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HYPO!!!!!!!/ Use for other posts

Received latest TSH results today, still going up, 5.87 from 5.54 a month ago : (  (remember they said no worries, your with in normal range and a new test is not needed, chill out)

Any advice on what to ask the new specialist on Nov 12th other than asking the medical profession to kiss my ass because I'm sick and tired of being treated like cattle and the incompetence from them. I'm a human being!

From what I've heard from some of you that have been there new thyroid meds are not a big deal BUT having to deal with another doc until they get the dose figured out just makes me crazy. I have no one to direct me to a good doc so I had to just pick one plus I will be starting out with a new $1,000 deductable so it will be on my dime.

Long day and I'm just tired waaaa waaaa

thanks for the ear, tomorrow is a new day

dh


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913053 tn?1245952849
I've been struggling with several hypothyroid symptoms over the past year. I had my TSH evaluated in Nov of '07 and it was at a 2.7, now my symptoms have gotten much more pronounced and aggravating (the worst of which to me would be the SLOW reflexes—more like non-existant). Another round of blood work showed TSH at 4.89 and FT4 at 1.3 which my doctor said is subclinical and to come back in 3mo. to be retested. I do have a swollen submandibular gland on my right side that has been that way for years with no resolution.

My main question is, is that normal for a thyroid to decline like that, and if I am subclinical, does that always turn into clinical hypo? My original blood test was at another clinic and they didn't evaluate FT4 levels. So there's nothing to go on there. I'm at the point where I cannot really deal with my symptoms (especially my thinning hair), but my doctor won't treat unless TSH hits the 10 range. So am I just stuck in "limbo" and have to wait to get worse before I can be fixed?! This is so frustrating.

I'm WAY too fatigued way too much—it's affecting my life. They also said my potassium is quite low as well. Does this have anything to do with the other? I just want some answers and relief. This also bothers me since my grandmother had thyroid cancer...Which might be an over reaction but still, gets me nervous.

Thanks for listening!
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Avatar universal
You were not harsh at all but very helpful as usual. This whole thyroid thing took me by suprise. My hep doc never said a word about rising TSH levels, that is when he could read from the right chart. He is an idiot and I stopped seeing him in May a month before tx ended and only that time because I had to get my monthly refill for the peg/copeg. He refused to do 90 day refill.

I had an appointment for a new one until a female coworker whom I trust and respect told me she had been molested in his office by him a few years ago. So I'm docless for now and relying on this forum more than ever.

I don't remember your stats but I think you are doing 48 weeks?
I'm about 4 months post tx and I have felt really great this week end. Thanks for thinking of me.

dh


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Avatar universal
Bill, I guess we're so used to toughing it out around here & not talking about everything little thing, that we tend as a group not to dwell on how hard it is to ingest, and then detoxify, these powerful drugs.   I found Derail's comment very telling, that he would rather undergo chemotherapy sessions than endure another round of HCV treatment.   I wonder if I sounded too harsh in my first message...but all I really wanted to say was that things likely won't get worse from this point & if anything, soon will get better.   I'm so very glad to hear of your gradual improvement from day to day.   Health WILL be yours again, believe it, bro'.
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Avatar universal
Thanks so much for your input, that in it self has reduced my anxiety and helped confirm I should wait. Every week I feel better post tx and I appriciate life so much more. Thanks man!
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Avatar universal
Thank you very much.  I have to agree with you, it has been rough, but I am feeling better today, not 100%, but much, much better.  I must confess my vision of throwing out the meds must have went to my head because I realized this morning I forgot my shot last night. Yup, it's warming now.  
Thnx for listening.  
docsgold
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Avatar universal
Are you feeling really bad with thyroid symptoms? I felt terrible at 4.6 while others are ok. You don't exactly have to use a endocrinologist. I go to an interal medicine doc  and he is quit knowledgeable about thryoid issues. I looked him up on the internet and saw he specialized in cronic disease. Try calling a few docs and explain your problem before going in. I spoke with their nurses who inturn spoke witht the doc and got back to me then I picked the one that seems the most flexible and knowledgeable. If you are feeling symptoms and they will not help you find another doc. Thyroid issues are pretty commom so you should be able to find a regular doc who can handle it. LL
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Avatar universal
It is really hard to tell what symptoms are what post tx or thyroid??? I have been watching my self closely and don't think I really have symptoms of hypothyroidism. I thought I was constipated but it appears my bowels are just getting back to normal and the weight gain has stablized and seems it was inactivity and muscle coming back. My cold hands and feet are better in the last week. Maybe I just panicked. I am getting better every week.

My current PCP will not treat me (they like to share their wealth) Although I'm scheduled to see specialist on the 12th I'm thinking of waiting for my 6 month post in December and see where my TSH is at that time. Some of the stuff I have been reading shows some hope that the TSH could still come down and maybe I can find a better doc by then???

All your opinions (not medical advise :)) are very much valued. Thanks so very much.
TSH 1/04-3.58  4/4-3.89  7/04-4.17  9/045.54  10/04-5.87

dh
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Avatar universal
dh bill: i didn't realize you had finished tx cos your initial post didn't mention it.  if i were in your position i would consider waiting till december (as long as it's not late december) without T4 supplements to check TSH again.   your TSH is only slightly elevated and you although you removed the intense interferon pressure back in june (i presume), that drug hung around in your system for a while and even after it dissipated, your thyroid needs time to try to resume its natural level of t4 production -- a gradual process.   introducing a t4 supplement at this will help you short-term, but the thyroid will become accustomed to this helping hand and in return, it will slow its own t4 output.   if it's already on the road to normalization (even though your numbers seem to indicate that things are drifting slightly in the opposite direction for the time being), you might not want to interfere with nature's path.   once you begin a t4 drug, it's difficult to reduce or discontinue it later without careful tapering -- you're training the thyroid to do less on its own and it will get a little "lazy" as a result.

califia and i were severly hypothyroid and immediate intervention was a must -- we may have practically "blown out" our thyroids so that they will produce only negligible amounts of t4 for life.

symptoms of hypothyroid can be similar to side-effects from interferon/riba: some are fatigue, depression, dry skin, coarse, thinning hair, sensitivity to cold, constipation, general malaise, and some others which aren't coming to mind.    if you're feeling better, that's a good sign.

cuteus: glad the liquid bandage is working  -- the bandaid site might pinpoint some of the differences in the gel and regular formulations:

BAND-AID
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Avatar universal
Hey DH,
I ended up using my PCP for my thyroid. I went hypo in my 13 or 14th week. Anyway. It's not that bad. The Sythroid now is generic and cheaper. My TSH was right where yours is now. I'm normal again taking .005 something daily. It's a little pill and white color no reminders of the Riba. I have to take Prilocec daily also and it looks alot like Riba. Hang in there.
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Avatar universal
the other day when i discovered i had the condition i found this site:

Hypothyroidism: symptoms, dangers, and treatments:

http://www.endocrineweb.com/hypo1.html

it was the first result in google -- i looked at a couple more but this one had decent info -- check it out

stan

p.s. -- my "link" might not be "hot" -- just copy/paste or type it manually
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Avatar universal
I am surprised the hep dr wants to deal with that complication himself, mine does not get involved in anything but the blood counts and manybe ads, everything else is to the speciallist or PCP. By all means go to your internist, he should be the one monitoring this, remember the other dr is a GI specialist not much endocrinology training. don't wait.
best to you
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Avatar universal
Seems to be lots of discussion about thyroid which is my latest problem.  I started tx in June and my thyroid stayed in normal range.  My doc tests monthly for liver enzymes, TSH, uric acid, and complete CBC.  Suddenly on 9/16 the TSH dropped to 0.15 (hyper), 9/29 rose to 0.79 (back to norm, barely), and then 10/19 was 41.82 (hypo).  I had symptoms of fatigue, extreme shortness of breath with exertion, pain in my chest and throat with deep inspiration, throbbing pain in my throat when laying down, pounding heart rate.  I went very quickly from hyper to hypo, not to mention I acquired a viral infection on top of it all, so he was worried about pneumonia and pleurisy.  It has not been pleasant--AT ALL!!

He offered me a drug holiday and I have to tell you I thought very seriously about it, but declined.  I am not sure I would restart the tx again if I got off now, but would really regret it in the end since I cleared at 12 weeks.  I had wonderful visions of throwing riba all over the yard like confetti and shooting the interferon down the toilet.  LOL.  But that would not bring my thyroid back, so I am marching onward until April 15.

I am now on 50 mcg of synthroid, and permission to take advil for 3 days (fantastic pain reliever) and have an RX for antibiotics.  I am feeling somewhat better.  Will test thyroid function again in 2 weeks to make sure the dose is correct.  He says 50 mcgs is the lowest dose, but someone here is on 25 mcgs with a much higher TSH.  I hope you get to feeling better.  

I also did remember some talking about weaning off the synthroid meds after tx and was wondering when they went hypo during tx and any other specifics they could share.

Thanks for listening and I hope everyone has a pleasant weekend.
docsgold
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Avatar universal
Thanks so much for your response it makes total sense to me but what did you mean not to wait till late December???? I will be 6 months post tx on December 16th.
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Avatar universal
dec 16th is about 8 weeks from now so in my opinion that would be fine -- the comment about not waiting till late december was simply related to the fact that about 10 weeks would lapse in between tests in that scenario.   medically that might be fine, because your shifts have been subtle and modest so far, but you seemed concerned about the way that the readings were trending gradually toward a slightly more hypo stance. i thought with all of the holiday cheer going on around at that time, you might have some anxiety in waiting such a long period to check again and not enjoy yourself fully during that time....that's all.   if you can group it with your normal blood tests and get everything done mid-december, that sounds ideal to me -- it's what i'd do if i were in your shoes.     take care,

stan
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Avatar universal
You're way overdue for some smooth sailing.   What  a roller coaster ride youv'e been on.   Hope you recover soon and keep straight on to SVR!
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Avatar universal
What are the symptoms of thyroid problems?   Can anyone determine and explain the symptoms or effects of hypothyroidism and sort this out specifically with everything else going on with tx side effects as well as hepC?
~dtr.
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Avatar universal
http://thyroid.about.com/

With advanced hypothyroidism, the face can take on a "mongoloid" cast with inflated cheeks and noticeably drooping, swollen eyelids.  (Been there--most unattractive!)    Tongue becomes heavy and words slurry; the voice is hoarse and gravelly. (I noticed my voice going low and hoarse with the most recent drift into hypo.  Was even noticeable to my nurse over the phone.)   Breathing problems, heaviness in the chest -- here it resembles a symptom of anemia.   Tinnitus.  Muscle weakness.  Weight gain.  Other standard symptoms already mentioned above.   If sudden onset of depression w/ no other external triggers, definitely check your thyroid.

Hyperthyroid:  increase in body temp and pulse, racing heart, loss of appetite.
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Avatar universal
No!  Horrors!  Absolutely not!    And why can't these geniuses test you again in 4 weeks?   I'm with you:  stick w/ your primary.
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Avatar universal
did you ever develop a visibly enlarged goiter?  supposedly once they "grow," the size never goes down, you can only stop them from getting bigger if treated properly with the drugs (unless you have tricky surgery).   this is worrying me a bit after i was just started on a miniscule 25 mcg/day synthroid with a 188 TSH....and the hep people refuse to check my TSH again for another 7 weeks....no synthroid dosage adjustment during this period either -- i realize it takes a few weeks to see how the thyroid is responding to the meds, but in the meantime my neck might puff up hugely and never reverse....i'm considering getting my PCP to treat me for this instead of the hep folks.....i don't think they know as much about it as he does -- take care,

stan
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Avatar universal
I can relate to your ambivalence about having to start all over with a new doc, but here's the good new--that upward TSH creep is really small  & essentially unchanged from the last reading, so that should be reassuring.   Hope you're not feeling completely wiped out, though.   And hypothyroid can definitely cause depression, so this might be contributing to your apprehensiveness about the whole situation.

The only real disadvantage to being on thyroid replacement hormone is less efficient calcium uptake, which affects bone quality.  (This is certainly an important issue for women, but I'm less sure about  the role calcium plays in men's health.   Ask your doctor?)   Here's a little horror story to help you feel better  (!)...way back in the tx dark ages ('91) they turned me loose with what turned out to be no thyroid function and no one caught it for about 6 months.   Can you imagine?  When someone did bother to test my thyroid the TSH was in the several hundreds.  That experience is the source of any post-Traumatic Stress Disorder I might still be carrying around with me:  get thee behind me, medical negligence!  Anyway,  help is on its way for you.  Just hang in there.   After all, you're a grizzled treatment veteran and can handle ANYTHING.
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