# Confused



## Airmid (Apr 24, 2013)

So on January 22 I went hyper on 250 mcg of Synthroid. I was afraid something like this was going to happen and it finally did full bore. Several days before things just went to hell my thyroid started hurting more and more. It has been hurting me for a little over a year but it's been background pain - you know the kind you don't notice unless you think about. But it became a more steady vocal pain that went up my neck to my jaw and remained like that for almost two weeks. I couldn't lean my head all the way to the right (like to cradle a phone) without sudden stabbing pain probably due to the pressure. I didn't feel right when I woke up and shouldn't have taken my full dose but I did. By evening I felt like I had been slammed against a wall at high speed.

The symptoms included:

- Racing heart. I've normally been tachycardia but this was awful. My heart was everywhere from 100-160. I'd wake up drenched in sweat with a heart rate in the 150's. I started to keep my beta blockers by my bed. When I would stand both my blood pressure and heart rate would go high, with my heart rate jumping up to the 140-150's and staying there for 5-10 minutes, making me intensely dizzy while walking.

- Exacerbation of my SVT (just cured by catheter ablation).

- High blood pressure for me. I normally run 94/60 (genetic thing on my mom's side, she still has this BP) and was suddenly running 130-140/80-90. Which is quite a jump when I am never that high unless I'm very sick. Even severe pain doesn't raise it until I get to the point of screaming

- Severe thyroid pain, which I still have somewhat

- Fine hand tremors

- Hives, lasting a few hours at a time

- Faster GI and exacerbation of my GERD which I still have

- Dry itchy eyes, the feeling that I have sand in them. Swollen eyelids at times. Still have this.

- Insomnia and disrupted sleep, which I still have

- Racing mind, which I still have at times

- Increased sweating, which I still have

- Restless and jumpy, which I still have somewhat

I immediately discontinued my thyroid hormone and contacted my Endo. No thyroid tests were done and I wondered if he actually cared (I did find out today he does). My Cardiologist worked with my for the heart symptoms. I got through it and started really feeling better about ten days out from my last Synthroid dose. Since my catheter ablation was on Feb 11th I decided to not even attempt thyroid hormone until I got through that as my heart issues would delay it if I started going into that again on the day of my procedure.

The ablation was around four hours, they fixed the SVT but could not get my heart to go into the rhythm issues I had been having earlier.

Last Friday I started my thyroid hormone again on the schedule I was given, 125 mcg every other day. Then every day working my way back up to 250. I began having heart rhythm issues on Saturday lasting a few minutes at a time, setting off my blood pressure machine (I have it due to my low blood pressure and being on beta blockers due to tachycardia) yelling that my heart rate wasn't right. While I didn't have a really high pulse like with SVT - it was only 120-130 - it just felt bad. Chest pressure, some pain and like my heart was vibrating. No words can describe that sensation.

My Endo called me today after I left a message and we talked about what was happening. We decided to go all the way back to 25 mcg and work up from there. My worry is that I haven't lost these symptoms and still have that pain. I wasn't well controlled on the 250 mcg and had mixed symptoms throughout the years. This has just been the most stark portrayal of them. I'm worried about taking any thyroid hormone again and no labs have been ordered. I don't know what to do, should I start low or keep waiting to see if these symptoms resolve. They eye stuff does worry me a bit.

It has been mentioned to me to try to get a TSI test. I'm trying to figure out how to get this since I just convinced my Endo to put in for outside care (I'm a disabled veteran in the VA) and I don't want to step on the toes of an ally any more then I have to get that referral. That's already going to be a long fight since I doubt the VA is going to say "Gee, we're really sorry that we've made you journey through hell with your Hashimoto's/hyperparathyroidism, we'll let you go to some of the best doctors in the nation now instead of making you travel 12 hours out of state for maybe good care."

My T3 has always been in the mid to high range of normal no matter what my thyroid has been doing. I'm wondering if I've somehow gone hyper and if it's permanent. Has anyone else gone through anything like this?


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## Lovlkn (Dec 20, 2009)

airmid,

Did anyone run any Free Labs on you when you complained of the symptoms? How about before you started back on the thyroid hormone?



> Last Friday I started my thyroid hormone again on the schedule I was given, 125 mcg every other day. Then every day working my way back up to 250. I began having heart rhythm issues on Saturday


It's pretty obvious that you are being over medicated.

I highly suggest you have a TSI if one has not been run on you.


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## Octavia (Aug 1, 2011)

250 mcg is an incredibly high dose...incredibly high. I don't recall your history, but what prompted such a high dose for you?


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## Airmid (Apr 24, 2013)

The high dose was cycled up over the past two years from 75 mcg when they ceased to be able to control my thyroid. My TSH was everywhere from 5-55 and my free T4 is constantly low, though my free T3 is usually okay. I only have part of my thyroid due to cancer and was diagnosed with Hashi's at that time. Amazingly, I was still hypo most of the time on this dose then this and have been requesting to have this out for a couple of years now.

No, no recent labs, not even when I went in for my ablation and appeared really hypo with a very low blood pressure and for the first time in years a heart rate that was in the 80's instead of in the 100's. The last labs were run on Jan 8th when the Prednisone therapy I was on was suddenly stopped and I felt really bad. They were way off from where I had been 3 months earlier and it was only a couple days later that my neck began really hurting and all this happened. I don't think it's a coincidence and mentioned it to my Endo. He offered to test my adrenals, especially since I felt normal while on the Prednisone. I wrote back and told him perhaps I needed to be put on a short course that's tapered down correctly to maybe calm things down and allow us to cycle the thyroid hormone up better. The neck pain still hasn't gone down and it does concern me.

If we proceed with the adrenal testing (which seems like loads of fun with the shot and blood draws) I'll request the TSI test before we start at the original blood draw. The man will probably look at me weird but it might be a good thing to know.


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## joplin1975 (Jul 21, 2011)

Ablation = the heart thingie, right?

I'm sorry...I can't remember, but is removing the rest tabled until your cardiac issues get settled? It just sounds like you'll be one of those people who will need the whole dang thing out before you can find a stable dose.


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## Airmid (Apr 24, 2013)

joplin1975 said:


> Ablation = the heart thingie, right?
> 
> I'm sorry...I can't remember, but is removing the rest tabled until your cardiac issues get settled? It just sounds like you'll be one of those people who will need the whole dang thing out before you can find a stable dose.


Yeah the ablation was the heart thing - where they put catheters in there to see if they can find the feed back loops causing the issues. They fixed the SVT so hopefully I'll never get to have a heart rate over 200 just sitting on the couch again. 

Ironically, the heart issues probably won't get a lot better until the thyroid/parathyroid issues are solved. It's like a catch-22. Though my last two surgeries (neck and emergency gallbladder surgery) were with tachycardia and went without problems.

My Endo has no issue with taking it out - it's getting the VA to do something that is the problem. Plus I need surgery for the parathyroid anyways and it would be a good idea to get the remaining thyroid out before it becomes even more of a mess and jeopardizes my normal parathyroids even more.


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## CA-Lynn (Apr 29, 2010)

The adrenal testing is no big deal. Just a lot of sitting around, passing time, waiting for the blood draws.


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## Airmid (Apr 24, 2013)

Well my body officially hates life.

On the afternoon of Feb 21 I has this weird sense of impending doom for several hours. I couldn't shake it and didn't know what caused it. I woke up around midnight with pain in my upper back around were the upper half of my right kidney would be. It was pretty severe but with medication tolerable. I had had this pain reoccurring before since Thanksgiving and had a sense of swelling in that area constantly since that time. A little bit before my catheter ablation I had it on the left hand side. It was attributed to pleurisy at that time due to my mild problems with breathing and the scratchy sound heard from the lungs. (the local VA clinic doesn't have an X-Ray). It got so painful I actually considered calling an ambulance at that time but the pain backed off and with a multitude of things going on at that time I put it out of mind. Now here it was again.

At 8 AM Feb 22 I called my VA nurse. The message got garbled (frequently happens with the call center) and I didn't hear back from her until 3:30 PM. At this point I had things under control more or less. It hurt at times to take a deep breath but with my history of asthma I didn't think a lot of it. Due to my parathyroid problems a kidney stone was suspected and I was told to go to the hospital if the pain got too severe or I developed a fever. My father was back in town and brought me dinner. I took a nap at around 6 PM.

I woke up at around 6:40 PM and the pain was excruciating and getting worse. I managed to call my father gasping out "Come get me now!" before I just screamed in pain. I have been brought to my knees from pain, collapsed from pain, passed out from it but never just screamed unrestrained from it. It was hard to breath during this time. The neighbors who came running said it sounded like I was being strangled while screaming. I told them about the kidney stone suspicion and they were all very sympathetic and made sure I had transportation to the hospital. My father was there a few minutes later, only being around seven minutes from me and it was a very hard trip to the hospital. He wanted to get me a wheelchair but sitting was worse then standing. I couldn't get comfortable.

They were a bit busy and even though my pulse was up (around 140) a woman with a kidney stone, even though sympathetic, wasn't a dire emergency. So I waited 40 minutes before being taken back. I got back and saw the same doctor I did in December for this. He had suspected referred pain from GYN issues at the time. I told him I had followed through with my GYN, had the polyp removed and biopsied but no imagining studies. The pain had settled down by then but he was highly concerned by the level I had been in and the fact that I was tender in that area of my back, something kidney stone patients aren't. I couldn't stand lying on my back. Again the mild breathing issues were attributed to my asthma. He gave me a massive anti-inflammatory drug which I welcomed and started with a general examine, then a pelvic, then an abdominal CT.

At this point no one knew what was wrong with me. Due to how busy things were there I didn't get the CT until around midnight. They thanked me for being so patient with everything, including the doctor, and I told him it wasn't their fault it was a popular night. The CT of my kidneys was normal. However they caught the lower portion of my right lung and it wasn't filling out correctly. The doctor did a D-Dimer test and it came back positive. I was told I would have to endure another CT - this time with dye.

By this time, around 1:30 AM, the pain medicine had worn off and I had developed a watery, congested cough. My blood pressure dropped quite a bit for a while, hitting 75/40 before they got it back up. When the nurse got me up to CT and they had me lay down, I could barely stand it. If felt like I was suffocating and the pain was horrific. There was no question now that the problem was in my lungs and I was terrified. They put me on oxygen and did the CT as fast as possible. The nurse took me back and told them what had happened. Since my blood pressure was up more they started with low doses of high powered pain killers and I could only stand sitting up.

The doctor came back a little after 2 AM and told me I had a mass of blood clots in the lower portion of each lung. He looked so sad. I think we were both thinking about my trip in December where this was missed. I also thought back to my trip to the VA hospital on Thanksgiving where I had this pain, albeit less severe, a lot of problems breathing and was diagnosed with a bladder/kidney infection without ever being physically examined. That's what makes me mad, not this doctor who did his best by me in December and wasn't expecting a 34 year old woman with no risk factors to have sudden unprovoked PE's.

I was immediately started on heparin and transported to the Cardio-pulmonary unit. Because the VA was so unclear about what their care plan was, the hospital nurses, with clearance from the doctor, started teaching me how to do my own heparin shots starting with the second one. I had to stay an extra day because the nurses feared for my safety going home with no clear information at all from the VA. It took the hospital six hours to hear back from the VA that day and to make sure I had an appointment. At discharge, the doctor did something unheard of and got the hospital to send me home with my next shot of heparin (around $175 a pop) because he feared the VA would make me dangerously late on my next shot and they were right.

I'm now in the Coumadin clinic at the VA and still working through all this. No DVT's were ever found. While unusual, I have found out that I am not the only younger woman to walk around for months with symptoms before being accurately diagnosed. I think of the family history on my father's side - severe catastrophic strokes that are always fatal plague it. In fact everyone still alive on that side of the family over the age of 45 takes daily aspirin just for this reason. While I am twenty years younger then most victims I can't help to think how lucky I am. No matter how annoying the heparin shots are while we get my Coumadn up over 2 (they want me around 3 for at least six months), the fact I'm stuck with new jewelry while on these drugs and all the pain I endured for three months I can't help think how lucky I am and how things could have turned out instead.

And now they're saying it could be my uncontrolled thyroid somehow affecting my liver and throwing clots. I was like what?! And my Coumadin manager complained how much harder it would be to managed my levels with us still trying to build my thyroid hormone back up. I pointed out my thyroid hasn't been well controlled or under control at all for years so it never would have made his life easier.

It's amazing I made it through my cardiac catheter ablation. It's amazing I'm still here to be honest. I think it's working through the anger right now, that if anyone on Thanksgiving had taken the time to examine me, to investigate how things were and find a cause, a lot of pain and suffering could have been avoided. Add the fact their incompetence could have killed me and yeah, I have some pretty negative emotions right now.

I do have to hand it to all my nurses. The ones at the ER (which has patched me together and helped me so many times) were very kind to me, my main nurse hugging me before I was finally transported at 6 AM. My nurses in the unit were very kind, supportive and caring and I don't have a negative word to say about them. I had the same night nurse all three nights and she was so kind. I didn't sleep much so she was used to seeing me up. At around 4 AM on my last morning there I asked for pain medication (they had me on very powerful stuff every 4 hours at my request) and when she brought it I asked if there was anything to eat. So she brought me some really good creamy tomato soup and crackers and said it had been someone's birthday and asked if I wanted any cake. I said sure, so she brought me this huge chunk of cake and tea and milk. She really did spoil me.


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## CA-Lynn (Apr 29, 2010)

PE's are scary. I had one three years ago in the Middle East. Didn't know what it was. Just knew I wanted to get home to US for diagnosis. In my case, because I take MTX, they couldn't give me heparin or Coumadin or anything, for fear I'd bleed out. It gradually went away on its own, though it took some time and LOTS of monitoring.


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## Airmid (Apr 24, 2013)

CA-Lynn said:


> PE's are scary. I had one three years ago in the Middle East. Didn't know what it was. Just knew I wanted to get home to US for diagnosis. In my case, because I take MTX, they couldn't give me heparin or Coumadin or anything, for fear I'd bleed out. It gradually went away on its own, though it took some time and LOTS of monitoring.


I have to say it's rather scary while being on the blood thinners.I couldn't imagine not being able to take them, keeping your fingers crossed basically and hoping another one doesn't reoccur while you're healing from the first. Especially in another country to boot.

I'm stuck being on them since I apparently kept getting them after the first. I'm glad these drugs exist but at the same time it's not a fun experience being on them.


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## jenny v (May 6, 2012)

Good grief, Airmid, you just keep getting put through the wringer. There's not much I can add, but I'm praying for you and sending healing thoughts your way.


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## bigfoot (May 13, 2011)

Phew, that is quite the odyssey -- here's some more happy thoughts and prayers heading out for you! I think you and your doc are right; yank the rest of whatever thyroid remains out and start from square one. While this probably won't fix everything else, I bet it would do quite a bit to alleviate and stabilize things.

Sadly, with any stories I've read or heard about, the VA can't seem to find their way out of a wet paper bag. And employment there doesn't sound much better, either. Our nation's warriors and their families should be getting the best care imaginable, not the constant run-around. Argh.  But I digress...

Do let us know how things are going, and hopefully you are able to get some rest! :hugs:


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## Airmid (Apr 24, 2013)

Thank you for your kind words guys. I'm a bit more tired then I thought I would be and I kind of thought the pain issues would have quieted down. What I have learned is that the symptoms you had before diagnosis tend to be the ones you keep during the first part of recovery. So at least I know a little more what to expect.

I'm off the heparin with my last Coumadin being 2.5 My clinic wants me at around 3 as that gives us more room to keep things stable (I wont go low enough to clot hopefully or high enough to have bleeding risks). While I'm glad not to be stabbing myself in the stomach anymore I also felt a bit more protected. Still no idea as to what caused this to begin with as no DVT has been found and I have to say that makes me a bit nervous.

What has really surprised me is that while more people die yearly of pulmonary embolism then cancer, there are a lot of cancer support groups and almost zero pulmonary embolism ones. I'm not a big person for support groups but with the anxiety of why this happened hanging over my head I thought it might be nice to talk to other people who had it happen. Apparently I won't be doing that face to face and that's a shame.


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## ifthespiritmovesme (Jan 8, 2014)

*Gosh Airmid, I am so sorry to know what you've been through. Hope you start feeling better soon. You're in my prayers..*


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## Airmid (Apr 24, 2013)

Between my coumadin level sinking so low as to almost need to be back on emergency heparin to soaring so high as to have unexplained bruises all over my body I am about at my wits end. On top of that I can't have my normal shot of Toradol when the muscles cramps get bad in my back due to my herniated discs. I just feel so hopeless as nobody is any closer to solving my unexplained blood clots at 34 and on top of that my being on coumadin makes most doctors nervous to do anything to help me.

My thyroid hasn't been tested since the time of my blood blots in my lungs. I still have the same old pain in my neck on top of it all. I am at a loss of what I am to do here. My thyroid still is a mess, so is my parathyroid. And no one closer to explaining all the blood clots at this point in time then they were two months ago.


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## joplin1975 (Jul 21, 2011)

Oh, gosh....you don't sound well at all. I'm so sorry. I wish there was some way I could help, but I am keeping you in my thoughts. Hang in there!!


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## CA-Lynn (Apr 29, 2010)

As someone who had a PE a few years ago, and who cannot take coumadin or heparin because they thought in my case [due to other drugs I take] I would bleed out, I'm here to tell you that sometimes these things resolve on their own. I had to have radio-isotope scans every two weeks to check the progress of the clot. In my case they suspected it was caused by either: being too sedentary or the HRT drugs I was taking. The HRT drugs were removed immediately and I learned how important it is to MOVE.

Do they know what caused yours? Also, this is a board certified pulmonologist treating you?

About your back. I love Toradol, but...... would an epidural be an option for you? [I have DDD, LGMD, AS.....list goes on and on.]


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