Loss of a Breath Dismissed again...

[Sisson]

Hi My name is Chris and am a newbie to this community, I am 65 and have Rheumatoid Arthritis and Underlying Lupus. For over a year I have had shortness of breath after walking up the stairs and keep missing a breath about every 15-30 mins, it wakes me up at night and have a tightness of the chest and a deep pain there which seems to be a lung problem, but don't know what. Have had CT Scan X Ray's, Blowing Test, etc., and nothing shows to make any diagnoses! Saw a specialist privately, still no diagnoses. Does anyone else having this breathing problem and missing a breath every so often? Can't sleep on my back or side much as it hurts!! Any comments regarding the above would be appreciated.

[shaws Administrator]

Welcome to our forum,

Have you been diagnosed as being hypothyroid?

[Sisson in reply to shaws]

No, am going to see a Respiratory Consultant on Monday so perhaps he could help me!!

[shaws Administrator in reply to Sisson]

Please ask him if he'd do a Full Thyroid Function test as you have read that breathlessness can also be caused by a low thyroid hormones. As Galathea says it could also be Asthma.

He'd have to do TSH, T3, T4, Free T3 and Free T4 and antibodies but he may tell you to have these done by your GP. But I hope he does them for you. Particularly T3 and FT3. T3 is the Active thyroid hormone and all of our billions of receptor cells need T3 for our metabolism to function properly.

web.archive.org/web/2010103...

[Sisson in reply to shaws]

Thanks, will see what my GP says.

[galathea]

Might be worth asking for a methacholine challenge test.... You rather sound like you may have asthma. Asthma stops you breathing out properly, breathing in is ok....

X

[Sisson in reply to galathea]

Have been checked for Asthma, but it was clear.

[Hidden]

A comment from left field - if you're sleeping on your stomach (I'm assuming as you said lying on your back/side is painful) then your nose is very close to your mattress and it is possible dust mites are setting off these issues. Is your mattress over a few years old? Just a thought!

[Sisson in reply to Hidden]

The bed is only a year old and it vacuumed once a month, so I doubt it would be that which is causing the loss of a breath, but thanks for the thought.

[Hidden in reply to Sisson]

Was worth a shot! It is an odd problem for sure, don't let any doctors palm you off, they simply haven't found what it is, as yet.

[greygoose]

Have you had your ferritin, vit A and vit B12 tested? Nutritional deficiencies can cause breathlessness. But, I don't know about the pain... I presume your heart has been checked?

[Sisson in reply to greygoose]

Yes, my heart has been checked, I have had nearly all the obvious tests, not had a vit A or B12 test though. Well see what my Rheumatalogist says.

[greygoose in reply to Sisson]

A word of warning : doctors know nothing about nutrition. They do not understand what vitamins and minerals do in the body, nor the importance of them being optimal. They think that vitamins and minerals are irrelevant. They just don't do it in med school! So, be prepared for you rheumatologist to dismiss the suggestion, out-right!

[humanbean]

Are you familiar with reference ranges? If you've had your ferritin (iron stores) tested and were told it was "normal", this may have been a distortion of the truth.

Suppose your ferritin was found to be 15 with a reference range of 15 - 150. Many doctors will tell you that is normal despite the fact your level is right at the bottom of the reference range. You would probably feel better if your ferritin was around 80 - 100. The problem is that you would have to treat yourself because your doctor is convinced that your level is normal.

Low iron is definitely a massive contributor to breathlessness. When I had it I had severe chest pain and I had to crawl upstairs. Fixing my iron levels helped enormously but it took a long time. I have researched since then and have decided my pain was probably due to a build up of lactic acid in my heart caused by too little oxygen in the tissues - but that is just my theory about my circumstances.

But any nutrient being below or above optimal is going to make you feel worse and many could make you feel breathless.

The first step is to get hold of copies of your blood test results from your surgery. You need to make sure the result numbers are included (NOT just the word "normal") and the reference ranges are included.

I wrote a post on this thread yesterday about how to get hold of your blood test results (I'm assuming you live in the UK) :

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

You might investigate low B12

You could also ask on HU Pernicious Anaemia site

fitday.com/fitness-articles...

"Could it be B12?" is good book too

[bluebug]

You need both your ferritin AND haemoglobin test results as a start.

Many NHS labs use a lower haemoglobin range which is under what the World Health Organisation recommends. This means the NHS is happy to leave people mildly iron deficiency anaemic and so when patients complain of breathlessness doctors will say you are making it up as your test results are "normal".

Other nutrients that cause issues with red blood cells so effect breathing are vitamin B12 and folate. You probably haven't been tested for these.

In addition if you have RH and lupus you need your vitamin D levels tested. There are some theories that if you are deficient in vitamin D then it effects your ability to absorb other nutrients.

So get copies of your test results FIRST and post a new thread, then posters will help you with what you can do next. Getting different doctors to do loads of tests without a firm strategy in what to ask for is not a good idea as it is generally easier for you to do the tests at once.

BTW humanbean has given good advice on getting your records. However one common problem patients face is the receptionist being sniffy and saying something like "Why do you want your test results as you are not a doctor?" All you need to simply tell them "It is for my own records and I am legally entitled to obtain copies under the Data Protection Act 1998". Most receptionists then know to back off with someone who knows their legal rights. However if the receptionist refuses to allow you to put in your request - don't argue with them but come back immediately and post a new thread. There are posters on here who have experience in getting their test results from difficult medical reception and admin staff.

[stig5882]

I too had breathing problems ( I call it air hunger). Before I started T3 therapy I felt as though I could not breath deeply enough to fill my lungs and the doctor tried all sorts of tests to no avail. :/ I then started self medicating with T3 and within hours it stopped. Now some may say this was all in my head but I know it is not as when I was on holiday I missed my dose for the last 2 days as I ran out and after the first 24 hours I was again gasping for air and within an hour of my next dose I was fine again. I am not saying you are hypothyroid but if you do get a positive result it may be worth trying some T3.

[Bobbobby in reply to stig5882]

Hi I'm a hypo also and having serious air hunger. The pulmonologist did test and didn't find anything but it's seriously affecting me. What do you mean by self medicating with t3? I recently started tirosint in January after being untreated for a few years but don't feel any better. I couldn't tolerate the other medicine made me every ill. I've got to figure something out because I keep missing work etc.

[stig5882 in reply to Bobbobby]

Tirosint may not be right for you? I have heard many have had side effects due to the binders used in making it. Tirosint (T4) is only a storage hormone and must be converted via your liver into T3 in order to be used by every cell in your body. Sometimes people have trouble converting T4 to T3 and they then need to take T3 directly. Problem being that only an Endocrinologist can diagnose new patients at present so you need to ask your doctor for a referral. Have a look on Thyroid Uk website for more information. thyroiduk.org/ or if you are on facebook they have a facebook page also another helpful facebook page is Recovering with T3 or book by the same name is available on Amazon. amazon.co.uk/dp/0957099347?... I know it seems a lot to take in but honestly the more you can read the easier it gets. I wish you all the best. Loraine x

[helvella Administrator Thyroid UK in reply to stig5882]

stig5882,

Bobbobby is in the USA. Some of what you wrote only applies in the UK.

There are no binders in Tirosint Gel Caps. Just glycerol and water - and gelatine for the capsule.

Bobbobby,

Some people switched to Tirosint from other levothyroxine products require a reduction in dose as it is usually better absorbed. I suggest you start a new post to prevent confusion with the original poster's issues.

[Katelou]

Ask about pneumonia and allergy asthma. You are open to these if you have a weaken immune system, as you may have with your other conditions. Also, ask about Bronchiectasis often missed by medics. Wishing you well.

[Sisson in reply to Katelou]

The doc has booked me in for a Broncoscopy so we will see if that can bring up anything. Thanks Kate..

[Hidden]

I wonder if you may have sleep apnoea? You're seeing the right person to talk about it. I was having some problems but didn't think much about it - when I was tested I was found to be stopping 72 times an hour - I had thought they were going to dismiss me!

[Sisson in reply to Hidden]

Don't think so, it's only every so often my breath goes.

[MariLiz]

Ask for your B12, ferritin, folate and VitD to be tested. Also your thyroid function. I became very breathless when my B12 was low.