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effected_orchid 04-26-2008 09:03 PM

Confused
 
I do have a question. I am 38 F and have been a thyroid meds for 16 years now......I read alot and find I have the same symptoms as everyone else at times BUT alas my thyroid doesn't seem to want to settle. My situation now is....I am on synthoid 137 and have been level there for over a year and now I seem to be on a swing again. My TSH is creeping. It went from 6.3 to 24 and I ending up in hospital and they drew blood again. I seem to have "perfectly healthly" blood, other than my TSH is now 51. They increased me to 150 mcg. I have not been out of bed really for almost 2 weeks.Today is the first day I can even think. My dr is sending me back to another endo. My question is does anyone else seem to have a roving TSH? It is no doubt the answer to why I have no energy, very dry, hair falling out, tired, sleep most of the day, muscle spasms, numbness, tingley and chest heaviness. Oh and a new thing is the huge boils??lesions or whatever you want to call them on my face. They removed a few and now say I have roscecia (sorry spelling) I just want to know WHY I am level for 5 years and then it goes crazy...level for 3 years and then crazy......Is it possible the thyroid is not the problem...maybe it is the symptom.... Just tired and needing to know I am not alone.
Thanks
Kathy

mkgbrook 04-27-2008 05:28 AM

Re: Confused
 
Are they checking just your TSH or are they looking at your FT3 and Ft4 as well? Have they tested you for Hashimoto's thyroiditis? Something is not right. You can not put your faith in your MD alone. They make mistakes and most are to busy to do the leg work and keep up with the most recent thyroid rules and regulations.

SO if you do not have a copy of your blood work, get it. Also if they have only run Total Ts and a TSH or just a TSH and T4 you need to look at your T3 levels. You may have levels in the pits. And your T4 is just fine. This could be indicative of Cushings or hyperadrenalism or just poor conversion of T4 to reverse T3.. the inactive T3 component. Something is up and it is time to figure out why and possibly go MD shopping.

I have had to do my own diagnosing and treatment fight recently. I have begun to compile a thread for all that are facing this issue. Check out this thread. I think some of the information may be helpful in your continuing quest for optimal thyroid care.
[url]http://www.healthboards.com/boards/showthread.php?t=597479[/url]

MG

effected_orchid 04-27-2008 05:16 PM

Re: Confused
 
Thanks

They also test my T3 and T4 and both are right in the middle of proper range. I can not remember the exact number. My Dr is sending me to another endo because this has happened more than once. I don't understand how the T3 and T4 are good and the TSH is creeping. The problem is the more i read the more confused i get. My dr said even though I am taking the 137 (now150 mcg) My body is not registering that it's there. I also have had a sinus infection for 2 weeks and of course the asthma kicked in....I just feel like I have been kicked hard the last couple of weeks and nothing is working. I am on my second round of antibiotics for the sinus infection, they upped the synthroid to the 1.5mg and steroids for the asthma...I am from Canada, and our medical system runs a little different. The waiting list for these specialists are also forever. I have had 5 endos in the past and the ones that seem to understand see me once or twice and retire or a few have passed on (unfortunately before they finish giving me a diagnosis) The last one I saw said I needed to see the heart specialist which in turn said I am too young for this...... Most of the time I feel good. I don't understand what throws me off so bad...If I knew I could quit doing it and maybe this merry go round would stop. I don't know if it makes a difference but I also take B-12 shots.

K

effected_orchid 04-27-2008 06:11 PM

Re: Confused
 
MG

I was reading your thread....Wow I just learned more in an hour and the last 16 years. I have been told over the years I was Hashi, graves, and the last I had was over compinsated hypothyroidism. Do you know what that means??

You have done so much research and you are amazing. I think you have a wonderful sense of humour...don't ever lose that. Glad to have met you. I will try and get the results to post. Drs here don't really like to give that information. I was surprised the hospital did.

Thanks
Kathy

mkgbrook 04-27-2008 06:58 PM

Re: Confused
 
Orchid,

If you are in the US or UK, by law they can not deny you your records; I believe that the Canadian NHS is modeled after the UK one and thus the same holds true. I am glad that my post has helped. I am the professional student type (2 masters and working on the Ph.D) with MDs in my family and circle of friends. I refuse to see my MD relationship as anything less than an equal partnership. I am ground zero and KNOW what my body is doing.. even if I do not know the exact reason why. If they give me leway to research and run the tests I ask.. I am right 95% of the time. It is not rocket science to treat someone! It is a matter of keen observation to family history, environment, and symptoms. In many cases MDs are so busy.. triple booked and just want to grunt and toss pills at you or brush you off. It is in a sense our job to make certain they see us as more than cattle. Seriously, think of it..you mill about in the waiting room.. when called you get shuffled down the shoot to your stall in the barn.. the Farmer comes in and takes what he wants.. pats you down and back out you go. Many treat us as no more than talking cows. MOOOO! Sorry I couldn't resist. I used to try and be sympathetic to the MDs and their schedule. But I have spent too many three hour waits in the lobby and more waiting in a room for a 5 minute. "You have a sinus infection.. what antibotics do you want? Okay here you go." Now that this Hashimoto's has manifested and I spent five years treating the symptoms because all said I was too young to have a thyroid issue.. I will not tolerate an MD telling me it is in my head, or I am not happy. It has nothing to do with being happy or mental. It does have to do with me being angry at the suffering my mom and her sisters faced.. at the possible issues my son may face due to them not testing me during my pregnancy when i asked them TWICE.. at the complications I have suffered as my MDs did all t hey could to treat the symptoms while the source of those symptoms just got worse. SO, IF anything I am intolerant of incompetence and the more I hear here and speak to MDs it makes me wonder just how qualified they are to treat people's health.

If you learn as much as you can.. and you can learn all you need about thyroids. You do not need to know the exact mechanisms.. knowledge of the general function and your own body will tell you all you know and support the blood work findings. You are not alone, I wish thyroid incompetence was less common.. BUT it is not. You are now in a position to educate yourself, fight for your care and the care of those around you. Stick with us, we can learn from and teach each other. ;)

MG

effected_orchid 04-29-2008 01:38 PM

Re: Confused
 
MG

Hi,

I am sorry to say. I have been so sick over here. I crawled into my dr. on Monday and he determined the meds the hospital put me on are reacting with my thyroid. He said GET OFF THEM. First he said it looked like I was swinging to Hyper and then when he looked at my meds. I really like him he seems to know what he is doing BUT unless I am half dead he will not make a move he just sends me to an endo which take 6 months to see here.I am still waiting for a replacement for the endo I saw 2 years ago that retired after seeing me once. He is in a walk in and apparently can't admit me to hospital either aaarrrggg. He did run all new blood work to see what is going on. He wants to compare with the hospital blood work. Since stopping the antibiotics I am slighly better but now have bright yellow (can't even call it the runs, because it is just water). Do you know anything about drug interactions? The hospital also had me on advil and T-3's.....I have quit all accept the synthroid 150 and the symbacort for the asthma. I think the drugs kill you more than the pain. Any ideas?

I hope you are doing ok. I was reading your fantastic long diagnosis. I think you should specialize in thyroid treatment when you get you PHD. I notice alot of people have the same issue of being sent to all these specialists. I have been to an interist, endo, gasto,gyno. I wonder why there is not a thyroid specialist.....or am I just behind the time.


Kathy

mkgbrook 04-29-2008 06:38 PM

Re: Confused
 
Well I am specializing in it.. as a patient. ;)

I would have to go through medical school to become a thyroid specialist. I would if I could build a time machine and tell myself to go to med school versus graduate school. I will do what I can here and for my family and friends.

There are thyroid specialist. Most are associated with universities and have made thyroids their pet projects. However technically an endocrinologist should be able to handle thyroid issues. But you have to take into account how many thyroid issues they encounter and treat. Not enough.. more than 1 in 10 have Hashimoto's antibodies and over 50% are destined to activate (1.3 in 20) and eventually spiral into Hashimoto's hypothyroidism. Now think of how many people you know... if your circle is wide enough.. you should have Hashimoto's sisters/brothers right there with you.. but do they know it? Or are there issues blamed on other things? Right now diabetes is the dominant endocrine focus, it kills much quicker than low thyroid function. Sooo if you had diabetes you would be a shoe in for quick treatment. Now we have to diagnose ourselves for the most part and sweet talk, harass, cry, beg, and whine to get them to do the tests that will confirm or deny our conditions.

Is there a practicing medical hospital near you? Maybe you can get in there? Look on line and research their faculty. You maybe able to enter into a medical study and get better care.

MG

It is a sad state on current thyroid care and knowledge. The issue is not enough of us get involved and we are technically a medical minority that suffers in silence. Well I am not one to suffer silently. I will make myself heard and find everyone I can... and see that they get proper care.

effected_orchid 05-01-2008 12:05 PM

Re: Confused
 
Well I crawled into my daughters appointment and HER Dr did not like how I looked LOL so he is going to POKE the Endo that is supposed to see me. I called the clinic to see if my results were in and I got a if there is a problem you are called. If you don't get a call there is no problem. I also asked how long before i hear from the endo referral and she said she would check on it. Still waiting to hear. AT this point MG I wish the farmer would just call me to the barn already......

Hope your day is going well.
Kathy


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