Breathlessness

[LuluCops]

Does anyone else suffer from breathlessness as a symptom? I was hoping mine would ease with treatment starting, but it hasn’t, it hasn’t even eased. I also have Hashimotos and Addison’s disease, is it a symptom exclusive to B12 deficiency, or is there a crossover?

People keep asking me if it’s like asthma, and suggest I use a pump, but it’s not, it’s more like I can’t get my breath OUT! I don’t just get it if I do anything either, I can literally just be talking or standing/ sitting and all of a sudden I won’t be able to breath and it’s like someone sitting on my chest and holding my heart!

Any advice? Thank you

[Nackapan]

Have you had iron and ferritin checked too

It is also a symptom of b12 deficiency . Get checked out if worrying you

[LuluCops]

Yes, just before Christmas and both were low.

I asked about it at my last endo appointment(same time as the tests) and she basically dismissed it.

I SI daily, because my B12 was at the lower end of the reference age- just, but according to the haematologist the GP sent the results to, they were fine and I wasn’t deficient! Even though at the time I had a huge list of symptoms including neurological symptoms, and a strong family history of PA, and autoimmune illnesses, plus having two autoimmune diseases myself!!

So I decided to take matters into my own hands, and started SI, I was so poorly I decided to do daily loading injections instead of every other day, then after the initial loading doses, I tried going to every other day as I didn’t want to overload myself and make myself more ill, but I just couldn’t cope with it, by the end of the second day I’d be dropping and would crash by 5 and sleep until 7-8 the following morning!!

I don’t have many persistent symptoms now except for brain fog, some cognitive issues and this damn breathlessness! Oh and very high bp which flummoxes everyone as I have Addisons and this is usually low blood pressure which I used to have up until March when I had a steroid injection into my back! xx

[flosslechops in reply to LuluCops]

I've had breathlessness all my life,as though my lungs are just not big enough for the amount of air I need(dyspnea?),I can get breathless just putting my shoes on!I am under investigation for acromegaly at the moment(I have a cousin with addisons disease and my niece has a prolactinoma and secondary adrenal insufficiency)I discovered I don't absorb b12 last year and I find that iron supplements only help to a certain degree as well as the usual constipation taking its toll!just before christmas I bought an amino acid complex and have been taking it daily(I SI every other day at the moment)and it does seem to be helping my symptoms including the breathlessness,this is just my experience x

[Foggyme Administrator in reply to flosslechops]

Hi flosslechops. Just so that LuluCops is aware, branched chain amino acid supplements (amino acid complex) can cause raised blood pressure so may not be suitable for anyone who already suffers from this (as LuluCops does). Note that you add the rider that amino acid complex may not be suitable for everyone - so thank you for that 🙂.

Here's more information about branched chain amino acids:

webmd.com/vitamins/ai/ingre...

Lulucops - breathlessness can be caused by B12 deficiency (known as ‘the sighs’) but can also have other causes too, as you suspect (iron deficiency anaemia being one). Has your GP checked your ferritin levels and done a full iron panel (to check for iron deficiency anaemia - as Nackapan suggests)? This is a common cause of breathlessness and those with B12 deficiency often get other deficiencies too.

Folate deficiency can also cause breathlessness- have you had your folate levels checked?

If you had macrocytic anaemia (large red blood cells) when diagnosed with B12 deficiency, potassium levels may initially drop when commencing B12 Injections (potassium is required for the repair of red blood cells so potassium levels may fall for a few weeks whilst this repair takes place). Your GP can take bloods to check potassium levels but in the meantime you may benefit from increasing dietary intake of potassium (lots of ideas about how to do this on the internet). Please don’t be tempted to take potassium supplements - these can be dangerous if you don’t actually need potassium and should only ever be taken via GP prescription and under medical supervision.

I note from a post on another forum that you were considering taking several other supplements. If you’ve gone down that route might be a good idea to check them out at the webmed link above - if you are taking them, they may (perhaps in part) be responsible for some of your ongoing symptoms. Take particular care with high dose supplements - they can cause all sorts of issues if you don't actually need them (note that amino acids may have been in the mix - if so, may we’ll be responsible for your currently unresolved breathlessness and unexplained high blood pressure). Also - B6 can be neuro toxic - even if taken at relatively low doses if you don't need it - so take care if contemplating (or taking) high strength B complex 😉. Vitamin A and vitamin D and iron are other supplements that can be toxic if over-supplemented.

Also - is your Hashimito's and Addison’s well controlled?

If you are just beginning treatment for B12 deficiency it can take some time for symptoms to abate (especially neurological ones) but everyone’s different and recovery rates for different symptoms cannot be predicted - unfortunately.

Assume you’re under the care of an endocrinologist for the Hashimoto's and Addision's?

Also - Addison’s and Hashimoto's are autoimmune diseases - and autoimmune diseases tend to travel in clusters. If symptoms persist, worth asking your GP to run an autoimmune panel to check for other underlying autoimmune conditions (if they haven't already done so). Not suggesting you have another autoimmune condition but under the circumstances (and if you don't improve), certainly worth ruling out.

Suggest that you discuss the breathlessness again with your GP. And if it gets worse, you develop blue lips or peripheries, feel dizzy, become pale, cold or clammy, get any chest, back pain, or persistent palpitations, then it would be advisable to seek immediate medical advice.

Sounds like you’re having a pretty miserable time so do hope you find some answers soon. Good luck and let us know how you get on.

[Sita505USA in reply to LuluCops]

I have breathlessness and heart palpitations that get much worse when my iron and ferritin are low.

Gentle Iron by Solgar doesn’t constipate me and everything else does. It really does increase my iron levels. I am so sorry that your doctors aren’t being more helpful.

I hope you feel much better soon. Sita

[Emmers5]

I was still occasionally breathless for about a year after starting injections and I understand how awful it is. Good luck to you!!!!!

[weeblessings4]

If you just started injections - it can take some time for symptoms to improve. I was told it could take at least 6 months to a year. Also many other things can cause this: heart issues, lung issues and or in my case Cushing's Disease. So for me right now I'm not sure how much of my shortness of breath is due to the B12 deficiency or Cushing's Disease. I guess I'll find out once the tumor is removed.

[EyeandDry]

Totally agree with Nackapan. I was b12 and ferritin deficient. Couldn’t climb three stairs without stopping to get my breath. I now SI B12 once per month and when ferritin falls very low in range, my GP will organise an iron infusion.