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Avatar universal

Still have symptoms, but taking Synthroid

Hi,  I take .50 mcg of Synthroid, but still feel tired, crazy thoughts, not hungry too much, moody, rage, very bad emotional periods, and much more.  Do you think this means I need an increase in Synthroid?  

What is happening to me?  Please help!!
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Avatar universal
I started with Tirosint probably about the same time you did.  I'm curious how you feel now.  I feel as though my symptoms have only gotten worse.  The first few days or even couple of weeks seemed ok but it has been a down hill battle since. I've been researching all the possible reasons and there are so many that it is almost impossible to figure out without a professional's advise.  I'm really starting to wonder about food intollerances.   I have an appt with a new endo tomorrow and hoping to get some answers and feel well again.
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Avatar universal
The last two comments are basically a duplicate posting.  I've copied and pasted my above answer into the new thread:

http://www.medhelp.org/posts/Thyroid-Disorders/New-to-hypothyroidism-and-worried/show/1689296

It would be best to continue the discussion there.
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Avatar universal
100 mcg is a pretty high starting dose.  Once you've been hypo for a while, it takes time for your body to get used to having thyroid hormones available again.  It might have been better to start at 25 or 50 mcg.  

Did your doctor test FREE T3 and FREE T4 as well as TSH?  FT3 and FT4 are the actual thyroid hormones and much more important, along with symptoms, in meds decisions.

"Im nervous, I get dizzy and hot easily."  It sounds like you might be overmedicated at the moment.  How long has it been since you reduced to 50 mcg.  Yes, it WILL go away.

I highly doubt you've done any permanent damage.

I have to say that I don't like your doctor's approach a whole lot.  100 mcg is a high starting dose.  It's better to start off low and increase as needed and as tolerated.  How long after starting 100 mcg did he test your TSH again (when it ws 0.88)?  Also, meds changes have to be made in small increments.  Starting you off on 100, then cutting your dose in half without looking at FT3 and FT4 is going to have you doing exactly what you're doing...swinging from hypo to hyper (overmedicated) and back again.

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Avatar universal
My hair started falling out out of the blue.  I had my thyroid tested and my TSH was 10.13.  I was put on levothyroxine 100and mcg.  I was feeling horrible.  Panic attacks, confusion, muscle pain.  They tested me again and my TSH was .88.  He cut me down to 50mcg and switched me to synthroid.  I am having other weird symptoms.  Im nervous, I get dizzy and hot easily.  I just don't feel like me.  Will this go away and has anyone had this happen?  Im worried this medicine has messed me up for good.  I already have other issues with Crohns disease.
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200220 tn?1361951554
That post was from 4 years ago.  Alot has happened during that time until now.  I was hospitalized 2 times for thyroid induced anxiety-depression.  God really worked that for good for me and at this point I am getting a handle on my life.  No more anxiety and depression.  I still have some thyroid symptoms but my numbers are in range.  I don't go by the numbers as the doctors do so I am still working on my symptoms.  I still have stomach problems.  I am eating gluten free.  I have changed endos and she is much easier to talk to and specializes in thyroid disorder.  I also am starting this week on the new thyroid medicine Tirosint.  It is synthroid in a gel cap with no additives.  I would get pain every time I took my thyroid med and I hope this will stop that.  Thank you for answering my post.  This is a good place to air our concerns and to get the thoughts of others.  I have learned alot on this site.  
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Avatar universal
I was having the problem where my levels kept bouncing from high to low and back again. It never stayed in 1 place for long. I talked to my endo about having my antibodies checked and that was the answer. My thyroid was going crazy trying to admit the needed dosages to fight against my body fighting it. I was diagnosed with hashimotos thyroiditis. This can include symptoms of both hyperthyroidism and hypothyroidism. I go from being really hot,sweaty and nervous with my heart pounding out of my chest to feeling like i cant even remember my name. The changes happen while taking the same dose everyday and all my levels under control. I get these feelings sometimes for days or months apart depending on how my body is fighting with my thyroid. If you cant seem to get your levels and feelings under control talk with you endo about doing an antibody test on your thyroid.
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Avatar universal
Let me verify first...your FT4 is 0.04.  Is that correct, or it it 0.4?  Also, what's the range?  Reference ranges vary lab to lab and have to come from your own lab report.

So, you are taking huge doses of levo, but your TSH refuses to go down, and your FT4 refuses to go up.  

Has your doctor ever tested FT3?  How do you feel?  Do you have lots of hypo symptoms?

The very first thought that comes to mind (although you've probably thought of this, I'll throw it out anyway) is an absorption problem.  Do you take your meds on an empty stomach and not eat or drink anything for half to one hour after?  Do you take all other meds/supplements at least four hours away from thyroid meds?  Do you have any known gastro-intestinal issues that might be stopping you from absorbing the meds in your gut?
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Avatar universal
Ii have been battling hypothyroidism for 10  years and has never been in the normal range. The lowest that is have ever been is 23. I am currently taking 350mcg 5 days a week and the other 2 days I take 525 mcg. My last tsh was 77 anad my free t4 was .04 which has the endocrynologist stumped.  I have had hashi test done which was ok. If you know so much about hypothyroidism, please let me know what else I need to have the dr check.
Thanks.
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Avatar universal
I know what your talking about,one side of your body feels weird,had it for months,went to hospital  for two days,after many,many tests,dr told me it was from anxiety,so now when I get that feeling I do deep breathing and it goes away.I also have a bad thyroid,so maybe it is related,it is weird though but don't worry too much.
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Avatar universal
I am on medicine sinds one and a half weeks and feel much more energy. I also felt somewhat anxious and when I go to sleep I feel as if my attention is drawn to the left side of my body. As if I am more aware of that side, as if it is bigger. Real funny and weird. Anyone felt this way too?
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Avatar universal
I'm glad to hear that you've done your research...the more of us that do, the better (hopefully) thyroid disease will be understood.  However, I'd like to correct a couple of misconceptions.

Synthroid (or any other thyroid replacement hormone - TRH) is not causing the symptoms you mention.  This often appears to be the case for two reasons.  

#1 - TRHs, like Synthroid, take four to six weeks to reach a stable level in the body.  During that time, symptoms can continue to get worse since FT3 and FT4 are still low.  Furthermore, symptoms often are not alleviated until several weeks to several months after FT3 and FT4 levels have reached their proper levels FOR THAT INDIVIDUAL.  

#2 - Thyroid is hugely misunderstood in the medical community.  Often doctors increase TRH until the patient is "in range" on FT3, FT4 and TSH.  Since these levels may not be adequate for an individual, many patients are left hypo (complete with the symptoms you describe) because their doctors are UNDERtreating them.  Your friends should make sure their doctors are testing FT3 and FT4 as well as TSH.  Then they should insist on TRH increases until their symptoms have been relieved.  TSH is a very poor diagnostic in evaluating thyroid status...it's a pituitary hormone.  T3 and T4 are the actual thyroid hormones.

There are many other reasons why Synthroid may appear to exacerbate symptoms...conversion issues, etc...but that's another day.

Iodine deficiency...if you are truly deficient in iodine, ingesting iodine can improve thyroid function.  However, if you are not, it will not help your thyroid.  Iodine deficiency is virtually nil in the U.S. (and actually in most of the world).  Unless you are very "pure"...never eating out, using uniodized salt, never eating prepared foods, etc., there is little chance that you are iodine deficient.

You should insist on more testing.  As I said, TSH is a very poor diagnostic.  Have you had FT3 and FT4 tested?  These are much more important than TSH.  You might also consider antibody testing (TPOab and TGab) to see if the cause of your thyroid problems is Hashi's, an autoimmune disease).  It's the most prevalent cause of hypo in the U.S.  

If you don't have hypo symptoms, that's very positive.  However, if you do, then I think all your arguments against taking TRHs are a bit moot.  Most hypos have suffered and felt like absolute cr@p for months or years before being diagnosed. The prospect of having to take a pill for the rest of your life becomes a bit less daunting under those circumstances.  Preserving your own "natural" thyroid function doesn't mean a thing if that function is not adequate to keep you well.

If I were you, I'd make sure FT3 and FT4 were tested.  I'd also keep my eyes open for hypo symptoms.  You could possibly have had one of the "temporary" forms of thyroiditis, you could have been iodine deficient (unlikely), but if your thyroid dysfunction was caused by a permanent condition, it is likely to keep getting worse...sometimes very slowly, sometimes faster.

I have to admit, I would not be talking to anyone with a TSH of 8.5 about myxedema coma...that's ridiculous.  But being hypo is not good for your general health...it can effect every part of your body.  And furthermore, it can make you feel like you're going to die.  As my dad used to say...feel like you're gonna die, but afraid you won't...    
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Avatar universal
A year ago my doctor did a gateway panel blood test on me. My TSH was at 5.2 so she gave me some samples for Synthroid at .88 to start me out. I asked how long I was going to be taking this drug –because I don’t take drugs with out research and really good cause– when my doctor told me I would be taking this drug for the rest of my life, I could not accept that.  So I went home and did my research. I may not have believed every thing I read, but enough of it seemed to be saying the same things. What I read scared me. A lot of women were having an adverse reaction to taking Synthroid. It seemed to enhance the symptoms they were feeling already.
Fatigue and weakness
Low basal temperature ( cold intolerance)
Dry and coarse skin
Hair loss
Cold hands and feet
Weight gain
Insomnia
Constipation
Depression
I know a few women personally who had no problems till their doctors put them on Synthroid. A lot of them gained weight and were cold all the time, when nothing had changed in their lives save taking Synthroid.
The next time I got tested almost swayed me. My TSH had gone up to 8.4. That scared me almost more than the fear of having my first prescribed drug to put on a list. I made an appointment with a specialist and did more research. I looked up how the thyroid(s) works, what can put it off its track, and what I might be missing in my diet. Well turns out there were two things that could have been affecting my thyroid. A month before the first blood test I had a tooth filled. That tooth was done wrong and I had the worst tooth ache that did not stop. So, I had been taking the max dose of ibuprofen, and I don’t normally take pain killers. When I went back to the dentist they said they could not find what was wrong, and referred me to a specialist. I was put off with them since they did the filling.
The second reason that could have caused this increase in my TSH levels was a deficiency in iodine. I have lived most of my life on the coast, so moving inland could have decreased in intake of iodine. Here is a good starting place to research this information.

http://en.wikipedia.org/wiki/Iodine_deficiency

I started taking small amounts of kelp, and adding seaweed/kelp to my soup. Which by the way, does wonders for the taste of the soup. I also bought salt with iodine. Kelp is just like eating an orange, it is not a drug nor a, “vitamin”.  
This is my story, it may help someone. I am not a ‘medical’ person. I am some one who likes to control my own body. If I had done as my doctor told me the first time, with out thought or question I would be taking a drug I did Not need for the rest of my life. I have only had health insurance these past three years, for the first time in my life. I do not know what might happen; I might not always have it. What do I do if I can not get these drugs, or do the testing. I am appalled that there was not more testing done to find out what was causing my thyroid to misbehave. Both my personal doctor and the specialist said the same things to me. They used scare tactics, saying words like, infertility and Myxedema coma. That I think was one of the main reasons I got angry and refused to be bullied.
Once you start taking drugs like Synthroid, I think it shuts off your thyroid. And then it is really hard to restart it back up. I do not believe it is impossible, but the longer you have shut off your natural hormone maker, the less likely you will be able to get it going again. By taking this drug you are replacing the natural hormones and telling your thyroid it does not need to make any more. So it stops. Like the milk flow of a mother. Yea I know, that the best example I could come up with.
My body knows how to take care of its self, if I just give it the right tools. If my body if out of sorts then I do not feel like my mind can be as efficient.
Thank you for listening. Hope I don’t upset to many people. This is something I do care about. Good luck to any one who has to deal with this problem in their lives.
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Avatar universal
I was diagnosed with hypothyroid (TSH 6) about 6 weeks ago.  I was put on .001 levothyroxine and my TSH level dropped to .009  (which clearly put me into a hyperthyroid state.... I happily had started to lose 5 of the 30 pounds I had gained.... My doctor changed my dosage to .088 and said I will be retested in 8 weeks.  I have now regained the 5 pounds I had lost and wonder how sensitive the medication is and how long will it take before my weight returns back to normal...
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314892 tn?1264623903
So even though you were taking a double dose (100 vs 50), your thyroid level was the same after 3 months? Was the TSH the same or another thyroid test? Anew blood test will tell if that dose was too high. Don't worry too much for now, but you need new tests.
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Avatar universal
For what it's worth, I couldn't take the generic. It made me sick - nausea, headache, diarrhea, flushed skin across face and neck, every time I took it. I was switched to the brand Synthroid and had no problem taking it! My endo said he doesn't like the generic for thyroid. (PC doc started me on generic and it was awful). I also was diagnsosed w/ TSH at 10 point something and felt terrible!!! Now down to 2 and still don't feel completely well, but I've improved, especially the mind fog. It takea time to recover, and it seems that some symptoms linger. You need full panel of thyroid labs and extensive blood work to see the whole picture and get proper diagnosis. In time the synthroid will help you!!! It just take time as in many months, many!
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Avatar universal
hi; concern like all of you my doctor made a mistake I guess back july I was 50mcg after talking to my doctor  over the phone told me that my tyroid level was the same after three months i don't know why I check the label on my medicine levotroid instead of saying 50mcg said 100mcg i dont know if that it is going to hurt me or what when i realize aftre 2 months of taking it i cut tjhe pill in have try to contact the doctor from KAiser but i am not longer a member the ptramacist try to but they couldn't  geta whole of him just the nurses from his office said i should go and be retested but i don't have insurance wiht them or any body any more is that harmful for my health
ro peru
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Avatar universal
Linda, I am sorry to read that you are still having anxiety attacks.
Maybe you should take the loprazam twice a day to even out, just a thought. Also I think your level and dose is not just right yet. Other than that, I think you are doing right with the breathing exercises, etc.
Remember though, it does take time for most to feel better  once level and dose is correct for them.  I don't know what else to tell you.  Maybe others will have more that will help you, if not help with some confidence and hope. Just keep as positive as possible. I will keep you in my thoughts and prayers.

GL
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200220 tn?1361951554
I have been having anxiety and yesterday started with a little panic feelings.  This has been going on for over 2 weeks now.  I am going to the endo tomorrow for him to feel my neck.  My tsh was 2 weeks ago 5.6 up from 3.5 which was down from 6.7.  He said my t4 is high but he won't admit the symptoms are from thyroid.  My psychiatrist says they are.  I am working on knowing that I have good doctors and they will get me there with the direction of the Lord.  My thoughts are not good at times with fear of the feeling and future and what is going on etc etc.  Is this normal for where I am.  I am having to take almost every day .5 mg of loprazam.  I don't take it until I feel I have to.  What do you think.  I don't know if I want he to increase the levo or not as I don't tolerate it too well but what else can I do to get feeling better and find the level that I feel best on.  He will alternate the 37.5 one day and 50 next.  I don't know where mytsh is now as it has been two weeks and I am having more severe symptoms.  I am handling them with breathing excerises and then the lorazapam.  I went to church today and left to come home and just veg out and relax as best I could.  This is crazy and don't know what to believe.   Can you help or can someone help.  Please.  Linda
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Avatar universal
If you haven't had your thyroid levels checked after the three month of starting Synthriod, you need to do so.

Chest pounding and sweats might suggest that you are over medicated therefore need a dose adjustment.

By all means, call your doctor, especially if you don't feel right.

Good Luck and Merry Christmas!  
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Avatar universal
i have been taking Synthriod for about 3 months and at first it was all ok.i take a 100 also and at night my chest sometimes ponds and i sweat so bad and i just wounder is this normal.should i go see my doctor it just dont feel right.


linda davidson
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Avatar universal
You have to take into consideration that your TSH was/is 10 and it takes time for the new meds to work and  heal thereafter, which might take some time.
Levothyroxine therapy is usually well-tolerated. If side effects occur symptoms are often due to toxic levels of thyroid hormone and the symptoms are those of hyperthyroidism. Symptoms may include all or some of the following: chest pain, increased heart rate or pulse rate, excessive sweating, heat intolerance, nervousness, headache, insomnia, diarrhea, vomiting, weight loss, or fever. Women may experience irregular menstrual cycles.
Levothyroxine is the generic name for the brand names of Synthroid, Levoxyl, Levothroid, Unithroid. They are the same just the name is different i.e. levothyroxine. Generic names cost less with brand names costing more.
"Conclusions.-The 4 generic and brand-name levothyroxine preparations studied are different but are bioequivalent by current Food and Drug Administration criteria and are interchangeable in the majority of patients receiving thyroxine replacement therapy........"
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9103344&dopt=Abstract

Synthroid Tablets Ingredients are: Acacia, confectioner's sugar (contains cornstarch), lactose, magnesium stearate, povidone, and talc. And color additives by tablet strength.
If you felt better on Synthroid maybe it was the sugar boots ;)
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Avatar universal
I am taking Levothyroxine by Sandoz, before I was taking Synthroid which is the brand.  I feel awful after taking three pills of 100mcgs of the Levothyroxine.  I am confused and sweating and fatigued.  I have put in a call to my physician just now.

This is awful, my neck looks large too.

I hope I can get this straightened out.

This forum is good for support Thanks!!
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Avatar universal
A pharmacist should not switch brands with out doctors request.  If brands are switch whether doctor is aware or not, Labs should be done 6 to 12 weeks after. However let your doctor know you switched, if it can be done without his prescription in doing so in the first place. No harm is done to health or levels as long as Labs are done and brand consistently thereafter. It is no different than getting Labs after each dose change. If you are already taking and have been taking generic levothyroxine, in which I thought you were referring to as Synthroid, you are fine.

I sometimes forget to say "with doctors knowledge and approval". Never change meds or dosage on your own, regardless of what thyroid drugs are taken, without doctors knowledge, approval and guidance first.

Sorry for the confusion.
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Avatar universal
It's not a good idea to take generic levothyroxine because your pharmacist could switch brands and the dosage could be off.  It's wise to always stick with the same brand for consistency reasons.
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