Weaning Off Synthroid

[valerie135]

I have been on synthroid for about 2 - 3 years.  Ended up with 1.75 mg (and the test say this is the correct amount).  Well, I do not believe I have hypothyroidism.  My test were always normal until I went to an endocrinologist and they dug deeper and said I had a problem.  My only symptoms were hair loss and being overweight.  I lost my hair when I started taking the pill and then (a few years later), my hair was fully restored when I became pregnant.  After I had my child, went back on the pill and lost my hair again.  That was 16 years ago and never was able to restore the loss (unless I get pregnant again).  It is obvious, due to this pattern, I have hormonal hair loss.  Something hormonal happens to me when I get pregnant that causes me to feel better and regrow my hair.  After many treatments, trial and error, dermatologists, endrocrinologists, etc., I have decided to try the holistic route.  It has worked for a woman with the same symptoms as me, so it is worth a try.  Synthroid has done NOTHING for me.  I feel and look exactly the same as if I never took it at all (even though my tests say it is working great).  So, I have decided to wean myself off before I take the many tests my holistic doctor will prescribe.  Any thoughts on how to wean myself off, if this the right thing to do and should I even be using this treatment at all if nothing has ever come of it?  Thank you.

[Barb135]

newfoundfreedom360 has not been heard from since her post in 2011, so we have no idea how she turned out.  I strongly advise you not to go off your thyroid medication.  

No one here is a fear monger when it comes to needing thyroid hormones.  You can not live without them.  If you aren't doing well on Synthroid, it's because you, either, need a different medication or a different dosage.  

It's also possible that you have vitamin deficiencies that often go along with hypothyroidism.  

I'd recommend that you start your own new thread and post your most current thyroid hormone levels, along with their reference ranges and whatever symptoms you have.  

If you think you need a different doctor, let us know and we may be able to help you find on in your area...

[Kelwil]

This gives me great hope. I feel right now like my life is over. I can barely get off the couch. I am going to try exactly what you are doing. I have nothing to lose at this point. Thank you for debunking these fear mongers. They have scared me to death about going off synthroid, but my quality of life is so low I am desperate to change this. Wish me luck and congrats on your new and improved life!

[jellybeanboys]

I have Hashimoto's Disease and am currently on 50mcg Levothyroxine.  My hair loss is definitely due to the levothyroxine.  NO DOUBT ABOUT IT.  I've tried Levoxyl and Naturethroid, both with other horrible symptoms, leg muscle cramping, severe constipation and abdominal swelling/pain for two months! (it looked like I was pregnant and I'm as skinny as a toothpick!)  Went back to Levothyroxine and one month later, severe hair loss again! I also have insomnia (can fall asleep since I'm so tired, but I don't sleep well and wake up in the night).  BTW, my hair growth was just fine for the six months I was on the other drugs.  Now, I am considering weaning myself off Levothyroxine  I realize I need to take something for hypothyroidism but don't know what else to try.  It seems there aren't really any good drugs out there.  Severe hair loss and insomnia are NOT ACCEPTABLE side effects on a long term basis-i.e. the rest of my life! I don't believe the doctors really know much about the drugs and drug companies just care about selling drugs.  Meanwhile, we are out here suffering...

[Barb135]

This is a very old thread and your issues would get much more attention if you start your own new thread, for which instructions are just above your post.  

We need to know exactly what your test results were, reference ranges for them, since ranges vary lab to lab; what antibodies were tested, what medication you're on, at what dosage, and how long you've been on it.

[dawnmarie195]

Hi! I am so confused! I am on 100 mcg of Synthroid, but I am having flu like symptoms about three days a week! My TSH was low, free t3 was normal, free t4 was high, antibodies registered at 221 in the high range. My question is, what are my options? I would like to switch to a different med.,m but don't want anymore testing right now. Please advise!

[Barb135]

This is a very old thread and newfoundfreedom360 hasn't posted on the forum since she posted here, 2 yrs ago.......

There are no "natural supplements" you can take that will replace thyroid hormones.

If you are still having thyroid issues, most likely, your levels are optimized. This could be due to several things, but I'd guess that your doctor tests only TSH, or if s/he does test FT3 and FT4, s/he doesn't really look at them, or thinks that anything "in range" is good enough...... that's not correct.  

Since you've commented on such a very old thread, it would be much better if you start a new one of your own, by clicking the orange "Post a Question" button, then type your question/comments, and click the green "Post a Comment" button...... you can also go to the home page of the thyroid forum and do the same thing...... home page is:
http://www.medhelp.org/forums/Thyroid-Disorders/show/73?controller=forums&action=show&id=73&camp=msc

[Regainingmyself12]

How long from the moment you started weaning yourself off levothyroxine and started the natural approach did you feel this good?
Did you start taking the mentioned dosages of the natural supplements that you currently take from day 1 of weaning yourself?
I'd very much like more details on the process as feel as you did, that I've lost myself the passed 5 years since on levothyroxine.

[Barb135]

We haven't seen Simela on the forum since she posted her comment above back in 2010, so I don't think you will get an answer.  

Could your dosage be 200 mcg, rather than 200 mg?  

In regards to cutting back on your synthroid - what are your current thyroid hormone levels (not just TSH, but Free T3 and Free T4, as well)?  Your current levels, along with symptoms, would determine whether or not you should cut down on your dosage.

[sandtramarie]

Hi , I am about the same age as yourself and I have been on synthroid for years. at one time I stopped taking them and my hair started falling out in 3 to 4 weeks after stopping. so I went back on . my dossage is very high  200 mg synthroid . but my dr. is one of those who thought she was helping me to lose weight after I had already lost 130 lbs. so now I am thinking on cutting my pills down also. how  much was your dossage? and how are you feeling now? I know you are not a dr. and I am well aware everyone is different. any input would be apreciated . thanks .

[Barb135]

Forgot to mention that this is a very old post and the original poster has not been around for a very long time, so I doubt she will answer.

[Barb135]

Most people have to remain on thyroid medication, once they start on it.  Even if you don't have antibodies now, they may show up later, or you may develop a goiter or nodules, even if you don't have them now.

Taking a daily pill is a very small price to pay for staying alive, whether you take medication for anything else or not.  If you had high blood pressure, you wouldn't hesitate to take medication for it, as long as your blood pressure stays high without it; taking thyroid medication is the same principle.    

[Shellabell34]

Hello,

I was just wondering if your method is still working. I have been on Synthroid sense November of last year. I encurred this problem after giving birth to my daughter who is now 19mths old. I was told it could be temporary but docs keep saying take the meds. Currently still on 50mcg of Synthroid but so desperately want to come off because i take meds for nothing else plus i dont want this to be a permanent issue. I've had normal ultrasounds of the thyroid and no antibody present so i dont have Hashimoto's Disease and am just looking for encouragement.

Shella

[gimel]

If you have no thyroid gland function left, then I worry that you will become very hypo without taking thyroid meds.  Those supplements you are taking will not fully replace the thyroid meds.  I know that you were not happy with the result of your Synthroid.  I expect that was due to inadequate/improper meds, rather than the Synthroid itself.  If you will post your last thyroid test results, and reference ranges shown on the lab report,  I'd be happy to help interpret the adequacy of your testing and treatment.

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting the biologically active thyroid hormone levels, Free T3 and Free T4, as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not test results.  If you want to read more about clinical treatment, have a look at this link.  It is a letter written by a good thyroid doctor for patients that he consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.  Compare this clinical treatment to what you have gone through and I think you can readily recognize that you need a new doctor.

http://hormonerestoration.com/files/ThyroidPMD.pdf

I also sent this by PM just to be sure that you saw it.  

[newfoundfreedom360]

I am hypo and have been on Levothyroxin for 10 years after thyroid surgery and cancer.  Recently I weaned myself off by cutting the pill in half for a few weeks then stopped after that.  I replaced it by taking natural sea Kelp 225mcg, Selenium 100mcg and L-Tyrosine 1000 mg.  I have never felt better.  After taking the L-Tyrosine I noticed the brain fog lift and my mood change the same day.  The greatest reason I stopped the Levothyroxin was because it had caused me to gain 60+ pounds in that time I had taken it which is far more unhealthy and I couldn't shed a pound no matter how little I ate or how hard I worked out.  If you read on the web there is a multitude of patients that are experiencing the very same thing.  Massive pounds monthly without any changes in diet.  I never really felt that great while on it either.  I weighed 155 before my surgery 10 years ago and recently weighed 215 on the scale which is ridiculous.  So many of the physicians say you lose weight on it but most report quite the opposite for those that are Hypo.  Every week I put on more weight and felt terrible.  After weaning off the thyroid meds and supplementing with the Kelp, Selenium and L-Tyrosine, Calcium/Mag/zinc, I feel like a new women again (like myself.)  I'd lost who I was for 10 years and settled for that lifestyle because my famous Endocrinologist said my levels were normal and had me taking .150 then recently dropped it down to .137 since the cancer is gone.  I have new zest for living, I'm happy, energetic my libido is back, my hair looks great.  I had some severe headaches initially while weaning myself down and off of this synthetic drug, but that was it.  and NO i didn't end up sick, or in a COMA, or DEAD!!  Like all of the end times preachers said.  I feel better than before I started the medicine and it's been 1.5 years so that is a myth.  Good luck in going natural and winning!  :0)

[Barb135]

AR-10 was not suggesting that the person stop taking synthroid - please note that he said: Quote: "You don't have to ween yourself off Synthroid. You can just stop taking it tomorrow. I've been taken off Synthroid twice, and both times I was told to stop immediately, no mention of needing to stop gradually.

I think you are making a big mistake." End Quote..........

Your "bioresonance therapy person" might be able to help with your symptoms, but he can NOT cure you of hypothyroidism.  

You will be making a big mistake if you stop taking your medication.  You won't necessarily know within 2 months...........

[lbgt49er]

hi I'm on synthroid. And wanted to know how to wean off of it too.  So I will take AR10 advise and come off of it.  I only started the med 5 months ago and felt quite better within the 2 month period they say.  and my thryroid tests come normal. But overall I've been still feeling very poorly with allergies, low blood pressure and such, so I came across a bioresonance therapy person and he is ridding me of many of my ailments. I've tried many things in the past - medicinally and holistically and now I think I've found a miracle...so we'll see. I'm going to drop the synthroid and I'll know within the 2 month period if I really have to get back on it...at least in my case my thryoid was low but I can still function, so it's worth a try. thanks forum... I'll let you know if dropping the synthroid asap caused me problems

[Smilerdeb]

You are at high risk of myexedema coma.....as the T4 hormone which converts to T3 hormone regulates every organ in your body.
Basically you are shutting down your own organs and will get very sick and can die.
Have you never been told this?

Sorry to be blunt but you are harming yourself by stopping your meds especially after 15 years.
You may feel fine now but give yourself another few weeks and you will find yourself in trouble with a range of different symptoms which may require hospitalisation.

See your Doc before its too late.

[simela]

I was taking synthroid for 15 years and I stopped 8 months ago.  Yes my tsh has gone up to 25 but I feel the same, no difference.  

[ngla]

I was on that garbage for nearly 7 years. There was never any benefit from it, in fact, I felt worse. I had pretty much constant diarrhea, extreme joint and muscle aches, swelling, my left leg became larger than my right leg, I itched all over (esp. my scalp), it felt like I had a constant film over my eyes. I felt jittery and my hands were shaky. My blood pressure increased and it had always been on the low side. I originally had a TSH test as part of a nursing school enrollment physical. My TSH came back as 33. My GP placed me on Synthroid straight away saying I'd have to be on it for life. He told me I had Hashimoto's thyroiditis (autoimmune). I stayed on that medication for years, complaining about all the weight gain and extreme tiredness. I had every cardio test going with no problems being found, except elevated blood pressure. They wanted to stick me on BP meds and get me on that roller coaster, because that is what happens when you see a doctor. The first reaction is throw a pill at it, then you have to keep going back for periodic visits, regular cash cow, easy money for years. That is, until you lose your health insurance and cannot pay all these expenses out of pockets. Then you hear we wish we could help you, come back when you are able or get insurance again...and I was even told good luck. That turned out to be my blessing. I could not afford the two visits (one to pick up my lab slip and one to get my results) and the lab work, which hey, they do right there in their office just to keep most of the money in one place--you also get a bill from wherever they send the specimen to). Since I could afford none of those but did not qualify for Medicaid, I did not get any script for Synthroid. I wasn't their problem. So I figured I would start feeling very ill without my medication I needed 'for life'. I felt a little off for a couple of weeks, felt a few stinging pains in my neck and thought here I go---then I started feeling better. Gradually much better. Of all the problems I stated before, well, I am stuck with all the weight that accumulated on me in that time and my blood pressure is still a little elevated but I am dieting to get that weight off slow but surely. I since have gotten insurance, went back to the last doctor I saw, had another TSH and T4 done. The doctor put me on 15 days emergency dose of Synthroid which I did not want to take but thought I would to see if the problems came back--and they surely did so I can definitely say it is the Synthroid causing them.
My doctor was waiting to tell me how high my TSH was---it was within normal range, after about 8 months of no TSH supplementation. I told her how much better I felt without it and how the symptoms started up with the emergency 15-day script they gave me. For me, it was like a gift from God that I lost my insurance or else they'd have kept me on that crap for the rest of my life, feeling horrible and it doing who knows what kind of damage in my body because I was taking something I did not even need. Plus all the other meds that get thrown at you to deal with the side effects...sometimes a bit of bad luck can be a blessing in disguise. My doctor still wants to check it again in a month and if it still normal, then she will concede I don't need to be on Synthroid. I have read different research/articles that have stated initially when someone is diagnosed with Hashimoto's, the first response is to give anti-inflammatory medication, then do a TSH, because sometimes, once the inflammation is resolved, the thyroid function returns to normal. I wonder how often that first step is taken. It appears that most GPs rush to put people on Synthroid without even trying this. I believe I fell into that category and am just so thankful that my thyroid is still working on its own.

[gimel]

Unfortunately most doctors only pay attention to TSH in diagnosing and treating a potential hypothyroid patient.  I say unfortunate because TSH is supposed to accurately represent your thyroid status.  Wrong.  TSH is affected by so many things that it has only a weak correlation with the biologically active thyroid hormones, Free T4 and Free T3.  TSH has only a negligible correlation  with the most important consideration, which is tissue T3 effect, which determines a person's thyroid status.    So TSH is useful for diagnosis only when at extreme values.  The most important indicator of a person's thyroid status is symptoms that occur more frequently with hypothyroidism. If those symptoms are present then the patient should be further evaluated with extended testing, including Free T4, Free T3, Reverse T3 (at least at the beginning), cortisol, Vitamin D, B12 and ferritin.  The latter are important due to their effect on the body's response to thyroid hormone.  

Many times a hypothyroid patient starting on T4 med will find their thyroid levels do not change.  That is because the med causes TSH to drop and thus less natural thyroid hormone is produced by the gland.  Since serum thyroid levels are the sum of both natural thyroid and thyroid med, only when the dose is high enough to essentially suppress TSH, will further increases start to raise Free T4 and Free T3 levels.   A recent important scientific study concluded that,  "Hypothyroid symptom relief was associated with both a T4 dose giving
TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range. "

So my suggestion to you is that rather than eliminating the Synthroid med, why not get all these needed tests done and see if you are being adequately medicated or not.  I expect that there was a good reason for you being started on thyroid med.  I also expect that as typically done you were never adequately tested for all the important things, nor medicated adequately to achieve euthyroidism, and relieve your symptoms.

If you want to confirm the validity of what I have said, just click on my name and then scroll down to my journal and read at least the one page overview of a paper on Diagnosis and Treatment of Hypothyroidism: A Patienti's Perspective.

[terri thyroid]

hey valerie -

Believe me graveslady knows and AR too - ask your doctor if you could try another brand perhaps - I like Levoxyl okay - we all have a preference - I begged doctors to diagnose me with something since I was 16 had hair loss & all symptoms of lo thyroid but didnt know thats what it was - and yeah when I was pregnant I felt the best ever - some docs think the body concentrates on pregnancy instead of attacking thyroid - makes sense - pregnancy over- hair gone - so I know what you mean - and remember thyroid controls hormones and those really affect hair - I still want my eyebrows back - ?? hang in there Terri

[AR-10]

You have been on Synthroid for about 2-3 years.

Your tests were normal till you went to an Endocrinologist. Did your General Physician run thyroid blood tests before you went to an Endocrinologist? What were the results?

Your only symptoms were hair loss and weight gain. Is that before starting thyroid treatment?

Your thyroid test results now fall in the normal range? What are the numbers?

I don't see how you could be taking a fairly large dose of synthroid for over a year and have recent blood tests showing you in normal ranges and yet you feel you have no disease.

If your thyroid was functioning normally and you took Synthroid for a year it would make you very sick.

You don't have to ween yourself off Synthroid. You can just stop taking it tomorrow. I've been taken off Synthroid twice, and both times I was told to stop immediately, no mention of needing to stop gradually.

I think you are making a big mistake.

I think your hair loss is from disease, not medication.

I think you will be sick before your holistic therapy kicks in, if it ever does.

I could be wrong about the hair loss, but I am not wrong about the fact that a healthy person cannot take Synthroid for years without becoming Hyperthyroid. You are not hyperthyroid, so your body is using the drug to your benefit.

I did say I think you are making a big mistake, didn't I?
Well, it's worth repeating.

[GravesLady]

when you say synthroid has done nothing for you, you are saying that your own thyroid is doing nothing for you,  because t-4 thyroid hormone supplements are made exactly the same as our natural thyroid hormone.  this tells me that your thyroid is not working a 100 percent properly, therefore you need t4 supplements. this of course would be based on your doctor and your levels.

hair issues do run in families and its just a matter of genes in a lot of patients  or many more health conditions. what ever your pregnancies did for you hormonal wise, maybe there are shot or medication for the same.  just a dumb thought.

playing your own doctor might be more harmful and dangerous than you realize. herbs in themselves can be dangerous, there are so many impactions to them.  just because it worked for this one person doesn't mean it will work for you.  I do believe in them under a professionals advisement and your thyroid treating doctor, but as an add to t4 supplement.

if you are going to wing off synthroid, I suggest you do in under your thyroid treating doctors guidance.

from one thyroid patient to another, I think you will be making a mistake and possibly healthwise.  you could go way hypo causing irreversable health damage,  not to mention coma and/or death. or causing symptoms more horrendous than hair lose and weight.  if you let yourself go to hypo and you wouldn't know without doctor and thyroid test, it will take longer to heal from  acquired symptoms and to get levels to normal and stable levels, possibly taking years, years more than already, from you healthy and precious life.

thyroid is no big deal as an illness with treatment compared to other health and accidents issues.

I wish you would think on this more and get advice from doctor before you get into alternative treatments.  be kind to yourself and you health and consider the effect this would have on you family if something were to go wrong.  you and your are precious, you all deserve better and the best.

good luck in whichever route you chose, i just hope and pray it is the correct one.
best regards from a concerned thyroid patient to another.