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Discussion Starter · #42 ·
Doctors have been pretty much Un helpful to me obviously but in all of my posts it's supposedly my fault for not being better at making these decisions for myself as if I have control over them sending in paperwork for a pre authorization still waiting. ...? My iron and vitamin D are low my B 12 is mid range so it's looking okay I'm not sure about being hypo since I really don't feel hypo symptoms I'm not thinking that I'm hypo anyway I'm definitely concerned about my iron this is all new to me and my thyroid lab test is coming up soon yes thank you it is a very hard loss for me and unexpected one at that
 

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By Iron IV, do you mean intravenous iron? In the meantime, have you started an iron supplement just to get things going? What are your next steps? Sometimes, when insurance denies an initial request, if the patient and doctor really push for it, it will be approved the second or third time.

You WILL get through this, blackngold, and you WILL get better. Please believe that!
 

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Discussion Starter · #48 ·
Just regretting havin gotten a TT all together :( people just need to do their due diligence when it comes to their own health & this forum is bullshit. Just do what you feel is right for you and do not listen to doctors or anyone else!! do what YOU feel is right because that's what matters most is what you want not the doctors !!
 

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Discussion Starter · #50 ·
I have met a few good people on this forum that have been a help to me during hard times but to sit here and say that your levels need to be at a certain range or to say that you should get surgery is just crazy talk to me I never in a million years would have gotten RAI because of all the stuff I've read on here and other places like Facebook so I felt like because my doctor was pressuring me to get definitive treatment and everyone saying how much better they felt was all just BS I don't feel any better than I did being hyper my levels were controlled anyway I just want people to know that it really is a no win but try for a remission if there's no sign of cancer don't let the doctors decide and don't listen to other people cause everyone is so different that's what made it so hard for me to make this decision cause we all respond to treatment differently !!
 

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blackngold, your Ferritin and Vitamin D are very, very low. Both of those will cause you to feel fatigued. Are those two issues being treated?
 

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You're right: surgery is a very personal decision, and I'm sorry to hear that you don't believe you fully considered all aspects of it and now you regret your decision.

That said, I am going to lay out some tough-love here in the spirit of helping you move forward. I think a big part of what's preventing you from feeling better is your attitude/outlook. Please hear me out. What I see in your posts is an overwhelming amount of negativity and a lack of productive thinking and problem solving. You appear to be getting frustrated and giving up, blaming doctors, blaming us, etc. I believe you would be better served by taking a step back and asking "What can I do, what can I say, how can I have a different conversation with my doctor, or how can I switch to a new doctor in order to start feeling better?" The current approach is clearly not working for you.

Your labs are showing definite room for improvement with non-thyroid levels. I know you said your current doctor said he/she didn't want to increase your thyroid meds, but what about those other things? Ferritin? Vitamin D? Those need to be addressed, too. You're going to continue to feel terrible until those things are addressed.

How persistent have you been with this doctor? Have you truly been assertive with your needs, or do you simply take no for an answer? If you've truly been persistent and assertive, well, then it's time to look for a new doctor, in my opinion. Your care is up to YOU. Own it. Take charge. Get what you need. Don't give up.

Now, I'm not kidding myself. I know this message will not be received well. But I do hope you at least take a moment to consider what I'm saying, because I truly do want you to feel better.
 

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Discussion Starter · #53 ·
I have taken a step back that's why I posted everything I have on here after being screwed over a hundred times by doctors who just don't care yes going to a new one on Thursday my attitude and Outlook is my choice and because of the lack of care I have been receiving !!
yes my choice to get a TT !!
it's all a no win
I wanted to get on with my life but this is a huge step backwards for ME
if I can help anyone else I Want To Just Post Get all the information in advance make NO MISTAKE be Sure that your doctor's are going to have your Best interest at heart and know what you're getting into just ask all the dumb questions ahead of time and before doing anything permanent get 5 more opinions get your iron checked all that stuff ahead of time and yeah if your doctor doesn't care get a new one
 

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It took me almost 5 years to dial in my doctors and my dose post TT.

Mind you - I was within 10mcg of T4 or 2.5mcg of T3 hormone for many of the first 5 years. I was slooow in making changes. I still struggle w insomnia and fatigue - hmm, that may be connected ;-)

3 endo's and 2 GP's later - I found my Dr. Mc Dream - We work together and he prescribes what I need to stay in the 3/4 of range.

Thyroid disease is NOT for the WEAK!

Keep the faith!
 
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Sometimes life does give you a raw deal. Not much we can do but try to do better. I agree with Lovklyn and Octavia BnG. We all react differently, but even that said I'm not sure I have seen anyone on this board that had Free T4 as low as I had (it was checked twice). And I have my thyroid supposedly.

What I can say is this: on more than one occasion people on this board would say something along the lines of, "I am not sure how you can function." But I did. Looking back, I was probably completely clueless to how sick I had gotten or too stupid to lie down. My body didn't want me to function, but I did want me to. There is that stubbornness or spite that helps get through each day in the hopes that it would get better, My current journey is shorter than Lovklyn's, but we have to be better than our old selves. It's not some kind of empty euphemism, I really mean it. There were days where the only thing that got me through the day was knowing that I couldn't simply stop and didn't want to stop.
 

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Discussion Starter · #56 ·
Yeah the doctors don't care about being 3/4 range they only care that you're within the range and they say that it's all a bunch of crap if you try to tell them about that
 

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I do agree with you that most doctors might not care about the 3/4 range. To them being in range, means their work is done and you are cured. This is where being an advocate for yourself really takes some finesse. I also feel that if a patient says "i saw this on the internet"may drive doctors crazy. Instead I said, I learned this in my support group which is this message board.

I do not convert to T3 well, or maybe at all. I take cytomel and still am at the bottom of the range, and sometimes do not hit that mark. Yet, I feel well.

At a follow up after surgery, the endo said that my numbers were great and that my medications would not change. I was cold all of the time, even in her office. I could see there would not be a positive outcome from this appointment so, I said thank you and left. She chased me down the hall, saying that I could see another doctor in their practice if I wasn't happy with her. I replied, "no thank you". I had a big melt down in my car and drove home.

Some time later, it could have been weeks or months, I was seeing my counselor I remarked at how lousy I was feeling and was a real low point.I had been seeing a ND and was taking NDT by then, still searching for the magic potion. She suggested that I see my primary care provider who was in the same building, in fact she made the appointment for me. The appointment happened quickly. Blood was drawn and my TSH was 16. A quick appointment was arranged with the ENT that did my surgery. The upshot of this appointment was that I was under medicated. He asked my why I had stopped seeing my endo and I told him of my experience there. He said I will refer you to an endo "who is human" and he was in the same endo practice which I dreaded.

The new endo prescribed 125 mcg of levo which was what I took at the beginning of this terrible tale. I was not encouraged with this but did like the doctor. I asked him if we could agree to test TSH, FT3 and FT4 to begin with. He said it was not necessary in his opinion but I asked if he would humor me and I had insurance that would cover it. So, he agreed.

My results came back with FT3 below range and FT4 below mid range. He said we could try a couple of things. In my mind, I was screaming "T3, T3, that is the answer" but I listened to his suggestions. The first was to increase T4 and hope that I would start converting or we could add T3 but he is a very cautious guy. He explained that T3 is a powerful drug. I asked if we tried one and if it did not work, the other option was still on the table? He said yes. So, I opted to value his cautiousness as much as I wanted T3, I went with an increase in T4. He reviews all of the hyper symptoms each visit because this is important to him that I know these things and what ill effect might happen. I am real familiar with being hyper and so not want that either.

Fast forward many many months, I take 125 mcg of levo 5 days per week and 112 mcg 2 days per week as well as 5mcg of cytomel 2 a day. This concoction was not quickly realized. it took work on both of our parts. I am grateful I have a cautious endo.

I debated whether to respond in such length, but my "feel great happy place" was not a quick fix, in fact, I was pretty low at times after the surgery and on occasion, nasty Graves reared it's ugly head. I also struggle with very low Vitamin D and iron levels so at almost 5 years out, I still take a daily replacement of those two things too. Some time after surgery, I was diagnosed with 2 other autoimmune illnesses bringing my count to 4, but I truly feel great. I think time, connecting with a great doctor and learning what it takes to make my body run well. Some of those things are not medication, exercising and eating correctly are a big part, for me.

Sorry for the book but it truly took me a lot longer than some folks to feel well but it was worth it.
 

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Yeah the doctors don't care about being 3/4 range they only care that you're within the range and they say that it's all a bunch of crap if you try to tell them about that
Exactly - that is why I was seeing 2 GP's at one time ( getting prescriptions from both) . I actually showed up to my current doc on the med's I take today - that was in 2009.

Sometimes you need to "work the system".

Finding a doc who ignores TSH is the key and that is like a needle in a haystack - unless you go to an integrative or bio identical hormone doc but they tend to over prescribe T3 med's if you ask me, wanting everyone in the top of FT-3 range. My head would explode if I were top range.
 
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I love reading this stuff. You guys have been a wealth of information for me. I just started with a new Endo because my last one didn't really listen. I asked that my next blood work include TSH, FT4 and FT3 and she agreed. Right now I am on the roller coaster of energy. It makes it tough to get through work on a daily basis. I have more down days than good days.

I do believe having my thyroid removed was the best thing and the pathology report confirmed that. It wasn't cancer but it was a mess.

blackngold I wish the best and I hope it gets better. I hope you don't give up.
 

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Let me also add that I suffered from anxiety, depression and high cholesterol before my surgery. The anxiety is gone and my cholesterol numbers have come down with some help from meds. I am tired a lot but I can't say whether it is depression or not. I remain cautiously optimistic.
 
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