I am wondering if its possible to feel as well on thyroid replacement as I did pre hypothyroid.
Just for background looking back 4 years ago I felt really fit and healthy,had plenty of energy, was going to the gym. Then the pandemic hit and my gym closed down and went bust. In June 2020 I finally started on Levo and naively thought taking a little white pill daily would sort out a few niggles with my health.
I must add I also have Fibromyalgia and get B12 shots due to deficiency. I also have joint hypermobility but in spite of all these issues I generally felt pretty good. These conditions well pre dated becoming hypo.
I dont know if being hypo was the straw that broke the camel's back. I follow all the advice on here regarding vitamins and minerals. I take Vitamin D and K2, methylated B complex, a seperate folate supplement as folate is often low, selenium. My B12 is very high due to shots. I eat a healthy plant based diet. I'm mostly gluten free and eat little dairy although my hypo isnt autoimmune.
The sad fact is I've never felt as well as I did in my pre hypo days. I've tried Levo, NDT and Levo and NDT together which gave me the best results. I've been back at a gym for over a year now but my enery levels are not what they were. Somedays I end up needing a nap which is most unusual for me. Its not menopause as I've been on HRT for 7 years now.
Do others feel less well than in their pre hypo days, do I need to accept this is my new normal or is it possible to feel as well as before if I get my thyroid levels spot on.
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Sparklingsunshine
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Sadly I've been hypo for about 9 years and I feel terribly depleted. Levo does nothing for me. T3 with Levo didn't help. T3 on it's own was worse. I'm now giving NDT a go.
I have no energy at all. Terrible aches and weakness in my legs and neuropathy in my feet. I too am on HRT and satisfied that it is doing what it is supposed to do. The idea of going to the gym makes me shudder, it would hurt so much. I am permanently tired but don't sleep well. I'm fat. I've lost all my fitness (used to ride a bike a lot, swim regularly 3 times a week and danced with hula hoops all the time). I can't do any of those things now.
The only improvements I've had is that T3 helps my brain to work properly.
Sorry. I have no hope to shine on the subject. You sound quite well to me. You can at least get some exercise.
Sorry to butt into the conversation/reply but looking at your symptoms which are fairly similar to mine, even though treated with T3/T4 combo, have you thought about getting tested for Sjogrens Syndrome? The neuropathy, no energy and muscle aches are a symptom of it, along with dry eyes etc. Just a thought....
This is what happened to me. Further diagnosing hit me with Sjogrens and Autoimmune Pancreatitis. High FODMAP foods kept triggering the symptoms you mentioned. I was gluten, dairy and sugar free and still kept having those symptoms. Within a week of going low FODMAP, I felt a rapid improvement.
No I haven't. I don't have dry eyes. I have increased my NDT dose by just 1/8th grain last Monday and today I do have a bit more energy. I've watered the garden, been out to buy compost and am now going out to plant and weed. That's a lot better than normal. I'm starting to hope that tiny increases in NDT will help me get where I need to go.
I've had a look at the symptoms. I don't have any of the dryness problems apart from skin, but that's a thyroid symptom too. Certainly no swelling of the salivary glands.
I will keep on with tiny dose increases and see where I can get too with NDT. Thanks for the suggestion though.
Perhaps you could consider how much protein your diet contains, and whether you eat sufficient complete protein and enough amino acids of the right type.
I do feel better than pre-hypo (and pre-everything else days) but I've been doing intensive daily B12 shots for nearly 7 years. It's taken that long for me. When B12/folate are off, my thyroid problems flare up. I started Levo in ~2008 and had many ups and downs, many more downs than ups until starting B12 and treating adrenal insufficiency. So for me everything has come down to frequent injections along with plenty of folate supplements, and of course getting on the right dose of thyroid meds (T4+T3), and good Vit D and iron levels. I'm still a work in progress and improving, but [knock on wood!!] doing much better than before. I hope that helps.
Definitely feel more like my ‘old self’ on combination treatment for thyroid plus optimal HRT and optimal ferritin, folate, B12 and Vit D.
I’ve had to swap x country running for spinning, as my knees not up to it (family hisory of osteoarthritis- so taking tumeric/ glucosamine etc to help with this). Regular pilates classes also helping with aches and pains…. I’d definitely recommend this as an alternative to the gym.
I am 100% GF as know this triggers my inflammation. I am a pescatarian & eat mostly ‘Mediterranean diet’.
How do you get on with the exercising? I'm 67 and notice muscle wastage due to weight loss and possibly due to some if my heart medication- thankfully no longer needed! I do walk regularly but would like to gently start with weights etc. Any advice?
Honestly,my only advice is try Pilates ( or yoga). I have a much stronger core from this and feel so much better. I don’t need to go to the gym as my arms/ legs are toned from Pilates. I have a spin bike for cardio but I only do cardio work if my energy levels are goosd. One thing I’ve learned from Hashis is to be kind to yourself and rest when you need to.
I have lots of muscle wasting due to various issues. No offense to Buddy but I am so weak i could barely do yoga even though i like it. I just started up at a gym & the trainer gave me a program with 5 min cardio warmup & then weight lifting on the machines (not free weights) at basically the smallest possible weights, and it was much easier than yoga.
With yoga, my arms were like jelly & shaking uncontrollably after 30 seconds. With the weight machines, i found it easier to do short bursts with rest, and not have to support my entire body weight. But i do plan to start pilates after i build up some strength. Just my experience
I do feel better. Mostly my mojo is back. The thing I notice most if the dose isn't right (still titrating up) is low mood. That's my marker. Like you I have another condition- mine is atrial fibrillation- thankfully in remission at present.
I think the fact it took years for me to get recognition and a diagnosis doesn’t help. (I have Hashimoto’s). Been diagnosed since 2016. T4 only was not good so I’m on T4/T3. It’s better. I have days where I feel quite human, but can still get a run of low energy/fatigue days. I have no idea if it’s other factors or just something I have to accept. It can be hard if I want to spend more time with my little grandsons.
You are right to ask this question. I hope you find something that might help to improve things for you. (I’ll be reading too) ☺️🧁
I believe it is possible but not without a huge amount of time, persistence and effort to make significant lifestyle changes and heal your gut. I do believe healing the gut and addressing stress are major contributions to healing but this takes time and isn't as simple and just drinking bone broth every day. I am on this healing journey and feel so much better but its not been without huge sacrifices and tenacity.
I have been reading all your posts, looking at your story really. I probably have a lot of questions for you. Recent blood tests etc but my interest is not from a perspective of thyroid knowledge or advice for that matter, as I still consider myself a novice, but more about the experience of hypothyroidism.
Can I ask what do you think the difference is between fibromyalgia and hypothyroid myalgia or even hypothyroid myotonia might be? To me the symptom picture seems remarkably similar, only there is an ‘admission’ of hypothyroidism in the latter two.
After spending more than a year on this forum I have come to realise there are definite ‘brands’ of hypothyroidism. Some suffer very particular symptoms, some a very wide range of symptoms, some suffer few symptoms but very badly and others a fuller range etc etc. I find I have suffered loads of symptoms at different times but I have a few I can now call my brand, or what appears to be my core symptoms - not the bland list we see on the NHS website for example, which I am definitely having lasting difficulty with. Thankfully vestibular stuff happens only rarely but it’s there, more as an on/off symptom mainly around changing doses. Two of my main problems are ease of energy depletion and muscle ‘stuff’. You might call this ME/CFS or Fibro but there are clear blood tests which say hypo and conversion issues.
Look just ignore this if it seems off. It’s just your initial question is so important. It’s like for me, I am an artist (still unfortunately unable to work) but it reminds me very much of the recurring question put to an artist, “When does an artist know when a painting is finished?” I have no doubt it is a very personal decision. Is there a question around “When will well enough be well enough?” I find I am so annoyed by being undiagnosed for so long and left to suffer but battling on, that even diagnosis has not been a good turn of events. Two years on and I am still reeling from that news and then the hopefulness dashed by embarking on a treatment regime, which so far has not been wonderful and which medics are remarkably recalcitrant about. However this forum has enabled me to remain optimistic.
I should probably have PMd you rather than putting this on the main forum but I think many others will be interested in your question too and what it stirs up!
Crikey this all sounds very philosophical but I think there is an important discussion and we should be thinking about this in light of endos wanting to remove treatment etc etc. It’s all connected.
Apologies if this sounds all over the place. It is!
My Fibro was diagnosed 18 years ago, when I was 36, so it predates my hypo diagnosis by 15 years. I had read that low T3 can mimic fibro symptoms so I was hopeful when I started on thyroid replacement that it might be that and not Fibro but although I've had a few improvements I've still got a lot of Fibro symptoms. Plus now got chronic vestibular migraine as well 😪
I've had low T3 and high T3 levels, tried both Levo, NDT and then both together and I still have pain, stiffness, tingling in my hands and feet etc.
Its difficult because of my hypermobility, underactive thyroid, B12 deficiency and Fibro to know which bloomin problem is causing the symptoms. They all intermingle, the joy of being me.
Yes I get you. I have been on the same meds now for about five months. I feel this has allowed me to look perhaps more clearly at my symptoms instead of just being overwhelmed by them. I have been waiting for the results of heart tests so I can be in a place to try T3 again. However for me there has been so much ‘muscle stuff’. I include my heart in that, having had a heart attack many years ago with no known cause. It was a further twenty years or so until my diagnosis of hypothyroidism; although the hospital had run tests five years before which showed conclusively hypothyroidism. No-one had the courtesy to tell the patient. So for me, including the rubbish about the ‘rule’ around subclinical, it has been very damaging, allowing me to deteriorate for a further twenty years (at least) with no diagnosis and subclinical getting ignored. If anyone had known anything about hypo plus symptoms it should have been picked up. However we know from our experience that the level of knowledge amongst medics (including endos) is dire.
The reason I asked the question was, I have been feeling better on the no change of meds but I am clearly not ‘well”. Honestly I have been glad to have this space and asking myself “Is this as good as it gets?” So your question kind of aligned with mine! I have a plan for ‘feeding’ my mitochondria in my heart. The up to date version/reasoning of my heart condition has been found in the mitochondria. It had no name at all when I originally was suffering from it. I seem to need for T3 due to poor conversion. Shoot you do not need all this.
Anyway I was very intrigued by your question, especially when much of your condition is also muscle centred.
I am also wondering if there is any damage through very late diagnosis, which may not be able to be rectified. Your history is pretty long too. Hence the question, is the painting finished and how happy might I be with the result - not very.
P.S. my very bad migraines were dealt with by a chiropractor. I do still get ‘silent’ migraine which consists of an aura which lasts about half an hour during which I become more and more blind. No pain at all now. Then luckily eventually it just vanishes and my sight is regained. Pretty frightening at first but it’s there in the literature (Oliver Sacks who also suffered migraine). I would not dream of discussing this with my GP. My optician tells me it’s because I am tired. Ring any bells?
I've had sporadic classic migraines with aura since adolescence but since being diagnosed as hypo I was finding they were getting more and more frequent. Then they started affecting my balance and I was dizzy pretty much 24/7.
So my Neurologist surmised they had morphed into vestibular migraines, where instead of getting headaches, they attack the vestibular system. I was sceptical but tried 5 different anti migraine meds and failed all of them.
However the 6th one, Venlafaxine has really helped. I've only had 1 migraine in 6 months and my balance has improved greatly. I'm not 100% and may never get back to how I was, but I'm pretty good most of the time, dizziness wise.
I just feel now my migraines are under better control that I've started noticing other areas that are not performing as well as I'd like. Hence my question about whether its a pipe dream to feel as we did pre hypo.
Yes. I am definitely not ‘there’ myself. Like you if one thing becomes better it allows other things on my interminable list to become highlighted. However I plod on. Not hurrying now as it’s just too uncomfortable. Right at the start on the forum I saw the advice to take it slowly. I wonder how many people are able to heed that? BUT also seen reports that things improve well after settling on a sweet spot dose. So I remain (mostly) optimistic.
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Over range t4 but still feel hypo. What to try next? 
Stopping NDT
Back to square one, I miss ndt so much.. 
Reasonable NDT increase?
