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Old 07-26-2012, 10:37 PM   #1
Join Date: Jul 2012
Location: Fort Wayne
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luvspnk31 HB User
new here - seeing endo tomorrow.

HI! I am new here, and I have my first endo appt tomorrow am. I am feeling a little discouraged even before i see him, simply because I am terribly afraid that he is just going to throw meds at me like all the other docs.

First, a little about me. I am currently in my mid-30's , and have suffered from anxiety/depression since my teens and early 20's. I have always questioned whether or not this was a complete dx since the meds only ever helped a little. I have always been moody, and anxious, and the depression sneaks in there too sometimes. Fatigue has always been an issue, even back when I was thin and active. I just chalked it up to a poor diet and not enough sleep. The thing is, sometimes I feel great! Lots of energy, not fatigued. But it's always short lived.

About six months ago, I went to my ob/gyn for my "wonderful" yearly exam. She decided to run a blood panel which of course included my tsh. At the time it was 3.14, which according to their lab was "normal". I started doing a little research, and discovered that several years ago, it was recommended that the reference range be changed. So, I called her and asked for a referral, which she did give me.
skip ahead about 3 months. ( the doc gave me the referral, but no one bothered to call me, so I finally called them. totally messed up, i know) I couldn't get into the endo for about 2 months, and i have been having so many symptoms that my gp ran another panel, this time including FT3 and FT4 and anti-bodies.
my tsh this time was 5.12, and i don't remember the exact #'s on the rest, but they were "normal". What really honked me off was that this lab's reference range was 0.3-3.18, but my doc still said everything was "fine"!

Ok, I guess my question is , is it normal for a tsh to fluctuate like that within about 4 months, and would meds help me? I have lived this way for so long, that I honestly don't feel like I'll ever be "normal" again.

I am also wondering if I am pre-menopausal, which with my family hx, would not be inconceivable. My mother was 40 when she stopped having cycles, and my oldest sister who is 42 hasn't had one in three years, and another sister who is 38 is already skipping them.

Any advise about my appt would be great! What kinds of questions should I be asking??? thx for listening!

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Old 07-27-2012, 03:19 AM   #2
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Re: new here-seeing endo tomorrow.

Welcome to the board although I'm sorry for the reason you're here.

You want to ask to have the full thyroid panel drawn, being TSH, FT4, FT3 and thyroid antibodies relevant for hashimoto being antiTPO and anti-thyroglobuline. Always a good idea to keep track of your labs so you might want to ask for a hard copy afterwards. As you might know TSH is thyroid stimulating hormone produced by the pituitary gland so not an actual thyroid hormone, FT4 and FT3 are, so it's important to have those tested too.

I would also ask for a trial of medication. indeed your TSH is elevated. that happens when levels fall too low for the body's needs, the latter ones are the ones causing symptoms.

Good luck with your appointment and keep us informed

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Old 07-27-2012, 05:01 AM   #3
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Re: new here-seeing endo tomorrow.

I join Lisa in welcoming you to the board.

Please know that TSH fluctuates throughout the day in response to the body's needs for thyroid hormones.

Healthy people have TSH 1.0-1.5 so, the fact that your TSH has consistently been well above that tells you that you're dealing with hypothyroidism.

Please know that having FT4/FT3 levels in the normal range isn't good enough. As documented in thyroid textbooks, healthy people have FT4 levels near the high end of the range and FT3 levels in the upper third/upper quarter of the range.

If the endo throws any meds at you, I'm hoping they will be thyroid hormone replacement meds because it's clear you need them.

However, don't hold your breath because endos are often the worst at recognizing hypothyroidism - just as you've already experienced with your GP.

Please let us know how things go with the endo.

If you have anything less than a positive experience, we have some suggestions to help you find a thyroid-savvy doctor.
Graves' 2007...remission 2009....hypo 2010

Last edited by sammy64; 07-27-2012 at 05:03 AM.

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Old 07-27-2012, 06:51 PM   #4
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luvspnk31 HB User
Smile Re: new here-seeing endo tomorrow.

Thanks so much for the advise and the welcome!

I am pleased to report that my appt went VERY well! First, he did a thorough exam. He discovered that my thyroid is enlarged and firm, so he has ordered an ultrasound. I won't have that until this coming Wed. Because I just had a thyroid panel done 3 weeks ago, and based on those numbers and that fact that my tsh has gone up significantly in 3 months, he did prescribe levothyroxine.
The thing that I found the most impressive is that he actually TALKED to me. Not just at me, and it was not a rushed appt. I have never had any doctor who was willing to just sit and talk to me for 25 min- 1/2 an hour! That doesn't seem like a lot, but when most doctors are rushing in and out in 5-10 min, half an hour seems like forever! It was great! Sorry, I digress, lol.

I was also pleased to realize, after speaking with him, that just because the #'s are "normal" doesn't mean they're normal. My tsh is clearly elevated, but the other #'s fell in " normal" range. He was clear with me that he understands that just because my FT3 and FT4 are within normal range, they are not normal. And, that just because my Antibodies were normal with this blood test, doesn't mean they're not fluctuating. He also stated that HE believe's that any tsh above 2 should be considered suspicious and any over 3 is high. Apparently he's written medical papers on that subject. I will have to look them up!

So, I start my first dose of 50mcg levothyroxine tomorrow morning. Praying I will start feeling better in a week or two. He didn't want to get my hopes up too much , so he did say it could be longer before I start noticing a difference. Thanks so much for the support!

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Old 07-28-2012, 06:09 AM   #5
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Re: new here-seeing endo tomorrow.

This is beyond great news!!!

You heard EXACTLY what all hypo patients should hear - YAY!!!

You *might* start feeling better but, please know that it's not uncommon for some symptoms to worsen and/or new ones develop. It's all part of the painfully slow meds titration process.

Even though the endo sounds VERY promising, I suggest that you maintain hard copies of your labs....and also a symptoms journal as it corresponds to labs. This will help you help your endo identify your optimal levels.

I'm going to share what I did with my journal in a separate post (just for clarity).

Best of luck to you moving forward!
Graves' 2007...remission 2009....hypo 2010

Last edited by sammy64; 07-28-2012 at 06:11 AM.

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Old 07-28-2012, 06:11 AM   #6
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Re: new here - seeing endo tomorrow.

I can tell you that keeping a journal was key towards identifying my optimal levels.

I soon realized that noting "feeling good" or "not feeling good" on my lab reports wasn't enough.

I maintained separate Word documents that covered the period of time in between labs. This way, each document represented what was going on with me in relation to whatever dose(s) I was taking at the time.

I would title each document with a date range that reflected the date of the most recent labs and the date of my upcoming labs.

My daily entries weren't particularly long and they were based upon what symptoms I might have been dealing with at the particular time.

Even though I had easily 30 symptoms during the early months of the meds titration process, many of those dissipated once my FreeT4/T3 levels were above mid-range.

This confirmed for me that I was like many people in the fact that I needed both my FreeT4/T3 levels above mid-range to feel well.

I was then dealing with a cluster of fluctuating symptoms. Watching the patterns that developed after a dose increase helped me to realize that my levels weren't necessarily optimal just yet.

This period of time often showed an improvement of symptoms after a dose increase....and then a worsening of some before the time of my next labs. This is a typical experience that tells us our dose(s) and levels still aren't optimal.

Since each of us has his/her own typical cluster of symptoms, it makes sense to note only what applies to the individual.

Therefore, my journal consisted of daily notes about the quality of my sleep, digestion, energy level, strength, stamina and mental function.

I would also note anything that might have been going on that particular day that could have affected how I felt.

An example of this would be noting the chills I had at night and also noting I attended my son's hockey game and/or it was below-freezing outside. I certainly don't want to blame my thyroid for everything

You can only imagine my excitement when my journal entries only consisted of improvements. This was a sign that the labs I had 6 wks. after starting the particular doses could very well be my optimal.

Sure enough, my FT4 level came back around 90% of range (my optimal FT4 is higher than the 60-80% of range most people need to be symptom-free) and my FT3 level at 75% of range (typical for most people)

Moving forward from there, I continued to make occasional notes only if something questionable was going on. I found that there could be many days when I didn't make entries.

There were times when I found the need to make more entries because my digestion was slowing down or my sleep quality had deteriorated. Sure enough, those upcoming labs showed my FT4/FT3 levels to be lower in the range than the levels I had when I was symptom-free.

I had two times during the meds titration process when my levels optimized and I was symptom-free for about 3 months.

By sharing my journal with my doctor as it related to my labs and the times I felt best, she accepted my determination about my optimal levels.

Since my thyroid has been somewhat erratic, my doctor has me get labs every 6 wks. She has adjusted my doses (I take T3 & T4) to maintain my optimal levels.

This has kept me symptom-free and I feel awesome.

I share this with you in the hopes that it might help you to feel the same.
Graves' 2007...remission 2009....hypo 2010

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