# Frustrated and Need Advice: TLDR Several tests show high TSH.. But every time i try meds i end up in the ER 10x Worse



## massa (Nov 27, 2017)

A few months ago DR does normal bloodwork and i came back that i have a high TSH level so said DR requests test again and again it shows the same results.. Told Dr i react violently to Synthroid and that my last Dr told me to avoid it all costs.. Current Dr looks at me like i am crazy and convinces me to try again which regretfully i did and like clock work i end up in the hospital.. Call my Dr again and say what happened and mention that I am immediately stopping and we need to figure something else out.. Dr responds wait 3 weeks have another blood test and lets go from there.. So this past Friday i made my way to the LAB and 4 hours later the DR calls me back and says he is upping my dose to 75mcg from 50mcg.. At this point i am at a complete loss for words as to his blatant disregard of said ER visit and his insistence on pushing medication he knows causes me harm.. So that brings me what i am here to get some ideas about..

1. why if i have high TSH does my body reject any synthetic or natural replacement i have ever taken (they all result in me going to the ER like clockwork) what else could be causing this to happen? and has anyone else not been able to tolerate the meds?

2. i am going to fire this DR first thing Monday morning but what i am torn about is rather to turn him into the state board do you folks think this would be going to far?

With that said I am at a complete loss as what to do about these thyroid issues, why would bloodwork come back showing high TSH, only to have my body reject any attempt at resolving it. Honestly it makes ZERO sense.. I wish i was kidding as this is not a fun position to be in.. I know this is not a place for professional advice, and i'm not here for that. My main reason for this post is to see if anyone else has issues with being able to take the meds, and to see if anyone might know what else might cause such a bad reaction to t4 or t3 replacement therapy.


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## Lovlkn (Dec 20, 2009)

What reactions do you experience?

What are your lab results with the ranges please?

You may simply be having an allergic reaction to a filler in Synthroid. There are
Other options if you are indeed hypothyroid.


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## joplin1975 (Jul 21, 2011)

Make sure they test for TSI. If you have it, its hard to take any kind of thyroid meds.


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## massa (Nov 27, 2017)

Lovlkn said:


> What reactions do you experience?
> What are your lab results with the ranges please?
> You may simply be having an allergic reaction to a filler in Synthroid. There are
> Other options if you are indeed hypothyroid.


Heart beats extremely fast feels like im having a heart attack, palpitations, insomnia, anxiety, sweats and a few tmi.. i spent two days in the hospital after this last time. dr hasn't given labs to me but i am demanding them at tomorrow's visit and that he starts looking into the why.. because somethings wrong and i refuse put my self in the hospital again.


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## massa (Nov 27, 2017)

if it helps i just got off of a 5 day 20mg a day prednisone about 2 and half weeks ago.. i have also been under an un godly ammount of stress the past few months .. i dunno if this has anything to do with it but i wanted to make sure i mentioned it.


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## massa (Nov 27, 2017)

Lab Results

1. 7/27/17 TSH: 5.04

2. 10/18/17 TSH: 4.75

3. 11/24/17 TSH: 4.89

4. 10/7/2014 TSH: 4.92


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## Lovlkn (Dec 20, 2009)

Your TSH results show that you are quite hypothyroid and definitely need to be on some sort of thyroid hormone replacement.

I would suggest another brand or possibly a combination med that has both T4 and T3.

Have they ever run the FT-4 and FT-3 lab's?


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## massa (Nov 27, 2017)

Well i had to get nasty with them yesterday but they are doing the labs to find out the cause .. As for hormone replacement that will not happen been there done that and i cannot keep spending 1500+ at the ER i already owe 10k from last time.. so yea not gonna happen.. we are all at a loss as to why..


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## Lovlkn (Dec 20, 2009)

Have you had an ultrasound of your thyroid?

Have they run TSI , TPO or thyroglobulin antibodies?


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## massa (Nov 27, 2017)

Lovlkn said:


> Have you had an ultrasound of your thyroid?
> 
> Have they run TSI , TPO or thyroglobulin antibodies?


no on ultrasound, going for labs soon.. Also i would like to mention the old standard for tsh used to be 5.20 with 5 being the highend of normal.. Not sure when this changed or why but i saw it on one of the tests..


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## massa (Nov 27, 2017)

I have results and of course i was right there is something wrong.. i am so livid with my physician over this but that's not the point of this post but lets just say i am filing a complaint with the medical board.. TSH as of 12/6/17 : 4.2 (it's odd its fluctuating so much see above) Elevated TPO ( they are mailing me the labs will update with exact number asap).. Sending me to endo.. What does a high TPO mean and is it something that's concerning? I would also like add that i am NOT taking any medication as it makes me feel horrible with that said why would TSH fluctuate so much if i am not taking anything any ideas?


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## Lovlkn (Dec 20, 2009)

If you have a high TPO that could be the reason for the fluctuation.


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## joplin1975 (Jul 21, 2011)

Your TSH is actually not fluctuating that much. You'll never get the same result and yours is high 4s and low 5s. Which, yes, does show hypo.

But any lab variables are probably related to TPO. You should really, really get TSI tested. If you have it, it will be very difficult to stabilize on thyroid meds.


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## creepingdeath (Apr 6, 2014)

Your symptoms when taking thyroid hormone are of extreme hyper ones.
TSH will fluctuate with other medical problems not just thyroid.
TSH is a pituitary hormone and doesn't just change do to your thyroid alone.

Try looking into another cause for what caused your original symptoms if you had any.

If you had no symptoms why take the hormone?

TPO means antibodies are attacking your thyroid.

It does not necessarily mean you need hormone therapy or ever will.

"Symptoms are more important than any lab tests"


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## massa (Nov 27, 2017)

joplin1975 said:


> Your TSH is actually not fluctuating that much. You'll never get the same result and yours is high 4s and low 5s. Which, yes, does show hypo.
> 
> But any lab variables are probably related to TPO. You should really, really get TSI tested. If you have it, it will be very difficult to stabilize on thyroid meds.


tsi is normal


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## joplin1975 (Jul 21, 2011)

Is TSI = 0 or within normal ranges. Two totally different things.

The presence of TSI, even if it is within normal ranges, will make everything wacky and you will not be able to tolerate meds. Speaking from experience.


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## massa (Nov 27, 2017)

12-06-17 Labs

TSH: 4.22 (normal range 0.4 - 4.0)
Thyroid Peroxidase (TPO) Antibodies: 714.6 iu/ml (norm range less then 20 iu/ml)
Thyroglobulin: 1.9 iu/ml (normal range less than 20 iu/ml)
Free T4: 1.20 ng/dl (normal range 0.58 - 1.64 ng/dL)
T3: 128 ng/dl (normal range 100 to 200 nanograms per deciliter (ng/dL)
Free T3 3.3 pg/ml (normal range 3.5 to 7.8)

hope this gives a clearer picture.


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## massa (Nov 27, 2017)

joplin1975 said:


> Is TSI = 0 or within normal ranges. Two totally different things.
> 
> The presence of TSI, even if it is within normal ranges, will make everything wacky and you will not be able to tolerate meds. Speaking from experience.


posted most recent labs with all 7 lab results


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## massa (Nov 27, 2017)

if it helps the 11/24 tsh test was done a few days after a course of prednisone..


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## joplin1975 (Jul 21, 2011)

I just see Tg and TPO. No TSI?


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## massa (Nov 27, 2017)

joplin1975 said:


> I just see Tg and TPO. No TSI?


you are correct i got confused thinking tg was tsi.. but i remember when i asked him about it him saying because im hypo and not hyper i didn't need it. my total bad.


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## jenny v (May 6, 2012)

Could you edit your post to include the ranges for each lab result?


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## massa (Nov 27, 2017)

jenny v said:


> Could you edit your post to include the ranges for each lab result?


done


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## jenny v (May 6, 2012)

Your TSH and Free T3 are pretty hypo and your TPO Ab is really high, all indicating issues. I would demand a TSI test to see if you've got that going on, too, which makes taking any thyroid meds hard. Is Synthroid the only thyroid med you've tried?


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## massa (Nov 27, 2017)

jenny v said:


> Your TSH and Free T3 are pretty hypo and your TPO Ab is really high, all indicating issues. I would demand a TSI test to see if you've got that going on, too, which makes taking any thyroid meds hard. Is Synthroid the only thyroid med you've tried?


as soon as i get back from the holidays i plan on visiting an endocrinologist at oregon health and sciences.. till then i quite honestly don't feel any symptoms... and am not all that bothered with it. No diabetes.. No other problems. Also just checked my chart and it says both t3 and free t3 are within range. the only two that aren't are tsh and the tpo. Regardless i'll wait to see what endo says.. as for meds i'd rather die then take them again.. my experiences have been that poor..


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## creepingdeath (Apr 6, 2014)

If no symptoms and you would rather die than take thyroid meds why see a doctor?

Just a waste of time and money.

I have high TSI and I can tolerate natural desiccated thyroid.

But like you I would rather die than take synthetic's...............


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## massa (Nov 27, 2017)

creepingdeath said:


> If no symptoms and you would rather die than take thyroid meds why see a doctor?
> Just a waste of time and money.
> 
> I have high TSI and I can tolerate natural desiccated thyroid.
> But like you I would rather die than take synthetic's...............


not entirely anti meds but synthroid makes me feel like death.. and my pcp dr is a joke.. i have a feeling once the auto immune part gets under control, the later might go better. hince why i have a referal to the endocrinologist at ohsu.. The only real symptom i feel is minor thyroid pain but even that is off and on and not entirely bothersome.


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## creepingdeath (Apr 6, 2014)

Joke??? HAAA!!!! - wait till you meet this Endo....

MY PCP doctor saved my Life by letting me at least try something other than Levothyroxine or other synthetic's.....

If I never had symptoms in the first place "even with an enlarged thyroid" I would have never taken anything.

Armour Thyroid is a blessing but it isn't perfect and I by no means feel like I did before all this started 7 years ago.

GOOD LUCK TO YOU


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## massa (Nov 27, 2017)

creepingdeath said:


> Joke??? HAAA!!!! - wait till you meet this Endo....
> MY PCP doctor saved my Life by letting me at least try something other than Levothyroxine or other synthetic's.....
> If I never had symptoms in the first place "even with an enlarged thyroid" I would have never taken anything.
> Armour Thyroid is a blessing but it isn't perfect and I by no means feel like I did before all this started 7 years ago.
> ...


first off he is a joke and the state seems to agree with me #micdrop regardless when it comes to health care OHSU is night and day compared to what is offered in my area its like comparing a pinto to a bentley.. there is no comparison.. i'll take there opinion over my current dr in a new york minute.. In the end all aside i just want to take the correct course of action, and that means the immune issues (which given my tpo there cleary is one) need to be diagnosed and addressed before we even begin to start with hormones. i appreciate everyone's response and help and will keep everyone updated on what happens.. might be a month or two though as it takes a bit to get in..


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