There are a lot of posts asking about swollen feet and ankles etc. But for me the swelling, the aggravated general fluid retention and the very much more painful joints started immediately after I increased my Levo. dose from 50 to 75mcg.
I don't remember if it was the same day, but it was very close. It had never happened before. I had my parents over and was getting ready to take them home when I realised my feet were sort of burning/tingling oddly and when I looked down they were swelling out through the bars of my sandals. Since then it's been pretty much every day. I had some general fluid retention problems and have very fluid filled skin on my arms, but the feet and ankles and to some extent the fingers too and a very much worse pain in hips, knees, ankles and even toes sometimes, started with the increased dose. I have since moved up to 100mcg a day and it's still the same. I am due to be retested in 2 and a half weeks and suspect I will need to raise the dose as my TSH was still 7.3 when I tested on 75mcg, hence the increase to 100. I also feel even more tired/weary (not sleepy) and more fed up and hopeless.
What might be going on here? The swelling is a bother. GP not interested. All associated vitamins and minerals are either good in range (my view based on information available on this site) or being actively worked on to raise (ferritin). Anyone else experienced this?
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FancyPants54
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What you need is a Free T4 and Free T3 blood test. Both these are very informative and if you are not converting T4 into Sufficient T3, you need an increase. i.e. T4 is levothyroxine. levothyroxine is an inactive hormone. It is supposed to convert to T3 (also known as liothyronine) but we sometimes don't do so efficiently and remain symptomatic.
I do wish doctors would go back to diagnosing by symptoms rather than blood tests which tests can vary daily and hourly.
Any blood test for thyroid hormones (you may already be aware of this) is that it has to be the earliest possible (fasting but you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards.
No. I'm still working up the doses. Both readings are just about midrange, slightly under.
I was prepared to think feeling worse before I felt better was a thing I had to accept. But I didn't expect that to kick in from 50 to 75 and remain at 100. So far in my treatment my TSH continued to rise until I got to 75. That was the first dose that started to bring the TSH down a bit. But the T4 and T3 barely moved at all from start to now.
I'm looking for other people who might have had similar because I feel very down at the moment. Lifeless and hopeless and I want some hope that I can get better. Taking a medication that makes me feel worse the more I take seems odd to me.
I understand completely. I think it is because we are used to taking a headache pill for instance and it works quite quickly. With thyroid it is hormones so when we are finally diagnosed they are usually very low, work-up has to be gradual and we are definitely puzzled when doctor tells us results are 'normal' but we feel anything but normal.
We have to convert T4 into T3. Researchers have found that combination dose of T4/T3 works better for many people but the prescribers don't seem to read research, especially those at the top of the Associations so many patients may have too low a dose.
One of our 'good' doctors stated that nowadays we are prescribed too low doses to keep TSH within a range, when we feel best when its around 1 or lower. (doses used to be between 200 and 400 - I have read)
I scanned through your previous posts, couldn't see any antibodies test results
Have these been tested?
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Is this how you do your tests
What are your most recent results and ranges on TSH, FT4 and FT3
I used to use Genova Labs for testing a few years ago whilst keeping an eye on my thyroid (undiagnosed and not obviously an issue, but something not right). My antibodies were tested every time then and nothing other than the odd one or two at the very bottom of the range. Since starting on Levothyroxine last year in June/July, I've been tested through my private hormone doctor, who tests T3 but not antibodies. My last test I specifically asked for them and they were done. Still within the reference range but peroxidase is right at the top of the range now, so probably some mild autoimmune starting up. I am also changing my HRT at the moment, I've had a horrible menopause and my hormones had hit rock bottom on this same test sheet, despite HRT. My next test, in about 3 weeks, will be the Blue Horizon test which I ordered yesterday, so yes, they will be tested next time too and I will try to keep that up to get a picture over time.
I last tested on 26th June 2018
TSH 7.13 (0.27 - 4.2)
T4 17.1 (12.0 - 22.0)
T3 4.5 (3.1 - 6.8)
Thyroglobulin Antibody 24.8 (0 - 115)
Thyroid Peroxidase Antibodies 32.8 (0 - 34)
Yes I test in the recommended way, first thing, fasting, no meds for 24hrs.
I have recently pulled my supplements back a bit because it was costing me too much. I have ferritin in the high 30's so I'm supplementing iron with a chelate tablet and with the BetterYou spray. My vitamin D is 90 with a range of 50 - 200. It used to be much better but my doctor told me to stop supplementing it to bring it down! Now I use the BetterYou spray which includes the K2. My B12 was reasonable before supplementing (I tested active B12) but I still use the BetterYou spray every day. I also take a vitamin B complex and 1000mg food grade vitamin C with my iron chelate.
My feet started to swell and tingle as soon as I went from 50 to 75 levo and remains now I'm on 100. Some days it's better than others. And mostly it's just swelling now, the tingly feeling was only at the start of the new 75 dose and occasionally first thing in the morning in bed.
It's hard to know what is going on because I have such a problem with my female hormones and a potential cortisol problem too. I am due to see an endocrinologist about that in late October. I was feeling very down when I wrote the post. I needed a bit of hope really.
Yes, my B complex does contain folate. It also contains biotin so I must remember to not take it for a week before the next test. I think I did that last time. Do you know how biotin affects the results?
I have a hard time working out the ranges. Given my reference ranges above, can you tell me what numbers correlate to "towards top of range" for T4 and "at least halfway" for T3? Both my GP and my private doctor are starting to shake their heads and say my free t levels are "fine" even with that high TSH muddying the waters. I suspect they are not fine at all, so it's going to be a fight. I think my private doctor screwed me up by the way she introduced me to levo . 25mcg every other day for about 3 months, then 25 for 6 days a week for too long. Then 25/50 for 6 days a week only (this eventually caused mayhem). Then 50 for 6 days a week. I got more and more sick. Then she tried me on 1/2 grain NDT at Christmas and ruined my holiday entirely. Never felt anxiety like it. At which point she wanted me to stop taking anything but I put myself back on 25 levo because trying to stop was awful. Loads of my hair fell out and I felt suicidal for much of the early part of this year. I then started doing it properly and pushing her.
I only let go and handed over because I had been unable to get myself well for 5 years, despite working with a nutritionist first, then Dr P. then carrying on myself. I should not have trusted her. I was so tired of the struggle, I needed to be a passive patient for a while. It was a big mistake. Now she's saying that I will possibly need one more increase but that will likely be it. Considering we have no idea what 100 a day has done yet, I feel creeping dread that she can say that. And at the same time she's giving me a hard time about my weight! She want's me on a low carb diet and frankly I'd rather die right now than try to stick to any kind of diet. Eating a comforting home cooked meal (by my brilliant chef husband) is the only pleasure I have in life now. It just isn't happening. I want to scream at her "I'm hypothyroid and you messed up my treatment. I'm menopausal and you've not been able to fix my hormones for that yet either! Of course I'm overweight. I'm sloshing with fluid as well as fat!". It's as if it's all my fault! I went from fit, active and the slimmest I'd been in 20 years to fattest ever, exhausted and incapable of exercise and completely inactive in the flick of a switch. It is not my fault.
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do not get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Oh I have been taking hormone every day since I moved back to 25mcg after the Christmas debacle. And I've always been entirely compliant at how and when I take it and leaving an hour afterwards before even having a cup of tea in the morning. I tried taking it at bedtime but it kept me awake all night for a week. That wasn't good. Oddly, at first, the "day off" resulted in me feeling much more energetic. I used to get my housework done on the "day off". But as my dose started to go up a bit that didn't work anymore.
Getting to where I am now has been a nightmare if I'm honest. Bad advice and feeling so vulnerable. Last August bank holiday I hired an electric bike and cycled 45 miles and felt wonderful to be "back". I thought the levo was the answer. I was still on 25 every other day at that stage. But that lovely respite only lasted about a week. Nevertheless I was convinced I'd have it licked and be cycling around this summer as I long to do. It hasn't happened. I can barely walk much of the time and I can't remember when I did any housework.
I too have experienced swelling in the feet from time to time and I’ve been on NDT for the last 3 or 4 years. It’s usually when one of my electrolytes is out of balance (magnesium potassium sodium etc.). I take several supplements and sometimes my body says OK that’s enough and oddly enough it’s a beat swelling kind of thing that’s the signal. The thyroid hormone (dosage) that I take is stable and has been for all those years. No but it’s other things that I take from time to time I think I get a little bit too much of. One of the things I learned to do is take equal amounts of magnesium and B6. It works as a natural diuretic - very kind endocrinologist shared that with me long ago. You can start out with 50mg each but I wouldn’t go above 200 mg each. It takes about 10 days to get things balanced out but you don’t have to keep taking the B6 and magnesium. If the swelling comes back I would look at what else I’m taking I would look at my electrolyte intake. One time I was taking glucosamine to help with a joint problem and my body said OK that’s enough and the feet swelling started again. I discontinued the glucosamine and my feet went back to normal. So my inclination would be look to at what is in your diet maybe something new - something that has changed some supplement that you’ve added and discontinue it for a while. I Hear you saying that you increased the dose for your thyroid and maybe that’s the only thing you’ve changed. In which case - It’s wise to continue with the thyroid medication but you might look at what else you’re taking that now you don’t need because you’re getting the thyroid hormone that you need.
We are a chemical soup and it’s surprising how a little bit here or a little to little there and things like the foot swelling start to occur.
That's very helpful. Thank you! I'm not currently taking magnesium. I ran out and haven't replaced it. Funds are very, very tight. My business is in a right old mess because of me and I've not been able to have a salary for 6 months now
My B complex has B6 marked as 10mg. Are you suggesting I might want to add extra B6 and match it with magnesium? I've been worrying about electrolyte balance because of the heat we've had. I've been sweating for months! But don't know of a reasonably priced test to check what's going on. I've not changed anything else. As I said, I've reduced my supplements a bit.
The recommendation of my Dr. was to take equal amounts of magnesium and B-6. As I recall I took 100 mg of each at the time. Since then I have shared this natural diuretic with many and it has worked well regardless of the dosage chosen. (Note: too much magnesium can cause loose stool / diarheah). The Dr didn’t give me a test - just suggested I try it. Probably the difference between private practice / insurance driven medical care and whatever it is that is the medical care in the UK. (Sorry, I plead ignorance!). The point is, you don’t need a test to try it - when we are talking vitamins and minerals - your body will tell you! It eliminates the excess / screams for more if deficient. We must learn to listen.
So, if you are taking B-6 already, I would just match it with an equal amount of magnesium. Increase both from there if you do not experience improvement in a few days (3-10).
I hear you on the work thing! I too experience varying degrees of health and my work (self - employed) does suffer. I feel well most of the time. My biggest downfall? TRAVEL! I get out of good eating habits - away from the things I do to augment thyroid replacement hormone ( like hot lemon water in the mornings) and BAM! I am down in the dumps wondering what happened?! Gaining weight, sluggish energy, brain fog.
One recent thing I’ve learned to “reset”? Go on a 10 day jump start of veggies only. By day 2, I’m wondering why I ever strayed into bad fats, sugar, and alcohol! (Ah but such is the way the other half gets to live and indulge.). Energy returns on high! Brain starts firing all kinds of creative ideas, weight starts falling off. When, oh when, will I acquire the self-control needed to stay on the healthy path for me?!
Keep in touch! Love to hear if this works for you.
I shall add magnesium back into the supplements list. I always used to take it. I've just let it slip. Thank you. My love of protein would be my downfall in 10 days of veggies. But I should try to eat more of them. I rarely have veggies with breakfast. I did buy a new low carb cook book on Saturday, just because it looked to have some nice ideas in it for breakfasts and perhaps to bring with me for lunch. I did go completely low carb for quite some time a few years back. I didn't feel good on it at all and I think it made my thyroid problem worse. I'm not going to do that again, but less carbs would be good.
Yes, I too love protein, however....I've learned that there are wonderful proteins in veggies plus good fats. Number one on the list: Avocados. My protein lunch today was two avocados. The brain loves fat! So much better than carbs.
There is more and more evidence piling up that the low carb / Adkins kind of diet is not healthy in the long run. Especially for those of us in the low thyroid community - where cholesterol is most likely a problem. Beans are a good source of protein - and they get such a bad rep as to the many side effects of poor digestion. What do I say? Learn how to cook them at home where you can soak them and pour off the first water, and slowly simmer them into all sorts of good dishes and soups. When they are properly prepared the chance of receiving the "after effects" is greatly reduced. Research on communities where longevity is the norm (living to over 100 in very good health) saw that the one constant was the many different bean varieties in the everyday diet. Veggies are complex carbs and not to be lumped into the same set as baked goods, or sauces and gravies.
Still, to each his own. It's a 10 day reset that pulls the appetite back down to normal and gets us off of the starving/binging blood sugar rollercoaster. We really can do quite well on vegetable proteins.
One of the things I am looking to add to my diet in the "good fat" category is coconut oil. I use for many things but have yet to learn how to cook/use it in recipes.
I should have been specific. I'm a committed carnivore who also loves fish, cheese and eggs. It helps having an organic egg farm just down the road with a roadside vending egg machine! I stopped off for a dozen on the way home tonight. I eat loads of eggs because of that machine. They are huge and delicious.
My doctor tried to tell me not to eat tomatoes. I've just picked a bowl full tonight along with a bowl of chillies of various sorts and 2 aubergines. She can get on her bike. I love home grown tomatoes. I'm not a big fan of beans I'm afraid, even cooked properly. But we get an organic veg box every fortnight as well as buying specific extras and our own summer veg. My absolute favourite breakfast is boiled egg, but I have to have a slice of toast or bread and butter with it. So I'm looking around for different egg ideas for breakfast. Sometimes I have smoked haddock and poached egg. And I'm eating a lot of black pudding and pate at the moment to help raise my iron levels.
Coconut oil we use all the time. Fry in it, bake with it, make drinks with it in, eat it off the spoon. And put it on your skin at the same time. I love coconut, although I've yet to find an edible recipe for using coconut flour!
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