I feel really ill after running even though I’ve been running for 25 years!! What is causing this?
Running makes me ill now? What can I do? - Thyroid UK
Running makes me ill now? What can I do?
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Runner25
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SeasideSusieRemembering
Runner25
What are your current test results, with reference ranges, for
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
What thyroid meds do you take?
Do you take any supplements?
SlowDragonAdministrator
Your profile suggests you aren’t on any medication at all .....?
Want to get back to my normal healthy, happy self but do not know what else I can take as T3 and T4 is not available
Please explain
If you have hypothyroidism, you will need replacement thyroid hormones for life
How much levothyroxine were you/ are you on?
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Your profile suggests you’re on levothyroxine. But how much are you on? Did your doctor keep raising the dosage until you were symptom-free? Or have you, like so many others who find us here, been left on a pitifully low dosage that wouldn’t liven up a hypothyroid snail? 🐌
When did you last have a thyroid function test and what were the results?
Think I can already predict what you might reply... 
I’m on 75mg of Levo. I asked for T3 test but it just shows on my results as postponed?? My T4 is 19 and my TSH is 1.0. He has now agreed to refer to a specialist, although I notice in the referral it is to an endocrine surgeon?? Not sure that is the same as an endocrinologist? During my last convo with my doctor he tried to put me on anti-depressants (he called it a little pill to help me sleep, even though I have been sleeping the same for the last 20 years!!) and said that what I was experiencing wasn’t really an illness!!! Since being on Levo I get migraines that can last in varying degrees for 3 days particularly after exercise, exercise is becoming harder even though I have run for 25 years, I often feel slightly low and get tired very easily. I get the impression that the doctor is starting to think that I’m a hypochondriac!!!
When Drs. don’t understand what’s going on they’ll often try to put someone on an antidepressant or not believe them. If you’re not feeling depressed or having trouble sleeping I wouldn’t take the antidepressant. I see an endocrinologist who is also a surgeon. You probably have no reason for surgery unless an ultrasound found an issue. An endocrine surgeon deals with both treating and operating on thyroids or other endocrine surgical needs. He must first be trained in endocrinology and then surgery. You should question anything you’re not sure if. You can call his office maybe they have a nurse that does triage and she can explain it to you. I can’t take T4 only meds I got severe headaches and very ill from them. Feel better
What kind of ill? Are you nauseous? Is it stomach cramps? or wiped out. All that bouncing gets your lymph moving which could be moving toxins but you have to get rid of those toxins and not redistribute them.
Hi Heloise, if you're bouncing toxins about, what's the best way to get rid of them? Is it drinking water? Anything else?
Actually BMs are important. If you are only going once/day it's probably not enough.
But having read more of your responses I think that your low dose may be your problem. My daughter was a marathon runner and still runs about five miles a day and is also on Levo and doing fine. Of course everyone handles Levo (T4) differently but 75 mcgs is usually not enough, 100 or 125 is more common and that's IF you are converting to T3. Many people take T3 only because they can't convert. As had been mentioned T3 keeps the energy flowing but your mitochondria use glucose to produce energy or stop it. The hypothyroid condition is far more complicated than we realize.
I would take magnesium before calcium...just leave four hours between either and your Levo.
You must also take B vitamins, absolutely essential. Most of us don't understand what happens to food once it goes into the digestive tract. Your microbiome (individual group of flora) develops from the type of diet we choose. Hypos need lots of good protein which fish can provide. Messages from your microbiome orchestrate what happens with the nutrients and sometimes bad microbes will create problems. Our bodies are meticulous when it comes to the way it works . Every symptom has a REASON. Conventional doctors rarely look for the reason, they look for a drug. Conventional doctors now have all sorts of tests that reveal what may be going wrong.
I'm editing and adding this for an example. Hormones also run our bodies and estrogen seems to be implicated in breast cancer. It turns out from my latest readings that as estrogen is metabolized some of the metabolites remain in circulation and those are toxic to the body. As we age some of these processes like detoxing slow down, enzymes which help with that are also reduced and then our immunity is disrupted. Chronic disease is an eventuality if we do nothing to counteract it.
Are you on t3? You need more T3 if you’re exerting yourself!
I’ve read this, but how do I know how much? Will my Dr prescribe this? I’m in 75mg of Levothyroxine at the moment?
Runner25
If you provide the test results, with reference ranges, that I mentioned above, we can see whether you convert T4 to T3 well enough. If you don't that indicates you may need to add T3.
Will my Dr prescribe this?
In the UK GPs can't prescribe T3, it has to be initiated by an endo. Giving the test results above will tell us whether or not your GP is likely to agree to refer you to one.
Ok thank you, I’ll ask for my results
75mcg is only one step up from starter dose of levothyroxine
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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin (doesn’t include folate)
medichecks.com/products/thy...
Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
If you add your most recent results members can advise on next step
guidelines by weight might help push for dose increase
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Oh thank you so much this is all so useful. I think they have tested me 4 times in 2 years and one was only because I asked them to die to feeling rubbish. I was not told to not eat or not take dose either! I am talking to GP over phone today and was going to ask if she will refer me to a specialist, but I’m not sure she will. I will ask for my test results too when I get them. I am on Calcium with Vit D tablets due to having just being diagnosed as Osteopenic, but have read that calcium can prevent Levo being absorbed! So I have stopped taking Calcium for now. I don’t feel that I can improve my life style really to help as I am a (healthy eating) pescatarian, slim, non smoker, 3 glasses of wine at the weekend, runner and dog walker!! I’ve developed all these things since having my ovaries out at 40! My health has gone down hill since that point!
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Frequently only TSH and this is completely inadequate
First step is to get FULL Thyroid and vitamin testing
Vast majority of UK members forced to do so privately...but no harm in asking
Budget restrictions usually mean GP only allowed to test vitamin D once every 2 years
NHS rarely tests Ft3 or thyroid antibodies
As pescatarian you are at higher risk of being Low in iron and/or ferritin
Thyroid disease is as much a disease of the gut and poor vitamins as it is getting thyroid hormones optimal
guidelines by weight might help push for dose increase in levothyroxine
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Are you taking any HRT?
As non meat eater, likely to struggle to maintain GOOD iron and ferritin levels
Essential to test vitamin D, folate, ferritin and B12 at least annually
Low vitamins tend to lower TSH
She may not be converting her T4 to T3 this happened to me even though I was on Nature-thyroid which contains both T4 and T3. I still wasn’t converting my T3 to T4 and had to add Liothyroine another T3 med. It’s such a delicate balance.
I was a competitive sports woman before my thyroid was removed. I was extremely fit, strong and slim, I gained a huge amount of weight, which thankfully i lost eventually but i never regained my fitness, I use to run 8 miles a day, british military fitness, weekly horse riding, judo, i taught self defense, long daily walks with my dogs, i never sat down.
I had a massive list of hypo symptoms all gone now but i still get chronic pain in my hips, knees, ankles, calves, muscle weakness and fatigue. At one point i felt like i had forgotten how to run.
For you i suspect too little levo, try and keep doing a little bit, i was told not to exercise, even now if i over do things i am crashed for days, try not to let your energy go, hindsight is great and i now wish i had done things differently. As a runner im sure you are aware of your nutrition, its even more important when hypo as you dont absorb well, i hope you get it sorted, i miss running xx
Oh my goodness I am so sorry to hear that you are struggling so much, but finally someone knows what I’m talking about, I could cry! I’m not a competitor really but have run for 25 years varying full marathons to 10ks, but mainly I’ve always run for myself as it makes me feel so fit and healthy and you can eat cake!!! But now running can make me feel ill for days and I’ve cut down to 5 miles twice a week. Then every so often it doesn’t make me feel ill. Do you get migraines with it, for me the worse symptom. Are you on the T3 that everyone talks about? Could your Dr refer you to a specialist or do you already see one? Have you tried doing a little run, or does it just leave you feeling dreadful even for a mile or 2? To even do that a few time’s would be great, but still hard for someone if your sporting level. Good luck to you, I hope things get better somehow x
I agree with endomad about the wisdom of maintaining a sustainable level of activity.
I let my pride get in the way when i couldn't perform to my previous level, and lost the inspiration to do daily practice because i couldn't be impressive anymore. With hindsight i would have done better to accept a level suited to 'Fit Old biddy' and keep it up daily,rather than 'boom and bust'.
Now i fear that even if i do feel well enough to do more again ,i've let my basic fitness/strength/flexibility slip too far to regain it once it's gone.
If i had maintained the daily discipline, but accepted a much reduced intensity/duration for the time being ,i think i would be in a better place now.
It’s hard when you’re used to running 10 miles for instance to just running 4 miles and that makes you feel ill! But I’m determined to do it, running has been my saviour in many ways for 25 years, I can’t not have it in my life. You can do it too! Maybe just try a couple of miles? You will get back to some level of fitness hopefully x
Hi Runner and Espeegee , you're right thanks for the 'kick up the bum'
I know it's always possible , it's just a damn site harder to rebuild when it's gone, than it is to maintain it when it's there. So try not to lose it all, even if that means accepting a 1 mile run 3 times a day with a nap in between.
I'm just feeling sorry for myself at the moment,because i took my knee for granted by not using knee pads in february, and it's paying me back. 'Housemaids knee' takes toooo long to get better. "Look after your knees folks..... you'll miss em when they're gone !"
Running was never my thing , i think you're all weirdo's I prefer climbing , or swimming , or rowing, or splitting logs, or Tai Chi ,which folk think is just waving your arms about (until they know better )
Ha ha! Well you definitely haven’t lost your sense of humour! Keep going and keep smiling xx
After 5 years of horror on wrong meds, too little meds, i found a good endo who put me on T3, i take 75-100mcg a day, which is a lot. My adrenal glands are now buggered and have to take low level steroids. Of course once i got my t3 sorted i thought 'woooohooooo i will be a running fool' i just thought i would build up again and off i go but something has happened, i dont have any muscle memory, i am unable to build up or sustain any strength in my legs.
Yes i got shocking migraine like headaches, the tight metal band ones with visual disturbance and over sensitive to smells.
I still have reasonable back and upper body strength but my left leg has atrophied?? in fact if lying down i cant lift it up, no probs with the right leg. My physio chap is stumped, he said just not possible unless iv been walking one legged for last 10 years hahaha
I had my first rheumatology appt last friday, he said my right leg is shorter than left and amazed i dont suffer with back pain. I am booked for more scans with dye injection sounds hideous, he has no real answer why my leg atrophied or why its so weak, my ligaments in groin, hip flexor & abductors are badly inflamed (7 months now) so i think its connected to thyroid. Its all very odd, i dont expect to be running marathons anymore but i should be able to do a few miles alternate days. Its very frustrating tbh, i am 60 years old so this started in my 50's, its a bloomin nuisance, exercise was always the answer for me if i felt tired, cant sleep, sad, angry, bored, the answer was always go for a run, I was quite obviously addicted to exercise & energy.
I am a million times better on T3 but a million miles away from who i was before thyroid removed. Who knows i prob would have slowed down a bit with age and the good old menopause but i have zero leg strength. Exercise burns through your t3 which is prob why you feel bad, there are a few on here who have managed to keep reasonable levels of exercise, so be one of them, we had this discussion recently on here with a lady who cycles. I think we also covered keeping good levels of iron for energy and stamina.
My dr says the amount of training i did he is surprised my joints didnt fall apart, I have no arthritis but plagued with joint pain, at least i wont get osteoporosis my bones are super dense & strong, i am very supple/flexible, just no strength or stamina. Lol a friend said its gods way of telling me to slow down......i would have licked her if i had the strength hahahhahha.
Are your adrenal glands buggered due to T3 or something else? Did they tell you? That’s so annoying about your leg? I’m totally like you as running has always been my cure all, but now I have to plan runs around being able to totally rest after as it puts me in a weird almost zombie state and then 4 hours later the headaches start. Are you on HRT? I can’t take it, but that might be a real help to you. All my health issues started at 40 when I had my ovaries out! I’ve got a blood test Thursday morning with GP, but he said on the phone he can’t imagine I’ve got all these symptoms looking at the reading that I had in November which were ok. The thing is I asked for that test because I didn’t feel ok at all, even back in November! Should my test show low T3 levels? Will they def test T3 in the normal test? X
My adrenals are buggered because after thyroid removed no one told me i would need to take thyroid replacement, so i was very ill for few years. Levo made me even worse than no treatment at all, NDT made me jittery but better, so got my adrenals tested and wowzers my cortisol was in the bin 107 (150-550) endo did stim test that made me really ill for 7 days but showed something was working as it shot up to 650 waay over range, they just dont work on their own, only pump adrenaline, i took NAX , herbs, supplements and adrenal cocktails. I had cortisol tested again 2 years later and it had dropped to 95 (150-550) so endo put me on 10mg hydrocortisone a day. I couldnt find a dr to help about adrenal stuff so you just have to get on with it as best you can, any stress, annoyance and exercise can floor me.
I dont take HRT i was estrogen dominant for few years so used progesterone cream to balance, now i have to use estrogen cream for a diff kind of atrophy lol
I sailed thro life super fit, never saw a dr, never had lady problems, didnt do children, nothing, then thyroid came out and boom, im getting 50 years worth of STUFF all at once hahahha.
Drs rarely test t3 and even if they ask for it the labs often refuse! they have to test mine as i only take t3. If you can just order a private test by post but keep pushing your dr, put the request in writing and say you want the request on your notes (you may need to refer back to it one day)
My list of symptoms was unbelievable, i forget most of them until i read something and think 'omg yes that was awful' all went within 4 weeks of t3 all except the joint pain, muscle weakness and fatigue. I try and accept this is it, this is as good as it gets, you can drive yourself mad otherwise. I have great days, ok days and absolutely rubbish days. This is a self help illness, its like keeping 10 plates spinning all at once, all your hormones are connected and work in balance (read dr sarah myhill on this)
drmyhill.co.uk/wiki/Conduct...
drmyhill.co.uk/wiki/Common_...
It is sad to say that you will be your best advocate to get well, drs these days skate by with basic knowledge and rely on drug company training which is biased towards prescribing drugs, usually anti depressants, statins, beta blockers pretty much anything but the right tests and the right level of hormones. If i could find a decent dr who knows their stuff, i would go the bio identical hormone route but finding one is not easy, i took years and 4th attempt at a decent endo! never found one for my cortisol stuff and i need time for stuff i love doing, i dont want everything to be about my not having a bloomin thyroid lol. x
What have you done to lose weight? How much and how long did it take?
OMG i gained 6 stone in 2 years after TT. Nothing worked, i tried it all WW, slimming world, calorie counting, it was depressing, i dont drink alcohol so i couldnt even give that up! a friend did keto so i thought i would give it a go, i lost it all, it took 2 years. Like any diet its miserable lol but the food is good, healthy and plenty of it, i dont like being hungry. I was already gluten & sugar free so it wasnt that big a stretch for me but i miss bread with a passion. If i fall off the wagon the weight leaps on 4-5kg in a week, so i have to be as strict as i can between 20-30gms carbs a day. Mostly its ok hubby works away but when he is home he fills the cupboards with bread, biscuits, chocolate, sweets, crisps arrrrrrrrrrrrrrrrrrrrrrrrrrgh i can get very resentful and stroppy! i have gained 10kg this year as i injured a ligament in my leg, so even less activity than usual and not being able to drive for a few months living on less fresh food but i know i will lose it before the end of the year.
TT and weigh gain is no joke I gained so much over the past few years and I can’t really exercise to the point of burning calories because of this blasted psoriatic arthritis attacking ever stinking tendon from my hips to my toes ....
I have cut out bread/pasta products and I’ve reduced my portions, I never drink soda or juices I pretty much only drink water.... maybe now I can survive on only air, lol. Endo and nutritionist have been no help my Endo actually said my weight was something I was doing....Idiots!
Hahahahha dont get me started, my yoga teacher says she is a 'breathairian' no kidding google it pmsl she says you can all you need from the air and just drink water, she is such a lovely lady but utterly bonkers. I was once very stern, she wanted me to do a 30 day fast with her!!!! i was like 'listen love, i dont drink, smoke, take drugs and dont have a thyroid, food is my only pleasure left and you want me to give that up!' apparently some people 'breatharians' say they've not eaten for 30 years hahahahaa love it.
I lost the weight without exercising and the fact that dr myhill is pro keto was enough for me.
drmyhill.co.uk/wiki/Ketogen...
I eat full fat delicious food but the naughty child in me craves toast, bread, pasta, jacket potatoes, some people can eat a varied, balanced diet, everything in moderation and lose weight, i am not one of them.
Do you track your carbs or do you just not eat potatoes, cereals, breads and pasta?
How many carbs do you eat on the KETO? I think I might give this a try !
I’ve swapped running for walking, keeps me mentally healthy. I don’t know if I’ll ever run again but it’s been a good swap so far.
Good for you! It just takes a bit longer to walk though! How far do you go? X
Only do 3.5k weekdays and 5.5 at the weekend. I have Tuesdays off because o work till 11pm and am usually knackered the next day. We try and get a pace on to work up a sweat. What I’ve noticed is that I’m able to keep up the consistency, the regularity of simple exercise. If I run or do HI training then I get fatigued too easily. Walking and a little kettlebells or yoga/Pilates is really keeping me on track.
My husband can't run anymore as his calf muscle keeps popping out. Instead he goes on long walks instead. I have never been great at running but walk most days. Even that gives the hip pain to a certain extent but I find it is less stressful than running even though he goes at quite a pace and I am running along to keep up sometimes. Most weeks we cover at least 20 miles.
Exactly! Keep on going and I hope the Levo helps xx
Running always gave me stitch, so i went in goal at hockey to avoid it, and now try and stay away from charging rhino's, and be early for the bus.
Perhaps we should try asking the Nhs for an en-suite salted swimming pool prescription, after all it would be much cheaper than a T3 prescription. And Boris has just announced that we can get bicycles from the GPs surgery, but i've already got a bike......but i'd love a swim every morning.
As we get older nutrition becomes more important. I’m convinced that as I exercise a lot that when I eat a lot of good quality meat (150 g at least a day) I feel much better. You can get away with it when you’re younger. I know you say you’re a pescatarian but maybe it’s worth giving it a go - 50g 3x day. I doubt you’re getting enough protein with fish.
podcasts.apple.com/gb/podca...
Interesting podcast on importance of protein
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