Air hunger now a serious problem now on oxygen!!

[Caprice123]

For the past year I've been getting more and more breathless. I ended up in hospital with suspected heart failure, but the cardiologist said my heart wasn't too bad for my age of 74 years. Waiting for pulmonary tests and to see a neurologist. I am on 20mcu T3 and 125mcu T4 . Same dose for over 10 years. My blood tests are normal, in fact my TSH is suppressed because I take T3, so no increase in medication. I have today told my doctor I shall not take the T3 for a week and take an extra 50mcu T4 instead, then have a blood test and see what my TSH is. I have night oxygen as I kept waking up, sometimes, with adrenalin rushes other times with a strange feeling as if I was going to pass out. I am so breathless I can't speak on the phone. My doctor has now prescribed mobile oxygen. I am getting desperate as the air hunger is at a serious level. I was diagnosed with mild sleep apnea and use a CPAP machine at night with the oxygen. I seemed to have got more breathless since using the CPAP machine. Rang the hospital and they said machine should not make me breathless. I wondered if the carbon dioxide was building up in my blood from the CPAP machine? I have muscle weakness in my shoulders in that I can no longer raise my arms above my head in fact I can barely move them. Please, please can anyone tell me if they have had a similar problem or could it be my thyroid? Thank you so much.

[bluebug]

I don't want to scare you so I think you should wait until you have had the pulmonary tests. Air hunger is often a symptom of other lung diseases that aren't cancerous. Unfortunately it doesn't matter if you were/are a smoker or not due to the levels of air pollution in lots of places.

I hope you don't have to wait long until you have the pulmonary tests but if it gets worse then you may have to go in as an emergency patient.

I should add I know and known 3 people who have CPAP machines for sleep apnoea and 2 of them had no significant decrease in lung function. The one who had issues was a smoker who also had asthma.

[Caprice123 in reply to bluebug]

Thank you, bluebug, for your response. I'm so confused. If only the hospital would send me an appointment for pulmonary testing, then I could start to find out the cause of my breathlessness. In the meantime, my GPs have been wonderful with their help to make life more comfortable for me. After a referral by a cardiologist in February 2016 and two letters from my GPs I've still not heard about a test appointment, though another GP is going to write to a Pulmonary Consultant. I've chased up the hospital by phone but, some days, I'm so breathless I can't speak on the phone. I like the CPAP machine because it makes me feel I can breathe, though my doctor says that could be psychological. I disagree, as the machine breathes air into my lungs. I'll keep the site posted of any news. Thanks.xx

[Clutter]

Caprice123,

I wouldn't make any changes until after your pulmonary tests and neurology investigation. T3 is sometimes prescribed by cardiologists to help the heart. If you increase Levothyroxine to by 50mcg you need to wait six weeks for it to be absorbed and metabolise before you have a thyroid test.

If you can post your most recent thyroid results and ranges (figures in brackets after results) members can advise whether you are optimally medicated.

[Caprice123 in reply to Clutter]

Hi Clutter. Thank you so much for your advice. I've just posted on the HU thyroid site that I've stopped my T3 and replaced it with 50 mcu of Thyroxin in an attempt to see what my true TSH reading is. The problem is that I thought a week woukd be sufficient to see the actual readings in a blood test. Obviously not. I shall take your advice. I will go back to my normal t3/t4 medication, cancel my blood test appointment and await my neurology appointment, which is next week. The pulmonary test is still creating me frustration, as despite a cardiologist referral, two letters from my doctor and several chase up telephone calls from me. I've heard nothing. My doctor visited me recently and he said he would send a letter to the pulmonary consultant. I am now on ambulatory oxygen as well as night oxygen. I will have to go to the surgery to get my last results, which were some time ago. So I will post them ASAP. I don't often leave the house, as I get too breathless. I picked up from this site that I might be B12 insufficient. I do suffer from gall bladder trouble and resulting indigestion, which could stop B12 from being absorbed. Maybe I should start taking some sublingual B12? I also get lots of pins and needles, especially in my legs when sitting down. I put this down to lower back trouble. Also my hands and lower arms, but thought that might be damage to my elbow nerves. Sorry for the long post, but you seem to be very well informed on these thyroid matters, which I appreciate so much. Thank you, Clutter.xx

[Clutter in reply to Caprice123]

Caprice123,

Ring the GP receptionist and ask whether thyroid results and ranges can be given to you over the telephone. It may be worth holding on until you have another blood test and asking for B12 and folate to be tested before you supplement B12. B12 deficiency can cause numbness and pins and needles in arms and legs and you will need B12 injections if you are deficient.

I hope your cardiology appointment comes through soon.

[jacrjacr]

thryoid, b12 and low iron cause that also

[hunny59]

Caprice123 - Just a thought - the simple things rarely seem to be looked at by doctors nowadays.

Have you had any testing for B12/iron/folate or any other vitamins and minerals? Air hunger is a classic symptom of B12 deficiency and vitamin/mineral deficiencies often go hand in hand with thyroid problems. As we age, our stomach acid also decreases which can exacerbate any difficulties with absorption of vitamins/minerals from our food.

Muscle weakness and tremors can also be attributed to various vitamin/mineral deficiencies, including B12, magnesium and iron.

[Caprice123 in reply to hunny59]

Hi bunny59. My iron levels were slightly down at the last blood test but the doctor told me there was no need for concern. I had a B12 test a couple of years ago and it was normal. Since then, I have developed gall bladder trouble, though no gallstones were found on the Utrascan. This in turn gives me chronic indigestion for which I take omeprazole every day. So I might have food deficiencies, I shall start taking B12 sublingually. I'm not sure if you can take iron sublingually. I'll have to find out. Thanks so much for your response.xx

[hunny59 in reply to Caprice123]

Caprice - please be careful. Omeprazole is a proton pump inhibitor, which is designed to suppress your stomach acid (in case you didn't already know) which in turn can lead to more deficiencies. The fact that I was on them for 20+ years I believe is the root cause of the problems I'm having now. Symptoms of low stomach acid are ridiculously similar to the symptoms of indigestion. Fortunately, it's easy to test:

scdlifestyle.com/2012/03/3-...

Many of us on here have learned to be sceptical when our doctors say that results are "normal" and request printouts of our test results (to which we are entitled). A B12 result less than 500, despite being in range as far as the doctors are concerned, can lead to neurological symptom such as pins and needles amongst many other things and most doctors seem to be blissfully unaware of this. Optimal values are 1000+

[MariLiz]

I had really bad air hunger when my B12 was very low. Ask for it to be checked. If we have a thyroid problem we need our levels to be near 1000. Mine was 176.

[Caprice123 in reply to MariLiz]

Thank you MariLiz. If the neurologist can find no problem and if my pulmonary tests don't show anything up, then I will have to go back to my doctor and ask for a B12 test. I'm so confused that I don't know what to think anymore. I'm nearly giving up. I'll just have to accept my discomfort.. At least I have my oxygen which helps to make my life a lot more comfortable. For that I thank my lovely GPs. I'll have to go back on t3 tomorrow. My depression has returned. I'll keep the site posted of any news I have.xx

[MariLiz in reply to Caprice123]

Hi Caprice, I really hope they can find out what is causing your breathlessness. I found it very frightening when mine was bad, it stopped me from doing very much, and all I wanted to do was sleep. Understandable I suppose, my body was shutting down to conserve what oxygen I was getting. I also got very depressed. Do let us know how you get on with all your tests. Very best wishes MariLiz x

[Joyia]

Caprice I am sorry to hear you are suffering so much. I was not in the health position you are (am 75 years of age) but have had shortness of breath symptoms for quite a long time. I am extremely reluctant to take medication unless I really have to and put off going to the Doctors for a long time. I do suffer from allergies as well. I then found my coughing was getting worse and had to go to the Doctors, in turn I was sent to the Asthma Nurse who prescribed inhalers. What I am getting at is I have to admit the inhalers have completely stopped my coughing and my breathing and energy has improved, in fact I cannot believe the difference it has made. I have probably had Asthma for a long time but didn't have a diagnosis because I kept avoiding it, even though I am aware the inhalers have steroids in them I have to say I feel a lot better than I did. Perhaps this is something you could consider in your quest for answers.

[Caprice123 in reply to Joyia]

Hi Joyia. Firstly, I'm so happy for you that you have found an answer to your ill health. Well done. When the paramedics arrived Christmas Eve to take me to hospital, they put me on an inhaler with asthma medication which you inhaled. It didn't help me at all. So the paramedics said I wasn't suffering from asthma. About two years ago the doctor tested me for asthma because I had a stubborn cough which made me wheeze, but it turned out to be GERD, which is acid reflux disease. So, I don't think it is asthma, but I'm not a doctor so I'm not sure. The breathlessness does deplete me of energy, though with my mobile oxygen I can now at least wash and dress myself, well with my husbands help. Some days, I've just lain in bed or sat in a chair, so the mobile oxygen has been a Godsend. I'm trying to not give up. Like you, I'll be 75 in a few weeks. To be honest, I didn't think I would make my 75th birthday, but now I've the oxygen I feel a bit more confident. Thank you so much for your response.xx

[Joyia in reply to Caprice123]

Caprice life is obviously not easy for you but I am glad you are finding oxygen therapy helpful, getting to the root cause of any health condition is not an easy or quick task, especially as we age. On saying that I hope you are eating a really healthy diet i.e. fresh foods, nothing processed and making your own dishes, organic as much as you can afford; trying to avoid negative people and situations as much as possible too; communing with nature and looking into the practice of Mindfulness, distracting hobbies, all this helps our immune systems. Even when we have unsolved health issues we can still do much to avoid going downhill further for as long as we possibly can. I know how difficult it can be when you feel breathless and probably think some of the above suggestions are impossible but I hope you find something however small to lighten your day and give you energy to carry on. Taking one day at a time and trying to make that work as well as you can is much wiser than worrying about the future or the past. I wish you well and hope you find something here to inspire you.

Kind regards.

Joyia