This might be a little premature to post but Clutter has asked me to speak up.
Long story short - I attended a few medical appointments and found a wonderful doctor - purely by fluke - that was willing to treat my borderline hypothyroid disorder. What's more, he gave me the power to control my first dose. Two weeks ago yesterday, I began 25mg of Levothyroxine. I had rapidly gained 5 more pounds in three weeks and it was showing no sign of stopping. My doctor encouraged me to double my dose to 50 if I felt I was not feeling better so after the first week, that is what I did.
I've been on the higher dose of Levo for a week. I could be a little stricter with myself but because I felt so low after gaining the extra 5lbs I thought starving myself was just useless. I had gained this weight and my only difference in diet was all bran for breakfast (20grams).
So I went away for a couple of days. I didn't binge but I didn't eat well. I had a little ice cream. I picked at things I shouldn't. I ate three restaurant meals.
I braced myself on the morning after my return , shut my eyes in dread to see the damage and...1lb gain. Seriously?!
I was delighted. By the next morning I had dropped a further pound. Then another within the next two days. I've got the 2.25lbs off from weds- sun. Tomorrow is back to the gym.
What's more, my digestive system seems to be back on track. My nails are growing. The mass bloating in my stomach has reduced. I stayed awake until 3:40am yesterday.
Things are gradual. They might all be psychological. They might all be coincidence but I'm hoping this is me on the right path.
If anyone has anymore insight into the weight issue in particular I'd love to hear it. Does this all sound like my Levo is working??
I hope you are all well and would love to hear from anyone onT4. When did your symptoms improve? Will my face ever stop being moon sized?!
I just wanted to post a little hope. When Levo works for desperate people they disappear without a trace forgetting lots of us are panicking about whether like is hopeless on t4.
From this side of the bridge right now tho - it seems like it might be starting to help.
Just maybe anyway!
Lots of love,
W x
Written by
Wlorenm
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I'm so glad t4 is working for you. Its great to hear from anyone who is feeling better from any meds. Even more congrats for getting yourself a fabulous doctor.
I use this site for information about the condition and to hear stories of many journeys. Many of us haven't had your success yet but its always encouraging when someone succeeds.
Keep up the hope. My friend is on the same journey and has found lots of success too. I think without this forum I never would have been diagnosed.
Do list anything or email when you're stuck.
All the best.
What a pleasing post to read. I am so happy for you that you found what seems like a good GP and that T4 is working for you. I don't take any medications currently, though I am prescribed Levo at 50mg, I felt so terrible on it, and kept passing out. So I just stopped it. But it is always good to hear it works for some, I hope it continues to work for you, with your weight and in feeling better.
Early diagnosis with a flexible treatment approach is how it should be for everyone. So happy for you that you have found the right mix ! Expect you will be deluged with requests by PM
Great to hear you are getting better (with such a sensible GP!), and also great that Clutter asked you to write about it. Levo has a really bad name on this forum and I've seen it referred as that terrible drug and poison among other things. For me it's a wonder drug which has saved my life and restored me to radiant vitality - see my recent thread below, though it was somewhat spoiled by several negative comments: healthunlocked.com/thyroidu......
Good luck, Wlorenm! Hope you continue to improve - please let us know!
This was a great reply - I see what you mean by the negativity. But listen I am do pleased you're doing well. Please send me a PM. Would love to hear from you!!!
Unfortunately the doctor I have is a locum. So you won't be able to find him and I'm in Northern Ireland.
He's been great though - he rang a lot of endos to ask for advice, he read my list of symptoms AND kept it with him to make enquiries.
He encouraged me - he said he was impressed with the amount if had researched and how I didn't ask for treatment - I merely told him how bad it had got.
He's worried about my high blood pressure and he's contacted an ENT for further examinations on other symptoms to be totally sure.
I'm not saying it was easy. It took a while to find him. I'm notoriously impatient and when I get something in my head and between my teeth I don't let it go. So altogether my diagnosis, referral and my beginning treatment was 3 weeks. I've been lucky. My endo wasn't helpful at all. But I owe this GP absolutely everything.
Good luck with everything. Please stay in touch. I'll be sticking around a while!
I started Levo 3wks ago (having had a 3mth battle with GP but that is another story). I have also gone GF (aiming for Paleo) and take a number of supplements.
Some symptoms eased greatly (but remained) in the 3 weeks of GF and supplements (swollen joints, joint pain, stomach acid/digestion issues). Still no enthusiasm for life and very slow moving, exercise impossible.
Two weeks on 25mcg Levo and no change except maybe slightly easier to get up in the morning.
One week on 50mcg and I feel hugely better. 3 people have commented that I have lost weight but more that I am standing straighter and moving more freely. Still some brain fog and residual ankle swelling but this week I have been on 3 25mins cycle rides (first time in over a year), been to 2 dog shows (long days and gained 2 good places - took me all year to do that last year), shopped, cooked, walked in the woods and looked forward to life rather than dreading another day unable to climb the stairs. Yesterday I was up at 6am, busy all day and bed at midnight - without a nap! I am unbelievably different to 3mths ago!
Also - I'm 10lbs down in two months including 5lbs this past week.
So as at today Levo is doing me fine As I get better I will consider the longer term implications and with consider my blood results in 5 weeks carefully and whether T3 is something I need to think about but I have no huge desire to switch to NDT unless I can find evidence that it will not exacerbate my TPOab.
The more we learn about the mechanisms of this condition/disease/system the more it must be understood that there is no one size fits all so the T4 haters aren't right, neither are the NDT haters - we all just need to find what is right for us.
Here's hoping Levo continues to be the one for us - much easier to obtain!
I’m pleased to say levo works for me as well. I started on 75mcg in June 2013 and saw benefits from the very first dose. It’s clear that my GP doesn’t have much of a clue, so I have titrated my dose myself and am now fit and well on 125mcg.
Previously I had been started on 25mcg, which just knocked me out completely. I was then told by an endo that if I didn’t feel better on levo then I definitively did not have a thyroid problem!
I am firmly convinced that many of the people who are still symptomatic on levo are actually not taking enough because of over-reliance on the TSH test only.
It's lovely to read such positive stories... I Was diagnosed as borderline in November and in February managed to insist that I was treated due to all the symptoms I've been carrying. After much ranting about being a person not a number (as in my test results), I am now up to 75mcg and although my weight can vary by 3 or 4 lbs from day to day, I haven't actually lost an ounce
However I know from anecdotal evidence from friends and on here that it is possible to regain my figure and some of my previous fitness - so I will keep fighting to retrieve my 'Go-Go' juice (as it was termed by my somewhat dismissive GP)
You were right, starving yourself was useless - it always is useless. What you did right was to start eating more calories. I know that sounds upsidedown, but this is the way it goes...
Calories are not the enemies - although so many people, including doctors, would have you believe they are! Calories are units of energy that your body needs for all its functions - breathing, digesting, blood circulation, etc. It also needs calories to convert that levo - T4, a storage hormone - you're taking into the active hormone T3. If you are starving yourself, and calories are limited, the body has to choose where those calories are most needed - keeping the heart beating, for example - and, unfortunately, convertion is right at the bottom of the list! So, no calories, no convertion, the T4 pools in the blood and you become more hypo. And when you become more hypo, you put on more weight.
Counting calories is not the way to go for hypos (is it for anybody, I wonder?). Forget calories in vs calories out, just doesn't work anymore. And not all calories are created equal. For example, fat is high calorie, but eating fat does not make you fat - it makes you slimmer! Fat is needed for hormone production and more hormones means less weight gain - less hormones means more weight gain. So we need to eat fat! Forget all this cholesterol rubbish, that's just a Big Pharma money-making scheme.
So, the bottom line is, eat more not less!
And that brings us to exercise...
Exercising is not going to make you lose weight because it uses up your calories. And we've just seen what happens when you haven't got enough! But also, it uses up your precious T3 that you have been struggling to produce. No T3 means you get more hypo and... A healthy gland and body can produce T3 on demand, but a hypo person can't, so...
So make sure you don't over-do the exercise when you go back to the gym or you will undo all your wonderful progress. Leave that until your levels are up to optimal and you're completely well again.
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and I'm in Northern Ireland. 
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