Hi everyone I have asked this question before but here i am again!I have been on Thyroxine for around 8yrs due to Interferon causing my thyroid to become very overactive at first then becoming underactive!
The question i would like to ask is i have read that if your thyroid numbers are normal then you could possibly come off Thyroxine!
I take Aristo 100Mcg daily but over the years have developed osteoporosis on my hips and spine constant fatigue hair loss and joint pain!
I actually think Thyroxine is the culprit of all of these symptoms!
I did read online about some doctors saying that some people can actually come off Thyroxine even possibly people with immune related thyroid issues.
I was wondering if anyone has attempted to this long-term through changing their diet!
I no longer want to take this medication as I feel it actually makes me feel worse so stopped for the last week..I feel better already!
My constipation has went and I just feel that I could give this a go to see if my thyroid might start to produce on it's own after a period of time!
Anyone had any luck trying this?
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I understand that you posted a similar question a year ago ballie52 and Lalatoot and others cautioned that stopping thyroid medication can cause massive issues for your health.
Have you had improvements since swapping from your previous Teva brand?
I would advise retesting thyroid levels and key vitamins and posting results on the forum for further advice and support.
Thankyou for your response BuddyYes I went from Teva to Aristo brand and have been on it for 6mths but TBH I feel just the same!
My thyroid was tested recently and came back normal range but I still have issues on Thyroxine that I feel could be related to it!
Before I took Thyroxine I had none of these issues plus just maybe because my problem was induced by Interferon then maybe my thyroid might actually make it's own hormones now if I'm not artificially stimulating it!
Yes I understand it might not be the case but think it could be worth trying for a few mths and test regular afterwards to make sure all is well.
So many of us have fallen into the trap of thinking ‘normal range’ is sufficient to improve our health. It simply isn’t the case for many, many members. Optimal thyroid medication and optimal levels of key thyroid vitamins (ferritin, folate, vit D and B12) are so important.
I would first re test TSH. FT3 and FT4 plus key vitamins and post results in a new post.
My thyroid was tested recently and came back normal range but I still have issues on Thyroxine that I feel could be related to it!
Hello bailie
If you include when latest test was with the results and also ranges, that may give a better insight into the reason you don’t feel truly well
I can’t comment but you’ll get some responses from those on here with lots of knowledge and experience because just stopping your thyroid replacement without first understanding what could happen without it or why you might be feeling unwell, is not a great idea
In some case where the thyroid is not damaged people can have short term hypothyroidism and come off levothyroxine. In this case I would suggest taking it slowly as the thyroid will need a long time to recover. As a start you should have TSH, fT3 and fT4 tested and then retest every e.g. three months until you are no longer taking levothyroxine.
When you stop taking levothyroxine TSH will rise, this will lead to more T3 and T4 from the thyroid (if it is working) and increased T4 to T3 conversion. This can be a short term effect. If the thyroid is damaged T4 levels will fall over the coming weeks and you will be hypothyroid. If the thyroid is healthy (and the pituitary secreting sufficient TSH) you should be able to come off levothyroxine but it may take a long time.
You need to know your TSH, fT3 and fT4 now and again after you have reduced your dose for four to six weeks.
Some of your symptoms may be due to insufficient thyroid hormone and you may need some T3. Another reason to measure TSH, fT3 and fT4.
I assume your doctor has checked your vitamin D levels as regards your osteoporosis and perhaps also PTH. I would assume the osteoporosis is not due to levothyroxine until all other possible causes have been elimnated or your blood tests show excess hormone.
Thanks Jim I just want to give it a go and see if my natural hormones kick in when not stimulated by the drugs!Before I was on Thyroxine I felt great and now I feel constantly tired hair loss joint pains and weight gain!
Because interferon was the cause I'm curious to find out if I might be able to stop stimulating this thyroid and try and let it produce it's own hormones!
At a recent blood test it was a normal reading on Thyroxine so hoping I can give this a go obviously with testing regularly to make sure all is well!
I think it's far more likely that you are under treated or a poor converter. You really need to get your test results. Being in range is not optimal.. It maybe that you would tolerate NDT better or you need liothyronine adding in. Your symptoms fir with insufficient treatment.Coming off them may initially make you feel better because your adrenal glands kick in and also as said before if your thyroid still works partly the high TSH enabled it yo temporarily to kick out a bit more thyroid hormones.... However it can't provide sufficient and once the thyroid levels drop as you no longer supporting your thyroid with levothyroxine and your adrenals tire you roll eventually feel really poorly.
You'd do better to look at what you are taking and look at whether you need an increase or T3 support.
I too feel unhelped by levo barring vertigo ceasing ( my numbers are same as when unmedicated taking 125 levo the numbers are like in stone T4 always good and T3 lower section )
Have you ever had your thyroid antibodies checked? I was reading about Interferon causing autoimmune hypothyroidism in the forms of either Graves or Hashimoto's.
You could also get a thyroid ultrasound to check the condition of your thyroid.
As has been said before when you have asked this same question, you may feel better for a few weeks and then the awful hypo symptoms will hit you hard.
A better way of dealing with the issue of remaining symptoms is to get private bloods done for TSH, FT4 & FT3 & also ferritin, folate, B12 & d3.
You have been hypo for quite a while now and likely to have low levels of these vitamins which will mean you have symptoms from those alone & also your thyroid hormone cannot work properly.
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
I've tried it both with deliberate intention and also because of being at my wits end with side effects from levothyroxine.
At first I always feel great, really good. Constipation disappears, weight seems to fly off. I will also say my face never looks the same taking meds, even when numbers are good my face is a bit puffy, and when I come off them I start to see my old averagely pretty face, instead of this current one I don't recognise. It's so nice!
And then after several weeks or months it starts to go downhill and I become badly hypothyroid. The first couple times I came off my meds the resulting crash was so bad it took months to recover. It was like I had never taken any thyroid meds before. I also noticed that I don't seem to take as long to get deeply hypothyroid if I come off meds now. And that's interesting, I wonder if my thyroid is atrophying.
I take a ton of supplements, but none of that prevents the downslide or helps me maintain healthy thyroid levels when I come off levo. So I am sceptical about getting by with nutrition to maintain thyroid equilibrium. That said, I definitely have gut issues, perhaps it would be different with an efficient digestive system to adequately extract nutrition from food, I don't know.
I think you should try some T3 or switch to NDT rather than try and wean off. That said I am somewhat hypocritical having tried it several times myself. But I caution you to spare you.
Hi bantam ..yes the Interferon was the reason!..it went crazy overactive and I lost so much weight then it started to go very underactive and they treated it with Thyroxine!I was told my thyroid might improve after Interferon but they kept me on it for the last 8yrs!
Now I'm feeling the results of all of this hence the mad idea of possibly stopping for good..but after reading all comments it scares me!
Going to chat to my GP if possible about why I'm feeling the way I do right now and ask for a full Thyroid test not just the TSH
I did read online about some doctors saying that some people can actually come off Thyroxine even possibly people with immune related thyroid issues.
And some doctors talk out of the back of their hats! I think it's more wishful thinking than fact, because they do hate treating hypo.
I have Hashi's - autoimmune thyroiditis. And, due to certain circumstances, I did come off my thyroid hormone replacement (T3 mono-therapy) for six months. And, at first, I did feel much better. But, eventually, I was forced back on to it again. And that is something that happens to most people.
The thing with autoimmune thyroiditis is that when coming down from a 'hyper' Hashi's swing, you can have an extended period of euthyroidism. This is when people start thinking they were mis-diagnosed, or they'd cured their Hashi's, but it doesn't last forever.
Sounds to me like you're just under-dosed, and need an increase. 100 mcg levo is only a small dose. Most hypos need more than that. And, perhaps you're a poor converter, and need some T3 added to your levo. But to find that out, you need full thyroid testing. I have never heard of levo causing osteoporosis - unless you take a lot too much of it. But, in and of itself, it's only the same as the hormone your thyroid would make if it could. It's not a drug.
As for diet, well, people expect too much of 'diets'. Obviously a healthy diet is necessary for good health, but even the best diet can't work miracles. And, if your thyroid is damaged in any way, it would take a miracle to get it working again because thyroids can't regenerate.
So, you've already stopped your levo? Bit late to test now, then. You have to be on a steady amout - or none at all - for at least six weeks to get useful test results. But, if you want to stick it out for six weeks, and retest, it won't kill you. You might feel pretty sick by the end of those six weeks but at least the test will let you know where you are. Just be prepared to go straight back onto levo, starting from the beginning again, and working back up slowly to where you are now - and probably beyond!
Was it Hippocrates who said 'Let food be thy medicine' or some such? I hear this quoted often when people declare themselves to be chronically or incurably ill.
It is often attributed to Hippocrates but it has not been found to be a direct quote from his writings. Hippocrates did write about diet and how some foods are beneficial and other foods can have bad effects. Sorry to say that ever since I saw his name as Hippo Crates, I've never been able to think of him or his work in the same way!
For thyroid hormones much will depend on how damaged a thyroid is. No amount of dietary changes can replace the hormones that a partially or totally destroyed thyroid can no longer make. So the question boils down to how permanently damaged is my thyroid? jimh111 has given really sound advice on how to taper levo and monitor progress for anyone wishing to see if their thyroid can function enough to provide adequate hormone levels by itself. If I was to try giving up levo again I would follow his suggestions. But having said that I'm not going to try again as I got my answer last time - my TSH was in the 50s and ft4 and ft3 under range after 3 months of a daily dose of 25mcg levo....I never managed even to taper off the last 25mcg.
That makes sense. But I often see people saying online that people can treat thyroid disease with food alone. But as said by Lalatoot, in those for whom this works, they must still have fairly intact thyroids that haven't atrophied much yet. Unfortunately you don't get that nuance and it is trotted out that you can stop meds and be well.
Well, you know the old adage: you can't believe everything you read on the internet! And, who said it really works, anyway? You don't get to catch up with these people five, ten, twenty years down the line. If their hypo comes back, not many are going to shout about it. Just stopping your levo and having euthyroid labs for a while doesn't mean you're cured - especially not if you have Hashi's. And, with Hashi's you can have a period of euthyroidism when coming down from a Hashi's 'hyper' phase. It can be quite a long period. And that's when people start claiming they've cured their Hashi's by whatever method.
With most things, to get a cure, you have to reverse the cause. But, with thyroid, even if your hypothyroidism was caused by iodine deficiency (inadequate diet) just raising your iodine level won't always cure it. It's just not that simple.
As I said in a reply below I tapered down to 25mcg daily. Felt great at first. Never got to taper down further though for after 3 months on the 25mcg my TSH was in the 50s and ft4 and ft3 were below range. For the sake of clarity I started tapering my dose in the January and was down to 25mcg daily by the end of July and feeling good. By the end of October I was a wreck!
Thanks everyone for your comments!We shall see how it goes!
Obviously being on only 100 of Thyroxine and getting normal bloods back gives me hope that my thyroid is producing some hormone but coming off could it produce more natural hormone is something I would like to try!
TBH the higher dose makes me hyper and causes palpitations as I was on a higher dose at some point!
Everyone is different i suppose with different causes of thyroid issues!
Mine being caused by Interferon i was told after stopping it might start to function again but never really stopped to even try as I was frightened to come off the Thyroxine..8yrs later I hope I can stop this medication once and for all and just maybe I might start to feel just a wee bit better than I do on it!
The reason you had 'normal' test results was because you were taking Levo. Normal results actually dont even mean anything much, they certainly often dont relate to how we feel.
Recommend retesting thyroid in 6 weeks, also full vitamin testing - ferritin, folate, B12 & d3.
I think we all wish you luck ballie52—this is a subject that comes up from time to time so you’re not alone in thinking about it.
The usual tale is that nearly everyone who stops cold turkey feels quite a lot better within a few days. After a couple of weeks however, things generally start to go downhill and then suddenly, you may feel like you’ve taken a dive off a cliff.
However, there are exceptions to every rule and I’d be genuinely over the moon for you if this works out. If it does, please come back and tell us about it.
Out of interest, what were your results on 100mcg levothyroxine?
Well, it was “in range”, which is all many doctors care. But if that’s the only thyroid blood test you had, it’s impossible to tell whether you were on enough levothyroxine. For that, you need the FT4 and FT3 levels. Many find that their TSH needs to drop below 1.0 before they find a dosage more suited to them. So at a guess, you were probably slightly undermedicated.
However, there’s good news here in that your TSH was over 1.0, which means your pituitary is more likely to be able to respond (at least partially) to a drop in circulating thyroid hormones and give your thyroid the necessary kick to get it producing thyroid hormones of its own.
Here’s hoping. Please make sure you see your doctor within the next couple of weeks to get some thyroid blood tests done. It might be best to tell them what you’ve done so that they can support you.
Edited to add—I’ve just seen your reply to SlowDragon. No two ways about it, it’s a bit of a risk but as you’ve pointed out, the original issue was taking Interferon and not an underlying condition like autoimmune thyroid disease. I’ve got mixed feelings on this one (you’ll have gathered that we’re all a bit nervous for you). Did you talk to your doctor about trying to come off it? Just realised we didn’t ask!
Thanks for the feedback Slow dragon They only Test TSH in the UK mine being 1.63 before I stopped my Thyroxine...to be honest now after reading the comments I'm starting to worry!
I wanted to try coming off before but changed my mind after posting about it before and getting a wee bit frightened of what possibly might be the outcome so here I am again hating this Thyroxine and hoping I can get off it!
Nothing positive since I started this Thyroxine journey at all!
Could it be other causes other than Thyroxine who knows but it definitely makes me feel totally not me!
I appreciate everyone's comments and I'm confused after being convinced that this could maybe work coming off!
Maybe need another rethink again after reading some others trying and it not ending well!
2nd time ….year later …..similar symptoms but much more extreme and recovery longer
3rd (and last time) ….struggling to breathe, couldn’t eat, dramatic weight loss, bed bound. So ill was sent for testing for MS, pituitary tumour, motor neurone, etc
Took 9 months before I could recover enough to walk slowly to end of road and back
I know now that I felt dreadful on levothyroxine because I wasn’t on high enough dose (was only on 88mcg) and terrible vitamin levels as result…..and as hashimoto’s, with undiagnosed gluten and dairy intolerance
More on my profile
Each time I stopped levothyroxine, I initially felt noticeably better for about 9-10 days…..before crashing
As Ft4 level drops (levothyroxine) conversion of Ft4 to Ft3 improves……until there’s no Ft4 left …..then crash
It then takes at least 10 days to get levothyroxine back into cells once you restart taking it
Ballie..... I hope you will investigate further. If on a 100mcg your TSH is still 1.63 then frankly that indicates an increase. Treating by the TSH only noriously leads to Under treatment which is why it's always recommended that Ft3 & Ft4 (the actual thyroid hormones) are also tested. Many people can't get these tests on the NHS in the UK so we often purchase the test online. Sources are on Thyroid UK.Doctors are notoriously reluctant to treat hypothyroidism whether it's auto or medically induced and wait till the TSH is pretty high before startingvtreatment. You don't say what it was before they put you on levothyroxine. That would be your baseline without medication, providing your thyroid hasn't deteriorated any further since on treatment.
Your current result indicates the need for an increase and if levothyroxine doesn't fully work after that then T3 needs adding in either with liothyronine or switching to a NDT.
I very much doubt that after 8yrs on thyroid medication you can stop it..... but hey if you want to try that is your choice. Dropping rather tban going cold turkey would be kinder on your body though.... I hope you have discussed this with your GP?
Thanks waveylinesInterferon was the cause of my thyroid issues..it caused overactive thyroid that then within a short period became very underactive hence the Thyroxine !
I will try and chat to my GP if possible about my concerns
I'm so glad you are going to talk to your GP. You need to ask for a doctor in the practise familiar with effects of Interferon especially as you've been on replacement thyroid hormone treatment for 8years. If they don't know you need to be able to talk to a specialist who does. Personally I would resume your levo until you've done that. You need to be able to make an informed decision with all the facts. No point putting your health on the line on the off chance it might work. You could potentially make yourself really ill with no quick fix. Thyroid treatment is notoriously slow gradual process mainly done by trial & error to find the right thyroid meds, best combination and best dosage. GPs generally are pretty ignorant and think it's easy just pop a pill. For some maybe, for a significant proportion it's not that easy. This is why this forums is so active. If necessary research and see a specialist privately who understands interferon & effects on thyroid. I completely understand how you feel about thyroid treatment.... I've been on thyroid treatment for nearly 20yrs. It took me a couple of years if not more to find my optimum dose & a long process of discovery to find out what else I needed to do to support my thyroid treatment. I went private and they advised my GP. My thyroid basically stopped functioning.... probably autoimmune but never showed up like that on the tests. No one else in my family has hypothyroidism.....though there are plenty of other autoimmune conditions floating about. But at least there is a solution even if it's not an instant fix.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Comprehensive list of references for needing LOW TSH on levothyroxine
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
Thanks SlowDragon for the links I'm 5ft2 and 81kg so very much overweight right now !It's difficult to loose despite eating healthy and walking a lot
Before Thyroxine I was always slim and healthy but what can I say I am 60and slowing down anyway!
I just thought by changing brands to a regular brand of Aristo that things might improve but nothing has changed..the same old fatigue hair loss and joint issues!
Then the brainstorm of maybe coming off Thyroxine might help!!
I do listen to others that have tried and failed by doing this so I'm at the moment thinking maybe not such a good idea as I have thought about this a wee while back and decided I shouldn't take the risk!
This time have been off for just over a week or so not very long!
But I am feeling a wee bit better for now..but getting scared this feeling might go down hill!
I think I need a chat with my GP to try and listen to my concerns if that's even possible!
So request GP test thyroid antibodies for autoimmune thyroid disease and full iron panel for anaemia including ferritin …..As well as vitamin D, folate, B12 and ferritin
And coeliac blood test BEFORE trialing strictly gluten free diet
ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
Alternatively all these can be tested privately
You won’t be able to loose weight if not on high enough dose levothyroxine
And request they arrange ultrasound scan of your thyroid …..or arrange scan privately
This sense of “wanting to come off” is a recognised ‘thing’ with medications and we certainly see it reasonably often on the forum. Apparently this is very common especially with young people fairly newly diagnosed with Type 1 diabetes. Well you may imagine how quickly and seriously ill they become by stopping their meds. Spectacular. With all things hypothyroid we are so much slower but essentially it’s the same process. My sense (if you must do it) is to do it as you have been advised by jimh111 .
Also I would like to add that I have noticed many people are ‘in a hurry’ to deal with their thyroid situation (me too) which is almost the complete opposite of our more general situation slowness. It’s one thing that we still have at our disposal/control, to hurry things along by hook or by crook, when really, slow and decisive is better.
If you should change your mind greygoose gives you a proper plan on which to base your decision. Do your six weeks back on meds and get proper full testing done.
Yes you can. I spoke to an Endo a while ago and she put in my file that I would like to come off Levo at some point. I haven't decided to do so yet as I'm still planning to be a mom and I need to keep my TSH at 1.5 the most. But if the thyroid isn't damaged you can try to function without it. This should be controlled by you Endo and you should be taken off slowly, just just slowly we are put on higher doses
Whilst I would not trust any endo I have personally come across with a clean dry dishcloth to dry my dishes; I do believe there are circumstances where this is possible. The problem will be finding such a thing as a clear thinking, intelligent, caring, willing, supportive and trustworthy endo, or indeed a doctor or nurse practitioner to monitor, who is free to keep up with and utilise up to date research. It’s a tall order. If anyone can name such an individual ….. PM me.
You are right Tistapple!The GPS are not interested in Thyroid levels as long as bloods show within range and you can't even get an appointment unless it's an emergency right now!
And they are unwilling to change levels up and down unless there is a big change in blood tests!
I just thought all the issues I am getting might just be the Thyroxine!
Coming off does scare me and I don't want to feel worse than I do right now!
God what to do!!!
Everyone has given good advice about the risks of this not being a permanent fix and I think I might just push for a chat with my GP if I can to try and sort how I feel out.
I wholeheartedly agree. I was thinking really of someone young who might recover from a single episode of thyroiditis. However when we get on a bit and we know something has been wrong, usually for many years, it’s an unlikely scenario. It’s a bit annoying to see on many websites and books giving the idea that ‘anyone’ can recover from thyroid issues. It definitely plugs into all of us wishing we had never had to have the damn disease in the first place.
Yes. Exactly. And, another thing is the so-called Post-Partum Thyroidistis, which women are supposed to recover from. But I've never heard of anyone actually doing so! Quite honestly, I don't think you can believe a thing doctors say. If they're not lying through their teeth, they're translating their own desires into 'reality'.
So, your endo told you you can live without thyroid hormone? Sounds like she's trying to kill you! lol Do you have any idea how well your thyroid was working before you started levo? If you have your blood work from before diagnosis, that will tell you.
Just because a doctor tells you something, doesn't mean it's true. They have no idea!
Hi, I was put on Levo because I was going through Subacute Thyroiditis in 2020/2021/2022 . Don't know if you're aware of this illness but it's causing thyroid to be under active during the 3rd stage of the illness (everything lasts 2 years). I was not too bad TSH wise(around 2.90 at that time) and still within the range but I was very symptomatic so my endo decided to start me on 50mcg. This was my choice he said, though at that point I had no idea what Levo was and what this meant. I was very unwell and not thinking straight for a very long time so didn't even research Levo treatment, and now I'm stuck in levo not knowing if my thyroid can work on its own. Usually you recover from this illness and I've seen now a lot of articles saying that you should not treat ST with hormones. Another Endo I've seen couple of times in 2022 said that we can try to take me off at some point but she thinks I might've have mild thyroid issues prior to this offset (caused by covid). Honestly, I feel like I'm the only person who's ever had ST and no one knows what to do with it. I'm not under anyone on NHS for my thyroid. I'm seeing endo privately but this means I get no clear follow ups. It's like a hairdresser, you bell with them when you think you need to be checked 🙈 The only good thing is that he sends emails to my nhs GP to have my levo through them so for free.
I am vaguely aware of this condition, yes. But, don't know enough about it to comment. What I will say though, is that the TSH is the least important number. You could have a TSH of 2.9 and still have FT4/3 below range due to a pituitary problem. Proper testing is essential before giving any sort of diagnosis, and no-one can say exactly what is going on with testing TSH/FT4/FT3 and both antibodies. Then all the results need to be looked at in conjunction with each other. However, doctors rarely do this and just jump to conclusions. So, did you have anything else tested at the time?
And, even if ST usually resolves itself, we cannot then say that it's the same for all thyroid conditions, that they can all resolve themself - which is what a lot of people do say. It's just not true. 99.9% of the time, hypothyroidism is for life.
when people say they’re ‘back in range’ it usually means they’re massively under medicated. To feel well my tsh is under range and my t3 and t4 are high in range.
I would be worried you could be damaging your adrenal glands. Right now that might be exactly what is happening. Your adrenals could be working very hard to compensate. You need to do things slowly with thyroxine. Going up or down has to be slow and steady. Coming right off them will be shocking other systems into action with consequences. You say you feel worse since starting thyroxine but it could be you feel worse because you now have hypothyroidism. I would follow the others advice on supplements. I've had great results from going Gluten Free as have others. It's taken me years to understand it's not as easy as popping a tablet every morning as GP's will have you believe.
Thankyou dayoff for your reply!My GP refused to keep me on a higher dose a few yrs back saying my TSH showed i need to be reduced from 125 to 100 and ever since I was told that bloods reveal it's at a normal level!
As for feeling bad like hair loss fatigue joint issues and cold feet and hands i have been like this steadily getting worse for yrs and came to the conclusion it could be the Thyroxine
My vitamin B12 was low so I was given tablets and calcium chews for low vitamin D of which I have been on for yrs ..the vitamin D that is!
Maybe what most people are saying here could be right but to be honest the GP isn't interested in anything more than saying the levels on which I'm on are normal and TBH most don't fully understand how it all works!
My husband is angry and told me to just start my Thyroxine again and try to loose some weight and maybe then joint pain and fatigue might improve as atm i am 81kg and only 5ft2!!
But it's almost impossible despite me trying to eat healthier and I walk regularly... although I am a 60yr old woman!
Confused right now as to start back again on the Thyroxine as I don't want to feel any worse than I do right now!
I feel so much for you. Sending a big hug, first and foremost. x
You’ve almost certainly been let down by your doctor by the sound of things. What you’re describing—low B12, low Vit D etc—are symptoms of under medication for your thyroid condition. Your gut doesn’t function as well when deprived of thyroid hormones so it doesn’t absorb nutrients from your food properly.
How long have you been off your 100mcg levothyroxine? Has it been many days?
A week isn’t too long at all, so that’s good. Really hope your GP is a good one who’s willing to work with you. There are still a few left here and there.
Meanwhile, please use us as a resource! You’ll have maybe noticed that everyone here loves to try to help—we may be fellow thyroid patients but there’s so much knowledge here. x
I feel for you ballie52. It is so frustrating. Every single symptom you have is hypothyroidism. Especially the cold feet and hands. You don't get that with too much thyroxine. Being hyper is much more obvious. Hot, fast heart, agitated, anxious, weight loss etc. You have the opposite. I think you can get hair loss with both. When I first came on here last August I found it very over whelming. Despite my 20 years of thyroid issues I had no clue what everyone was talking about. It's a lot of info in one go, especially when you have brain fog! I didn't really believe vitamins and Gluten Free diets were going to help with my many issues. It really does. I highly recommend Barry Peatfields book 'Your Thyroid and how to keep it Healthy'. You may be needing to get your vitamin and mineral levels to a good point to convert the thyroxine properly. You will loose weight and you will feel better - just stick with the advice on this site and ignore the GP (to a point)!
That was a good two years ago so don't remember the numbers !but to answer your question yes I felt better on 125 and asked if I could stay on that dose but was told outright NO! And that it needed to come down!What can you do i couldn't challenge that so just went with what she said!
~ access your current and historic blood test results so you know exactly what numbers the Doctors are talking about.
~ find (and understand) the evidence that shows low TSH is not as risky as they think it is (see posts / links below ~ it's all there)
~ argue your case to stay on higher dose .
~ if one Doctor won't budge, try another .
~ ask to be referred to an Endo.
~ or , try getting a private prescription .
~ or, take responsibility for you own treatment , buy it without prescription , do your own blood tests to monitor , adjust your dose as you see fit.
See my reply to this post (3rd reply down) : healthunlocked.com/thyroidu... (feeling-fine-but-tsh-is-low) patients have to argue hard to keep a higher dose of Levo when a reduction has left then feeling lousy, but it can be done.
All the evidence you need is here: healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
Explanation of why Low TSH does not necessarily mean overmedication in patients on levo , and the evidence for this : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
I am tempted to say to you not to make this important decision when you are clearly under lots of stress. However it’s inevitable you want to. Just step back for a couple of days maybe. It won’t make all that much difference in the whole picture of things, whilst you consider your post and replies. Is there another way (longer or shorter) to achieve your goal? Try not to be driven.
If you have Autoimmune Thyroid Disease and your thyroid is totally shot (have you had an ultrasound to see what's left), I would say that stopping the Levo is not an option. I tried many years ago and it was horrible. I was also not very well on Levo only (even with a "perfect" TSH and T4 and T3 within the reference interval). My T3 was at the bottom of the interval, though. I am now on Lio and there have been some major improvements. I still have days, though, where I feel not well at all. I did find a publication on Pubmed saying that having TgAb antibodies (which I have) can cause symptoms like hypothyroidism independently. It is and has been a trial and error thing for the last 50 years.
I did not read through all the commentary, but if you posted your values, I'm sure there will be lots of advice. I can not see you getting off the Levo after so many years, only adding more to it. Overall I'm always careful about what doctors say, online or otherwise. You need to know a whole lot about yourself and then decide what you want to do. There is a good chance that your guess is at least as good as the doctor's. But again, I feel that stopping the Levo without further consideration and information could be dangerous.
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Thyroxine + HRT 
Thyroxine troubles
If you wanted to wean yourself off thyroxine...
Getting off thyroid meds
