Hi there. I have quite a bit of information to give, please bear with me.
Family History:
Sister3 - Grave's Disease (thyroid "nuked", permanent medication)
Mother - Normal to Hypo (gave up on medication for many years due to hypo > medication > normal > doctor taking off medication to become hypo again)
Father - Hypo (never took medication)
Non-Thyroid:
2/3 sisters have PCOS (Sister1 & 2), one is infertile (Sister3), one with misshapen womb.
Sister2 has epilepsy.
Quite a bit of cancer in the family, albeit I'm a little hazy on anyone but sisters and father. Sister3 had breast cancer in her 20s and it was removed. Sister1 had a tumor the size of a grapefruit on her ovary, with multiple smaller ones: all removed. Father died of brain tumor that went undetected for years.
My History:
Diagnosed with hypo thyroid and goiter 12 years ago (now 23 years old) with nodules that were negative for cancer. Hypo via iodine uptake. I do not have anymore information than this, as I have only recently realized I need the actual information besides word of mouth and faith.
Diagnosed with PCOS a few years ago.
Thyroid ultrasound in June, confirmed goiter, with multiple small nodules bilaterally with heterogeneous echo texture throughout thyroid. Largest nodule .6 cm, right upper pole, second .4cm mid pole left. Right lobe measures 5.6x2.3x1.4cm, left is 5.6x2.1x1.6. Most likely benign. Supposed to have been scheduled for another ultrasound, but current endocrinologist has not done so and I need to track him down. Over time, my thyroid shrinks and grows, I didn't feel my actual neck until I was 17 when I woke up feeling.. weird. Energized. Still felt weird, but it was just all of a sudden gone.. rubbed my neck waking up, and freaked out.
Test results: I have in the past been "high", but I am unsure if my GP was reading it correctly (also getting those, as they are in my doctor's storage), April I was .6 TSH (.34 - 4.82) and .7 FT4 (.6 - 1.2). Two days ago, I was TSH .78 & FT4 1.0. I called to ask them, as I had them do a hashimoto's panel due to the swelling of my thyroid and how I have "upward" and "downward" spirals and those aren't in yet. My GP humors me, the one good endocrinologist I found moved to another state, the last one I went to didn't ask me for symptoms, past history, family history, nothing and didn't know what hashimoto's was, currently have a referral in to an ENT specializing in throat and an endocrinologist that has been recommended to me and has good credentials.
Symptoms:
I have a WIDE arrange of symptoms. Some correlate to the size of my thyroid, some are constant, some are constant but also correlate to thyroid.
Nausea, heartburn, allergies to many things (itchy, mouth feels scratched when I eat certain things, nausea, cramps, gagginng,hot flashes) that vary in range.. one day I can be fine, the next I'll be itchy down my shoulders and arms and have a hot flash from a scent or something.Lymphnodes in throat swollen for 4+ months. EXTREME fatigue and shakiness. If I try to force it, it gets worse, so I have learned to pace myself. I am a very stubborn and suck it up person, but it only works so long and then I'm recuperating for quite a while. If it continues to get worse, I will start sleeping every chance I have, I won't remember things, can't think, can't do basic math problems, etc. While recuperating from that, I won't have any memory of it, it will be a fog. Muscles twitch, usually in combination with shakes after stopping what is causing the shake, such as sitting down causes leg shakes until I"m actually sitting, then my thigh(s) or calf(ves) will twitch for a little bit. Hand tremors, hot flashes, when it's hot out I feel like I'm burning up from the inside out. I used to have a low temp (96.8) and extremely low blood pressure (like, can't figure it out low) which runs in the family, but for a couple years now I have been normal (98.6-98.8) and blood pressure has been high randomly, but yet still normal others.. I am mostly sure it is due to forcing myself through the tired and anxiety from being at the doctors'.. I have *always* had a heartbeat around 100bpm. I have about half the hair I used to (used to have a LOT of hair), and it's most noticable to me at the bottom neck of my head. It's not too noticable, but there is definitely a difference. I've even had a neighbor ask me about it. I have a LOT Of symptoms and I'm sure I missed quite a bit here. I apologize for the massive text, but mine has a lot of possibilities.
Can ANYONE suggest anything besides hashimoto's? It explains quite a bit of my symptoms, my ranges, goiter, so forth. Does anyone have any advice? I have done a LOT of research, as I have been looking for help since I was a preteen. As a preteen, I was told it would go away (adolescent goiter). It didn't. Now, I am not listened to because of my age, difficulty, and ranges. Coincidentally, I have never had blood drawn during a "downward" spiral, with my thyroid swollen huge. I will have to one day pop in and get blood taken despite the extreme, extreme fatigue, burny pain, anxiety, nausea, and so forth. Trying my best, guys. Hope you have any information to give me.