I have stopped the medication: I was given two... - Thyroid UK

Thyroid UK

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I have stopped the medication


I was given two blood tests initially and was told i was borderline told to not worry. I am perimenopausal but in pretty good health. I had symptoms similar to those described with a low thyroid issue i was prescribed 50mcg of levothyroxine...as soon as i started it bloated me i felt worse. I called in 6 weeks to describe the debilitating bloating and nausea and was put up to 100mcg.....two weeks later and a rapid weight gain of 12lbs i called again to tell them i felt diabolical! bloated beyond belief and feeling dreadful i was put up to 150mcg of levothyroxine....NOT ONCE did the doctor ACTUALLY SEE ME FACE TO FACE! not ONCE did they ask about lifestyle or diet or indeed offer any advice!

I called them last week to discuss coming off the tablets they said don't and wanted to put me on antidepressants i told them no thanks......

I have done more research and to be honest i think the medical industry are using us all as lab rats. All i have seen is conflicting advice, nothing seems to be straightforward and many GPS do not know enough about this so called life threatening condition in order to treat it effectively.

I have looked into alternative therapies now. My thyroid was borderline so i guess that means it was still working albeit under some strain, but with changes in diet i could actually reverse the TSH readings which is what my diagnosis was based upon!!! So!....

........I have thrown the drugs away, no going back now!!

I just wondered if anyone else had the insight to do this and survive without outraged peers telling them they would simply have a heart attack and die?


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20 Replies

we are not all the same, I'm lacking a thyroid not lacking insight. You may be able to alter a tsh cutting food groups others are not so fortunate and depend on the hormones supplied by the NHS to stay alive, like myself.

I wish you all the best and please be polite and respectful to others.

Jodypody in reply to carly77

I don't think she was being disrespectful, just sounds like she's exasperated to be fair.

lola1956 in reply to carly77

I don't think she said anything disrespectful she's just like many others ..fed up of lazy doctors not doing there job properly

Hidden in reply to carly77

have i been unrespectful?

lola1956 in reply to Hidden


MaxiFrustrated in reply to Hidden

Not at all. Read your post twice and can't see how anyone could say you are being disrespectful. You're frustrated, like so many of us. I'm borderline too and greatly appreciated your post.

I was classed as borderline but had a lot of symptoms so doc finally agreed to trial me on levo. I persisted in getting a T3 test and that showed below range so I wasn't borderline at all. Fast forward now to 6 months later and I've persuaded them to switch me to NDT. I feel normal now. I have also changed my diet fairly radically and removed all carbohydrates with the exception of fruit and veg. Occasionally gluten free oat cakes ( a couple) so I'm forced to eat all natural foods. Think meat, fish, veg, fruit, seeds, nuts and full fat dairy. I'm basing this on the fact that hypothyroid sufferers don't process carbs very well. Hence the stomach issues. My digestive system is now silent (no trumping here I'm a lady) and efficient processing (I don't get bunged up) You could try this and then get another blood test. Have you had children?

Hidden in reply to Jodypody

yes I've had kids two of them :-) i am menopausal which i understand can really affect the TSH readings and seeing as that is what the doctors base their decision to medicate on its kind of scary that they are so uneducated!

I probably needed a supplement or two or change in diet. yes I've cut out all carbs and I'm juicing!! :-)

I attend the gym three times a week and am very active. it was the joint pain and fatigue that got me down. I also had constipation and was cold a lot of the time.

Not once did doc ask about stress!! STRESS a major contributor to low TSH readings! stress in the body causes cortisone which affects the adrenals and pituitary gland...the thyroid is NOT an isolated part of the body. they didn't explain either that taking levothyroxine can literally kill what was left of your functioning thyroid!...NICE! thank god i got off it less than three months in!

I think there are thousands of people out there being misdiagnosed due to the incompetence and lack of educated doctors who are too willing to prescribe to make patients go away.....if that is deemed disrespectful I'm not sorry.

I am sorry for those who need synthetics in order to function, but i believe that my particular case can be controlled through diet alone.

Their horrendous diagnosis and treatment of me recently runs from HRT which was a disaster (too much estrogen!...yes which can lead to LOW TSH READINGS!!!!) to Citalopram...which they have almost begged me to go back on! i also read that there are certain things in modern SSRIs which can cause the thyroid to fail!...no wonder my TSH levels were low!

oh yes Im trained in addictions counselling, i wear the tea shirt and i can tell you now that Anti depressants ARE ADDICTIVE!......dont even get me started on that topic!..

The only winners here are the pharmaceutical companies.

This is day two of being drug free , the bloating has nearly disappeared! I'm going to the loo regularly and I'm not constipated. That is what is keeping me going to be honest...the fact that i actually feel BETTER! lol as for fatigue and feeling cold ill push through it and find myself another jumper! its got to be better than the way I've felt for the last 10 weeks.

cheers :-)

Jodypody in reply to Hidden

I agree that you've been at best mistreated. I wonder you were put off levo it isn't great but better than nothing. NDT being gold standard. You're right on diet it helps but it won't fix your thyroid completely. Hypothyroidism is at epidemic levels. In other words the damage is already done. There are lots of theories as to why. Ranging from GMO foods (wheat especially) chemicals in our food and even fluoride in our water. Couple to that stress and childbirth and the contraceptive pill. The cold and fatigue is because of poor metabolism which in turn is a thyroid related issue. That is where you need T3 or NDT help. X

Clutter in reply to Hidden

Iamwell, Most people struggle to get a hypothyroid diagnosis and treatment. They are more likely to be offered anti-depresants than Levothyroxine. It's quite common to feel quite well/better for a few days after stopping Levothyroxine but it doesn't usually last.

It takes up to 8 days for the last dose to wash out and around 8 weeks for every trace to leave your system. If you were correctly diagnosed and need the hormone you are quite likely to start feeling hypothyroid in 7/8 days. If you do, either resume taking Levothyroxine or ask for recommendations where to buy NDT or Liothyronine (T3) and self medicate if you feel that Levothyroxine didn't suit.

Hidden in reply to Clutter

cheers clutter but I'm going to put up with the symptoms prior to the diagnosis.....it beats feeling worse than i did before :-) was just concerned that i might keel over with heart attack as some others have suggested! ;-)

Clutter in reply to Hidden

Iamwell, You won't keel over. Untreated subclinical hypothyroidism does have health implications including heart issues though.

You may have felt unwell because your dose was increased so quickly. Dose increases are usually 25mcg increments every 6-8 weeks.

I am well, do you think you could be lactose intolerant and that there was lactose in the tablets which is the cause of the problems? (I had something similar to what you describe with HRT in pill form, all HRT pills contain lactose I gather). It could explain your symptoms and them getting worse with larger doses. I am surprised you weren't called in for blood tests and they just kept on upping the dose.


I think i would rather die than go through what I've been through under the GP practice in the last 6 months. As far as I'm concerned they are only fit to prescribe anti biotics...mind you, historically i had to reach pneumonia and crisis point after several doses of different antibiotics before a locum prescribed what he described the 'bleach of all antibiotics'' to cure what was a simple chest infection!

I have simply lost all faith in doctors and as far as I'm concerned they are very high paid guessers armed with their mimms directories they prescribe doses of drugs to fit the symptoms without even getting a full low down from the patient!.

I have reached my own conclusion that my body is a pretty intelligent thing, it will sort itself out with the right nutrients, exercise and rest. I need to be very mindful of what i eat from now on as well as staying as stress free as possible. I am going through the change and therefore a lot of different things will be happening.

I do not need doctors to mess me up anymore.....im simply done with them.

If i keel over with a heart problem i will re assess but to be honest....i think with a stringent mindful approach towards a healthy lifestyle ill be ok :-)

thanks for your input guys....i can't say I've not been worried because i have. I am scared that i have to do this alone but I'm more terrified of being drugged by doctors who do not really know what they're doing.

cheers :-)

lola1956 in reply to Hidden

I'm sending you big hugs as your very determined to do it your way xx

No, not lab rats. Using people as lab rats implies that you care about the out-come. They Don't care.

But you're right, they have no idea how to treat thyroid. However, to have been put on thyroid hormone replacement (Levo, which isn't a drug, it's a thyroid hormone) you must have had a a pretty high TSH! They Don't dish these things out lightly! And telling people they are 'border-line' is a nonsense. It doesn't mean anything. It's like telling someone they are 'border-line' pregnant. Not possible. Either you are or you aren't. And, as I said, you must have been because they don't hand out levo lightly. The misdiagnoses usually go the other way, people being diagnosed with depression or Fibromyalgia when in actual fact, they are hypo.

The pity is, you didn't get a copy of your results Rule number one is : always ask for a copy of your lab results for any blood test you might have. You need to take charge of your health and understand these things, keep a record and know how you are progressing - or degressing. And also know if they did the right tests. They Don't always. Nor do they always know how to interprete them if they do do them.

And your doctors obviously know nothing about thyroid, because giving people increases of 50 mcg is just not on. It stresses the body and makes you feel worse.

And maybe synthetic T4 is just not for you. It wasn't for me. I got worse and worse and put on loads of weight when I was first put on levo. Through trial and error, I found that what I need is T3 only - synthetic, but not much I can do about that, and it works, so, hey, what am I complaining about!

My advice you would be to start again. Get tested - privately perhaps - but get the right tests : TSH, FT4, FT3, anti-TPO, anti-Tg, vit D, vit B12, iron, ferritin, and folate. The last five all need to be optimal for you to be able to use the levo you're taking.

Changing your diet could be a good thing - as long as you Don't cut out salt and fat! But it won't be enough if your thyroid gland is failing for any reason. Or if it is damaged. You need to replace the hormone it can no-longer make by taking one of the different forms of thyroid hormone replacement.

So, if you care about your health, get tested. :)

Hugs, Grey

Hidden in reply to greygoose

Hi Grey,

I have been tested, and both times it came back 'borderline' the last test i had said i was 'normal' and the doctor said that i should stay on the dose 150mcg.....thing is i felt so il and bloatedl!! i told him that the rapid weight gain had got me down and wasn't normal...some days i was on 600 calls a day and i work full time and attend the gym!! i was feeling sick and tired....he told me i needed antidepressants as i had a 'low mood'...WTF???!!! he also said that the weight gain had absolutely nothing to do with the medications......WTF?! when i asked him what was responsible for the weight gain he said i can't answer that....WTF?

The doctors are literally clueless......not once did they say hey....before we pop you onto meds lets have a look at your diet, lets look at the whole picture and find out whats happening with you...I even ASKED one of the doctors (ha ha ha no didn't speak to the same one twice!)if there was soemthgn i could do diet wise....NO she laughed at me!!!!! over the telephone i was prescribed a drug i knew little about (neither did she) i was told i would have to take them for the rest of my life!!! WTAF?!!!!...i put the phone down feeling utterly bomb shelled!...WTF do you mean be on them for the rest of my life? WHY?? iwas frightened and so did my own research.....all the time taking the hideous medication.....seems to me that there are literally millions of people on doses of god knows what which is making them feel worse!.....all with the attitude that this is what life has dealt them......and theres nothing they can do.....further research tells me that diet is CRUCIAL to healthy thyroid...and that one of our main problems is polyunsaturated fats! I have also heard that thyroid issues CAN AND HAVE been reversed with an adherence to a diet which supports rather than hinders the thyroid.

Yes I'm scared yes I'm concerned that I've turned my back on the medical profession regarding this issue...BUT as I've said before I'm terrified of what THEY are prescribing me....for all i know the TSH may have had an abnormal or borderline reading due to the last lot of medications they had f****d me about with ...the HRT which made me really ill.......estrogen WILL make a difference to a TSH reading!.....did i actually need this crap they prescribed?

I DID ask for T3 test but was refused and told to stick with the levothyroxine.

I have quit all of the drugs they have given me in the last 6 months. antidepressants,HRT and finally levothyroxine......i have to try the diet thing and allow my body to rid itself of all the toxins they have prescribed.. i am still suffering withdrawal from the antidepressants but they are getting less and less. I've already lost weight and am less bloated since quitting the levothyroxine.........ill stick with it :-)....I know in my heart I'm doing the right thing....

Grey wish you all the best :-)

greygoose in reply to Hidden

Fine. :)

Like yourself I was diagnosed as borderline hypo some 8 years ago and was put on Levo. I have never felt good on it so 4 weeks ago I asked my doctor if I could come off of it. Surprisingly she agreed! I am 3 days away from 4 weeks and I feel the biggest change is my mood. I would fly of the handle at the slightest thing and now I feel quite mellow. I have a little more energy, which is good as I had none on Levo, but as yet I have not lost any weight around my abdomen which is the one place where all the extra weight has gone since taking this drug. I also feel as though my stomach is extended, which is not a great feeling, but the plusses of being off this drug so far outweigh anything else!

helvellaAdministrator in reply to Crazy_Diamond

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