breathlessness: Hi all I have Hashimoto's and... - Thyroid UK

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breathlessness

foxyeyes profile image
39 Replies

Hi all I have Hashimoto's and currently take 100mg of levo a day about 6 months ago started getting breathless GP sent me for a lung test that was okay but just recently it has got a lot worse can't walk up stairs or bend down without getting out of breath I get out of breath just sitting down hubby has to come everywhere with me GP has sent me for every sort of test am waiting for CT scan now he is at a loss to know what to do I am wondering if it has anything to do with my medication mentioned it to GP but he said not, have had a lump in throat for about a week now have lost all motivation can't be bothered to do anything any thoughts anyone ?

Thanks in advance

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39 Replies
Lalatoot profile image
Lalatoot

Breathlessness can be a symptom of hypo. Have you blood results and ranges to share so we can comment?

foxyeyes profile image
foxyeyes in reply to Lalatoot

Hi Lalatoot sorry for late reply not had a very good time of it lately I have sent for blood test so will have new test to see what's going on thank you for your reply

shaws profile image
shawsAdministrator

If you've not had a recent blood test maybe ask for one. The following is how you prepare for a blood test:-

1. Make the very earliest appointment.

2. Fasting (you can drink water)

3. Allow a gap of 24 hours between last dose of levo (12 hours if taking T3) and test and take it afterwards.

4. Ask GP to give you a Full Thyroid Function Test. He/she may not as they usually only test TSH and T4.

A full thyroid function test is:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

If GP wont do all of these, you can get a home test kit from one of the recommended labs. Make sure you are well-hydrated.. Take hormones after test.

thyroiduk.org/tuk/testing/p...

thyroiduk.org/tuk/about_the...

mado profile image
mado

I have had the same but not as bad. It’s quite frightening. I have asthma so thought it was related to that. I forgot to fast before my last bloods and my result was 0.49 so I expect I went a bit hypo. I thought it vitamin D and/ or B12, so I took them more regularly. I seem to be ok at the moment, got a bit more energy. I am sorry you are having such a bad time with it. I hope you get it sorted soon. I wish you a happy new year

I had the same symptoms. Goitre was dismissed as “just a goitre, lots of people have them” tho it was scanned. All the breathing, heart, lung tests came back perfect. I had private blood tests done and was borderline low B12 ( GP dismissed this as normal) B12 injections got rid of the breathlessness, tinnitus and numbness in fingertips.

I was then diagnosed with fibromyalgia ( still have goitre that goes up and down, but that’s always dismissed as cause of any symptoms) 3 years on feeling awful I read about B1 deficiency and how lack of enzymes can affect it’s absorption. I know I have a problem with some enzymes so I started on B1 tablets 200 mg a day. Took 3-4 weeks to start having any effect but I almost have my life back. Pain has mostly gone, what I have is very minor. Energy levels have zoomed. I can walk 2 to 3 miles, short rest and I’m on the go again. Had one “bed day” in the last month. Goitre spends more time in its shrunk down pose these days !

Make sure everything else is ruled out—-ECG, bloods, chest X-ray then think about treating yourself if drs want to shrug and ignore it.

I’m not a medic—- just someone who was fed up with drs ignoring me.

foxyeyes profile image
foxyeyes in reply to

Hi 06hollyberry sorry for late reply but have had a bad time had a bad bout of vertigo then fibromaralga flared up then had bad news sister-in-law has got stage 4 lung cancer so not been up to much really am sending for blood test cos everything else is okay but will try B1 I know how drs are been putting up with it for years so will give it a go thanks for replying

shaws profile image
shawsAdministrator in reply to foxyeyes

If you've fibromyalgia, please get a Free T4 and Free T3 blood test. One of Thyroiduk's Advisers and an expert in Fibromyalgia stated that T3 (usually in larger doses) relieved clinical symptoms due to the patient being 'Thyroid Hormone Resistant' i.e. difficulty in sufficient T3 getting into the T3 receptor cells.. (T4 is supposed to convert to T3 but some don't have a high enough dose of T4 or difficulty in converting T4 to T3).

thyroiduk.org.uk/tuk/relate...

thyroiduk.org.uk/tuk/relate...

foxyeyes profile image
foxyeyes in reply to shaws

Hi Shaws thanks for reply I have looked at the links found them very interesting I have sent for a blood test from Blue Horizon will post when I get results

in reply to foxyeyes

Sorry you’ve been poorly and had such bad news about your sister in law. Wishing you well x

jamesal0 profile image
jamesal0

Drop a little Levo out and replace it with NDT. Maybe 25mcg Levo and add 15-30mg . Just fiddle around and find what works for you.

foxyeyes profile image
foxyeyes in reply to jamesal0

Hi jamesa10 thanks for your reply sorry I am late in replying not had a very good time the last week or so am sending for blood test then go from there have tried NDT but felt just as bad on that

Popoff profile image
Popoff

Breathlessness could sometimes be caused by acid issues in the stomach. Not enough acid in stomach had caused me breathlessness which was resolved once i started taking a supplement such as Betaine Hydrochloride with Pepsin. We also know that people with hypothyroidism tend to have issues with stomach acid. Just something worth exploring, if anything to eliminate a possible cause.

foxyeyes profile image
foxyeyes in reply to Popoff

Hi Popoff sorry for late reply have had a bad time the last few days thanks for information I do take enzymes for my stomach sending for blood test so will take it from there

MariLiz profile image
MariLiz

Have they done a recent blood test? You need B12, Ferritin, folate and VitD levels tested.

When my B12 was low I was very breathless, feeling exhausted all the time. It can be found a lot in those of us with thyroid problems.

If any of these are lower than they ought to be, you can have bad symptoms.

foxyeyes profile image
foxyeyes in reply to MariLiz

Hi MariLiz I have B12 injections and take vit d am sending for blood test so will see whats going on

posthinking01 profile image
posthinking01

I have had the same - it is very frightening - this is called air hunger and could be as a result of low magnesium. Better You Magnesium oil would be a good thing to buy - you can get it online - just buy the original oil not any of the other ones - you can also get it at Holland and Barrett (if they stock it that is). I used to have to stop to get my breath and it doesn't happen any more - I was also on too much thyroid hormone which also did not help. Do not put the magnesium oil on at night or if you have had alcohol or have chest issues.

dailymail.co.uk/health/arti...

ncbi.nlm.nih.gov/pubmed/850...

low Vitamin B12 can cause breathlessness and so can being anaemic - so might be an idea to get tested for both conditions by your GP - if you can't get these tests done - then take a good multi vitamin with levels of B vitamins and iron and you might find this will help.

Quote" People with mild or moderate iron-deficiency anemia may not have any signs or symptoms. More severe iron-deficiency anemia may cause fatigue or tiredness, shortness of breath, or chest pain. Hemoglobin is an iron-rich protein that helps red blood cells carry oxygen from the lungs to the rest of the body. If you have anemia, your body does not get enough oxygen-rich blood. This can cause you to feel tired or weak. You may also have shortness of breath, dizziness, headaches, or an irregular heartbeat Unquote

Hope this helps.

A

.

babsi profile image
babsi in reply to posthinking01

You van make your own magnesium oil. It is very easy , and cheap.

LAHs profile image
LAHs in reply to babsi

I'm sure your right, but how? pray tell.

babsi profile image
babsi in reply to LAHs

You need destilled water, and magnesium chloride flakes,

that you get by the kilo on any net site.

Destilled water is better , because the solution will keep longer .

And a spray bottle.

You heat the water ,

put the salt in, and put it in a spray bottle.

300g of Magnesium

1 liter of water

Done.

Just make sure it´s magnesium chloride.

You can buy it from a pharmacy, but I prefer the internet.

1 kg should be around 5 pounds.

And then , with that much salt,

you can also treat yourself to detox foot baths ,

which I found very helpful.

Do it.

You will see.

LAHs profile image
LAHs in reply to babsi

Thanks, I'll give it a try.

Lesleyg13 profile image
Lesleyg13 in reply to LAHs

Instructions here:

wellnessmama.com/5804/magne...

LAHs profile image
LAHs in reply to Lesleyg13

Thanks LesleyG

foxyeyes profile image
foxyeyes in reply to posthinking01

Hi posthinking thanks for your reply sorry I am late with my reply things not been good lately am sending for blood test will look into the magnesium thing though

Sylvia22 profile image
Sylvia22

Hi. are you on any pain killers. They gave my friend Gabapentine for pain and it made her breathless.

Dramlouie profile image
Dramlouie

This is what I have, just gone on here to ask for answers to my breathlessness. I know my ferratin was at 50 last blood test down from 75 but shrugged off as 'fine'! I haven't been taking my B12 or timed release B-100 b vitamins recently as can't afford them. I am not too bad walking but when I have to talk whilst walking or even sitting down its like air hunger, such a horrible feeling. I take two magnesium a day and have no palpitations but I do have screaming tinnitus and tiredness and weakness and just now felt a bit lightheaded so thought I would come on here. I am on NDT 4 grains a day and have Hashimotos although the doctor just says that we all have antibodies and won't test again. Already been through all the doctors at two surgeries. Rather see a naturopath now, they seem to know a lot more than the doctors, and care a lot more!

foxyeyes profile image
foxyeyes in reply to Dramlouie

Hi Dramlouie was thinking about seeing a naturopath myself am sending for blood test see how I get on thanks for your reply

Heloise profile image
Heloise

foxy, your dose is lower than average but the symptoms sound as if you may be overdosed. Do you know what your test results were when you were prescribed T4? This is not professional advice but when doctors are so inadequate they leave you no choice. I would stop taking T4 for a day or two and see if it helps. If so, I would lower my dose.

Is there a chance you are allergic to certain foods? But I think that reaction would subside when you aren't eating that food.

SueHG profile image
SueHG

I was on T4 being hypo and I became breathless over a period of time. Feeling really ill for months I went to private consultants who wouldn't help. I saw Dr Peatfield who suggested that I needed T3. I began and started to feel much better but my BP became very high over a year or so. To cut a long story short it was discovered that when I was so ill the lack of T3 had actually damaged the electrical impulses in my heart so I was rushed in for a pacemaker. Since then I have felt fine ..still on T3 (self medicated bought from Greece. ) There is evidence online that the lack of T3 can damage the heart.,Most docs won't admit this but there is plenty of evidence to support it. I don't take T4 at all because it wouldn't convert to t 3 and that made me toxic. Good luck I hope you find out what's going on but do lots of research yourself, don't just rely on the docs.

kferrer profile image
kferrer in reply to SueHG

Low T3 can damage the heart's electrical system?? Eeek! I have wondered about that because on another patient forum, people who have been undermedicated for a long time really struggle with palpitations when they try to move up. They often then think that trying to increase what is clearly too low a dose is a mistake. Can you post a link to studies?

SueHG profile image
SueHG in reply to kferrer

Sorry if this has alarmed you, I'm not saying that's your problem but it is one to consider and it was for me. There are many links which I don't have at the tip of my fingers, just. ..google breathlessness, heart T3 etc etc Even Dr P couldn't work out my high BP and low heart rate. It was difficult over the phone so there's no critism there of him he was amazing, so sad he's too old to help now, but he did say that everyone gets better in the end with the right meds. T3 doesnt damage the heart but the lack of T3 can do so as the T4 builds up in the body and you become toxic. The pharmacist at the hospital hadn't prescribed T3 for any patients in the ten years she'd worked there, I told her that she should find out more about it, ( she wouldn't have prescribed it for me by the way) In the heart Ward I was in waiting for the pacemaker, every one of the patients had had a thyroid problem going back years, doesn't that tell you something? Good luck and happy googling!

kferrer profile image
kferrer in reply to SueHG

I didn't mean to come off as alarmed, more like concerned. Having said that, if there are any studies bearing this out, they need to be made known. Of course, all this may just be patient/clinical experience. I

t may be the issue hasn't been studied because the question hasn't been asked - because, why ask any questions when you can just throw TSH test/T4 at patients and then blame them when they don't get better, right?

SueHG profile image
SueHG in reply to kferrer

No doctor would admit that it could be the problem but as I said if you do lots of googling you will find out more about it. I saw a dreadful lung private consultant in Manchester who mocked me and said I was lucky it wasn't cancer, his wife was the endo who wouldn't prescribe T3 under any circumstances and suggested I see him. She wouldn't listen to anything I told her but spent the time telling me what I should be doing! What a con ! Raking money in and undermining the confidence of their patients. I am stable and getting on with life able to travel etc non of which I could do before. In the circumstances we are all in with thyroid crisis we have to help ourselves. However I do have to travel to Greece to get my T3.

Does anyone have a reliable online source at present? Please PM me

Thank you.

Pepekins profile image
Pepekins

Lump in throat can be a symptom of H Pylori (most of the population carry this bacteria in their stomach) however it can cause lots of symptoms too.

Gillybean1 profile image
Gillybean1

Hello Foxeyeyes,

Ive had the same sensations too. To rule out 'things' is the most important as everyone else has mentioned, like low Vit D ,Vit 12, Ferritin/iron, H Pyhlori, Low stomach acid, low FT3, follow all the guidelines on thyroid uk re these ranges.

I noticed the 'air hunger' (very frightening) for me, is variable, when stress is raised =higher cortisol= poorer sleep= poorer absorbtion of meds,food = sluggish gut = air hunger and weakness.

We have to be jugglers, it all has to be optimum, its still working progress for me, but i was slightly reassured once all the serious tests had been ruled clear . Medically its annoyingly disregarded and most of us are just left with it to sort ourselves.

Every best wish, G.

humanbean profile image
humanbean

When I get breathless it is an indication that I probably need more iron.

There are various ways that doctors decide that a patient is anaemic, based on various levels : ferritin, serum iron, transferrin saturation, haemoglobin, red blood cell count.

Personally, I go by the results of an iron panel. People in the UK can get an iron panel done privately with a finger-prick test :

medichecks.com/iron-tests/i...

A useful link for possible anaemia - there are multiple causes :

medichecks.com/iron-tests/i...

klr31 profile image
klr31

Could it be air hunger? Are you optimally medicated?

Karen

Eddie83 profile image
Eddie83

I had a severe problem with getting enough oxygen while I was hypothyroid. Ask your doc for an FT3 test. Just because your TSH or FT4 is ok, doesn't mean you're converting right.

ilyfunnybunny profile image
ilyfunnybunny

Hi foxyeyes,

I have had the same breathlessness in the past (so bad that I couldn't talk on the phone or finish a long sentence, and I worried that I had lung scarring, COPD, or cancer... at age 25), but it has resolved completely after increasing my T3, iron, B12, and perhaps magnesium had something to do with it as well.

I know it can be incredibly distressing to feel like you can't draw a complete breath, but the good news is that it's probably a temporary symptom that will resolve with more complete treatment :)

foxyeyes profile image
foxyeyes in reply to ilyfunnybunny

thanks ilyfunnybunny made me feel a bit better

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