Walking

[Dahliasanddaisies]

Morning all,I'm just looking to see if anyone is or has been in the same boat regards walking.

When I was diagnosed last May I was still able to walk a few miles (school run) not easy as such but I could do it. I was doing 12k steps a day.

However, Since September 2023, so now nearly a year, I've really struggled walking any distance at all. That was when I was on 50mcg levo. My anxiety went through the roof and whenever I tried walking even short distances, my muscles would start aching and my body felt like it was shutting down. It was terrifying, I still don't know if it was anxiety or the affects of being under medicated.

After a truly awful year, I'm finally starting to feel physically a bit better some days and mostly I'm doing about 6k-7k steps per day around the house etc. I still don't have any energy per say but I'm not on my knees all day long.

I really want to start getting out of the house more, I'm really anxious about walking for more than a few minutes. I get really stressed about it (which obviously doesn't help) and I'm avoiding anywhere I can't go straight from the car to sitting down.

Now obviously my fitness and muscle strength has been affected by doing nothing for a year and I now don't know if it's lack of fitness, anxiety or undermedication that is the issue? Or maybe a combo.

I walked to the end of the road and back this morning (0.5k) and my muscles felt all shaky and tired when I got back. I've had to lie on the bed for half an hour to recover.

So has anyone else been though this? Should I just keep going and try to improve my fitness and muscle strength?

I'm 6 weeks into a new higher dose of 100mcg and have a few weeks to go until testing..possibly need another increase then.

[TiggerMe Ambassador]

It looks like you convert well looking at your previous results so hopefully as this latest increase settles in thing should continue to improve, you've done well to optimise your vits and mins so everything is looking good.

I used to be just the same and since optimising I've gradually been able to increase my steps and recovery, I literally started with a daily loop which I would only increase once I could walk it at a reasonable pace and it didn't leave me shattered, really important to allow whatever recovery time you need between any activities, I'm now jogging several times a week for 20 mins and rowing

I found a fitness tracker really helpful, one with heart rate variability which shows your recovery

[Dahliasanddaisies in reply to TiggerMe]

Thank you! That's good to know. I will keep on with my walk to the end of the road and hopefully it will get easier 🙏

[RedApple in reply to Dahliasanddaisies]

You'll likely have good days and bad days. It's frustrating to say the least, but what you're experiencing isn't unusal at all.

[Dahliasanddaisies in reply to RedApple]

Thank you, yes frustration is the word!! I've found depths of patience I did not think possible 😂

[TiggerMe Ambassador in reply to Dahliasanddaisies]

You'll get there but don't push it, often a 20min catnap does more good than a 20min walk 🤗

[JoJoloveschocolate]

I’m like that too. Sometimes I run out of energy really quickly and feel like I’ve hit a wall and start walking like a puppet . I felt absolutely great the other morning - went for a short walk around the marina, had a coffee at the cafe there, got back home and decided to tackle some housework. In my mind I had visions of cleaning all downstairs because I literally felt like I could do it, but about 5 minutes into mopping the floor all the energy just swirled down the plughole! All my muscles ached like hell. I had to lie down and then fell fast asleep for an hour! Do you have a park nearby? I go to my local park for a walk sometimes because there are benches to sit down on for a rest every so often.

[Dahliasanddaisies in reply to JoJoloveschocolate]

It's so weird isn't it!! People think I'm mad/exaggerating. Yes there is a park at the end of the road, but just walking that far is a stretch right now, hopefully I'll be able to walk around it soon 😀

[JoJoloveschocolate in reply to Dahliasanddaisies]

Yep - very weird and very frustrating. I don’t know how I can go from feeling great to feeling like crap with no warning…from full on to f*** all in a flash! My journeys all depend on: how far from the car I have to go when I get there? Is there a toilet nearby? How far from home is it? Is it somewhere I can go in the morning - as my saying goes: if it’s after 12 midday - no way! Sometimes I feel so well I set off for a walk feeling like I could start jogging, then get 5 minutes down the road and start slowing down, seizing up! Hang in there. We’ll get there.

[Dahliasanddaisies in reply to JoJoloveschocolate]

Yes my life has got very small! Someone asked me round for a drink (can't drink) at 6pm. Oh how I laughed 😅 Trying to figure out summer holiday activities which don't involve much walking is hard. I really hope that next summer isn't like this. I want to go on holiday

Got to hang onto the hope eh JoJo! X

[JoJoloveschocolate in reply to Dahliasanddaisies]

I would literally go to bed at 6pm if I could get away with it! 🤣I hang on until I can’t stay awake any longer… 830pm! Next year we’ll be like new people. It’ll be like we’re aging backwards!

[Dahliasanddaisies in reply to JoJoloveschocolate]

Haha yes we will be like 21 year olds again 😅 I'm also in bed by 8.30 but it was 7pm not that long ago so I must be getting better!!

[JoJoloveschocolate in reply to Dahliasanddaisies]

🤣🤣 I’ve not had to go to bed in the afternoons for a while so I think I’ve improved too. I used to go to bed every day from 1pm until 4.30 and then back to bed again at 830! I haven’t had to do that for a while. Lots of things are better - tinnitus has gone, terrible ear pain has gone, constipation loads better, IBS loads better - has been like a miracle (not taken any meds dor weeks!). I just need my aches and pains and fatigue to improve more…and my weight to come down.

[Dahliasanddaisies in reply to JoJoloveschocolate]

That's brilliant news! Yes my rest time has decreased. I still go for a lie down in the afternoon but usually only 30mins. Yes to the tinnitus!! So nice that's gone away. My eyebrows are back too. No headaches, like you say it's just the fatigue and muscle weakness lingering (well and the anxiety, be nice if that buggered off!)

[JoJoloveschocolate in reply to Dahliasanddaisies]

Moving in the right direction aren’t we. x

[Dahliasanddaisies in reply to JoJoloveschocolate]

You've just reminded me of the terrible ear pain! Thank goodness that's gone too, I couldn't lie on my side in bed for ages

[JoJoloveschocolate in reply to Dahliasanddaisies]

Horrendous! I used to get pain like being stabbed in the ear with an ice pick! Then stabbing pains in all my joints …like being jabbed with a needle by an evil elf!!

[Dahliasanddaisies in reply to JoJoloveschocolate]

Yep, so weird this thyroid stuff 😂

[FallingInReverse]

YES YES YES!

This is exactly my next goal after 1 year stuck miserably at 50 Levo 10 t3; and the last year having worked up to 100 Levo 10 t3.

I ran running races monthly, with a handful of half marathons and marathons, in the 2010s.

Deep down inside - the fact that this disease stole my running is one of the hardest things to deal with.

I now count progress in just having a functioning day where I can be active enough to clean the house, go shopping, go on business trips, etc.

All the things I used to do without thinking and THEN I’d add in a run , stretching and some weight training.

As I get optimal (and also work on my iron to tackle my breathlessness) - I am determined to increase my daily walks of 2-3 miles to a daily jog of the same. I haven’t crossed over yet : ) I am not pushing myself. It will happen when it happens. But I have to believe I’ll get there again. No marathons of course. No hard runs. But I’ll be darned if I won’t do a light jog one day without consequence!!!!

[Dahliasanddaisies in reply to FallingInReverse]

Yes I feel your pain. In fact, looking back not being able to run any more was one of my first symptoms. I was training for a 10k but I just couldn't do it. I'm not quite as far along as you, but it gives me hope that I might be able to clean my house again soon!!

I'd love to set a target of walking a section of the coast path or something. I miss being able to use my body

[FallingInReverse in reply to Dahliasanddaisies]

🤗🤗🤗 hugs to you!!!

I am finally nearing top quradrant for ft4 and ft3 both and I don’t want to jump the gun but I feel… better than ever. Time will tell. Will probably have more ups and downs but there is hope!!!!!

[Dahliasanddaisies in reply to FallingInReverse]

Ah that's so great and lovely to hear. Yes you never want to jinx it by saying you feel better do you? 😅

[Sparklingsunshine in reply to FallingInReverse]

Pre hypo I was very fit, even though I have Fibro, Ehlers Danlos and PA I went to the gym 5 days a week, used to row, for upto an hour, go on the bike, run on the treadmill. Then I go into weights and had one to one tuition withdeadlifts and other whole body lifts, barbell squats. I loved exercise and always felt full of energy. Then covid hit and shut all the gyms and mine went bust. Later that year I got diagnosed with hypo.

I feel like hypo is the straw that broke the camels back. 2 years ago I went back to a gym, but never enjoyed it that much. I found it much harder than before, I was getting pain in my feet and knees, it became a chore to go, something I've never experienced before.

I feel like being hypo has limited the energy I have available and I'm not reovering as quickly. I made the hard decision to suspend my membership as I might need surgery on my foot and will be unable to go for several months.

Its really hard as exercise was always as much for my MH as physical but right now I dont feel able to continue. In the future, who knows?

[Dahliasanddaisies in reply to Sparklingsunshine]

Yes it's so hard, like you, I used it for my MH as much as anything. It's no surprise my anxiety is so bad these days. I'd settle for being able to walk and do a bit of yoga! I miss my gym classes

[Sparklingsunshine in reply to Dahliasanddaisies]

And I feel like anyone who isnt hypo doesnt understand. Doctors and other health professionals really do take the attitude that a little white pill everyday and you'll be running marathons in no time.

I recently saw a NHS physio and explained I was getting pain after exercise, especially the following morning, so much so I was hobbling around, and I mentioned struggling during exercise and how hard I found it and he was so blase, kept going on about setting myself fitness targets.

Either his peopke skills were severely lacking or he misheard what I was saying. I'm not a target driven person. I couldnt give a monkeys about setting rowing records. I just wanted to not be in pain and feel like I'm a 100 in the morning. Needless to say I didnt bother seeing him a second time.

[Dahliasanddaisies in reply to Sparklingsunshine]

I don't think anyone can understand unless they have lived like this. It's such a random condition where you 'look' normal. Everyday tasks that most people wouldn't even think about become difficult and they can't comprehend why you can't do them anymore.

[Sparklingsunshine in reply to Dahliasanddaisies]

Yes it doesnt help that you look normal, arent in a wheelchair or on crutches, sadly most people's very limited exposure to disability is usually something obvious like a blind person with a guide dog or cane, someone in a wheelchair, maybe a deaf person using sign language.

They cant conceive that you can look fine on the surface but feel like dying inside. But there are so many invisible illnesses, strokes, heart disease, lung conditions, MS. Years ago when my Fibro was very bad I had a blue badge, I was only in my late 30's or so.

The number of times I was challenged by people indignant about the fact I used a disabled space and who assumed I was faking it.

[SlowDragon Administrator]

which brand of levothyroxine are you taking

Do you always get same brand

How long now have you been on 100mcg

Get bloods retested 8-12 weeks after increase

[Dahliasanddaisies in reply to SlowDragon]

Thanks slow dragon, I'm on Accord. Tried and failed with a few others. Always get accord now. Been working up to 100 for 3 months (87.5 for 6 weeks, then 100 for 6 weeks) got a blood test in 2 weeks, looking forward to seeing my levels now.

[Bertwills]

The thing that made the biggest difference for me was LDN. I have Fibro & hypothyroidism & went from gym & walking dogs miles to probably doing about 5000 steps around the house & garden.

LDN took 3 months to build to full dose & I found I could do 15,000 steps some days & lost the aching. It didn’t last forever. I’m about to start another course, hope it works again..

Clinic in Glasgow does phone appts with prescriber. Not expensive for private medication. clinic158.com

[Dahliasanddaisies in reply to Bertwills]

Thanks Bert, I'll look into it. I'm seeing a private clinic for my thyroid so i can speak to them about it I guess!

[Bertwills in reply to Dahliasanddaisies]

You could try that. Don’t start on too high a dose & take it very slowly. Loads of info from LDN Trust on YouTube etc.

[arTistapple in reply to Bertwills]

Keep seeing LDN mentioned. I would like to ask a question about it, if that’s ok, because you sound like you have been successful.

Does LDN act in a similar way to a ‘stimulant’? I mean caffeine or ginkgo biloba, green tea, or anything that ‘creates’ false energy. If that is how it works it utterly robs me of energy for prolonged periods and makes me quite ill.

[Bertwills in reply to arTistapple]

I don’t think I’d describe LDN as a stimulant like caffeine. I think the low dose method is not yet fully understood. It’s been found to be effective in many ways. It seems with Hypothyroidism to make the hormone dose you’re taking more effective.

I take mine in the morning, some people take it to help sleep, it’s very individual & doesn’t work for everyone or keep on working either. I’d do more research or just try it. It’s not v expensive but the process is slow, 3 months at least to reach full dose though not every body likes the full dose and feels better at 3mcg than 4.5.

I have to take sublingual drops as my stomach wouldn’t tolerate drops I swallowed. It’s trial & error. But worth it for me. Hope that helps.

[arTistapple in reply to Bertwills]

Thank you.

[arTistapple]

”my body felt like I was shutting down”. A nigh on perfect description.

[Katherine1234]

Same here, walking around the house ok ( I have terrible ataxia too). Was very ill a year and half ago reactivated epstein barr and strep B. My thigh and glutes have all but gone. I am only able to walk half the length of my road (it is a small road). The exhaustion is terrible. I feel it has something to do with cortisol as well, as my cortisol runs low. I say this because when I was so ill my cortisol went up into the 600's and I had the strength to work albeit very sick. Now my cortisol is back in the 300's. When it goes low I work and feel like I am going to collapse. I have to lay down afterwards, I am now on T3 so I hope my cortisol will improve. I every other day inject B12. Waiting to feel super fit :/ I am on 75 mcg T4 and 20 mcg T3, I also take all co-factors.

[Dahliasanddaisies in reply to Katherine1234]

Sorry to hear that Katherine. Yes my cortisol is low too, I'm waiting for the thyroid levels to be optimal before I do anything about it, or hoping it raises on its own!

[Katherine1234 in reply to Dahliasanddaisies]

Not much is said about cortisol on here including electrolyte's and minerals. There might be discussions and I have missed them. I have to make sure I keep electrolyte's up. I have a glass of water with a 1/4 teaspoon of the unrefined grey sea salt in the morning and take fulvic mineral drops throughout the day. I am sure being hypothyroid takes down our cortisol. My endo says my cortisol is ok at 320 before 9am in the morning. NICE guidelines say to treat anything under 400. Mine has been as low as 118 before. I am now on T3 I was a bad converter. The funny thing is I have friends that are very sporty and do marathons and such. The symptoms they describe after running 10 or 15 miles is the same symptoms I have trying to walk half my road It is an awful feeling, I feel like I am going to collapse and die. After laying down for half and hour I so start to rally round.

[Dahliasanddaisies in reply to Katherine1234]

Yes same, that's how my body feels too. Yes I read that about referring for under 400, mine was 215 and they marked no further action! I think it is very common, particularly when (like me) you've been left with inadequate thyroid hormone for so long, your adrenal take up the slack and I know I was running on adrenaline for months before crashing.

I've been taking it as easy as possible since February and just have to hope that with improved thyroid treatment, my adrenals/HPA axis improves eventually too.

[Katherine1234 in reply to Dahliasanddaisies]

Ditto sweetheart, I was prescribed 25 mcg for 5 years (my doctor does not know what she is doing). I felt worse than before. I had to be her to go up to 50 mcg and she left me on that for another 10 years. I then went to 75 and then 100 and left on this. My left adrenal now has a benign mass on it 8 mm's. I am sure this had something to do with it. I read that adrenals store a lot of vitamin C as they need it. I make sure I take around 2000 to 4000 throughout the day. I am now on 75 T4 and 20 T3. My dry skin has started to recover and my hair has stopped falling out.

You cannot function on 215, that is crazy! I am sure it was because like me your Aldosterone tested ok and then they refuse to do the further ACTH test. So hey ok, you can just live with awful low cortisol. Except we don't live. Every day is a struggle.

[Dahliasanddaisies in reply to Katherine1234]

Yes its really shit, I'm getting so fed up of it. I see a private GP now as mine was so bad, so at least I get help with my thyroid needs. It's taken me 4 months to get from 75-100 as my anxiety got so bad. Appointment in 2 weeks time when hopefully I'll go up a little bit more. I'm exhausted with feeling exhausted!!

The blood cortisol is hopefully not quite that bad as they didn't draw the blood until 10am and I had been up since 6, so if it peaks 30 mins after waking, I assume it was higher but still not great.

I do try to take vitamin c every day but I'm terrible at remembering, so need to get on with that. I've started drinking coconut water for the potassium and hydration. No idea if it helps!

How did you find out about the mass on your adrenal?

Like you, some things are improving but my energy and stamina are still pretty terrible. Although I have gone back to work 3 days a week (from home) after having 5 months off, so I must be more improved it just doesn't always feel like it

[Katherine1234]

I am on a 3 day working week, working from home too. An ultrasound of my adrenals showed it up. Then I had an MRI.