Thyroid Disorders Community
why cant my doc and I get my meds right? how long before I get really s...
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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why cant my doc and I get my meds right? how long before I get really sick if not finding the right dose?

I found out in 2004 that I had Graves and it was really taking a toll on me before going to the doctors. I had the whole thyriod removed due to being very hyper.. For the most of the time other than when I was pregnat I have had it under control. However lately I have not been able to keep it regulated. I m now hypo. I have been getting more problems as well. getting very stressed and aggervated, issues with my stomach, pains in my shoulders, tired, and so on. I had a hystorecetomy leaving my eggs and tubes. what can be causing me to be getting worse all of a sudden? I could understand if they had taken my eggs, but they did not and would not. I am taking my meds and seeing the doc every 6 weeks. please someone tell me why I cannot get regulated again. I am so ready to feel my age again.
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649848_tn?1357751184
There's no way you can be adequately treated, based only on TSH.  TSH is a pituitary hormone, that varies, even intraday and SO unreliable for diagnosing/treating thyroid disease.  Additionally, they are using an obsolete range.  The AACE recommended over 8 yrs ago, that the range for TSH be changed to 0.3-3.0.

FT3 and FT4 are the actual thyroid hormones and the only way you will ever get properly regulated is to be tested for them, and adjusting medication according to symptoms.
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23 Comments Post a Comment
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649848_tn?1357751184
Please post your current thyroid hormone levels (TSH, FT3 and FT4), so members can better assess your situation.  Make sure you post the reference ranges, as well, because these vary from lab to lab, so must come from your own report.
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Avatar_f_tn
I don't know.  I can try to find out. I don't usually ask, I just go get the new dose and take it. What is the reference range you are talking about?  I am now taking 0.137 mg. of Levothyroxine, when she called to tell me the test came back too low and they were droping the dose from 0.150 to 0.137. She stated I had to get it regular before I start having some major problems. I have already starting getting worse with my GI, mood swings, being tired.
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Avatar_f_tn
ok I just called and the normal range they are looking for is 0.450 - 4.500 ( I believe this is what she said ) for TSH. They no longer do the T3 and T4 test. Mine is 0.128. She said it is more than likely that it is due to the baby I had in Feb of this year and then the surgery I had 2 months ago for a historecetomy. She said I should be fine, but I have to go back every 6 weeks for the blood work.
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649848_tn?1357751184
There's no way you can be adequately treated, based only on TSH.  TSH is a pituitary hormone, that varies, even intraday and SO unreliable for diagnosing/treating thyroid disease.  Additionally, they are using an obsolete range.  The AACE recommended over 8 yrs ago, that the range for TSH be changed to 0.3-3.0.

FT3 and FT4 are the actual thyroid hormones and the only way you will ever get properly regulated is to be tested for them, and adjusting medication according to symptoms.
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Avatar_f_tn
They said they do not do the T3 and T4 test anymore because they already know I am Hypo. I do not have a thyriod anymore. So what do you suggest? Finding another doctor that will test for all 3 test? The problem is I don't have inc. to help pay so maybe this is why they only do the TSH test. I don't know what to do. They have done a great job keeping me in a good place until this year. I have had a lot of things going on.
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1202943_tn?1347844252
I would find another dr who will test Free T3 & Free T4 if you can afford it.   I've learned that it's hard to find a good dr who is really up to date on thyroid issues. I'm still trying to find one myself.  Your health is worth the money or effort of finding them.  Most of us with little to no thyroids left, usually do better on a T4/T3 combo and can no longer rely on TSH.

Check out this link on finding a good dr:  
http://www.medhelp.org/posts/Thyroid-Disorders/DO-YOU-H-AVE-A-GOOD-THYROID-DOCTOR/show/1631528
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649848_tn?1357751184
You can either find a doctor that will test FT3 and FT4 or there are websites from which you can purchase the tests for approximately $85.  You order the tests, they send you a lab order and tell you which lab to go to.  It takes about 2 days to get results.  Once you get the labs in hand, if your levels are low, your doctor might listen to you.
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Avatar_f_tn
Thank you guy for answering my questions. I will look into finding another doctor if   I can't get my doctor to do more test. Thank you!
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Avatar_f_tn
I was wondering though, Is musle pain and headacks due to low or high levels as well? My shoulders will not give. I am hurting pretty bad and is causing the worse headacks.
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649848_tn?1357751184
Hate to sound "wishy washy"; muscle pain is often associated with hypo
but headaches are often associated with hyper; be aware that symptoms can "cross over", so those could be either....

We really need to see labs to comment further.
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Avatar_f_tn
I had not been on this site in some time... things are getting worse.. I have still been going around 6 weeks to the doc. They called me to ask if I am taking the meds as told.. I said yes. she said then I am getting a new dose turned in and that I am to come back again for another TSH test in 6 weeks. I asked for the T3and T4 to be tested and she is going to ask the doctor. I asked what was the reading and she said 7.4 for the TSH  If they dont find something out soon I will have to find a better doctor. I am not really ready to go down that road, but I can no longer feel this way. My daughter is 1yr and 3months old and have not been right since then. when she was 6 months I had the part-hystorecetomy...ANy one know of a great Thyroid Doc in Spartanburg SC
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Avatar_m_tn
Sorry, but I no loner have a member recommended doctor for that area.  The one I previously used has retired, unfortunately.  I can offer this listing from the Top Thyroid Doctors listing for South Carolina.  Patients are not always completely happy with doctors from these listings, but it is better than cold calling.  You can learn a lot from reading through the patient feedback for each doctor.  I noticed there is one in Traveler's Rest, that had lots of patient feedback.  And there are several others nearby.  

http://www.thyroid-info.com/topdrs/southcarolina.htm
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Avatar_f_tn
thank you for the link I will givei it a try...If I had a computer at home I would be able to get on her more... thanks again!
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Avatar_m_tn
Didn't quite understand, but just to make sure, I'm sending a Private Message with the Doctor's name.   Click on your name and then click on messages, shown in about the middle of the page.
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Avatar_f_tn
So I have asked for the T3 and T4 test.. But I should have asked for the Free T3 and Free T4.. I have had problems since Feb. but now I hurt so bad in my hips and shoulders. I was hurting in my whole rib cage yesterday and went to the chryo and he said due to the muscle swelling there was a rib out of place. He fixed it and said he thought I have Bursa in my hips. What other test should I ask for to find out why my body is acking this way... I have Graves Disease and now Hypothyridism. So is there any other test any of you think I should also ask for?

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Avatar_m_tn
As members have mentioned, you have to get additional testing beyond TSH.  TSH is useless as the sole diagnostic for thyroid issues.  

You said you asked for T3 and T4.  Have they drawn your blood to do the tests?  
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Avatar_m_tn
One chiropractor near me on a newsletter stated that he often as in very often finds that Hypo patients CONSISTENTLY complain of hip pain.  For whatever that's worth.

You need the FREE T4 and FREE T3.   Otherwise you will most likely get "total".

Total counts both hormones that are attached and unattached to protein.  However once the hormone attaches to a protein it is unusable.  Your body ONLY uses the free (unattached) hormone.  This is why it is so important to test only the "free" hormones.
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Avatar_f_tn
they have not did any blood work or planed to until I was due for the follow up on the 6 week.  I ended up in the ER for MIGRAIN headach, hip, and shoulder pain this last 5/18 friday. They did an another TSH  and it came back as .244 and the doctor said he thinks due to blood work "Aruther"  in my joints but not sure which kind... GREAT!  So from the 5/1 till 5/18 I was changed for 7.4 to .244 with the dose being changed from .137 to .150... I don't know what to think with the blood work. They have me on Loratab and a 12 day Prednisone tablets- total of 48 / 10 mg. I was told to make a follow up appointment with my doctor... So I am going to do that today. I hope we can get this all worked out... I know I have been a bit of a pain on here I am sorry....But I am thankful for you guys!!!
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Avatar_f_tn
ok I have the results:
TSH~ 1.230
FT3~ 3.4
FT4~ 1.66
I still don't feel to good,but maybe it is just not been at this level long enough. I tried to get appt. with the Doc in Travlers Rest, but she is not taking new patients.
There is still something wrong, I have a lot of pain in my joints, back, and hips. Headachs due to muscles ragging with swelling. Need to see a RA doctor to rule out RA. Doc was suppose to give a refrral to one, but turned out to be a endo doctor..so I am waiting to make appt to make sure this is the doctor he intended me to see. I forgot to ask when they called with results..
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Avatar_m_tn
Really need to have the reference ranges also.  they usually appear within parentheses to the right of your tested result.

Other than joint pain, what other symptoms are you having?  Particularly Hypo symptoms.
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Avatar_f_tn
Hi Barb hope your well can you post the web site that you said you can have the test done yourself I wonder would they still only charge 85 doller from the uk or would they want more i have to do the test to give me peace of mind and find out for my self what going on with my body but money is tight at mo my doctor just wont do Ft3 because i am in range still ill with all the symtom and guess what he gave me prozak i am not going to bother taking them thanks Nat
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Avatar_f_tn
Well I have not been sleeping well~ going to sleep or staying a sleep.
Neck, shoulders, and upper back in really bad pain all the time. Muscles swellling.  At least 2 a week my legs swell and feel very heavy. Sometimes it hurts to be touched. sometimes it seems as though I can not empity my bladder..  headachs often. I have pains in my knee's and elbows. Crazy mood swings. Not being able to focus too well. Dry hair, skin, and nials. Sometimes my lump nods in my arms and crease of my leg swell.
Sometimes loud noise drives me crazy. I feel like a crazy mess.. I am only 29 years old. I wish I felt better and able to play with my kids more..
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Avatar_f_tn
.045 to 4.50 is what my office is looking for on the TSH and did not ask what they are looking for on the others.. however they said it was all in normal range. but what I seen on the web is still a lil low. but when I take higer dose of 150 It shoot to 244. TSH...
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