Hi. This is my first post here. I was diagnosed with hypothyroidism in June, and was started on 50mcg of levothyroxine. I am still completely debilitated by fatigue and unable to do my job. I’m also unable to do the other things that I enjoy, because my body just runs out of juice with any activity at all.
So I guess titration of drug therapy is a work in progress.
I guess what I’m really asking for is hope that I might eventually become myself again? Because if this is my life from now on I don’t know that I can get used to it.
Thanks in advance.
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Welcome to the club. I had the same sense of loss of self , desolation even after being diagnosed in June 2015 and put on 50mcg levothyroxine which didn’t seem to help and sometimes seemed to make things worse. . It can be long winding road that leads to the door to feeling yourself again but you may be one of the lucky ones and settle quite quickly into a simple levothyroxine only replacement regime. After 5 years or more my take away messages would be 1) establish your own private blood testing regime every 6-8 weeks taking finger prick blood samples at the same time of day/month for ongoing comparisons and covering at least free t3 free t4 and tsh all together and keep a symptom diary NHS thyroid testing is woefully inadequate and out of your control and often worse than useless, don’t bother trying to fight for something better, save your energies for getting t3 if you find you need it because that costs way more than even monthly private thyroid blood testing.
2)anytime anyone tells you t4 (levothyroxine) is practically inert and has such a delayed/long half life as to have almost no short term clinical effect and that small changes have imperceptible effects in the short term remember that your old self thyroid delivered a consistent supply of t4 over 24 hrs - never all in one dose and even 50mcg levothyroxine may be destabilising of the finely tuned thyroid metabolism
3) there may be a big debate about whether you need or should try replacement t3 as well…. Let your long term blood tests and symptom diary be your guide and before entering the lions den of t3 replacement, try splitting levothyroxine into at least 2 and potentially 4 doses, without worrying about absorption issues and current clinical guidelines for taking your daily prescription as a 6am fasted dose in entirety.
4) even if your free t3 levels as tested seem ok to others (especially doctors!)they may not be for you and if it takes so much levothyroxine every day to get your free t3 levels looking even about averagely healthy that your ft4 is clearly very high and your tsh is suppressed too far below about 1.0 you may be a candidate for t3 replacement but that this is a rollercoaster and tricky to manage and so expensive the nhs has been conditioned into saying no by using spurious clinical arguments.
5) if it seems you need t3 and haven’t tried several months of splitting levothyroxine into however many doses you need based on no more than 25mcg in any single dose to give the daily total then do that first and see how you feel. Believe me taking 4 or even 5 times 25 levothyroxine a day is a lot less problematic and challenging than taking even 2 x 5mcg t3 supplements for example. My t3 stabilised to levels that had only been obtained by direct t3 replacement simply be taking 5 x 25 levothyroxine instead of 1 x 100 mcg! If you are sensitive to levothyroxine this will be the best way to take as much as you need without causing adverse effects such as slowing the rate of t4-t3 conversion - yes too much t4 does this!
5) as you already rightly surmise titrating the optimal replacement thyroid doses is a slow process and you can expect to feel under or even over medicated until you find the optimal doses but with my experience of t4 and t3 and umpteen different doses and dose regimes over many years I’d guess that starting with split dose levothyroxine at no more than 25 a pop could avoid many of the pitfalls and perturbations right from the get go.
6) a lot of fuss and nonsense is made of optimal micronutrient supplements to help thyroid symptoms etc. Thyroid hormones are so powerful that even correcting any micronutrient deficiency will be almost unnoticeable compared to getting thyroid replacement right; with the possible exception of selenium which is a vital cofactor in t4 - t3 conversion and making the best of all that levothyroxine!but only if you are deficient. Other things like VitD and iron and B12 etc may well be significant for you in other ways but in my experience make buggar all difference to thyroid symptoms if thyroid replacement is out of whack.
Hi, I am starting to split my Levo dose in two morning and afternoon as tend to crash mid afternoon. I was very interested in your points - I wanted to ask what if the T4 is always at the low end but T3 at the top end and TSH high does it mean I do convert the T3 but why is T4 still so low?
I hope it’s ok to ask you this on the thread- as it was connected to your advice and may help others. If not I can post separately.
Hmm that’s interesting…. I could guess that you may be an especially good converter of t4-t3 or, if you still have an intact thyroid gland, the high tsh is causing the gland to deliver t3, which it does preferentially anyway and maybe that’s all yours does for some reason?…. another possibility may be that too much t4 in each dose is being sequestered into it’s bound conjugated thyroglobulin form (total T4) or otherwise deiodinated into reverse t3 …?
Anyway my inexpert speculation aside, I’d hazard to guess that splitting the dose could well increase free t4 levels for reasons above and more intuitively because natural t4 production was more evenly delivered your by your thyroid and it is therefore logical that emulating that would be better on many counts than taking 24hrs dose all at once…..
Your high TSH may simply be your body saying more T4 more T4 ….. I wonder what your t3 response would be with more T4, in theory it should self regulate to your body’s set point but I’d be careful it wasn’t responding by getting hyper levels of ft3…..?
Thank you Hashihouseman- I will get tests again soon so will be able to see what happens/changes now I am on 100 Levo. I felt better on NDT tbh but trying Levo to see as it is the generic one you can get on prescription and NDT was becoming a precarious exercise to get hold of.
Wow!!!Hashihouseman spoken from the heart and lots of trials and tribulations. It's so amazing how much we learn on our own through desperations to feel as well as possible. We can never get from Dr's what we get from one another on this Great Forum. We are so Blessed to have one another.
Hi sorry also to hijack the post by replying direct to you Hashihouseman but I REALLY wish I’d thought of splitting my Levo now! So you’re saying not to worry about taking it 1 hour from food…?
Sort of! I still manage doses to avoid meals by an hour but nothing like the overnight fasting most often prescribed. Even taking one of the doses within 30-60 mins of coffee doesn’t seem to have a significant effect. Because I’m taking it 5 times there’s an averaging of optimal and sun-optimal absorption but overall I get more from better utilisation of t4 than I lose from any absorption issues. I guess if you lost 40% of potential absorption of the entire dose taking it with a high fibre meal washed down with a milky coffee that’s significant but what I do 4-5 times a day almost certainly doesn’t lose more than 10% overall and in any case such losses could be replaced by simply increasing the overall dose. Clear as mud
Just a note of caution… the endo willlikely scoff, say it’s unnecessary blah blah…. Most of them seem indoctrinated by the paradigm that T4 has such a long half life and is mediated more slowly than t3 that you could even take a weeks worth all at once (clinical trials have debunked that theory ). I consult the senior endo at my local hospital trust which is a teaching hospital for the university medical school, and she agreed it could do no harm but that it shouldn’t make any difference for the better either- she’s suggesting placebo!!! However, sadly you can’t get an open minded debate between equal adults with enough time to thrash it out with them as a patient so she is deaf to my arguments not least including the FACT that the half life of T4 in the plasma (blood) compartment, which accounts for around half total T4 is much more like T3! This could well explain why there can be noticeable effects from T4 changes within 48 hrs and that even small doses will have a significant effect if your system is close to optimal ie the nearer you get to being just right the more sensitive it is and the less it takes to go over or under our individual very narrow optimum. So it will be very interesting to hear what your endo may say about it ha ha I suppose what I’m saying is unless they come up with a very clear evidenced reason for not doing it then don’t take any bloody notice of them ha ha!
Right. Thank you. That makes sense. I can feel a T4 increase on the first day I take it. I feel well and slightly euphoric for about a week until it fizzles out. I once, ages ago, thought I’d forgotten my dose of 50mcg so took it in the afternoon. Turns out I hadn’t forgotten it - but the extra made me feel better for a few days. I was taking 100 mcg when I saw my Endo and having pain symptoms. Endo didn’t think the pain hypo related and was a bit baffled as to what to do with me. My blood results were pretty okay. Anyway in his bafflement he offered me a T3 trial which of course I took up. I’m not as bad as I was (and the pain disappeared) but I’m not right (mainly in the head!) and feel ‘medicated’ all the time if that makes any sense? I’ve got a blood test due soon, then the Endo appointment. Think I’ll hang on as I am for the blood test and then start experimenting. It may be that I don’t need the T3 at all which would be lovely (and much cheaper). Endo will probably just go along with it - he seems happy to let me figure it out. Thank you so much for this! 😊
Yes my experience with with T3 sounds quite similar, it certainly helped and felt essential when T4 was not being replaced by the right regime but like you I felt okay yet weirdly medicated. So, although it was a bit of a hike to get off the T3 completely, if for no other reason than being much simpler to manage come the apocalypse (or long stays in tropical climes, when it will be hard enough to get levothyroxine let alone liothyronine….. however, having come off it and used to feeling a t3 level of alertness (possibly unnecessarily so) the split dosing levothyroxine regime seems to work well enough and taking it as if my thyroid was producing it feels much more natural and seems to have done away with the need for a T3 boost every day or twice a day ha ha
You’ll feel better eventually and certainly better than pre diagnosis as least you now know what you’re dealing with. This forum has been my saviour along the way. You will go backwards and forwards until you settle on the right dose but there’s no rushing the process unfortunately. Best of luck to you
Patience is the key I’m afraid. But make sure you READ up on as much info and documents as you can on treatment paths, blood levels and medications, as you’ll need to get used to challenging ignorance in the medical profession.
Secondly, own your own health. Do not wait for your GP or anyone else to manage your condition for you. you must view this as your problem, and through research and proactivity, you’ll be the one to have the best impact on it. I know it sounds odd but that’s the reality.
Lastly, if T4 doesn’t return you to health, demand endocrinologist referral for T3. And if that doesn’t happen or T3 doesn’t work, try Natural Desiccated Thtroid -NDT - as it changed my life. But you’ll need to go private. Never say you can’t afford it as its the price of a weekly food shop for most people. The NHS is no longer able to manage chronic conditions like hashimotos etc.
Visit us everyday and read the articles as you’ll find support, empathy and practical help and knowledge.
50mcg is only a starter dose, it may take a while to get the optimal medication for you.
You should ask for copies of your results with ranges from the surgery reception. You may be able to access them on line.
If you post those with the numbers in brackets (the range) people will comment.
You should get a blood test every 6-8 weeks and the dose be raised until ideally your TSH is between 0.2 and 0.5 and the freeT4 and free T3 are in the top third of the range. Often only TSH Is tested which is not very good for optimising medication. You can get private tests that are more comprehensive if your surgery is only doing rock bottom basic testing. It took 9 months for me on Levothyroxine to get the TSH down but some relatives have been much quicker to get results.
Even on Levothyroxine I still felt ill but there are other thyroid hormone treatments you can try if you are in the small minority of unfortunates who don’t get fully better on Levothyroxine.
There is a formula based on weight for a rough idea of what dose of Levothyroxine you may ultimately need, this can vary over time hence annual blood tests once you are in the correct dose for you. Hopefully someone will post it and you can get a rough idea of what your final dose may look like. It comes from NICE guidance so hard for a GP to refuse to follow it if you are not getting good care and you bring it to their attention. Most people need between 125 and 200mcg daily. The improvements can be quite sudden once you get around the right dose.
Hope that helps, hang on in there, you’re in the best place for support on this forum, it’s a life saver!
I totally understand how you feel, I was finally diagnosed in Nov last year after at least 20 years of suffering fatigue , brain fog , and other symptoms.
I am pleased to say that as my Levothiroxine doses get increased I have whole weeks of feeling normal. I am on 75 mg and am due to be increased to 100 mg soon.
I have gone gluten free and cut down on dairy, which has helped.
As your meds get increased hopefully you will start to feel better.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Have you had blood retested yet?
50mcg levothyroxine is only a starter dose
Likely to need at least 2 further increases in levothyroxine over coming months
What were your thyroid results BEFORE starting on levothyroxine?
Have you had thyroid antibodies or vitamin levels tested yet?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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)
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Gosh, when I saw your question I thought somehow or another my first question in here had come up again. That was exactly what I asked. I was hyperactive - I had Graves’ disease- and yes I do feel normal now. I didn’t think it would ever happen.
You have been given loads of really good advice. Hyper isn’t the same as being hypo and I think in a way it is harder for people who are hypo but basically keep records of all of your blood tests and link them to whatever dose of levo you are taking - that way you will see when you feel best.
Always ask for (and make sure you get) your test results. Make sure you get your folates, ferritin, vitamins D and B12 tested as well and be sure that they are well up in their ranges. Don’t accept comments like ‘you’re within the range’ ‘ your results are fine’ etc. If you don’t feel well they can’t be ‘fine’ for you.
You may have to pay and get some of them done privately (I did). I found asking for the last four and even getting T3 tested was more like getting blood out of a stone so I gave up with my doctors and just used home fingerpick tests from Medichecks.
I also went totally gluten free which I think helped but some people don’t find that.
Take an active part in your treatment - don’t just let your doctors ‘do’ it to you. Eat well, get exercise and be kind to yourself in general.
I should have added thats it’s a slow bus8ness - or it was in my case. There I was so hyper I was off the scale, feeling incredibly ill, I was given a consultation three months ahead and some carbimazole to take. I was shocked that I could be so ill and have to wait so long to see anyone. As it was the consultant wrote to me after a blood test at four weeks and told me to get more carbimazole and double my dose. Unfortunately I didn’t have any further blood tests and by the time the consultation happened two months later I had become really hypo - that’s how I know that hypo is no fun either - just a different type of no fun to being hyper so be prepared - there doesn’t seem to be any quick fix for thyroid problems - but you will get there in the end.
If I'd just been diagnosed and then read what MIGHT lie ahead of me I would be overwhelmed and very apprehensive!!
Others have offered excellent advice but it's wise to remember that the majority diagnosed with hypothyroidism respond well to levothyroxine and live well. Initially, and before a therapeutic dose is reached, you will feel exhausted with several other symptoms. Sadly there is no quick remedy ( think headache/paracetamol) it takes time to establish the correct dose and for that dose to settle in the body....patience is vital! Hopefully this will be you too!
Take your levo away from food and drinks and regularly at the same time each day. This is for life and it becomes routine...just like brushing your teeth!!
Unfortunately a cohort of patients do not respond well to levothyroxine and further treatment is required but initially I would concentrate on testing every 6/8 weeks and titrating levo until you feel well again. That is possibly all you will need to do.
Those of us who remain unwell do so for various reasons amongst them reacting to excipients in the tablets, thyroid autoimmune disease/Hashimoto's, poor T4 to T3 conversion and rarely thyroid hormone resistance.
I have the latter condition, I became increasingly unwell over decades until I could barely function and medics had no answers. Thankfully I found this forum and the real thyroid experts, read extensively and found the answer and the way to treat it...albeit in my early 70s! I guess you are very much younger and fortunately here in a helpful place!
To answer your question...of course you can feel well again and hopefully the route, though perhaps slow, is straightforward. If not we are all here to help you, we have the personal experience that medics lack and we understand how challenging being hypothyroid can be. Sadly current NHS thyroid treatment is a disgrace which is why over 100,000 patients have arrived here looking for ( and receiving) the advice they need to recover.
Stay positive, patient and determined to feel better. ....more levothyroxine is hopefully all you need. Please keep us posted.
I was diagnosed after fainting, once at work in front of my colleagues (argh) and once when I was alone at home. Yet I’ve been told that fainting is nothing to do with my hypothyroidism. I saw my GP after being in hospital overnight after my first faint. They requested TFT when they did my bloods, which came back at 11 (subclinical). I was a bit naughty the second time I fainted. I knew I was ‘sub clinical’ on the blood test my GP did earlier, so I ticked the ‘thyroid’ box on the blood form in A+E, when the doctors were only requesting FBC and U+E. Had I not done that, I would have waited longer for diagnosis.
Welcome to our forum and you will get support and help from members on this forum as the majority have found it difficult to either get diagnosed or to have an optimum dose of thyroid hormone replacements that enable health to recover - of course it is for a lifetime..
I would copy/paste your first post above into your Profile as you've only put your name. This enables members in future to click on your name to get some background by reading your profile and you don't need to repeat your journey to be diagnosed. Click on your name above and it will take you to your own 'page'.
Levothyroxine is also called T4. It is an inactive thyroid hormone and has to convert to Liothyonine (T3) and T3 is the 'active' thyroid hormone needed in our millions of T3 receptor cells - brain and heart contain the most.
GPs don't usually do a 'Full Thyroid Function Test' and the majority don't seem to have the knowledge our 'old-fashioned' doctors had as there were no blood tests then and people were diagnosed upon their clinical symptoms alone and prescribed NDT - the very first replacement given since 1892. It was made from animals' thyroid glands so was more conducive to the human body - it contains all of the hormones a healthy thyroid gland would do. (NDTs - natural dessicated thyroid hrmones)
Unfortunately 'those who we would expect to more knowledgeable' have removed this from being prescribed despite its proven safety and the fact that it restored many lives by symptoms being resolved. This is the method for blood tests:-
Always get the earliest blood draw - (book weeks ahead). It is a fasting test and do not take thyroid hormones before but take afterwards.
Take hormones with one full glass of water and wait an hour before eating.
Ask GP to test B12, Vit D, iron, ferritin and folate too.
Always get a print-out of your results for your own records. If you have a query you can post results for comments.
Thank you so much everyone. I feel a little more hopeful now, and I’m holding on to the possibility of getting something like my life back. At 53, living alone, I’m used to being proactive to maintain a social life and to keep up my cycling hobby. Now I need to be proactive about my poor worn out thyroid as well. Does anyone else get overwhelming sugar cravings?
Hi It is really hard at first to get your head around the whole thing but many many people do feel better- plenty of people feel better when they take the right amount of thyroid hormone. Going gluten free helped me with brain fog. It’s hard as GP advice can be very hard to come by so this forum will help you make sense of what is happening.
I was diagnosed in 2013 and eventually had to give up full time work but then I managed to do private tuition and a part time PHd - I used NDT for the first few years and it definitely helped. It all depends how far along you are with it abs if it’s in the early stages then it’s less severe I imagine. Yes salt and sugar cravings are part of it too. Balancing blood sugar also helps a lot. Take care. You will find some peace through searching.
Strength for you. I get sugar cravings when I have something sweet. I find that eating sweets creates more cravings for sweets. Keep Strong and Positive. You'll Get There.
I did. Sometimes still do. I was buying chocolate like crazy before diagnosis which was not like me (low carb diet as a lifestyle). I thought maybe I was depressed or something but that didn’t seem quite right. I think it’s your head telling you that you need energy but then eating the sugar doesn’t actually give you the energy you expect…! I’m 56 live alone and try to maintain a very demanding job. Diagnosed last November. This place here keeps me sane so please keep reading and posting especially if you need to talk because it really really helps. I sometimes feel quite lonely with this so I appreciate everyone here very much. Take care and good luck with your recovery.
You've had lots of good advice, but two important things have been left out as far as I can see.
1) If you take any supplements of any kind check to see if they include biotin, which is one of the B vitamins. This is usually found in B Complex supplements, also those intended to help with hair and nails, plus possibly others as well. Biotin can corrupt test results, and must be avoided for 2 - 3 days before testing for anything. If you take a very high dose then avoid taking it for longer - say, 5 - 7 days.
The reasons for this are given in the following threads :
2) The other thing that nobody else has mentioned is that not all Levo tablets are the same, and it makes a difference as to what people can tolerate.
So, when you keep records of your blood test results, make sure to also record and score your symptoms, and also record the brand of Levo you've been taking, as well as your dose.
To be 100% sure of the maker of your Levo tablets don't look at the box. Instead, look at the blister pack inside the box. Some pharmacies will use their own brand names on the box, but the maker might well be different - and the maker on the blister pack is the one to record.
Note that for people who are lactose-intolerant the only available lactose-free Levo tablets distributed in the UK are :
Aristo 100mcg
Teva All dose sizes
Above info taken from helvella 's very useful document :
If you find that one particular brand of Levo gives you side effects then tell your pharmacy and ask not to be dispensed those tablets again. Be aware that many pharmacies are NOT careful about this, so always check before leaving the counter that you have been dispensed the make that you wanted.
Yes, yes you will feel normal again but in the meantime don’t bear yourself up as if you have any control over these physical symptoms. You’ve been on a starter dose since June. You probably should already be on 100mcg by now at the very least.
Unfortunately atm there are no NHS blood tests (shortage, only cancer patients ect offered) so you probably wouldn’t get a test even if you asked. You should be getting blood tests every 6-8wks untill your symtoms are resolved and you are in the optimal dose.
So atm you can either try for a private blood test or have a phonexall with your GP describe your symptoms, say that you understand about the blood test shortage but that you want to increase to 75mcg and in 6wks time the blood tests crisis should be over and you can get tested in Oct.
I know you feel rubbish but you have to be pushy and confident.
I’m menopausal as well, I understand that’s a confounding factor. Which makes sense, as all that endocrine stuff is interdependent. But it does mean I juggle hot flushes with feeling freezing cold! In August! So getting ready to meet my Mum for lunch (is there a forum for THAT?!) meant putting the heating on for my bath, then being unable to put my makeup on because my face is dripping with sweat.but luckily I have a sense of humor.
It's true that hormones are inter-dependent. But doctors use menopause as an excuse not to test or treat anything if they think they can get away with it. Lots of us are told that all we need is anti-depressants.
I have been anxious and depressed for a large part of my life. Over the 1990s and the noughties I was prescribed four different anti-depressants, and they did absolutely nothing for my depression or my anxiety.
Then I found out about thyroid and nutrients.
It turns out that low iron and ferritin make me anxious. When I improved them by myself (doctors think "in range" is all that is needed and I wanted optimal) I discovered that my anxiety disappeared and my depression dramatically reduced.
Other people have found that improving their B12 and/or folate has been the key for them in terms of depression/anxiety.
Others have found that improving vitamin D improves aches and pains.
Others find that improving T3 is the key.
Sadly, doctors are taught little or nothing about the importance of nutrients (with some very rare exceptions, like getting ferritin into range if the patient is anaemic - this won't make the patient well though). They are also told that T3 is unimportant, which is quite sickening from a patient point of view.
don't worry too much , even speaking as someone who never got 100% better, and never fully got my 'old self' back . I can assure you , you will definitely be feeling a darn sight better in a while.
It 's just that finding the right dose of Levo is a bit like playing 'Snakes and Ladders'
~ At diagnosis i was only functioning at about 30% of my 'usual' self .
~ I was improved for only a few weeks on 50mcg , then felt just as crap again .
~ Improved for a couple of months on 100mcg, then crap again for a couple of months, (but not as crap as previously.)
~ Improved to about 80% of my old self for about 8 months on150mcg.
Then felt a bit 'flat' again , so tried 175 , but it didn't help so ended up on 150mcg for 10 yrs. and only being 75/ 80% of my previous self...... So i adapted to that way of life .
What might have helped me more ......
~ If i had my time again i 'd come here 17 yrs earlier and not feel so alone or like i was moaning about nothing.. which is how Society in general and Doctors in particular ,always make you feel if you have a 'treated' thyroid problem but still don't function well.
(believing there was 'nothing much wrong with me and i was just being a wimp' did me a lot of damage in the self esteem department.)
~ I'd stick to my guns when i found by accident that splitting Levo into 2 smaller doses seemed to improve how i felt later in the late afternoon...... as it was, i talked myself out of it , because it 'shouldn't make any difference' ... I've started doing it again nowadays , and my TSH has risen a little (it was VERY low) , meaning in theory i now get more T3 (the active one) out of the Levo i do take.
~ I'd not accept any GP's opinion that this, that. or the other "can't be a thyroid related symptom" .. the more you learn , the more you realise that there are very few systems in the body that are NOT affected by thyroid hormone levels, and that if you take an infinitely variable, highly individual ,self compensating control system, which gives rapidly adjusted varying amounts of 'active'(T3) and 'long life' (T4) hormones, in response to varying requirements, in varying environments.... and you replace it with one big daily dump of an unchanging dose of only the 'long life' one, and just cross your fingers and hope that whatever level of the 'active one' this provides you with , will be a good enough average for the varied needs of different tissues .. like the brain , heart or muscles .... well ..... you can understand why some bit's of you might NOT work optimally any more .
So .... once you've been on a decent dose of Levo (around 1.6mcg /Kg) for a few months and you TSH is around 1 (where the majority of healthy people have theirs), if you don't feel better than 80% of 'the old you' ...... don't just accept it and go away quietly in shame for 17 yrs like i did ..... keep looking, learning, and asking the Doctor awkward questions;
~ Will you test my vitamin levels ?
~ If not why not ?
~ How do you know my T3 level is 'good enough' if you don't test it?
~ How do you know what 'good enough for me' is if you don't know what my personal level was before was ill?
~ Even if my blood level of T3 is 'good enough' ,can you show me that all of my tissues are getting enough T3 at a cellular level ? ( ..... no they can't , without chopping you up first, but studies on Rats show that Levo alone does not restore T3 levels equally in all tissues )
~ Will you refer me to an endocrinologist if you can't help me further with just Levo ~ i'd like to try adding some T3 to it to see if it helps ?
~ Just because "all your other patients on Levo are doing fine" and not making a fuss .. how do you know i'm not one of the 15% (ish , a now commonly acknowledged minority who are mentioned in the latest NICE guidelines) who don't do so well on Levo alone .. and if i am one of them .. what do you propose to do to try and help me ?
If you want a real life example of getting better once you've learned what's what, and how to get the GP's move treatment in the right direction at an appropriate speed.. healthunlocked.com/user/cha... this person came here at the start of this year wondering the same as you , and is now doing significantly better .
Agree with Hashihouseman, and Hashifedup. The short answer is Yes! you will find your way back to health, and feel normal again.
As has been mentioned however, you will need to find your own way. I'm so sorry to have to say, as we all have had to do. This is a great forum, and key to finding your way.
I am in the US - but it doesn't matter where we are in the world. Hashimotos is on the rise (especially in women) and Dr.s either can't or won't do much to help us - other than T4. T3 is powerful, and if and when you decide to add it to the T4, remember to go low and slow at first, for you will most likely have to experiment. The glandulars (desiccated bovine or porcine thyroid glands) are the weakest (weaker than pharmaceutical) and easiest to buy without a prescription. Nevertheless, they are still powerful - and you will find the safe dose for you if you go slow in incremental dosage increases. If you can find a Dr. who will help you that is the safest of all.
Most of all you must educate yourself on you, and how you happened to develop Hashimotos (the most common type of hypothyroidism). That is not easy - for many of us develop a bit of on again, off again mild depression (a roller coaster!) and doing research takes energy. When you feel well enough - do your best to begin.
Dr. Isabella Wentz, Dr. Alan Christianson, and Dr. Lowe are some excellent online informational resources. Dr. Lowe is no longer with us, but the organization he founded is still helping thousands and has been for decades (I learned about it here!) They all have vitamins, glandulars, etc. to sell - but they educate for free. Main stream medical will tell you that once the auto-immune process has been triggered (Hashimotos) that there is very little to be done but medicate. (I used to believe that too). Dr. Wentz will tell you about eating cleanly and balancing the flora and fauna in the gut. Dr. Christianson will tell you about balancing iodine (easy to get too much in today's modern diet) and healing the liver. Dr. Lowe - oh my, perhaps my favorite of all - you can find no end to the education available there. Much to say about T3.
It took me 25 - 30 years to find this forum / people like me that had been battling hasimoto's with varying degrees of success. Little by little, I found my way. (I also found a Dr. who knew how inept main stream medical is, and bravely stepped outside of the lines to help). With every little bit of knowledge applied I felt better. Yes, I found some things that did not work for me, as you most likely, will. Listen to your body. It will tell you. (Dr. Lowe said that's how he treats - not by blood tests alone, but by improved health, energy levels, etc.)
I am now mostly medicine free, thyroid is working very close to normal. Paying strict attention to eating clean, reducing iodine (not possible nor desirable to eliminate iodine). The 30 day iodine reduction diet suggested by Dr. Christianson was the final piece of the puzzle for me. Most all hashimoto's symptoms resolved. Dr. Christianson (and other experts) also advise that 25% of all Hashimoto's patients find resolution of symptoms without changing anything at all...... some just heal naturally, eventually. (sometimes decades) I have found that all of the above is true for some of us. Which works for each individual sufferer? That's what we must each work out. It can be a long road, and yet, so much more is now known (and right here on this site) than even 10 or 15 years ago.
Many times, hashimoto's occurs after pregnancy. For other's it occurs after a serious viral infection. And we are all continually bombarded by pollution, pesticides, chemicals (even in cosmetics!), etc. Some of us are genetically predisposed to the slow elimination of toxins. Any / all of these have been suspected as triggers to auto-immune thyroid disease.
Keep tune in here. Know that you will feel better, as soon as you know what to do. Medicine is necessary no matter which protocols you try - at least while you are healing. There is much hope and people to help. When you find what works for you - be sure to share it. It might work for someone else.
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