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want to stop taking levothyroxine
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want to stop taking levothyroxine

I am 52 years old and have being taking levothyroxine,my symtoms (symptoms),were feeling tired,no energy,weight gain.depressed,Ihave being taking them for four years ,my blood test shows i am taking right amount which is 150 micrograms a day,i am also going throw the change,my symtoms (symptoms) have yet to change if anything i feel worse.I am waiting to speak to my doctor to disscuss this as i fail to understand why i am not feeling any better or why i should carry on taking this medication,I am also taking sleeping tablets which i hate,but if i dont i cant sleep,i hate the way i feel and the way i look,this is effecting my life ,as i was once a happy go lucky person in a size 12 now struggling to stay in 14,I go to a jym and swim nothing seems to change,
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649848_tn?1357751184
Sounds like you were over medicated and needed to be cut back. You should get your levels tested to see where they are.

Every situation is different, but for someone who is truly hypo and has Hashimoto's, they will eventually die without the medication, because we can't live without thyroid hormones.  Once the thyroid stops producing, we have to rely on the medication and if levels are adjusted properly, there should be no hair loss, anxiety (except for non thyroid sources) or excess weight loss.

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Avatar_m_tn
Hi friend, sorry your going to a difficult time.  What type of sleep med are you taking?  And how long ?  Some sleep meds can cause the symptoms you've listed, even weight gain believe or not.    
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Avatar_f_tn
Please post the results of your thyroid blood tests.  Many doctors tell patients that their tests show "they are taking the right amount", but they are not ordering the correct tests or interpreting them correctly.  When you post labs, please also post reference ranges which vary lab to lab and have to come from your own lab report.

Have you ever felt well since starting meds?  Do you know if you have Hashimoto's thyroiditis or the cause of your hypothyroidism?
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1202943_tn?1347844252
Hi, I was on 150mcg synthroid and still having many hypo symptoms with normal lab results.  I added a low dose of cytomel(T3 med) and reduced synthroid to 137 and have had much improvement. Many people do better with a T4/T3 combo.  I'm still trying to find a dr who will let me try armour thyroid.
Please post your results.
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Avatar_m_tn
One sign or symptoms of Hypo is inability to stay asleep.  So you are tired all the time, can fall asleep in 3 seconds, but then don't sleep soundly or start tossing and turning so don't get a good nights sleep.

This happens to my wife and is one of her early signs that she may need a medication increase in Thyroid.

As stated earlier. Please post results. Some times Dr's tell you that you are "normal" just because you are within the reference range.  But for a LOT of people that is NOT good enough.  They need to be in the middle to upper part of the range to feel well.  But the Dr insists that you are fine and keeps you sick or not feeling your best.  This is unfortunately a VERY common situation.
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2055874_tn?1330534053
Thank you all for your comments,I am un sure of even how doctor came to the conclusion of my condition,my self thort it was menopause as its the same symptoms,there just tell me that its normal,im not happy with this at all and going to see another doctor,im taking zimovane sleeping tablets,7.5,their only gave you up to four hours sleep,then have thick head the next day cant win.im so tired of not getting any where it seems their dont care and just fob you off,i would rather have two broken legs at least you know you would get better,I am worried if i just ween my self off them dont seem to get any advice on what to do ,,my symptons the same as four years ago,just now im over weight and losing my hair,
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Avatar_f_tn
It sounds like your dose isn't correct for you and/or you're not on the correct meds for you.

When you see your new doctor, ask him to test FREE T3, FREE T4 and TSH.  Make sure to request FREE T3 and FREE T4, these are different from total T3 and total T3.  

Also, if you don't know the cause of your hypo, ask to have antibodies tested to see if you have Hashimoto's thyroiditis.  They should test both TPOab (thyroid preoxidase antobody) and TGab (thyroglobulin antibody) because some of us with Hashi's are positive for one, some the other and some both.

If you have those tests, you'll know a lot more about what's going on with your thyroid, and your doctor will have a lot more information with which to manage your condition well.

Weaning off your meds is probably just going to make you feel a lot worse.  Get some advice from a good doctor.  
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649848_tn?1357751184
I see that you in UK - we have a few members that tell us it's very difficult to get adequate treatment for hypothyroidism there, due to the NHS standards.  Many have had to go private in order to get the proper testing/treatment.

I agree that you need to get FREE T3 and FREE T4 tested, along with antibodies to see if you have an autoimmune thyroid condition.

I hope you have better luck with the new doctor you'll be seeing.
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2055874_tn?1330534053
thank you for your advice,now i have some imformation ,and know what to ask for maybe get some where,I put my faith in doctors and just walik away with what there have said.but this is something i shouldnt have to live with,not if its affecting my life in such away,my granchildren dont even want to stay with me,to hear from them im always in a bad mood,im not awear of this put everything down to feeling so tired cant be bothered with anything,sad but true,i will ask about this T3 AND T4 ,thanks again,does help because you feel its just you who going throw this,
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2055874_tn?1330534053
thank you for you advice i will let you know how i get on,I have put up the way i was feeling because doctors have said im at my right level.iv always argued the fact if i am why do i still feel the way i do,im not going to stop going to see the doctor untill it is investagated,i only came across this site because i just wanted advice of what would happen if i weened my self off them,glad i did thanks again alison.
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649848_tn?1357751184
Make sure you always specify FREE T3 and FREE T4, or you will get tests for total T3 and total T4 and they are not the same thing.

If Free T3 and Free T4 levels are too low in their ranges, you can still have hypo symptoms, even if TSH is "normal"........ Also be sure to check the reference range for the TSH; a lot of labs use outdated ranges, that are way too broad.
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Avatar_m_tn
Hi, in addition to thyroid labs suggested, Zimovane can cause daytime drowsiness, fatigue, and other side effects.  It's a cns depressant.  Non quality sleep can cause fatigue, depression, Etc... on top of thyroid symptoms.  Discuss with your phyisician.  Make sure if you decide to stop using Zimovane, taper off the medication slowly.  Wishing you well friend.      
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219241_tn?1357815389
Ok I am going to throw in my 2 pence worth and say, Vitamin D3 levels. All of your thyroid woes can also be due to lack of Vit D3. The symptoms are VERY similar and make you feel pretty rotten. Can indeed make you hypo as the body needs Vit D3 to help with thyroid production!
Most people don't realise that in latitudes like UK, the upper and mid of USA and the southern states of Australia DO NOT get enough Vit D naturally. Oh sure you get a ton of UV, but not Vit D! Most people also have no understanding of the relationship our bodies have with Vit D. It is not just about getting our guts to absorb the calcium but it helps with much more than that! Many forms of  depression have been now been now linked to low levels of Vit D3.
I know all this due to the fact I suffered for many many years untill I MADE them test me for Vit D, guess what, I was piddy squat on the chart and I live in sunny Australia. Once I started taking 2000 iu a day, my depression lifted (not immediately, it does take some time) and my tiredness lifted also. HOWEVER, the thyroid issues, like you, were still there, BUT having sorted out one problem I was able to discern that my thyroid levels were the culprit for other issues.

My other advice? DO NOT give up on the thyroid meds at THIS point in time. Boy oh boy will you know about tiredness if you do! I know in UK it is difficult to get FT3 testing let alone much else but I do believe you need to find out WHAT is going on and eliminate down the list of things that are causing you your tiredness etc. Never assume it is just one thing without investingating fully.
Cheers!
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2055874_tn?1330534053
HI i have being tested for D at the same time as my thyroid apparantly normol,and doctor sugested i take black coush which i am,as well as evening primrose,its even hard to get an appointment let alone gettn more tests,I am going to push it untill i get sorted,thanks for your 2 pence worth
much appreciated ali
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Avatar_f_tn
I was put on levoxy, and got panic attacks and anxiety. Though I was losing my mind. Took myself off of it and never felt better, was also losing my hair due to this horrible pill. Got my thyorid checked 2 months later and it was normal. Im going back to get alll those tests done again, ( listed above) and see what the resutls are, but this time Im going to a specialist, not my regualr GP!
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Avatar_m_tn
I was reading through this thread and thinking about the many members we have had from the UK who have all had trouble getting adequate testing and treatment done. largely due to directions from the NHS.  One of our members that was finally successful in getting needed testing and treatment told us the following.  I thought you might benefit from her story.

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"
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2055874_tn?1330534053
YES your right,i,m not going to agree with what doctor says and walk away,at the end of the day he/she only learnt what their know about this thyroid condition out of books .thanks for your advice.
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Avatar_f_tn
I have found dr's say " well, you cant believe everything you read on the internet", and others just say " I dont know anything about that", Im so sick of dr's nowadays.I went thru a barage of tests last summer, with dr's thinking I had some kind of pancreas disease. Knowing a person close to me died last yr of pancreatic cancer, you can be sure to know I was going thru hell, thinking I was now going to die. All MRI's and cat scans showed there was something wrong.( a small amount of swelling, turned out to be nothing) I underwent anesthesia for the dr to look inside me to see the pancreas. When it was all done, I was told my pancreas is perfectly healthy and they didnot know why I was getting stomache pains. I went home releived and crying at the same time cause now, no one could help me. After looking up lots of info on the web, I came across the info about calcium pills can cause stomache pain! I started crushing mine up and drinking it with a small cup of milk, and guess what?  Its been 6 months of no pain in my tummy!!!!!!! I even told the doctors I was taking calcuim and nobody ever thought to think about calcium and how hard it is on the stomache for some people. This is only 1 story of doctor mixups on me. Ill never take levoxythorine again! I wanted off that pill and the dr said NO! I took myself off, started eating for my thyroid and all the symptoms went away icluding all the horrific side effects of the pill. Its so hard to get good help now a days.( I almost went bald on that pill and felt very suicidal, with panic attacks and anxiety and lost so much weight I went from a size 10 to a 6 in 2 and a 1/2 months.)
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Avatar_m_tn
Obviously you can't believe all you read on the internet.  Obviously you can't believe everything the doctors tell you either.  So the best approach is to learn as much as possible and become your own best advocate for your health.  

One thing I will say about the info you get from this Forum is that almost everything I read here I know has substance.  I know I have scientific studies that support everything I post.  I am always glad to supply references to those studies, so that members can read and understand more.  Copies of such links can also be given to doctors to show that there is a basis in fact for what we say.  That way it has greater impact on the doctors, and can influence what testing is done and how it is interpreted.  Of course there are those doctors that already know all the answers and don't want to listen to anything you have to say.  When you run into one of those, the best thing to do is not waste your time and health, just move on and find a good thyroid doctor that is willing to treat clinically instead of just by limited test results.
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2055874_tn?1330534053
well went to see doctor today,explained once again how i am feeling,and that i wanted to say my peace,I asked about my t3 and t4,she glanced at her screen and said im at my level,which i replied,well im not going to carry on taken medicaton,as im not feeling any benifit,reply was no you cant ,and i cant live without it,by this time the tears had come,i ended up coming away with yes even more tablets,for depression,yet she said her self im not depressed but their mite do me some good,she reckons just my hormones,why im tired putting weight on losing my hair,and now prob lose my mind,iv being around a few doctors dont seem bothered,my only concern of coming off them is putting more weight on,im tired all time now so / dont know what to do sick of it all,would go privite,but havnt the funds
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Avatar_m_tn
Totally frustrating, I know.  What part of the UK do you live in?  The reason I ask is that I do know a couple of doctors there that have been much more receptive to doing adequate testing and treatment.  I know it is grasping at straws, but might get lucky.
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2055874_tn?1330534053
hi i live in middlesbrough,my doctors is the village medical centre,i have just changed to this doctors two years ago,i want to stop taking medication im so anxious dont know what to do,iv just rang doctors back because i got my self in bit of a state forgot to ask for print out of my results,their have yet to ring me back,put them on see if any body can make any sence of them because i cant,
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Avatar_m_tn
Sorry, but I can't locate Middlesbrough.  Can you give me some more info as to where it is located?
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2055874_tn?1330534053
north of england,
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2055874_tn?1330534053
just wanted to ask sandra how much you were taking,and did you ween your self off them,im on 150mg a day,my doctor reckons i will just ballon if i stop taking them,i wasnt big to start with,so dont understand.
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Avatar_m_tn
Sorry, no luck.  The 3 doctors that I know about are all way south of you.  

Please do print your test results when available.
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2055874_tn?1330534053
ok will do thanx anyway,
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649848_tn?1357751184
Sounds like you were over medicated and needed to be cut back. You should get your levels tested to see where they are.

Every situation is different, but for someone who is truly hypo and has Hashimoto's, they will eventually die without the medication, because we can't live without thyroid hormones.  Once the thyroid stops producing, we have to rely on the medication and if levels are adjusted properly, there should be no hair loss, anxiety (except for non thyroid sources) or excess weight loss.

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Avatar_f_tn
I was on 25mg's. Lowest dose levoxythorine has, and the panic attacks and anxiety was thru the roof. I got so skinny, my kids thought it was funny to see their mom so thin. Lost my hair in clumps and became insomniac. Couldnt sleep. I got so depressed, and never was depressed before in my life. Dr then wanted me on antidepressants! I said, " are you kidding me?" " another pill to fix yet another pill?" I looked up stories of people on antidepressants and read that if one needs to get off of them, the withdrawals are horrendeous. So I took myself off of the thyroid , started eating for the thyroid, and became happy again. Got my results 2 months later and no thyroid problem, hair stopped falling out, started sleeping again, and never yet gained the weight back, but I dont care, I look and feel good now. Ill get tested again in a few months just to make sure, and if I need the meds, Ill go to a holistic center instead this time.
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2055874_tn?1330534053
TEST.RESULTS.
TEST
SODIUM   RESULT 142 UNITS MMO1/L REF, RANGE(133-146
POTASSIUM RESULT 4.7         MMO1/L                        (3.5-5.3
UREA            RESULT 5.4         MMO1/L                         (2.5-7.8

CREATININE RESULT 62        UMO1/L                           (50-120
GLUCOSE      4.7                     MMO1/L

TOTAL PROTEIN        65         G/L                                   (60-80
ALBUMIN                  42            G/L                                     (35-50
GLOBULIN           23                 G/L                                       (20/50
APL               101                       U/L                                      (30-120
TOTAL BILIRUBIN 9                UMOL/L                                (1-17
GGT                   39                   U/L                                       1-54
ALT                33                        U/L                                       1-40
C-REACTIVE PROTEIN   LESS THAN5MG
TSH           0.53                     MU/L                                    (0.27-42
FREE T4    20.4               PMO1/L          (                        10.O-21.0
REF ,RANGE FOR GLUCOSE FASTING 2.2-6.0MMO1/L
RANDOM 2.5-11.0MMO1/L  THIS IS FIRST LOT STILL CLULESS  







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2055874_tn?1330534053
FULL BLOOD COUNT
HB 13.1g/d (11.5-16)   neutrophils 3.4 52.3% (2-7.5)
WBC 6.5      x106^9/1  (4-11) lymphocytes 2.5  38.5% (1.5-4)
PLT 300   x10^9/1 (4-11  monocytes o.3  4.6%(0.2-0.8
EOINOPHILS 0.2 3.1%(0.1-0.4
RBC 4.04 x10^12/1 (3.8-5.8   Basophils 0.0%(0.0-0.0.2
HCT  0.38 1/1  (0.37-0.47 Atyp.lymphs
MCV 94.5  F1   (77.0-9 METAMYE LOCYTES
MCH32.5 pg  (27.5-32.5 MYELOCYTES
RDW 12.6 %  (10.9-15.7) PROMYELOCYTES
%HYPO 0.40%   (0.00-5  blasts      %

nucleated rbc /  cant make head nor tail of it all .
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2055874_tn?1330534053
hi put my test results on.cant make head nor tail,just wonderd if you can put any light on it for me











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Avatar_f_tn
You only have two thyroid tests in there.

TSH is 0.53 (0.3-3.0), and FT4 is 20.4 (10-21).  You can see that you are very close to the upper limit of the range on FT4.  FT4 is usually best when it's closer to the middle of the range.  Unfortunately, your doctor did not test FT3.  FT3 is the test that correlates best with symptoms.  It looks to me like you're overmedicated and need to cut back a little on your levo.  

However, some of your symptoms also sound hypo, so you really should get your doctor to test FT3.  It’s possible that your FT3 is too low, so you still feel hypo even though your FT4 is too high.  If I were you, I’d ask my doctor to re-run FT4 and TSH and add in FT3 at the same time.

All your other tests look good, i.e.  they're in range, but I'm by no means an expert.  

Do you understand how FT3 and FT4 work together?
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2055874_tn?1330534053
no not realy its all bit confusing,to me.
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Avatar_f_tn
We have two major thyroid hormones, T3 and T4.  T4 is made by your thyroid, and is kind of a "storage" form of the hormone.  It floats around in your blood until it is needed by cells.  However, cells cannot use T4 directly.  First it has to be converted, mostly by your liver and kidneys, into the "active" form of the hormones, T3, that your cells can use.  So, what's really important to how you  feel is your T3 level (FREE T3).  

Your FT4 can be very high in the range, like yours is right now, and you can still feel very hypo if your FT3 level is too low.

Some people convert T4 to T3 slowly, and when that happens, they need to add a T3 medication to their levothyroxine (which is T4 only) to feel well.  

Unfortunately, testing of FT3 and treatment with T3 meds is hard to come by in the U.K.  Many of our members have had to go private in order to get it.  However, i think it's very important for you to do.  Nine times out of ten, someone with your high FT4 level, who still feels hypo, has a conversion problem.  Could you go o a private clinic and at least get the testing done to see if that is, indeed, your problem?  
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2055874_tn?1330534053
thank you for explaining it to me.im affraid going private is not option at the moment,it is something i need to do ,


                 thanks again
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Avatar_f_tn
The other option is to try to talk your doctor into testing FT3.

You FT4 is very high, but you still have hypo symptoms.  I'd ask him to explain why that is.  If he can't, then ask him to run FT3 "just in case" that's a problem.

Best of luck to you...
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Avatar_m_tn
hi. i was dx with hypo. started with 75, but now up to 112mcg of levo. i developed rapid heart rate, lost 15 pounds (in a matter of 7 months though), developed anxiety and migraines. i seen 6 different doctors. the last one finally did a check on t3, t4, and antibodies. waiting for results. previous docs only tested tsh. i complained to everyone something is off, no one will listen and keeps saying to continue to take the 112. well i stopped as of yesterday. yes this is wrong and you shouldn't go against your doctors, but my gut tells me i don't have this hypo..something else has to be wrong because the pills make me feel worse than i ever felt in my life. i am 37, f. we will see what the results are this week. i'm hoping they say stop taking them or put me on 75mcg again cuz that's the only time i felt good.
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649848_tn?1357751184
Sounds like you could be over medicated and may simply need a lower dose, but we'd need to see actual hormone test results to determine for sure.  Many of the symptoms you describe can be associated with both hyper and hypo.

If you have a copy of the latest lab report, please post your thyroid hormone results and be sure to include the reference ranges, since these vary lab to lab and must come from your own report.
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Avatar_f_tn
I feel the same way as alifordo. I've been taking levothyroxine for over a month and I don't feel any better. The first few days I did but then the fatigue came back and nausea came with it. My upper back feel oily too. And my pants are getting tighter! I've been reading that your thyroid needs iodine from kelp and Selenium, L arginine, and L-tyrosine to help with the conversions your thyroid does. I actually feel better taking these supplements then I do the levothyroxine. I'm going off this med and I'll see if the supplements alone help because my thyroid is struggling from the lack of to begin with. Readers, look up Gloria Gilbere. She has done some amazing research on the thyroid and she treated hers with natural supplements.
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649848_tn?1357751184
It's true that the thyroid needs those supplements.  The thyroid produces the hormones, but the conversion isn't even done in the thyroid.  The majority of conversion is done in the liver, smaller amounts are done in other organs.

If you have Hashimoto's Thyroiditis, iodine can make make things much worse, rather than better.  If you have Hashimoto's and there's already damage to your thyroid, nothing is going to repair it.

One month on levo is not long enough.  It takes at least 4-6 weeks for the med to even reach full potential in your blood, then your body has to have time to get used to having them, and get well.  

Additionally, it's most likely that you are only on a started dose, which means that your dosage will have to be increased as time goes on.  Most good doctors will start their patients out on a very low dose and increase as needed, depending on labs and symptoms.  Your symptoms indicate that you probably need an increase.

I certainly would not recommend going off medication; things will only get worse, if you do.
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