# Hashimoto's Diagnosis & Med Struggles



## jleehaus70 (May 2, 2012)

Hello,
I am a 41 yr. old male who was just diagnosed with Hashimoto's. My endo prescribed Synthroid 50 mcg but it gave me anxiety. She had me cut it to 25 mcg every other day, but even that was too much, so I cut it on my own to 12.5 every other day. The night after I take the 12.5 (always @ 4 am) I get a rapid heartbeat & palpitations, and the following morning and day I feel awful; this has been going on for 3.5 weeks. I was supposed to take the 12.5 this morning, but I can't bring myself to take it as today for some reason I still feel rotten/anxious/exhausted (the 4 am doom express hit last night, off schedule).

I wonder 3 things: can I get anywhere taking this miniscule amount of Synthroid? Will I ever adapt to it and be able to take more? Will it ever make me feel well? I feel like I could fire myself back up to push through the hell if I could believe it would get better, but I must admit, I'm getting psychologically down and feeling like I don't want to even take Synthroid anymore. I would be willing to endure nearly anything if I could believe it would ultimately get me feeling good again. Not even sure what I'm asking, just hoping something good happens with this at some point.


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## lainey (Aug 26, 2010)

What were your original labs with ranges? TSH, free T4 and free T3.


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## jleehaus70 (May 2, 2012)

I do not know. My doctor offered me the lab results sheet but I didn't take it, I guess I should have. I will call and try to get a copy faxed to me tomorrow.


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## CA-Lynn (Apr 29, 2010)

You're walking a dangerous and slippery slope adjusting your own medication.

Be careful. And please consult your endocrinologist.


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## Andros (Aug 26, 2009)

jleehaus70 said:


> Hello,
> I am a 41 yr. old male who was just diagnosed with Hashimoto's. My endo prescribed Synthroid 50 mcg but it gave me anxiety. She had me cut it to 25 mcg every other day, but even that was too much, so I cut it on my own to 12.5 every other day. The night after I take the 12.5 (always @ 4 am) I get a rapid heartbeat & palpitations, and the following morning and day I feel awful; this has been going on for 3.5 weeks. I was supposed to take the 12.5 this morning, but I can't bring myself to take it as today for some reason I still feel rotten/anxious/exhausted (the 4 am doom express hit last night, off schedule).
> 
> I wonder 3 things: can I get anywhere taking this miniscule amount of Synthroid? Will I ever adapt to it and be able to take more? Will it ever make me feel well? I feel like I could fire myself back up to push through the hell if I could believe it would get better, but I must admit, I'm getting psychologically down and feeling like I don't want to even take Synthroid anymore. I would be willing to endure nearly anything if I could believe it would ultimately get me feeling good again. Not even sure what I'm asking, just hoping something good happens with this at some point.












How were you diagnosed w/Hashimoto's? Do you have lab results and the ranges that we could have a look at?

Please list all tests that you have had w/ the ranges.

Hopefully your doc did some of the below?

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

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

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

And, what symptoms took you to the doctor in the first place. Inquiring minds need to know!


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## jleehaus70 (May 2, 2012)

Hello,

I built up to 12.5 mcg per day of Synthroid by taking the 12.5 dose every other day, 2 days on one off, three on, etc. I was was feeling significantly better, but after day 25 of the 12.5 dose I had a return of the Synthroid side effects--insomnia and heart racing/palpitating/PVCs. I am going to talk with my endo, who approved my adjusting the dose in the way I described. I have gone back to 12.5 mcgs every other day for now until I can talk with my doc again tomorrow. I will get a copy of the labs so I can post them here. I'm just wondering why the return of the side effects and generally feeling worse physically after things seemed to be improving.



> And, what symptoms took you to the doctor in the first place. Inquiring minds need to know!


My symptoms were constantly being tired no matter how much I slept, yellowish skin, cold intolerance (and I was always the one cranking the AC in the past) dry skin, dry eyes to the point my eyes began having serious problems, bloated stomach/couldn't tolerate eating much food, lost 25 pounds which was muscle as I was always working out, and exercise intolerance (nauseous during or after, heart pounding even when doing light workouts or warm-ups).


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## Andros (Aug 26, 2009)

jleehaus70 said:


> Hello,
> 
> I built up to 12.5 mcg per day of Synthroid by taking the 12.5 dose every other day, 2 days on one off, three on, etc. I was was feeling significantly better, but after day 25 of the 12.5 dose I had a return of the Synthroid side effects--insomnia and heart racing/palpitating/PVCs. I am going to talk with my endo, who approved my adjusting the dose in the way I described. I have gone back to 12.5 mcgs every other day for now until I can talk with my doc again tomorrow. I will get a copy of the labs so I can post them here. I'm just wondering why the return of the side effects and generally feeling worse physically after things seemed to be improving.
> 
> My symptoms were constantly being tired no matter how much I slept, yellowish skin, cold intolerance (and I was always the one cranking the AC in the past) dry skin, dry eyes to the point my eyes began having serious problems, bloated stomach/couldn't tolerate eating much food, lost 25 pounds which was muscle as I was always working out, and exercise intolerance (nauseous during or after, heart pounding even when doing light workouts or warm-ups).


Sounds to me like you are hyperthyroid, not hypothyroid.

Have you had any of the tests listed below?

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

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

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

On what basis/criteria did the doctor arrive at the conclusion that you have Hashimoto's?

If you have any recent lab results to share w/us, be sure to include the ranges.!


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## jleehaus70 (May 2, 2012)

Thanks you for the response Andros. 


> Sounds to me like you are hyperthyroid, not hypothyroid.


I feel like I have symptoms of both, especially now that I'm on Synthroid. I asked why I was losing weight with a hypothyroid condition, and my endo said that although most gain weight with hypo, some people with Hashis lose weight.


> Have you had any of the tests listed below?


I don't remember, but I will do everything possible to get the lab results tomorrow and answer this question (and post the other numbers).


> On what basis/criteria did the doctor arrive at the conclusion that you have Hashimoto's?


I really don't remember, I'll have to ask her or maybe the lab results will help with this. I remember my endo said some of the thyroid numbers were low and the ultrasound of my thyroid showed that it was enlarged quite a bit although there were no nodules. Before selecting my current endocrinologist, I did some research on these forums and found an endo that several different sources recommended. She is focused on symptoms, not just lab results. Before seeing this endo, my regular doctor said my thyroid numbers were fine and wanted to give me an antidepressant. I knew I wasn't imagining losing weight or my eyes being destroyed each night so I read a lot of posts and found my current endo.


> If you have any recent lab results to share w/us, be sure to include the ranges.!


I will as soon as possible. I'm glad this forum is here. I've never been sick before and on my bad days I am a quasi-invalid. I used to run 20-40 miles per week AND lift weights for an hour 4-5 times per week so I am not considered to be a baby about physical problems. At least on here I can talk about this and people know what the heck I am experiencing, and that is comforting because I, like many on here, am fighting a psychological battle because I do not want to lose hope.


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## joplin1975 (Jul 21, 2011)

I'm on my phone, so apologies for the brevity, but this all sounds familiar. Get the TSI test. Ask for an ultrasound. I was on synthroid for a week before my biopsy results came back and i could not tolerate it. I, too, was a big runner...lots of sweating, jittery, etc.


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## Andros (Aug 26, 2009)

jleehaus70 said:


> Thanks you for the response Andros.
> 
> I feel like I have symptoms of both, especially now that I'm on Synthroid. I asked why I was losing weight with a hypothyroid condition, and my endo said that although most gain weight with hypo, some people with Hashis lose weight.
> 
> ...


Don't lose hope. I have been back in the gym for years and do 4 to 6 miles of cardio 5 days a week in addition to weight lifting. And I am a 69 year old female.

There is hope; believe me.

Here is some credible info on Hashimoto's/Thyroiditis (one and the same.) Read through it and see if you agree that this is what you have. I don't. LOL!

http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/


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## Octavia (Aug 1, 2011)

andros said:


> don't lose hope. I have been back in the gym for years and do 4 to 6 miles of cardio 5 days a week in addition to weight lifting. And i am a 69 year old female.


you go girl!!!!!!


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## Andros (Aug 26, 2009)

Octavia said:


> you go girl!!!!!!


<blush> Never say never! That's my motto. If you tell me I can't, you can consider it done!


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## Brucergoldberg (May 23, 2011)

Its important that you post your labs and the tests you have had done in order to have us help you. If you are very hypo and having these symptoms, there is a chance you just need to push through for about a month and endure the anxiety (get something to help for it) as this will eventually go away. If you are hyper and taking hormone, thats obviously the reason right there. 12.5 is a very small dose. I can tell you i didnt do well on any type of hormone that was commercially made. I am on a slow release compound and doing better but still have some issues. The anxiety is horrid i have to agree.

It is also possible that you are at the point where your antibodies are high and basically the troops are marching forward to destroy and kill your thyroid right now as we are talking. In that case, you have a battle on your hands.

I decided to have my thyroid removed as i could not do any conventional treatment and it ended up causing a heck of a lot of neck pain. I am doing much better with no thyroid, but i can totally relate to the anxiety. Please please post your labs and the ranges for these labs as well so we can help you.


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## jleehaus70 (May 2, 2012)

Thanks for the replies everyone, I will contact my doctor tomorrow morning to get the labs and I will post them.


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## sjmjuly (Mar 23, 2012)

Been there done that. You sound EXACTLY like me when I was first diagnosed. I had more hyper symptoms than hypo in the begining, and that's usually how it starts with hashi's. Pure hell until you get an understanding of how it works.
Get your lab results from the doctor and post them here along with the lab ranges. That will help the people that will give you some advice. Second, DO EVERYTHING YOU CAN TO EDUCATE YOURSELF ABOUT THIS DISEASE! It will only help you in the end. Find out if you have food alergies as Hashi's is an autoimmune disorder and sometimes changing your diet will help alot. I was diagnosed in March and have been through hell. I went gluten free and that helped calm my immune system which in turn cut down on the thyroid attacks. That cut down the hyper symptoms.
I take NatureThroid which is a dessicated thyroid med - not a synthetic like Synthroid. I first tried a synthetic and had the same reaction you did. I just can't take a synthetic T4 only drug. You may that you can't either. 
It does take time to figure this out and you will have good and bad days. I started taking only 8mcgs of my medication and slowly bumped it up. I am up to 3/4 of a grain (about 48mcgs) and have been there for awhile and feeling pretty good. I hope you have a good doctor that doesn't base everything on your TSH level. You really need one that goes by your Free T3 & Free T4 AND how you are feeling. Hang in there. It does get better and there are alot of people here that have been through it before.


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## jleehaus70 (May 2, 2012)

Thanks for the optimism, I need that right now.

The woman at my endo's office gave me my labs, but I cannot find the ones listed by Andros in a previous post: TSI, TPO, TBII,ANA, TSH, Free T4. I am pretty sure these tests were done because now that I hear these names, I recall my endo explaining them to me. The only ones I could find were:
Free T3: 2.61,
ThyroperoxAb: 37.6 Free 
Thyroxine: .81
These were taken 4/2/12.



> Hashi's is an autoimmune disorder and sometimes changing your diet will help alot.


I went on the primal diet in February and it cleared up most of my stomach symptoms within a week. It is no sugar, gluten, processed foods, or grains (corn, wheat, rice, etc.). I will call the office back and try to figure out where these other lab results are.


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## sjmjuly (Mar 23, 2012)

jleehaus70 said:


> Thanks for the optimism, I need that right now.
> 
> The woman at my endo's office gave me my labs, but I cannot find the ones listed by Andros in a previous post: TSI, TPO, TBII,ANA, TSH, Free T4. I am pretty sure these tests were done because now that I hear these names, I recall my endo explaining them to me. The only ones I could find were:
> Free T3: 2.61,
> ...


What are the lab ranges?
Yours look similar to mine when I was first diagnosed. I can tell you that when your antibodies are on the rampage and your T3 is low, you will feel like crap. At least I did. My T3 is better now (3.5 range: 2.5 - 6.0) but I still have a ways to go. Most here will tell you that you feel better when you are 75% of the ranges. 
They ran one of the antibodies test - the ThyroperoxAb: 37.6. This is fairly low, thankfully. I have seen others with it in the 1,000's. They should also do a TPO like Andros stated.


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## jleehaus70 (May 2, 2012)

> What are the lab ranges?


To the right of the number it says Ref Range--I'm assuming that's what you mean? For Free Thyroxine (.81) it is .58-1.64, and for Free T3 (2.61) it is 2.39-6.79. Is this what you are asking about?


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## lizzm (May 21, 2012)

Long story short... In my experience my PCP upped my dose of Levothyroxoine from 50mcg to 75mcg and I was having a lot of the same symptoms like you the insomnia, anxiety, heart palpitations but I was still really tired and it didn't matter how much I slept. Got sent to an Endo who put me on brand Levoxyl bumped it up to 88mcg then to 100mcg. I felt a little better but still tired, muscle and bone aches, dry skin, etc., etc. When the Endo told me she wanted to lower my dose back to 88mcg I found a new dr. He ran a lot of tests 15 I think. Anyways my Reverse T3 was very high he put me on a compounded T3 only med and almost all of my symptoms are gone. Some people have a hard time with the T4 to T3 conversion like me. The dr. told me the more T4 I was putting in my body the higher my T3 was getting and that's why my symptoms were so bad and I wasn't getting any relief. So another test to ask your Endo about: Reverse T3

I hope you find some relief soon


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## Andros (Aug 26, 2009)

jleehaus70 said:


> To the right of the number it says Ref Range--I'm assuming that's what you mean? For Free Thyroxine (.81) it is .58-1.64, and for Free T3 (2.61) it is 2.39-6.79. Is this what you are asking about?


Yes; thank you! Different labs use different ranges!

So............here is what I personally suggest due to the fact that binding, blocking and stimulating antibodies to the receptor sites can offset the traditional lab results (TSH, FT3 and FT4.)

Get some of these tests if not all of them; that is what I suggest!

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

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

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


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## jleehaus70 (May 2, 2012)

Thanks for all the replies, I appreciate it. It seems like several of you have been through these issues as well. Perhaps I am one of those who cannot tolerate Synthroid.

I talked with my endo and she said I could try Armour if I would like to switch. I am hesitant to do so because even though the Synthroid is hard for me to tolerate, on the days where I do not have the side effects, of which there were many (about 30-40 days with few/no side effects prior to a few days ago), I was feeling WAY better. Not back to normal or anything, but well enough that I wasn't worried about making it in to work, well enough that I didn't need the school security van to drive me the 125 yards from the front gate to the door, as happened one day before I was diagnosed.

My endo also said that oftentimes patients do not feel any effects, neither good nor bad, from Synthroid for 12 weeks. I have been on Synthroid for just over 12 weeks, but I was only taking 12.5 mcg every other day for almost four weeks, so maybe my recently increased side effects are just a phase that I can push through? I just do not want to give up on the Synthroid just yet, especially since it seems to have had a beneficial effect despite the side effects.


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## sjmjuly (Mar 23, 2012)

I am one of those people who cannot take a synthetic thyroid med. I am on Naturethroid which is like Armour. I was on Levothroid and felt awful - ended up in the ER on the 4th day of taking it. I switched to Naturethroid and NEVER had a bad reaction or side effect, AND i litterally felt better in just a few days. I started out low and built up to 3/4 a grain which equates to about 48mcgs. I have been on that amount for over a month now and doing great. Hashi's is a pain in the butt and it takes awhile to get a hold of it. I still have "thyroid attacks" now and then and they usually happen when I have accidentally consumed gluten. It sends my antibodies into overdrive. But at least I know what's happening now and just have to ride out the attack. They usually last 20 minutes to an hour and then go away. At least they are few and far between. Hang in there. It will get better.


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## joplin1975 (Jul 21, 2011)

You might do well on Armour or similar drugs. I honestly have no idea. I do think if you make the switch, tread carefully and be very self aware. As I mentioned, prior to surgery, I had a very bad reaction to synthroid and thought I was losing my mind (heart palps, anxiety, no sleep etc.). I don't know this for a fact, but my gut tells me that if I ever dabbled in any medication with T3, I would react poorly. I wouldn't be saying this if you were on synthroid and felt totally sluggish no matter the dose - its the people who feel overly revved up on low doses of synthroid that I think could get in trouble (again, *could*...all just guesses).


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