# NeedAnswers



## Shannonbell (May 18, 2013)

I am so glad to find a group of people who know so much about what i have been going through since sept. 2010. It all started with a visit to my gp. He said we needed to do some labs since i was now 40. The results showed my thyroid was a little out of whack, so he started me on levo at 50mcg. All was fine for about 3 weeks and then 1 morning at work i started feeling like i was going to pass out, i mean everything would go black and then pop back on and then i started having what i now know is a panic attack. So went to er, hung out and they said everything fine. Everything ok for a couple of weeks and it happened again, so back to er and guess what everything fine. Went to see gp and i had echo of heart and carotid arteries(everything fine) oh did i mention i stopped the levo thought it was causing it. Then they sent me to eye doctor for weird visual disturbances(everything fine). Then i wore a holter monitor for a week(everything fine), then i went to a sleep clinic ( mild sleep apnea) so i lost 20lbs down to 205 i'm almost 6ft, so that corrected that. Dr. Said i needed to keep taking the levo so i started back for weeks i felt terrible off/on. Finally i asked could i stop the levo for 6 wks and retest my levels, we did and my levels came back normal. This went on for awhile feeling good then bad. Then i had another bad attack and went to the er. Er doc said i needed a little attenolol for fast heart rate( upon standing bpm 120-140). I thought this was the miracle cure. Went back to gp month or so later because feeling really tired and wore down ask him to check tsh again, he did and it came back at 65. Started me on 25mcg of levo waited 1 month tested again and came back at 109. This scared the gp, so on to endo. She bumped me up slowly to 150 over the next 6 months. Everything going fine, until one sunday morning my stomach was hurting all day and into the night got up next morning and my appendix ruptured off to surgery. 3wks recovery and back to work. Worked 1 wk and had bad gallbladder attack so back to er and off to surgery for bad gallstones, whew! Is this ever going to stop! Well after that worked for 4 months up until this april and noticed i was feeling bad and had gained 10lbs, so had levels tested back at 10 on tsh so now i'm on 175mcg. And waiting to be retested. Oh some things i forgot to mention 1) testosterone low taking replacement 2) vitamin d low taking 10,000 units a day 3)endo said i have hashimoto's because of anti-body tests. 4)now starting on lexapro to help with the anxiety

i know thats a lot to read but there it is, when i look at it, it doesn't describe the last 3 years very well, but it is hard to put the pain and aggravation on paper!

I would also like to apologize for any hormonal comment about any woman i ever made, because i had no idea what you where going thru until now! So please forgive this man, he has been brought to his knees by this and much empathy for any person suffering with chemical stuff who otherwise looks fine, and that's why everyone thinks we're crazy.

I WOULD LIKE TO KNOW IF ANYONE THINKS KILLING OFF THE THYROID WOULD BE THE BEST THING TO DO AND IF IT WILL GET RID OF ALL SYMPTOMS AND RETURN MY LIFE TO NORMAL?
:sad0049:


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## Octavia (Aug 1, 2011)

Welcome! You've had quite the rollercoaster ride over the past couple of years.

I don't know if "killing off" your thyroid is an option (they normally do this for Grave's disease, which does not appear to be what you have), but surgical removal may be an option. Have you had an ultrasound and biopsy?


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## bigfoot (May 13, 2011)

Ugh... I hear ya'. Nothing like struggling with all sorts of stuff for years. Some of what you are describing sounds very familiar.

You're absolutely right, the testosterone and thyroid issues are no picnic. It's good they found the sleep apnea, but that is a bummer about everything else in the meantime, too. Mind if I ask what your testosterone levels are, and what kind of hormone replacement therapy (HRT) you are on?

The thyroid and testosterone are intricately linked together; you can't just adjust one, you need to monitor and adjust both, as needed. The lightheadedness and feeling faint also sounds very familiar to me. Still haven't been able to nail down an answer on that one here, although one doc is checking for dysautonomia.


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## Shannonbell (May 18, 2013)

My total testosterone in july 2012 was 187.4 range 196-782
free testosterone was 4.58 range of 5.2-18
bio-available testosterone 100 range 119-470
percentage of free testosterone 2.4 range 1.5-3.1
shbg 22 range 12-59

i started taking 1ml/200mg bi-weekly, at home injections
level went to 900, backed off to 1/2m. , level went to 200 at end of2nd week. Now taking 3/4ml and level is staying about 400-600

my main problem is this is causing me to miss a lot of work. I am wondering if other people are having the same problem? Even when i am at work i have to force myself through the day. I'm begining to wonder if this ever gets straightened out or do you just have to deal with it fooorever!


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## Andros (Aug 26, 2009)

Shannonbell said:


> I am so glad to find a group of people who know so much about what i have been going through since sept. 2010. It all started with a visit to my gp. He said we needed to do some labs since i was now 40. The results showed my thyroid was a little out of whack, so he started me on levo at 50mcg. All was fine for about 3 weeks and then 1 morning at work i started feeling like i was going to pass out, i mean everything would go black and then pop back on and then i started having what i now know is a panic attack. So went to er, hung out and they said everything fine. Everything ok for a couple of weeks and it happened again, so back to er and guess what everything fine. Went to see gp and i had echo of heart and carotid arteries(everything fine) oh did i mention i stopped the levo thought it was causing it. Then they sent me to eye doctor for weird visual disturbances(everything fine). Then i wore a holter monitor for a week(everything fine), then i went to a sleep clinic ( mild sleep apnea) so i lost 20lbs down to 205 i'm almost 6ft, so that corrected that. Dr. Said i needed to keep taking the levo so i started back for weeks i felt terrible off/on. Finally i asked could i stop the levo for 6 wks and retest my levels, we did and my levels came back normal. This went on for awhile feeling good then bad. Then i had another bad attack and went to the er. Er doc said i needed a little attenolol for fast heart rate( upon standing bpm 120-140). I thought this was the miracle cure. Went back to gp month or so later because feeling really tired and wore down ask him to check tsh again, he did and it came back at 65. Started me on 25mcg of levo waited 1 month tested again and came back at 109. This scared the gp, so on to endo. She bumped me up slowly to 150 over the next 6 months. Everything going fine, until one sunday morning my stomach was hurting all day and into the night got up next morning and my appendix ruptured off to surgery. 3wks recovery and back to work. Worked 1 wk and had bad gallbladder attack so back to er and off to surgery for bad gallstones, whew! Is this ever going to stop! Well after that worked for 4 months up until this april and noticed i was feeling bad and had gained 10lbs, so had levels tested back at 10 on tsh so now i'm on 175mcg. And waiting to be retested. Oh some things i forgot to mention 1) testosterone low taking replacement 2) vitamin d low taking 10,000 units a day 3)endo said i have hashimoto's because of anti-body tests. 4)now starting on lexapro to help with the anxiety
> 
> i know thats a lot to read but there it is, when i look at it, it doesn't describe the last 3 years very well, but it is hard to put the pain and aggravation on paper!
> 
> ...


Good grief! Unfortunately it is not unusual for a person with thyroid disease (autoimmune) to have appendix, GB, kidney stones, salivary stones, slow intestinal motility and much much more. After all, when one domino is down, they all go down.

It is also quite common to find one's self low in testosterone, Vit. D and Ferritin.

I would like to recommend that you insist on an ultra-sound and the tests listed below.

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

Are you still on Levothyroxine and if so, how much. Your doc needs to do all of the above and definitely run the FREES.

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.


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## joplin1975 (Jul 21, 2011)

Re: work...I think in the end you need to do what you need to do...

That said, I had undiagnosed Hashi's for over a decade and then was horribly under-medicated after surgery (TSH at 121). So I get the horrible awful feeling. I do. But my priority was 1) keeping my job so I could pay the bills and 2) keeping my job so I had insurance.

What worked for me was to determine if anything would change or improve with me calling in. Was I contagious? Would I make things worse by going in? If the answer was no, then you go in and power through the day in anyway you can.

Again, do what works for you...you'll see some posters take lots of time off and others don't. Just don't jeopardize your health insurance!


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## bigfoot (May 13, 2011)

Shannonbell said:


> My total testosterone in july 2012 was 187.4 range 196-782
> free testosterone was 4.58 range of 5.2-18
> bio-available testosterone 100 range 119-470
> percentage of free testosterone 2.4 range 1.5-3.1
> ...


Oh man; you were low, low, _low_! Those "normal" ranges for Total T. are pretty ridiculous. I've tanked down into the 200-230 range and it is not pleasant. You actually have a good thing going with home injections -- that is the gold standard if you can find a doc who knows what they're doing. I've read that doing weekly injections (instead of bi-weekly or once monthly) can really help things along.

How did you feel at around a Total T. of 900? Was the doc quick to drop you back down just based on labs alone, or did you actually feel crummy and/or really irritable? Everybody's ideal testosterone level is different, but the total range should be topping out at 1000-1200, not 782 as the lab ranges seem to imply.

As far as work, folks here are right, you gotta do what works best for you. While this won't come across as rays of sunshine and smell like roses, I have lost one job and had to leave another. It got to the point where I just couldn't force myself through the day anymore. Hopefully you don't come to that point, and this stuff gets sorted out ASAP. But just to cover your bases, you might see what your employer has for short-term and long-term disability coverage. These can be very beneficial, and allow you to focus all of your energy on healing. If you ever were to go the SSDI route, be sure to lawyer up first.

With the anti-anxiety and anti-depressants... same thing. You gotta do what ya' gotta do to work through the short-term stuff, while focusing on fixing the problem(s) long term. Just be sure your doc (hopefully) knows what they are doing in that arena, ideally see a psych.; discontinuing these sorts of drugs can be a total PITA. Some are easier to get off of than others. Lexapro, if I remember right, can be downright nasty.


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## Shannonbell (May 18, 2013)

thanks for that joplin. that is what i have been trying to do now for about 3 years, i even stepped down from a supervisory position so i could maintain my job. its just these horrible attacks that happen especially in the morning. its like if i can make it to about lunch sometimes everything will iron out for that day and just when i think its getting better it starts up again. sometimes i can get it to go away and sometimes i can't and have to get up and go home and rest. i am blessed because i am on fmla for this! thanks for the advice, it helps to talk to people with the problem and know that they are powering through.


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## Shannonbell (May 18, 2013)

bigfoot
at 900 i felt fairly well a little bit like my motor was running fast, but the main thing is that it was breaking out my face so i cut myself back. i also love to work, i mean i worked 60 plus hr weeks for the past 20years before this happened and it has really thrown me for a loop! but, i do have short and long term disability but i am not sure how all that works, if it should come to it, hopefully it will not. thanks for the replies


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## bigfoot (May 13, 2011)

Working 60 hour weeks definitely could have been burning the candle at both ends, leaving you more susceptible to health problems, immune problems, the sleep issues, weight gain, poor nutrition, low vitamin levels, etc. If you can look into the stuff that Andros and the rest of us are mentioning, that would be good, and might give you a few puzzle pieces to match up.

A big thing with the disability (whether short-term, long-term, or SSDI) is to have a doctor in your corner. Heck, this goes for your health in general, too. Somebody who can document what you are going through and that you trust. I know that's easier said than done, but it's something to work at if you aren't already lined up with a good doc. If you aren't already, request and keep copies of all your labs, test results, dates of doctor's appointments, contact info, and so forth. Good to have if you ever need to reference anything.


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