# What the heck is going on with me!?



## gravesmom (May 12, 2017)

Hello everyone, this is my first post, and it may be a long one so please bear with me. I'm in a pretty bad fog at the moment, so typing this up will be difficult.

I am a 32 year old female. When I was 10 years old, I was diagnosed as hypothyroid, and was put on levoxyl for a few years. My memory is so terrible, I'm not sure how long I was on the medication- but I DO know that once I hit puberty, I was not taking any medication whatsoever. At about 13-15 years old, I thinned out and started experiencing hyperthyroid symptoms as well. I was tired all the time, extremely thin, tremors, heart palpitations, heat sensitivity, the works. But at the same time, I also experienced Hypo symptoms- constipation, constantly cold, etc. The sad part about all of it is that I lived with the hyper symptoms for so long that I thought it was NORMAL, or I attributed some of the symptoms to other things...so I never received treatment. I walked around for years with hyperthyroid, and suffered through every last moment of it.

Currently I continuously have symptoms of both hyper and hypo symptoms. Every day is different.

I am 5' 10", 170 LBS., eat a relatively healthy diet, don't drink alcohol, etc. I have been prescribed propranolol that I have been taking for two years for migraine headaches. I also take daily suppressive therapy for Herpes that I contracted from my ex husband (note the EX part) I have since remarried. I'm also taking a daily dose of calcium, and B12.

When I was 24 years old, I got pregnant with our first daughter (after suffering four miscarriages), and that's when my condition was discovered, through routine prenatal thyroid blood work. I was sent to an endocrinologist, and was finally diagnosed with Grave's disease. I did not receive any treatment during my pregnancy, just monitoring.

After my daughter was born, I started rounds of antithyroid medication with absolutely no improvement. I ended up having a total thyroidectomy on 10/01/2008. I was not a candidate for RAI treatment because I am allergic to iodine, and at that time my daughter was very young and I was a stay at home mom. I have not been the same ever since the surgery. I traded one set of problems for a completely different set of problems. Some days I believe I was born to suffer. I did, however, have a short period of time, about 2 years, where it seemed the surgery was a good idea, and my medication was the right dose.

My husband and I decided to try again for another child. The pregnancy was very difficult. I gained almost 70 lbs. and dealt with all of the thyroid symptoms on top of pregnancy symptoms the entire time, but I pushed through it and had a healthy baby girl in September 2014. After her birth, I struggled terribly with losing the weight, despite being on a high dose of T4 and T3 combo...

Then, everything came to a head this past January. Let me explain. In July 2016 I started helping our church remodel the parsonage. This lead to some weight loss. I had my medication adjusted, but I dont think I did it fast enough because the weight just fell off. From October 2016 to January 1st 2017, I had lost 40 lbs. and I DONT REMEMBER ANYTHING THAT HAPPENED DURING THAT TIME FRAME. I don't remember my oldest daughter's birthday, thanksgiving, christmas...

All I know is that I woke up on January 2nd 2017 with severe heart palpitations, muscle spasms, slurred speech, hallucinations that were both visual and audible- I looked like I was having a stroke. My husband took me to the emergency room- where I was yelled at for "not taking my thyroid medication". Apparently my TSH was at a 15, T4 was very low, and they said I hadn't been taking my meds so I needed to go home and take them.

They refused to listen to me or my husband in regards to the weight loss, pills being too high for my weight, etc. and sent me home. I continued my medication as instructed.

The symptoms continued, and worsened over the next two days, and I also developed pins and needles tingling all over my entire body, with waves of goosebumps that would move down my appendages from my scalp. Back to the ER I went, with my husband. I insisted I was overdosing on my thyroid meds, but they again did not listen. Sent me home again- this time with propranolol, lorazepam, and instructions to continue my current dose on thyroid meds. Ridiculous. The last and final ER visit I received a HEAD CT SCAN to look for a TSH secreting adenoma. That was negative. The doctor yelled at me, saying I'm not taking my medication again...even though I HAD BEEN, and it was a dose that was much too high...I begged her to test my T3 levels...she yelled at me again, saying "T3 doesn't matter!!!"....So again, sent home with instructions to continue the very medication that was killing me. She also indicated that I must be doing drugs or seeking drugs or something like that- and even asked my pastor (who was with me at the ER, and whom I've known for 25 years) whether I was an addict or have a history of mental illness!!! Very hurtful and frustrating!!!

***Disclaimer. I don't do drugs of any kind, nor drink alcohol, and when my thyroid meds are right, I'm one of the most sane and logical people you'll ever know***

I decided to not listen to the ER, and stopped all thyroid meds immediately.

This very scary episode that lasted over one week (during which time I looked/felt as though I was overdosing on some sort of amphetamine or stimulant drug) was right in the middle of a BLIZZARD and my endocrinologist's office and PCP's office were closed, couldn't get a hold of ANYONE for help, and I was basically left to ride it out on my couch while someone else took care of my children. It was the scariest experience of my life. When I finally got in to my endocrinologists office, he took one look at me and determined I was definitely overmedicated. He ran a T3 lab which came back very high. I don't have those numbers available at this time, but I will get them at my next appt.

At that time he dropped my T4 dose from 200mcg down to 137 mcg and to stop cytomel completely, and to follow up for more labs in 2 weeks. Within one week of lowering my dose, I started experiencing hypo symptoms- so badly that my entire gastric system completely stopped. I was so constipated that if caused an episode of pelvic organ prolapse. I called him and told him what I was experiencing- and he immediately raised my dose to 150mcg with 5mcg cytomel twice a day- which would have been the perfect calculated dose for my weight at that time.

I very quickly leveled out and began feeling "better", but I just have not been the same ever since. I had another followup with him to check on my dose, and he instructed me to maintain my current dose. I also mentioned the swollen lymph node behind my ear. He checked it, and said if it got bigger to have it checked out.

In February, I noticed a feeling in my throat- like a lump that was there when I swallowed. Within a few weeks, the sensation worsened, and was noticeable all the time. I decided to call my ENT to get checked out. He did a naso scope on me in the office, and said he didn't see anything wrong that could explain the sensation in my throat- other than "irritation in my lower tonsils, which suggest reflux"- I was instructed to follow up with my gastro doctor for an upper endoscopy to see if there was anything going on further down where he couldn't see- SO I did.

Gastro doctor gave me an upper endoscopy and esophogeal dilation. Just before the procedure, they gave me a medication via IV called Glycopyrrolate- It shot my heart rate up to 170 bpm almost immediately, and had to give me another medication to bring it back down. That was scary. I turned on my left side to prepare for the procedure, and again, my heart rate shot up to 170. They put me to sleep, and stabilized my heart while I was out. Performed the endoscopy. When I woke up, he explained that if my thyroid medication is at the right dose (which it is), then I should not have had the reaction I did to the medication unless I have an underlying heart condition. He referred me to a cardiologist, and ordered an abdominal CT scan with contrast as well as a neck ultrasound. After the procedure I had noticeable HARD palpitations for days, the lump-in-my-throat feeling got worse, and again I developed the pins-and-needles throbbing with intense itching all over my body, night sweats, and a fever. The lymph node behind my ear has now also gotten bigger. Rubbery, fixed, and painless, but definitely there. Over 1.5 cm now.

Fast forward to my follow up with the cardiologist- after telling them everything that happened, they diagnosed me with PSVT and suggested a catheter ablation. They set me up with a heart ultrasound and holter monitor, which I pick up next week. A few days later I had the abdominal CT and neck ultrasound. I fully expected a call to say that everything was normal- as usual.

That's the hardest part about all of this. These symptoms are destroying my life, and my PCP insists it is all just "anxiety", and if my medication is at the right dose I should't be feeling any symptoms- but when I do, they say "well you're a thyroid patient so you'll never be normal"...thanks.

Well, the ultrasound revealed something in the thyroid bed. The first phone call they said "a nodule". I called back after collecting my thoughts, and had the nurse read the report to me over the phone. "Right side nodule, 1.5 cm x .5 x .5, ectopic or thyroid remnant."

I had them send a copy of the report to my PCP and my endo. I called my endo to give them a heads up, and was told he would review it and call me back to tell me if I needed to be seen sooner than my next appt. I have so many questions!!! This was all on this past Wednesday. I haven't heard back yet.

I knew I wasn't crazy. I new there was something in my throat/neck. I feel it all the time, I choke on food/drinks, having a hard time breathing clearly...but PCP says it's "anxiety". The pins and needles is almost constant now, and the itching is out of control. It's random itching, all over, like I'm being pricked with something. I have night sweats almost every night, a low grade fever at night with chills, etc. All sorts of things that are attributed to EITHER thyroid problems, or CANCER. Also, the first inch and a half of my hairline above my forehead has thinned drastically to the point that you can see my scalp. It's very embarrassing. And the weird part is that a lot of the symptoms are intensified at night. Usually around 6pm, the pin pricks start, and by bed time its full blown throbbing/tingling throughout my whole body. Very difficult to fall asleep and have had to resort to taking Benadryl most nights  Some days I feel like I'm losing my mind, and the treatment I've received from the ER, and especially my PCP make me doubt myself and I no longer trust my body OR the doctors. I just want to curl up in a ball and wait to die. The only thing that's keeping me going is my husband, my two beautiful girls, and my faith. I keep asking the Lord what He wants me to learn from all of this- and I still haven't gotten an answer.

I am just livid. I have so many emotions right now, and quite frankly I'm not even sure what the point of this post is. I think I just need to share all of this with other people who understand what it's like. I'm the only person I know that has thyroid issues, much less a total thyroidectomy. I've never met another person in real life that deals with the same thing I do. My husband loves me, I know that- but sometimes I worry about burdening him with my "complaints". I'm trying to be strong for my family- it is just very hard when I'm having all these problems with no answers. Another thing, I'm a stay at home mom, with a toddler and a ten year old. It is very difficult being a good mom to my kids while being such a wreck. Some days I feel like they got gyped. Robbed of the experience of having a "good mom". It sucks.

Thanks for letting me vent.


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## jenny v (May 6, 2012)

You poor thing, you've been through hell.

Do you have copies of your labs? I'm interested to hear what they are testing--I hope with your symptoms they are looking at Free T3, Free T4, Reverse T3 and all antibodies (TSI, TrAb, TGAb, etc.). I'm wondering if part of your thyroid grew back (it can happen) and is just randomly spitting out hormones? It's too bad you're allergic to iodine because that would kill off any remaining thyroid cells.


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## gravesmom (May 12, 2017)

Thank you for your reply! I know that I haven't been tested for any antibodies at all. I was able to access MyChart last night and there were some thyroid labs available:

1/20/2017 Free T4 1.9 (0.9-1.8 ng/dl)

1/20/2017 TSH 5.88 (0.27-4.20 mcU/ml)

after this test I continued to lose weight rapidly

3/21/2017 Free T4 1.7 (0.9-1.8 ng/dl)

3/21/2017 Free T3 3.0 (2.3-4.2 pg/ml)

3/21/2017 TSH 0.61 (0.27-4.20 mcU/ml)

after this test I gained 7 lbs. Weight now I think is stable.

Last night was terrible, I was so hot and sweaty and ITCHY!!! And my whole body was throbbing as I was trying to fall asleep. I was laying still, normal breathing, and I started having heart palpitations.

A few questions- what antibodies should I have him test for?

I initially had my TT due to Grave's- hypothetically, if this is a remnant in my neck, is it possible for it to be cancerous? Even though I didn't originally have thyroid cancer? I ask because I can't find any information on cancer in remnants for people with a TT for graves. Only info I can find is recurrent cancer in nodules in the thyroid bed after TT.

Is is possible that it is just scar tissue? Can scar tissue start growing larger YEARS later?

My heart wants to say its just scar tissue, but my head tells me that it's not based on all my crazy symptoms :


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## Lovlkn (Dec 20, 2009)

Based on what labs you have shared - your FT-4 tends to be in high range. Because of that, you may have developed some reverse T3 so you might consider having that checked.

I'm curious - have your labs been stable since your 2008 TT?

Antibodies to request would be thyroglobulin which is the cancer marker antibody.

All surgeons leave some thyroid tissue around the vocal cords as not to cut them during the surgery - I have to imagine some doctors leave more that others and if too much is left it could begin to function again. I've been told that after 6 months usually any remaining tissue will begin to function which is why many need to adjust medications 6 months post op.



> I'm wondering if part of your thyroid grew back (it can happen)


I've read about that but never actually ever had a poster share such a story. My theory on the whole thing is that the surgeon did not remove the entire thyroid and then over years it begins to function and possibly grow.

I speak from my son's experience of tonsils and adenoids being removed due to breathing congestion and after seeing no improvement I was told his adenoids were still there - I felt confident the original surgeon did not take them out. The new surgeon told me it is possible for them to grow back but in her experience - she had never had that happen in a patient.

Hang in there!!


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## WhatHappened (Nov 12, 2015)

I hate to be a putz, but just to be clear, your current dosage (that you are actually taking) is 150mcg with 5mcg cytomel twice a day?

What part of the country/world are you in (the ER doc was, to say the least, a bit of a freak), but at the same time your symptoms remind me of mine when I was way way way hypo. Like Lovlkn suggests, an Rt3 issue it will look a lot like being hypo.

Any chance of switching doctors or getting to an endo?

Any no worries on the super long post. A lot of us seem to do that (I know I did! lol. There are just sooo many symptoms and it is just so new and, and, and).

I slurred too, I hated it. I wondered if people thought I had a beer or three at lunch or before breakfast...


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