Antibodies, Free T3, Free T4 if available. That will give us a clearer picture.


Hi Octavia,

Thank you for your sage advice. Your information makes such sense to me since I am constantly in a hyper stage. How good can it be to the body to be constantly hyperthyroid?

This week I saw an integrative medical doctor and I had blood work done for various thyroid levels (everything that you mentioned, 8 vials of blood), along with checking vitamin levels, and a cortisol saliva test. I am scheduled to go back for a follow-up at the end of the month. She will then go over the results of the tests with me. I sure hope that my levels are high as you mentioned and perhaps I will get lucky and be able to go off the medication. In the meantime she prescribed the new liquid synthetic medication (Tirosin). I have not taken this drug yet because the pharmacy had to order it. I have been off all thyroid meds for the past four days and I feel wonderful (absolutely no jitters, bowel issues, urinary frequency, sweats, or insomnia at all, and I have lots of energy, too). I will post the results of the new tests when I receive them at the end of the month.

For the past several years, my doctor has based my thyroid condition on the TSH level. When I was first diagnosed the TSH was at 15 and now it is in the 3.4 range. My last blood work that my primary care physician did in November 2013 stated the following (he did not test any other thyroid levels and never has):

Tests ordered by the primary care physician yearly and the results as of November 2013.
Thyroxine (T4) 9.1 ug/dl (4.5 to 14.0 range)
TSH 3.491 uiU/mL (0.400-4.000 range)

I saw several endos when I was first diagnosed in 2008-2009. The endo did the antibody test for Hashi and it was positive. I have never been retested for antibodies since then. At that time the latest blood work from the endo before she released me and told me that my regular physician should take over the management of the thyroid condition shows the results noted below. I know these labs are old, but I just want to give you an idea of the type of thyroid testing that I have had in the past. I was on Armour at the time this test was taken and tolerating the medication well. Then it was reformulated and I got very ill and had to go off the drug. In addition to all of my hyper symptoms I was experiencing fever on a weekly basis. All the symptoms went away after I stopped the Armour. Now I get all of the hyper symptoms on the other thyroid meds but no fevers.

Tests ordered by the endo and the results as of December 2009.
T-Uptake 31.1 % (range is 4.50-12.50)
Total T4 7.53 ug/dl (range is 1.1 to 4.1)
FTI calc 2.3 Ratio (range is 1.1 to 4.1)
TSH 3.33 ulU/mL (range is 0.40 to 4.00)

I really appreciate your efforts in helping me out; you seem very knowledgeable. I had no idea that that FT3 and 4's should also be looked at in the management of thyroid diseases. I thought the almighty TSH level was the determining factor in the prescribing of meds for the condition.

Salva


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## Octavia

Okay, thanks for the additional information.

In 2009, you Total T4 was quite high, and out of range. I sure wish they would have taken Free T4, but that Total T4 indicates hyper to me. Your uptake percentage at that time was high as well. I'm not well-versed on uptake results and what they mean, but I'm pretty sure yours indicates hyper. Is that when you started on the thyroid medicine? That may have been the first mistake.

When you had your antibodies tested, do you recall how high they were? I see you've noted that the results were "positive." But they can be just slightly out of range positive, or astronomically high positive, and from what I've learned from others here, the astronomically high antibodies case exponentially more problems than the just out of range antibodies.

Many people on this forum have dealt with Hashi's for many years, and they often report that it seems like a rollercoaster ride. They work for years to try and get stable on meds, but it simply never happens. Then they have the gland removed surgically, and the body cooperates again because the antibodies no longer have anything to attack.

What I'm writing here is based only on other people's experiences that I've read about here on the forum. It is not based on research, conversations with doctors, or first-hand experience. It sounds like this integrative medicine doctor is taking a much more thorough look at what's going on with your body.

Please do keep us posted on your new results.

Some here have had good luck with Tirosint after trying other meds. But if your issue is being hyperthyroid, then I'm not sure your results with Tirosint will be much different than what you've experienced with others. If your issue is not being hypothyroid and instead, you're reacting to something in the drug itself, then Tirosint might very well work better for you.

When were you on Armour? I've never taken it, but I think maybe they went back to the original formula a while back. If you were on the original formula, then didn't tolerate the new formula, it's something to look into. Others here take Armour, so they're going to be much more informed about it.

Take care. :hugs:


----------



## Salva

Octavia said:


> Okay, thanks for the additional information.
> 
> In 2009, you Total T4 was quite high, and out of range. I sure wish they would have taken Free T4, but that Total T4 indicates hyper to me. Your uptake percentage at that time was high as well. I'm not well-versed on uptake results and what they mean, but I'm pretty sure yours indicates hyper. Is that when you started on the thyroid medicine? That may have been the first mistake.
> 
> When you had your antibodies tested, do you recall how high they were? I see you've noted that the results were "positive." But they can be just slightly out of range positive, or astronomically high positive, and from what I've learned from others here, the astronomically high antibodies case exponentially more problems than the just out of range antibodies.
> 
> Many people on this forum have dealt with Hashi's for many years, and they often report that it seems like a rollercoaster ride. They work for years to try and get stable on meds, but it simply never happens. Then they have the gland removed surgically, and the body cooperates again because the antibodies no longer have anything to attack.
> 
> What I'm writing here is based only on other people's experiences that I've read about here on the forum. It is not based on research, conversations with doctors, or first-hand experience. It sounds like this integrative medicine doctor is taking a much more thorough look at what's going on with your body.
> 
> Please do keep us posted on your new results.
> 
> Some here have had good luck with Tirosint after trying other meds. But if your issue is being hyperthyroid, then I'm not sure your results with Tirosint will be much different than what you've experienced with others. If your issue is not being hypothyroid and instead, you're reacting to something in the drug itself, then Tirosint might very well work better for you.
> 
> When were you on Armour? I've never taken it, but I think maybe they went back to the original formula a while back. If you were on the original formula, then didn't tolerate the new formula, it's something to look into. Others here take Armour, so they're going to be much more informed about it.
> 
> Take care. :hugs:


Hi,

I am so sorry, but I posted some of the ranges incorrectly from my test in 2009 when I was on Armour. Below are the correct ranges.

T-Uptake is 31.1 ( no ranges were listed)

Total T4 was 7.52 (range is 4.50 to 12.50) Normal

FTI clac 2.3 (range is 1.1 to 4.1) Normal

TSH 3.33 (range is 0.40 to 4.00) Normal

If I am recalling correctly, I always have had normal T4 and T3 ranges. Free T3 in the past was 3.1 (1.8 to 4.2 range). I always questioned how these two values could be normal but my TSH was not. I never got an answer from the endo. She told me that this was indicative of an absorption problem. Supposedly I was not absorbing the drug properly in my system and therefore I was hypo based on the TSH.

I found two other tests that date to 2010. I believe these were the tests that the Hashi diagnosis was based on:

FT4 1.0 (range is 0.8 to 1.5)

TSH-3 gen 1.34 (range is 0.40 to 4.00)

As I look back on my time on Armour, I was always toxic. The doctors convinced that the cause of my intestinal issue was IBS. The bottom line is that unless I find out the root cause of the thryid problem and get that treated, I doubt if any thyroid medicine is not going to make me toxic.

Many thanks for your help.


----------



## Octavia

Okay...so if I'm understanding correctly, it looks like you've had a handful of tests that fall into the normal ranges.

Would it be correct to say:


For the tests that were in the normal ranges, you WERE on thyroid meds but felt toxic?
For the tests that were not in the normal ranges (very high TSH, for example), you WERE NOT on thyroid meds? Or maybe not enough thyroid meds? And I'm going to guess you felt somewhat lethargic at those times, too? Is that correct? Less toxic, but perhaps lethargic?

In your files, do you have any antibody test results?


----------



## Salva

Octavia said:


> Okay...so if I'm understanding correctly, it looks like you've had a handful of tests that fall into the normal ranges.
> 
> Would it be correct to say:
> 
> 
> For the tests that were in the normal ranges, you WERE on thyroid meds but felt toxic?
> For the tests that were not in the normal ranges (very high TSH, for example), you WERE NOT on thyroid meds? Or maybe not enough thyroid meds? And I'm going to guess you felt somewhat lethargic at those times, too? Is that correct? Less toxic, but perhaps lethargic?
> 
> In your files, do you have any antibody test results?Ho Octavia,


Hi Octavia,

For the tests that were in the normal ranges and I *Was* on the thyroid meds, I most definitely was toxic (frequent bowel movements that lead to intestinal bleeding, fevers, frequent urination, and insomnia).

Whenever my TSH was above range like 5.6 or more, I was on the medicine, but I NEVER felt lethargic. I was constantly feeling toxic when my range was in the hypo stage, but I always had and have plenty of energy. I recall in the early days of thyroid treatment having my blood drawn after an awful night of hyper symptoms. My blood test cambe back with a TSH in 6.0 range.

Regardless of my ranges, I can honestly say that I am constantly toxic. I can also state that I have never felt lethargic or tired at all. Even when my TSH level was at 15 when I was first diagnosed in 2008.

I cannot find any antibody test results. I do recall clearly the endo telling me that I tested positive for the antibodies. I think she based her finding on the T3 gen score.

Thank you so much for the valuable infomation that you have given me. You're the best!

Salva


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## Andros

It would be a good idea to get TSI (Thyroid Stimulating Immunoglobulin) antibodies test and FREE T3 lab test. Let us know if you do that and what the results are and please include the ranges.

T3 is a Total test which is comprised of bound, unbound and rT3 (reverse) hormone. You need the FREE T3 which is the unbound hormone available for cellular uptake.

Hugs,


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## Andros

Have you had a radioactive uptake scan (RAIU?) If not, I recommend it.


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## joplin1975

Yes, especially the TSI test. I was also intolerant to thyroid meds...I suspect because of the TSI.


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## CA-Lynn

Sorry - don't have time to read through this thread. Did you have an upper/lower endoscopy/colonoscopy?


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## Salva

Andros said:


> Have you had a radioactive uptake scan (RAIU?) If not, I recommend it.


Many thanks for your response.

No, I have not had a radioactive uptake scan. It is my understanding that the RAIU is sually ordered by a medical professinal based on the results of a sonogram of the thyroid. Usually the sonogram is suspicious for nodules or thyroid cancer. I had an ultrasound of the thyroid several years ago and I do not have an enlarged thyroid or nodules. Therefore, no further testing was recommended by the endo.

Wy would you recommend the RAIU when the thyroid gland does not have nodules and it is not inlarged? I am interested in getting your thoughts about the uptake scan and its relationship to intolerance to thyroid medication. I have not pursued this angle but I will if it will be of benefit to me. However, I cannot force the doctors to send me for test unless they feel that they are needed.

I have had to pay recently lots of money out-of-pocket to get the help that I need from an integrative medical doctor. I cannot begin to tell you how much money I have spent in the past to find a cure for my intolerance disease. The conventional practitioners have refused to test my cortisol levels or recommend further thyroid testing. They are not versed at all in dealing with folks that are intolerant to drugs. The conventional medical doctors claim that no one has issues to taking thyroid meds...they have never seen this problem.

Salva


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## Salva

CA-Lynn said:


> Sorry - don't have time to read through this thread. Did you have an upper/lower endoscopy/colonoscopy?


Since being diagnosed with thyroid issues in 2008, I have had an endoscopy and three colonoscopies...all normal. I have been off thyroid meds now for almost two weeks and I have not had any bowel issues at all. I am totally normal. The thyroid meds also gives me frequent urination (like every 5 minutes when the hyper state kicks-in). I Recently I had a cystoscopy and a kindney/bladder ultarsound that were both normal. Since I have been off the meds I do not have any urinary frequency, bowel issues, no insomnia, no jittery feelings, and I am not tired at all. I feel alive for the first time in six years.


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## Salva

Andros said:


> Have you had a radioactive uptake scan (RAIU?) If not, I recommend it.





joplin1975 said:


> Yes, especially the TSI test. I was also intolerant to thyroid meds...I suspect because of the TSI.


I am very much interested in finding out from you how you resolved your intolerance to thyroid medication. What medical protocol helped you out?

According to the endo, she did the antiody test in 2009 that you are referring to and she said I tesped positive for HASHI.

I recently saw an integrative medical doctor who specializes in thyroid and hoormone related disorders. She ordered the following tests. I will see her at the end of the month for the results.

Folic Acid Serum, Magnesium RBC, Seleniun, and an Assay of Vitamin D 25-Hydroxy

Vitamin B12

Assy of Ferritin

Thyroid Peroxidase

Antithyroglobulin Abs

T3 Reverse

TSH

Thyroxine (T4) fee, direct

Triiodothyronine Free (T3)

Cortisol Saliva Tests (Cortisol and DHEA)

Hopefully some of these tests will point to why I am intolerant to thyroid medication. Many thanks for your concern and help.


----------



## Salva

Andros said:


> It would be a good idea to get TSI (Thyroid Stimulating Immunoglobulin) antibodies test and FREE T3 lab test. Let us know if you do that and what the results are and please include the ranges.
> 
> T3 is a Total test which is comprised of bound, unbound and rT3 (reverse) hormone. You need the FREE T3 which is the unbound hormone available for cellular uptake.
> 
> Hugs,


Hi Andros,

Last week I saw an integrative medical doctor who specializes in thyroid and hoormone related disorders. This is the same practice that Mary Shomon uses. The integrative medical doctor ordered the following tests. I will see her at the end of the month for the results. I will post the results when I get them and let you know her thoughts.

Folic Acid Serum, Magnesium RBC, Seleniun, and an Assay of Vitamin D 25-Hydroxy

Vitamin B12

Assy of Ferritin

Thyroid Peroxidase

Antithyroglobulin Abs

T3 Reverse

TSH

Thyroxine (T4) fee, direct

Triiodothyronine Free (T3)

Cortisol Saliva Tests (Cortisol and DHEA)

Hopefully some of these tests will point to why I am intolerant to thyroid medication. Many thanks for your concern and help.


----------



## Salva

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!


Hi Witty,

I have the same problem as you and the same reactionas to you when I go off the thyroid medication. Any medication, regarless of the amount makes me hyper. It has been a while since you posted your concerns. By any chance, have you been able to resolve your thyroid medication intolerance? If so, what type of medical protocol did you follow? Any advice that you can give me will be deeply appreciated.

Salva


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## WildFlowerJo

Salva, I have been told that my intolerance to thyroid meds is due to my adrenal fatigue. ?? Do you know how well your adrenals are functioning? You may already know this, but one of the simplest tests is to do a sitting and standing blood pressure. If your standing pressure is lower than your sitting, then your adrenals are not working correctly.

May I ask what lead you to getting the Hashi's diagnosis? You have stated that you don't experience hypo symptoms, what symptoms caused you to seek evaluation? Just curious. 

Also, I thought I would mention a product called Thytrophin PMG by Standard Process. Supposedly, it attracts the antibodies and helps keep them from attacking your thyroid or something along those lines. It might be something to look into while you are off your meds as a safeguard for your thyroid?


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## Swimmer

In my case, my eyeballs ached out of nowhere! WOw - zap crunch zlit the first day (and on some other occasions) and off this stuff all out of my body -- I'm good! Definitely the synthetics. Also, some strange breathing episodes - and one night - like heavy chest & hard to breathe -- all three episodes within the 10 days on these meds. However, going off the synthetic and back to myself (and even now on armour) all is well  Back to normal concerning these two issues, they were without a doubt definitely related to the "new thing in my life" which was the synthetic thyroid hormones, synthriod and tirosint. My endo who's awesome and doing this for 40 years got me off them asap, said, "You just can't take a good pill." Everybody's different. Some can't tolerate what others can. (He really didn't want me on armour, but it was better than nothing.)


----------



## Salva

WildFlowerJo said:


> Salva, I have been told that my intolerance to thyroid meds is due to my adrenal fatigue. ?? Do you know how well your adrenals are functioning? You may already know this, but one of the simplest tests is to do a sitting and standing blood pressure. If your standing pressure is lower than your sitting, then your adrenals are not working correctly.
> 
> May I ask what lead you to getting the Hashi's diagnosis? You have stated that you don't experience hypo symptoms, what symptoms caused you to seek evaluation? Just curious.
> 
> Also, I thought I would mention a product called Thytrophin PMG by Standard Process. Supposedly, it attracts the antibodies and helps keep them from attacking your thyroid or something along those lines. It might be something to look into while you are off your meds as a safeguard for your thyroid?


I just did the adrenal saliva tests and it will take a couple of weeks before I get the results. I did the test several years ago and the level was high at night. The integrative medicine person at that time prescribed a cortisol control supplement. However, my conventional doctor convinced me then that it was all rubbish. Long story short, I did not take the supplement. I opted to struggle with the porcine and other medications. Have you resolved your intolerance issue after the adrenals issue was addressed? If so, how did you resolve your problem?

I wasn't having any hypo symptoms. It was through a routine and yearly blood test, my TSH was over 5.0 and the doctor told me to come back and have the THS retested in a month. I took some iodine supplements and my TSH dropped. This went on for a few years. Then my blood work in 2008 showed that my TSH was at 15. At that point I was immediately put on 20mg of Synthroid each day. By the third day I was rushed to the hospital with chest pains. All subsequent cardiac tests were negative for heart issues. Off I was sent to an endo and then put on a low dose of Synthorid 1/4 of a 50 mcg pill. Within 24 hours the side effects kicked-in (bowel and urinary frequency, insomnia, and the jitters but no chest pain). I was switched to Armour and I did OK on this for a few months and then the side effects kicked in, everything I mentioned before including fevers and intestinal bleeding. All subsequent tests for these disorders were negative. Similar problems on the compounded porcine. I have been off all meds for two weeks and I feel great.

By the way, I did the blood pressure test and my blood pressure is much lower standing then when I am sitting. I don't understand how adrenal fatigue can impact on the body's abiity to process thyroid medication. However, if this is the root cause of my problem, and the problem is resolved if the adrenal issue is addressed, I will be so happy. As I side bar, I am intolerante to a lot of other types of prescription drugs, too.

Thank you for your concern.

Salva


----------



## Salva

Swimmer said:


> In my case, my eyeballs ached out of nowhere! WOw - zap crunch zlit the first day (and on some other occasions) and off this stuff all out of my body -- I'm good! Definitely the synthetics. Also, some strange breathing episodes - and one night - like heavy chest & hard to breathe -- all three episodes within the 10 days on these meds. However, going off the synthetic and back to myself (and even now on armour) all is well  Back to normal concerning these two issues, they were without a doubt definitely related to the "new thing in my life" which was the synthetic thyroid hormones, synthriod and tirosint. My endo who's awesome and doing this for 40 years got me off them asap, said, "You just can't take a good pill." Everybody's different. Some can't tolerate what others can. (He really didn't want me on armour, but it was better than nothing.)


You are so lucky that you have an endo that understands that thyroid meds can cause side effects. Again, you are so lucky that you can tolerate Armour. I was on the Armour and I did OK on it for a few months and then the horrible side effects kicked-in. On Armour I started to have fevers and intestinal bleeding. It was hard for me to function with a fever and I had to get off the stuff. The integrative medicine doctor did give me alow dose prescritpiton (13mcgs) for Tirosint but I am afraid to take it. I am sure that I am going to have issues on this drug, too. I feel so good not taking any thyroid medicine. I know that this will not last too long, and then I will have to back to the meds, and to thyroid hell. I should just wait until I get my new test results and then proceed with a medical protocol. How healthy can it possibly be to be thyroid toxic every day????????

Yeah, the endos and even the integrative medicine specialists do not like the natural stuff. It does have T3 and it is the T3 that bothers the endos. They claim it can cause cardiac issues and nervousness. Then again, if my T3 levels are normal, do I really need a medication with an additional hormone in it????? Something to think about.

Thanks for responding to my post.


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## WildFlowerJo

Salva, Hmmm....do you ever wonder how things would have went if you hadn't had the blood test? I often think there is way too much stock put in test results and not near enough in how a person feels. Did your TSH go back up while you were still supplementing with iodine or had you stopped? Perhaps you needed to increase your dosage of iodine? TSH will also sometimes rise with iodine supplementation, but may not always stay high. I've also read that iodine supplementation will likely need to be continued for life? maybe you need to revisit the whole iodine thing before you try more meds? Especially since it seemed to work for you before? I just recently read *Iodine; Why you need it, Why you can't live without it* by Dr. Brownstein and *The Iodine Crisis: What you don't know about Iodine can Wreck your life* by Lynne Farrow (such a good book!). If you haven't read either of these, I highly recommend it! Just a thought!


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## jenny v

If you have the antibodies for both Hashi's (TPO Ab) and Graves (TSI), that might be a reason you cannot tolerate thyroid meds. Your body is fighting itself and then also fighting the meds, so it's just a big mess. Your integrative doc has requested labs for good things, but I would also see if you can get that TSI test, too.

I don't want to speak for joplin, but I believe she solved her intolerance to thyroid meds by having her thyroid removed. Take away the target of the attack and your body calms down and the meds can work.


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## joplin1975

jenny v said:


> If you have the antibodies for both Hashi's (TPO Ab) and Graves (TSI), that might be a reason you cannot tolerate thyroid meds. Your body is fighting itself and then also fighting the meds, so it's just a big mess. Your integrative doc has requested labs for good things, but I would also see if you can get that TSI test, too.
> 
> I don't want to speak for joplin, but I believe she solved her intolerance to thyroid meds by having her thyroid removed. Take away the target of the attack and your body calms down and the meds can work.


Yes, I did.

TPOs were in the 720s range and TSI was at 129%. My first (and only!) week on thyroid meds was a disaster. My husband told me it was like living with a meth addict (not sure where he gets the experience to make the comparison! :tongue0013: ). My boss kept trying to send me home because I was so bad. It was like being manic but totally exhausted all at once. That all said, I had cancer, so the treatment/therapy route was much easier than you folks with "only" autoimmune issues.


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## Salva

joplin1975 said:


> Yes, I did.
> 
> TPOs were in the 720s range and TSI was at 129%. My first (and only!) week on thyroid meds was a disaster. My husband told me it was like living with a meth addict (not sure where he gets the experience to make the comparison! :tongue0013: ). My boss kept trying to send me home because I was so bad. It was like being manic but totally exhausted all at once. That all said, I had cancer, so the treatment/therapy route was much easier than you folks with "only" autoimmune issues.





joplin1975 said:


> Yes, I did.
> 
> TPOs were in the 720s range and TSI was at 129%. My first (and only!) week on thyroid meds was a disaster. My husband told me it was like living with a meth addict (not sure where he gets the experience to make the comparison! :tongue0013: ). My boss kept trying to send me home because I was so bad. It was like being manic but totally exhausted all at once. That all said, I had cancer, so the treatment/therapy route was much easier than you folks with "only" autoimmune issues.


I will see what happens when I get my results. I am not in favor of having a gland removed unless it is medically necessary such as in a cancer diagnosis. I have been in touch with folks who have no gland and they too are intolerante to thyroid medications. They don't have a choice but to take the medication regardless of what it does to them. Removing the gland does not always solve the intolerance issue. One lady who contacted me had her gland removed because of cancer. She was on Synthorid for many years and all of a sudden her body reacted violently to the drug. She is on all sorts of meds to keep her from shaking and she has the same intolerance medical issues as I do. will inquire about the TSI test when I see the integrative medical specialist. I believe that I don't have any Graves-related symptoms.


----------



## Salva

WildFlowerJo said:


> Salva, Hmmm....do you ever wonder how things would have went if you hadn't had the blood test? I often think there is way too much stock put in test results and not near enough in how a person feels. Did your TSH go back up while you were still supplementing with iodine or had you stopped? Perhaps you needed to increase your dosage of iodine? TSH will also sometimes rise with iodine supplementation, but may not always stay high. I've also read that iodine supplementation will likely need to be continued for life? maybe you need to revisit the whole iodine thing before you try more meds? Especially since it seemed to work for you before? I just recently read *Iodine; Why you need it, Why you can't live without it* by Dr. Brownstein and *The Iodine Crisis: What you don't know about Iodine can Wreck your life* by Lynne Farrow (such a good book!). If you haven't read either of these, I highly recommend it! Just a thought!


I stopped the Kelp supplement because everything that I read states that is bad for a Hashi condition. I ordered one of the two books that you posted and I will go from there. I am taking a B supplement right now that does have some kelp. Thus far I have been off the medicine for over two weeks and I feel fine. I wish all of these doctors would take into consideration how I feel, physically. The TSH score is their bible.


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## Salva

WildFlowerJo said:


> Salva, Hmmm....do you ever wonder how things would have went if you hadn't had the blood test? I often think there is way too much stock put in test results and not near enough in how a person feels. Did your TSH go back up while you were still supplementing with iodine or had you stopped? Perhaps you needed to increase your dosage of iodine? TSH will also sometimes rise with iodine supplementation, but may not always stay high. I've also read that iodine supplementation will likely need to be continued for life? maybe you need to revisit the whole iodine thing before you try more meds? Especially since it seemed to work for you before? I just recently read *Iodine; Why you need it, Why you can't live without it* by Dr. Brownstein and *The Iodine Crisis: What you don't know about Iodine can Wreck your life* by Lynne Farrow (such a good book!). If you haven't read either of these, I highly recommend it! Just a thought!


Wildflower,

Since you were told that your intolerance was due to the adrenals not working, what did you do? Are you now tolerante to drugs after the adrenal issue was fixed? Can you give me some insight as to how you are managing your thyroid issue. Thank you.

Salva


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## joplin1975

Salva said:


> I will see what happens when I get my results. I am not in favor of having a gland removed unless it is medically necessary such as in a cancer diagnosis. I have been in touch with folks who have no gland and they too are intolerante to thyroid medications. They don't have a choice but to take the medication regardless of what it does to them. Removing the gland does not always solve the intolerance issue. One lady who contacted me had her gland removed because of cancer. She was on Synthorid for many years and all of a sudden her body reacted violently to the drug. She is on all sorts of meds to keep her from shaking and she has the same intolerance medical issues as I do. will inquire about the TSI test when I see the integrative medical specialist. I believe that I don't have any Graves-related symptoms.


I didn't have any Grave's related symptoms either.

Also, I think post-op intolerance to Synthroid is pretty common. You'd need to find a doctor who would be proactive and creative. That is, who would consider other drugs than the almighty synthroid (which I happen to love).


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## WildFlowerJo

Salva,

I am currently working on strengthening my adrenals and have started the Iodine protocol advocated in the books I recommended. I too avoided iodine forever because of Hashi's, although after reading both of these books I have decided that it is well worth the try to see if it helps. So far, so good. According to these books, not only does our thyroid depend on iodine, but so do our adrenals and our breasts (not to mention every other cell in our bodies!). I tend to believe that things are much simpler than some experts imply, i.e. nutritional deficits. I have all but given up on conventional doctors, I work with one now, but only as a means of having tests run and such. I have received much more help/good advice from alternative practitioners. Like you, I am not a fan of having the gland removed as a solution. I understand that for some, there may be no other answer, but for me, I will go to hell and back before I do it. I have already had my gall bladder and uterus/ovaries removed and regret it every day of my life. It's clear to me after supplementing hormones, that there is nothing better than what your own body produces! I am also going to educate myself on eating to raise my body temperature (do you track your body temp?) and am looking more closely at simple things like salt and coconut oil. I am listening to my body and not taking so much stock in tests. I'm so glad that you are still feeling good off your meds! Some day I plan to be off mine! I just KNOW it's possible!


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## Salva

WildFlowerJo said:


> Salva,
> 
> I am currently working on strengthening my adrenals and have started the Iodine protocol advocated in the books I recommended. I too avoided iodine forever because of Hashi's, although after reading both of these books I have decided that it is well worth the try to see if it helps. So far, so good. According to these books, not only does our thyroid depend on iodine, but so do our adrenals and our breasts (not to mention every other cell in our bodies!). I tend to believe that things are much simpler than some experts imply, i.e. nutritional deficits. I have all but given up on conventional doctors, I work with one now, but only as a means of having tests run and such. I have received much more help/good advice from alternative practitioners. Like you, I am not a fan of having the gland removed as a solution. I understand that for some, there may be no other answer, but for me, I will go to hell and back before I do it. I have already had my gall bladder and uterus/ovaries removed and regret it every day of my life. It's clear to me after supplementing hormones, that there is nothing better than what your own body produces! I am also going to educate myself on eating to raise my body temperature (do you track your body temp?) and am looking more closely at simple things like salt and coconut oil. I am listening to my body and not taking so much stock in tests. I'm so glad that you are still feeling good off your meds! Some day I plan to be off mine! I just KNOW it's possible!


Hi Wildflower,

I won't know the results of the adrenal tests for several weeks. As I mentioned previously, I did the adrenal test many years ago and my level was elevated at night. The practiioner suggestested something called Cortisol Mananger (available online). My PC carried on and I did not take it.

I am looking forward to reading the book when I receive it. I should give the iodine a try and see what happens. Our bodies have the amazing ability to heal and maybe I should listen to my body. I am going to listen to you, read the books, and start tracking my body temperature. You are giving me hope...thank you!

I am not an advocate of having any body part removed unless it is a life threatning situation. I cannot begin to tell you and the others following these posts how many people have contacted me who did not need the thyroid removed and now regret their decision. The folks that have written to me are beyond post-op intolerance. I am talking about folks that have been on both natural and synthetic thyroid hormones for years and still are intolerante. I felt so bad for one lady who wrote to me and now she is so ill because she has to take the medicine. She had her thyroid removed and ten years post op she developed severe intolerance to the drug. So sad!

I gather from this post that in addition to iodine you are taking a thyroid drug. Or perhaps you are referring getting off the iodine someday??? It has been two weeks today and I feel great. My intesitnes are working normally, no frequent urination, the dry skin patch on my hand went away without medication, and I don't feel like I want to jump out of my skin. I have plently of energy. However, I keep wondering what the lack of the hormone may be doing internally. Is it raising the blood cholesterol level, which supposedly thyroid issues do?????

Please keep in touch.

Sally


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## Airmid

Salva said:


> I will see what happens when I get my results. I am not in favor of having a gland removed unless it is medically necessary such as in a cancer diagnosis. I have been in touch with folks who have no gland and they too are intolerante to thyroid medications. They don't have a choice but to take the medication regardless of what it does to them. Removing the gland does not always solve the intolerance issue. One lady who contacted me had her gland removed because of cancer. She was on Synthorid for many years and all of a sudden her body reacted violently to the drug. She is on all sorts of meds to keep her from shaking and she has the same intolerance medical issues as I do. will inquire about the TSI test when I see the integrative medical specialist. I believe that I don't have any Graves-related symptoms.


While many of us do speak from our own personal experiences, don't necessarily let the experience of others rule you. Several people here are operating well without a thyroid and my own aunt who had her gland removed due to cancer (she's related sadly by marriage since it would at least give me the cancer link), has been doing fine without it for over 25 years. Keeping it in also hasn't worked for some of us, such as myself, as my thyroid says blah to the whole under control thing, at least the small piece I have left. While removing the gland doesn't necessarily stop the intolerant issue, it doesn't always mean it will continue either. Understanding what is going on before any rash decisions are made however, is a good move.

It does seem strange to me that someone on thyroid replacement for years would suddenly have such a violent reaction to the thyroid meds. Perhaps it wasn't necessarily the thyroid meds and instead a generic was used and she instead had an allergic reaction to one of the fillers? Did they try other thyroid meds or even another generic or put her back to the one she was one if she was switched?

I honestly don't blame your doctor for being against the idea of adrenal fatigue. It is a medically unsupported diagnosis and I would highly recommend you researching more into it. This is what the Mayo Clinic has to say on the subject:

http://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906



WildFlowerJo said:


> Salva, Hmmm....do you ever wonder how things would have went if you hadn't had the blood test? I often think there is way too much stock put in test results and not near enough in how a person feels. Did your TSH go back up while you were still supplementing with iodine or had you stopped? Perhaps you needed to increase your dosage of iodine? TSH will also sometimes rise with iodine supplementation, but may not always stay high. I've also read that iodine supplementation will likely need to be continued for life? maybe you need to revisit the whole iodine thing before you try more meds? Especially since it seemed to work for you before? I just recently read *Iodine; Why you need it, Why you can't live without it* by Dr. Brownstein and *The Iodine Crisis: What you don't know about Iodine can Wreck your life* by Lynne Farrow (such a good book!). If you haven't read either of these, I highly recommend it! Just a thought!


The vast majority of Americans get all their necessary iodine from their food. Same with most developed countries. Even just using table salt with iodine in it is enough according to my own doctors. Now some places in the developed world can develop goiters just due to regional diet, such as Northern Italy but it is much rarer today then it was. To keep matters simple for me I'll also link what the Mayo Clinic says about this, you can look into further:

http://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906

I see so many things claiming to cure hypothyroidism by their iodine products but Hashimoto's isn't caused by that, instead it is an autoimmune process. Salva, I would highly recommend you check to see if you are iodine deficient with your doctor before starting any program. Also there is a pretty intensive way to check to see if your adrenals are working through several blood draws during the same day. I am in no way saying that what you are experiencing isn't real. In fact I think you should have all values to your thyroid checked as something like Hashitoxicosis is a very real thing (I just found a medical paper from the mid-1980's about a case study even using that term the other day!) and could be causing at least some of your issues.

Finally here's a story of a lady suffering from Hashitoxicosis for years and what she went through, as you might very well find some similarities, including the intolerance to thyroid medication:

http://voices.yahoo.com/hashitoxicosis-signs-symptoms-hashimotos-thyroiditis-6159572.html?cat=5


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## Salva

Airmid said:


> While many of us do speak from our own personal experiences, don't necessarily let the experience of others rule you. Several people here are operating well without a thyroid and my own aunt who had her gland removed due to cancer (she's related sadly by marriage since it would at least give me the cancer link), has been doing fine without it for over 25 years. Keeping it in also hasn't worked for some of us, such as myself, as my thyroid says blah to the whole under control thing, at least the small piece I have left. While removing the gland doesn't necessarily stop the intolerant issue, it doesn't always mean it will continue either. Understanding what is going on before any rash decisions are made however, is a good move.
> 
> It does seem strange to me that someone on thyroid replacement for years would suddenly have such a violent reaction to the thyroid meds. Perhaps it wasn't necessarily the thyroid meds and instead a generic was used and she instead had an allergic reaction to one of the fillers? Did they try other thyroid meds or even another generic or put her back to the one she was one if she was switched?
> 
> I honestly don't blame your doctor for being against the idea of adrenal fatigue. It is a medically unsupported diagnosis and I would highly recommend you researching more into it. This is what the Mayo Clinic has to say on the subject:
> 
> http://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906
> 
> The vast majority of Americans get all their necessary iodine from their food. Same with most developed countries. Even just using table salt with iodine in it is enough according to my own doctors. Now some places in the developed world can develop goiters just due to regional diet, such as Northern Italy but it is much rarer today then it was. To keep matters simple for me I'll also link what the Mayo Clinic says about this, you can look into further:
> 
> http://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906
> 
> I see so many things claiming to cure hypothyroidism by their iodine products but Hashimoto's isn't caused by that, instead it is an autoimmune process. Salva, I would highly recommend you check to see if you are iodine deficient with your doctor before starting any program. Also there is a pretty intensive way to check to see if your adrenals are working through several blood draws during the same day. I am in no way saying that what you are experiencing isn't real. In fact I think you should have all values to your thyroid checked as something like Hashitoxicosis is a very real thing (I just found a medical paper from the mid-1980's about a case study even using that term the other day!) and could be causing at least some of your issues.
> 
> Finally here's a story of a lady suffering from Hashitoxicosis for years and what she went through, as you might very well find some similarities, including the intolerance to thyroid medication:
> 
> http://voices.yahoo.com/hashitoxicosis-signs-symptoms-hashimotos-thyroiditis-6159572.html?cat=5


Hi Airmid,

Thank you so much for responding to my post and for posting the links. I am aware of the pros and cons about testing the adrenal glands. However, I cannot disregard that my levels were high in the evening when I did the first adrenal saliva test. I will have to wait and see what the second test comes-up with.

I am also aware that some folks do well without a thryoid; others can take thryoid medications without have any adverse side effects. The lady that had the violent reaction to the thryroid medication after ten years was on Synthroid ( the brand drug and not generic). All of the endos she has seen are puzzled by what happened to her. She is on all sorts of meds to control the hyper symptoms. So sad!

I too see so many things out there claiming that they will cure hypo and hyper conditions. I approach all of this with a grain of salt. I am simply trying to educate myself. One thing I do know is that the two weeks that I have been off the thyroid medication have been heaven on earth. I don't want to go back to my thyroid toxic world. Although my TSH is on the high end of normal, I have more hyper symptoms on the medication then I have hypo symptoms. My energy level is so much better now then before and it feels so good to sleep at night instead of battling insomnia. To go through the day without having to constantly look for a bathroom is an amazing experience. My intestines and urinary tract are smiling right now.

I read the artice abou the lady with the toxic problem that you posted. I sure can relate to the situation. They kept her off the meds and maybe I should be kept off the meds too until I develop "real" hypo symptoms. Frotunately my toxic problem has not been as severe as hers because I only experienced the heart issues one time and I ended up in the ER. This was when I was prescibed a supposedly low dose of brand name Synthroid (20 mg). After three days on this course I had terrible caridac pains. I am going to share the link to the article with the doctor. Sadly, the doctors that I have seen do not have a clue about thyroid toxic situations.

It seems to me that the answer is to have the thyroid gland removed and I would hope it will solve the problem. I don't want to take this drastic measure, yet. I would rather deal with being off the medication and see what happens. So far so good.

Please keep in touch and thank you for your support.

Regards,

Salva


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## Airmid

Thank you for such a nice reply. I'm sorry if anything I said came off harsh, I just worry if people start to look for more 'alternative' resources for help but it sounds like you just want to educate yourself fully and stay in a doctors care no matter how puzzled you make them. Don't worry, you aren't alone on that last part!

I thought you might find that story interesting. It sounded like me too when I first got diagnosed, including the tachycardia issues before my heart was damaged.. Then later on when I was put on hormone therapy for GYN issues my thyroid leveled out for a few years and I felt better without the thyroid meds then on them. I've had mixed symptoms ever since before I was diagnosed, and when the heart palpitations started in my late teens was probably either the start of my parathyroid or thyroid problems, perhaps both. I still have mixed symptoms with a thyroid that seems to want to stay hypo now even when my T4 swings in and out of normal. My Endo is actually really confused as to why my thyroid wont cooperate on 250 mcg and I blantly said I would not go higher with my thyroid still in. I still have times where I get really jittery and anxious, can't sit still and my heart speeds up even more and other times where just going to buy milk wipes me out.

I honestly wish they would do more research in to the antibodies and the autoimmune response in general for both Graves and Hashimotos. I just can't imagine that an over-reactive immune response along with loads of antibodies in our systems isn't having an effect on the rest of our bodies. They're starting to find connections with the antibodies to other issues but the research is in its infancy. It's an issue long ignored by doctors who instead just use it as a marker and then pretend they don't matter anymore. But personally, just knowing how the body works, makes me think that having constant chronic inflammation for years can't be a good thing.

On the lady with the violent reaction to thyroid meds, I'm assuming the Endo's checked to make sure no thyroid tissue regrew. There are blood markers for this and it is something patients with a TT for cancer are tested for. If she's on meds to help hyper symptoms is she still taking the thyroid medication or has she stopped? She's the only person outside of a few cancer patients that I've heard of that happening to, and the cancer patients had tissue that regrew.

Despite the fact I want the rest of my thyroid out, surgery is still a daunting proposal. If you do decide to go ahead with surgery, look for the best and someone who does a lot of thyroid surgeries per year. Along with someone who is supportive and has at least a decent bedside manner. While I have met a couple excellent doctors with a terrible bedside manner, I wouldn't necessarily want them to be at my bedside in the hospital! You do have some time to make this decision and it's good not to rush into it. What it comes down to in the end is what you can live with and how you want to live. Can you live the way you want with your thyroid? If yes, then waiting unless something more pressing comes up. If not, then take the steps so that you can live the way you want.


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## Salva

Airmid said:


> Thank you for such a nice reply. I'm sorry if anything I said came off harsh, I just worry if people start to look for more 'alternative' resources for help but it sounds like you just want to educate yourself fully and stay in a doctors care no matter how puzzled you make them. Don't worry, you aren't alone on that last part!
> 
> I thought you might find that story interesting. It sounded like me too when I first got diagnosed, including the tachycardia issues before my heart was damaged.. Then later on when I was put on hormone therapy for GYN issues my thyroid leveled out for a few years and I felt better without the thyroid meds then on them. I've had mixed symptoms ever since before I was diagnosed, and when the heart palpitations started in my late teens was probably either the start of my parathyroid or thyroid problems, perhaps both. I still have mixed symptoms with a thyroid that seems to want to stay hypo now even when my T4 swings in and out of normal. My Endo is actually really confused as to why my thyroid wont cooperate on 250 mcg and I blantly said I would not go higher with my thyroid still in. I still have times where I get really jittery and anxious, can't sit still and my heart speeds up even more and other times where just going to buy milk wipes me out.
> 
> I honestly wish they would do more research in to the antibodies and the autoimmune response in general for both Graves and Hashimotos. I just can't imagine that an over-reactive immune response along with loads of antibodies in our systems isn't having an effect on the rest of our bodies. They're starting to find connections with the antibodies to other issues but the research is in its infancy. It's an issue long ignored by doctors who instead just use it as a marker and then pretend they don't matter anymore. But personally, just knowing how the body works, makes me think that having constant chronic inflammation for years can't be a good thing.
> 
> On the lady with the violent reaction to thyroid meds, I'm assuming the Endo's checked to make sure no thyroid tissue regrew. There are blood markers for this and it is something patients with a TT for cancer are tested for. If she's on meds to help hyper symptoms is she still taking the thyroid medication or has she stopped? She's the only person outside of a few cancer patients that I've heard of that happening to, and the cancer patients had tissue that regrew.
> 
> Despite the fact I want the rest of my thyroid out, surgery is still a daunting proposal. If you do decide to go ahead with surgery, look for the best and someone who does a lot of thyroid surgeries per year. Along with someone who is supportive and has at least a decent bedside manner. While I have met a couple excellent doctors with a terrible bedside manner, I wouldn't necessarily want them to be at my bedside in the hospital! You do have some time to make this decision and it's good not to rush into it. What it comes down to in the end is what you can live with and how you want to live. Can you live the way you want with your thyroid? If yes, then waiting unless something more pressing comes up. If not, then take the steps so that you can live the way you want.


Hi,

It has been now over two weeks without the medication and I am still feeling fine...plenty of energy...so far so good. I will see what the integrative medicine doctors recommends and then go from there. I can't go back to the toxic world if I continue to feel fine. The side effects of toxicity are devastating and causing me other medical problems. It does not make sense. Eventually the toxic conditon is going to wreck my other organs.

Salva.


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## Airmid

Salva said:


> Hi,
> 
> It has been now over two weeks without the medication and I am still feeling fine...plenty of energy...so far so good. I will see what the integrative medicine doctors recommends and then go from there. I can't go back to the toxic world if I continue to feel fine. The side effects of toxicity are devastating and causing me other medical problems. It does not make sense. Eventually the toxic conditon is going to wreck my other organs.
> 
> Salva.


Just make sure to have a full thyroid panel done within the next little while to make sure everything okay. If you feel really bad with the thyroid meds and your thyroid is behaving for now, there's no reason the really change anything.

I do understand about the worry about damage to organs. I have issues with calcium and have just found out that over the years with the VA ignoring it, it has damaged my heart. It's not a situation I would wish on worse enemy.


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## Agho

I hope it's ok for me to join this discussion as I am also intolerant of thyroid meds. Mine is a long story but basically, after a subtotal thyroidectomy over 40 years ago I subsequently became hypo and was put on levothyroxine (Eltroxin brand, I'm in Ireland). I was perfectly well for 30+ years on 100mcg daily until early 2011 when I suddenly became toxic with all the hyper symptoms imaginable including weight loss which I could ill afford.

After trying to stabilise by reducing the dose gradually over several months I had to come off the meds totally in order to detox. I was off the tablets for 2 months and felt absolutely great but my TSH jumped to 36 and FT4 dropped to 10 (range 12-22) so was put back on Eltroxin again. Over the last 3 years I've tried over and over again to get up to a dose where my bloods are in normal range but every time I increase I get hyper symptoms. I am currently only taking 12.5mcg daily and my TSH is 10.4 with FT4 13.

I feel horrible. I have chest tightness, arm fatigue, tingling hands and feet, lightheaded, anxiety and muscle pain. I do not have Hashis, anti-TPO normal at 10 (range <34).

I have had a heart work-up done and all is normal. I had bowel exams which are normal. My morning cortisol bloods were in range at 638 (range 244 -727). I'm not overweight, can't put on an ounce and I'm not tired.

I'm at my wits end and neither my GP (general practitioner) nor my endocrinologist can give me any help other than "try to increase the medication" - which I obviously can't. I should add that here in Ireland it's virtually impossible to get natural thyroid medications prescribed as they are not licensed. I did once try a generic levothyroxine and felt worse. Eltroxin is the only T4 available and T3 is contra-indicated because of my cardiac symptoms according to my endo.

I would love to hear some success stories and how success was achieved in overcoming the intolerance.

Thank you for reading


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## Andros

Welcome to the board.

It would be my very serious recommendation that you get a radioactive uptake scan of your chest and neck. If even a tiny piece of thyroid tissue is left behind, it can and does grow back.

This could be causing your situation w/ the meds.

Let us know what you think of my suggestion.


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## Agho

thank you Andros, I asked my endo last year about the possibility of my thyroid having regrown and he prodded and poked my neck and said he could feel nothing unusual. Maybe I should go back and ask him outright for scan. Sadly, I've lost faith in the medical profession when it comes to thyroid issues.


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## Andros

Don't give up! We are here for you. I say, "Demand" a RAIU. You're the one paying.

You see? If you thought of this yourself; trust your instincts as your body is talking to you!


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## Danniswirl

Please get your Adrenals checked. You also need to check iron/ ferritin, Vit B12, And Vit D. If you cannot tolerate thyroid meds it is most likely due to these issues or you may have a Rt problem which means you are pooling and the thyroid med is not getting into your cells. It causes hyper symptoms when your actually hypo. It could be just floating around in your blood. When you do this bloodwork research on the stopthemadness.com website to see what the actual levels should be. Just "in range" will not be enough. We need higher levels in order to have a successful treatment.


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## Danniswirl

Sorry the website is stopthethyroidmadness.com. Many are familiar with it.


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## Agho

Thank you both for taking the time to reply.

I had a complete bloodwork done 2 weeks ago

Vit B12 came back 397 (range 120-650)

Ferritin 25 (range 11-307)

Haemoglobin 13.2 (12.3-15.3)

but WBC 4.3 (4.44-11.3) & RBC 4.33 (4.5-5.1)

Vit D not tested but I take supplement every day on the recommendation of my GP

Only other tests out of range was folate which was high >20 (3/1-20) & cholesterol 6.4 (3.5-5). My cholesterol was always well within range until all this madness started 3 years ago.

I have an appointment with my endo for next month so will ask about another uptake scan.

Danniswirl, I'm familiar with stopthethyroidmadness.com, lots of interesting information there as well as Mary Shoman's about.com site.

I really appreciate all the advice.


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## CA-Lynn

You might want to revisit the Vitamin D with your doctor. No proof that it helps.


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## jenny v

You might want to ask about your ferritin level, too, that's a little on the low side.


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## Swimmer

I wonder if there is dessicated thyroid for you to obtain under a physicians care in Ireland - or some place nearby. With your situation, I can't see taking something without being under a doctors care. But I did google "dessicated thyroid" "Ireland" together, and found that there are some other people in Europe/Ireland who have formed a group/groups. I don't know who they are, can't recommend them - but wonder if you might find an avenue for some more help there? If you google those terms together and don't find it, I'll be glad to post the links for you.


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## Agho

Again many thanks for all your replies.

CA-Lynn, co-incidentally I read an article in a local paper yesterday referring to a report in the Lancet medical journal that several studies suggest that supplementing Vit D is ineffective. Can't say I've noticed any significant difference since I've been on it.

jenny v, I realise ferritin is low so I'm looking at getting some supplements although my doctor thinks it's fine. However, I have had a bowel obstruction in the past so have to avoid anyyhing that interfere with bowel motility (sorry!).

Swimmer, I have asked both my GP and endo about desiccated thyroid and both have refused to discuss it as it is not licensed here in Ireland. It would be foolish to try self medicating under the circumstances. I live in hope that the law changes & it will be made available.

I am preparing a list of questions for my next endo visit and will include all suggestions made here.

I feel I'm in a "catch-22" situation whereby I have to increase medication in order to feel well but I can't do that as it makes me feel unwell!

Thank you all once again for your kind advice.


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## CA-Lynn

You know, there are many people with autoimmune diseases who must take some pretty dangerous drugs that have side effects that are very debilitating.....to the point where you wonder which is worse, the disease or the drug. For instance, did you know that Methotrexate, a cancer drug, is a first line treatment in Rheumatoid Arthritis? It makes people are nauseous as you can imagine and it never really goes away. But it stops further irreversible joint destruction. So in the end, patients have to choose their own poison: the side effects of the drugs, or [in the case of RA] not being able to walk.

It all comes down to choice.


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## Danniswirl

Hi all. I do agree with Airmid. Salva, I just wanted to let you know that high cortisol at night/evening usually indicates low cortisol in the daytime. That indicates cortisol dysregulation, which means adrenal fatigue. But I am happy you are feeling good and have energy now. The thyroid meds were most likely too stressful for your adrenals. The best way to test the adrenals and to know for sure is to get them tested by way of the saliva test (not sure if that's how you tested). And by the way most doctors know nothing about adrenal fatigue! This is just one part of the endocrine system that needs to be addressed. There is so much to the endocrine system. I wish you all good health.


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## Airmid

CA-Lynn said:


> You know, there are many people with autoimmune diseases who must take some pretty dangerous drugs that have side effects that are very debilitating.....to the point where you wonder which is worse, the disease or the drug. For instance, did you know that Methotrexate, a cancer drug, is a first line treatment in Rheumatoid Arthritis? It makes people are nauseous as you can imagine and it never really goes away. But it stops further irreversible joint destruction. So in the end, patients have to choose their own poison: the side effects of the drugs, or [in the case of RA] not being able to walk.
> 
> It all comes down to choice.


Why is it that autoimmune conditions seem to have hazardous medication, medication with terrible side effects or both?

Endometriosis can have some really nasty hormone treatments also. People just think of birth control, especially like the low dose kind. Nope. To try control it in more severe cases they use things to help block estrogen which helps keep it from spreading, keeps the symptoms down and lowers the damage it can do which includes infertility because of scarring and adhesions. Lupron, a drug that was originally FDA approved for the treatment of advanced prostate cancer, is one such drug used in suppression. I've seen it used directly after surgery and then you are switched onto a progesterone only birth control, usually at higher doses then what most women would take just for BC. The hormones have a fair amount of risks just in general, but you go through these regimines if things are bad and you want to have kids. Sometimes, you may not get to despite this.

OT: Last week my thyroid decided to throw a temper tantrum and hurt like a B*. I started to feel more and more wound up and lacking sleep. Took my thyroid meds on Thursday like normal and by late afternoon felt like I was losing my ever loving mind. Racing thoughts, and heart rate for that matter, sweaty, my hands trembling, my GI track did a 180 and things just went right through me. I went from feeling very fatigued with dry skin and looking like a textbook case of Hashi's to the complete opposite in just a couple of days. It didn't all happen in one day, though Thursday I was the most severe.

Needless to say I stopped taking all 250 mcg of Synthroid. I have been feeling better and better the further I get from the last dose and my Endo is telling me I can take as much as I tolerate, wanting me to start back at half my dose every other day. I might wait a while longer though as I finally have my heart rate back under control without having to increase my meds for that, which would have run the risk of crashing my BP and then having to fix that and I already take in enough sodium to feel like a salt lick. It's this terrible balance and sometimes it feels like I have so many balls in the air you aren't sure if you're going to catch them or what happens if one drops.


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## Sarah1945

Hi,

I know that this is an old thread...but I also struggle with the issue of intolerance to thyroid meds. It feels like a lose-lose. Whenever I increase my dose of Synthroid, I experience hyper symptoms. If I don't, I struggle with lingering hypo symptoms. Has anyone found a way to overcome these issues? I know that I am extremely sensitive to these meds.

Thanks!

Sarah


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## CA-Lynn

Can you give us an example of what the dose was and what the new dose is?


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## Sarah1945

Hi,

Thanks for your response.

It happens all the time to me....I react that way to even the tiniest increase i.e. 12.5 mcg per week...I have an extreme sensitivity to any increase or decrease and takes weeks to re-stabilize. So it feels like a lose-lose. Have others found a way to cope with this intolerance to thyroid medications?

I appreciate your help as it's a terrible dilemma.

Sarah


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## Andros

Sarah; have you ever had an ultra-sound of your thyroid? Also, what about your adrenals?

Welcome!


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## Sarah1945

Thanks for your response. Ultrasound is fine ....adrenals, too.

Best,

Sarah


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## Perry_D

Hello, sorry that the meds make you sick, unfortunately I'm going through the same problem. I've taken Armour, Tirosint, and I am currently on Synthroid - which makes me feel horrible once I take it.

May I ask what are your symptoms?


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