can’t believe it my doctor increased my levothyroxine from 75 to 100 a day after me speaking to him about aching legs and feeling out of sorts. I felt much better with the increased dose That was about three months ago but now it’s come back i feel the same all over again I don’t know what to do
Aching legs again : can’t believe it my doctor... - Thyroid UK
Aching legs again
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Megymoo
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You probably need another increase. 100 mcg is not a high dose.
that’s what I thought it. It kept me awake last night pain from the bottom of my buttocks to my knees, and I have been exercising and calorie counting to loose some weight for the last four weeks and I haven’t lost an ounce, it’s been so frustrating
No, well, you wouldn't. Because it's not over-consumption of calories or lack of exercise that made you put the weight on. And low-calorie diets and over-exercising can make you more hypo because they negatively impact your conversion. And, if you're under-medicated to begin with, that's going to make you put more weight on, not lose it. So, my advice would be to eat more and exercise less. 
this is exactly the pain I have had in my legs. It’s reducing now but still appears every now and then. It’s so horrid and miserable I feel for you! Do you have it in both legs?
it’s a horrible feeling and it’s in the both legs
mine was at its worst at the beginning of this ‘journey’. It’s what took me to the doctor before I was diagnosed. I had the pain in exactly the same place. My walking had slowed as well. I had slowed. Walking up hills became something to dread. Then I got plantar wotsit for a while and my hands got weak. I think it might be the tendons but not entirely sure. GP and Endo said definitely not hypo related. Absolutely disagree! It’s taken me a while to settle on a dose which has gradually made me feel physically better. I have the pain ever so slightly sometimes now but it’s way, way better. Keep moving but also try not to overdo it x
i have had tendon problems for years with hypothyroidism. Not at all uncommon except apparently unheard of by GPs and endos…!
Yes! It makes sense especially as muscles weaken because the tendons have to take on more work. That’s just my theory though! I got so lost on Google trying to figure it all out.
What you described is what I developed shortly after my thyroid was removed and slowly got worse to the point I became bedridden eventually I found a rheumatologist that actually know what being a doctor means and she diagnosed me with psoriatic arthritis.
I’m sorry you had this diagnosis. At one point I asked the GP if it were rheumatoid arthritis (my aunt has this) and the GP said I didn’t have the antibodies. I’ve not heard of psoriatic arthritis before. Are you being treated and are you feeling better?
sounds more like Polymyalgia. Did your doctor check ESR and CRP blood levels
no I don’t think so… physio initially thought polymyalgia I think but then blood tests showed high TSH and so I was put on Levo then… what are ESR levels? CRP was high I think… I can check back… thank you!
I have been trying to lose weight for months and my weight just doesn’t move. I am due for another blood test soon.
I have been the same 30 minutes of exercise every morning and weight watchers for about a month I have not lost an ounce so frustrating
Using weight watchers most people will lose a large chunk of weight in the first week. Just because of the nature of restricting calories.
I think it's a big red flag if you didn't lose any at all in the first week, and is more evidence it is not what you're eating but actually being hypothyroid that is causing the weight.
Gaining weight is a hypothyroid symptom, so you probably won't lose any until your dose is optimal. Some people are lucky and lose weight extremely easily once their dose is right. For others it unfortunately never comes off.
Restricting your food intake will make the thyroid situation worse. Your body needs food to process the thyroid hormone you're taking, so if you don't eat enough it's the equivalent of having a dose reduction, which can lead to gaining more weight.
Edit: I wondered if the pain in your legs could have started around the time you started to restrict your food intake or shortly after. That would make a lot of sense.
thank you for the reply I have been exercising because apparently it gets your metabolism working and using weight watchers so I thought this will shift some weight but I put on a pound, it’s so frustrating when you can’t shift the weight I only need to loose a stone and I am in the perfect weight bracket. The weight has only come about because of the thyroid problem. The pain in my legs happens about every three months after the doctor has increased my dose of thyroxine I feel great when I have the new dose and it’s like as if my body gets used to the new dose and my body wants more if that makes sense
Have a look at Michael Mosley's 800 FAST diet; it's amazing, lose weight & increased energy.
Could it be sciatica?
SlowDragonAdministrator
When were vitamin D, folate, B12 and ferritin levels last tested
What vitamin supplements are you currently taking
Low vitamin levels extremely common on levothyroxine, and as we get older
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Request new blood test including vitamin testing
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
I haven’t had the private test done for about a year and my doctor only test your TSH I am going to send fir a full thyroid test today and I will put the results on here
only do private testing early Monday or Tuesday morning
Watch out - postal strike next week
Not sure if this is any use. But after a year of being on levothyroxine I developed agonising pains in my lower legs and ankles. I asked my nhs doctor if I could change my thyroid medication. His reply was that there was only one kind of thyroid medication in Britain!!!
I then asked my endocrinologist about the pains and what the dr had said. And he changed my medication to eltroxin, and said that the NHS dr probably didn't even know there were other alternatives. Anyway the pains went away within days of changing meds.
So, what you're saying is that it was the fillers in the tablets that were causing your pains? Because Eltroxin isn't a different sort of treatment, it's still levo (T4), but a different brand. And, the only difference between the different brands is the fillers. The active ingredient, T4, is still the same.
All the Endo did was change your brand of Levo to another brand. I tried 3 until I found one to suit. The fillers in Levo medication cause problems for some of us.
how are your vit D levels? When mine were low my legs ached so badly I could hardly walk, once I improved my levels the aches went away.
If it's aching from your butt into upper leg then it sounds as if your glutes are at fault. If possible try lying on your side and supporting yoour head - keep knees together and slide knees upwards. Then lift the upper knee and hold for the count of 5 or more x 5 - or more. Then straighten legs and raise upper leg - hold - x 5. Then do other side ! These can be done in bed !
I have spinal stenosis in my lower back and hip bursitis - the above exercises help a great deal in holding the scaffolding up 🌞
I do similar stretches to these and have been doing for years, however just recently I have started having pain in my right thigh mostly but also in my left too, climbing steps is a massive effort now. I also have spinal stenosis, was diagnosed about 12 years ago and after a multitude of various painkillers was eventually sent to pain management that cured about 95% of my problem but just lately this aching in my leg muscles is becoming a real worry ☹️
My legs ache everywhere and I can hardly walk when my levels are off., I stagger.
I am on 200 mcg levo at this time and I am feeling better, legs don't keep me awake and miserable as much as they did and slowly starting to be able to walk without extreme pain and stiffness especially in my knees.
Well I think that depends upon what your blood tests say. If the dose is low then you may need more and being low you would still be hypo which causes aches and pains as well as weight gain.
The person who said eat more and exercise less makes no sense. Exercise is so important and also its about what you eat not how much, eat more protein and less carbs. If you eat protein but low carbs your body uses more energy as it has to convert protein to glucose and this use s energy roughly you can eat 3x more protein than carbs so you don't have to starve, fish is best. Plus Diets dont work as they are all based upon the loss weight quickly, nothing is gained or lost quickly it is a slow process. Think of it this way you use energy 24 hours a day and if you increase that energy use but cut calories then if you are in a deficit =you lose weight. So you want to eat a lot of protein to make your metabolism work harder about 1g per pound of weight a day.
Skeletal muscle is important esp later in life and science is now showing that muscle is actually part of our endocrine system and releases hormones. Plus think about it if you have less muscle - you burn less energy and the more muscles you have the more energy you need.
Plus muscles are important for later life health - we lose 3% of our muscle from the age of 30 every year. So your metabolic totals per day reduce massively as time goes on but we eat more as we get older and exercise less.
Lack of muscle also causes diabetes = 80% of the sugar in our blood is used by muscle through the day - but with reducing muscle and modern life this blood sugar level rises as muscle depletes. A can of coke has 17 tea spoons of sugar 40g. So we then develop insulin resistance- which is made worse with diet drinks sweeteners as they cause a insulin spike but no sugar is supplied to cells and cause metabolic disease.
Therefore there is more sugar in your blood leading to diabetes as well as excess calories getting added as weight. You see we all hear about insulin but none of us really appreciates what it means - sugar causes a insulin spike =insulin is a messaging hormones' that tells the bodies cells to store but not use energy, so fat goes on but you can still feel fatigued because your cells lack energy. Plus sugar is so bad because it then causes signals to say we are hungry- more food more sugar please and the cycle goes round and round. We get fatter and fatter but don't know why gradually day by day (nothing happens suddenly and this is important to note- we don't go to bed one day and wake up the next obese and fat so we don't go to bed one day dieting and wake up slim the next its a slow and long process but it accelerates once you start building muscle because even when your sleeping that extra muscle is now burning calories. Studies showed that just eating more protein put on muscle and increases metabolism as we don't eat enough protein - so you may end up eating more just because you switch from carbs to protein. Add to this by getting some small dumbbells' and stretch and do some resistant exercises to add to your youth as that is what it actually does. simple exercises with weights that weigh 2kg a bag of the dreaded sugars weight is enough.
The sugar industry lied to us in the 80s telling us we were obese because of fats, its sugar that makes people fat not fats. So cut sugar out use stevia as that does not cause a insulin spike and insulin resistance and then diabetes.
sorry for the length but there is a lot to say.
thank you for that information it is a lot to take in what you have said but it’s really good information
Restless legs is associated with underactive thyroid. Mine has been better since my doses are correct again.
I'm have restless legs. Would you be kind enough to share what your blood tests results are now you don't have restless legs to see if I need to increase my levels please?
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