Alternatives to Levothryroxine, anyone? - Thyroid UK

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Alternatives to Levothryroxine, anyone?

11 Replies

Hello all - I am new to this thread. I saw a doctor because I was feeling different than my usual self and was having strange "palpitations". After getting my heart checked out, it was found to be fit. Doctor then ran thyroid test and my TSH came in at 4.51. Doctor requested retest in 6 months. In the interim, I took a natural remedy called Thyroid Compete, hoping to better things. Well, to my unpleasant surprise, my TSH is now 5.43 so the doctor put me on 50 mcg Levothyroxine. The confusion is this: I don't get tire, I have not gained any weight (in fact, I have lost 5 pounds without trying), no muscle pain, no weakness, memory is sharp, etc. I can't dispute the blood test, but, from what I have read of side effects of medication plus the thought of taking this stuff for life, and in the absence of so many symptoms, I am wondering if there is an alternative way to manage this. Has anyone had success with alternative solutions? Medication side effects seems almost worse than symptoms.

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11 Replies
TSH110 profile image
TSH110

You need to know if you have thyroid antibodies, if you do you have autoimmune thyroiditis which is progressive until the antibodies destroy your thyroid completely. You woukd need thyroid replacement hormones. 90% of cases is this type so by the law of averages this is the most likely cause. Ask doc for full panel blood test including antibodies, or get a private blood test. . Most people here feel terrible but doc will not treat them quite the opposite to you! You are lucky to have a doc who is proactive. Your heart problems will be caused by lack of or variations in thyroid hormone as your thyroid fails. The heart is very sensitive to thyroid hormones. It is good to keep the levels up to avoid this. I suffered greatly with this problem but the heart people never suggested it might be hypothyroidism. I have problems even now so i’d Strongly recommend you take action now to stop any further complications. Levothyroxine is well tolerated and works for most people - the majority on here are the unfortunates who have persistent problems and are seeking support so we are not truly representative.

Google Isabella Wentz who is a pharmacist with some interesting advice you might find helpful.

You can loose weight with it, it is unusual but not unheard of.

Going gluten free can help.

Treepie profile image
Treepie

You were lucky to be offered levo before a TSH of 10 . A friend with no symptoms was diagnosed over 20 years ago and put on levo and not had problems.

eeng profile image
eeng

You don't have to take the medication if you really feel you don't need it, but have a read of the symptoms list online - I think there's one on this website somewhere, otherwise Wikipedia. You will be surprised just how many there are. Keep the medication because one day you will almost certainly need it. One advantage of being on Levothyroxine is that all your prescriptions (not just Levo) will be free from now on assuming you are in the UK. Weight loss can be a symptom of hypothyroidism - yes most people gain weight, but there are some who lose it. I had a TSH of 7 before being diagnosed and had very few symptoms at the time, just a general feeling of not being quite right, constipation and hair loss. However since then I have been undermedicated and really knew about it. I wouldn't be without the Levothyroxine.

whispers profile image
whispers

Your increased level indicate your thyroid is struggling, it would be helpful if you could post all results with ranges ( presuming they tested more than tsh) did you tell your doctor you were taking the supplement before your last test?

in reply to whispers

My first TSH was 4.51 in July 2017 (range is 0.35 - 4.00 mcIU/mL) - My second is 5.43.

My first T4 FREE 0.8 (range is 0.8 - 1.5 ng/dL) - My second is .07. No I did not tell my doctor I was taking supplements. Most doctors don't believe in such and maybe I screwed up, but failed to consult.

Thyroid hormone replacement is usually well tolerated as it only replaces hormones your body is no longer able to produce...side effects are most likely due to being over- or under medicated. The goal is to become symptom-free, and we achieve that in different ways. Some do fine on T4 only, others need to add T3 to the mix (either synthetic or natural desiccated thyroid), while some take T3 only.

In Belgium, which is where I have been treated for hypothyroidism (autoimmune, Hashimoto's disease), a TSH above range (usually 4 or 4.5) is considered hypothyroid and requiring treatment, and proactive doctors will treat patents with a TSH above 2 (as that signals a failing thyroid). So it seems you were lucky to have a doctor willing to take action before your health took a turn for the worse.

I agree with others, you should have antibody levels tested (anti-TPO, anti-thyroglobuline) to see if indeed you suffer from autoimmune hypothyroidism. If that is the case, your thyroid function won't go back to normal and you'll need lifelong thyroid hormone replacement. However, no need to worry about it, as the majority of patients get well and rid themselves of all symptoms once they find the optimal treatment for them.

Best of luck!

Anna

TSH110 profile image
TSH110 in reply to

Belgium sounds much better than uk for quick treatment - we are in the thyroid disorder dark ages here - just left to suffer unnecessarily in far too many cases. TSH of 10 before treatment is criminal.

alangardner profile image
alangardner

from what i have learned through this forum i would suggest that you need to have ALL tests done -- tsh,t3,t4, ferretin ,follate ,vitd3, vitb12 - together on the same blood test to show a full picture of your situation [ as all are interactive with each other and also have an effect on each other --- one test does not always show the true picture --- levo works for most , but not all , so if it dosent work for you you need to be aware of alternative treatments as you go along . and i have found that this forum is by far the best way to gain the information that you may need independantly . always remember that when posting results you give the ranges as well as the results as different labs work to different systems , and i am sure you will gain proper advise and knowledge ........hope that this helps you .....alan x

Clutter profile image
Clutter

Dusty77,

There are 4 makes of Levothyroxine tablet in the UK so if one doesn't suit ask your pharmacist to dispense another as different makes suit different people. There is no other thyroid replacement available on NHS but NDT and T3 are available on private prescription.

Lifestyle and dietary changes won't replace low thyroid.

silverfox7 profile image
silverfox7

It certainly can't help if we are left to get and feel really poorly before given medication as it seems amountain to climb from the start. But many get well on Levo and many on here who say it's not working for them aren't been monitored properly and often aren't on enough medication or aren't aware of the do's and donts. But it's needs to. be worked at and taking Levo is the only method where you can tell if you are converting the inactive T4 to the active T3. That's another common problem as thyroid sufferers leach vitamins etc which we are often short of and those need to be optimal to enable our thyroid to work well and in turn make us feel well.

At one time is was thought that we should take a little pill and all will be fine but it's not that simple though many doctors think if you start medication then that's it, you will get well-wrong and the same applies to all the alternative treatments as well so we owe it to our body to look, listen and learn plus if we are aware of the facts to improve us we can listen to our bodies and realise when something isn't quite right and by being able to do that well it's a huge step forward. Don't just give up because nothing seems to work, ask questions and find out why or how to manage it better. We are all different, we can react differently, we can be very sensitive to change and we can start with differing symptoms but we can help but don't throw in the towel without giving Levo a good go as trust me the alternatives can be more problematical. Yes you will hear stories that something different worked for them but not many shouting how wonderful Levo is but anyone feeling and knowing it is working for them are sitting at home enjoying life and all it has to offer and that is great but they aren't coming on here telling us their success story. Ones on here are struggling, probably through no fault of their own, they are new and their doctor isn't sure how to treat them or like me they are thankful for the help this forum has given them and want to give something back to help and encourage others. Ok I'm on NDT but I started out on NDT and liked it until a strike stopped my medication so I went over to Levo which again worked for me for probably 25 years. But as we age other things crop up so I wanted to go back to NDT but before doing that I worked on getting all my results better and corrected what had gone wrong and I'm pleased to say that two broken bones and cancer treatment I'm feeling good but I'm still working on keeping well. We need to keep up with testing, learning about new things being suggested so being pro active. If we sit back and think we have cracked it we are just the same as the doctor who thinks one little pill cures all. We never stop learning and never should we.

Winter75 profile image
Winter75

Dusty do you know what are the four brands of lever throwing my go said there is, only one brand winter75

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