So discouraged. Can't stop crying. Very hypo & hyper too

This is long - didn't know how to make it any shorter.

Was given a new script for 112 mcg generic levothyroxine due to numbers below and increased sleepiness and cold feelings in the last several weeks. Also i am crying and sleeping 6-8 hours during the day again.
I'm exhausted and the battle has just begun - I do realize this. Seems like forever since disagnosis in Nov 2010.
But i must have been sick for quite awhile  with a TSH of 48 -- and battling permanent effects of pernicious anemia undiagnosed for ?? years.

Sob Sob... I was feeling a little better and then crashed back into massive sleeping and being chilly suddenly. My TSH changed quite a bit in 2 months. T4 stayed about the same. and now i have all the new tests to figure in.

NUMBERS POSTED HERE FOR REFERENCE: hope they are readable
All tests taken 2/15/11 for the FIRST time: (originally diagnosed November 2010)

Anti Thyroglobulin Antibody:
     Anti Thyrogl. Ab      158 High   (normals: 0-115 IU/mL)
     Anti TPO Ab            12            (normals: 0-34   "       )

Thyroid Stimulating Immunoglobulin:
                                  1.5 High   (norm: less than or equal to 1.3) TSI Index

I would appreciate any input on above autoimmune tests. I believe the endo was saying i have positive antibodies for hashi and graves - and that I may be on a hyper/hypo rollercoaster. YIKES> although I am definitely Hypo. Primary.

Also new was test for Vitamin D. She had instructed me to take 5,000 units of D3. and the results were good:
     Total Vitamin D  25 Hyroxy:       43    (norm:  25-80 ng/mL)  I had been deficient.

Here are some more results:
including previous tests:

(taking generic levothyroxine 100mcg during all this time)

TSH   3.570   Feb 15;        
         0.675   Dec 13
         47.590  Nov 2  initially
range (0.270-4.200)


FreeT4 1.390  Feb 15;    
           1.440  Dec 13
(range 0.9000-1.700 ng/dL) (only tested twice)

Free T3  2.91  (first test) Feb 15
(range 2.0-4.4 pg/mL)


I feel like i am starting all over. I just sobbed all day - on and off - today. I insulted people and irritated them. There are only a few people in my life so I can't afford to upset them. I'm tired and tired of being tired. I have been 'unwell' for 8 years - that is when i could no longer work though i had no idea why at the time.

Lastly, endo did say something about my extreme numbers making me a good case for killing off my thyroid (my words:) she said something about radioactive isotopes or something).... She said she doesn't need to see me for 4 months. I'll never make it like this.

Maybe I should post this in a forum i saw called 'thyroiditis *****' or something like that... I'm not looking for pity; just understanding. I'm only hearing from my family -none of whom has ever had any of this- "Well it could be a lot worse!"

Jeepers, like I don't know that. However it does deserve acknowledgment. What we all go through here. I'm so lonely...

Any comments or thoughts or suggestions or even some way I can help you...  will be welcomed and greatly appreciated.
Nancy

[redheadaussie]

Ok, how come you took over my role in being a sad sack? You do realise I charge a commission on this stolen identity!  I demand my money!!!

Hee hee,...seriously though. I hear you loud and clear! Man, how many days have I sat here and just gone, BLEURHGH boo hooo hooooo no one gets me and I am miserable. Hmmmm,  way too many I think.  It really does suck being a thyroid patient...having undiagnosed illness makes it feel like we are just not seen as being sick in the first place. Then we have the rude awakening of, Hey what if I WAS treated earlier, would I be different and better now?  Bah! WHo knows!

  Now my advice?Just take each moment as it comes. I can tell you I have enough trouble staying awake long enough most days to post any comments here. So, what do I do about it? I get up take my tablet, and use that hour of waiting till eating to catch up on the forum. I feel my best and freshest (bwaaaa haaaa haa...yeah really like an old dish rag but better than a bag of poopp later in the day!) I write a list of what I would like to do....note; I didn't say what to do and cross off those that my energy levels allow. Some days it is gardening other days it is just loading the dishwasher. But a sense of achievement rather than feeling inadequate is how I look at what I do when I can.  If I don't go for a walk when I promised I said I would, well, no point beating myself up about it. Body say no go, brain gotta hear it!

  I think your endo was referring to doing an uptake scan. That involves using radioactive iodine to highlight or not the thyroid. The thyroid cells are the only organ in the body that take in iodine and being radioactive will show that.  4 months does seem a little extreme to wait to do that. Are you able to have a chat with your primary care physician and ask if they can see if they can talk to the endo to make it sooner....Get the tears going, bawl your eyes out and threaten you will jump off a small cliff coz you can't go on.....believe me, I've done that..(the tears not the jumping off cliffs...though it can be tempting) Doctors don't like having distressed patients...makes them all uncomfortable and icky feeling, so they usually do anything to make you get out of there fast, including doing testing etc.

   Now Nancy my dear.....you think you got problems? You wanna swap your day for mine? I got me a siamese cat that for 6 nights this week has peed on my bed and I have had to drag my wet butt out of the bed and remake the whole bloody thing, whilst falling asleep where I stand....now if that ain't motivation to make you feel better I don't know what is!

BTW the cat's name is Oscar if anyone is interested in swapping a cat for a house trained man.

[Nat_16]

Sorry to hear you're so discouraged!!!  I feel your pain, I know exactly how you feel.

I know the feeling of having all these symptoms and really not feeling good and having the doctor think it's "no big deal" and "see you in 4 months"...ergh!

I won't comment on your labs much because I'm relatively new to all this myself and haven't exactly mastered the fine art of "thyroid blood result reading".

Good luck and don't feel lonely.  We understand how you feel!

[SassySharon]

Nancy, I am sorry that you are having such a terrible time.. I know exactly where you are coming from!! I am not well versed enough on labs to make a comment.  I do think that 4 months is an awful long time.    No, you are on the right forum...Believe me you will be receiving some help from many people here.  They are great.  barb,gimel,lazymoose,,goolarra,redheadaussie,stella, chitchatnine,ftb ...and many others....some of these wise heads (thats a compliment guys) will be responding to you, but you started your thread late tonight, so they may be in bed.  
I just wanted to welcome you here and let you know that they will be responding soon, so hang in there.  You are not alone!! I wish I could give you some guidance tonight.  All I can say is that I do want to acknowledge that you are going thru a lot and it sounds like your doctor could use a lesson in communication.  Seems like she could have better explained some things... you can always call and get a "consult only" with them.  they usually schedule a little more time for a consult.  And don't forget, if you are not satisfied , you always have the option of a second opinion.  Wishing you well.  And I love the pic you put on here....at least i know you have a good sense of humor!!!!   -sass-

[nanafox]

Thank you. Thank you. i don't feel quite so sad now. It can be so hard to reach out - but what are our options: sitting alone and afraid. You are both kind hearted and it is appreciated. Nancy

[SassySharon]

Well, We Love You Nancy!!!!!!     :-)     And you are welcome!!!  

[redheadaussie]

Ok, how come you took over my role in being a sad sack? You do realise I charge a commission on this stolen identity!  I demand my money!!!

Hee hee,...seriously though. I hear you loud and clear! Man, how many days have I sat here and just gone, BLEURHGH boo hooo hooooo no one gets me and I am miserable. Hmmmm,  way too many I think.  It really does suck being a thyroid patient...having undiagnosed illness makes it feel like we are just not seen as being sick in the first place. Then we have the rude awakening of, Hey what if I WAS treated earlier, would I be different and better now?  Bah! WHo knows!

  Now my advice?Just take each moment as it comes. I can tell you I have enough trouble staying awake long enough most days to post any comments here. So, what do I do about it? I get up take my tablet, and use that hour of waiting till eating to catch up on the forum. I feel my best and freshest (bwaaaa haaaa haa...yeah really like an old dish rag but better than a bag of poopp later in the day!) I write a list of what I would like to do....note; I didn't say what to do and cross off those that my energy levels allow. Some days it is gardening other days it is just loading the dishwasher. But a sense of achievement rather than feeling inadequate is how I look at what I do when I can.  If I don't go for a walk when I promised I said I would, well, no point beating myself up about it. Body say no go, brain gotta hear it!

  I think your endo was referring to doing an uptake scan. That involves using radioactive iodine to highlight or not the thyroid. The thyroid cells are the only organ in the body that take in iodine and being radioactive will show that.  4 months does seem a little extreme to wait to do that. Are you able to have a chat with your primary care physician and ask if they can see if they can talk to the endo to make it sooner....Get the tears going, bawl your eyes out and threaten you will jump off a small cliff coz you can't go on.....believe me, I've done that..(the tears not the jumping off cliffs...though it can be tempting) Doctors don't like having distressed patients...makes them all uncomfortable and icky feeling, so they usually do anything to make you get out of there fast, including doing testing etc.

   Now Nancy my dear.....you think you got problems? You wanna swap your day for mine? I got me a siamese cat that for 6 nights this week has peed on my bed and I have had to drag my wet butt out of the bed and remake the whole bloody thing, whilst falling asleep where I stand....now if that ain't motivation to make you feel better I don't know what is!

BTW the cat's name is Oscar if anyone is interested in swapping a cat for a house trained man.

[nanafox]

Red - check out my page. I have an Oscar too! Just posted some photos to force myself back into the world. You are the greatest funniest wackiest lady in the world. And I think of you and your posting and photos and honesty so much. You are like a heroine to me, I swear, and damnit i don't usually swear, by god. lol. Thank you for sharing... i had left a note on your page some weeks ago and just threw in the towel (temporarily)... enough pity partying. I would never want to steal your wind because you are awesome girl! I love your spunk. befriend me please! I lost my whole list of friends... all 4 of you! I am smiling at your pretty face! Nan (really check out my few photos i just now put in and meet my Oscar...)

[Nat_16]

Good to hear you're not feeling quite as sad.  I often say thyroid disease is definately a test in patience, persistance and stubborn-ness.  

Patience because it can take a while to figure it out...persistance to keep with it...and stubborn-ness to be too stubborn as to stand up to the doctors and refuse to give in!  I've got good hold of the stubborn-ness aspect; still working on the other two!  Haha...we'll get there!

[nanafox]

Gosh Nat
I almost found myself thinking, "what was i so upset about yesterday'. Oh boy! Well I did have a good reason to grab my computer this morning (thank you Red) and Nat I love your trio patience, persistence and stubbornness. I will think about that today and figure our a way to remember those words and use them to help myself and hopefully others in some way. You are very wise. Thank you! Nancy

[SassySharon]

Hope this morning finds you all dry eyed and bushy tailed, well not serious about the bushy tail part....just sayin....lol ..I did try to send you a note and a message and see that you have it as not accepting notes or messages at this time, soooooo  just wanted to say top of the morning to ya!
Glad you are feeling better.  Now say a prayer for me that I do not sweat,sweat,sweat all day long....seriously tired of that!!! Feel like a i need a boat.  Wish I knew the answer for that sudden flood!!  okayyyyy..gonna start moving along this fine morning her in Texas!!!!     -sass-

[gimel]

The main thing I see in your test results that I would want to change would be your FT3.  At 2.91, it is well below the midpoint of the range and many of our members report that symptom relief for them required that FT3 was adjusted into the upper third of its range.  For you, that would be a target of 3.6, or at whatever level symptoms are relieved.  Symptom relief should be all important, not test results.  

Since your FT4 is already slightly over the midpoint, that is fine, but with that, your FT3 level indicates that you are not converting T4 to T3 very well.  This can sometimes be associated with having low iron/ferritin, and/or low selenium.  At any rate I think you would be amazed at the effect of adding a T3 source to your meds, as a substitute for some portion of your current T4 med.  

A good thyroid doctor will test and adjust FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels,  As I said previously, symptom relief should be all important, not test results.   Here is a good link about that approach.  It is a letter written by a good thyroid doctor for patients who are consulting with him from a distance.  the letter is sent to the PCP of the patient to help guide treatment.

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

If you can get your doctor on board with clinical treatment, and get a prescription for a combo T4/T3 med like Armour, or Nature-Throid, then you would be amazed at how quickly it can have a positive impact on how you feel.  This is because the half life of T3 is  much shorter than T4, and affects the body much quicker.  

[nanafox]

gimel,

Thank you for very very sound information and counsel.
I have been to three doctors already and all three use the TSH as the almighty number. My latest MD, the Endo (who was going to be my 'answer' and my angel), actually said to me that the ONLY test that matters is TSH.

She also said T3 is a useless measurement. So in that regard, I am lost. Have no idea where to go from here. Where to look. Have to stay within my insurance guidelines as I do not work.

AND my pharmacist -who are often very knowledgable- told me that NO ONE in this huge chain drug store takes T3 - that it is a false feeling of health because it is quick acting only... and really does not help the problem. Isn't that just insane?

I am frustrated with uninformed doctors and that is as kindly as I can put it. This is my second round with an autoimmune disease that nearly put me under - literally because of -yes, I will say it - negligence.

I am just blowing off steam now. I am happy for those of you, so very happy, who have been blessed with doctors who listen to you.

[gimel]

Have a look at this listing of top thyroid doctors in Pennsylvania.  If you will identify which ones are close enough to you and sound like good prospects (rather than suspects), and send me a PM with their names, and your insurance carrier, I'll be glad to make phone calls and try and confirm if they are the type of doctor you need.  I do this by calling and asking to speak with one of the nurses before making an appointment.  Then I ask the nurse if the doctor is willing to trat  patient clinically, by testing and adjusting free T3 and free T4 levels as necessary to relieve symptoms, without being constrained by resultant TSH levels.  If the answer is yes, then I ask if the doctor is willing to prescribe meds other than T4 types.  If either answer is no, then I keep on looking.

[gimel]

Forgot the link.

http://www.thyroid-info.com/topdrs/pennsylvania.htm

[nanafox]

sent message.

[nanafox]

Thank you so much. I am feeling much more positive. Perhaps I needed a good purging or a shove to get me back here again.

At any rate, you were all very kind and generous. My heartfelt thanks. The battle continues...

[gimel]

I haven't received your PM.  Please try again.

[HessyKat]

Just wanted to drop in a line with all the others that we are here for you and I will be praying you get the proper treatement and start feeling better. I am so sorry for how you are feeling.I also battle with mine everyday too. HUGS to you and feel better.

[worriedmom4950]

My daughter is 24 she was diagnosed with hasimoto a couple of years ago.
She has knots under the skin, sponge kidneys,loss of hair, weight gain, constipation, sever backache well acutually we joke the only part of her body that is ok is her sinus's. She has been to "specialist" they give her the same kind of med then they fax it all to her family doctor and he takes it from there. He does routine blood work every three months. What amazes me is he says the blood work is great everything shows to be right and to just keep taking her meds. what I dont understand is if the meds are working so well why does she constant have as her doc puts it flair ups all the time. Right now she has sores in her mouth and throat. sever back pain. and she was told to take a muscle relaxer and rest. So it seems to me the meds are not right or there wouldnt be constant problems.
I would appreciate any help we can get or information.
precious_k_s***@****
Thank you for reading
Donna

[danie17075rm]

Nancy,


I can sympathize with you as well.  I've had the extreme hypo and hyper numbers for almost the last year.  MY life has been a living nightmare.  I have had my share of tears and anxiety.  I am meeting with a surgeon on May 10 to get rid of the thyroid as I have no other choice.  I REALLY hope you find answers and start to feel better.  God bless.  You are in the right place as far as support goes =).

[FTB4]

Welcome to the forum, I don't have to add advice, as you have had some of the best so far,
Thyroid is a lousy place to be, but we are all here together, for support or any info we can pass on to you. Best Regards FTB4