Unhappy Levothyroxine user

Unhappy Levothyroxine user

i am seriously thinking about coming off my Levothyroxine as I have been fighting a loosing battle with my GP as they tell me my high cholesterol and weight gain is not caused by my thyroid as I'm within the normal range TSH 0.50 T4 17.3. They will not test me for free T3 and Free T4 ! I have now ordered NTS and going to try this instead as at least I will get some T3 as I think I am not converting the T4. I am also taking supplements to help my conversion but still I'm not loosing weight😩 I feel like since I hit menopause 10 years ago things have gotten worse which makes me wonder if I have  estrogen dominance and if so how d I sort this out as I never took HRT as I didn't want to take more man made hormones !! Any advice would be great 

31 Replies

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  • Hi carriebaby, sorry to see problems you are having. I did experience similiar, was on birth control pills for 12 years, till I was 35 and sterilised. What Levo dosage are you on?  

    if memory is correct now - once off, within 10 yrs I'd started or was going through menopause. Put on weight, but then I'd done that on and off throughout my life at almost 7 yr intervals. I wasn't dx'd Hypothyroid till I was 53  after a blood test! Levo isn't a weight loss pill though and on its own, as I found made no  difference for me either. have you thought of having a private blood test for the Free T3/4? 

    One or other of admins I'm sure will be here replying to you soon, with better knowledge than I have re the tests and results. I wish you well for the future, you'll get there :-) 

    PS for other and and different health reasons, yes I did lose weight. 

  • Thanks for your advice I really need to pay for private tests and then publish them on here to see if I can get an answer as my GP won't help that I know for sure!!

  • Hi Carriebaby 

    You have said your T4 is 17.3 but they will not test your FT4. I think you will find that 17.3 is your FT4. Have you got your results with reference ranges so members can get a clearer picture?

    If your GP won't do all the tests you can get them done privately through Blue Horizon, their Thyroid plus Ten is a good one bluehorizonmedicals.co.uk/e... and you should be able to get a discount of £10 if you go through ThyroidUK, details will be on their main website under Private Testing.

    Besides THS, FT4 and FT3, that test will tell you if you have antibodies and Hashimoto's if you don't already know. Also whether ferritin, folate and B12 are optimal which is necessary for thyroid hormones to work properly. You can get Vit D done through City Assays for £28 which is also important to know.

    Once you get FT4 and FT3 results, you will see if you are converting well enough. 

    What is NTS?

    As far as oestrogen dominance is concerned, you can get your sex hormones tested to find out. I've recently had the Menopause Plus test done through Genova and it tested all sex hormones, adrenals, melatonin, etc. Pricey but very informative. I thought I was oestrogen dominant because of breast cysts but it turns out I have virtually no sex hormones at all. I am working with a private hormone specialist to try and sort this out.

  • Sorry I have probably called natural thyroxine  by the wrong name !! I think as you say I should pay to get a true picture of my FT4 and FT3 as well as my adrenals and sex hormones as I take all the needed vitamin and mineral supplements to help my conversion so I'm guessing something else is causing the high chlorestrol and weight gain as I just can't seem to loose even a pound regardless of diet and exercise !! Frustrating to say the least. I'm now 58 and through the menopause so I'm guessing this hasn't helped 

  • Also I meant to ask you what does FT4 mean? 

  • Free T4. The thyroid tests, if they're all done, consist of TSH, Free T4 and Free T3. Occasionally Total T4 but I'm a bit clueless about that.

  • Total T4 is both forms of T4 - bound and unbound (free). It doesn't give much useful information because you Don't know how much there is of each.

    Carriebaby, what exactly are 'all the needed vitamin and mineral supplements to help my conversion', and how much of each are you taking?

  • I'm taking a malti vitamin which has all the vitamins including all the B ones plus selenium to help convert 

  • Yes, well, I doubt that's sufficiant. multi-vits may contain everything, but not enough of anything to treat a true deficiency. Plus there are things that you Don't want. Plus they shouldn't all be taken together like that.

    It really is better to get tested and supplement the different deficiencies individually. That way, you know how much to take. And you might not need some things, anyway. If you're really serious about supporting your conversion, you'll get tested.  

  • Carriebaby Ah, natural dessicated thyroid, I should have realised 😊, yes that does contain T4 and T3.

    Possibly, once thyroid hormone is working correctly, the weight and cholesterol problems should start to resolve.

    I'm the cautious type and want to know if I am in need of something rather than just guessing, too wary of taking the wrong thing and doing harm so I would always advocate testing, either through your GP or privately. I was also on the verge of starting to supplement with iodine as my breast problem pointed to this but when I tested I had plenty so I could have caused myself real problems if I'd started taking it.

  • Carrie, Has your doctor suggested or tested for Type 2 Diabetes.? Mine did result came back borderline so he decided to put me on Metformin - v bad move in my case, it counter acted against Levothyroxine. 

    V long and complicated sorry, but I suggest you check out via a UK based,  dugs interactions,  website, another name I nowI forget, but   admins will know if it's not on the main Thyroid UK website page. you can look up names of whatever pharma made meds you take, and can I think check for individual reactions or if several taken, what the combined effects may be. Sambs 

  • Diet and exercise are useless if you're not optimally medicated. High Cholesterol and weight gain are clinical symptoms. Cholesterol usually reduces with optimum thyroid hormones and if weight doesn't drop it will with diet and exercise to optimum (not overdoing it).

    Doctors usually prescribe statins for cholesterol but it is also a clinical symptom of hypo.

    As seasidesusie says, if you can get the ranges post them.

    It's NDT (natural dessicated thyroid hormones). It's all new and a big learning curve if we want to recover our health despite the BTA guidelines.

  • My GP didn't put me on statins but to be honest I wouldn't take them as I truly believe I am not being treated properly as T4 has to convert to T3 which doesn't seem to be happening as I am still experiencing hyperthyroid Simptoms  I have a healthy diet take supplements and walk everywhere and no weight loss 

  • I couldn't remember the name of the private lab, SS so I'm pleased you did :-

    Also re sex hormone - my sex drive was always low! I presume there is a connection between the 2!  It's no fun going just through the motions as it were :-) 

  • Oh SAMBS I can so relate to that, I've often thought it was a miracle I had a second child, my poor late hubby 😢. When I think back, 40+ years of being hypo, many times lack of libido I mentioned, a counsellor, even hypnotherapy I went through. All the time if only the doctors had thought to do a sex hormone test 😠. They just can't think outside the box and never even try to join the dots. I try not to think of all the things over the years this cruddy disease has contributed to, I would get too upset 😢.

  • Me too, we saw a sex therapist on Dr's recommendation! Donkeys years before I was diagnosed. So me too, relating to some of your story! If only if been diagnosed years earlier I mightn't have walked out on 45 year marriage! 

  • Where do you get your T3 from ??? 

  • Could you send me the info as well. I am having no luck with my doctors.  Thank you.  

  • Thank you everyone you have certainly given me good info and think I will get private bloods done to see what is really going on inside my body!! I have already had a test for diabetes but my result was 5 which is normal so I'm guessing I will still try the natural thyroxin as I would rather take that rather than a synthetic version 

  • It's not all that 'natural', you know. If you want truly natural hormone, you'll have to bite the gland out of a pig. What you get in pills has been massively processed, and fillers added to make it into a pill. And, it doesn't suit everyone. What's more, there are several different brand names, and not all of them will suit you. So, you might have to try several before you find the right one.

    Also, for it to be able to work, your vit D, vit B12, folate and ferritin all have to be optimal, not just in-range. And, you have to take a high enough dose for long enough, to know if it works or not.

    Not trying to put you off, but Don't want you to run away with the idea that it's a miracle pill that will solve all ills. What you need is the right pill for you. :) 

  • Well fair enough you could well be correct but the alternative is big parmasutical companies synthetic crap which clearly doesn't work for me 

  • Look, we're on the same side. lol But you know, a lot of people do very well on that synthetic crap. You Don't. OK But be aware of the possibility that NDT might not work for you, either. So, the best thing to do is prepare for it by getting your nutrition levels optimal. Otherwise, as I said,nothing will work.

  • I eat a very good healthy diet and only take the muti vitamins as its especially for women over 50 containing all the necessary spectrums I exercise also and know that the meds prescribed are really not doing it for me I'm at my wits end as I still feel under active ! My GP is not interested and says my TSH is within range ! How would she really know as she doesn't check wether I'm converting it into T3 😩 I will try the NTD and if this doesn't work I will try T3. And as you suggested I will get my bloods looked at privately 

  • Ok, but remember, you are not what you eat, you are what you absorb. And hypos usually have low stomach acid, so absorbing is difficult. That's why we get deficiencies.

    A multivitamin only gives you more or less the RDA - which is rather conservative, anyway. If you have a deficiency, taking a multi-vit is rather like trying to fill a bucket with a hole in it - as fast as you pour it in, it falls out and you never manage to top up the bucket. You have to be a bit more scientific about supplementation than just popping a multi-vit.

    Your doctor knows nothing about hormones or nutrition, she's totally out of her depth. That's why she seems disinterested. In med school, all she was taught was that you do a TSH test, and if it's out of range, you give Levo til it's in range again. And that's all she's capable of doing. She believes that everyone converts perfectly - it wouldn't occur to her that you can't convert - and that testing T3 is unimportant. And giving T3 is dangerous! And she's been taught  that vitamins and minerals are irrelevant.

    That's why we're all here, to learn more than the doctors ever learn. And to make ourselves well. But, there are certain basics that need to be observed. Like testing nutrients. :)

  • Oh, and exercising uses up your T3. So, if you're not converting well, you might want to give the exercise a miss. Just gentl walking so you Don't rust up! :)

    And, if you're only taking 50 mcg, you Don't have very much to convert, do you. 50 is a starting dose. It should be increased by 25 mcg after six weeks.

  • I guess you make a lot of sense as I am new to finding out all this info but I'm only walking my 3 dogs so not doing excessive exercise ! I'm on 100 mg a day I was on 125 but they said I was over so reduced it. Where can I get my vit & minerals tested as I doubt my GP would give me that test 

  • That would be 100 mcg, not mg. Did they give you the result when they said you were over-replaced? N° 1 rule in all this is to always, always get a copy of your results every time you have a blood test. It's your legal right to have one. You need to know exactly what was tested and what the result was. Your doctor is just giving you his opinion. He could very well be wrong.

    So, even 100 mcg isn't very much. I doubt you were over-replaced as you still had symptoms. But if they were only testing/looking at the TSH, and it was low, reducing your Levo was just a knee-jerk reaction. Not a considered medical decision.

    Ask your doctor first for the tests. That will give him an inkling that you are no-longer going to be that good, passive patient that he likes you to be, but that you are sitting up and taking an interest in your health. You'd be amazed how that changes attitudes.

    If he won't agree, have a look on the main page of TUK. It talks about private tests, there, with links etc. I have no first hand knowledge of that, as I live in France. :)     

  • My GP took me off the levo after one blood test showed high levels of thyroid

    To keep this short, I feel lousy, and look terrible. You might want to ask your doctor about adjusting your dosage. Stopping the levo all at once is a really bad idea.

    About the HRT, the one most doctors prescribe is Premarin; it's a "conjugated estrogen" extracted from the urine of pregnant mares. Seriously! My OB/GYN won't use it. She prescribes Vagifem, it's a small suppository you insert once a week and it's made from yams. 

  • And it's terribly, terribly cruel to horses!

    You're right, stopping it all in one go is a very bad idea. If you do that, you will probably feel great for a couple of weeks, and then crash. And you will find out just how much it has been doing for you that you didn't realise... 

  • I stopped takin in Levothyroxine nearly 5 years ago for 2 months because my chlorestrol was very high as well as my liver out of kilter surprise surprise my liver went back to normal and my chlorestol went into the normal range !! I know someone who stopped taking the T4 and started taking natural thyroxine and she hasn't looked back !! 

  • There's no such thing as natural thyroxine. NDT is T4 and T3. They haven't yet found a way to isolate the different hormones from the pig's gland.

    I agree that Levo doesn't suit everyone. It didn't suit me. But, then, neither did NDT. I'm best on T3 only. But you do need something. And it's much better to stay on the Levo until you get your hands on some NDT.

    Believe me, I'm not defending levo! I would support your desire to try NDT all the way. But just coming off Levo, just like that, is not the best way to go about it.  

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