# Desperate for knowledge- HELP! Please!



## proud-armywife (Jul 29, 2011)

I have posted recently about my troubles with the fc doc I am currently with. I did ask to see someone else because I needed more. I do not feel well and am trying to get to the bottom of this. I have celiac and am gluten free (2008) Diagnosed with hashimotos around feb 2011. I was only diagnosed by blood test. I take synthroid. But have not had any other care pertaining to diagnosis. Went in about 2 weeks ago and needed an increase of synthroid it was bumped from 75 to 100. I challenged my doc asking for thyroid panel and I was denied. Today I recieved this email:

"I am so sorry for the delayed response. I was able to review your records and have another provider assist in reviewing. From what we can see everything with the plan of care is on track. Dr. contacted an Endocrinologist on your last set of labs and from their take, they did not see any specific concerns at that time.

I think we need to follow back up with Dr. and ask for the referral to Endocrinology. This way you can have the specialists take. Also, I was wondering if you have ever thought about transferring your PCM to internal medicine? I of course, do not want you to leave the program, but I do want you to feel that you are getting the best care available. If you hang in here with us, I know you will get better!!

Dr. is very reasonable and if you have concerns please address them with her. She is there to listen and manage our families health status. I am also happy to assist with anything that you might need. Please let me know where you would like for me to engage."

I feel dismissed. My life has been somewhat at a standstill with this disease. Please help me. What tests do I need? Why do I need them. What can these tests do for me-how will it change my plan of treatment. I need a letter with facts about this to send back explaining why I am not happy. I need it said scientifically black and white..... Can you help me? I need to get better.All of my labs are posted on this board under my screenname I have not posted often-:sad0049: Thank you


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## sjmjuly (Mar 23, 2012)

Just my two cents worth? Maybe Synthroid isn't the right medication for you. I have Hashi's too and went gluten free after I was diagnosed. I have had stomach issues for YEARS.
I tried a synthetic medication (Levothroid) when I was first diagnosed and OMG it made me worse. I felt awful and ended up in the ER. I went to a naturopath and she started me on Nature Throid (dessicated hormone) and Thytrophin PMG. I also take Selenium with my regular other vitamins. 
Some people just don't well with synthetics. I know I didn't. Some do great, (my mother has been on it for years) but I feel like a whole different person taking Nature Throid. I am sorry you feel so crappy. Been there done that and it isn't any fun. 
As far as tests go, you need all the typical ones, TSH, Free T3 & 4, TPO - all the antibody tests, and maybe have an ultrasound? The thing is, we are all so different, that what helps one, my not help someone else. My TSH went from 4.84 to .62 and the doctor decreased my Nature Throid. Within two days I felt like crap again and bumped it back up. Two days later I felt great again. Those damn test results just don't tell the whole picture. 
I think a Free T3 would really help you though. When mine is low I feel totally lousy. I don't think I convert T4 to T3 as well as I could and that's why the Levothroid didn't work because it's a straight T4 drug. Nature Throid has some T3 in it too. 
Just a thought.


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## CA-Lynn (Apr 29, 2010)

I didn't get the idea that the doctor was dismissing you at all. I came away with the clear feeling that he was giving you what you wanted - another doctor. An internist is a good idea, because it could be your problem isn't thyroid at all.


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## proud-armywife (Jul 29, 2011)

Thank you both for your response...I appreciate it. The labs they are referring to in text is cortizol. I feel dismissed not only because of the letter but because of the unwillingness to conduct certain tests. I suppose I am defensive.......I still feel like I need to have the information for my piece of mind and understanding. All of your feedback is so important to me Thank You


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## CA-Lynn (Apr 29, 2010)

I completely agree about having the information to have peace of mind. I think going to another doctor might provide you with an opportunity to plead your case.

That said, the military has its rules......and the doctors are probably locked in.


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## Karinp (Jun 14, 2012)

I think it's great that the doc suggested you go see someone else and the endo. I just got diagnosed yesterday by an endo when prior my regular doctor didn't think we needed to look into anything further. Your doctor probably realizes that is their expertice and can take care of you better than they can!!! Good luck to you!!!


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## joplin1975 (Jul 21, 2011)

I feel like this answer might sound a little dismissive so if you "hear" that, please know that's not my intent!!!

I'm wondering if you can tell us your concerns, specifically, or perhaps what you would like to happen. No one likes feeling blown off by our medical providers, but assuming cancer has been ruled out, (I would ask for an ultrasound if you haven't had one) regular blood tests and adjustments to medication are more or less it. That is, there's no cure, only management. I think some people have had lots of luck with dietary changes, etc, but it looks like you are already gluten free, so I *think* that means the options are somewhat limited...

Sorry I couldn't be more helpful!


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## proud-armywife (Jul 29, 2011)

Thank you all! I am still left with questions.... I have only had a thyroid panel that was in Feb 2011 and an antibody test to diagnose hashimotos. I have had to up my meds 3 times since then because of elevated tsh. I feel so crummy most of the time, I am having a hard time telling what is what. So for instance I have alot of aches and pains and have been unable to recognize uti's until they have gone into kidney infections and I only know because of the fever. And I don't know if my tsh is creeping up unless my doc feels it is neccessary to test for it. I have requested thyroid panels for the reason of antibodies based off of my readings on the board- but she only treats the tsh and refuses to do anything further. What does your doc do for you? How do you manage it. Knowing what your results are - high antibodies, low, what do you do with those results. Are they just for knowledge? Do you take something else? How do you manage this disease? I feel like my life is slipping away..... I need to get my life back.


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## CA-Lynn (Apr 29, 2010)

My doctor doesn't keep testing antibodies. Once was enough. TSH and T4 checked quarterly. But in the end, my endocrinologist treats me on the basis of how I'm feeling.

That said, she has her hands full because a lot of thyroid symptoms are synonymous with other autoimmune disease symptoms. The bloodtests are really just a guideline.


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## proud-armywife (Jul 29, 2011)

CA-Lynn
Thank you! I was approved to see endrocronology so I hope this is the next step in getting better. YAY!! I love the idea of quarterly testing- appreciate your input!


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## webster2 (May 19, 2011)

YAY! Good news, indeed! I hope it willbe soon!


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