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Old 09-06-2008, 07:29 AM   #1
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kindspirit HB Userkindspirit HB User
Levels all over the place

So frustrated. Jan. started meds hypo/hashi's, tsh 7.66. I've yet to find a dose that works! Went up to .88 and labs were very low, .03. Dropped to .75, labs .13, then 50/75, voila .77 but felt like crap! Now, new endo and went on a steady 75 mcg and got worse! horrid fatigue! just got levels, 2.87 tsh. I can't figure out why one month at 75mcg got very "hyper" and now a few months later its going up again? He's upped my synthroid to 88 mcg, worried because of the hyper state previously. But, having this fatigue and labs showing I'm going the wrong direction guess I need more meds? This is just so strange fluxing so much? I guess its the nature of the beast? just had hoped after 8 months things would start working by now?
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Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy

 
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Old 09-06-2008, 11:55 AM   #2
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kassikoo HB User
Re: Levels all over the place

Hi Kindspirit its not nice to be feeling all over the place hun so thought i would pop in to say i understand babe i keep fluctuating and i am on 75mcgs of thyroxine at the min i had my bloods done on july 15th and they just sent for me to have them done again i am so tired its untrue i feel i am dragging myself about at the moment and cant wake up in the morning even though i have slept well its a pain love kassi

 
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Old 09-06-2008, 11:57 AM   #3
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sue1234 HB User
Re: Levels all over the place

Just wanted to let you know that before I had my TT, my hashi gland would not let me even tolerated 12.5 mg of Synthroid! Now, I'm "even" on Unithroid 100 and cytomel 2.5. I am still tweaking my meds and not perfect by any means, but definitely more even. It's amazing how Synthroid gave me a "tight" or "gripping" stomach feeling, and Unithroid doesn't at all--that's why I switched. You may have to play with dosages AND with brands. But, once again, my hashi kept me from tolerating any meds before.

 
Old 09-07-2008, 06:20 AM   #4
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alikat709 HB User
Re: Levels all over the place

kindspirit,
I did the same thing on synthroid. I did ok with it for 14 yrs,but after my RAI in 2005, my levels were ok once in may of 2007 . the doc said I was good ,so I didn't need to come back till nov. I told her at the time I still didn't feel good, and my legs were awful, (lots of tightness and muscle spasms) she said it would take time for my body to know the levels were good. LOL what a load of ****>by nov when I did go back my free t4 was way below normal and my tsh was 48.6. I played the game until june 2008,we upped the dose lowered the dose. I also did the 150 /175 rotating dose. It didn't work.
I switched to armour on june 12th , I am still not optimized yet either, (doc not that great, but he's learning) my levels are in range , but not yet where we need them. I have NEVER felt this good on synthroid. ALL muscle pains,joint pain , achillies tendonitis,carpal tunnel, and this incredible right side of my butt pain ,ARE ALL GONE. I still have a little lingering fatigue . I went through 4 endo's since 2005,I was tired of them screwing around with this anymore. I found a D.O that will give me armour. Its the best thing I ever did. I am ALMOST ready to go back to work. The armour also fixes the brain fog. I also had this pitting edema in my right leg that the armour got rid .My temps are running 97.5 - 98.0. this is up from a NORMAL 95.0-96.0 average on synthroid. Its worth giving it a try , if you don't feel better than you can always switch back. (I doubt you would)...
kathy

 
Old 09-07-2008, 07:44 AM   #5
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kindspirit HB Userkindspirit HB User
Re: Levels all over the place

Thanks for the comments. Kass, sorry you're going thru this too. Mornings are the worst!! can't even plan the day, let alone do what I'd like. Sue, maybe it is the Synthroid? I was on generic at first, had horrid throat burning. 2nd endo switched me to synthroid. Ali, so glad the Armour is working better for you!! I'd love to try it, but, as we all know finding a dr to prescribe it is next to nil. I'm hoping with the increase maybe things will get better? Part of me believes its just the "adjustment" period, but the other part says its the meds. I hear so many people do well on synthroid, but a lot that don't. Guess , for now, going to see what this increase does? It just stinks, waiting every 6 wks, then to find back to peg one. It's just such disgrace we suffer when there might be a better way? don't understand why these dr's can't give us some credit, we are the ones going thru it not them! who better to know than the one suffering. If that is the case why have a dr? just have labs and a pharmacy to fill orders. Why they even examine us, waste our time with office visits, they will do what the labs say regardless. I wish I was in a better financial situation, I'd go totally "holistic".
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Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy

 
Old 09-07-2008, 09:21 AM   #6
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sue1234 HB User
Re: Levels all over the place

Kindspirit--
Why not call a pharmacy or two and ask if there is a doctor that prescribes Armour often, and that ought to let you know who works with it alot.

 
Old 09-07-2008, 11:05 AM   #7
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kindspirit HB Userkindspirit HB User
Re: Levels all over the place

Thanks Sue!! not sure if you were the one who mentioned to do that awhile back? I just called CVS, voila!!! got a couple names and a "naturalpath" dr. who specializes in "immune problems" yeah!!!!!! anyway, she probably doesn't take insurance? but its worth the expense if she's good. Heck one inital visit and meds, follow ups, can't be too expensive? Gee, my endo is not doing a thing for all my other issues, so he's only good for a t script. Looks like this lady dr covers it all? Keeping my fingers crossed, will be calling tomorrow!!! Looks like a big Holistic Health center in a major city, the more I read about her feeling better already!!! Thanks again, I'll let you know how it goes,
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Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy

 
Old 09-07-2008, 12:19 PM   #8
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sue1234 HB User
Re: Levels all over the place

Good luck and keep us posted! And definitely ask about cost.

 
Old 09-07-2008, 12:42 PM   #9
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cossette2 HB User
Re: Levels all over the place

kindspirit, in the book "stop the thyroid madness" the author gives you sample letters to give to your doctor re wanting to go on to armour. rather than waste your time with docs who arent going to help you, you might want to get the book and be armed with tons of good info and use the letters to find a doc who will help.
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hypo, Synthroid 75 mcg, estrace 1mg, prometrium 100mg, celexa 20mg, adrenal support (also have primary ovarian failure - extremely rare condition)

 
Old 09-07-2008, 01:49 PM   #10
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kindspirit HB Userkindspirit HB User
Re: Levels all over the place

Sue, looks like they do take ins!! the forms to be printed prior ask for the info. Cossette, she does Armour, CVS gets scripts from her.

Nothing would make me feel better than to be treated "holistic wise", praying this will be the answer?? Plus being a female dr is a plus for the hormonal issues I'm having.
__________________
Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy

Last edited by Administrator; 12-29-2008 at 04:30 PM.

 
Old 09-07-2008, 03:22 PM   #11
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sue1234 HB User
Re: Levels all over the place

Taking insurance is great! I know how many dollars I've spent out-of-pocket over the years, while I had insurance. Maybe things are looking up for you!

 
Old 09-08-2008, 07:25 AM   #12
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Re: Levels all over the place

Well, called the holistic place. The dr. I wanted will not take any new patients, over booked. They have "associates" and will see one next month, she does take insurance. A bit worried with my other issue: high estrogen. My pcp just called early this morning, she's still working on getting me tested for "adrenals", via cat scan or mri. I hadn't heard back from her and thought well, must not be an issue? well, she is "concerned" that since I have no female parts (hysterectomy) and have high estrogen, not good. From what I've read adenal tumors do produce estrogen and that seems to be where my high levels are coming from? The probelm getting the "scan" is insurance related! boy, healthcare rulesour health is at stake because of the darn insurance crap!!!! just another thing to worry about.
__________________
Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy

 
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