Hi there. I have quite a bit of information to give, please bear with me.
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)
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.
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.
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.
Before we can be of much help, we will need to know what your current thyroid levels are. Test results we need are Free T3, Free T4 and TSH. The results to the antibody tests would also be helpful.
Hashimoto's, in itself, doesn't cause the symptoms; it's the hypothyroidism caused by the Hashimoto's that causes symptoms. Many of your symptoms are consistent with hypothyroidism. The periodic swelling of your thyroid, indicates inflammation, which is common with Hashimoto's, as are nodules.
PCOS and insulin resistance often go hand in hand with Hashimoto's/hypothyroidism.
When you get the test results listed above, please post them here, and be sure to include reference ranges, since those vary lab to lab and have to be posted with results.
We also need to know if you are currently on a thyroid replacement medication; if so, which one(s), at what dosage(s)? How long have you been on it?
You might also want to get some additional tests for Vitamin B12, Vitamin D, iron, calcium and magnesium, as certain vitamin deficiencies can cause similar symptoms as hypothyroidism.
I gave them to you in the thingie.
"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 don't not have any other test results due to them being storage and me having to contact the hospital to get them. Due to the iodine uptake, I was told I was hypo the same day I had the xray. I also had nodules, and was tested for cancer, which I was negative.
I don't have my hashimoto's antibodies test results back yet. I have NEVER been on any thyroid medication. I have always had these symptoms, and just dealt with it, hence the reactions of pushing through it listed up there.
I listed PCOS because I knew it was relevant, so I know. I gave all the information I could give.
I figure I might as well get a drop on the ball doing any possible research in the mean time, I just stumbled upon medhelp and thought it was a fantastic place to ask if anyone else can figure it out.
My test results I am waiting on (taken on the same day, 9/11/12) are calcium, estrogen, testosterone, and "thyroid antibodies". I have not had the testosterone or estrogen tested for years, and I thought it was time for a check up. My list of information, research, and tests I should have had done are on another hard drive, so I was without them that day. I remembered what I could. Next time I get *any* bloodwork I will be checking t3. Calcium last time (April 16, 2012) was 8.4, scale being 8.5-10.1 .. due to acid reflux I have had for many years I eat quite a bit of tums, GP pawned off as calcium fluctuates, but still had it done.
I should clarify, I stated in the original post that 12 years ago (age 11), is when I had the xray done, but just for clarification to anyone that wants to skip that, I have no idea what month it was and it was either after August '00 or before August '01. So, that is quite a long history of issues.
Alright guys, got a call today and forgot to get the ranges but TPO was 11 and Tab was <20. Ionized Calcium was 5.2 .. I believe the scale started at 4.5, last calcium was not ionized. Didn't realize it was a different calcium test.
I have recently decided I need to make a journal of daily stuff.. every single pain, muscle twitch, shake, allergic reaction, what have you. I have gone through mental things where I didn't realize symptoms were symptoms and I figure TMI might just lead me on the track to something else. I have also been taking daily photos.. sometimes 2-3 a day, of my thyroid, from both sides and front, as well as pulling the skin to help show differences. I'm currently in an upward spiral, hence having the energy and brain power to do this, and I've been doing things to keep me from going into a downward spiral, e.g. not forcing. I'm quite enjoying being able to move a little bit more. *Everything* correlates to the size of my thyroid, which changes size so often since that day I was 17 and it disappeared and then came back. I am pretty sure it's been down due to lymphnodes being swollen for so long. I am still pretty adamant it's hashimoto's, but if it's not antibodies causing it.. what is it?
I'm currently using ubuntu and trying to get my pictures off my phone, and if anyone would be interested to see the difference (albeit not omg different, but different) I can PM them some comparisons. I have no idea what causes it, now.
It's entirely possible to over analyze things. It's not unusual for the size of your thyroid to change on a day to day basis.
I'm sorry, I thought you had more thyroid test results coming than what you'd already posted. Your TSH is good; FT4 is too low in the range, and apparently, you don't have the most important test of all, which is FT3, and is the hormone that correlates best with symptoms, while TSH and FT4 do not.
Your antibody tests are both negative, but that doesn't mean that you don't have Hashimoto's, since there are a number of people who have it without having elevated antibodies. As I stated in my first response, Hashimoto's, itself, does not cause symptoms; it's the resulting hypothyroidism that causes the symptoms. That said, there are other causes for hypothyroidism. You might want to check them out.
If you have any links to goiters changing size daily or often, that would be wonderful. I have not stumbled upon this at all.
I admitted I did not have FT3 done in a previous post.
Question about antibodies, have you heard of or read anything (article, here, doesn't matter) about having less antibodies while being ill? Does your immune system stop attacking your thyroid as strongly during that time? I cannot find anything on this, either.
I understand that Hashimoto's itself doesn't cause the symptoms, but if the affect of Hashimoto's is certain things, then those things are going to be caused by what made them.. Hashimoto's. I understand that many people get confused on this issue and you're trying to make sure there's no confusion, but I do get it.
Due to the immune system fluctuation, being positive for any antibodies is quite a serious dealio and needs to be monitored. Someone without that immune disorder won't make those antibodies at all. Since it's been 12 years since my goiter started, I am absolutely confident I have had them the entire time. That is quite a long period for fluctuations and damage, especially the build up from long and *many* years of symptoms.
I have had quite a rough time finding *any* doctors that know their bidness, and it is slow going. Hence the daily symptom chart, for myself and them, and the pictures of my throat as proof. I am, honestly, even debating on if I need to have signed testimonials from friends on things they have witnessed. That is how bad it is. I appreciate the responses, and thank you!
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