Hi Everyone, I was diagnosed with Thyroiditis about a year and a half ago. I am still doing research and learning more about it. I am 25 years old and am struggling with finding good research/books on just thyroiditis. I am having to read a lot about hypothyroidism since I do tend to be hypo more than hyper and far as my numbers and symptoms go but I would still love to know more about what I actually have. I also struggle with finding information or people who have this that at my age.
If you have any resources or information pertaining to Thyroiditis specifically please pass it on and I would love to chat with anyone who is my age and dealing with this too. I know I have a long road ahead which is why I want to get a handle on it right away.
I unfortunately do no know what form of Thyroiditis I have. My doctor isn't very thorough and I am not satisfied with the care I have been receiving. He is very short with his answers and I always leave there confused. I was looking back at my records and he had mentioned I might have Hypothyroidism at one appointment then said it was Thyroiditis at another. I am going on Thursday for a check up and will be asking many questions as I always do, hopefully I get a correct diagnosis and now I know more specific things to answer.
All of this started in April 2010 when I had a rapid resting pulse of 140. I had been sitting down for awhile and noticed my pulse was very fast, after checking it it was 140. This was not normal for me, my normal RHR is usually in the 70's. Along with fast pulse, I was dizzy and lightheaded and very anxious and had never experienced anything like this out of nowhere. I was not particularly stressed at that point in my life. I decided to go to my PCP to get things checked out. Long story short I got my Thyroid checked out and they found my numbers being off and referred me to an endocrinologist which he in turn wanted to make sure my heart was ok before moving on with anything. Over the next year or so I saw a cardiologist and then got referred to an electrophysiologist. They ran all sorts of tests including a stress test because I was having what I call "episodes" of rapid pulse very frequently and it was affecting my work and my overall well being. Every time I had an episode I would be out of breath like I just ran a marathon and would be lightheaded and it would just take a lot out of me. Eventually the episodes were less frequent and my doctor just said that if it comes back and I can live with it I am fine and it isn't damaging my heart. Once I was cleared in the heart department I went back to the endo to get all of that worked out. Neither the endo or electrophysiologist really know if those episodes were related to each other or not. So my endo took more bloodwork and decided I needed to be on Synthroid. I believe I started Levothyroxine/Synthroid at 50 MCG. Below I have put a list of my notes in chronological order and various important things that have happened in between. I will also put just the blood test results below that. Note: this last time I got blood work and the time before that I got my test results in the morning while fasting, every other time I did not because I was unaware that it was important. In my research I have read that it can effect your TSH levels so that's why I started doing it that way.
05/26/10 met with Endo; had blood test; said tests offset and because one test showed TSH less than zero - might be thyroiditis; might be cycling up and down would be eventually hypothyroidism; said test for Total T4 would have been affected by birth control
05/28/10 results from Edno; not hyperthyroidism; may be start of thyroiditis; come back in 6 weeks for another blood test at his office(after July 4)
09/15/10 had Free T4 test done at Endo's office
09/17/10 Endo's office called:have Hypothyroid; low thryroid function; schedule office appt in 4 wks
10/27/10 Endo - ordered a FreeT4 and TSH test; said from before TSH was high but freeT4 showed that the blood was normal;
10/28/10 results from Endo high TSH; repeat test in 4-6 weeks
02/16/11 Took Stress Test
03/04/11 Electrophysiologist said stress test results were excellent BP 114/75; Temp 97.8; pulse 87; oxygen level 97. Pain was result of Beta blocker(are other alternatives if need - ablation still out there.)
05/09/11 Endo office called reading is TSH 5.95 want 5.50; Free T4 1.45; increasing dose from .050 to .075 come back for blood test 6 weeks from when start taking; would be about Jun 25
06/30/11 took blood test at BJC; results TSH 3.81 Free T4 1.68
08/20/11 took blood test at BJC TSH 3.53 Free T4 1.43
10/10/11 took blood test at BJC; TSH 3.98 Free T4 1.61;
12/02/11 took blood test at BJC ; TSH 4.85
12/23/11 talked to nurse Skor raised dosage 88mcg Levothyroxine old was 75
this morning started new dosage at 88
01/17/12 pulse erradic at 93 @rest; laboring to breath; Talked to Endo doesn't think its meds because of such a small dosage increase; said to go back to old dosage 75mcg and monitor for two weeks then touch base with him - looking for symtoms to go away or not;
02/20/12 blood test; renewed prescip 75 results were TSH 6.27 Free T4 1.33
03/04/12 On new dose starting 88; 3/1/12;
04/07/12 blood test TSH 5.40 FreeT4 1.37 increasing to 100 mcg;
06/16/12 blood test TSH 2.45 Free T4 1.79 nurse said both in normal range Endo said keep the same dosage; HAD TEST BEFORE EATING - MAY BE WHY TSH WENT DOWN
07/20/12 blood work?--no results yet
Hopefully that is enough medical history. I am also on the NuvaRing and have been consistently for over 2 years (was off for a few months but was on it about a year prior). I have been told by my doctor this has no effect on anything thyroid related, but I am not so sure.
My lifestyle--I have always been relatively healthy but for the last year I have started eating more fruits and vegetables, have cut out soda completely, do not include anything with Sucralose or high fructose corn syrup, and pretty much stay away from most processed food in general. I buy a lot of fresh produce and meat and cook most of my own meals. I had gained about 15-20 pounds since my diagnosis and a little before I found out. I have now lost about 15 in the last year since eating right. I have also tried to make exercise a part of my weekly routine. I get 8 hours of sleep most nights. I have a stressful job but find that with exercise and journal writing I can relieve some of that.
I think that is all for now, hopefully I answered all the questions and have given enough information. Thanks for your input, it feels good to finally be taking control of my health instead of trying to ignore I have a health issue.
I've read through this entire post twice.... and I don't know how to make what needs to be said any easier than just saying it.... sit down hun......
I don't see anything but a waste of 2 years for you even (IF) this is really primary thyroid disease causing all this for you.....
The high amount of estrogen from your BC could be causing most of all this for you and (so you know) if proven the BC is the issue just stopping it won't make you feel better fast. It takes a while for things to settle back in when a hormone level is out of whack.
In addition to all my frankness..... :( - Your thyroid panels and "talk" your getting from the Endo is useless. Most endos won't engage in any additional tests directly on thyroid function and be able to comprehend the individual ratios one needs to stay balanced with them. To start and explain...... Your missing a critical lab with every test you had done. Free T3. Running the Free T3 (FT3), Free T4 (FT4) and TSH is best. Then a concerned doctor will look closely at the FT3 and FT4 labs and balance them so the FT3 ranges near the upper 3/4 of the reference range and looks at the FT4 and balances that in the mid portion of the reference range using thyroid medication if needed. Most favora .ble docs will not pay close attention to the TSH number but it can and does play in the equation of balancing the symptoms having it done with the others.
Thyroiditis is a defination meaning swollen thyroid or inflammation in the gland. This can be caused by stress, and other hosts including high estrogen levels. OB GYN's aren't very explicit when offering patients BC about the other hormones affected and most patients seeking BC are only thinking of protecting them from pregnancy and don't do their entire research on how these scripts can throw other hormones way out of whack.
My suggestion is to get those labs along with the autoimmune labs for Graves TSI and Hashimoto TPOab. I would additionally request to have an ultra sound done in the thyroid to check for any abnormal structure or nodules forming.
Your right on top of how to eat good. You may want to add Selenium into your diet more with supplementation around 200 mgs daily to see if you can simmer these out of whack hormones to try and get true reading on really where, you, are at naturally.
YOU need to have your FSH/LH estrogen, progesterone tests done and it wouldn't hurt getting those with the other labs.
Did this doc by any chance offer antidepressants or anxiety medication also? If so that doesn't surprise me in the least. That's usually the next phase in all this instead of offering correct treatment for whats really going on.
And.... it may best best if you eat shellfish to avoid that right now along with ionized salt.
By any chance could have the first "episode" happened to you while eating shellfish or high salt? I know it sounds odd but if your immune system is rearing up some of this and a bit off from the stress eating that could spiral a fury of anxiety for some time.....
First, stella I have never had shellfish and I use mostly sea salt in my diet.
I asked my doctor various questions and got the answers I pretty much expected.
I do have Hashimoto's Thyroiditis, this is the first time it was mentioned.
I asked about the T3 being tested and his response was it was unnecessary due to me not being Hyperthyroid.
I asked about exposure to certain chemicals/harmful metals i.e.- fluoride, silica, aluminum etc. and he said it doesn't matter if you exposed to these.
He confirmed that he believed the hormones and estrogen from my BC have absolutely no effect on my thyroid.
He also said it does not matter when I take my medication and it doesn't matter if I get my blood work done while fasting. As long as I am consistent with both.
I also got blood work done Thursday morning, my Free T4 came back as 1.6 (his range is .90-1.8) I am waiting for my TSH (his normal range is .1-4.4) I am to stay on my same dosage of 100 mcg as of now since he believes my symptoms to be "under control". I have lost 10 lbs since the last time I saw him in January. I did tell him about my anxiety, exhaustion, dry skin and brittle nails but these seem to be "minor" symptoms I guess.
I guess I still feel kind of lost, I just bought a few more books. I am trying not to believe 100% what I read and hear but when I keep hearing the same information over and over it is difficult especially when my doctor is saying otherwise.
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