# Extremly Frustrated



## Airmid (Apr 24, 2013)

Alright I am now officially taking more thyroid hormone then those on this board without a thyroid are taking.

I went and saw the ENT who not only didn't give me a damn good reason as to having surgery in the VA system again (first VA surgey resulted in PTSD from extreme lack of care that I still have not have recovered from), to make matters worse, my Endo cannot meet my eyes when we talk about my recurrent cancer risk.

Instead he has elevated my dose of Sythroid from 200 to 250 mcg. Yeah yall read that right. I've had major headaches along with other symptoms from this sudden increase dosage. I asked and obtained permission to take it in two dosages during the day. If the headaches do not break I am going to ask my clinical pharmacologist about this extreme dosage when I see her on Thursday to change my pain management med at my request (I want to change to methadone for longer lasting relief. My thyroid's up and downs also seem to co-incite with the rise and fall of my pain levels).

I don't know what to do anymore. My Thyroid last week swung into the 7's, the lowest it's been since this whole mess has been found out 8 years ago. It was the most managable pain day I've had in years when that blood sample was taken. I don't expect it to stay that way, especially with the development of heart issues.

I don't know, I just need a hug...


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## Andros (Aug 26, 2009)

Airmid said:


> Alright I am now officially taking more thyroid hormone then those on this board without a thyroid are taking.
> 
> I went and saw the ENT who not only didn't give me a damn good reason as to having surgery in the VA system again (first VA surgey resulted in PTSD from extreme lack of care that I still have not have recovered from), to make matters worse, my Endo cannot meet my eyes when we talk about my recurrent cancer risk.
> 
> ...




Yowza!! That is a lot of Synthroid! Is your doc running your FREE T3 lab?

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3

If we could see your most recent TSH, FREE T3 and FREE T4 lab results with the ranges, that would help................a lot!

Also, have you had antibodies' testing and an ultra-sound of your thyroid?

Do you "have" to go to VA or can you go out of pocket?

If your FREE T3 is not where it should be, you can indeed be in a lot of pain.


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## Octavia (Aug 1, 2011)

WHOA...STOP THE PRESSES!!!!

That is WWWAAAAAYYYYY to much of an increase!!!!

I assume you're saying that your TSH was 7ish, is that correct?

My guess is that ONE 250 microgram pill per week, along with your 200 microgram pills the other six days would do the trick. Can you call this doctor back and re-negotiate? That jump in dosage is far, far, far too much.


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## Octavia (Aug 1, 2011)

Whoops....and here's your hug...

:hugs:


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## jenny v (May 6, 2012)

Holy crap, that's a lot of Synthroid!! I second Andros, are you totally stuck with the VA or is there another clinic or other doctor you could see? It seems like the VA just has you spinning in circles.

Here's a hug from me, too: hugs3


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## Airmid (Apr 24, 2013)

> If we could see your most recent TSH, FREE T3 and FREE T4 lab results with the ranges, that would help................a lot!
> 
> Also, have you had antibodies' testing and an ultra-sound of your thyroid?
> 
> ...


I'll have to see if my free T4 last tests have been uploaded. From my understanding it was barely within normal. Sometimes it can take a bit for me to be able to see newer lab results.

My anti-bodies are high, recently measured during a FNA but I honestly don't know the exact numbers. I've asked and all I've gotten from him is 'quite high'. lol That's an acurate number right there. Free T3 hasn't been measured in months and my TSH was 'just under 8' about a week and a half ago.

There really aren't a lot of Endo's in my area, even though it's not a small area. Even if I could afford to go out of pocket it still would be hard finding someone who know's Hashi's.

My biggest fear is hearing that dreaded 'C' word again in regards to my thyroid.


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## Airmid (Apr 24, 2013)

Thank you for the hugs 



Octavia said:


> WHOA...STOP THE PRESSES!!!!
> 
> That is WWWAAAAAYYYYY to much of an increase!!!!
> 
> ...


MWHAHAHA I wish he was doing that. No he now insists on 250 mcg per day. I haven't kept food down in about 48 hours now, I've had headaches with the effects of a Migraine (one of the nifty things my Thyroid has done to me is cause Migraines during my periods for the past 10 months), but they aren't Migraines. I'm nauseous, and I have this neat tingling in my hands and feet. Usually I have that in my left foot anyways due to a nerve injury in my back, but hands and both feet is a new one.

I am going back to my old dose tomorrow morning. I'm literally entering withdrawal since I can't keep my pain med down which as you can imagine isn't helping anything.

I meet with a Clinical Pharmacologist tomorrow so I'll tell her what's up and why I don't want to continue at this dose, regardless if I'm taking it one day or seven per week. And quite frankly if he doesn't like that then he can bite me. I've already asked for another opinion.

*EDIT* And yes, I have straight up notified his office that I'm doing really poorly. The only thing that has changed for me is this dose of thyroid. I thought it was quite a leap too.


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## Octavia (Aug 1, 2011)

Well, I suspect your clinical pharmacologist will have a heart attack (figuratively, of course) when he/she sees this dramatic dosage change.

Please keep us posted. I'm curious to see how this turns out.

Best wishes for a great appointment tomorrow.


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## Airmid (Apr 24, 2013)

Octavia said:


> Well, I suspect your clinical pharmacologist will have a heart attack (figuratively, of course) when he/she sees this dramatic dosage change.
> 
> Please keep us posted. I'm curious to see how this turns out.
> 
> Best wishes for a great appointment tomorrow.


Lol seeing that I about had a heart attack when he suggested that dose, after over half a year of refusing to increase the dose (not to mention the ER nurses and doctors who had to treat me for my tachycardia/near fainting saying "You're taking HOW MUCH?" before the dosage increase), I bet I'll get an ear full.

Thank you for your thoughts. I think one of the hardest things of being sick, regardless of what it is, is that after a while you begin to feel you are alone. Like it's all in your head. My body is screaming at them that something is wrong yet everyone is deaf. Reading responses not only to my thread but other's stories reminds me that I am not alone and I need to keep fighting.


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## Jonlyn (Jul 22, 2013)

I am curious to which VA you are going to.. I too am in the VA system ,, Asheville, NC
I have only one test result of significance..
Thyroid Peroxidase AB Anti-TPO Abs range <35 my results: 620
Found this out on my heath vet page.. emailed my pcp ... asking for info.. 5 days ago...
They found a syrinx in my spinal cord in May... I get my brain and spinal cord MRI in August.. 
Look forward to hearing from you
Thank you for your service
USAF 1982-1986


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## hashimotocoaster (Mar 22, 2013)

That's enough Synthroid for a small horse!

Sometimes research hospitals at universities will provide financial assistance--something to look into if the VA isn't going to help you. Good luck at your appointment.


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## Airmid (Apr 24, 2013)

Jonlyn said:


> I am curious to which VA you are going to.. I too am in the VA system ,, Asheville, NC
> I have only one test result of significance..
> Thyroid Peroxidase AB Anti-TPO Abs range <35 my results: 620
> Found this out on my heath vet page.. emailed my pcp ... asking for info.. 5 days ago...
> ...


Oh Dear God Almighty, Asheville VA...*shudder*. Seriously, the second to worse care I've ever received, the worse was Salisbury VA. (I lived in Marion.) I'm back in Oregon under Roseberg and Portland Regional and I hope they have cleaned up the NC VA's since I left. Asheville is the reason I cannot take NSAIDs now (long story), and Salisbury...well let's leave it unsaid.

It doesn't surprise me, sadly, that Asheville hasn't gotten back to you. You're anti-bodies are way up there. The best I can tell you to do is wrangle the patient advocate, and if they tow the company line start beating down the door yourself. I have co-morbid conditions and was so beaten down I thought at that time I was literally going insane from pain. Turns out I wasn't.

High Five for the USAF and never ever lose sight of the fact that you are your own best advocate.


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## Airmid (Apr 24, 2013)

hashimotocoaster said:


> That's enough Synthroid for a small horse!
> 
> Sometimes research hospitals at universities will provide financial assistance--something to look into if the VA isn't going to help you. Good luck at your appointment.


The non-profit hospital locally has a program for those like myself who cannot pay out of pocket for care they desperately need. They have taken very good care of me in the past, still do as a matter of fact as I yell at the VA to pay them for delivering the care the VA is unable to provide. It's such a pita of paper work, but I know that having another surgery means I will have to go outside the VA because of what they did to me during the first one (non-thyroid related). I'd just kind of like my doctors to be on the same page before that happens. Wishful thinking I know.

Thank you for your kind wishes.


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## Jonlyn (Jul 22, 2013)

I have been going to the Asheville VA since 1989... hhhmmm .. maybe i should ck into the psych ward. 
But, really, they took very good care of me last March.. I thought I had the flu. went to ER ... tests revealed mulitple blood clots / lungs! off coumadin just last month... Cause of blood clots: estodial and progesterone.. HTR... makes me a little concerned about what kind of meds I will possibly need if this thyroid mess requires hormones?


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## bigfoot (May 13, 2011)

Interesting on the estradiol and progesterone causing blood clots. Can you share what those labs looked like (and ranges)? There are some folks here (myself included) who are dealing with both thyroid and testosterone issues. They do play off each other somewhat, but I don't think the interactions are very well known or researched. Heck, just getting testosterone treated properly by a knowledgeable doc is like pulling teeth. Makes looking for a good thyroid doc look like a walk in the park, LOL.


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## Airmid (Apr 24, 2013)

bigfoot said:


> Interesting on the estradiol and progesterone causing blood clots. Can you share what those labs looked like (and ranges)? There are some folks here (myself included) who are dealing with both thyroid and testosterone issues. They do play off each other somewhat, but I don't think the interactions are very well known or researched. Heck, just getting testosterone treated properly by a knowledgeable doc is like pulling teeth. Makes looking for a good thyroid doc look like a walk in the park, LOL.


They've known for years that both of those cause blood clots in women. If you're over 30 the risk goes up. If you smoke at any age your risk goes up any higher. The Women's Health Initiative is the most famous one. Their hormone therapy part was stopped way early because of the terrible increase of risk of multiple health problems (stroke, heart attack, breast cancer and blood clots being some) was too great to continue.

I believe testosterone is a whole other ball of wax, but don't know for certain.


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## Airmid (Apr 24, 2013)

Jonlyn said:


> I have been going to the Asheville VA since 1989... hhhmmm .. maybe i should ck into the psych ward.
> But, really, they took very good care of me last March.. I thought I had the flu. went to ER ... tests revealed mulitple blood clots / lungs! off coumadin just last month... Cause of blood clots: estodial and progesterone.. HTR... makes me a little concerned about what kind of meds I will possibly need if this thyroid mess requires hormones?


I will say that the Asheville ER always took very good care of me but the doctors also knew how under-treated I was. For example, the last time I saw my PCP she claimed nothing was wrong with me when I told her I thought I had a severe bladder infection. I had a fever near 103, fast heart rate and high blood pressure (which is extremely rare for me and signifies something is truly wrong). I'll never forget the nurse begging her to treat me, saying "Her urine is more blood then anything" and my doctor saying I was faking it all.

Turns out I had a severe kidney infection. I was highly fortunate that I didn't have to be hospitalized and was on multiple antibiotics.

Sadly, a couple of years ago they did a study on the standard of care from the VA and NC ranked near the bottom with one of their clinics being on the bottom. So I hope they have cleaned it up and I hope you have a good PCP. There truly are some excellent people in the VA and some terrible ones as well.


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## Octavia (Aug 1, 2011)

That's just pathetic. Our veterans and their families deserve better.


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## Airmid (Apr 24, 2013)

I'm just floored. The things doctors don't tell you...

I just got back from my appointment. We talked about switching my pain meds to methadone like I wanted and due to my tachycardia she looked at my EKG's.

It turns out I'm right on the cusp of Long QT with a QT of 495. That with my fainting and near fainting in the past few months is bad news. There's no way I can have methadone because it will make it even longer in some people.

I wonder if this is why my Endo suddenly raised my meds so much since it hypothyroidism/Hashi's can cause this. I left a message with his office that I wanted to speak to him ASAP and that I have returned to my old dose of thyroid meds right now because of the side effects. Once I start feeling better we can talk about slowly going up.

And yes, the doctor I saw today was floored by the huge increase. She's also pushing my Cardio appointment through.

This thyroid needs to leave. We can't seem to suppress it, things are getting worse and with formerly having cancer it's too great of a risk. Seriously, it can't be worse without this thing.

I had to call my fiancee who had wanted to know how my appointment went and tell him this news...


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## Octavia (Aug 1, 2011)

Wait a minute... you still have your thyroid? (!!!???) Holy buckets, batman!

Well, it's clearly not doing anything for you if you're taking 200 mcg of Synthroid (or more). Many people hesitate to have their thyroids removed because they don't want to be on the medicine, but you are already on a hefty dose of it, so you really have nothing to lose and everything to gain in my opinion.

I agree with you on "this thyroid needs to leave." It seems to be doing you more harm than good.


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## Airmid (Apr 24, 2013)

Octavia said:


> Wait a minute... you still have your thyroid? (!!!???) Holy buckets, batman!
> 
> Well, it's clearly not doing anything for you if you're taking 200 mcg of Synthroid (or more). Many people hesitate to have their thyroids removed because they don't want to be on the medicine, but you are already on a hefty dose of it, so you really have nothing to lose and everything to gain in my opinion.
> 
> I agree with you on "this thyroid needs to leave." It seems to be doing you more harm than good.


It's only a piece on the right hand side that I still have, but yeah it's swollen and has suspicious nodules. When I had surgery, the thyroid problems were a complete surprise. The specialist contacted after the biopsy came back positive was something along the lines of "She's very young, leave as much as you can."

That worked out so well 5 years later... 

The surgery was originally for hyperparathyroidism, and with the other problems it became a long surgery.


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## HotGrandma (Sep 21, 2012)

HUGS

You may want to contact your Congressman and document your problems with the VA. At least that is what was suggested to me in dealing with issues with my husband and the VA on his claim.


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## Airmid (Apr 24, 2013)

HotGrandma said:


> HUGS
> 
> You may want to contact your Congressman and document your problems with the VA. At least that is what was suggested to me in dealing with issues with my husband and the VA on his claim.


Thank you.

I do actually use my Congressman and Senator. My fiancee wants me to go to the Medical Director of Portland Regional. I think at this time getting an audience with the Pope would be an easier goal.

Hopefully I will hear back from my Endo's office in the morning. I want to know why he moved my appointment and had to see my ASAP. And why he really wanted to increase my dose that much when he said for months he wouldn't go past 200. Something really changed and it's making me uncomfortable.


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## Airmid (Apr 24, 2013)

Whelp, my doctor actually called me back.

I told him about being really sick and going back to my old dose till I feel better. He claims it wasn't that big of a change, only 25%. I told him even the Clinical Pharmacologist said it was too much.

He said he'd send me some small doses to add to my 200 when I was ready and that was the end of the conversation.

No "I'm sorry you felt so bad and went into withdrawal since you couldn't keep your pain meds down for days." No explanation as to why he did a sudden about face on the whole meds issue. No mention of heart issues, which I assume he probably still claims aren't connected to my thyroid at all. Not even a mention of another ultrasound/FNA of my other suspicious nodules.

My next appointment with him is in Oct.


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