What is Graves Disease
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative ex...
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Hey there, Cindy
Ya know, I've been thinking about your situation. I think you know we all have asked you to post your labs because, truly, that will be your first step towards feeling well. If you're not feeling well at this juncture, we are confident it is due to the fact that you are not being medicated properly. The fact that your dose keeps getting changed from 5 mg to 10 mg and back is a BIG red flag for us. You've been on this journey long enough that you should be stable at the same dose....and, if anything, that dose would slowly be getting decreased. Many of us have been overmedicated on ATD's and have suffered with hyPO symptoms as a result. Now, just because an FT4 level is "in-range" does NOT mean it is the right level for the individual. If a person is having any types of symptoms whatsoever and is "in-range", that tells us that their FT4 level is not in the right place for them. Thyroid hormone levels are like shoe sizes......most women wear a size that ranges from size 4-10. The average woman wears a size 7. That average woman will not feel comfortable in a size 6 nor a size 8 - right? That's why each of us needs to find our "best place" within the FT4 range. Most people feel best at mid-range FT4, at least (just as most women wear "mid-range" size 7). You posted last month that your endo doses based upon TSH which is dead wrong - you know I have a thread on here to explain why. Here's a link to a site that has a very comprehensive list of hyPO symptoms......Guess what? congestive heart failure is a symptom of hyPO http://www.stopthethyroidmadness.c... As we've all told you before.....it is clear to us that you are not being medicated properly. We are concerned about you considering a permanent treatment choice in light of this fact. It is unrealistic to think that a permanent treatment choice will solve your problems because, if you are not being medicated properly now, you most likely won't be medicated properly after a permanent treatment choice. Permanent treatments do indeed leave you hyPO - you have no thyroid to produce the thyroid hormone you need for your body to function properly. If your doctor doses based upon TSH, he/she will most likely not prescribe enough thyroid hormone replacement for you after a permanent treatment. Look at those hyPO symptoms - that is what you can expect after a pertmanent treatment if you don't become more proactive in your care. Sorry for such strong statements but I am aware of the story of another forum member. She chose a permanent treatment, was grossly undermedicated.....wound up in the ER a few times....it wasn't corrected.....she went into a coma, suffered brain damage as a result and a cancer that was in remission re-emerged due to the trauma of it all. Such a sad story and SO preventable. Hope you can understand and accept the motivation behind this thread......I put my heart and soul into my posts and don't want anyone to suffer needlessly due to inept care. All the best, Carol Posted on 11/04/09, 09:11 am |
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Carol, you are the best ! I have had a rough few days - and if it wasn't for finding support on this site - I swear, I'd go crazy! (you know what I mean). You just think to yourself "how can I feel this bad over and over? I must be crazy!" Then - can you believe...I go to my doctor TODAY, in fact, and when I tell him how bad I feel - he has the gall to say to me "why are you so tired? why are you crying all the time?" And I say back (but I said it nicely) - gee, do you think it might be my thyroid and its depressing me??? You hit it on the nail - I am not being medicated right. He just writes down my symptoms and says "let do more bloodwork" and that was the end of the session. Nothing else! I mean - what am I paying for? There is an answer besides going between lets take 5 mg. OR lets take 10 mg. Come on already ! And this is my second doctor. Well, yes - I found "another" one but because I am a new patient can't get in til December. But I am hopeful she will help me! Thank you, thank you - thank you so much for your informative and helpful words. I am not getting the RAI - I see exactly what you mean. If they don't medicate me right now - what makes me think they will after such an important procedure. And that story where the patient ends up "serious" - oh my God !
Thank you for sharing. Stay in touch with me. Cindy R 
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Cindy
Thank you SO much for this post!!! I am beyond passionate in my mission to get out the message about doctors medicating us properly. I have spent countless hours on forums and doing research and so many people suffer needlessly, including me and most of the people who come here. The worst part of it all, most people come on here feeling very ill.....how the heck can anyone be expected to absorb a message, let alone make a good permanent treatment decision? Yet, endos push most of us for a permanent treatment during our very first appointment. Those same endos often push us for the same permanent treatment when we choose ATD's. I know, because that was the case for me with my first 3 endos.....my first two endos overmedicated me and, during the 15 months, I was under their care, I had all of three periods of time during which I was completely, 100% the "old" me.....one period lasted 3 months....another 1 month....and the final one all of two weeks. So, you're talking that for 4 1/2 months out of the 15, those endos messed up with my dosing and kept me feeling less than 100% - sometimes I was just "off".....others, I was on my knees in hyPOhell....my last visit to hyPOhell was the longest and worst. NO MORE!!!!! Endo #3 lasted only after she called me to read off the very first set of labs she ran for me.....she erroneously assessed my condition, made incorrect deductions as to the cause of it and made a dosing recommendation that would have sent me down to a hyPOhell much deeper than any other I'd experienced I could have well wound up in a coma if I followed her recommendation. And, this is an endo that thought a permanent treatment was my best option. Mind you, each of the two permanent treatment choices - RAI or surgery - might seem "simple enough" but they each come with risks and those risks should be fully known. The same doctors that push RAI or surgery during the first appointment are the same doctors that don't tell you enough about the procedures. It's freakin' scary. This is why I am here.....and I came here long before I met endo #3....can you imagine if she was someone else's very first endo????? I am beyond thrilled at YOUR latest sequence of events....I've always said I feel I will have accomplished something on here if I can help keep just one person from one trip to hyPOhell. Those 4 1/2 months of being the "old" me told me that it is possible to feel well and have Graves' disease.....it all boils down to finding your "right size" FT4 level and partnering with a doctor who will medicate you properly. We'll be here for you every step of the way for as long as you'd like company on your Graves' journey :) All the best, Carol
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