When I was newly diagnosed 3 months ago, this forum, while a mine of information, was also a very scary place to be. By its very nature many or most of the people on here have complications in their thyroid disease, because people who get better (fairly) quickly and smoothly don't post much, and many probably never even find it. Here there are many stories of poor medical care, reliance on incomplete testing, failure to improve on the normal medication ( levothyroxine), but three months ago I wanted a story of someone who got better, to give me hope that it's possible. So now, here's my story:
I was diagnosed with what I now know to be horrendous blood results -
TSH 240 (0.55-4.78)
Free T4 2.1 (11.5-22.7)
Free T3 1.5 (3.5-6.5)
I actually had all the symptoms, but they were well disguised by my age and menopause, along with 2 other autoimmune diseases, alopecia (since I was 11) and asthma. Now I can see how ill I was, but at the time everything seemed explained by something else. I had chronic indigestion which sent me to the doctor - thankfully he sent me for a blood test which came back as above. Here in Slovenia I was sent immediately to the endo, who specialises in thyroid, who told me I must start with 25mcg fr 2 weeks, then 50 for two weeks and then 75 till my next appointment - my levels were so bad it would be dangerous to give it any faster.
The first few weeks were scary indeed. As my body slowly came back from the dead I realised how close to collapse I was. NOTHING was working properly, unsurprisingly. I was afraid to go to sleep in case I didn't wake up, worried that I'd done irreparable damage to my heart or liver. I was full of strange aches and pains, tingles and twinges, as everything gradually woke up. On day 8, I moved back into my feet, and was entranced at feeling alive again, warm to the edges. After each increase in dose it took about a week to see an improvement, but slowly, slowly I got better. After about 2 months I went back to the endo and I was already feeling a million times better, but still getting tired with a 'thryoxic' headache I had learned to recognise. Although she refused to consider anything about nutrition (sigh - like so many on here!) she did listen to my symptoms and put my dose up to 100mcg without waiting for the blood test, which was
TSH 5.095 (0.55-4.78)
Free T4 17 (11.5-22.7)
Free T3 4.86 (3.5-6.5)
Three weeks later I feel great! On Friday I cycled 80km, yesterday 42km. I have a sense of well-being I haven't had for YEARS! Of course there is still a way to go - my hair is still very thin and patchy, my skin still somewhat dry, I still can't lose weight. But I am hopeful of further improvement as my body adjusts and recovers.
I am so grateful for my life back! Stay positive - it does help!
Written by
RustyMary
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Yes, it is good to hear good news. I hope that it continues.
Please do stay here and try to encourage those who might have given up hope.
For everyone there IS a solution, even though it might not always be the same one. It's easy to assume that no-one does well on Levo, and those who do well on Levo can assume that others should do well on Levo. Your post is a reminder that we really are all different!
Thank you for such a lovely positive post.
Marie XX
Lovely to read your post. I am so glad you are feeling so much better and feel sure you will go from strength to strength.
What is so good is that your Doc did tests when you had gone with a digestive problem. Most Docs would probably have sent you away with a prescription for a pill. Pleased to hear about your recovery - and long may it last....keep on pedalling...
I live in Crete and also have good medical treatment too. I dabble in the private sector which is very affordable and also the State system.... no complaints
why you say about levythiroxin it often does? when you talking about yourself only sure it can work, but often is a doctor statement this is what my doc told me that i am an outlier, while i think i am not.....also your results TSH 100 maybe show you were cought at very early stage...and the later one starts the therapy the less potent it is....
i am very happy for you...but its too early to tell first 3 months i was feeling the same way .......i did not run that long distance.....but i did feel big change in my running, i was beating all records :).....
1.5 years later i was at the beginning
you seem to be converting your t4 good, which is not that common
Ivy, I see you haven't been on the forum that long so maybe you have missed the point a bit. Levothyroxine tends to be seen as a bad thing here because many people have found it doesn't work for them. When I was first diagnosed, I wanted to read about someone for whom it HAD worked. I felt so bad at the beginning I didn't think I would ever be getting on my bike again, never mind cycling 80km. This post was intended both as a celebration and a focus of hope for others, and as such, was positive, not negative. I know I am at the beginning of my thyroid journey and my good results may not last, but frankly, I don't need reminding of that at the moment.
If you read my post again, you will see that although a TSH of 100 would be very bad, mine was actually 240 - hardly an early catch. Maybe I am unusual, but I have since found out that 4 people I have known for years have actually been hypothyroid and taking levo for decades, and leading perfectly normal lives, so I am by no means alone.
PS Putting smilies in a negative post makes it worse, not better.
The part in your header: it often does "absolutely says nothing, and can not be concluded from your experience,all the rest is perfectly fine and hence my recation,
Does it mean then that my case is the rare one? Or an outlier?
Well i absolutely can not agree on that!
From Dr. ray peat :
When thyroxine was tested in healthy young male medical students, it seemed to function "just like the thyroid hormone," but in people who are seriously hypothyroid, it can suppress their oxidative metabolism even more. It's a very common, but very serious, mistake to call thyroxine "the thyroid hormone."
This is my experience too, and i used it 3 years! Ditto
I know several people who are well on levothyroxine. Unfortunately I am not one of them but it is always good to hear a success story!
We are all very different and it is important for us to remember that. Where thyroxine may not work for one person, it may make another person feel very well.
I hope your new found good health continues
Carolyn x
This is great news. I also have become very well, firstly on levo and now with a small addition of T3. I feel like I have been given a second life! Enjoy yours!
No actually. Reading your answers would make someone newly diagnosed very nervous to take it. It might not work for you but it does for others so your flippant remarks aren't very helpful.
Alison, I have already reported this person's post, which I thought was incredibly inappropriate. No-one has the right to make comments about anyone else's health, never mind their mother's (!) This thread was intended to be positive - there are plenty of threads discussing the disadvantages of levo. But for me, right now, it is a wonder drug that has quite literally not only saved my life but also brought me back to radiant vitality. In my great joy at that, I do not need to be told that it might not be real or might not last - these kind of comments are enough to drive me away from this forum altogether. It is as wrong to say levo never works as it is to say it always does.
One thing I didn't mention in my original post is that, recognising that it was no use making judgements about any of my symptoms until my blood levels improved, the only other thing I did was stay very positive. I made positive affirmations whenever I thought of it, including: 'I am making a complete recovery', 'Levothyroxine suits me really well', 'All my systems are working normally'. If you are new to this, it is important to keep them in the present tense and say them out loud with complete conviction. I personally believe it makes a real, physical difference - but if that is a step too far for you, it is still definitely good for your head and your mood, and gives hope where all may seem lost.
RustyMary thank you for posting your story. It will be a great inspiration to others. I was diagnosed with hypothyroidism 15 years ago and Levothyroxine has done me the world of good. I have loads more energy and my hair and nails are good again, no splitting nails and I ican wear nail polish again!
The argument about "cheap" might have some validity given the gross cost distortions of the UK market. In the USA, however, some brands of levothyroxine such as Synthroid can be more expensive than a similar "strength" of a desiccated thyroid product.
I don't feel the need to switch from levothyroxine to desiccated thyroid or liothyronine. Of course I might change my mind, but for now feel that at least my German levothyroxine is doing what I need.
My levothyroxine is German too, and as I said above, as far as I'm concerned at the moment it's a wonder drug. I find the 'untested' comment pretty strange too, given that I know 2 people who have been well on it for over 30 years. How tested do you want? That's certainly very much more tested than, say, GMO foods...
I take the "untested" comment as a reference to the failure of the pharmaceutical industry, doctors and researchers ever to perform proper trials to compare the newly available synthetic levothyroxine against the then-standard treatment of desiccated thyroid around 1955.
That was a disgrace to all concerned.
However, at the time, assay of desiccated thyroid was based on the crude "protein-bound iodine" testing. It might well have been the case that synthetic levothyroxine was better standardised and gave a more repeatable treatment regime.
We now have much better assay techniques available with both desiccated thyroid and synthetic products at least claiming potencies of great accuracy and excellent stability. Indeed, we are seeing that the synthetic products can struggle to be as stable in dose as the best desiccated thyroid products. Focus has shifted somewhat away from the pure potency issues towards things like dissolution and other aspects of delivery.
There are still many questions over the appropriateness of T4-only treatments but at least in some people they might be the best we can currently manage. For others, desiccated and/or synthetic liothyronine on their own, together or even combined with levothyroxine might be better.
Thank you for this wonderful, inspirational post. I'm delighted that you feel so much better. I started treatment just over two weeks ago - 100mcg levothyroxine (actavis). Already I feel, like you, that I am coming back to life. I was totally exhausted day in, day out. Everything was too much trouble. I had no interest in doing anything much beyond getting through the days. I ached all over, all the time. Whenever I tried to exercise - however gently - I'd be laid up for a week or so afterwards. I'm nearly 62 but have always looked and felt years younger - until maybe eight or nine years ago, when an indefinable malaise seemed to descend upon me. I'd had worrying symptoms long before that but they seemed to escalate without warning. Soon they'd taken me over.
Thanks to levothyroxine I feel ten years younger already. My chronic joint and muscle pain is less than half as debilitating as it was before. My permanent back-ache has also lessened. I feel alert and 'bright' and my worringly poor short-term memory is coming back. Even my gums - usually swollen and sore - are starting to see an improvement. The awful, all-encompassing exhaustion is slowly receding. Even my tinnitus is a wee bit milder! Best of all, I've started to lose some of the eight stones I'd gained over the past five/six years.
Long may this improvement last! I'm new to this forum and I've read lots of posts. I feel very bad for those who are not doing well on levo, and who fear that they will never feel better. All I can say is that, for now, I'm absolutely loving levothyroxine x
Hi Elven, oh I'm so glad - you are exactly the reason why I wrote this post! I'm pleased to report that 2 years on I am still very well indeed - I take 125mcg of levo now and am generally fine. I had a couple of ups and downs for sure - you will see if you track my later posts - and I would say it took a year to feel really OK again, but throughout most of that year I was improving.
When your thyroxine levels have settled back to normal I suggest you consider nutrition - I went on a gluten and dairy free diet after about 9 months which tipped the scales from feeling 90% well to 110% well. Also take the recommendations to get your vitamins and minerals checked. I posted recently about how I started feeling not great again, and found that I wasn't converting T4 to T3 very well - but it wasn't about levo, it was about selenium (Brazil nuts) and vitamin D.
There's so much to consider, but at the moment, after only 2 weeks, your body just needs to soak up the thyroxine and begin to recover. It's taken you years to get this ill so it will take time to get completely better. I sincerely hope that your recovery turns out as well as mine has. Sending you a virtual hug and all good wishes, Justi.
I didn't expect to see positive results this soon. I realise that the road ahead may be rocky but I've been feeling ill and weary for so long that any notable improvement is most welcome. I've been vegetarian for for 48 years - since age 14 - and was once vegan. I do eat cheese and eggs occasionally and have a tiny bit of single cream in decaff coffee (once or twice per day). I've been mostly avoiding sugar and white flour for years so it wouldn't take a lot of extra effort to give up dairy and gluten should this prove necessary. A great many ups and downs surely lie ahead! Even so finally being diagnosed with a treatable condition was a relief. My DIL is on 200mcg levo daily following a thyroidectomy (about ten years ago). She lost five stones and is still maintaining that loss. Alas she was recently diagnosed with Type II diabetes and is also on metformin.
It's so encouraging to read of successes on levothyroxine because large numbers of posters here have had or are having very poor results and are understandably miserable. I'm aware that good results can turn to bad at any time, and for no apparent reason.
Even so I'm feeling better, and I look forward eagerly to taking my tablet every day. Thanks again to those who have posted about good results as I was starting to become fearful.
I've been supplementing B12, D3, Selenium, Magnesium, Iron and most other vital goodies for many years. I make sure to leave at least four hours between taking levo and supplementing x
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