Thankyou! I think i may be getting somewhere!

Just a little post on here to thank everyone who replied to my 2 previous posts with information and advice i have taken it all on board and have since went back to my gp and demanded further tests which are now booked in, i think she may have been a little shocked when i took a stand and told her exactly what i wanted to happen and what i expected from her...ridicule not being high on my list! I will update everyone when i recieve me new result and hopefully i will have a clearer picture of what is going on with my body,

I do greatly appreciate everyone taking the time to help me out on here i can't thank y'all enough! If only the gps were are helpful!

Still haven't had any info or concern from gp about the debilitating breathlessness even though i feel it is getting worse (odd breathlessness not quite sure how to describe it, almost like you can't take a full breath and need to yawn to relieve it 🤔 or like your lungs are already full of air and you can't take more in) anyway she is unconcerned and played this symptom down even though it is one of the worst feelings so i am hoping this will to get a bit better when these tests come back and i know what my next steps should be....thanks again everyone, i woulf have been lost without you X

32 Replies

  • Hi Gensone 88 I just wanted to say I to have the same breathlessness but since they increased my levothyroxine and I now take folic acid and iron tablets it has helped. I hope all goes well for you x

  • Thankyou Tiger_lily, hopefully i get some answers now, feeling alot more capable of fighting my corner with the advice i have had here, can't thank everyone enough..i was at my lowest point before signing onto here at daft o clock in the morning ha! Best decision i have made X

  • This is a link about breathlessness:

  • Thank you x

  • Hi Gemstone88 I'm not as knowledgeable as all the kind people are on this sight. I have written my first post today but have been reading everyone's post for a while now. This is a friendly site with good info. Hope you have good results from ur doctor I know it's a struggle. Take care from Helen x

  • odd breathlessness not quite sure how to describe it, almost like you can't take a full breath and need to yawn to relieve it 🤔 or like your lungs are already full of air and you can't take more in

    I have this problem sometimes. It used to be a lot worse when I was short of iron.

    In my own case I was so short of iron, and had untreated hypothyroidism, and I was getting more and more breathless. In the end I was hyperventilating and only breathing out of the top of my lungs. So yes, my lungs really were already full of air and I was only using a small portion of my lungs to breathe with, which made my breathlessness much worse than it needed to be.

    I was lucky. For a change my doctor actually did something useful and referred me to a respiratory nurse who taught me breathing exercises. (I didn't realise at the beginning that it was going to help so I was extremely ungrateful at the time.) The breathing exercises I was taught were awful to begin with. I felt like I was being suffocated. I had to learn to breathe using my diaphragm rather than my shoulders, and I had to slow my breathing down a little bit at a time. (I had been taking a breath about every 2 seconds!)

    I still use the breathing exercises when I start struggling. And if I ever feel that my lungs are already full when I need to breathe this is probably because they are. I've found that deliberately breathing out as much as possible before starting to breathe in from my diaphragm upwards helps a lot.

    I'm sure the problem is triggered by anaemia and/or hypothyroidism problems. But once the problem starts it can rapidly become chronic.

    Do searches for :

    breathing pattern disorders

    belly breathing

    Buteyko breathing

    breathing exercises for runners (or anxiety or panic or sleep or copd or singing or stress)

    chronic hyperventilation

    breathing retraining

  • Thankyou humanbean i will give this a look aswell, i have been aneamic for a long time and am 99% sure i have a hypothyroid problems amongst other my t4 is continually falling but my tsh is always between 1.3 & 2.8...also vit d deficient and b12 with celiacs, have tried everything to pick the levels up but i was fighting against my gp previously instead of working with her..i am hoping this will now change, it is a horrid feeling so hopful this will ease if i can get some answers with these tests X

  • What you describe (feeling like you can't get a full breath, yawning etc) is called air hunger and it is a hypo symptom.

  • Thanks puncturedbicycle i have tried to explain this to my gp previously but she is reluctant to aknowledge it as my oxygen stats are always normal when she checks...i won't let it go though it is a horrible feeling

  • Breathlessness can be a symptom of hypothyroidism. As GPs don't appear to be taught as students any symptoms they are unaware.

    You may need some T3 added to your T4 but you may be able to convert sufficient T3 from T4 (levothyroxine). Levothyroxine is inactive and T4. It should convert to sufficient T3 but you need an optimum dose of levo.

  • Thanks shaws i currently am not prescribed anything for my thyroid which i am hoping to change after demanding these tests, my t4 has fell at every test since 2014 and is now sitting under the lab range...had previously refused to test t3 or antibodies etc which i have now thankfully managed to get my gp to do, she actually told me i hadn't gained weight and my pulse was always fast so i could under no circumstances have thyroid problems, it is very frustrating but the advice shared on here has helped me tremendously X

  • I never gained weight and I was certainly hypo so I cannot deduce how on earth that if no weight gain means not hypo. My TSH was 100 when diagnosed.

  • Everything seems to be such a massive battle with them all the time, no person in their right mind wants to feel ill, sometimes its like they want you to believe it's all a fabrication...even when it is there in black & white, very frustrating x

  • What was a bigger shock to me than when, finally, diagnosed with a TSH of 100, that I got more and worse symptoms on levothyroxine. It took quite a few months and the help of and there was no forum then, so it was a slow and steady progress but we cannot do it alone. We can finally get there despite the guidelines.

  • shaws that sounds terrible i hope you are well now and things are stable for you, i have been unwell now for 6 years and feel worse eveey passing month i am convinced this all kicked of after 2 unsuccessful pregnancies before finally carrying my daughter, it is very frustrating getting anyone to listen, and feeling alone while dealing with some of these symptoms is very hard but this forum and the people on it have gave me that push that i most definitely needed i was getting to the point where i couldn't face another fight with a gp or being laughed out of another appointment...i can't thank enough for that X

  • I am healthy and well now, thankfully.

    We have to read and learn and what suits one person doesn't suit another, so it is trial and error individually as hypothyroid patients.

    You are correct, pregnancies can somehow start off hypothyroidism. Also miscarriages can be due to hypo as well. They don't appear to have any sympathy for the suffering patient but will willingly prescribe other meds for the symptoms, be it anti-d's, sleeping tablets etc etc.

    Doctors nowadays have lost the skill of knowing and diagnsosing on clinical symptoms alone. It is all down to a machine diagnosing us, i.e. blood tests and not listening to the patient.

    We can get well by our own methods and help from members. Many members now source their own hormones. Also, if you can afford it you can get a proper blood test and Medichecks have a special offer at present.

    p.s. I've been well for a number of years now.

    This is a link by Dr Lowe who was an Adviser to TUK and he had resigned his licence in USA so he could treat patients without interference from the authorities. It seems to be the same worldwide now. You just need to read the first page.

  • Thank you @shaws i will look through these links and take as much on board as i can, that is great to here hopefully i will find myself in a similar position soon and feeling well x

  • Sorry to Hijack , I am glad I have read this comment Shaws as I was only diagnosed by accident 6 weeks ago with a TSH of 118 I started on Levo and I have felt worse - loosing hair, very dry skin, gained 8 pounds in 6 weeks , tired , breathlessness and cannot sleep at night, most of these are worse 2 fold some I did not have before Levo, I want to stop taking it. When you did get on the right dose did a lot of symptoms disappear ??

  • What dose of levo are you taking at present?

  • I have been upped to 75mgs on Tuesday. I was on 50 for the first 4 weeks, had blood pulled on Monday I was called by reception and told my results have improved a little and doc wanted to get me upped asap rather than wait till this Monday when I have my appointment with her.

  • That's good your doctor increased your dose as some wait six weeks. She sounds good and hopefully as your dose increases you will feek much better.

    It is a big learning curve but the aim is to feel well agan and many do fine on levothyroxine once on an optimum dose, so hope it works for you too. If not, there are alternatives which your doctor probably wont prescribe but you can source your own, thankfully.

  • Thank you, I think I have a good doc as she was the one that suggested going to this level ..but did you feel better once at optimum dose and did the symptoms cease ? All I read is negative as I guess you wouldn't post here necessarily if you were well and happy. I guess I just want to know that people will feel worse before they feel better, because I feel worse than 6 weeks ago ( when I was not on Levo)

    Thank you for your time, I appreciate the time everyone takes to answer us Newbies when you are going this yourselves, love and hope to Shaws and everyone on this path xxx

  • You are very correct - there are millions who do fine on levothyroxine (or don't have internet access and are given other medications for their symptoms instead of the necessary hormones) and wouldn't feel the necessity to join a forum.

    So those people have no need to search the internet to find the cause for feeling no improvements.

    When first diagnosed and given levothyroxine you hope against hope that what is prescribed will remedy everything. You just cannot understand how something is prescribed and you feel so very much more unwell. You ask GP - no knowledge. I expected more from them, i.e. to answer why I felt so bad, why was my heart playing up that I was forever in and out of A&E. Couldn't walk or step onto a pavement, comb hair etc.

    It was who helped me and as soon as I learned there was another hormone as GP said there was nothing else at all. The Endocrinologist I saw was good and she allowed me to have some T3 added to a reduced T4. It was a relief and I felt much better but on my next blood test I was phoned and told to stop T3 immediately as my bloods were 'out'. I refused so told me to reduce levo which I did (and felt even a bit more improvement) I then knew I had to go to someone who'd give me advice opposite to the NHS.

    Here I am today and am thankful and I don't understand why the British Thyroid Association has now stopped T3 and have caused patients who need it desperate beings. I feel in my bones it was because more were requesting it and because the cost went from about £30 p.m. to £300+ they could have selected another T3 of which there are a few. They had their excuses but they don't tell the truth.

    You can get better but we have to do it ourselves and it is sometimes a bit of a long road but you can get there in the end.

  • Hi Gemstone, just wanted to add that B12 deficiency can also cause breathlessness. I used to sigh all the time, to other people's irritation. I have hypo as well, so that didn't help.

  • Thanks Hillwoman i have had my b12 checked twice previously it was 430 the first time and had dropped to in the 200s at my most recent so i know that this is also an issue, it is just getting the gp to listen, hopefully after i get my current results i can put them infront of her chronologically and make her see X

  • The serum B12 test is notoriously inaccurate, unfortunately, and the bottom of the range in the UK is much lower than in many other developed countries. In reality, you may start to develop neurological abnormalities if your serum level is below 450-500.

    If the GP doesn't prescribe supplements, I would urge you to buy some. Sublingual types seem to work best. If they don't get your levels up, then you may have a form of malabsorption, in which case head over to the HU Pernicious Anaemia Society forum for further advice.

  • The breathing symptoms could be Coxsackie virus Bornholm (Devil's Grip). Nasty virus that needs to take a running jump. Well done for standing your ground. My best wishes to you.

  • I think that the great thing on this forum is we can put in our experiences and throw more ideas into the mix. This gave me more confidence knowing I should be better treated to go and do something about it! That first step is always the most difficult we know but often the more rewarding!

  • How about B12 and magnesium - have you been tested for these? You might be deficient......

  • Hi Rosymoggs my last b12 test was very low but they were reluctant still to do anything about it, i have not had my magnesium level tested but am in this week for a number of tests after kicking up a huge stink so i am hoping they will take things seriously when these results are back, i have a number of horrificly debilitating symptoms and my blood results are always off but my gp is convinced it can't be hypothyroid as my pulse is normally elevated and i can't keep weight on, these are the only 'odd' hypo symptoms every other thing i would say from researching and speaking to other people suffering and also my test results previously all point to thyroid issues, i know i am always anaemic...i always have low potassium...low b12....vit d etc but getting them to listen is extremely difficult at the best of times! It took me 6 years to finally get my gp to run these tests more thoroughly...that is 6 years of my life i will never get back, spent being and feeling horrificly ill, it really is beyond a joke when you think about it X

  • My B12, magnesium, iron and vitamin D were all depleted and I lost a lot of weight thru feeling really ill physically and mentally. The doctor finally told me I could take supplements. I got them over the counter - except for the iron. The best B12 are the sub lingual methylcobalmine ones which I've been taking for 2 months now. I've got pernicious anaemia as well due to stomach anti bodies which interfere with the absorption of the B12 so I'll always have to take a supplement. But some doctors are very slow on the uptake and some just don't seem to be bothered about low B12 levels that can however lead to some serious health problems if left untreated. Hope this has been of some help!

  • That sounds alot like myself Rosymoggs i have celiacs also so have gathered that will be a reason why my absorption is so poor, i have previously been on iron tablets and folic etc from the docter after moaning endlessly but the took them off me after 11 days with out retesting, it is a nightmare to get results when some just will not listen, i will look into this further though, thank you X

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