# Feeling slightly dumb :/



## mouthy83 (Jul 18, 2012)

Just wondering how so many of u know so much. Is it from experience, research, good doctors or a bit of everything??

I was diagnosed with Hashimotos in Sept 2011 and Palindromic arthritis in May 2012... and the only stuff i know is what ive researched myself and from my own experiences.

Im from the UK and my doctors don't seem to share much info, or even refer to specialists. What should i be doing? Researching more myself or asking the doctors for every last detail?

Help is appreciated


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## CA-Lynn (Apr 29, 2010)

BOTH. As simple as that.

Make a list and take it to your next appointment. Then, a minute into the appointment, try to position yourself so that you block the doctor's exit through the door. Drag out the list and don't let him leave until every question is answered.

In the UK your physicians are probably hurrying patients in and out, so it's really up to you to do your research first. Get the basics understood.

For those who don't know, palindromic arthritis is inflammatory, though does not leave joint destruction. Attacks come and go. It's thought to be a derivative of rheumatoid arthritis.

You'll get a lot of questions answered about the arthritis on this website:

http://community.arthritis.org/forums/Forum1831-1.aspx

http://www.palindromicrheumatism.org/

http://www.mayoclinic.com/health/palindromic-rheumatism/HQ01171


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## Lovlkn (Dec 20, 2009)

Experience #1 for sure. I try very to comment on my experiences. Keeping good records of doses, how I felt and lab results is key in having a normal life once finding out you have thyroid disease.

Research #2 although in the beginning it was #1. Finding support boards where people post their experiences was more educating to me than many of the medical articles or trials that I have read.

#3 would be a good doctor - has anyone found a good doctor yet?

I am on doctor #6 since DX, although my 1st endo lasted until my TT - then all of a sudden she got hung up on dosing from TSH. I run 0 TSH so that was a problem, then on to her partner, then onto another endo then GP #1 and GP #2 which I saw at the same time for 2 years who both let my TSH remain low before insisting I lower my dose based on TSH. Now we are on # 6 who is a DO that for some reason is fine with my lack of TSH yet feels my use of Cytomel is "unconventional" per his notes in my file. He gives me what I need prescribed and I go in every 6 months or as long as I can stretch it out for labs. I hope to stay with him forever - not because he is good but rather because he lets me dose my self the way I "feel" and I feel best with no TSH and a mid range to slightly above FT-4 and FT-3


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## mouthy83 (Jul 18, 2012)

Can i ask what a DO is?

6 doctors.. eek!! I have never seen the same doctor twice about my hashimotos, i've only been able to see which ever doctor is free but there is 1 i like (helped me alot with my kidney trouble in the past and he's the one who pushed to get me diagnosed with PA) so im going to try to stick to him, maybe i'll just simply ask him to be my constant doctor??

CA-Lynn... thank u for the links, i will read up right away  i have a rheumatoid specialist which i have seen once, the other times he has had a supply there (last 1 didnt even read my notes, didnt know i had been diagnosed and basically told me i didnt need to be there, that there was nothing wrong, oh i sure let her have it!!)

My main concern is not having ANY info on the hashis (sorry, i should have wrote my post when i wasnt so foggy lol) but i will corner a doctor, sit my kids infront of the door so he cant leave and ask for every drop of info. I will start my list now.

Thanks both


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## Lovlkn (Dec 20, 2009)

What are you expecting from your doctor? You say you plan to trap them in the office and ask questions - what do you want them to tell you?

So much of dealing and treating thyroid disease is up to YOU - YOU need to know what you need and ask for or insist on it for your treatment.

Being in the UK you have more limitations but you still need to be involved in your treatment.

I don't ask my doctors anything because they rarely give me the answer I expect - for the majority they are all clueless which is frightening. They go by protocol written in some medical book or recall back on the afternoon they were taught about thyroid disease.


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## mouthy83 (Jul 18, 2012)

I just want to find out THS levels (if thats the right thing ) and any blood results that i have... normally they take bloods and say 'take this medicine' and thats it. I also have no idea if they've done the t3 t4 tests. So i just want a report really, so then i can organise my thoughts and maybe get a better idea on why i have had 2 miscariages since May.

Just need a little bit more understanding about what exactly is going on in my body so i can do some research and think about other routes i can take.


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## CA-Lynn (Apr 29, 2010)

I don't know what the protocol is in the UK regarding copies of bloodwork, but in the US it is the patient's property. [I should think it would be true in the UK since your taxes pay for the tests.]

The way I see it, the doctor works for ME and therefore I am entitled to pick his brain to answer questions.

If your question is about miscarriages, perhaps you should be addressing them to a ob/gyn.


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## mouthy83 (Jul 18, 2012)

Unfortunately they wont refer u to a ob/gyn unless its recurring (i am 1 short as the doc so nicely put!!) and she said as it is comman for hashi and palindromic arthritis patients theres not much more they can do. And then she went on and on about im lucky to have the 2 i have and maybe i should be happy...which dont get me wrong i am extremely happy to have my 2 girls. But answers or help would be nice.

i will repost tomorrow when i have more answers so im not bothering u all too much  then at least i know what im dealing with.

Thanks again for posting, it really is appreciated


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## Lovlkn (Dec 20, 2009)

It looks like your option is to call the office and ask nicely. If they refuse then be more persistent.

Sorry to hear about your miscarriages. I had 2 and a very caring MD who was infertile so she referred me to a specialist after my 2nd. [[[hugs]]]


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## mouthy83 (Jul 18, 2012)

I have to go in tomorrow anyway as my neck is swollen (just today) and ive been struggling to swollow for a few days now, maybe a week. so i will get in as many questions as possible and i'll book in for a longer consultation to discuss a few things at length.

Thanks for the huggs... sending u some welsh 'cwtches' back.


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## Gwen1 (Sep 3, 2011)

I agree with Lovlkn when she said much of our thyroid treatment is up to us. WE are the only ones who know how we feel. The doctors read our labs and are supposed to take our symptoms into account, then base dosaging and adjustments off of that. 
So we really need to be familiar with low and high thyroid symptoms.

I finally have an endo who understands thyroid. She gets it. She has told me more about thyroid in my 10-15 minute appointment than I've learned in 16 yrs. from the last endo.

Doctors cannot treat us by lab results alone. We are MUCH of the equation. My last endo based my dosaging strictly off of labs. I was undermedicated much of those years and over medicated. That approach does NOT work.

I've gleaned alot of info from the forums from others' experiences. Especially helpful was learning the symptoms of too low and too high levels of thyroid.


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## sleepylady (Mar 18, 2012)

Mouthy83-
A DO is a Doctor of Osteopathy. Sometimes they can be a little left of center(which is what I was hoping for). Unfortunately, I got the one who follows the traditional medical plan!

I haven't been diagnosed with Hashimoto's. I believe I may have it, but cannot get diagnosed with anything-thyroid or otherwise.


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## lizzm (May 21, 2012)

If your thyroid is not under control it can cause miscarriages. The best thing you can do is read and research and learn as much as you can on your own so when you go back to the doctor you are armed with knowledge. I am also on my 6th doctor and I can say I finally found someone who cares, understands and listens. A lot of doctors don't explain things at all when I first got diagnosed with Hashi's the Endo said just as I thought you have Hashimoto's thyroiditis but it's no big deal it's just an autoimmune disease. I have spend countless nights staying up late reading and researching. Go to this site: http://www.thyroidchange.org 
and click on resources then websites and then you can choose hypothyroidism & hashimoto's they have a lot of links to websites. This is a new website that was just launched before this I learned a lot at stop the thyroid madness they have that link too. Good luck


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## mouthy83 (Jul 18, 2012)

thank u for the link, i will read up tonight after work.

Before my last miscariage i had never felt so good, i hadnt had a migrain for a few weeks and even the headaches i get during pregnancy were minimal. Even my brain fog had passed, i could get up and take my girls to the park without dying with exaustion after half an hour. i think thats why it doesnt make sence to me. i felt the best id been in years.

since my last mc tho i have gone down hill rapidly (only 10 days ago)... i feel back to square 1, got an app tomorrow.


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