Hello !
I realize everyone has different levels of disease, and corresponding healing times. I would appreciate any info as i feel i am a candidate for this med, going to a endocrinologist end of next week.
I also realize some people do not feel Levo.was right for them and they go on Synthroid brand name , or the natural thyroud types.
Have a nice day !
Hopinggh
It very much depends on how hypothyroid you are before you start medication. Foe example someone with a TSH over 100 would take longer to stabilise than someone who has a TSH 10. The normal regime is to commence levothyroxine at around 50 mcg per day then repeat bloods after 6 weeks then increase dose by 25 mcg increments until TSH is lower half of normal and or symptoms resolve. A ball park figure is about 6 months, but sometimes it can be quicker and occasionally never! Please remember that many people do well on levothyroxine but a sizeable minority 15-20% have longer term problems. It is really important to ensure vitamins and minerals are optimal in order for the body to utilise Levo correctly.
If you have blood results please post for further advice.
Thank you so much and for your speedy reply as well !
I posted my thyroid numbers a few days ago and received very kind information on my health status . . My TSH is 4.1, free t4 .1. .. .8-1.7, free T3 2.8... 2.0-4.4, anti, bodies fine, ferrutin 56, 15-150, kind of low, iron 83 , 27-139, iron saturation 29, 15-55, TIBC 290, 250-450.
D is 55
B12, 1342
Folate, "more than" 20
Im wondering if i have problem using the B12, as the folate is high too, and i read the B12 usu eats up the folate, an indicator why folate could be high in some people.
Dr has asked me to stop B12 multivitamins for three months.
So, it looks like i cant get anxious to start feeling better right away and can, hopefully, look forward to feeling better in six months.
Thank you, again, for your help and kindness,
Hopinggh
My answer is - Never, ever, felt well on levothyroxine. I was far more unwell on it than before I diagnosed myself when TSH was 100.
Thank you. Im sorry.
Did you switch meds?
I didnt know TSH could go so high.
Take care.
Hopinggh
Me too, the only inkling I had that there was a problem was that I couldn’t lose weight, apart from that I felt fine. I was given Levo and developed a list of about 20 horrible side effects. The brain fog was so bad. I did my research and got some NDT and all the horrible side effects went away. I still can’t lose weight but at least I don’t feel like crap too.
When we've felt so awful it comes as a relief to find that our symptoms can be resolved. To do so we need good doctors or endocrinologists but most seem to concentrate on the TSH instead of relief of our disabling symptoms. Rarely do they test FT4 and FT3.
We are given levothyroxine and it comes as a huge surprise that we're feeling worse.
Endocrinologists or GPs seem to be poorly trained in symptoms of hypo patients. Also I doubt they are really aware of how bad we can feel especially when we expect, when given prescriptions, that we will improve but it comes as a shock when we feel worse after taking levothyroxine than before.
They seem to take most notice of the TSH, which is from the pituitary gland, not the thyroid gland and they don't realise that we need a TSH of around 1 or lower and a FT4 and FT3 in the upper part of the ranges. Rarely do they test the 'frees' and many members have got their own private tests.
Hi...I am
Having every side effect on Levo as well,
But the brain fog scares me the most. I hate not feeling right in the head. I stopped the medicine two days ago and will be seeing my endo in two days. Which NDT are you on? I was on Naturethroid and did great but of course now it’s recalled. Also what dose are you on!
Hi, I am on thyroid s but am running out, so I have bought some metavive to try as many people on this forum seem to do well on that.
I was very unwell for four years. I was put on levo and within one week I felt 'normal' like I'd come out of a nightmare. Feel very well on high dose of levo. If I stop it, within a week I start to feel bad again.
Thousands seem to do well on levothyroxine but many doctors seem not to know that the aim is a TSH of 1 or lower so may stop increasing dose to alleviate symptoms just becaue TSH is in middle of range.
I'm glad it suits you and believe a majority on it do fine. Its the 'other side of the coin' i.e. if we take levo but have many more side effects we don't feel well at all.
I can’t say I felt instantly different but my husband said he saw a difference in me after the first two weeks but I’m still in my first six months of taking it and I’ve never been given the same make for two months consecutively. I have a theory that if it’s at all possible to get the same make for at least three months I could possibly see the difference but who knows .
which pharmacy do you get your levo from? And is there a particular brand which has felt better? You can ask your GP to request a specific brand (although the pharmacy is not obliged to follow this)... Lloyds pharmacy should have a regular stock of Northstar (although beware, the 25mcg is not the same preparation as the higher dose tabs) and Boots *ought* to have Almus. Others have said they have had regular brands from Superdrug but not tried them myself. There is research out there (academic.oup.com/jcem/artic... that says that changing brand is like starting from scratch each time.
I get it from my surgery pharmacy but if I’m going to have future problems with one that suits me I’ll be going elsewhere to one that can carer for me. Mercury appears to suit me and I’m on 50 mcg at the moment with expectations of having an increase in the next weeks/months.
I think it's wrong for the pharmacist not to provide the same manufacturer of levothyroxine (or the same make of any other named levo). We patients cannot make a decision of whether or not it is the way the manufacturer makes their levo. Most of us, when we feel a beneficial improvement, request the pharmacist to keep supplying the make because if we have a reaction with changing of levo frequently, we wont be able to make sense of our symptoms. After all if we take a paracetamol, we expect it to relieve our headache or pain, we certainly don't want to feel worse.
How much levothyroxine are you currently taking
Dose should be increased slowly upwards in 25mcg steps until TSH is under 2 ..often when adequately treated TSH will be well under one
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to regularly test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
After a change in prescription and being on levo again, almost a year. I started feeling better little by little but, after a year I am feeling myself. Let me explain: The doctor saw my low TSH and lowered my dose. Felt horrible and went to another doctor who kept the same dosage but in another pill. After 3 months, I was much worse and this doctor said " I think you forgot to take your pills". Believe me, I am patient but, that day I cried like a crazy in the parking lot. Then, he put me on levo again. A little tiny bit higher dose. 5 months later, I went to another doctor for whom I had been waiting for over 8 months. He explained it was going to take some time. I went for labs two weeks ago and visited him last week. Everything ok but cholesterol. I know in a higher dose it would go down but, he wants to avoid heart palpitations. I trust this doctor and I am trying to find a primary care one as an orchestra director. Good luck. I hope you feel better soon.
Thank you very much ! I have other health problems too.
I hope you feel better soon too !
Hopinggh
Thank you very much !
I appreciate everyones response!
I guess i need patience to heal.
May i ask if you had a very high TSH starting out?
Have a very nice day !
Hopinggh
Had no trouble with Levothyroxine nearly 40 years. The majority of folks take Levo with no prob. There’s a few who don’t convert it well (my daughter) or are better with natural products and you’ll see many posts about that on this site but they are the minority. Give it a go - as one doctor said It’s just like brushing your teeth’ and so it proved. As I get older things are changing but had a good run with no problems..
I think majority are on this website because Levo doesn’t work for them and the rest out there doesn’t even know any other treatment is possible so suffer silently. I certainly wouldn’t agree with statements such as “majority takes with no problem”.
Exactly but the majority of people on this website are not the majority of people taking Levo - the third most prescribed medicine in the U.K.. 29 million people! When it doesn’t suit is when the problems start and makes getting alternative treatment difficult which is why this site is needed.
I know that. What I’m saying is that there has been some research done that showed 50% of patients saw no improvements in their wellbeing after starting Levo. Statistic that has nothing to do with this site.
I’d want to see the source, how good the study was and how conducted. Hopefully you can supply that?
It’s from The Root Cause book by Izabella Wentz.
Also I don’t know where you took that statistic from... UK population is 66m so 29m as you say would mean half of the British population takes Levo. Don’t think so!
Sorry that’s 29 million prescriptions not people.. I get 4 prescription a year so probably 1/4 that. Interesting article though. prescriber.co.uk/article/le...
I think most get one or two month prescriptions.
From memory, ten years ago the rate was just a bit over 2% of patients across England.
One million people take Levo in the UK. Not 29m not 1/4 of 29m.
Thanks for the correction - apparently many people get their Levo monthly - they tried that with me for a while but I complained and went back to every three months. Mind you the figures still don’t make sense? Unless they count a prescription for say 125 mcg. as 2 prescriptions? Definitely said 29 million prescriptions.
No idea... I used to be prescribed monthly or bi monthly back in my Levo days so maybe some people do that 🤷🏼♀️
I felt better after a couple of days
Hi
Welcome to this informative site, without which, I would be floundering.
I was started on 25mcg of levo & felt the benefits quickly but over time it has had to be increased. I tried NDT & T3 when I started to go down but they didn't suit me. I know that it is levo that is right for me. It's not plain sailing with this thyroid disorder & doctors seem to know less about it than we would wish for. They seem to think there's a one size-fits all.
There are some doctors though that will listen to you & once you get one on your side & help from this site you should be ok.
Good luck.
Thank you for psnl input and inspiration !
I do so very appreciate this site and everyone helping one another !
Hopinggh
Newly on levothyroxine. How long until I start to feel better?
When did you feel better on the right dosage of Levothyroxine?
Fluid retention - how long did it take for it to go?
How long did it take everyone to get stable on the right dose?
