# New and have some questions/need help



## jmill (Mar 23, 2010)

Hi everyone. I've been lurking in the background trying to learn as much as I can about thyroid problems and reading everything I can on the internet. I believe I have a thyroid problem but I'm having a very hard time finding a doctor who really knows anything about diagnosing or treating it. I can't get in to see an Endo without a referral and I can't convince my PCP to give me one. Here's what's happening.
Last summer I suddenly developed severe muscle and joint pain (excruciating pain) along with sudden severe spikes in my blood pressure. I'm cold most of the time and I've been taking my temp twice a day with two certified/calibrated thermometers and it's always low. I have motility problems with gas, diarrhea, constipation, and I developed daily headaches which prior to this I never got headaches, EVER. I'm dizzy and lightheaded every day, I have numbness and tingling in my fingers, carpal tunnel like feelings in my right hand, and TMJ on an infrequent basis. I was so exhausted for all of Oct, Nov, Dec, Jan, and most of Feb. that I couldn't go out of the house. Several times a day I get what I call "adrenalin dumps" where I feel flushed and my BP goes way up. Going up one flight of stairs leaves me short of breath. I also developed severe palpitations. Several trips to the ER for high blood pressure got me labeled as a mental case. The ER doctor, a friend of my PCP, told me right out that there were only two conditions which would cause these BP spikes: a heart attack or an anxiety attack and said "you aren't having a heart attack". I went to see my PCP and reviewed all my symptoms. All he heard was "blah, blah, blah, blood pressure, blah, blah, blah" and changed my blood pressure meds and told me to quit checking my blood pressure at home. He put me on a beta blocker for the BP and that did help the palpitations and reduced the severity of the adrenalin dumps I am getting. He then referred me to a kidney specialist to find out why my BP was spiking.
The kidney doctor checked me for a lot of things such as pheochromocytoma, adrenals, kidney disease, TSH, T3, and T4. I asked him about checking for Free T3, Free T4, antibodies, etc and he just stared at me for a minute and said "I don't know what you're talking about. This is all we need to check for thyroid". My TSH came back normal and he said my T3 an T4 were OK. He wouldn't give me the numbers. He said everything was OK and changed my med's and took my BP. It was 171/97 and he said that it was probably OK most of the time and "come back in four months". One of the meds he changed was taking me off the beta blocker. The next morning I woke up with a pulse of 150 and BP of 224/113. I called my PCP and he just said to go back on the beta blocker and keep taking everything else the kidney doctor gave me. Now I'm over medicated and feel worse. I seem to have symptoms of both hypothyroidism and hyperthyroidism.
Having gotten nowhere with either doctor since then, I found another doctor who specializes in neurologic autonomic disorders who is willing to try to find the root cause of my problems. We have ruled out coronary problems recently with stress tests, echo cardigrams, etc. The new doctor tested me for TSH and Free T4 but that was all she tested for thyroid. I go back to see her in a couple of weeks and I'd like to ask her to run more thyroid tests since it seems after reading on here that there are a number of important tests that need to be run. Sorry for the long post but can anyone suggest what tests I need? From what I see on here there are a number of tests needed to find out what type of thyroid problem one could have. Any suggestions? Thanks and I'll try to keep it shorter the next time.


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## hillaryedrn (Dec 14, 2009)

Hi there! Glad you came on and posted! Ok, you hit a personal nerve with the whole MD not listening. That's a gripe I have myself. Do this: go to your MD's office or call (Do NOT make an appointment) and request a copy of your entire medical record. They might have a fee involved, but that's ok. Your medical chart is YOUR LEGAL RIGHT TO HAVE and they CANNOT deny you that. You will probably find information you didn't know you had. I know I did when I requested and received a copy of my daughter's chart. Anyway, once you get your chart, you will have lab values which I'd love for you to post here along with the ranges that come with them.

As for the MD not running the frees, Andros I believe can tell you a way you can get that tested on your own. She has better info on that than I do.

You sound alot like me, tho. Too many symptoms that the MD's are wanting to ignore. My biggest advice? Don't give up. Do everything that you can on your own. Maybe now is the time for a new PCP?? I don't know, but it's something to consider. You need a MD who listens TO YOU, not dismisses you. Let me know how it all goes!!


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## jmill (Mar 23, 2010)

Can someone suggest which tests I need performed to confirm thyroid with a somewhat normal TSH. I really could use some help here. I seem to be having symptoms of both hypo and hyper. I'd like to take this info to the new doctor I'm going to who knows I have a problem but isn't sure what tests are required for thyroid. I really could use some help, I've been very sick for ten months and not getting any better. In fact, I'm getting worse. Thanks for any help you can give.


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## Twin1 (Mar 21, 2010)

Just wanted to let you know you are not alone! This seems to be a common scenario here: Mixed symptoms and 'normal' test results. I'm new here too and everyone is very supportive and knowledgeable! Hang in there and I hope you get some answers soon!


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## Andros (Aug 26, 2009)

jmill said:


> Can someone suggest which tests I need performed to confirm thyroid with a somewhat normal TSH. I really could use some help here. I seem to be having symptoms of both hypo and hyper. I'd like to take this info to the new doctor I'm going to who knows I have a problem but isn't sure what tests are required for thyroid. I really could use some help, I've been very sick for ten months and not getting any better. In fact, I'm getting worse. Thanks for any help you can give.


I read your original post and I am appalled and saddened. Not only are you being fluffed off but on a personal basis, your doctor is not very nice to you.

That said, I so suggest that you find another. Also, I personally suspect that you are hyperthyroid and TSI (thyroid stimulating immunoglobulin) lab test would settle that issue for the patient should have no TSI at all and if he/she does,that means hyperthyoid.

Here are the tests I suggest to all........

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

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

As for getting your records, if they give you any flack; quote the HIPAA law to them.

And since you have to be your own advocate, I do suggest you go to that link and look up the labs so you know what you are requesting and why.

We are here for you and will help you as much as we can.

Welcome and I am so sorry you have been treated so horribly.


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## hillaryedrn (Dec 14, 2009)

Thanks, Andros! See, I knew she'd let you know what labs you need. Alot of doctors don't like it when you request labs, but there's absolutely no reason why they should refuse. After all, you're the one paying them! Let us know how it goes!


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## jmill (Mar 23, 2010)

Thank you everyone. I'll let you know how it goes.


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## Andros (Aug 26, 2009)

jmill said:


> Thank you everyone. I'll let you know how it goes.


Please do and believe it or not; we have a bunch of care bears here so we "will" look to hear from you!


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## Lovlkn (Dec 20, 2009)

Unfortunately in many thyroid dysfunction situations prior lab work is the ONLY thing to make doctors make a move as far as prescribing medication to relieve thyroid dysfunction symptoms.

Check out HealthcheckUSA and use discount code 12345 and order at minimum a TSH, FT4 and FT3 
www.healthcheckusa.com/lab_tests/Thyroid_Screenings/Thyroid_Function_Profile_with_TSH,_Comprehensive

If you have a record of irregular labs it's much easier to gain treatment.

Early in thyroid dysfunction lab's can be normal so frequent labs if you are having symptoms is necessary to be able to bring into a doctor so they can see with their own eyes. It stinks we have to do this but it's just the way it is.


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## jpoteracki (Mar 23, 2010)

I am also new here and just wanted to let you know you are not alone. I have symptoms of both hyper and hypo (just depends on the day). Within the last year is where my endo diagnosed me with Hashimoto. I have been having symptoms of thyroid issues since 2003 and all the doctors kept telling me it was nothing. My symptoms did go away for a while so I just forgot all about. Over the past couple years my issues came back. When I went to my new PCP I told her of all my problems, history etc... she ran blood work and said everything looked fine. I knew everything was not fine or I wouldn't be feeling like crap ALL the time with no explanation. It was then I took it upon myself to find an endo and just skip over her BS. I am now finally getting answers and the treatment I need...or so I hope, lol

Never give up on getting the help or treatment you need & deserve!! We are not all crazy, we just want to feel normal again!


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## jmill (Mar 23, 2010)

I've had problems for years but didn't put it all together. In 2005 I suddenly got sick from May to September. I had unbelievable digestive problems and "allergies". Never found anything wrong and it subsided. I had endoscopies, barium swallows, CT scans, and a multitude of other tests and the problem just sort of relieved itself. It didn't go away, it just subsided.
In 2007 it came back with a vengence. I was horribly sick all year. I went to every kind of specialists you can think of. I was bounced around from my PCP to an allergist, to a ENT, to a gastroenterologist, to a pulmonologist, and he referred me back to an allergist! My insurance company must have spent $20,000 on tests and the 18 different perscriptions I was on. Nothing helped. Again, it just sort of subsided. I can't believe that during all of this no one suggested seeing an endrocronologist. When I tried to see one on my own, none of them would see me without a referrel. This really got depressing. I got to the point last Oct where I could no longer work or function. I keep swinging between what I believe is hypo and hyper. Hopefully, I will get some resolution with my new doctor. I really appreciate all the supportive responses on here. I feel sorry for everyone else but it's comforting to know you're not alone and others are in the same boat and can offer support and advice.
One other question if anyone can answer it: I was found to have a small nodule on my thyroid but the doctor (kidney specialist "treating" my uncontrolled blood pressure) said it was nothing. The other day it was very tender on one specific spot on my throat on the right side of my larynx. I was pushing on it trying to feel if there was a lump or anything there. The next day my ankles were very swollen. Can you "squeeze" anything out of your thyroid by doing this and cause your ankles to swell up? I've never had swollen ankles before but they were very swollen along with my feet. I'm going to tell the doctor about it. This morning they look fine. Any ideas?


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## Andros (Aug 26, 2009)

jmill said:


> I've had problems for years but didn't put it all together. In 2005 I suddenly got sick from May to September. I had unbelievable digestive problems and "allergies". Never found anything wrong and it subsided. I had endoscopies, barium swallows, CT scans, and a multitude of other tests and the problem just sort of relieved itself. It didn't go away, it just subsided.
> In 2007 it came back with a vengence. I was horribly sick all year. I went to every kind of specialists you can think of. I was bounced around from my PCP to an allergist, to a ENT, to a gastroenterologist, to a pulmonologist, and he referred me back to an allergist! My insurance company must have spent $20,000 on tests and the 18 different perscriptions I was on. Nothing helped. Again, it just sort of subsided. I can't believe that during all of this no one suggested seeing an endrocronologist. When I tried to see one on my own, none of them would see me without a referrel. This really got depressing. I got to the point last Oct where I could no longer work or function. I keep swinging between what I believe is hypo and hyper. Hopefully, I will get some resolution with my new doctor. I really appreciate all the supportive responses on here. I feel sorry for everyone else but it's comforting to know you're not alone and others are in the same boat and can offer support and advice.
> One other question if anyone can answer it: I was found to have a small nodule on my thyroid but the doctor (kidney specialist "treating" my uncontrolled blood pressure) said it was nothing. The other day it was very tender on one specific spot on my throat on the right side of my larynx. I was pushing on it trying to feel if there was a lump or anything there. The next day my ankles were very swollen. Can you "squeeze" anything out of your thyroid by doing this and cause your ankles to swell up? I've never had swollen ankles before but they were very swollen along with my feet. I'm going to tell the doctor about it. This morning they look fine. Any ideas?


By manipulating and pressing on an already disease thyroid, you can cause a reaction of thyroxine dumping and other process' such as inflamation and yes, that could cause edema to occur overnight. Indeed.

I am sure others will agree having had the same experience or similar. And the more I read about you, the more I think you should have an uptake scan to check for cancer. And the thryroglobulin as well as thyroglobulin Ab.


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