How soon did you feel the benefit of levothyroxine?

[Cuileann-6]

It's early days for me..... only day 3 of levo.... minuscule dose still.... but can anybody tell me how long is was until they started to feel the benefit. Days? Weeks? Months? I know it might take time feel fully well.... but I'm hoping to start improving soon? Thank you.... Yours Impatiently x ;o)

[miglet54]

I'm not really sure that I have after 20 years. Still not right.

[Cuileann-6 in reply to miglet54]

hi Miglet54, sorry to hear that :o( ..... I guess it's always going to be a bit of a balancing act? thanks for replying. Take Care x

[Trixie33]

You'll feel better slowly but surely over the coming days and weeks. You won't feel fully better until you are at your optimum dose but they can't give you that all at once. You'll be retested in about six weeks and your dose increased and then probably once or twice more. But hang in there, most of us get to feeling fine most of the time! 😊

[Cuileann-6 in reply to Trixie33]

Fine most of the time would be wonderful!!! I shall be patient. I am self-medicating but get advice from a private gp, plus I will test privately on a regular basis. I've been unofortunate since I've been getting slowly more ill over a matter of several years until I pretty much ground to a halt before Christmas. But I feel hopeful now....a angry that my gp's refused to believe that I had a thyroid problem, but comforted immensely by having my self-diagnosis confirmed by this forum :O) I am so grateful. Thank you Trixie33. So much. Take good care of yourself :O)

[Hidden]

I had relief from some symptoms within a month or so, but the most pronounced (for me that was vertigo and mild depression) got better slowly. It's not like things get better quickly, more like one day I was at the gym getting off the elliptic and I realized I wasn't woozy or looking like I was drunk! Seriously...that was my aha moment for that symptom. It took a while for your thyroid to get to where it is now, and seemingly getting better is about the same slow pace.

Oh! Good news? I began to laugh agin within three weeks, which was an amzing aha moment as well. It will happen for you.

[Cuileann-6 in reply to Hidden]

Really helpful ohm1!!! that totally makes sense - it's funny (no pun intended) but I have noticed already that I laugh more readily! I have quite a developed sense of humour - I'm a giggler.... but just haven't had a good belly laugh for a while!!! I find I'm seeking out comedy a bit more too.... even in such a short time :O) Thanks for being so encouraging. It is SO heartening to feel part of a community. This has given me a totally new perspective... and such hope. I have risen from the ashes of my gp washing her hands of me.... and now feel more in control and confident that I can self-medicate with everyone's help. I like how you described your progress as a series of 'aha' moments! Sweet. Look forward to them! Take Care xxx

[Hidden in reply to Cuileann-6]

Oh my, I'm so glad I could help! Laughing again was indeed my favorite part of getting things under control. All in all it took me about 9 months to get everything under control, and thankfully I have a doc that is incredibly responsive and we can communicate by protected email. This boardf has helped me a whole lot as well. Let us hear how you progress.

[Cuileann-6 in reply to Hidden]

Will do. Thanks again xxx

[kjkla85]

I think my brain fog/concentration had improved within a couple of weeks. I could have a conversation a lot easier. By 4/5 weeks I noticed the pains in my legs had improved so walking was a lot easier. Now after 9 weeks I think and a dose increase I've been out for walks and to aqua aerobics which I've now had the energy to do for months. I'm no way 100% but I'm definitely sleeping a lot better and have more energy. Good luck

[Cuileann-6 in reply to kjkla85]

Oh wow kjkla85! I'm so glad to hear of your improvement! That's amazing that you're back to exercising again. Not being mobile is a killer isn't it, as of course, that affects mood too. It's so good to hear how it was for you. What dose are you on currently.... and when do you take your meds? am - pm? thanks again :O)

[kjkla85 in reply to Cuileann-6]

I'm not sure I'm exercising lol. I did manage to go to the pool once a week although mostly used to float. Last Friday and this I did do aqua aerobics and enjoyed bouncing around in the water.

I started on 50mcg and am now on 75mcg. I take mine first thing in the morning. Hopefully for me I'm lucky that T4 may be enough. I was also vitamin d deficient and a few other vitamins were low so thanks to advice on here I've been supplementing those too so that's probably had an effect.

I've been ill since last summer and now am hoping to start back at work next month as I feel I might cope with it now hope you feel better soon.

[Cuileann-6 in reply to kjkla85]

All the best with your phasing in back to work. I'm so pleased to hear your story. Thanks again for helping me xxx

[Hidden in reply to kjkla85]

That;s wonderful news!

[SlowDragon Administrator]

Do you have your antibodies test back yet?

[Cuileann-6 in reply to SlowDragon]

Hey SlowDragon, I'm expecting them back next week. I had it done through Blue Horizon. Quite a comprehensive package.... so I am hoping to get a clearer understanding of what's going on. I still need to really get a handle on interpreting the test results... I want to be prepared! Any help truly appreciated :O)

[Kes8]

Hi,

I have been diagnosed with autoimmune thyroiditis (and coeliac) and have been type I diabetic for 26 years.

After nine months of feeling truly dreadful I was finally diagnosed after seeking help privately last Saturday (I really appreciate that other peoples journeys are far worse and take far longer).

Saw GP on Wednesday armed with consultants letter and started Levothyroxine the same day. Only on small dose to start but actually am feeling slightly better already. I know its a bit soon and maybe it's just relief that the diagnosis has been made but I do feel a bit better - nowhere near 100% but feel very hopeful.

The only negatives at the moment is the occasional pounding of my heart and my blood glucose control is proving quite tricky but have hope this will settle down. Fortunately the brilliant Endocrinologist I saw warned me of this.

Really hope you feel better soon.

[Cuileann-6 in reply to Kes8]

Hi Kes8! Thanks for taking the time to reply. It's so comforting to hear that you are feeling an improvement already. I know exactly what you mean about not knowing if it's just sheer relief at being properly diagnosed!! I hope the heart pounding settles down soon. I am self-treating, so I've had to start super slowly - half a 25mcg tablet (which I take in the morning - when do you take yours?).... I'm eager to increase but I have a heart condition, so I'm having to really listen to my body at the moment. I do hope that you continue to feel an improvement - it sounds like you already have a lot on your plate. It's so common for people to have more than one condition going on - which I guess is why it seems to take the NHS so long to get a clear diagnosis of each thing. Take Care, and thanks again :O)

[Treepie]

Some symptoms went within a few weeks: mega snoring and sleep apnoea but it was about a year before I felt reasonably OK but still some problems.Balance has much improved but that may be B12 supplement.

[Cuileann-6 in reply to Treepie]

wow - I am getting such interesting info!! I never knew of the link between Thyroid problems and snoring/sleep disordered breathing etc!! Did you really just stop snoring after treatment - I mean, that's a huge area right there of people suffering due to apnoea! That's fascinating. So glad that you have improved. Also interested to read about thyroid problems causing balance issues. I hope that your B12 treatment will help with that. I recently had a test (privately of course grrrr) for 'NON-active B12. Another thing I did not know about until recently.... that on paper B12 levels look healthy... but that say 80% of that might be non-active!!! There's so much to learn, Really appreciate you taking the time to reply Treepie. Hope you're having a good day so far. Lots of love xxx

[Treepie in reply to Cuileann-6]

Yep, still snoring but normal decibels! Was banished to another bedroom and still complained about ,that is how mega it was.Thyroid UK has a tick box list of symptoms but a much longer one is in the US " Stop the Thyroid Madness" book one and maybe on their site .Some say there can be 300 odd symptoms .The thyroid sends its hormones to every cell in the body .Most people only exhibit a few common ones.One that happened to me was the loss of the outer third of my eyebrows.

Much to learn .Do not spoil the weekend worrying!

[Cuileann-6 in reply to Treepie]

I hope you're no longer 'language's! I can believe there are hundreds of symptoms.... everybody's story is so different. I guess this is one of the reasons why it is mis-diagnosed

It.s funny about the eyebrow symptom. I have fair hair bit always had fairly thick eyebrows. Noticed last year that the outer third had thinned. Plus I've read so many accounts of balance problems. It's all making sense now! Thanks again....

[helvella Administrator]

You will probably get a wide range of answers - seems to be yet another thing that varies hugely.

I noticed my earliest doses almost immediately - slept better. (I have always taken mine at bed-time.) Was doing OK with a slow rate of increase until problems with the old Teva set me back somewhat.

When I skip my bed-time dose prior to a blood test, I noticed within a couple of hours of taking my tablet that something changes. Maybe it is slight but it I do notice. Others talk about not seeming to notice anything for days or weeks!

[Cuileann-6 in reply to helvella]

It's really interesting to me that you take your Levo at night. I hadn't thought of that, as I was thinking that, it being a stimulant, it might work against me getting to sleep - but it has actually helped with your sleep. I might try night-time dosing once I feel confident and have upped my dose a bit. I cannot believe how different I feel in just a few days. I mean, I'm still exhausted and can't walk far.... but the first thing I noticed was a kind of calm feeling in my chest - I can't really explain that lol.... and now I just feel, even though I'm not sleeping well, that I have a little more in the energy level department!

I cannot believe, and it must be a constant source of frustration and worry to you, being an administrator and so knowledgeable, that so many thousands of sufferers are being let down by their GP's. Imagine the amount of suffering, and money that could be saved if the ranges were re-assessed.... and if patients were seen as individuals, whose bodies respond differently..... I mean, someone with Vit D deficiency for example might not be totally aware, whilst others (like my good self) can hardly walk due to muscle weakness. I'm trying not to worry - but it makes me so angry that so many people are having to deal with, not only their increasing symptoms, but with recalcitrant medical 'professionals'!!!

And.... calm! :O) thanks again Helvella xxx

[helvella Administrator in reply to Cuileann-6]

It really, really is not a stimulant - like caffeine.

For a considerable range of views, from members right here, have a look at this:

healthunlocked.com/thyroidu...

Please don't put administrators on a pedestal - we really, really, are not experts - just people who hang around and try to ensure smooth running.

[Cuileann-6 in reply to helvella]

thanks Helvella! I'll look into that just now :O) I know what you mean about the pedestal construction.... but never-the-less, you are so much more aware and knowledgeable than most GP's or even Endo's. So, I appreciate your help so much... I promise not to pedestalise too much xxx

[Tarry]

About 3 weeks ....a sudden realisation that I felt my mood lifting, then symptoms gradually disappeared.

[Cuileann-6 in reply to Tarry]

Tarry, that is so good to know. It seems very different for everybody - but it's great to have a rough idea of what the time scale is. I am patient, but it's great to already be feeling the difference. I know Hypothyroidism and Vit D def, are linked, so maybe it's because I am tackling both of these - that together they are allowing my body to heal. Thanks again for replying :O)

[shaws Administrator]

When first taking thyroid hormones, it takes about six weeks at least for the initital dose to build up in our system. With gradual increases of 25mcg every six weeks or thereabouts until TSH is 1 or lower (not somewhere in range).

[Cuileann-6 in reply to shaws]

Thanks Shaws! I actually think I'm imagining it - or maybe it's the huge boost I've felt since being shown this forum but on only half a 25mcg, and only 4 days, I already can feel a slight improvement! Incredible. Thanks for your reply - this forum is SO helpful. I no longer feel insane!! :O)

[shaws Administrator in reply to Cuileann-6]

25mcg is very small initial dose. Usually it is 50 mcg with 25mcg incemental doses until you feel well. So the aim is to get your TSH to 1 or lower. With a Free T4 and Free T3 towards the upper part of the range (rarely tested for some unknown reason to me). After a couple of weeks I'd be tempted to go back to GP if symptoms start appearing and ask for an increase.

Blood tests should be the earliest possible, fasting, (you can drink water) and allow 24 hours gap between last dose and test and take it afterwards.

Always get a print-out of results with the ranges for your own records and you can post for comments. Many people do fine on levo at an optimum dose.

[Cuileann-6 in reply to shaws]

Thank you. I will do that. I will try the 25mcg dose tomorrow, as it was my decision to cut in half, as I just wasn't feeling right heart-wise, but the tightness has gone now. So helpful to know about freeT3 and freeT4. Still getting to grips with it all. I had T3 and RT3/antibodies tested with Blue Horizons. Test results next week hopefully. :O)

[SilverAvocado]

I tend to notice within a couple of weeks. Slightly more energy. And usually a few 'milestone' things like one of the posters above mentioned. For me it tends to be being able to sit up in bed more, or stand for a few seconds without immediate discomfort.

[Cuileann-6 in reply to SilverAvocado]

Thanks - that's encouraging, though it sounds like your symptoms are pretty profound. Hope you're doing ok. :O)

[ritz]

I never found any benefit just side effects stayed on it till it gave me AF after 4 years.

[Cuileann-6 in reply to ritz]

Sorry to hear that Ritz. Presumably you will have had your T3 and RT3 measured? I know some people need to take both T4 and T3 combined. Hope you're doing ok now. Best WIshes x