Symptoms returning

[Murphysmum]

Happy new year!

I know there was a similar question recently on here, and whilst the answers were useful I am on a very much higher dose of levo.

As some might be aware, I visited Dr Toft last year and he increased my levo to the highest it’s ever been, 200 Mcg. Immediately I felt better, and around 6 weeks later I felt mostly normal for the first time in about 18 months. I still felt I lacked oomph though, or any extra in reserve if you like. And despite finally returning to my normal activity levels - which basically comprises a 4 mile dog walk first thing and then never stopping for the rest of the day until I sit down at night, I cannot shift any weight. This isn’t like me, normally if I watch what I’m eating I can lose quite easily.

So, I was supposed to go back to see dr t before Xmas. But I was very busy and I felt great, so I thought I’d leave it until afterwards. However, about three days before Xmas my energy disappeared and has stayed that way. All my symptoms are back, especially leg and arm weakness, but all the random pains, fatigue ,lethargy, and boy, the tendon pain in my knees and hips, are back.

I don’t have up to date bloods because it’s been the festive season but will get those soon.

Could it just be that I need another increase? The highest dose I was on historically was 150 mcg so I can’t believe I now need so much more. My gut feeling is that I need T3, from reading about it and just from the symptoms I’ve never really shifted - the brain fog, the muscle weakness and lacking that extra bit in reserve.

Like everyone else this time of year, I really want to make this my year to get fit again, after falling ill in 2017 and using last year to just focus on getting my health back and presumably my levo right, but honestly, I don’t have anything left in the tank to put into extra training and fitness.

I’d really appreciate everyone’s thoughts.... what sorted the muscle weakness and tendon pain for others? Hoping my next appt with Dr T is more useful than my last 🤞🏻

TIA

[SlowDragon Administrator]

Make sure to include vitamins in blood tests

It could be low vitamins

Are you supplementing anything?

Presumably you always get same brand of Levothyroxine?

[Murphysmum in reply to SlowDragon]

Been supplementing for over a year now so levels all good.

And yes, always actavis 😊

[jgelliss]

My sympathy goes out for you . Sometimes we can over shoot our sweet spot . From my own experiences having either high T4 or T3 gave me shoulder pains aches and pain in general , fatigue , insomnia , sweating , palpitations anxiety . It would be very advisable to run labs with your FT3 FT4 TSH and see what needs to be tweaked . I would advice you not to shoot in the dark and try to get BW as soon as possible so you know how to go forward .

Best Wishes .

[genileris]

You sound just like me. I was feeling great on 1.5 grains of Naturethroid until I had knee surgery and saw a resumption in symptoms post surgery. My private GP increased (slowly) my dose to my current 2.5 grains. Some of my vitamin and mineral levels were disrupted by the surgery especially the anaesthetic. It took about three months to settle down as my dose increased.

I am grain, dairy and sugar free and rarely drink. Most will say diet is really key. Digestive issues can be resolved and I recommend a glass of celery juice on an empty stomach every morning. It helps repair the gut lining and rebalance the hydrochloric acid in the stomach.

I then started a very demanding job with a long 2 hour each way commute every day. Huge mistake! This just took a huge toll on my body and I’ve seen a return of symptoms in the last few months. I’ve quit the job, my health’s more important. Now getting back on track. It’s a balancing act.

[DippyDame]

I've just looked at your results from 2 months ago.....my first reaction is that you are not adequately converting T4 to T3. T4 is too hogh in range and T3 too low. You appear to have been working to optimise your vits and mins so that should have supported conversion.

I would suggest that adding a little T3 may be the answer but I'm not a medic...just referring to personal experience.

The thought of a daily 4 mile dog walk leaves me exhausted!

Dr T has now concluded that some people need T3! They do indeed and I'm one of them and currently taking 75mcg T3 -only daily! Pursue this with him.

Good luck

DD

[Murphysmum in reply to DippyDame]

Thanks for you response dippy. Don’t get me wrong, most days I feel like I can’t be bothered doing the walk but actually once I’m out and on our beautiful beach, I just keep going. So whilst I have no problem in doing this (and actually remaining awake and active for the rest of the day!) I still get muscle weakness and I’m not getting any fitter. My knee ligaments are very painful too. I have done this same walk (roughly) for the last four years and prior to me being ill last year, if I cranked up my pace or ran up the dunes, I would get fitter and lose weight. Not happening anymore 😢

I think I need T3 too and I wonder of Dr T was seeing how I would get on on the higher dose with a view to introducing T3 if this happened. Time will tell!

[DippyDame in reply to Murphysmum]

Love the thought of walking along a beach with dogs...I love the sea! Always wanted to gallop along the sea shore on horseback...bit late now!

Pain is a symptom of hypo as is difficulty in losing weight...I've recently lost half a stone which is a start.

My thyroid journey is typical of many here

I discovered I had the faulty DIO2 gene/homozygous ...after finding various titrations of T 4/T3 combo didn't help.

It was when I moved to T3 only that I noticed a slight improvement, but low doses didn't seem adequate.

I now take 75mcg at bedtime and that is working....may still need more. That need for a higher dose is the result of also having thyroid hormone resistance. Double if not triple whammy!

It's taken me over a year to work all this out...with much help from TUK. Before that I could barely function and only had diagnoses of Fibromyalgia and Chronic Fatigue which never convinced me, which is why I started "digging".

Are your vit and min levels optimal? That should support conversion, if they are and FT3 is still low then poor conversion and a need for added T3 is very likely...based only on my own experience.

I think what I'm saying is, take control of your health, read as much as possible and don't assume "doctor knows best". Sad, but true.

Hopefully Dr T will sort things out when you next see him....if not TUK members, with loads of experience and knowledge most likely will! I can vouch for that.

Good luck

DD

[Murphysmum in reply to DippyDame]

Ah, they beach here is lovely and it’s my therapy. Just me, the dog and the sea air - bracing or warm, it’s my relaxation time.

Thanks for your thoughts, I am very similar to you in that eventually after a year of extreme stress, my gp diagnosed cfs. I just wasn’t accepting it and I did indeed begin digging!

My vits and mins are probably fairly good now although there will still be room for improvement.

Thyroid hormone resistance... I will research! I don’t think I’ve come across that. Honestly, I grab onto any wee thing that may explain/cure/restore my previous health. I am so much more driven to get fit now having seen the other side of the coin.

I am totally in control of my own destiny now and in fact I always was a bit cynical of our medics (sweeping generalisation!) but now I’m terrible.

I hope too that Dr T will sort me out. At least as I’m seeing him privately I feel like I can be a bit more demanding!

Thank you

[Murphysmum in reply to Murphysmum]

By the way.. it’s never too late 😉

[Hidden]

You ask what sorted the pains out mine was switching to NDT,

no pains now just brain fog in the mornings.