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is there any hope of being normal again??


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Old 07-14-2009, 02:24 AM   #1
jashca
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is there any hope of being normal again??

I have been feeling terrible, and have experienced the common six week crash after starting medication - thyroxin (eltroxin) to be exact.
in addition to the many symptoms i have severe carpal tunnel syndrome and added symptoms of hots spots on my feet and inner thigh, depression and excessive weight gain, which i now know is water retention.

My lovely doctor (second after my discovery), the only one who would listen, increased my medication this past weekend.

Will these symptoms go away? Will my cts stop? How soon can i expect to feel normal again?

I have had cts for over a year, gained 25kgs (55pounds) in six months, was diagnosed with clinical hypothyroidism in March, but my T3, T4 and TSH were all "within the normal range". The only thing that was hopeful was my doctor saying "normal for some may not be normal for you".

I'm going crazy, and after reading a lot of posts, i get the feeling that I'm doomed to be stuck in this rut forever and no amount of medication will help!
I feel like I'm drowning.

Help.

 
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Old 07-14-2009, 09:29 AM   #2
javelina
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Re: is there any hope of being normal again??

Hang in there. The chances are very good you are just undermedicated for your hypothyroidism. This is a very common mistake doctors make when treating by lab numbers (that many don't even know how to interpret correctly) instead of symptoms.

Do you have your latest labs and can you post them here? You need to be at the very top of range for Free T3 and top 1/3 of range for Free T4. It's interesting that this is the second person from Africa posting here today... do they even do Free T labs where you live?

Most of the people here are in the same boat as you, hence why they are posting on a forum, but the vast majority with proper treatment do get well.

 
Old 07-14-2009, 02:39 PM   #3
daisy01
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Re: is there any hope of being normal again??

there is light at the end of the tunnel, so just hold on and be a patient patient for a while longer.
When I first started coming here I felt just like you do now, but believe me it does get better. I could barely string 2 words together in a sentence, felt so exhausted and ached so much I used to cry. The guys here were so understanding and gave me the info I needed to get well. Now I run a home for adults with learning disabilities, and doing stuff I would never of believed possible 2 yrs ago. I also have a tidy house and garden and I finally feel back on track.
take care of yourself, eat well and rest when your body tells you to. Its healing now as well as functionng at a normal pace and needs some TLC.

 
Old 07-15-2009, 01:42 AM   #4
jashca
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Re: is there any hope of being normal again??

mcaimless
mcaimless
thank you so much for your encouragement. to answer your question, in zimbabwe there are no free T labs. my test cost US75, and that's why we have to wait to test in a few months. the only results i have are from the only test i've done. my doctor said she will re-test in three months time - which will be six months after i raised the alarm.

FT4 - 0.70 ng/ml; TSH - 3.11uIO/ml; T3 - 3.09 ng/ml
(the normal ranges here are FT4: 0.58-1.64; TSH: 0.49-4.67; and
T3: 2.5-3.9) i thought my T4 and TSH were ranging to the extreme low and high respectively.

what does it mean to have new symptoms developing when old ones seem to be going - like the hair loss and acne?

my doctor has treated many people i know for this condition, one of them said that it takes time to level out, though the body never really goes back to normal, it gets better.

 
Old 07-15-2009, 01:47 AM   #5
jashca
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Re: is there any hope of being normal again??

daisy01
that's one thing i lack - patience.

its also hard to eat and do normal stuff when you feel so ugly (its the only word i can think of that fits). its not my body and i hate it. i have also had to cut down on my tea - which i loved, and carbs, but the weight keeps piling. i have no more clothes to wear and i hate going out in public. i feel like such a slob.

but thank you for your hug and kind words, i will try. yesterday was a really bad day. one i haven't had in about six weeks. today's a lot better.

Last edited by jashca; 07-15-2009 at 01:48 AM.

 
Old 07-15-2009, 09:01 AM   #6
javelina
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Re: is there any hope of being normal again??

Jashca, I was chuckling because you mis-interpreted my post about getting free T labs to mean labs that didn't cost anything. Makes perfect sense when I read it that way too

What I meant was FT3 and FT4 (or Free T3 and Free T4) labs. Your FT4 you posted is very low and should be up in the top 1/3 of range (yours is in the bottom third). This means you're hypo (though it would be good to get an FT3 to back it up-- I assume the T3 you posted is not Free T3). Your TSH is above one of our American endocrinology society's ranges so that's an indicator you are hypo too (though TSH is a lousy test to screen for hypo in my opinion).

Is your new doctor treating you? And you need to be treated until your symptoms resolve, not just when your labs look "more normal" (I think the doctor who told you you'll never feel normal again is one who doesn't treat well enough). Is there any possibility you can use natural thyroid replacement where you are? I think most do better on them for the long run.

Yes patience is the hardest thing when we feel terrible but you can't rush thyroid hormone replacement. It's a slow incremental process. But you should be getting an increase of synthetic meds at least every 6 weeks (every two if using natural thyroid is recommended) so I hope your doc isn't taking too long about this and keeping you suffering needlessly.

 
Old 07-16-2009, 04:19 AM   #7
jashca
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Re: is there any hope of being normal again??

the result doesn't say FT3 so i presume its not free t3. the labs here for bloodwork are 2 in the whole country and are in Harare (capitol city 436kms away). so every time we test it has to travel that distance and back.

there are no natural thyroid replacement here, and the doctors only treat on a trial and error basis, backed by lab results. the increases are only done when your symptoms show up again, and after they have done a test to see how bad it has deteriorated. every six weeks is out of the question. i have been on the meds for two months now.

i was wondering what i could do to get rid of all this water retention. i have started calorie counting and walking, and forcing water down my throat (i hate water), and i cut down on my fav drink - 8 mugs of tea with two sugars ( i had to give up the sugar), but i still feel like a balloon. will the meds help this? when?

also, the fact that my first cousin had his thyroid removed at age 19 (16years ago) - is that a factor in my problem?

Thank you for your help.

Last edited by jashca; 07-16-2009 at 04:21 AM.

 
Old 07-16-2009, 11:56 AM   #8
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Re: is there any hope of being normal again??

Wow, you are really up against it aren't you? I am at a bit of a loss but it sounds like you are not getting enough hormones to keep your symptoms at bay. Since natural thyroid hormones are not an option, do doctors prescribe T3 there to help if you aren't able to convert T4 to T3 well?

It's just very hard to know what is going on without the correct testing available.

Find out if your doc is familier with T3 (called Cytomel here) and how to properly administer it (FinnMaid on this board is on combination T4/T3 and she will hopefully chime in and let you know what works for her).

Is there anyway at all to get your adrenals tested? Can you order saliva tests online? Water retention could be pointing to problems there and you need to check your aldosterone levels as well as sodium potassium levels.

Yes, thyroid disease has a large hereditary componant. Have you had the proper imaging of your thyroid, such as an ultrasound?

I hope this helps, don't lose hope!

 
Old 07-20-2009, 05:45 AM   #9
jashca
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Re: is there any hope of being normal again??

it does seem like its me against the world at the moment. i have a test scheduled for september, i'll speak to my doctor about all those - thank you!

back to the results, if my T3 count is in the middle of the "norm", do i need a combo treatment?

 
Old 07-20-2009, 09:37 AM   #10
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Re: is there any hope of being normal again??

Your Free T3 level should be at the top of range to feel best. If you aren't able to convert the T4 they are giving you well enough to bring your T3 levels up then adding some T3 can help with symptoms for many. Natural thyroid hormones have both T3 and T4 in them, hence why they work so well.

Last edited by javelina; 07-20-2009 at 09:38 AM.

 
Old 07-20-2009, 11:33 PM   #11
jashca
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Re: is there any hope of being normal again??

so you're saying that my results are too low? they read T3: 3.09ng/ml normal range (2.5-3.9ng/ml). are you saying i should be higher than 3.09?

That's so strange, i thought being smack bang in the middle was good enough. I'll have to ask my doctor about all this. As for the water, its become a lot worse since i started drinking water (i had major tummy troubles-worse than before), so i think sticking to my many mugs of tea should suffice from now on.

But i will check those other things. You have been such a great help. Thank you!

 
Old 07-21-2009, 08:09 AM   #12
javelina
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Re: is there any hope of being normal again??

Unless that's a Free T3 (not just "T3" or "Total T3") the levels are not really useful to gauge your actual free (and available, or unbound) triiodothyronine, which is the active thyroid hormone.. Free T3 levels correlate more reliably with your clinical status than total triiodothyronine (T3) levels. Most hyopthyroid patients feel best if the Free T3 level is at the top of the range.

I know this is confusing and doctors seem to be the most confused of all and tend to order the wrong tests.

There's a good article online called Understanding Thyroid Lab Tests, The Free T3 (FT3) Test by Ken Woliner, M.D. that explains this pretty well.

 
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