Letter from Respiratory clinic & some test results.

Would appreciate opinions on the following.

Last summer GP referred me to Respiratory clinic ( due to shortness of breath that was obviously part of the B12 def he ignored) Waited 8 months for an appointment by which time no breathlessness, walking 2 miles with no problems thanks to S.i .

Letter arrived from consultant today ( I always request a copy) Says:

CT of chest is essentially normal along with normal lung function tests and other inflammatory markers however she has positive ANA.

Then another part of the letter says "normal blood tests for Serum ACE ? Serology and inflammatory markers but has slightly raised ANA and she does give a history of rosea type flush on her face.

Saturating 99% off air"

( the question mark above is theirs)

My hip and knee pain went with B12 injections. I've long suspected my immune system was iffy--- goitre, intolerant of many foods and prescribed meds.

I'm not sure if any of the above ties in with B12 but any views/ experience/ opinions welcome.

[Gambit62 Administrator]

I am inclined to think that the question mark is probably a typo given that ? is usually the same the same key as / but - only difference being the use of the shift key.

ANA is a marker that is raised in a lot of auto-immune conditions and PA - is an autoimmune condition.

[Hidden in reply to Gambit62]

Thanks for the info. Much appreciated.

I've got no family history known to me--- could be from a long line of hashimotos / PA / any other illness sufferers but have no knowledge and no way of finding out which is a tad frustrating as the info might be useful just now.

[JMN2017]

Hi Hidden

I think the '?' may be deliberate, rather than a typo, as it is often used in medical things. So, although this is out of context (tba), I read it as 'possible', if you see what I mean. So, if you raise the intonation after 'Serology' and/or 'Inflammatory markers', maybe you can see what I'm suggesting?

"Then another part of the letter says "normal blood tests for Serum ACE ? Serology and inflammatory markers"

Would you be prepared to post the whole letter, hiding any identification of yourself, consultant, hospital etc? If not, maybe you might be happy to PM me with this so I can see how it reads in better context? I won't take offence if you're not happy to, and whatever I read would be in total confidence, between you and me only.

What do you think?

J

[Hidden]

This is letter in full.

First page from Respiratory Unit, X Hospital to Rheumatology Team, X Hospital.

Dear Colleague

I would be grateful if you could please review this pleasant 62 year old lady who has been suffering from rosea type rash on her face since 2007 and has had partial benefit after sticking to a gluten free diet and using some steroid creams.

She was referred for breathlessness and her CT chest is essentially normal along with normal lung function tests and other inflammatory markets however she has positive ANA.

She denies any small joint synovitis. However patient feels she did have hip joint pain when she had a B12 deficiency.

I would be grateful for your opinion.

She has been discharged from the respiratory clinic.

Dr. Xxxx Locum Consultant.

Page 2.

Respiratory Clinic to G.P.

I reviewed Mrs D in clinic today. I am pleased to mention she has normal CT chest, normal full lung function tests, normal blood tests for Serum ACE, ? serology and inflammatory markers but she has a slightly raised ANA and she does give a history of a rosea type rash on her face since 2007.

She feels that her exercise tolerance has improved and she currently walks 2-3 miles.

Saturating 99% off air.

She has been discharged from the respiratory service but I will refer her to the rheumatologist for their opinion.

That's the whole letter. I don't feel ill as such, just more tired than I have been since I started s.i, slept for several hours yesterday afternoon. Had a lot of headaches recently but that could be pollen starting, it's my usual reaction to it.

Not really worried, just curious as to whether it is something auto immune and if so I'd rather find out what so at least my daughter has more info than I've had.

Thanks JMN2017 for reviewing letter for me.

[JMN2017]

Good morning Hidden

OK – my personal interpretation.

The ‘specialist’ at the Respiratory Clinic has run a lot of expensive investigations, clearly looking for a cause for your breathlessness. Nothing on CT, lung function tests and ACE so suspect he would then suspect inflammation, hence the ‘serology and inflammatory markers’, ie tests with results suggesting inflammation somewhere.

“? serology and inflammatory markers” ie where are the inflammatory markers he expected to see, indicating inflammation, because you show evidence of inflammation with the Rosea rash?

You’re able to walk 2-3 miles (wish I could ) and your Saturation levels were measured at 99%, ‘on air’ which I suspect means without any oxygen therapy, ie your lungs are better than most!!! The ‘normal’ range for Sats is 94% - 99%

He can’t explain it!!!

As a ”Rosea-type” rash is one of the many symptoms of B12 deficiency (I think?), could it be that this further backs up your thoughts re B12 deficiency. I wouldn’t think B12 deficiency would cause any inflammation.

So, in summary, I suspect he’s found little reason/cause for your breathlessness, pointed out your Rosea, but can’t explain it, and remains puzzled.

Such a waste of your time but can you put this to good use? Maybe you can use it as further bullets aimed at your GP as inflammation has been pretty well excluded by the Consultant??? Maybe you can use it as further ammunition aimed at your GP as inflammation has been pretty well excluded by the Consultant???

The money spent on wasted expensive investigations when you, without a medical degree, know all along what the problem is … it’s just so ridiculous, isn’t it?

As I have already said, this is only my personal interprettation. I'm not a doctor, but am a retired Ward Sister, so one does get to know the 'jargon' a bit. Regarding lung function tests etc, I'll check with a friend of mine who has a lot of lung issues and will have more knowledge of this than I do, just in case I've got something wrong. So, I'll confirm later in the day after I've been able to chat with her - it'll be after 11am, I'm afraid

J

[Foggyme Administrator]

Hi Hollyberry.

The slightly raised ANA, together with some of your symptoms, could be indicative of some kind of autoimmune condition (as far as I am aware, this not usually associated with PA) as you suspect.

Your will have been refered to a rheumatologist because these are the specialists who investigate, diagnose and treat autoimmune conditions. They will run full autoimmune screening tests for you and will be checking for things like rheumatoid arthritis, Sjögren's syndrome, Lupus...and a whole host of other possible conditions.

Having a raised ANA does not mean that you definately have an autoimmune condition since some people return a positive ANA result but have no underlying condition.

Hiwever, one problem with autoimmune conditions is that they are sometimes difficult to diagnose.

If your reheumatologist is 'on-the-ball' he/she should also consider your history and symptoms - even if your antibody screen returns negative results, if you fit' some of the diagnostic markers for any the various conditions, a rheumatologist will usually treat your symptoms and then reassess after a trail period.

It's possible to have an autoimmune condition without having raised inflammatory markers (I did) - and that's a good sign. When inflammatory markers are raised, it means any disease is in an active phase, the aim being to reduced that active phase (shown by reduced levels in inflammatory markers) through appropriate treatment - then manage any condition by o going treatment.

Rosacea is often found in autoimmune conditions, but this kind of flushing can also be present went having frequent injections of B12...so who knows 😖.

If you have (or have had in the past) any other rashes (prehaps re-occurring) your should tell the rheumatologist - particular if it's a red rash that appears over the nose and checks (called a malar of butterfly rash).

Also - autoimmune conditions often develop slowly over many years and if you have one, you may have had lots of odd symptoms, on and off, over the years - plus a medical history that you might not think is connected. Your rheumatologist will need all this information in order to help make a diagnosis (or not) so it would help if you made a list of all your symptoms and all your past medical history - and take along to hand over so they can put a copy in your medical records. (I did this - it was a very long list and I felt quite embarrassed but...some of the things that I didn't even think about turned out to be significant indicators that enabled me to get a diagnosis after many years of ill health). So don't feel uncomfortable...get it all down on paper 😄.

Your lung functions tests are all fine (99% oxygen saturation is very good).

And of course, there's the B12 deficency...Just wondering...are you self-injecting or did you manage to get your GP to treat you? Many cross-over symptoms between autoimmune conditions and B12 deficiency...so, it'd be good to try and make sure that your B12 deficency is not being under treated.

And last...anything going on with your thyroid - also common in B12 deficency and autoimmune conditions.

Anyway....good luck with the rheumatologist...let us know how you get on and post again if you need any further help.

👍

[Hidden]

Thank you JMN2017 And Foggyme for your very detailed replies.

I did tell the consultant that the breathlessness had been at its worst before I discovered the low B12 and I'd not had the it from 2 weeks after starting s.i. But he still insisted on the tests--/ I feel really bad using NHS money when it wasn't really necessary.

I was told by an eye specialist I had Rosecea --- it had spread into my eyes ( blepharitis) Cleared up with treatment though I've had 2 outbursts of bleph since. The Rosecea , more or less permanent, is the " butterfly" shape, gets worse in sunlight and I have to wear sunglasses most of the year as very sensitive eyes.

I'll start typing up medical history to take along next time. I'm keeping up s.i as and when necessary. My GP is as useful as a chocolate tea pot.

Goitre is much the same, though it does seem to increase and decrease in size. Perhaps I should keep a record of that and see if it matches up with any other changes.

Thanks again for your help, I really appreciate you taking the time.

[JMN2017]

@06hollyberry

"I feel really bad using NHS money when it wasn't really necessary"

I'm so sorry. I didn't mean to imply it was your fault. Definitely not your fault I was feeling angry that the GP, and then the 'specialist' just didn't credit you with being intelligent enough to listen to you, let alone taking it on board and checking it out. Why, oh why are the medical staff so 'arrogant'?

A friend confirmed the 'on air' meaning for me later this morning. I wasn't 100% sure but it seemed the logical thing. She's regularly having Lung Function stuff, being chronically ill with a strange 'syndrome' so I felt she would be in a good position to check with So, your lungs are in good shape, it would seem Well done

Pleased you are keeping records. I feel that is the best thing to do. A few years down the line, you won't remember such details so well but you will be able to read your records and I'm pretty certain it will be so clear that you've done the right thing.

Have you considered taking photos of your goitre, maybe annually or even 6-monthly and also measure the circumference of your neck with a tape measure at the same time? I don't know if this would show anything but you just never know. If, in a year, or two, your measurements show your goitre significantly shrunken, and have photos to show too, it would be something more tangible than just saying it looks smaller etc.

So, I wish you well and hope you can enjoy some better quality of life. Eventually, your GP will hopefully come to realise he's actually let you down when you really needed his help

J

[Hidden]

Thank you--- that's a really good idea taking some measurements. I'll do that.

I find it very odd that UK Drs don't listen or even look at the checklists I took along showing all the symptoms I had. I lived abroad for years, only saw a dr a few times for very minor things but totally different experience. Friends said the same.

Thanks for your expertise. Much appreciated.