1jammer, now 2 late

[1Jammer]

gimel --

There are no more tomorrows -- today's tomorrow is here.  I could not find your (message before the last), so I tried for another title to maybe get this one to you.  

I may use the letter -- whether to this doc or another is uncertain.  Depends on my motivation, I think -- which really stinks at the present.  You've been great, however.

[gimel]

Just make sure it is free T3 and free T4 (FT3 and FT4).  Best to you.

[1Jammer]

Just a little PS.............

I sent 2nd letter and reading materials to my endo. and asking if he would consider putting me on thyroid medication on a trial-and-see basis, and his nurse called and said he wanted to do another TSH, T4 and T3 on me this coming Sat. morning.  If it reads the same as the last (4) it will tell him the same, right -- "The TSH (etc) are normal".  But what I'm going in and let him do it.  Wish me luck!

[magpieannie]

Many people who have thyroid issues have low vitamin d and b. Keep persuing the thyroid! Still praying for you! Keep your chin up!

[1Jammer]

Well, I sent a letter to my endo. with material about my thyroid symptoms and blood tests, and asked if he could start me on a trial basis of meds, so now I just have to wait.  

I've just recently talked with others on Mary Shomon's site, who seem to believe it isn't my thyroid, but a Vit. D deficiency which the doctor is treating me for, along with the Vit. B-12 shots, so I'm really confused.  I guess if he doesn't start me on medication, I can either seek help elsewhere, or forget about the whole da** thing and accept that I have what I have -- whatever the he// that is.  But since my tests are all apparently normal, maybe I'm looking for a scape goat for gaining so much weight, and that my fatigue and lethargy are just plain laziness and I'm searching for something that really isn't there.  I'm not feeling sorry for myself, but if I sound like I am, I sincerely do apologize.   I'm just tired of trying to figure out if it is all in my mind or if it's a real problem.  But your caring and posts have helped me a lot.  Thank you.    

[1Jammer]

Ok, I'll give it a shot.  Getting home from a picnic late last night with pain nearly unbearable helped push me, but waking this morning with severe pain in my joints and feet, and aches through my entire body like I've never had before was even more convincing.  I'll send him the articles, and at the appt will don myself in an armoured suit to deflect the razor-sharp barbs he might send out to me.  Could things POSSIBLY get any worse???
I'm about up to here with doctors, let me tell you.  Talk to you later, and thanks!

1Jammer

[gimel]

I really think you should enclose the copies of those articles in that letter we went through, and deliver them to the doctor.  That way he will have an opportunity to read and reconsider his decisions before you go in for the appt.  If you just go in cold, and challenge him, I don't think he will do anything  but get defensive and give you the same old answer.   There's nothing to lose and maybe a lot to gain with that approach.  JMHO

[1Jammer]

Hi, Gimel!

Actually, I did print out and intended to send in the materials before the appt., but I honestly don't think he'll read them.  After all, they think all "hypos" or "maybe I am hypo" people are out of their minds anyway due to test results coming back "Normal".  I don't know whether to wait for my appt. in 2 weeks and go in there, show the articles and "gently demand" that I be put on T4; or just drop by tomorrow morning; ask for copies of all my test results and saying that I have found an endo. who believes in symptoms more than test results; wants to address my 3 goiters; and is willing to see me right away.  

Gimel, I am more tired than ever; moodier than a woman on major PMS, have more aches and pains each day; and am so gd fed up with complaining and getting no results.  I desperately want to do the right thing, but I am so confused at this point.  And as you can see, am a d*** coward!

[gimel]

Did you decide to send the doctor copies of the articles we discussed, along with the letter?  Or are you just going to walk in and push him to prescribe meds for you?

[1Jammer]

I have a plan.  YOU come with me to talk to my endo!  LOL  

Actually, my initial thought WAS to go in there and tell him to give me just 3 or 4 weeks on T4.  He can monitor me all he wants and I'll comply; and if things do go out of whack, take me off it -- it's that simple.  If he agrees, great.  If he refuses, I'm outta there.  And not to complain more, but lately along with the hair coming out in clumps, my legs and feet just ache like crazy, and my moods are right up there with "You didn't have your morning coffee did you???"    

[Smilerdeb]

My attitude would be with the Doctor..."Is there any harm on trying a T4 med and should it put my levels 'out of whack' then I will come off it.
I told my Endo (first appointment and there has only ever been 2 , 2nd one to book in for RAI) that I had lost all faith in Doctors and Endos.
Needless to say...this was the truth and she didnt take it too kindly.
BUT she did ring my Doc and I was immediately scheduled for a TT.
Fate had it that I suffered 3 episodes of thyroid storm within those 2 weeks and ended up with RAI and THEN keyhole TT.
TT was too dangerous at the time.
Maybe it is wrong of me to say it but how many times do you have to beat yr head against a brick wall?
YOU know your body better than any Doctor and if you arent happy,......I'd go shopping.
FOR ANOTHER DOCTOR.
I have seen an Endo twice in nearly 3 years.
My Doc does all the consultations with me.
My Endo was fired after the 2nd appointment.
I cannot complain about my Doc but it take a 'little persuasion' to get him to come to my 'side of the fence' so to speak.
Fate had it that a few weeks after RAi was agreed on...my Doctors Mother was diagnosed with Graves and Hyperthyroidism so basically ..he started to learn from me.
It was THIS forum that taught him a lot.
I would go in with printed articles for him to read (at his request) and he will be reading this posting now lol.
He reads the postings here whenever he can lol.

[1Jammer]

By the way, I have been losing my hair for several months now -- so much of it, that even the endo noticed!  However............he did not suggest thyroid medication OR hormone replacement at all; and I noticed on the testosterone %, FREE, it was in bold, and had 2.20 H    The range is 0.50 - 2.00.  What in God's name is he waiting for -- me to keel over, or aren't my test results "bad" enough???

jammer

[1Jammer]

No, I didn't read your posting about the Butcher, but I'll bet it's great!  I'll have to look it up and read it.  Wish I'da thought of that!  lol

I'm deciding now whether or not to go to this same endocrinologist, or simply find another.  I'm having a difficult time trying to make him understand, and after reading some information recently regarding how docs feel about simply "leveling" the TSH with minimal medication, I am more convinced than ever that I need to get answers from someone who cares enough to try.  

I'm not sure how to respond on the 'friends' site, but I will study it and see what I have to do.  Your family is fantastic, however!  And I am so glad to hear you are feeling better.

[Smilerdeb]

I know where your coming from......

Umm...did you ever read my posting and journal about 'Getting the Butcher to take my thyroid out?"

Graves Rage lol (hehehe) ...but sure as he!! made my Doc take notice and been great ever since.
Boy...those days I wanna forget so do know where you are at.

[1Jammer]

As a matter of fact, I believe did have a test for antibodies on 7/31/09:  On the test report it was called:   THYROID PEROXIDASE AB:  
In range <10   Ref. Range: <35 IU/ML  U

Another test was:  Thyroglobulin AB     In Range:  < 20    Ref. Range:  < 20  IU/ML    U
T4, Free:    In Range:  0.9      Ref. Range:  0.8 - 1.8 NG/DL
TSH 3rd Generation:  1.30    Ref. Range:  0.40 - 4.50  (7/31/09)


--------------------------------------------------------------------------------------------------------------------------------
The following values I've listed just to let you see how the ranges varied on specific dates:

TSH - 7/17/06      -- 2.42       Total T4 - 9.30    Ref. Range:  4.50 - 12.0  
TSH - 4/16/08      -- 2.00
TSH - 1/7/09        -- 1.53          
TSH - 7/29/09      -- 1.79          
TSH - 7/31/09      -- 1.30       T4 Free - 0.9

So as you can see, and according to each doctor, they're all well within the normal range, and I (according to them) have no reason to believe otherwise.

And to: Smilerdeb --
"Normal" happens to be the favorite word of all docs apparently, as is the "fabulous, one-and-only" TSH test.  I'm a firm believer in "If it ain't broke, don't fix it"...........but if it IS broke, it sure would be great to have SOMEONE around to fix it.  And quite frankly, I don't think this dr. I'm seeing is ever going to try to fix it, and I'm coming very close to calling it quits with him and finding someone who actually HEARS WHAT I'M SAYING about SYMPTOMS.      

.
                                    

[Smilerdeb]

All I have to say to these tremendous postings is.......

Ask the Doctors to DEFINE.....the term NORMAL.
In the thyroid world there is no such thing as NORMAL lol.
Never has been a word used in my vocabulary either.
The word just does not exist.

[dani2776]

The antibody test for Graves (autoimmune hyperthyroid) is called a TSI and read the following about Hashimoto's (autoimmune hypothyroid).  It is because my wonderful endo ran the appropriate tests, the antibodies, it was FINALLY discovered that I do have a thyroid problem and as he says, you cannot rely on TSH as a sole diagnosis.  Symptoms are the key!!!  Let me know if you have any questions, and good luck!!

In Hashimoto's, antibodies react against proteins in the thyroid gland, causing gradual destruction of the gland itself, and making the gland unable to produce the thyroid hormones the body needs. The first evidence of autoimmune thyroid disease is the appearance of thyroid peroxidase antibodies, called anti-TPO antibodies.



This test goes by a confusing number of names, including:



• thyroid peroxidase (TPO) antibody (TPOAb) test,

• thyroid peroxidase autoantibody test,

• antimicrosomal antibody test, and

• antithyroid microsomal antibody test

  

Hashimoto's typically involves a slow but steady destruction of the gland that eventually results in the thyroid's inability to produce sufficient thyroid hormone, the condition known as hypothyroidism.



Over many years, there can be periods where the thyroid sputters back to life, even causing temporary hyperthyroidism, then a return to hypothyroidism. This cycling back and forth between hypothyroidism and hyperthyroidism is characteristic of Hashimoto's disease. Symptoms can alternate between anxiety, insomnia, diarrhea and weight loss and depression, fatigue, constipation, and weight gain.

[1Jammer]

Thank you so much for your sympathies about my parents.  I kinda feel Mom led me to this sight somehow.  I'll tell honey-hubbie to take that trip this fall -- AND visit Pancake Phils!  I'm a writer, which makes me a hopeless romantic, and if you can't really live the 'fantasy life of the movies', you can always make your own fantasies!  And fall is a great time of year to take a drive to such a terrific place!  I will definitely get 'Overcoming Thyroid Disorders' -- thanks for the suggestion -- and especially your prayers.

It's frightening how little the doctors of today do know -- or want to know might be a better way to put  it.  Your poor little sweetie of a daughter should never have been subjected to such a blatant, know-nothing, bubble-gum-license vended, so-called doctor's anal remarks.  It's doctors like that who should be barred from the medical profession.  "Normal range" my Aunt Fannie!!  Just once, I would like to have the ability to magically turn the tables and see them walk just two steps let alone a mile, in the shoes of someone suffering from a disease most of them know nothing about; nor do they care enough to learn about it.  God help us all.    

  

[1Jammer]

Dani, I've never had the 'antibodies' test done, although I've had the infamous 'TSH' and T3 & T4 tests, which so many of us now know aren't worth sh** and "ALWAYS COME UP NORMAL".  I have no idea what the antibody test(s) are, as the doctors have NEVER mentioned such a thing.  Imagine that.

[magpieannie]

The big kicker for me was when a "fat little bald pediatric cardiologist said, right in front of my 8 year old little girl, who had just struggled with wearing a Holter monitor for 20 days, that "he had no idea how not having a thyroid gland could effect the heart" (83 pvc's revealed in 20 days) . Then he told my hypothyroid child, who had the metabolism of a slug,( thanks to her "Synthroid only, TSH loving doctor") that she needed to lose 30 pounds!  It was every thing I could do to control myself!!!  We will never go back. Then, her pediatric endo. said "it has nothing to do with her thyroid levels as she was in "normal range" We will never go back to this doctor either!!! We have a new doctor now,one that understands the relationship between feeling well and balancing the t3/t4. She understands about the broad ranges and about the optimal dose for each individual! She also understands how being treat inadequately can effect the heart(my daughter is no longer having pvc's) and many other areas in the body! These doctors do exsist Jammer! Keep looking until you find him or her. Ours is just a family practice MD recommended by our t3 compounding pharmacist, as someone who really understands thyroid issues. Try asking your local compounding pharmacist for a recommendation.

[magpieannie]

No, I've never been to Punxi in February. I love that movie too! Reading  all these post by people having some of the same problems with doctors, meds. and lab results,  over and over again, sure makes me feel like that movie though. It really is unreal what everyone must go through to find the answers to thyroid issues.It can cause trouble with soooo many things in the body. Don't give up on this! Order the book,  Overcoming Thyroid Disorders by Dr. David Brownstein on Amazon. com (2008 edition). It is such an eye opener to problems of not being diagnosed, and blamming issues on everything else. This happened to his Dad!  It's an easy read and he is right on!!! So sorry about your parents.Take a trip to Punxi soon! It's a lovely drive in the fall. My husbands uncle owns the Pancake House (Punxi Phills) right as you get into town!  I'll be praying for you!

[dani2776]

Well I just cried reading your posts.  I am so sick and tired of doctors not listening.  We know our bodies and we know when something is wrong.  One of my BIGEST symptoms I always bring up is that I DON'T FEEL RIGHT!!!!  I can't tell you how many doctors I have seen and how many tests I have had done just to always be told to lose weight and take these anti-depressants.  Ummmm......if I knew how to lose the weight I would gladly do it and like you said I am not sick because I am depressed, I am depressed because I am sick, BIG difference!!!  I'm sorry to say I really don't know your story but have they ran the antibodies tests on you?    

[1Jammer]

You have a point about taking valuable information with me.  There's no time to talk let alone find a solution the way we're hustled in and out of the offices with (if we're lucky) 15 minutes to present our problems or concerns.  

This doc SEEMS to be caring, but when I did mention the possibility of him putting me on medication and monitoring me for a time, he didn't say no; but he did say it could cause problems with my heart (racing, etc.), and possible other problems.  He merely mentioned the Vit. B shots, which could help admittedly, and I did agree; but I'm going in for the kill with this next appointment and insist that he try, or I am prepared to tell him "thanks, but I'll find someone who will actually listen to what I'm saying."

It was when he said he couldn't understand why I was put on thyroid medication and taken off it again so many times that I nearly fell off the chair.  DO THEY NOT LISTEN TO ANYTHING WE TELL THEM??  There is a reason WHY -- but apparently he was not willing to try to figure it out.  That is why I was so hesitant about going back to him, but I figured it was worth one last try before I seek help elsewhere -- or gain enough weight to be the fat lady in the circus.  Jesus, do we literally have to stand on our heads to get answers???  

I've had a thing against doctors since my mom died (she had lung cancer) because they told us, "We have one more shot at radiation, but we're going to wait until she really needs it."  Well guess what?  That time never came.  

My dad died six months later.  Although my brothers insist he had cancer too, he was never really diagnosed because he refused to let them do a biopsy.  He told them he lost his wife because of them poking and prodding her and taking their damn good old time in "trying to save her", and they weren't going to do it to him.  I believe he died of a broken heart.

[1Jammer]

Hey, the Cowboys are a good group, too!  :)

In regard to your message, thanks for saying it's not all in my head.  After 25 + years, I should hope not, but da**, how do you get docs to listen??  I'm trying as hard as I know how, but unless you tackle them and tie them down, they don't listen, and don't seem to care enough.  I did begin to think maybe it was all in my mind, but my body and brain won't let me believe it.  It's just that I have gone through so many docs that I do find myself wondering about my own validity.  I know I can't do anything about the past now, but to think I could have been helped a long time ago only stokes the fire inside that tells me I would have been a different person, and not the bit** I feel I've become sometimes.  But...I figure a few good years (hopefully), is better than none.  Bubble gum machines dole out too many doc's licenses, I fear.  But thanks for the good thoughts!

I absolutely love the movie "Groundhog Day"!  I've never been, but I would love to go during their celebration -- have you ever been there for that?    

  

[magpieannie]

Well how'bout them Cowboys?  I live near Dallas!  I really think you should persue this. It is not in your head. Do not take no for an answer! You need adequate treatment. Post for a recommended dostor in your area. Someone on here will know who to send you to. Pittsburgh is a big area. There is a doctor there somewhere that will listen, I promise. By the way, I have family in Punxie. I love it there!