Some positive synthroid/levothyroxine T4 improvement/success stories (especially for hypothyroidism)?

[kopey]

There seems to be loads of negative posts on the internet about the synthetic T4 hormone replacement medication. This probably isn't surprising seeing as the people that would be most likely to post on forums are the people for whom the conventional approach did not work. Was just wondering if anyone has any positive/success stories about how their symptoms got better and stayed better using conventional T4 thyroid replacement? Also mentioning the time that it took would be helpful, and if there were any initial problems etc. Anything, really!

[bd79og]

I got prescribed levo for the first time last November and I keep expecting it to help more than it has yet but I think that dosage is important and it takes a long time to see a dramatic improvement as so many other things such as vitamin D and B12 and iron are important too. It has probably taken me most of my life to get sick so it will probably take several years to get right too!

It has helped a bit especially when I got used to the first dose increase from 50 to 75 but recently I feel ill again (started falling asleep on the sofa every afternoon, getting really sad etc.) and will take a private blood test soon just to see what is happening as the problem with levo therapy may not be the therapy but the poor monitoring (blood test once a year TSH only and if "in range" no discussion even if the ranges here in the uk is twice that considered normal elsewhere).

I think you do need to be very patient and clued up for conventional treatment to work but there are scores of people for whom it is helpful and I think that it is the right direction for me at the moment but that I probably need a bit higher dose.

It isn't the whole answer though for many people and looking at other things such as nutrients and diet is also important. Diet keeps me functioning at about 50 % well. Levo treatment seems to increase this to 75% well providing I also address other things such as vitamin d and B12 and iron. Now to find what will get me up to 90%!

[Nicky_Sopp in reply to bd79og]

Since starting a Paleo Diet, I have definitely felt my best. I've been gluten free for about 7 years, so this is the next step for me. Research Amy Myers, American Integrative GP! Also Natural Thyroid Extract from the US!

[bantam12]

I have been on Levo for over 15 years and I am well, never had any problems other than change of dose occasionally, I have no thyroid but am fine on 112.5mcg. Both my sister's are on Levo, one for over 40 years, again no problems.

[Leahcollett3 in reply to bantam12]

did you find it easier to lose weight if you needed too?

[bantam12 in reply to Leahcollett3]

I didn't have any weight to lose, possibly because I'm hypo due to RAI so never put any on.

[loulou_32]

I have been on levothyroxine for 15 years, and after the initial adjustments have been in the most part well. I get myself back to the docs agwsin if I feel things are going awry, but last time it was my iron levels, not thyroid.

According to my doctor I am in the upper levels when I have blood tests done, but as I feel a lot better and function better on the upper levels they will leave me like this.

What played a major part for me was some simple self care - I am careful with what I eat - not much wheat, take meds an hour at least before food, a mutivitamin and exercise even if I don't feel like it (if I am struggling because the weather is cold for example a brisk 20 min walk works wonders). I also avoid soy profucts and limit calciferous veg.

I have come a long way since thd dark place I found myself in at diagnosis, the meds have made real difference to me, so my advice would be to keep going and have a good think about lifestyle and diet too.

[loulou_32]

Oh I meant to say I am taking 150mcg a day

[Treepie]

I was very ill two years ago and could hardly climb the stairs. Started on 75 mcg and soon increased to 125 mcg which i am still on. Had to add beta blockers for angina type pain once on levo. Also take range of vitamins.Only remaining problem is cold feet.

[mountaingoat83]

Hi Kopey, this older thread might reassure you x

healthunlocked.com/thyroidu......

[diogenes Remembering]

My wife has been on 150/125 T4 for 47 years after Hashimoto's. There have been no problems with daily life. The only precaution is when in younger years we went hiking, she took the top dose the day before, and limited the walking distance to 10-12 miles. Longer than that and the lights went out. Otherwise she still operates well at 77. though energy isn't quite what it was.

[PashaW]

Hi. I was prescribed 100mcg of Levo in December last year. My TSH was around 20 and I was diagnosed with Hashimotos and anaemia.

I had so many symptoms but never made the hypo connection and GP and I were initially putting my depression down to my husband's serious illness .

Over the past 8 months I have improved dramatically-my GP suspected I had been becoming hypo for a number of years. Gradually I stopped falling asleep every time I sat down and started to sleep better at night. Joint pain eased even in my arthritic knees. My mood improved, though home situation means I'm still off work with stress. My skin has become softer and dry patches disappeared.

I'd been very overweight for a long time, but have managed to drop 23lb in 8 months, most recently through tweeting my diet and walking more - something I could not have done previously due to energy levels and knee pain.

Sorry for the long post, but we all tend to vocalise when things aren't going well and wanted to show the positive side of Levo. Things aren't perfect, but I literally feel like a different woman, though it did take a few months to start seeing any improvement.

Keep positive and look gorwars to your symptoms improving. Let us know how you get on when you're settled on your meds.

[jacrjacr]

i think it is more of a issue how you convert the t4 and what your free t3 is on test...is it low normal or high normal with the latter being the key

[sweetsusie]

I started on 25mcg of levo on May 14th, then had a blood re-test and was put on 50mcg on June 28th. I am feeling at least 80% better at this point and have nothing but good to say about levo (so far!). My TSH was over 6.50 when I started and it's now down to 0.683 uIU/mL. I'm hoping that this continues to work well.

[Daffers123]

I am pleased to report that I am very much better now -having at last got my Levo brand and dose right. it's taken 2 years of trying this and that combination - T3, NDT etc plus vits., which I couldn't tolerate .

Had been fine on Gold shield Levo til Mercury Pharma took over manufacture and the fillers they used completely upset me.

Am now on Wockhardt Levo and have titrated my own dose of T4 and feel OK most days. I have learned I am very sensitive to dose changes and spread them out so my body can get used to them.

[Rach47]

I have been on levothyroxine for about 10 weeks and it took about six weeks before I noticed I wasn't as tired, and for other symptoms to go such as aches and pains, however now I am starting to feel tired all the time again so think my dose needs upping but I am only on 50mcgs and am doing a demanding job. Very few side effects either 😁

[kopey]

Thank you everyone!! Please keep posting any more success stories, it's encouraging to hear that Levo works for some people. Will keep you updated on how my treatment goes. Have only been on Levo for about 1 and a half weeks. So far haven't noticed any positive or negative changes, except a slight flair up in my acne which seems to have calmed down now (i hope Levo doesn't make my acne worse because I was hoping that taking Levo in the first place would make my skin better).

I was diagnosed with Coeliac three years ago, so am completely gluten free and also supplement with a wide range of vitamins so am lucky in that I don't have any really debilitating hypo symptoms (only lethargy, acne, light sensitivity, weight gain), but definitely could do with having more energy and just some 'joie de vivre'. Also feel very lucky to have found out about thyroid and coeliac problems early (i'm 21 years old). My doctor has recommended I also go dairy free because acne is one of my complaints and that can be linked to dairy consumption but i don't have much dairy anyway and find it hard not to be able to have some dairy once in a while!

It's comforting to know these forums exist because I know that if i feel worse continuing on levo, there's always other options like NDT that i can try. I think i've had hypo symptoms for a while but we're lucky because of coeliac, i get about 3 blood tests a year, and my TSH was caught at 59.1 on the most recent test. but 6 months ago it was only 3.0 so it's definitely shot up, which is why i've started medication (75mg levo). Like i said, i will update on how i'm feeling in a couple weeks time and then again at the 6 week mark. hopefully will see improvements in both symptoms and the TSH level!

[Minigirl in reply to kopey]

Hi Kopey, For acne try Brewer`s Yeast tablets.

Hope this helps. @+Minigirl

[puncturedbicycle]

Keep in mind that a lot of people don't see any results in the first few weeks. It can take a while for your meds to level off, and more time to tweak the dose so you're on the right amount. This may be one of the reasons people post for the first time, because they've taken their meds and nothing is happening, and their doctor may not have told them what to expect. Give it 6-8wks to feel something, longer for your symptoms to be relieved and after any dose change it may take as long to notice a difference.

I don't have specific stats but for every one of us having trouble there are probably 10 who feel great on levo, and another 20 who feel okay enough - better than before meds - but don't realise that they're undermedicated or not taking levo correctly. There will also be those who started out feeling good on levo but find they need to make some changes eventually.

There are a lot of permutations to thyroid problems, and everyone is different.

[Minigirl]

hi kopey, Good reports from people who are on `Tirosint in monodose`liquid satchels,

gel capsules, and drops, thyroid medication, it`s ingredients are: Levothyroxine, gelatin,

glycerin, & water. They are saying it`s the fillers in other thyroid tablets that we are allergic

to, that`s giving us problems. Tirosint is available in USA, Italy it`s made by IBSA Pharmaceuticals (Swiss) wish it was available world wide. It fixes sweating, hair loss, weight gain, fingernail problems, puffy face etc. Look at the Tirosint website.

@+Minigirl.

[Leahcollett3]

hi, i started 25mcg of levo in late july... now im on 100mcg and i feel great, i didnt relate that me being knackered in the afternoon was a sign i was in bed for 7.30pm most nights and considered it normal - now i have loads of energy i go college 2 evenings a week.

the weight loss hasnt come yet - although i had my levels checked a week ago and they were still at 2.96, so i still have a way to go - ive been told it gets easier if my tsh levels are between 1-2 so im holding out for that

[Bengalgal]

Hello, I have had hashimotos since at least age 20, diagnosed because my thyroid was so swollen. I was fine for 26 years on levothyroxine but then got hair falling out, hugely heavy, off the charts, periods, dry skin, muscle cramps, weight gain and terrible brain fog. My blood levels were in the normal range despite all this. I though it was menopause. I found a great endocrinologist in the US near me who started me on T3 in addition. Symptoms vanished quickly, some in two weeks, others a month. No side effects. I need monitoring though as he used to adjust the 2 meds up and down. I am searching for a good endocrinologist who will go by symptoms in the UK, preferably near Cambridge.

[Bengalgal in reply to Bengalgal]

I take 100 mcg of levothyroxine and 20 mcg of liothyrine.