Forgive me, I’ve searched about this but I can’t find anything.
I’m currently on 60mcg T3 only a day. I’m fairly fit - I walk 5/6k every day over dunes and woodland though I wouldnt say I’m cardio fit. I did do the couch 2 5k last year though.
I’m suffering from really bad breathlessness at the moment that’s lasted for a few months now. At first I just put it down to lockdown, a reduction in exercise levels and carrying a few pounds extra - aren’t we all! However it’s not shifting.
I can’t really walk at a reasonable pace and talk without sounding like I’ve just climbed a flight of stairs, in fact I sound like I’ve climbed three flights just going upstairs in the house!
I’ve got an iron panel test to do on Monday but I wonder if there’s anything else I haven’t thought of. Does T3 cause breathlessness? I’m on a higher dose now than ever but my levels are good and not too high. I feel fab otherwise - I just feel like I need to get fitter, despite trying.
I just sat for a meal and a beer in the local pub with my husband and on walking the roughly one mile home on a fairly flat road, you’d have thought I’d just run a marathon. It’s really starting to worry me.
And no, I haven’t had covid!
Thanks 😊
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Murphysmum
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Does it feel as if you are out of breath (like running up stairs) or can't get enough oxygen in your body no matter how still you are & how deep you breathe?
Eek. A bit of both. So I get out of breath when normally I wouldn’t, like walking up the stairs, or just bending to put my shoes on! However, when I’m out exercising like on my walk and I climb a big Sandy hill off the beach, I cannot get enough air in my lungs. I feel like I’ll be able to take a big deep breath and it’ll help but it’s not enough.Does that make sense..?
I am the same as you , I was diagnosed with AF , now on betablockers & blood thinners . Do you have a blood pressure monitor ideally one which tells you your heart rhythm is out of synch? You don’t always feel your heart racing I never did my heart rate felt fine to me but you could see the vein in my neck working overtime .
I do have a bp monitor and it’s slightly high atm, but nothing major. It doesn’t tell me that the rhythm is out of sync but my watch would, although maybe that’s something I should get checked properly, thanks.
My heart rate has always been low, and no, I don’t run marathons if it’s not apparent already.
I think this is a thyroid thing but even when I’m properly medicated it’s still low. I do get lots of skipped beats and palpitations though - worse if not optimal and worse depending on my fluctuating hormones!
Hi, how are your folate , b12 and vitamin d levels. if i’m low in any of these or my thyroid meds are wrong - i tend to get out of breath easily and heavy limbs and exhausted . low folate in particular also gives me heart palpitations and missing beats and anxiety feelings .
i’ve never had the feeling of the gasping for breath and not getting enough breath though . that sounds like something that’s needs checked with a gp .
I take T3 only , AF - Atrial fibrillation when your heart rate is erratic & you get palpitations.
I’m on blood thinners to keep the blood thin as AF can cause clots to form which can be a killer . Beta blockers calm the heart rate so it’s not racing all the time
Thanks for clarifying, have you ruled out what has caused your AF as I noticed when I was on T3 only and my TSH was more suppressed it did trigger my heart symptoms and being over medicated might be the issue.
My heart definitely doesn’t race? As I’m likely to need surgery on my hip soon I’m now thinking this is something I should get checked out but mine skipped beats and palps seem related to low(er) T3 or my cycle.
Hi, sorry to be pinning myself to someone's question but the air hunger, is this hypothyroidism? I've had that since I was a teen and much worst in last 10 years. I recently went through terrible case of Subacute Thyroiditis and this is the first time when I was told I have hypo. I'm on 50mcg I feel better but went for a swim yesterday and as always before, I had to stop and quiet get that air in my lungs. Then I try to yawn but that isn't working either until I relax and I'm able then to finally get air. I use to get that more often but my Endo days that I don't have Hashimotos and my past symptoms were probably chronic fatigue 😣
Yes, hypothyroid. Either undiagnosed, under medicated or ineffective meds (for a variety of reasons).
Air hunger is nothing to do with the breathlessness induced by low iron, etc. It is a feeling of being able to inhale deep breathes but unable to draw oxygen from that air. It is a horrible & unique feeling. It always made me gasp for more air.
Sorry you have experienced too. Maybe time to assess meds?
Thank you. I've been experiencing this for years. Once it lasted for 2 months every day. It was horrible. I saw a GP about that and I was told this might be some infection which was a nonsense. I've been on thyroxine for only 3 months which will go up after next Endo appointment.. but I was told that my Subacute Thyroiditis was caused by viral infections swoich tbh i didn't have prior to that. And because it was ST my hypo is temporarily and levels will go to normal but the more I read the more all my undiagnosed symptoms, which I've been suffering from for years, show that I've been hypo all those years. Can get diagnosed .
I’ve had this in the past too - but it’s very different. I’ve wakened at night having taken a huge gulp of air… My breathlessness now is on exertion but very little!
It is not like a shortness of breath as in asthma or laboured panting after running but to take huge, long, slow, deep breaths with the inability to draw any oxygen.
Known to people who have suffered as ‘air hunger’, but seen as a completely 'made-up-attention-seeking-ploy’ by doctors, I found the most worrying part is mine did not show up in readings on a oxygen saturation machine, or (london81 ) a 24hr ECG monitor. Maybe it has to get to a critical stage?
Dr Lowe mentioned it as air hunger, also known as dyspnea in his book The Metabolic Treatment of Fibromyalgia. He claims there are four known causes that are the result from inadequate thyroid hormone levels:
1. Weakness of their respiratory muscles, including the diaphragm. Researchers call this weakness of respiratory muscles "hypothyroid myopathy."
2. Impairment of the phrenic nerves that regulate contractions of the diaphragm. When impaired, these nerves send too few signals to the diaphragm for it to contract normally.
3. A decreased "central drive of respiration.”. This means that the brain centers that regulate breathing are impaired by too little thyroid hormone regulation.
4. An abnormal heart and lung function. Some patients suffer from air hunger only when they to exert themselves; others do so even at rest.
I don’t know where I have saved this article from but it’s dated 25.02.2005 and titled ‘Air Hunger To Death: Breathing Problems for Hypothyroid Patients’ by Dr Lowe. shaws might know?
I have previously experienced air hunger at various times but the most disturbing was during the night which I guess was a type of sleep apnea. I think Dr P refers to it in his book but am not sure because I have lent my copy out atm. I also once found a FaceBook group but it has since disbanded. It is just yet another example of bodily systems working out of sync after years of low thyroid hormone, or adequate present but ineffective levels.
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Acute respiratory alkalosis associated with low minute ventilation in a patient with severe hypothyroidism.
That's really informative I suffer from this and the doctors fobbed me off years ago as I was only young in my 20s and one doctor just said it's exercise induced asthma and iav even been fobbed off with anxiety !
but then it's got worse and I also experience sometimes at night when iam trying to sleep it sets off my heart pounding or very faint happens both ways like laboured breathing something heavy is sat on your chest and when I go up stairs I am out of breath. I ended up in A and E it was that bad at one point as it wouldn't stop and they referred me to cardiology but nothing showed up and the cardiologist was rude, ignorant and had no clue what I was talking about as I also thought it was similar to high blood pressure symptoms which happen with insomnia aswell. So got no where and still struggling to cope with all these symptoms.
I am only 48 kg and I have an active job but it's so interesting you shared the Dr Berg video as I have suffered with stomach acid issues and they have got severly worse my breathing issues since an acute severe helicobacter infection I couldn't shift for a year was horrendous ( the gastro specialist thinks as I have high stomach acid) but after no improvement to my stomach issues I am now seeing a naturopath who thinks I have low stomach acid and got me to have my cortisol levels tested and they are high ( but not high enough for the NHS to take notice I.e. Cushing's) so there is definitely a connection as my symptoms are frequent now. I use the lift at work and only use the stairs walking down as it sets my heart off and my breathing and avoid walking up steep inclines etc.
What have you noticed has help reduce your symptoms and did the NHS take notice in the end?
Also I have fibromyalgia so I must get a copy of Dr Lowes book Thanks for that info!
Sorry you to hear you have suffered so much. It is very frightening because virtually unrecognised except by sufferers.
There is little research into air hunger & the little there is appears old. Dr Lowe's explanations seem perfectly credible, especially as in the text he has quoted numerous references, but I offered the YouTube video because low stomach acid & cortisol issues are something many of us share & given the lack of literature on air hunger we need to consider every possibility.
You won't find a copy of Dr Lowes book except for hundreds of pounds if even available as it went out of print years ago. I don't have one but you can find various pieces from it on the internet if you search. shaws is always quoting from him.
I only suffer air hunger when my thyroid hormone levels are low, so it may be an indication to you that your meds need assessing. If you have any test results to share complete with ranges (numbers in brackets) in a new post, members will comment?
I wish I could find out how to get access to J.Lowe's archives on demand!He is always informative & always makes sense in areas where others are clueless.Dr Lowe & Dr Berg are not medical doctors-funny how they seem to get this stuff in a way the vast majority of MDs dismiss?
Do you suffer from hay fever, asthma or allergies Murphysmum? I get breathless when walking through fields at certain times of the year. I use an inhaler in the summer to alleviate this. It may be worth asking at your GP surgery for a check.
i have the same ( especially running up stairs), despite averaging 15,000 steps a day which includes running 3 x per week and walking loads. i have sufficient iron and my ft4 and ft3 are at top end of range, my vitamins are optimal too.absolutely no idea! following with interest
I mean, it’s something as I’ve been in this position before - same dose, same weight, same level of fitness etc etc and not felt like this. I remember going through a phase like this ages ago when I was still on levo but I never identified what caused it. I’m not sure it was ever this bad though.
i have recently had a 24hr ECG monitor and i’m waiting on results I will let you know if anything of note comes up ( although i had palpitations when my ft4 fell to 4% and they have disappeared since my ft4 has risen so i anticipate t3 is not the cause)
That’s how I got diagnosed with Graves. Breathless going up the stairs at home. I’m not saying that this is u but it made my exercise induced asthma worse. I had the coughing after I did the exercise when my heart rate was coming down. Weird and random.
Thanks. I’m wondering if I’m over medicated… my last bloods were top of range but not over and I felt fab but maybe I’ve crept too high…. Sigh, maybe time to reassess dose again
60mcg is quite a lot of T3. Even if your results showed top of range the chances are you were over-range during the peaks. If you keep saturating too much the cells become resistant and then you need more & it becomes a vicious circle.
SHBG is a protein secreted by the liver in response to sex hormones & thyroid hormones.. It may be worth you having SHBG measured as this will increase with elevated T3 and be encouraging higher testosterone, etc, If you have low cortisol issues this could also be elevating oestrogen which would increase SHBG further & risk binding too much T3. This would make your T3 unavailable for use.
I get air hunger when under-medicated or when meds aren't working effectively.
My cortisol has been checked and is fine, but I do struggle to keep estrogen in check. My progesterone was low though in range the last time it was checked, testosterone below the lowest point.
From reading your comment am I right in taking away that increased SHBG would potentially increase testosterone? In which case it must be very very low!
No, not necessarily. It depends on if testosterone was tested whilst you have been medicating this high dose of T3.
SHBG binds three sex hormones, oestrogen, dihydrotestosterone (DHT) and testosterone transporting them around the body but also is secreted by your liver in response to thyroid hormone.
Elevated oestrogen will also encourage further TBG. Same theory as above just different transport carriers and the reason why people taking HRT often have to increase thyroid meds.
You definitely don’t need to increase your meds but if TBG became elevated to match oestrogen levels it risks binding too much thyroid hormone. If you reduced your T3 dose TBG levels should correspondingly decrease as well.
Of course this is speculation and it would useful for you to have up-to-date sex hormone tests to eliminate these causes for your air hunger. These are pretty standard tests & considering your oestrogen issues perhaps you could ask your GP to retest everything?
It’s quite scary how reliant I am on the of cream to aid my thyroid uptake, I think I need to re read your comment again to properly get my head around it but that sounds like what you described could be happening?
And I’m certainly on more T3 now than ever, although most of that time was spent titrating up with minimal pg replacement. I’m fairly confident that I need around 50mcg and last time I saw my endo she was happy with that too.
I need to speak to the gp regards hormones but I keep putting it off, both from the point of view that I’m scared they won’t appreciate the interaction between the two, and also that they’ll meddle with my T3!
If you are in the first phase of perimenopause, your progesterone levels will naturally decline & you’re doing the right thing by using progesterone cream to replace, as unopposed oestrogens can make us feel quite unwell, and as already discussed be quite obstructive regarding how our thyroid hormones work..
If you are still pre-perimenopauasual it could be tired adrenals are sequestering progesterone to help make up the shortfall in cortisol. This would still need progesterone replaced but also adrenal supports. If cortisol was tested by serum blood it only gives an idea of adrenals maximum output and not circadian behaviours, so if you have saliva results they could be helpful.
To help the liver deal with excess oestrogen you could supplement milk thistle or some other liver clearances. Diet is important as balanced blood sugars will not only help with detoxifying oestrogens (glycogen is necessary for the production of glucuronic acid), but help T3 work more effectively in entering the cells.
Now you realise you may be overmedicated, if I was you I wouldn’t worry about testing at this stage but just reduce meds to a more sensible level and hopefully symptoms will abate over the next few months. I would put a date in the diary for say 4-6 months and if air hunger was to be still hanging about, then it would be time for investigative tests.
Meanwhile, good diet, optimising iron, nutrients, adequate sleep, the odd beer & pub lunch 😍, and everything else that works towards making thyroid hormones work more effectively.
Thanks radd , that all makes total sense and although I’m not particularly unhealthy at the moment, I can definitely do with cleaning up a little bit. The milk thistle is a good reminder actually, I used to take this a few years back and I stopped… I hadn’t really thought of it to remove extra estrogen so that can’t be a bad idea.
I’m going to do exactly as you suggest. I’ve taken my iron panel bloods this morning so hopefully in a few days I’ll see what those are. Funnily enough I’ve been thinking about it and tallying up the little things I had noticed recently. The breathlessness is the main one which I hadn’t linked to over medicating at all, but others are my eyesight (which goes a bit wonky if I’m taking too much), the occasional period of feeling “over” and also going bright red on drinking alcohol which I believe can be a low folate thing. So I’ll work on the basis that I need iron and some b vits (amongst other things), and I’ll reduce my T3.
Hopefully I’ll be sorted soon but if not, agreed, new bloods and a follow up.
Hi radd, could I ask you about SHBG mine was one of the tests that was over range in March I'm post menopause but being as it was private bloods done my Gp and Endo not interested what else should I be looking at on my results to understand it more I had many tests done including sex hormones free testosterone calc cortisol seemed to be under range it was flagged up not started my T3 yet as I'm still not sure this fatigue I have had for long while I seem to convert well on Levo only but feel absolutely crap I get air hunger on n off always wondered why
You can have great labs but still feel symptomatic if thyroid meds aren't working great. Common factors influencing effectiveness would be inadequate iron, nutrients, cortisol, bodily inflammation, imbalanced sex hormones and ongoing gut issues.
SHBG it is a protein transporter that regulates itself according to amounts of sex hormones, but having a stronger affinity for testosterone.
However, it is also regulated by thyroids hormone, ie reduces in hypothyroidism (or under-dosed replacement meds) and increases in hyperthyroidism (or over-dosing replacement meds). Other reasons for increased SHBG are pregnancy, over replacement of HRT or long term oral contraceptives (ie elevated oestrogen’s).
Therefore, if your SHBG was high but testosterone & other sex hormones in range it would be prudent to assume a possibility of elevated thyroid hormone. Are you medicating T3 as this appears to be particularly influential on SHBG?
I suffered the opposite on under-medicated & ineffective Levothyroxine, when reduced SHBG induced elevated testosterone (too much free). This was rectified by adding O & P in the form of body-identical HRT which increased SHBG, reduced testosterone levels , corrected low mood, improved bone growth and encouraged better workings of thryoid meds.
There is also a strong link between SHBG & PCOS but I can’t remember what it is as don’t have PCOS. Hope all this helps 😊
Thank You radd for your reply I'll have to digest it n try understand it I couldnt understand the results with sex hormones and SHBG it took me a while to understand thyroid results ive not started my T3 yet as my gp is going to do an ACTH test for me which is what I wanted my nhs Endo to do before I start my T3 as I do convert pretty good so gp being helpful and testing adrenals this fatigue is overwheming hair loss awake every 2 hours just started iron tablets low end iron results ferritin been high since Sept but it's now dropped in April so lots of things could be causing this horrid fatigue it's at its worst
Ferritin isn’t always a useful indictor for iron levels because is influenced by many factors, but because yours has suddenly dropped ensure your GP gives you a FBC (Full Blood Count) to eliminate anemia, which would contribute to ongoing fatigue . Are you supplementing iron on an iron-panel result?
Apologies for asking if you are medicating T3 when you had already stated you haven’t started.
Sorry to digress a bit but on reading your comments here I looked back on my hormone blood results from around this time last year.Sadly I hadn’t chosen a test that included progesterone but as I’m supplementing that and feel better with it, I assumed I need it and I’m not over doing it as I have no signs that I might expect if I were.
Maybe you can comment if you’re able on my results here @radd?
My FT3 at that point was 5.5. (Range 3.1-6.8pmol/L) and my TSh was suppressed as always at 0.012.
Yes, I’m on T3 only, so indeed that why the suppressed TSH and thr complete lack of T4! I’m not without a thyroid but I suspect it’s pretty dead going on these and other labs.
Ink Any thoughts on the sex hormones which I guess what what I was more interested in following your reply to GSD?
I have more recent thyroid bloods btw, just in case anyone thinks I haven’t checked since last year!
Hi Yes I have had FBCs few times GP says no anemia but my Endo said your FBC Haemoglobin results show no anemia but my ferritin has dropped my iron panel test showed low end range iron so he told me to take ferrous sulphate I had the iron panel test done by Medichecks as Gp only does ferritin with FBC and as I said ferritin has been high but within range since Sept last year something I never have only if I supplement which I havent.. but it's only just now dropped to 77 range 15-300 My T3 10mcg was given to me this month by NHS Endo but I havent yet taken any as I wanted to check my adrenals so my Gp is sending me for Acth test , a private Endo I went too in March said it was imperative they were checked but unfortunately the blood tests had to be done up St Mary's Paddington and it was impossible to get the bloods done local to my home in Essex so I finally got to see my Nhs Endo afer 15months of cancelled phone appointments but I told him I had to go see a private Endo as I have been really unwell but no adrenals to be checked just added T3 so my Gp is going to get the test ordered and I'm to show Endo the results
Hi. I couldn’t comment on levels as I don’t have that kind of knowledge sorry. I am very fit and all I could think at the time was “I’m so unfit I need to hit the gym harder”. Turns out I had Graves. Became exercise intolerant. Good luck. I think your answer is in this post somewhere 🥰
I had this, yes it's very frustrating and scary the docs didn't know what it was and put it down to "psychological infuriating to say the least! I think I was over medicated, then my Endo reduced my dose from 15mg carbozimole to 10mg Carbozimole and fingers crossed I haven't had it return🤞 hope this helps.
I haven’t read through all the comments so it might already have been mentioned, but i have heard that we sometimes have higher thyroid requirements in winter so it might be that you would benefit from slightly reducing in the summer. As an aside i remember reading some of your posts a couple of years back. You mentioned heavy achey arms etc. Has this improved for you with T3?
You could be right on the dose reduction thing. I’m about three days in from dropping it a bit and the breathlessness is better, so hopefully I’m on the right track. I’m still finding other symptoms though so wondering if it’s a combo of too high a dose and maybe some iron issues. We’ll see.
With the muscle weakness, yeah….! It hasn’t totally gone but I have spells where it goes completely. I’ve yet to identify why that is. I can’t pin it to anything. Sorry, that probably doesn’t help?!
Thanks. I also get the heavy arms. I am about to start a trial with t3 and am hoping it will help, but also realistic that it might prove more complicated. I remember getting a bit breathless when my ferritin was low in range.
I get this too!
I often feel like I can't get the air into my lungs. It feels like there's been an elastic band tied round the bottom half and I will never be able to get the air in.
I only get it when I'm moving though; walking up stairs, just pottering round the house; general life!
Never get it at rest or lying down. In fact, when it gets too bad I take myself off for a lie down to get the air in to prevent hyperventilation.
This post really interest me. As I have breathing issues exactly like this since just before I got diagnosed with Hypo. It comes snd goes over the course of the year. A few years back they said it was COPD but it’s not f do o that hit removed off my record. At the beginning of the month o had to attend a breathing clinic I have had yet another chest X-ray more bloods done and waiting of all results .(I will iodate once I know) I am not overweight, I am active and I have never smoked. I have had test done and I am not asthmatic neither
I get extremely breathless going up stairs or walking uphill. I can walk on the flat without too much breathlessness. I ride a bicycle and can cycle uphill without too much breathlessness, it’s strange! Thyroid levels are fine at the moment. I did have respiratory tests and they said it’s COPD, still waiting to get any treatment for it.
This sounds very similar although I do notice that I get breathless if I walk and talk, even on the flat. This is the thing - I KNOW I’m not that unfit.. it’s definitely caused by something
I really feel for you, I had this for a few years, it's horrible, so debilitating.
After lots of tests, heart, lungs etc. All ok. The ear nose and throat consultant confirmed that I have Hashimoto disease, did an investigation procedure and found that I had an infection which was affecting my vocal cords and breathing. I presume that it was caused by my acid reflux. I believe that I am also lactose intolerant as after eating dairy, I get mucus build up and my glands by my ears and throat swell up, which maybe a contributing factor. After he cleared this I could breathe as normal , literally the same day. I also have a small goiter with nodules, but don't think that it was that. I hope that this helps you.
You may already be aware that 25mcg of T3 is approx to 100mcg of levothyroxine and were you prescribed the 60mcg of T3 you are taking? You are taking approx 300 plus of thyroid hormone replacements. Some people think that levothyroxine and liothyronine have a similar affect. Levo is the inactive hormone. T3 is the active hormone required in all of our T3 receptor cells and brain/heart have the most. 25mcg of levo doesn't have the same affect as 25mcg T3.
Thanks shaws , I did know that but to be fair I hadn’t thought about it recently. Now that you point it out, I am taking rather a lot more than I ever took levo. Although it didn’t work so… 🤷🏼♀️!I am under the care of an endo but haven’t seen her in over a year due to you know what. Maybe time for a catch up.
I’ve been doing fairly regular bloods and the last ones were top of range but not over.
I really need to speak to my gp too as I’m finding that fluctuations in my hormones due to my cycle are seriously impacting my thyroid. For example, I started taking progesterone cream a couple of years ago to combat estrogen dominance. It helped and so later last year I decided to drop it and go “au natural” as it were, to see where I was. Within weeks my symptoms (thyroid) came back snd I was really unwell. It took me a few weeks to click, but once I reinstated the cream after a month or so I was fine again. I feel that this reliance on the pg replacement can’t be good but I’m kind of in a vicious circle. I have low testosterone and still suffer with bad muscle weakness although recently that had gone. This lead me to think that the dose I was on was good, but now I’m wondering otherwise.
Sheesh, it’s all so complicated - I feel like I don’t know which way to turn and yet I’m so close to feeling really well continuously…
I suffer with breathlessness too but found my folate levels were very low gp prescribed 5mg folic acid and this helps. I cant seem to keep my levels up without the 5mg dose. I tried a lower one and they dropped again. Worth checking folate and b12 levels.
this is me too. i’m on constant 5mg folate . when they take me off it , it drops quickly and my exhaustion, heart palps and anxiety kicks in , the heart palps are now my tell take sign for low folate and within weeks of being back in it , the symptoms go away . don’t think i’ll ever feel fighting fit anymore , but keeping my thyroid , b12, vit d and folate all at good levels is 80 percent of the way . completely changing my diet ; getting myblood pressure down and exercising is what i need to concentrate on after that , especially with hashimotos . i did the fast 800 and tre for 4 mths and saw my energy levels rise a lot .
I don’t think I’ve seen any mention of B12/folate deficiency here—apologies if I’ve missed it—but both or either of those can also cause that feeling of not being able to get in enough air.
The other thing is iron deficiency.
Do you have recent vitamin/mineral blood test results?
I was thinking the same thing Jazzw Having Hashi & PA I always think B12 before thyroid when it comes to shortness of breath. My breathing is always bad in the run up to my B12 injection or if my folate levels need attention.
Do you have any other “usual” symptoms with your PA? By that I mean, that you experience and know that’s likely what it is?
I’ve always wondered about PA but when I’ve asked the gp to test for it in the past I’ve been dismissed out of hand.
I do seem to suffer more odd things when I haven’t specifically supplemented with b12 for a while. I guess this could just be down to our poor gut function as hypos, but I’d be interested to hear your thoughts as someone who suffers from both
Oh the symptoms are quite wide ranging really. Not all at the same time anymore but maybe one or two return around week 4 or 5 if I forget to do an injection myself. (GP injection is every 8 weeks) To name but a few
Breathlessness (especially if folate is also low)
Swollen tongue, numb face, slurred speech
Loss of words
incontinence
Pins & needles
Numb legs, stomach, fingers
Tinnitus, already permanent but gets much louder.
Brain fog too so there are probably a few I've forgotten.
They do tend to ease within a couple days of an injection which why I associate these with PA rather than thyroid. Obviously they are only personal observations so could be completely different for other people.
Have you changed to another make of T3? Or maybe there has been some change within it.
Trial one anti-histamine tablet and see if that relieves your difficulty in breathing. Dr Lowe stated that if the person has relief after anti-histamine they would have to change to another brand.
I also have Hashimotos and also mast cell activation syndrome. Air hunger is common with MCAS and taking 10mg of Zyrtec twice daily and 20 mg of Pepcid twice daily helps my breathing. Mast cells can trigger the autonomic nervous system to function improperly. Being over medicated on thyroid replacement just aggravates the nervous system more.
Have you had your b12 & folate levels checked? Air hunger/breathlessness are typical symptoms of this kind of deficiency....I am on b12 treatment, I was deficient in both b12 & folate, and my breathlessness & air hunger improved almost immediately on starting treatment.
Low B12 can have breathlessness as one of it’s symptoms. It was one of the first ones I noticed. Late onset asthma is another possible cause. Maybe get a detailed blood test, checking B12, folate, ferritin and VitD levels? Or see if you can see your GP? ( Not easy at the present time I know!)
I have heart palpitations, breathlessness and dizziness with mild exertion (stairs, blowing up an inflatable etc) or anxiety and a complete ‘wobbly can’t get up’ after longer, very mild exercise (walking around shops for an hour or so) but this has only been since getting Covid last September. I have heart investigations coming up and referral to long covid team. I take levo but started T3 combination in June.
That gave me more energy to try to exercise etc and found I just couldn’t because of the breathlessness, heart and dizziness so went back to GP. Writing this has just reminded me that random and severe dizziness was one of my main symptoms pre-diagnosis 3 years ago actually but GPs said it wasn’t connected (disappeared after starting levo though).
As to shortness of breath with exertion or air hunger as mentioned above, mine is air hunger on exertion or anxiety (nothing like suspecting heart issues on top of thyroid to add that gen in the mix 😂).
dizziness can definitely be a symptom of hashimotos or low thyroid or low in anything else like iron b12 or folate / when ever one of my levels isn’t right, i get light headed / dizziness and nausea . when the bloods are fixed these symptoms go away . everyone is different but you have to listen to your body and look for common symptoms . gps defo don’t know everything , i’ve learned that the hard way and now i ask for a print out of every blood test i get done and keep them in chronological order . it’s helped me link symptoms and helped me to take control to know when i need to ask for a blood test and what for x
I am a fan of the actions of the Vagus nerve - coming from the old part of the brain. I did a search for an appropriate link but there are so many. The vagus nerve wanders through the body and does seem to have an effect on the breath.
Over the years gargling and singing along with certain yoga breathing techniques - Uijay breath - have become weaker. I am T3 only ... All those actions stimulate and involve the vagus nerve so am guessing my vagus nerve is not up to speed. Could do better - said the school report !
When im drinking from a bottle of water i feel like im running out of oxygen, i gasp for air within 4-5 seconds. My iron is normal but I have a small MCV blood cell size. My oxygen levels are usually a little low between 92-96, i check my oxygen level with a oximeter. I find deep breathing exercises help in a general way
Yw hope your symptoms improve. I just read your profile and noticed a couple of your symptoms are the same/similar as mine.
I also have a low heart rate but not as low as yours ! 30bpm is pretty crazy, lowest mine goes is mid 40s.
Mirgaines were probably my worst symptom with my hashimotos underactive thyroid. Ive practically been migraine free since i was diagnosed and started medicating.
I had one really bad relapse with migraines and it happened when my t4/t3 levels flatlined which happened as a result of me stopping my t4 dose (100mcg) and replacing with t3 and NDT but it obviously wasn't enough. Went back on t4 and not had any migraines since.
Hi, just a short note. My breathing became desperately worrying shortly after RAI, struggled to walk even a couple of hundred yards. I’m only on levo at the moment but after insisting on an increase in dosage to 125mg I’m much better, can actually walk and talk! I’m still being monitored by the endo as he feels that’s too high, we’re now discussing adding T3, in the meantime I’m have a whole range of blood tests, far more than the standard NHS thyroid panel. The information I’ve gleaned from TUK has been a godsend.
I was diagnosed with Pernicious Anemia in 2019 and breathlessness or air hunger was one of my major symptoms. I didn't read all of the replies so apologies if this was already covered, but for me it was more like I just couldn't get enough oxygen no matter how deep my breath more than it was something that happened during exercise, like trying to catch my breath.
It has already been covered, but air hunger was one of my first signs of Pernicious Anemia/b12 deficiency. And especially when I knew my aerobic capabilities. Therefore it was very easy to spot and know something was not right. B12 also causes a lot of sighing, which I never heard myself doing. A loved one used to say in a frustrated manner, "Why do you sigh all the time?" Well imagine my shock when I found out it is a b12 symptom, one is searching for air by regularly sighing
Also, larger thyroid nodules can affect the airways.
For me, my larger nodules only affect my airways in certain positions.
All the best to you. I hope you get to the bottom of it soon.
It is worth another check Murphysmum. My mother had to have a valve replacement, and she had a distinct change with breathlessness with everyday movements.
And do note her GP said, "Tell your daughter there is nothing wrong with your heart" when there most definitely was something wrong, that needed immediate attention.
Just think of it as crossing a list off, to come to a helpful conclusion for better circumstances.
And you wouldn't believe all the advances they have with heart valve replacement, which you probably don't need but of course best to recheck, it is truly amazing.
It was a really hot day, kept drinking water. The next day felt unwell. Breathing was a struggle. Had a blood test, which showed my saline levels were dangerously low. Apparently, I drunk so much water, it flushed saline from my system. Had to go into hospital for a saline infusion.I think we are all so vulnerable and need to take care of each other.
It’s so good to share our thoughts and concerns. Best of luck. Take care.
In my experience I was feeling like that too, like I could not fill my lungs all the way, almost all the time, I was diagnosed with Hashimotos at the beginning of the year and had been on 30 mg of np thyroid, first 4 months felt great, but not so much after, they tried raising my dose 15mg more and that made me feel worse, anxiety, breathless, after going to the Er because I was dizzy, numb hands (nerve compression on my back) and extreme anxiety I decided to lower my dose, Asked my dr and she okay it and sent me to an endocrinologist, I weaned myself from the meds and the endocrinologist told me to not take anything for 6 weeks until we run tests again, I no longer feel out of breath or hypothyroid, this has been me, no sure what is going to happen, Endo said probably will be prescribing levo. Oh and I fainted 4 days at the dr office when they were taking my blood for tests.
Hi there. I've had an underactive thyroid for some time now about. Over the last few years I've felt breathlessness, not intense, but enough to worry about. I removed Gluten from diet which helped massively, I also recently started on a course of berberine (only took for 2 months as not recommended for long term use) as my Cortisol was high which had built up over time. I no longer get breathlessness, only when go in a long walk, which is normal. Hope this helps and you find out what the cause is, and get btr soon.
I get this too but only when walking. I go to exercise classes three times a week and can do them with no problem it’s only during walking especially up or downhill. I also have a new fitness band that tells me I have at least one episode of difficult breathing while I’m asleep. I am also having tests atm for peripheral neuropathy which I was diagnosed with at the same time as I was diagnosed with hypothyroidism in 2008. It’s actually taken all of this time for a doctor to refer me to a neurologist who wants an MRI of my neck and head. Hypothyroidism can cause this but so can other things like vitamin B12 deficiency, chemotherapy, diabetes or a tumour. I have never seen an endocrinologist doctors did the usual and gave me 100mg thyoroxine said I’d be fine. Does anyone else get the neuropathy?
It's a very uncomfortable feeling. I would normally suggest that you may need an increase and someone pointed me to this website: thyroidpatients.ca/resource... I haven't looked at all of the links but it is shows the completely different effects when taking T3 only. They claims many people may need 90 mcgs of T3 to bring Hypo into remission. However I think 60 mcgs may be enough if you don't have symptoms. I have known that there is a heart evaluation you should check and that is a lag in the R wave on an ecg. Your doctor could look for that if you have ever used a monitor. Are there any heart blips you feel at night during sleep? A very slow thump might also mean low levels.
No, not at the moment. I have had the large slow bumps but it’s more little palpitations now and sudden hard thumps.I’ve also had a couple of days where I’ve felt “over” so things are adding up now
I see you were hyperthyroid at first diagnosis? Lots of people here were on block and replace which I never understood. Having been hyper, do you recognize this symptom as similar? Are you still producing any hormone of your own. What state is your own gland in? Could you be shedding? Do any of your previous tests show any T4 being produced?
From that website I post to you, there is a lot about reverse T3 and those of us who can't tolerate any T4 seem to make loads of reverse T3. There are many research trials. I'm still looking myself.
I probably need to update my profile a bit.. my hyperthyroidism was never diagnosed, and it’s only really a personal observation. I was officially diagnosed later once I was properly hypo.
I have had issues with RT3 in the past - I’m fax this is exactly why I don’t take any levo now. I have no proof other than my personal experience but even adding in T3, I never felt the benefit until I removed levo. I got symptoms that seem to tie in with being over medicated or the hormone not reaching the places it needed to be. Since dropping levo I’m radically different and hope never to use it again.
My RT3 was only tested a couple of times early on in my journey and it was high then, makes sense as I wasn’t converting.
It’s not the issue now (though I take your point it could be causing symptoms right now) on the whole it’s not a problem.
My thyroid is pretty well done I think, without hormone treatment I make very little of my own but I do wonder from time to time if I’ve had a dump into my system as things will fairly quickly go off kilter with no obvious reason. I’m working on the basis just now that this is down to my stage in life and my cycle.. I’m definitely low in progesterone and that has a major effect on how I feel.
All right, I think your logic sounds right. There is a test on the site about conversion but you need to be taking T4 I think. Really I've seen some very strong remarks made that suggest that T4 can be an antagonist for some people. I have never had good testing but I was intense pain when beginning Synthroid and have had muscle issues ever since even after changing to NDT and then T3. It's not so bad at this point. I'm taking a supplement to stabelize sugar which seems to be a big factor in changing glucose to energy. Also, I have been reading that recurring epstein-barre infection could be causing a problem with the vagus nerve. I think the nerve is involved somehow.
That’s interesting what you say about the muscle problems lingering. This is my last remaining issue really and I didn’t have at the start of my issues.It only came with a big increase in levo to see if we could improve my symptoms, and never really went away.
What glucose supplement do you take? I’m intrigued as I do suffer from a bit of low sugar feelings sometimes - a bit shaky etc, especially when I’m trying to cut back a bit. Snd by cut back I don’t mean diet or calorie restrict at all, I mean eat more healthily but then my body really cries out for sugar and the craving become ridiculous. I don’t eat much sugar at all so it’s not like a kind of detox thing… just a need for more energy.
I’m clear for diabetes etc so it’s not that.
My muscle issues have been much better recently on the higher dose and I’ve had periods since starting T3 when it’s gone, but it creeps back and I can’t link it to anything
Muscle weakness for me. Especially shoulders but at bad times hips too. Even folding laundry is a marathon effort, on good days it’s just a general muscle tiredness feeling.
I have literally just said this to my husband! I have to ask him to move heavy stuff for me now and it annoys me SO much! I used to be so strong and now I'm so weak 🙄.
Do you have and kind of cysts or lipomas around nerves? Another curious thing, lots of trigger points under shoulder blades. Fascia can relay pain also. Physical therapists don't seem to know a whole lot about these issues and possibly because it's more of a metabolic problem than a structural issue.
I've been taking this Jarrow product. It contains many of the recommended supplement but what caught my eye was the bitter melon. There was a discussion about that on one of the summits and I had taken notes. Blood sugar roller coaster causes conversion problem. It won't show up on your blood until later stages. Proteins digest similar to sugar. Adrenal fatigue will lower sugar. iherb.com/pr/jarrow-formula...
I have no idea tbh! I’m fairly confident my cortisol is ok though. I did suffer from all things cortisol related at the start of me having issues, but when tested it was only slightly low and seemed to correct itself over the course of a year or so.I have no doubt that’s what affected my progesterone then, but I show no signs of cortisol problems now 😊
But it's difficult to tell from a single blood test. The four point saliva shows the active cortisol. It should begin high in the range and continue dipping until the last point. By bedtime it should be very low. If it's higher than it should be it often means your adrenals have been struggling to catch up. Ray Peat raypeat.com/articles/aging/...
I did both a blood test and saliva, several months apart. Neither was of concern really but the second was better than the first, so by then the changes in treatment had helped improve it
I agree progesterone may be a part of this as the adrenals will steal progesterone in order to make cortisol.This is the test I was talking about. Actually on NO T4. thyroidpatients.ca/2019/06/...
What a tremendous amount of replies to your very interesting question. I too suffer from breathlessness, but I HAD GRAVES. Breathless symptoms were worse after eating, like wearing an iron corset that was tightening on the ribcage cage area. Had this for 5 years during the NEVER ENDING tests before my numbers finally skyrocketed into GRAVES and they determined i was not crazy after all ( imagine that?). I went in to Graves remission after 2 years of very hard work.
BUT... I take the time to comment here because the breathlessness improved after 7 years of diet changes, dealing with yeast, and diagnosing low stomach acid. Vast improvement : YaY! Back to "normal"... and then went for an emergency Covid test when I went from walking 5 miles a day to not being able to walk to end of my driveway.
In the emergency Department I was told NO COVID .... but..... HEART attack.... totally 100% blocked LAD (the "Widowmaker") and emergency stent installed. Out and back to almost normal self in 2 days. All my favorite doctors had overlooked my heart problems, but the doctor I hated was the one who insisted I go to the Emergency Dept. to get checked out. She probably saved my life... go figure!
So I just comment to say that yes, many of us struggle with this issue for decades (hyper and hypo) BUT you always have to make sure that it is not a bigger issue. That's hard because a lot of us have lived through decades of being ignored. But please MurphysMum, be cautious when searching for your own answers!
The big reason I INSISTED on going to Emergency was I had radiating pain down my arms as well. And remember, Women's heart issues can have very different symptoms than Men's.
Good luck and thanks for the question. It's good to know I am not alone with this thyroid breathlessness and I'm going to look into many of the discussion points brought up here.
Wow, thank you for your response. I guess this is actually one of my “problems” - I’m always worried it’s something more serious when normally it’s turns out to be something simple. But point taken absolutely, and if a lowering of dose doesn’t stop it, I will have it investigated.
The first part of your answer interests me, especially as only last night after eating a meal out, I found myself even more breathless walking home. Not very far, not very fast but I was seriously out of puff. Ridiculous and not normal. Prior to that for the last few weeks I’ve been thinking gee, I must get fitter again, but last night was different.
I’ve dropped my dose already tonight so if things don’t improve a bit in the next week or so I’ll have it looked into. I did have a heart scan about two years ago which was totally clear, so I’m hoping things can’t change that quickly.
Glad you’re sorted now though, bet that gives you a different outlook 😉
Yes, it totally does give you a different outlook! Every day is a blessing and the small stuff rolls off my back now. I never thought I would have a heart attack... just was not on the radar at all. Hence why I just wanted to reach out to you. I think the hardest thing is knowing when to stand your ground and not give up.
But I did learn a VERY valuable lesson: Thyroid is complicated and no doctors want to deal with us! Hearts have the money and research.... so when you have a heart issue and THOSE TEST NUMBERS SHOW IT, then all of a sudden you are the STAR of the Emergency Dept. and everyone is paying attention all of a sudden! It was MEDICAL WHIPLASH! ha!
I went from being the crazy thyroid lady to the lady who had 4 doctors, nurses, techs, etc etc etc all wanting a piece of me! Amazing! I only wish thyroid issues could be more the "star" sometimes and maybe we might get the REAL answers are all are seeking!
But I love it here, always my go to place to read cutting edge discussions. If only we could turn this into the new research, testing, and diagnosis programs that we all need to live our full lives.
R.
Had this, it was too much of either t4 or t3 (I mix NDT with t4) for me. Breathless walking talking, I can't have any of these top of range. I would definitely recommend a blood test, even the home one with finger prick, it will put your mind at ease, I always keep one handy at home.
Yeah most GPs are bad like this, sometimes they test mine as my tsh is 0, so they feel like they need test it in case ft3 sky-high lol. it's good we have access to these kits.
I had breathlessness, when my adrenals were exhausted, after years of living with untreated hypothyroidism, and my B12 was also very low. I supplemented B12, and I used Paul Robinson's CT3 method to improve my adrenal function (it took about 2-3 months of early morning dosing with T3 before I could drop the early dose and just take T3 normally). I think the breathlessness was mainly due to the adrenal fatigue, but the low B12 can't have helped.
My heart has been checked thanks, and it seems this is fairly common with thyroid issues. It’s seems likely too that i am a bit over medicated just now so that is more than likely the problem - going on all the above replies.
I had the same issues. Discovered I was anaemic with very low ferritin/iron stores. I had an iron infusion and felt like a million dollars within a couple of days. I now take a regular iron supplement with no breathing issues whatsoever.
I struggle to maintain it as I don’t absorb iron very well via food. But I do know when it’s getting low as I struggle to breathe and take a deep breath, I now eat a lot of liver pâté! Thankfully I like it.
Yeah, I struggled improving mine with supplements too. Well, improving it full stop really! Everything else you could see increasing quite well but my iron panel is very slow to pick up.
I was eating white a lot of pate for ages too but tbh I’m not sure it helps the weight side of things so I’m not eating it so regularly now
I too suffer from a similar level of breathlessness with my hashimotos. I have been taking Levothyroxine for a couple of years and about a year ago my breathlessness became a real concern. 3 months ago I converted to a gluten free diet and also made sure I was taking all the right vitamins and minerals. A month later my breathing became a bit easier - still not right but not quite so bad. I am having hospital tests currently to see if they can find out what is causing it, but I am not optimistic. I am convinced this is just another one of the many symptoms one can have when suffering from a thyroid disease.
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Breathlessness
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