After years of being on levothyroxine I am suddenly having what I think are bad side effects, e.g. thigh pain and gut pain/possibly gallbladder attacks (although I suspect that I could have lupus and/or Hughes Syndrome, which are possibilities that are yet to be fully investigated). I am on the same amount of levothyroxine (50mcg) as I was when I was almost 5 stone heavier than I am now. Can losing weight mean that you need less levothyroxine? My latest NHS blood test results show that my free T4 is about the same as it has always been since being on levo, i.e. mid range, but my TSH had gone down.
Thanks in advance for your experiences/thoughts.
Fielder
Written by
Spicer21
To view profiles and participate in discussions please or .
I had acid stomach, lots of gurgling and general digestive issues, persistent niggling hip pain, racing heart especially at night, sweats, anxiety, insomnia. spent a good while researching what coukd be my gut problem -GP said IBS.
my TSH (for what it's worth ) had got v low altho T4 still in range but quite high. of course no one thought to look at T3 and I hadn't learnt about thyroid then. that was what started me looking at it in depth - I found on Web that thyroid dosages are sometimes set according to weight ...told GP who reduced Levo and it solved many of the problems
Hi Daffers123, My stomach gurgles often and really loudly since I had my possible gallbladder/gallstones attack. I'm gathering you're on T3 (as well as T4)? I plan to have some private blood tests done to include T3 and try and go from there. Do you feel better with the addition of T3 and have you managed to get it on the NHS? Thank you for your help.
ACtually, I had to give up on the T3 at that time, as it was exacerbating my anxiety which, in turn was raising my cortisol to the ceiling and also giving my acid stomach too.
After I stabilised my T4 at the right level, my stomach symptoms and the anxiety and everything else returned to normal.
I am now trying to add a little T3 in to my T4, starting with very small dose and aim to build up, but I have always had to buy the T3 myself. I have sourced (with help from this forum) some 5mcg tablets as previously I was cutting up 25mcgs!
It seems that in order to try to feel well we often have to do quite a bit of experimenting and checking things for ourselves - with private blood tests etc...I surmise that you probably had to take the initiative to have your cortisol levels checked, i.e. rather than your GP getting involved.
Cutting up 25mcg tablets must have been a right old fiddly nightmare! I hope with the gradual addition of the T3 you will keep improving.
Yes GP and Endo not slightest bit interested in cortisol saliva tests so then it's tricky to know how to move forward and treat yourself! I considered adding HC and DHEA (which I hoped medics would help with ) but chickened out. Stressed/underperforming adrenals were one of my first signs of trouble.
How did you know it was gall bladder -I did wonder if that was affecting my gut too
I have so far spent thousands -dare to add it up !
Might you be able to get the HC and DHEA by seeing a private specialist? (If though you have any pennies left to afford it, of course!)...It's so not right that we have to resort to paying for our treatment when we've already paid into the NHS!) Showing my ignorance here, but what is HC (I do know what DHEA is though )?
What were your first signs of stressed/under performing adrenals? (I ask because I am thinking of doing a saliva test, but am not sure whether it's appropriate/worth doing in my case.)
Re knowing about gallstones: I had an ultrasound scan done back in 1998 (because I was have some stomach pain) and at least one gallstone showed up on the scan. (To cut a long story short, I was offered an op to remove my gallbladder, but ended up refusing it, because I discovered that my problem at that time was actually slow gut motility...When my GP prescribed me domperidone - which speeds the motility up - it stopped my pain. You can get it over the counter now, it's called Motilium.) Anyway, by now I am assuming that I have more gallstones that have become symptomatic. The pain caused by gallstones is mainly right sided, over the liver area and under the right ribs. And, because I think my pancreas was probably inflamed too during my attack, I had pain running from under my sternum to my belly button. You don't have to have an actual attack to be having gallstones problems; the gallbladder can 'grumble' and not like it, for instance, when you have a heavy meal and can cause you general stomach discomfort. I am coping at the moment with eating little and often (4-5 small meals a day) and it helps to drink apple juice and cider vinegar in water.
glad you had so many responses -this forum is a life saver. i will try the 5 small meals myself. A doc I see in London recommended Slippery Elm for tummy but not sure if it works.
on the subject of auto immune diseases I am currently testing out Low Dose Naltrexone which may be a good controller of AID. only one week into it so no comments yet but it might be worth considering or researching at least? it might help you myasthenia wot sit too !
I have been confused about this myself. A couple of years ago I lost about 6 stones very quickly (in six months) with Exante, and became overactive (thyroid wise!) - I can only remember that my head started twitching (either up and down or side to side - can't remember which now) and my doctor said I was now on too high a dose. Since then my weight has gone up and down, and I am currently on 175mcg - however, my weight increased over the last year to its highest ever, but my doctor says that I am still on the correct dose, which seems very odd, especially as I have been on a higher dose in the past.
The first step to wellness is to get copies of your blood tests - with the ranges - to see exactly what was tested and what the result was. Doctors know nothing about thyroid and often talk a lot of claptrap, making it up as they go along to cover their ignorance!
Thanks greygoose. I've got my latest TSH and free T4 results, taken just the other week. I'm also planning to get some private tests done to include T3 and will go from there.
My weight loss has been very much slower than your original weight loss and so it didn't dawn on me until recently, i.e. since my thigh pain has made me bedridden, that I might be over medicated. It seems logical to me that with less body mass we should need less thyroxine and with the weight going back on we should need more thyroxine. However, my blood test results are presumably like yours, not much changed despite weight change and within range, so I doubt that my GP would say that I'm over medicated unless he were willing to accept that my thigh pain and gut problems are possibly due to too much levothyroxine. (I am gathering that most GPs don't take much notice of blood test results...as long as they are within range that's fine by them, not bothering to look where the results are within the range, pretty ignorant of the implications of being near the bottom or top of the ranges and the relationship between the results.)
I guess in the circumstances it also has to be a case of us judging how we are feeling on a particular dose and noticing any unusual symptoms or symptoms that we've had before when we've been over medicated (or, for that matter, under medicated). I'm going to do some googling about this and will post up anything that I find of any relevance to this issue.
I don't know whether you're still endeavouring to lose weight or not, but I have to say that since I've been eating 4-5 very small meals a day, I've been steadily losing weight at about 2-3lb a week and haven't felt particularly hungry as I think the snacking keeps my blood sugars on a more even keel. I started doing this as small meals are supposed to help with coping with a grumbling gallbladder that has stones that may or may not be causing gastric episodes. Being possibly over medicated may have been helping with this steady weight loss, I don't know. But now I've reduced my levo dose from 50mcg to 25mcg a day I'll have to see what happens. Will post again about that when I know what's what. (I still have 3 stone to lose to reach an appropriate weight for my height.)
I cannot believe you've been on such a low dose, 50mcg, for many years. If you are having problems it could well be that you have been undermedicated. (my own opinion and am not medically qualified).
If you can get a print-out of your results, with the ranges that would be helpful. The ranges are important as labs differ.
Stomach issues can be due to having low stomach acid due to being hypothyroid.
It is Free T3 which is the most important test. T3 is required in all of our receptor cells (of which there are billions) and I have no idea what amount of T3 can be converted from 50mcg of T4. I bet you Free T3 will be extremely low. If it is your body cannot function normally at all. In fact you can get more problems I should imagine.
If your GP wont' test Free T3 as many labs wont if TSH is 'in range'. You can get a private Free T4 and Free T3 blood test from one of our recommended labs.
My most recent test results, taken just 9 days ago, were:
Free T4 15.7 pmol/L 12 - 22
TSH 0.93 mlU/L 0.3 - 5.0
I have never had my T3 levels tested, but am proposing to get that done privately, just as you advise.
I have high TPOs and have another auto-immune (fairly rare) disease called Ocular Myasthenia Gravis (OMG) which causes me binocular double vision and droopy eyelids. It's a medically accepted thing that symptoms of OMG are liable to get worse the more levothyroxine an OMG-er takes. When I was first diagnosed with hypothyroidism, my GP put me on 25mcg levo a day and wasn't too sure about putting it up to 50mcg, but said that on balance he thought it would be better for me. When the dose was increased my OMG did get worse...but as I am used to coping with double vision and droopy eyelids...I would try and put up with any increase in my ocular symptoms in order to feel better in other respects.
Interestingly, I remember that I was experiencing horrendous arm and shoulder pain that made me feel suicidal for many months leading up to my diagnosis of hypothyroidism. And now many years later I have horrendous thigh pain and some intermittent really bad arm and shoulder pain too.
The confusing thing is that some of my current symptoms fit with drug induced lupus, which levothyroxine can cause, albeit rarely.
Other than increasing the dose of thyroid med to possibly include T3, is there anything else that can be done about low stomach acid, do you know?
Your freeT4 is quite low, as a rule of thumb it should be in the top quarter of the range, so about 19.5. Although the freeT3 is much more important, as that shows the active hormone that your body actually uses.
There are a few remedies for low stomach acid. There is a good home test, drinking a glass of water with bicarb of soda and timing how long it takes to burn - Google 'burp test' for the full details.
Milder cases can be treated byregularly drinking water with apple cider vinegar. If that's not strong enough for you there are tablets, I think called Betaine. You can figure out how low on acid you are by how many of these acidic tablets you can stand.
If Levothyroxine is bad for your OMG are liothyronine (T3) or dessicated thyroid (extracted from pigs, contains both T4 and T3 but as more complex molecules) as bad? You may struggle to get either on the NHS, but they are fairly cheap to buy yourself. I can't help but think the OMG is probably exacerbated by low thyroid function, as nearly everything is, so it may just be a matter of sneaking the medicine in past it
I had my suspicions that my T4 might be on the low side. It's been circa that for many years, but it's only recently that I've been feeling this bad with my muscle pain and gut/stomach issues.
Funnily enough, I've been taking apple cider vinegar and water since my recent horrendously painful presumed gallbladder/gallstones attack. Apple juice seems to help too, to reduce the discomfort.
I will do the bi-carb test and good to have been made aware of the betaine tablets in case I need them.
You and Shaws have made a very good suggestion about me possibly feeling better on dessicated thyroid and I will definitely get my T3 tested...sneaking them past the Myasthenia is a good way of putting it! As I was saying to Shaws (below) I'm going to see whether any fellow OMG-ers with hypothyroidism have fared better on NTH or T3...and see if there are any research papers on it. Many thanks, again for all your advice; I greatly appreciate it.
Fielder, I am sorry about the Myasthenia problem as it's enough to deal with when hypo without another autoimmune problem.
If, as you say, levothyroxine can make it worse I can see the reason for your low dose to avoid worsening your OMG.
Would taking a Natural Thyroid Hormone be more helpful for you as it isn't synthetic like 'levo'?. Of course it isn't licenced in the UK but I'll give you some details anyway, just for info. You may have to buy it yourself although doctors are allowed to prescribe it on a 'named patient basis' in the UK.:
I am glad of the links you've given me - will check them out...
Such a good suggestion - by you and SilverAvacodo - that NTH might be better for me, what with my Myasthenia. I shall do some googling re this to see if any other Myasthenics have found it better for them (as it's common with Myasthenics that they have another auto-immune disease too - more usually hyperthyroidism than hypothyroidism though).
Interestingly, my Myasthenia came on circa the same time as I was found to be vit D deficient and hypothyroid, i.e. when I was peri-menopausal. And, as I don't have either of the two known MG-related antibodies in my blood and my Ocular Myasthenia Gravis is therefore considered to be 'sero-negative', my neuro-ophthalmologist has accepted that my having high TPOs is a 'substitute marker' to indicate OMG.
Tbh I believe that my low dose thyroxine is more to do with my GP being generally conservative rather than taking into account that the levo is liable to make my Myasthenia worse; they hardly know anything about it because it's quite a rare disease and take no notice of whether other drugs they prescribe me for other things are contra-indicated in Myasthenia. My neuro-ophthalmologist has made no comment about my free T4 levels, but I might ask his opinion next time I see him...but that's not until August, so I might be on NTH by then.
Myasthenia I think is the worst of the two, i.e. hypo/myaseth. I have read that if we have one autoimmune we are apt to get others. At present I have three.
I have also read that Turmeric/curcumin are helpful with autoimmune conditions.
Generalized myasthenia is often horrendously difficult to live with so, in some respects, I feel 'lucky' that my myasthenia purely affects my eyes, but life's not easy with it...Especially as I refused the medication to treat it, which is prednisolone, usually combined with another immuno-suppressant such azathioprine, as I didn't want to risk the serious side effects of the drugs. I suspect I may have lupus now too, so, if tests prove positive for that, I might end up on immuno-suppressants anyway.
Will read with interest about the Turmeric - thanks v. much for that
Thank you, Shaws. My family though are riddled with auto-immune diseases though, e.g. my parents have diabetes and late onset rheumatoid arthritis between them, but I'm hoping to get away with 'only' having two and that my OMG doesn't generalize to the rest of my body.
I do get a weird kind of shaking where my body to the touch is still, but inside it's reverberating right to my core. It happens intermittently and for only a few minutes at a time. I haven't been able to connect it with any particular activity or time of day or with a change of meds or anything, but it has only been happening in the last few months, after losing a few more pounds of flab...with my total weight loss (lost very gradually) being almost 5 stone.
I had those symptoms several years ago, especially at night when my whole body was vibrating inside. Prior to that I was in so much pain when I lay down at night to go to sleep that I wasn't sure I would wake up in the morning. I believe I was overmedicated. I don't have a thyroid gland and take nowadays 100 of levo daily and125 once a week. Now and again it is not quite enough and I may take an extra 25mcg one week if I get too sleepy. At the time I was prescribed 150 and then after a few years125 daily. I have not had either symptom since the dosage has come down. I would love to change to NDT but my endo says why change something if it is working!! well over the years thyroxine has probably contributed to other health issues... namely a hip replacement & carpal tunnel.
Thanks for describing what happened to you with the vibrating and overmedication, Pepekins. It makes me realise that, what with my still having a thyroid gland that is still working at least a bit and having lost a lot of weight, being on 50mcg was overmedicated for me. (I've reduced my dose to 25mcg now and I guess only time will tell.) I think your endo obviously has a point about not changing something if it's working, but I wonder whether, although on the face of it's working, it's possible to generally feel a lot better on NDT (even if a person does't think they're particularly feeling below par). However, that said, I know someone who went on NDT and felt absolutely awful on it and was glad to go back to being on levo. I only recently looked up all the possible side effects of levo and kind of wished I hadn't, so I can understand why you think that it might have contributed to your other health issues.
Reading your post is such an eye-opener. I wake up most nights feeling very sick and hot and experience a lot of strange pains in the gut, but never thought for a moment this could be related to thyroid. For the past couple of years I am experiencing symptoms of neuropathy - feet and legs especially feeling strange and tingly and I am sure that is hormone related. However, when I asked the endo he said no it wasn't. It is like banging you head against a wall trying to get these things sorted out and just feel better.
I so agree about banging your head against a brick wall, Twitchen. I've been getting intermittent tingling on my top lip and on the end of my nose, which are pretty minor in themselves but are, I'm sure, part of the jigsaw puzzle of symptoms that I've been gradually gathering over the years.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
)?
Anyone else lost their appetite and losing weight on levothyroxine?
Losing weight 
can levothyroxine cause sternal pain?
Do you need less thyroid medication as you get older?
