Help! Thyroid out of control or doctors out of control?

[cantsleep2007]

Hello, my name is Teresa and I am 48 years old. I was diagnosed with graves disease in 2003 and had Iodine radiation treatment for this. At that time my symptoms were extreme weight loss sometimes pounds over night. It was scary and has been since my diagnoses. There is no real way to sum this up quick but I will try. I have been fluctuating hyper to hypo since 2003 with TSH of anywhere from 0.296 to 211. I have been told that I suffered a thyroid storm when I was at the 211 and that this was a high level but people have been much higher. My main question is. How is it that suddenly with the new doctor I am seeing she is telling me that a TSH of 1.5 is normal and also considered hyperthyroid?? I am so confused now that I dont know what kind of blood tests they are doing on my thyroid. All they say is the TSH thats all I hear. I have ask this doctor several times how that is considered normal as she says and when did the levels change? Have I misses something here? Endocrinologists that hve treated me over the years have always tried to keep my TSH in what they would call a ballpark area because I have never leveled out seems like it use to hang around 2.0 2.5 give or take. This would mean 15lbs up then 15lbs down with weight. I have been able to handle that for years now. Unfortunately the health department I am going to at this time will not change my levothyroxine at all. In January 2013 my levels were 0.296, April 2013 levels were 1.8 and current test shows levels of 1.5. I am so confused. I am on 100 mgs of levothyroxine  but am feeling terrible! I have gained around 65 lbs since june of last year and have no energy, walking has become difficult over the past few months. Exercise?? what is that?? I don't have enough energy to walk up and down my stairs more or less walk even 20 feet! This doctor keeps me where I am even though I am still bouncing around she refuses to change my thyroid meds. Over the years I have been on anywhere from 175 mgs to as low as 75mgs. Please someone give me an idea of what is going on. This doctor refuses to change meds and I am stuck with not having an endo doctor rite now because I have medicaid care source and its hard to find a family doctor more or less an endo. I feel like I am going to explode with all of this weight. I was around 155 lbs for years now but as of yesterday I am now a whopping 220lbs and still climbing. Oh and please please no diet is working for me or is going to so long as I have no metabolism at this point. This doctor has sent me to dietician after dietician and of course reminds me constantly that my body fat index is almost 40. Can anyone please help!

[dianalyn]

The symptoms you described, tremors, seizures, memory loss, dizziness, poor balance, and sometimes just too damn tired to get out of bed are all symptoms  very familiar to me. I was hospitalized in 2007 for uncontrollable convulsions and psychosis. Of course they thought I belonged on the mental ward at first, but my TSH was around 500, I had encephalitis, severe kidney infection, and a few other issues. I was diagnosed with Hashimotos Encephalopathy.  Very rare, and even harder to find a good endo doc!
I think as gimel commented before, TSH levels alone can not give your doctor the information needed to correctly diagnose what is happening in your body. My normal TSH range is between 300 and 600. (yes those are hundreds, no decimal). Increasing or decreasing my thyroid meds does absolutely nothing but frustrate my doctor.
I am on clonazepam for seizures, lisinopril for high blood pressure, and levothyroxine of course. I can no longer work, but I can live a boring, but semi normal life without suffering.  
I'm not saying hashimotos is what you have, just that there are more thyroid disorders than hyper/hypo.  And I am offering to listen, possibly help you feel a little better knowing you are not alone.  I do wish you the best and hope you find a better doctor!      

[gimel]

Have you contacted the doctor whose name I gave you?  He seems to accept most insurance.  

[cantsleep2007]

Hello again and thank you once again for your response. I am unfortunately still going through well, what I can only call Hell. I am so very desperate for someone to listen to me. I was in the hospital again last night because of course my TSH and I will say again only my TSH is now 1.23 and not one doctor anywhere will say anything but, "you are within the normal limits" then tell me I need to see a dietician, or have mono, or have just plain fatigue!! I cannot stress enough how upset I am at this point! I feel like no one will help me and having caresource through medicaid is wonderful for many people and I know it is good for most other specialists. I cannot find a decent endo that has good hearing. Well not one that will see me because of my insurance. I dont want people to misunderstand me here. I am glad that I at least have insurance for myself but I would rather have some expensive blue cross or anthem or anything that doesnt make me a disease to some of these doctors! If there were ANY way possible for me to work god I would. Unfortunately my thyroid disease is killing me slowly and painfully!! I dont understand how these doctors can say that with the NEW NORMAL levels they go by now can be used for someone like me who has had fluctuating thyroid levels for over ten years now and have NEVER leveled out!! Oh but now, these same doctors are keeping my TSH levels,(that by the way are steadily going down..since june of last year with several TSH only tests) are telling me I am within the new normal range! Oh yes I am without a doubt rite where these new boundaries say I should be but I have always been told by my old endocrinologists that they wanted to keep my levels between 2.3 and 2.9 just to keep me healthy. I am sorry for taking up so much of your time hun I really am. I am just so very upset. since june of last year I have gained over 75lbs, have been told I am for sure now the early stages of DEMENTIA! and have to start a medicine back up that has made me sick the two other times they have tried it. Dear god help me... and not to mention my entire body is slowing down at a rapid pace and guess from what/ HYPOTHYROID DISEASE. I can no longer see well, cannot use the bathroom without assistance, shake uncontrollably without seizure meds, am off balance without meclizine every four hours, the weight gain... I cannot even go there anymore. I had a thyroid storm in 2009 and fear that the one coming now will kill me and it is coming slowly. Well I need to stop for now I just need someone to understand, maybe even reassure me that I am not crazy? Thamk you for listening : )

[MattC70]

Do your best to find a different endo.  Someone who won't monitor and adjust your medication, or won't try to figure out what's going on is dangerous to your health, and is just wasting yours and the taxpayers money.

[gimel]

The frequency of misdiagnosis and under treatment of hypothyroidism is really hard to believe, yet it is just as bad as it sounds in your post.  Far too many doctors have the "Immaculate TSH Belief" and only want to use TSH as the only test by which to diagnose and treat a hypo patient.  That is terribly wrong.  Then if the doctor goes beyond TSH the usual test will be for Free T4.  If the Free t4 test is anywhere within the reference range, then the doctor will frequently tell you that you are in the 'normal' range and your symptoms are not due to thyroid.  This is also very wrong.  

The reason both approaches are wrong is first that TSH is a pituitary hormone that supposedly accurately reflects levels of the actual thyroid hormones; however, TSH cannot be shown to accurately correlate with either of the biologically active thyroid hormones, Free T3 or Free T4, much less correlate with hypo symptoms.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.  This is only logical since Free T3 largely regulates metabolism and many other body functions.  The second reason is that
he ranges are far too broad to be functional for all patients, due to the erroneous way the ranges are established.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf

So what you need most is one of those rarities called a good thyroid doctor.  Believe me they are hard to find, but in case you would be interested in a doctor in the Canton area, I'm sending a PM with link.