I've been on Levo since April last year. My history is sudden Subacute Thyroiditis post Covid19 in 2020
This left me with slight underactive thyroid hence why the Levo. Seems like I'm on the optimal dose now since smaller isn't working and higher dose just gave me hypo. I was told that if I won't have children, I can go on a trial of no Levo to see if my thyroid can function without it. I was only put on it because of the last stage of ST and pregnancy plans. Normally ST patients are advised not to take levo as thyroid should go back to normal function within 2 years. I don't have hashimotos either.
But at the moment, even though all my tests are correct and endo is happy with bloods results, i am still not able to lose any weight and my energy levels are not great. I can definitely feel a huge difference; no brain fog, depression, mood swings, still some constipation though there was a period of few months these were completely gone, no hair loss anymore and less leg and body aches. I also have no migraines.
But I can't do anything physical which gets me tired so much without being completely wiped out the next day. Today I'm suffering from a lot from pain, stiffness and some brain fog after hours of packing gifts to Ukraine last night. I am wondering if the weight will ever drop and will I ever be able to just simply get tired but recover the next day? I am being seen but Chronic Fatigue Syndrome clinic in April mononucleosis free years back but I can straight away tell that they won't follow me as they only follow patients whom have no other conditions which might have similar symptoms and i understand that my fatigue can be connected to under active thyroid. It's that kind of severe fatigue definitely a hypo symptom?
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bajmon
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I sympathize with you as you have a few things going on here that make it tough to see the wood from the trees. In my experience this means a lot of experimentation until you hit on the answer:
I would be inclined to look at the big picture with these problems. Given your exposure to coronavirus and its effect on your thyroid you could be experiencing long covid along side the thyroid issues.
The other day my wife pointed out some research reported on in the New Scientist magazine recently. The research has discovered people with long covid have a large number of micro clots in the blood stream, which result in poor energy levels, brain fog, chronic fatigue, as you describe. Certain blood thinners have been tried out on these patients , including aspirin. On blood thinners patients have apparently reported a significant improvement in cognitive function and energy levels.
Some other research as found a characteristic and significantly different gut biome in people with long covid. Though it was inconclusive as to whether the gut was out of sync before or after the fact. Given that there is a strong relationship between gut health and energy levels and cognitive function, the suggestion is that probiotics may help.
Also as suggested by others here. The Levo can itself cause these symptoms. I prefer the explanations here: thyroidpatients.ca/2019/11/... over the stop the thyroid madness explanations. But the conclusion is the same:.
If the aim is to wean yourself off the Levo, then sooner may be better. Otherwise you might find things better on NDT or adding some Liothyronine (T3).
It's hard to pin point what i causing which symptom. I have been suffering with chronic fatigue way before covid and any detected thyroid problems. It was put down to glandular fever but not followed as not much you can get out of a GP. Taking to Endo in Dec. she thinks i might've been having thyroid problems way before the Thyroiditis. I only had TSH checked free Ramirez in the last 10 years due to fatigue and it was always within 1.5. But i had other symptoms which are now give since I'm on Levo. I can't get a clear information wether fatigue post exercise, physical activity which are significant, not your usual physical activities in a stretch pace and moderation, can be hypo symptom?
It's very much part of Thyroid issues and can happen with hyper and hypo conditions in my experience.
I've struggled with my thyroid medication for two years since my thyroidectomy (cancer) and have a back drop of lymphoma (a second cancer) to boot, which makes it all the more confusing. What I have discovered is this:
Taking just Levo is dreadful. According to various papers you can't get every tissue in your body uniformly euthyroid on Levo alone. There will always be some that are hypo and some that are hyper. In short a high dose of Levo can force some tissues to go hypo because of the action of D3. D3 kicks in when T4 levels are too high to protect the cell nucleus from excess thyroid hormone (as per the link above). (Some sources talk about rT3 instead, which is the product of the action of D3 on T4) So on high amounts of levo the result is a mixture of hyper and hypo symptoms, such as heart palpitations along side chronic fatigue, muscle cramps and brain fog.
Once you mix T3 into the equation things like the heart palpitations and muscle cramps settle, so with a normal thyroid along side the Levo it is less likely you will experience this. Endos will tell you that the heart palpitations will get worse on T3, but this is not true.
Taking too much medication is just as bad as too little. Exertional fatigue will come on both sides of the equation and is worst when taking too much T4.
Another thing you can't get right on T4 alone is the circadian rhythm. thyroidpatients.ca/2020/07/... According to the link there is a strong peak in T3 when you are sleeping and research shows that people whose T3 rhythm is healthy live the longest. In my case if I take my larger T3 dose in the morning I get a energy crash between 2:00pm and 8:00pm, just when I need to be at my peak to put the kids to bed! T3 doses are usually split, so the recommendation I live by is to take the larger of the T3 doses in the evening. In fact I'm going to try taking the whole lot in the evening to see if that improves things for me because I still get a bit of a crash.
It may be that your circadian rhythm is out and that a small dose of T3 at about 9:00 pm would put things back in step and let your body heal after a day of exertion. A point to pick up with your endo.
The fact that your endo is happy with your results unfortunately does not mean much as most endos are not very knowledgeable when it comes to thyroid disease. Many therefore keep patients undermedicated on too low a dose. When optimally medicated on levo, most patients seem to have a TSH around 1 or lower, FT4 around 75% through reference range and FT3 at least midrange or 70-75% through range . High FT4 and low FT3 means poor T4 to T3 conversion.
Without knowing your free T3 and T4, there is no way of knowing if you are optimally medicated. FT3 is the most important result as it is the active thyroid hormone. If on levo only, you need to convert enough T4 to T3 for symptoms to resolve. If conversion is impaired - common in hypos - you remain hypo, even if your TSH is in range or your FT4 levels look good.
It is possible that you could go off levo and your thyroid gland would be able to function again. The only way to know that is to stop levo and wait for it to leave your body (can take up to four weeks). The idea is for your pituitary gland to sense the drop in thyroid hormone and start producing TSH. If the thyroid gland can respond, the pituitary gland will decrease TSH production once there is enough FT4 in the system. If the thyroid gland does not respond adequately, the TSH will continue to rise. But this will take several weeks to determine, so you would have to stay off levo for quite some time in order to give your body enough time to respond.
Even if your thyroid gland is still functional, once you add levo your TSH production and own hormone production will drop. So, if you are on too little levo for your needs, you could end up even worse than before. Hence the need to retest every 6-8 weeks and increase levo by 25 mcg until your TSH is around 1 or lower and your free Ts optimal. Unfortunately, many endos don´t do that.
If you do try to stop levo and end up having to go back on it, you need to make sure you are on enough. Many endos will only test your TSH, and few will test FT3. The TSH is only useful to determine if you are undermedicated; a TSH above 2 indicates that is the case.
"Can severe, delayed onset, post exertional fatigue, ever be a 'thyroid' symptom ? ... or is it a CFS/ME /'something else' symptom?"
I have asked myself the same question for years, and i've come to the conclusion that no one can really say one way or the other .
I definitely have autoimmune hypothyroidism.. started after a baby, had sky high TPOab and TSH was 5.7 then 6.8 ....so i don't have your doubts about needing Levo for life .. i know i do.
I have never had anything else like Glandular fever that can be associated with the start of ME/CFS type symptoms.
And i never had any problem with severe post exertional fatigue before i developed autoimmune hypo and went on Levo.
But then after i'd been started on Levo and most of my other hypo symptoms improved to a large degree, and i was able to be more active again.. i was left with the exact same problem as you describe .. I can do something involving lots of physical exertion one day , but i will be totally wiped out the following day , and sometimes for 2 or even 3 days afterwards. ....I feel like i have the hangover from hell , my brain doesn't work , and everything really hurts.
I never found a way to make it get better quicker once it happens . i just have to wait it out and write those 2/3 days off. Then i'd be OK again, and could work really hard .... until the next time i overdid it. Then bam ! ....need the next day or two in bed
I was told it couldn't be my thyroid because that was 'treated now' . i had tried 50 for 7 weeks ,then 100 for 5 months , then 150mcg Levo for about a year .
150mcg fixed most things , but not the post exertional fatigue .
I was reluctantly referred to the CFS/ME service .. (who were not remotely interested in my thyroid condition) as far as they were concerned it had been treated. so they accepted me. They didn't have any treatment to offer apart from a slightly tweaked version of CBT/Graded Exercise Therapy ( to help me address my presumed fear of exercise ... don't get me started on that .... suffice to say i found it bloody insulting) ...... it was useful to help me learn to accept the need to practice pacing my energy , and to avoid boom and bust. and achieve a more sustainable level of achievement and expactations.. but other than that ,,, ther was no 'treatment'.
I spent 15 years reluctantly believing i had a 'treated' thyroid problem ,and had coincidentally happened to develop something a bit like ME/CFS about a year after i started Levo.
Hmmmmm.
Then a couple of years ago i started reading about thyroid patients with the exact same 'thing' ... and found there are lots and lot of them.
I read all the transcripts of the GMC hearings for Dr Gordon Skinner , and all the Liothyronine Dossier (House of Lords), and lots of current thyroid research by J. E.M Midgley ( 'diogenes' on here )
Then i came here ,and found lots more people with the exact same thing.
There was post here a year or so ago, where somebody asked this question . and a few people insisted "No, that is PEM (Post Exertional Malaise) and it is specific to ME (or CFS/ME depending on your view of the terminology)...... but then about 10 or 15 thyroid patients said ... no it's absolutely not limited to ME.. i had it and it got better when i found my optimum thyroid treatment."
I never managed to get rid of mine, but i'm pretty much retired now so it's rarely happens anymore , simply because i rarely need to do 'too much' any more .
So it's not that much of an issue for me anymore .. in fact i'm not sure i'd even know how to adapt my life back to expecting to be able to work two hard days in a row . I'm too used to things the way they are now. I'm institutionalised into 'having something a bit like M.E'
Had i believed it could be improved by altering my thyroid hormone treatment 20 years ago i would have tried harder to fix it rather than learning to live round it. But i was effectively gaslighted into believing it was 'CFS/ME'..... and untreatable .
for what it's worth... if i had any doubts about my need for lifelong thyroid hormone treatment.. i would want to know for sure if i could be OK without it , and the only way to know is to try it out .... a flexible working thyroid is always going to perform better than a fixed daily replacement can .
But coming off levo to find out if your thyroid can really do the job by itself again , is probably a fairly long job .. even of it can now manage by itself ....it will presumably take months to sort itself out again after being on Levo.
So if you do ever try it , i reckon you should expect to need quite lot of support while you try it out , especially if you still have little kids to look after .
Thank you for this post. I really appreciate it. Looks like a lot of us could write a book about it. It's terrible that none can really help with it or want. I suffered from this type of fatigue for years. I have always put it down to CFS post glandular fever in 2012 but no one has ever suggested any treatment. It took me 6 months to recover from it and i had to cut my work hours to part time as i wasn't coping. I was only 32, very slim, active and only just met my current partner. But with time i turned to this moaning person with no energy, waking up in the morning already tired and very achy and stiff. Any attempt to see GP would end up with basic bloods and once the results came back "normal" i was not even contacted not alone checking other routes. I was getting colds, flues you name it few times a year. In 2019 sept. I got very painful shingles, then in March 2020 first variant of Covid and i have suffered ever since. I put on weight a lot, i could not walk up the stairs i was do exhausted and short of breath, my hair was falling out so much i got scared, i was very moody so i went to GP again in July 2020. Results were good so no follow up and i was feeling worse and worse. Just before my 40th in Nov that year i found a lump on my neck which was painful and by the end of Nov and was crying from pain and i had 3 massive nodules on my right thyroid. Lots of tests, scans, FN biopsy, several private consultations because NHS Endo wanted to send me straight away to have thyroidectomy. I don't even want to go there and talk about the trauma this caused me when they sent me an email to tell me this could be cancer. I'm still traumatized. I refused the surgery and listened to my gut feeling. Finally in Feb 2021 i pushed to get steroids prescribed and it worked. I finally had Subacute Thyroiditis confirmed, something i was suspecting from the first scan 3 months earlier. They made me believe i might have cancer for 3 months and i diagnosed myself in 5 minutes with Google! I was offered levo only because i still have baby plans but I'm not pushing on it. I wasn't planning to have family because i want coping physically. Hour could i get though pregnancy and look after a child if i couldn't even go on a hike. But not i have the last chance so it will be what it will be at this age. So when i was recovering from thyroiditis, i test about it a lot and everyone was saying that you should not take levo for this condition as you thyroid will most likely revive. However apparently it's best to get TSH to 1.5 if you're planning pregnancy and at that point i was 40 years old with TSH 3.6. I didn't know what Levo was, i was just desperate to feel better after so many months of pain and i was told it'll definitely improve my symptoms. I was started on 50mcg daily and after about 4 weeks i felt like newborn! I couldn't believe how the brain fog suddenly lifted, how my memory improved, i wanny achy as much and mostly, for the first time in years i want emotionally numb and depressed. This didn't last long, about 2 months later i had to take time off work again because i wasn't coming mentally again, i was emotional, very tired, achy but my Endo have told me this isn't thyroid related as I'm being treated but these were the very symptoms he put me on levo in first place! I went abroad for few weeks, had private tests, i was even checked for Lyme disease. Iwas low on vit D so i started taking some but my fault, i wasn't sticking to it. But i felt much better there. I think just before the trip i was out on 50/75 mcg on alternate days. I want feeling as great as on first weeks of levo but i was coping. Then suddenly in Dec/jan i started to get symptoms again. Hair loss, constipation again, more weight gain, brain fog, fatigue, very emotional. I went to see another Endo and she put me on 75 6x/week and 100 on Sundays. I went from TSH 2.96 in Dec to 0.18 on Feb and i felt so angry all the time i had constant palpitations that again i was off from work again for 2 weeks. I went to see this Endo again and at first she thought i was all great until i asked her "are you sure with TSH 0.18?). She had a look again and decided to put me back down to 50/75 only. I've been back on this dose for only 2 weeks. Palpitations are only occasional, I'm definitely calmer but constipation is a problem and obviously the fatigue. Is a nightmare. I am just so tired of not being able to live normal life or lose any weight. How can i lose it if i can't exercise?! I am the same as you, i suffer for 2-3 days if i get overwhelmed physically or even stressed a lot.
Funny you should say that about 'even stressed a lot' , I (eventually) realised that fright / fear / adrenaline / big arguments with stompy teenager etc etc would bring it on the next day too .. without any physical exertion being involved at all . Took me a few years to figure that connection out though.
I guess i was lucky in that i'm one of those unusual hypo's who never put much weight on, so having to get rid of it wasn't an added problem .
With hindsight ....I don't think i would consciously choose to have a kid if i knew i would be like this for 20yrs while i tried to bring it up ....... i was perfectly fine when i got pregnant .. and then this happened .
However.. 24 yrs later , i can honestly say . "No children were harmed in the making of this commercial" .. we all managed , we even had quite a lot of fun .
The kids got used to the fact that mum went 'bleugh' after driving the van to Cornwall for the holidays , meaning they had to put their own tent up and make pot noodle for tea and make some 'campsite' friends the next day without anybody being allowed in the sea till mum was capable of getting out of bed and speaking .
My obvious limitations made them quite self sufficient in some ways , and quite understanding and tolerent, (apart from age 14! )...... We were never going to be well off , but money isn't everything.
And 'it takes a village to raise a child' .. so if you do get yourself a child to bring up .... just make sure you choose friends who will make a good 'village' .. and all will be well , even if you never manage to 'fix yourself'
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