The other C word (Covid)

Iam64

Sorry to read how difficult it’s been to get diagnosis doodle and dickens. I’ve been complaining about increasing breathlessness for 4 years. A young GP who had told me being 70 was the cause and I needed to accept that, wrote on my notes ‘query long covid’ after a bad chest infection around lock down. It took a private appointment with my cardiologist to get a referral for lung function tests. They resulted in referral to a respiratory consultant. He diagnosed mild copd, inhalers, referred me to the 8 week copd improve lung function course. This all took 12 months and I’m still waiting for the course 8 weeks later
It does increasingly seem we need to be proactive in managing our health

A young GP who had told me being 70 was the cause and I needed to accept

Good grief! Breathlessness is not normal at any age... talk about being fobbed off!

You might need to start chasing for that course - you can never be sure you haven't fallen through the cracks what with all the backlogged appointments. I did, and the doctor said, "oh dear, how did that happen"? I actually said - in a polite jokey tone, "you tell me - it's your system"!

You're right, we do have to be pro-active - and knowledgeable about out conditions, too.

Doodledog

Thanks. I am not going for the extra injections until I have the results of further tests, and I want to see if the supplements make a difference, too. I have been taking them for 6 weeks or so, which is not long enough to tell, and obviously Covid has set things back.

I will order folic acid for now, and will speak to the pharmacist if I end up getting extra B12 injections.

Yes, supplements are a long-game. I think something in the region of 3 months is a good yardstick - they are not magic pills!

There are those who think that the numbers the NHS sets for B12 normal range are too low... it's difficult to know quite who to believe.

You could really have done without Covid couldn't you!

Sorry to read how difficult it’s been to get diagnosis doodle and dickens. I’ve been complaining about increasing breathlessness for 4 years. A young GP who had told me being 70 was the cause and I needed to accept that, wrote on my notes ‘query long covid’ after a bad chest infection around lock down. It took a private appointment with my cardiologist to get a referral for lung function tests. They resulted in referral to a respiratory consultant. He diagnosed mild copd, inhalers, referred me to the 8 week copd improve lung function course. This all took 12 months and I’m still waiting for the course 8 weeks later
It does increasingly seem we need to be proactive in managing our health

Thanks. I am not going for the extra injections until I have the results of further tests, and I want to see if the supplements make a difference, too. I have been taking them for 6 weeks or so, which is not long enough to tell, and obviously Covid has set things back.

I will order folic acid for now, and will speak to the pharmacist if I end up getting extra B12 injections.

Doodledog

Thanks for your concern. It is frustrating, I agree.

I have been taking folate, but am about to reorder, and am not sure whether I need folic acid or folate. Do you know which is better in these circumstances?

I have found a local chemist who will give private injections of B12, but was waiting to see whether the supplements work and for the results of yet another test (which I haven't had yet) before making a decision on that. Covid has set things back, of course, so it's going to be yet more waiting, I think.

I think I'd go for the folic acid.

But you could ask the pharmacist who's going to give the injections. Pharmacists are very knowledgeable about drugs - sometimes much more so than GPs. Or, as I discovered, even more so than a gastro consultant who put me on a slow-release drug that the nature of the surgery he'd just performed escalated instead of slowly releasing it with what could have been lethal consequences... it was someone from the hospital pharmacy that queried the prescription!

See what he / she says.

Thanks for your concern. It is frustrating, I agree.

I have been taking folate, but am about to reorder, and am not sure whether I need folic acid or folate. Do you know which is better in these circumstances?

I have found a local chemist who will give private injections of B12, but was waiting to see whether the supplements work and for the results of yet another test (which I haven't had yet) before making a decision on that. Covid has set things back, of course, so it's going to be yet more waiting, I think.

Doodledog

I do have PA, and have recently made the connection between that, iron deficiency anaemia and low folate levels, and their impact on breathing issues. I am taking supplements on top of the quarterly B12 injections I have had for many years now.

Thanks for the tip though - it may be of use to others who were unaware of the link with breathing problems. It's not an obvious conclusion for a lay person to jump to, but it is there. My consultant doesn't think that it fits the pattern of my breathlessness, unfortunately, but I am continuing with the supplements anyway, as my levels of ferritin and folate were low at my last blood count. It is also worth mentioning that I had to specifically ask for a FBC with ferritin and folate measurements, as they are not included in routine tests (at my surgery anyway).

It is also worth mentioning that I had to specifically ask for a FBC with ferritin and folate measurements, as they are not included in routine tests (at my surgery anyway).

Snap! I guessed my ferritin and folate were not within normal range - and they weren't. Why do we have to dx ourselves? <<<sigh>>>

Although my numbers have increased, I still get breathless if I talk continuously for more than about 3 minutes.

Are you on a folic acid supplement? Apparently, it's essential to process the B12 injections.

I really sympathise. All health problems are a worry as you age, and breathing problems are horrible. But not knowing the cause - especially when you've had all the 'obvious' tests (have you had them all?) is dispiriting.

Wishing you healing from this damned Covid episode. My relatively fit and healthy son took a long time to feel his normal self, in spite of resting.

... I do wonder if you might need B12 injections monthly, instead of quarterly?

I do have PA, and have recently made the connection between that, iron deficiency anaemia and low folate levels, and their impact on breathing issues. I am taking supplements on top of the quarterly B12 injections I have had for many years now.

Thanks for the tip though - it may be of use to others who were unaware of the link with breathing problems. It's not an obvious conclusion for a lay person to jump to, but it is there. My consultant doesn't think that it fits the pattern of my breathlessness, unfortunately, but I am continuing with the supplements anyway, as my levels of ferritin and folate were low at my last blood count. It is also worth mentioning that I had to specifically ask for a FBC with ferritin and folate measurements, as they are not included in routine tests (at my surgery anyway).

Doodledog

I do have breathing problems but after four years and numerous tests no cause has been found, which is, I suspect, why I am not counted as CEV. I wish it were clearer about who qualifies for vaccinations and when they will get them. My surgery has always been very clear that they will not discuss when someone is likely to get an appointment for one, which I understand, as such calls will clog up reception, but it would be good to know who will not be offered one so that we can make choices accordingly.

In a similar situation, I'd write a short polite note to the surgery pointing out that you need to know in advance of autumn whether you will or will not be offered the vax so that you can make your own arrangements, or take specific precautions. It's not an unreasonable request, and doing it that way doesn't clog up the 'phone lines.

Regarding the breathing problems - this is just a thought, but have you had your B12 and Iron levels checked? I was deficient in both, and my breathing was affected to the point that I couldn't talk for more than a few 'sentences' without becoming breathless (in spite of my blood oxygen levels being consistently at 99%). A deficiency in either can cause problems with breathing.

I do have breathing problems but after four years and numerous tests no cause has been found, which is, I suspect, why I am not counted as CEV. I wish it were clearer about who qualifies for vaccinations and when they will get them. My surgery has always been very clear that they will not discuss when someone is likely to get an appointment for one, which I understand, as such calls will clog up reception, but it would be good to know who will not be offered one so that we can make choices accordingly.

Doodledog

I am still too young, unless I qualify on health grounds, but I haven’t done so so far, despite seeing a pulmonary consultant and having increasingly invasive tests for breathing problems. I don’t know if you need a diagnosis to qualify.

Maybe you should 'push' to be included in the CEV category - particularly if you have breathing problems?

I am still too young, unless I qualify on health grounds, but I haven’t done so so far, despite seeing a pulmonary consultant and having increasingly invasive tests for breathing problems. I don’t know if you need a diagnosis to qualify.

Out of curiosity, I went into NHS inform to check my eligibilty for both Covid and Flu vaccines.
Apparently vaccinations will begin at the beginning of September for those who are eligible.

Your surgery proactive Jj Haven’t heard from mine at all. I have heard that the government have restricted covid vax to over 65. Not over 50s as previously.

We’ve booked our NHS flu and Covid jabs for October after an invite by txt from our surgery.

So do I Iam.

I find it ‘disappointing’ that our government appears to be ignoring the recent spike and the new variant

Iam64

I read today that private covid testing kits are to be sold along with private immunisations
Also, that a new strain of covid has been found in several countries
Get well doodle

Yes, that’s right. My son told me that private Covid jabs will be available for £100 each. I’ve no idea if that’s right, or where he got the information. I haven’t seen him yet as he’s just returned from America where he was on holiday. He/they all caught Covid on the way over and weren’t great for a week but then recovered. He says he’s buying the vaccine for them when it becomes available. I’ll ask him tomorrow how he knows about the private vaccines and cost as we’re seeing him tomorrow for grandson’s birthday.

Luckily I think most of us Gransnetters will qualify for the free vaccine, but I believe it won’t be available for quite a while. Not sure when.

I know about the new strain too. That’s worrying. Especially since we don’t know when the vaccine programme will be rolled out.

Get well all Gransnetters who have Covid. Stay safe everyone else.

I read today that private covid testing kits are to be sold along with private immunisations
Also, that a new strain of covid has been found in several countries
Get well doodle

I don’t wish this on anyone. It’s like no bad cold I have ever had.

Me and DH tested positive last Saturday. We had both been ill for a week before our DDil (a nurse) suggested we do a covid test. I've fully recovered but DH is still not great. We are both fully vaccinated. There are lots of people saying they have 'bad colds'. I bet they actually have Covid. The schools go back in a couple of weeks. We are in for a bad autumn aren't we.

Another friend / neighbour has covid, she’s fit but v poorly right now
Get well everyone

Doodledog

I find that a large bowl of hot water laced with Olbas Oil is great for helping with breathing.

Have you tried menthol crystals instead of olbas, much more effective and cheaper than Olbas.
I have chronic lung conditions and was first given this in hospital in November 1977!
I remember the date, for I was newly harried and it was so strong, it nearly ripped my lungs out. 😉

I hope you feel an improvement today, DD.

I find that a large bowl of hot water laced with Olbas Oil is great for helping with breathing.

Doodledog

Oh no! I hope you have a mild dose and get over it quickly.

Thank you, I feel awful, Now got shooting pains in my elbows and hands. Living on peppermint tea!