Would love to hear levothyroxine initial/beginning treatment anecdotes! 😁

[GreenhouseGal]

Looking to hear people's stories of their first few months on levothyroxine. I'm still going through a roller coaster of symptoms... and I'm a month in. Tell me how you felt, symptoms, comparisons to how you normally felt before, when you starting feeling more like yourself... more detailed the better! Please include any relevant blood results that coinside with your symptoms/story. I get to get blood work drawn on Monday (tomorrow) to see where I'm at. Won't take levo tonight- been off biotin since Thursday. Will get my tpo tested as well to see if I have hashis. Never had a med make me feel this strange! I look forward to your stories! 😁😁💛💜

[Regenallotment]

before… felt like walking through sludge. It hurt to just be, all over. I was compliant and willing to miss out. Depressed, anxious and had awful memory problems. Hair falling out, numb tingly arms, 2 very heavy periods a month.

Each of my increases were based on advice here and test results. I’ve also sorted diet and Vitamins too.

25mcg Teva felt good for a week then dreadful, periods went back to 1 a month, but very heavy.

50mcg Teva felt good for 2 weeks then worse than before (gained 10kg over this time period 25mcg-50mcg) darkest weeks.

75mcg Teva felt awesome, ran up some stairs at work, had loads of energy until week 4 felt terrible, crashed. Tired all the time. Sleep disturbed.

100mcg Teva better than 75 but residual pains aches and tiredness.

125mcg Teva better than 100 and could stay awake in the afternoons and start driving to work again (couldn’t drive safely before as I was falling asleep in the afternoon and at traffic lights). Silent reflux improved. Started losing 1 kg a month as I got more active.

Switched to 125mcg Aristo and felt good but some pains and gut issues continued.

Added 5mcg Roseway Lans compounded T3 and residual aches and pains, chronic ankle pain resolved in 2-3 days. Periods lighter and no pms.

Next test over range for FT4 and FT3, dropped to 100mcg & 5mcg T3 felt great, sweaty face doing activity in hot weather, heart rate 10 over my usual, no change in basal temp. Slightly loud heartbeat at bedtime. Loads of energy, stead weight loss at 1 kg a month

Next test even more over range, discussion with Roseway and after 2 weeks of 50mcg T4 I’m now on 75mcg T4 with 5mcg T3 on alternate days, with the advice to go up to daily T3 when I feel hypo symptoms again. Which I have felt is this week. Testing again in 6 weeks. Not sweaty, nor loud heartbeat anymore).

My guess is I’ll need to alternate 75/100 in winter and 75/75/100 in summer with 5mcg T3 year round.

Hope that helps, things that made me feel better along the way are;

Going GF and Dairy, soy, alcohol free

Trying and occasionally failing at sugar free, definitely helps but I have zero willpower 🤣

Getting vit D over 100 which took Aaaages

Getting folate and B12 up

Getting Ferritin up took over 12 months and is probs what contributed to my over range results. Short term 3 arrows is very effective. Long term heme is a worry from what I’ve read.

I also take Selenium and magnesium and now zinc as that was tested recently and low, introducing it has coincided with unusually normal bowel movements for me! Hurrah 😃🌱

Feel free to ask questions, my health is my specialist subject 🤗

[humanbean in reply to Regenallotment]

Although it is okay to take different doses of T4 on alternate days or on only a certain set of days per week, it is essential to take the same dose of T3 every day.

[Regenallotment in reply to humanbean]

Yes I’ve seen that here a few times. Do you know why that is the case?

I realise that might be true for some and some formulations. But not according to Roseway labs prescriber who is monitoring me closely and recommended trying it as I have been overmedicated with some mild symptoms but really felt the benefit of 5mcg T3. Based on last TFTs I still have significant circulating (FT3 was 10 range to 6.8), 24 hours after last T3 dose) . Prescriber says in some people it lasts longer than others. If it continues I will have to stop it so trialling this for now. 👍

[humanbean in reply to Regenallotment]

It's because of the difference in the lengths of time they each take to metabolise. T3 is metabolised quite quickly, so there would be a big difference in the amount of T3 in your body when comparing a day when you took T3 and a day you didn't. People feel better if they keep their T3 at a constant level with the same dose every day.

T4 can be taken with different doses on different days, although smoothing out one's intake is better for most people. But with T4 someone could take, say 100mcg on Tuesday and some of it would still be available in the body for several days - T4 is a storage hormone whereas T3 is an active hormone that is used up much more quickly than T4.

[Regenallotment in reply to humanbean]

I get that but I had no whoosh even at the start with this compounded T3 and it seems to hang around. I guess my TFTs could also be including converted T4, but I have Dio2 and T3 stayed low % through range despite increases on T4 alone, although ferritin raise may also contribute to improved conversion. Discussed it at length with Roseway, I’m happy for now, I’m not having dips or any roller coaster feelings. I can change to daily whenever it feels right 🤗🌱

[humanbean in reply to Regenallotment]

If what you are taking is helping you then that is the really important thing. Since doctors don't care how well we feel it's up to us to experiment on ourselves, and find what works for us.

One thing I would suggest though, is don't assume that what works today will still work in a year's time. For example, I couldn't tolerate anything much in the way of thyroid hormones when I first began. I couldn't tolerate T4 or NDT at all so I tried T3. But that made my heart go nuts. I broke up my T3 dose into crumbs and took it in about five doses throughout the day.

Over time I was able to amalgamate doses and now, years down the line, I take my T3 in one dose as soon as I wake up. I also take T4 at the same time (it took seven years for me to get myself in a position where I could tolerate it). Experimentation with my doses may have reduced over the years but it hasn't stopped completely. And these days my heart doesn't really react to my thyroid hormones any more, or the effect is so mild that I don't notice it.

[Regenallotment in reply to humanbean]

Thanks so much for sharing this experience it’s super helpful, it also mirrors the other advice I’ve had from Roseway regarding hearing my heartbeat . Onward with slow and steady tweaking ! 🌱

[Noelnoel in reply to Regenallotment]

Out of interest, why did you introduce T3. All seemed to be going well on T4 mono

[Regenallotment in reply to Noelnoel]

I still had chronic ankle pain, digestive trouble, aches, low energy and still some brainfog. I’m 49 a teacher in a sixth form and need to be the very best I can be, I have to work another 18 years till pension. At 45 I was active running 8km 3x a week before all this started and keen to get back there. However I am realistic I don’t think I’ll ever run again but I can now play golf and kayak, cycle everywhere do intermediate Iyenga yoga and managed staff rounders last month. T3 has made all that possible for me.

But, yes, you are right I may well be better off on T4 only, I was thinking about this over breakfast. I’ll try this, then that and see what is best. 🤗

[Noelnoel in reply to Regenallotment]

I have zero willpower

No, I don’t think so. Doing all that you’re now doing takes discipline and determination. That equals huge willpower. Don’t underestimate yourself

So, my question regarding introducing T3; I wasn’t for one minute suggesting you shouldn’t have done that, I was curious as to why but I do have another question: why the swap from Teca to Aristo

Also, interested to know what your conversion looked like on T4 only. Sorry if you’ve already answered these questions but I haven’t read the entire thread

Apologies too to GreenhouseGal, I’ll shut up after this

[Regenallotment in reply to Noelnoel]

I’ll message direct and you can ask what you like 👍

[GreenhouseGal in reply to Noelnoel]

I don't mind 🙂

[Sneedle]

Although my early increases were too long ago to remember, I'm going from 75 to 100 now and I'd say...if your ferritin etc. are reasonable and you're supplementing to get the levels up, but still feel weird - have a think about your adrenals!

I'm three weeks in.

I'm just about to do a Regenerus cortisol and dhea test ( Cade83 we can do them same time and compare if you want!) as this dose increase feels like someone's plugged me in to an electrical socket - I'm more tired and currently more wired than I was. Headaches, head pressure, which I had beforehand, are worse. Intense anxiety feeling like I'm going to explode!

Four days ago though, that anxiety pressure did 'release ' somewhat, and became more diffuse, spread throughout my body rather than in my heart and belly areas. So that's improved.

Barrel of laughs🙄

But I do believe it will get better and anyway I have to do it in order to get some clarity on what's causing what.

Not sure if any of that's helpful but, hope so!🌸

😀

[GreenhouseGal in reply to Sneedle]

I can relate to feeling exhausted but wired! I haven't been getting more than 30 mins of deep sleep a night for a couple weeks... but last night I did. I hope it continues, as I feel less anxious when I get enough deep sleep. 😁 I just feel physically numb, but with all the normal aches and pains. Very, very strange feeling. I love the responses! 🤗💛

[Sneedle in reply to GreenhouseGal]

Numb but with all the normal aches and pains...that is definitely strange!I hope you continue to improve, it does take time on each dose, more time than we want it to take!!

It's a good post you made, asking for our experiences👍

[GreenhouseGal in reply to Sneedle]

I just like to understand all the ins and outs. Everyone is different, but going through the same general roller coaster. I love learning new things! 😁😁😁😁 Hearing everyone's experiences is very, very enlightening. 😌😄🤓

[Regenallotment in reply to GreenhouseGal]

Poor you that isn’t enough deep sleep, hopefully that improves 🤗

[GreenhouseGal in reply to Regenallotment]

Yeah.... it's weird. Gives you that "pulled an all-nighter" feeling. 😂🥴😵‍💫

[Regenallotment in reply to GreenhouseGal]

Ah yes that is familiar too, I’d forgotten that feeling. Hope your steady increases help resolve this. 🌱

[Cade83 in reply to Sneedle]

I bought my saliva cortisol test from medichecks but I’m happy to compare results. Although I feel so ill right now I’m close to going to a&e. I do have covid which is totally not helping how I feel but I’ve never felt so ill in all my life right now and I’m starting to lose my appetite. I’m finding really really hard not to completely freak out because I feel that ill. It’s totally pants.

[Sneedle in reply to Cade83]

Hey Cade,

It's a horrible virus and it sounds like you're really suffering. I'm sure Covid is making everything so much worse. Have you called NHS 111 and explained you have Covid? And exactly what is happening. Tell them your medical issues, to make it clear Covid has come on top of an already shaky health background, and ask their advice. 🤗

[Cade83 in reply to Sneedle]

Hey sneedle no I haven’t. I keep going up and down. I do feel slightly better after eating but really didn’t need covid right now. Think I’ll wait it out while covid goes and hope it gets better once that’s gone. I don’t like this getting old, I want to be 20 again and not have to worry about health or shall I say be more conscious for later on. Thanks 🤗

[Sneedle in reply to Cade83]

It's a heck of a blip alright, getting covid, let alone having health stuff beforehand. The absolute best thing you can do is rest and drink juices/smoothies and eat fresh stuff as GreenhouseGal suggested. Then hopefully once you're better you'll have more clarity about what to do re testing and supplements.

In the meantime you might take plenty of Vit D, Folate and B12, to keep your levels up - somewhere I thought I saw a summary of a prospective study where they assumed that the lower the person's levels of B12 and vit D, the worse the symptoms of covid. I'm not sure if the study happened, but it was on the NHS Health Research Authority website.

For what it's worth I took 12.000 IU Vit D daily (by accident! did not look at label) for several months last year, and my tested Vit D level was only 80.

All best wishes

🌸🤗🤗

[Cade83 in reply to Sneedle]

Yeah it’s not great timing at all. Yeah it’s a bit rubbish cause I don’t wanna test things while I’m ill it maybe different. Can’t do the cortisol because I can’t post it until I’m better but that could be false readings because of covid maybe.

Wow that’s a high dose 😬 good you weren’t too high though. I do take supplements for those though. So fingers crossed it don’t take long to get over it. Sorry for jumping on your post GreenhouseGal, I really hope your symptoms improve. It’s horrible when things aren’t right. Fingers crossed things improve real soon. 🤗🙂

[GreenhouseGal in reply to Cade83]

Eat lots of fresh fruits and veggies and drink distilled water. Works AMAZING for covid. I had covid for 2 weeks last fall.... did that the first week, felt 80% better. Stopped after week 1, got 5x worse and had to go on antibiotics. Got better, but wasn't sure if it was the antibiotics that 3rd week, the fresh produce, or just time. 🙃 🤗💛

[Cade83 in reply to GreenhouseGal]

I’ve been eating fruit although I’m a bit lazy when it comes to veggies. I don’t eat enough at all. Sounds awful that you had to have anti biotics though. 🤗

[GreenhouseGal in reply to Cade83]

Yes, it was. I try to avoid them like the plague... but when my temp was over 103°F, and I was wet coughing, I figured it was time since it was the 2nd week. I never get sick like that! 😔

I like to get those pre-cut veggie trays, and dip in your fav ranch dip. Yum. 😋😁

[fiftyone]

for four years I complained to the doctor about tiredness. They did nothing. Then a locum appeared on the scene, diagnosed under active thyroid, prescribed levo and within a week, all the tiredness went. It was like being fully alive for the first time in years. After a while a doctor increased my dose massively. This resulted in me becoming psychotic, thinking someone was trying to abuct my three year old daughter. Eventually my husband called the doctor. He told me to leave off the thyroxine. Gradually reason returned. I started thinking 'why would anyone want to abduct my daughter.' Now I am on not quite such a high dose but still very well medicated and feeling well for years. My TSH is non existent, my T4 is way above th e range, but my T3 is highish but normal. Sometimes doctors panic at the figures, but I reassure them it is normal for me and, thankfully, they listen.

[Regenallotment in reply to fiftyone]

That is such good news! I hope I can get there. 🌱

[birkie]

Hi GreenhouseGal💓

Well mine is a long story... First got a diagnosis of colitis /lactose intolerant in 2015 after 12 days in hospital, took 12 months to recognise my trigger foods but did it and my colitis was well under control.

Started to feel very unwell with what turned out to be graves thyrotoxicosis (overactive thyroid) in 2016/17 but it took over a year for my GPS to actually Diagnose me (kept saying it was my menupause state 😠)

Put on anti thyroid drugs and my colitis (gut/stomach) reared it's ugly head, I honestly didn't link it to the anti thyroid drugs at the time I went over what I'd eaten, but no trigger foods were noticed, I eventually started vomiting the drug back and informed my gp who just told me to persist with it as the side effects would ease... They didn't and after 8 weeks I was now not getting this drug in my system😠

Again told gp who changed it to ptu which was no different still had gut issues and vomiting.

Gp left me to go into thyroid storm, in hospital they took me for an emergency bowle scan as I looked pregnant, all my small and large intestines were very inflamed, I explained what had been happening when I was taking the anti thyroid drug, obviously it was not getting into my system hence thyroid storm.

It was found that it was definitely the anti thyroid medication so I couldn't go on it again and my bowles returned to normal after 2 days.

I later found out both drugs contain lactose and other ingredients that effected my gut/stomach.

Thyroidectomy in 2019... Put on T4 think my first lot was workheart 🤷‍♀️ after around 4 days I started with the same bowl/stomach issue explained to surgeon (was still under him) he just told me your body will adjust to them, I continued for over 4 months, bad inflammation, diarrhea, bloating, cramping, till I couldn't take it anymore, I found out they contained lactose and mannitol, got them changed to lactose free but still the gut issues remained, put up with this as I was told to, but my bloods were awful, eventually gp sent my results to endo who recommended I try T3 as it looked like I was having absorbtion problems.

Got on T3.... Same symptoms with gut... Found out it contains lactose /mannitol 😠... I could honestly have slapped my GPS face😠 I got very angry as he knows I'm very lactose intolerant, got them changed.. No improvement in my gut symptoms or in my thyroid condition 🤦‍♀️my gp since as constantly chopped and changed my T3 medication hoping for a different out come... One gp actually taking me off T3 because it was dangerous and causing all my symptoms 😠 through sheer anger I came off T3 just to show the gp what would happen... In that my thyroid blood work would hit the floor, she said they would not... They did.. Then she didn't want to see me again and put me back to endo.. It took 2 months to see the endo so I had to stop on the T4 until then... And endo put me on T4 liquid which was far worse, I told her I'd tried it before but it gave me the same gut issues, did the same again... So I rang my gp and told him to get me back on T3.. Even though I'm having gut issues on it it's far worse on T4.

He put me back on T3... Another make.. Roma, I'd been on teva before and it was not good.. This Roma is not to good either I'm still having gut issues, diarrhea, cramping, burning sensation in gut after taking it, bloating ect😔

On my last blood work my TSH is 1.77...my T3 is.. 5.4) gp will say this is normal, but that's on paper.. I honestly can't see how I can continue taking a drug that's soupose to make you feel well again, when it's giving me so much pain in my bowles and stomach.

Yesterday I was in so much pain, had around 4 very muddy bowle movements with server cramps, it's hell😔 I don't feel any better than I did when my thyroid was in my neck, I have all the symptoms of an overactive thyroid.. But I'm not showing I'm over medicated 🤷‍♀️

I was told after thyroidectomy all my symptoms would go.. They have not.. But now I've got gut/stomach issues to add to this,.

I honestly just want to feel well again.

And in 2020 my parathyroid and calcium went over range, 2 endocrinologist wrote saying it looks like I may have primary hyperparathyroidism 🤦‍♀️ nhs wouldn't do anything, so I went to see a private parathyroid surgeon who as identified a nodule in my neck.. Having chlorine pet scan on Wednesday in Liverpool 🤞 it's been a total nightmare for me this thyroid /parathyroid journey but gps and endocrinologists don't seem to understand just how ill we can become if we're not treated properly 🤦‍♀️

[GreenhouseGal in reply to birkie]

I know the feeling of just wanting to feel well again! I pray that you feel well soon! 🙏 I've been having issues the past 2 years, so I can relate. I hope your pet scan gives you some answers!! 🤗🤗💛💛💛😄

[Mlinde]

Starting on Levo was a nightmare for me 15 years ago. First, within 24 hrs of my first 50mcg dose, I got terrible leg pains when walking (these have never gone away and may be due to the Levo exacerbating an existing condition, tho' docs say it's a 'coincidence') and second, 3 years of 'brain fog' which I only became aware of when I woke up one morning and realised the 'fog' had lifted, I think due to my body eventually adjusting to the hormone? And to add insult to injury, the Levo doesn't really work well due to the fact that I don't seem to convert the T4 to T3 too well, so I have all the symptoms (but reduced effects) of hypothyroidism. Years of trying to obtain an alternative treatment have failed miserably (eg NDT and/or T3). Altogether a depressing experience which has transformed my life.

[SarahJane1471]

Just over two years ago I started Levo. At first I felt alive, having been walking through treacle for 2 yrs, but then after a few weeks the symptoms returned. Dose increased so back up for a few weeks then down again. This rollercoaster carried on until January this year. I was on 125mcgs Levo but could not tolerate any higher. Then I added a small dose of T3 which again made me feel alive. Now I’m at the tweaking stage. I’ve reduced Levo to 100 and Lio is 6. I did this because I was over heating even with mild exertion and tired again so I think I was over medicated.

I will say ALL the doses and blood tests are individual. It’s about getting things right “for you”.

[humanbean]

I just wanted to point out that many people who take thyroid hormones or anti-thyroid drugs do very well on them and live perfectly normal lives.

The people who come to forums like this one are the people who don't fit into the nice neat categories that doctors expect e.g. clearly hypothyroid or clearly hyperthyroid based on blood test results, and who do well on the standard treatments.

Unfortunately doctors and endocrinologists don't appear to be able to cope with the idea that patients don't always match their expectations and they insist on treating us "the easy way" (if they treat us at all) rather than accepting that we aren't all clones of each other and they need to engage their brains and accept we are different.

[GreenhouseGal in reply to humanbean]

I'm going to make an appointment with an endo. Might take 6 months to get in... but at least I will at some point. 😂😝 Right now I just see my new primary doctor. He seems malleable- I told him I wanted my tpo tested and he obligated. So we will see!! 😀 🤞🤞🤞

[Suzi-B]

Hi, i have never felt normal, since being on levothyroxine and liothyrine, not in the past 14 years, that is not untill my doctors found out via a routine blood test i was anaemic and needed to take iron tablets twice a day dose 200mg morning and night, now in my system i feel like my old self again! get everything checked, tell doctors you don’t feel light, my need optimal results……….

[humanbean in reply to Suzi-B]

I did very poorly on thyroid hormones until my iron and ferritin levels were much closer to optimal than they were at the beginning.

[Suzi-B in reply to humanbean]

me too! glad you feel better ❤️

[GreenhouseGal in reply to Suzi-B]

I want to feel like my old self again too! 😂 I started the 13.5mg of iron just in case I'm deficient. I don't make hardly any stomach acid, (related to hypothyroidism?) So I know my body doesn't absorb nutrients like it's should. The only thing I wish I could take in supplement form is potassium- since our bananas here are soo bland... more like plantains than bananas! 😔😮‍💨 But I understand why the supplements are such a miniscule dose with the possible heart effects. I drank a whole bottle of pineapple juice yesterday!!😯 My body couldn't get enough with its potassium content... 😆🤷‍♀️I have slept well 2 nights in a row.... that hasn't happened since I started the levothyroxine. Felt better yesterday than I have in a month, due to good sleep. Getting my levels checked today- I'm anxious to see the results. Scared that my levels will be *normal* and my doc won't want to increase my dose just based on symptoms....😬😢 But I need to not overthink it and not let my anxiety get the best of me! 🙏💛 I honestly think the anxiety and body pain is the worst symptoms for me. I would love to see them diminish! Thank you for your responses, I appreciate you all! ❤️ Can't wait to hear more. 😁

[jgelliss in reply to Suzi-B]

I was anemic for years . After my TT I was dosed on high T4 . I had so many symptoms palpitation insomnia anxiety moodiness. Years later adding small dose T3 caused me lots of pain in my adrenal area. Adding Iron made a huge difference for me. I was able to tolerate higher doses of T3 . No Dr ever flaged my low Iron. Joining this wonderful forum and reading books on thyroid ailments it finally changed my life for the better. Thankfully.

[Suzi-B in reply to jgelliss]

exactally that! no doctor ever did me either……. that was untill u had a stomach ulcer and bleed, then suddenly they said oh your iron levels are low at 6.7 apparently dangerously low……. been on iron since may and i feel like i’m 17 again lol

[jgelliss in reply to Suzi-B]

I'm so happy for you that it was a total game changer for you as well. The problem that I find that Dr's are not trained or well enough with nutrients. That is a very big problem for many of us who need some direction with nutrients along side with our thyroid meds.

[tattybogle]

if you later have difficulty getting GP to increase dose 'because TSH is in range now ' this post will come in handy:

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-

This post will help you understand why getting TSH 'anywhere in range' is not the same as optimal for some people : healthunlocked.com/thyroidu... the-shoe-size-analogy.-

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

From memory , ( 20yrs ago, lol) diagnosed aged 37

i felt 'nothing much' for the first 2/3 wks on 50mcg , then felt improved for about a week. then back to rubbish until blood test,

dose then increased to 100mcg ..... felt improved again after about a week/ 10 days .. this time the 'better' lasted about a month ? ....then tailed off again , but this time not as bad as before.

Then dose increased to 150mcg .. that improvement lasted quite a few months. then tailed off a bit ...... i tried going up to about 175mcg for a month but this time it didn't help .

Blood tests showed fT4 was far too high . so GP insisted i put it back to 150mcg .. and later suggested i put it down to 125mcg .. i did try125mcg for 2/3 weeks ,and didn't like it ,so put it back up to 150mcg ..... but with hindsight that was not for long enough to give 125mcg a fair trial ... i now know from experience that any dose change needs at least 5/6 week before you have any real idea what symptoms will feel like on that dose once it's properly settled in. i should have probably tried 125 or 137mcg for at least 3-6 mths .. but i didn't . i stayed on 150mcg for 15 yrs .

over all, i would say levo made me feel about 75% better than i did when diagnosed,, but i've never felt 100% back to how i was before i went hypo.

for comparison (but don't get too hung up on comparisons , in practice we are all very different)

my TSH acted a bit oddly at the beginning, it seemed to get 'stuck' at about 2.5ish even though i had very big dose increases.. then after about a year it decided to fall through the floor ... most of the time since then it's sat around 0.05 - 0.2 on 150mch levo .. then a bit less ~ 125mcg for 3 yrs (after menopause changed the amount i needed) , now 112.5mcg (but i'm nearly 60 now with nowhere near as much muscle / much less physical work than when i was on 150mcg .. so i'm not surprised i need a lower dose nowadays)

my early results :

date .................... TSH ........................... Total T4 (Free T4 was not done back then)

diagnosed ....... 6.8 [ 0.36 -4.1] ...... 91 [65-155] .... started on 50mcg levo.

after 7 wks ....... 2.9 .............................112 ..................... increased to 100mcg

5 mths later ..... 2.5 ........................... 127 ..................... increased to 150mcg

3mths later ..... 2.7 .......................... 129 .......stayed on 150mcg for 8 mths , tried 175 for 1 mth

..............................0.001 [0.02 -6] ..................freeT4 36.7 [13 -26] ... oops! .... got letter from GP !

went back to 150mcg .

3 mths later ..... 0.09 [0.02 -6] ..................free T4 28 [13 -26] ie. 115% through range

from then on, on 150mcg , TSH stayed between 0.05 and 0.2 , and fT4 wandered around between 50% and 120 % though range .

.

[jgelliss in reply to tattybogle]

Very inspiring experiences. Thank you for sharing. In my thyroid journey I learned a very big lesson is that by every dose change to wait for 6-8 weeks sometimes even longer to see how my body acclimates to the new dose changes. It does take time . Slow and steady wins the race.

[GreenhouseGal in reply to tattybogle]

Thank you! Soo much information. I love it! 😁😁🤗💛

[AFnotworked1981234]

hi and welcome to the thyroid club lol. I felt so tired and irritable at the end of the day and felt like I hadn’t slept when I got up in the morning and used to be craving a nap around 3 pm. I took a long time to get optimal dosing, up and down but for the last 3 years I haven’t changed doses and I have been through a lot my marriage ending, ex wanting full custody of the kids and my beloved dad dying but now I don’t need afternoon naps even when I work from the office hybrid worker now

[GreenhouseGal]

Guys!!! Guess what?! As of right now, almost 5 weeks in, my tsh is 0.76! 😮😮😮 (0.45-5.33) how is that possible on 50mcg? I'm excited, nonetheless!! Free t4 is 0.95 (0.61-1.24)... didn't test t3, but I'll be happy to wait a few months on this dose with that tsh! Please advise. 😄 I'm shocked! 😁🤯 Not hashi's, tpo value <1 and range 0-4. If this is optimal, I should feel good soon, right? 🥳💛

[J972 in reply to GreenhouseGal]

That is good news! Might I suggest that you make a new post? I don’t think that the members who responded to your original post will be updated on subsequent additions .

[Feuerfrei]

Can't remember what I went to the GP for. Had some tests. Said I was hypo. No surprise as my mum is. Started me on 25mcg and they left me there for ever. GP made some comment about maybe soon fel me tired, but I didn't feel topped it anything like that then. I know I had the antibodies then but no idea what my TSH or T4 was. Felt absolutely no different.

[Summerlove]

Hi GreenhouseGal

I have enjoyed reading your and everyone’s experiences it gives me hope. I was diagnosed 7 years ago. I initially presented with fatigue & anxious panic symptoms. Loosing confidence to drive, all sorts. I had never been like that before quite the opposite. My GP luckily screened me for thyroid although it was pointing to menopause. I was started on 25mcg of levothyroxine. My dry skin improved nails hair etc. I went up to 50/75mcg Levo. For a year I felt much better. But then developed gastritis lost 2 stone down to just over 7 stone. Ended up in A&E i felt so unwell. Then one day I developed double vision out of the blue. Spent 6 hours in eye hospital they couldn’t find out what that was. To this day never had a diagnosis. It resolved after 9 days thank goodness. Since then my eyes are dry and I have to use drops 3-4 hourly. Went through menopause which exacerbated symptoms and developed anxiety big time. I have had several counselling sessions which help a little. I also developed tinnitus which I understand is common. Aches and pains in back, hips, bursitis, acid reflux, nausea, fatigue cramp in calves, sleeping problems. The worst by far is the anxiety. I have been on 50mcg for 6 years so I am slowly increasing at my pace. What I have found and recommend is try to keep blood sugars stable as pre diabetes can be knocking on the door. Also my cholesterol is high but I will not be taking statins. Folate always on the low side and vit D which again common with thyroid. It is a slow journey for some but as others have said some have no problems. Oh I did go gf for 4 years but didn’t see any change and found restrictive so changed back. Each day seems to be different mentally & physically. Btw I had to retire at 55 due to my health but returned on 2 days and have managed to work for 5 years.

I wish you well in your journey