This came out of the blue: Last month I was... - Thyroid UK

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This came out of the blue

yesendi profile image
46 Replies

Last month I was admitted to the emergency room for severe abdominal pain, a Ct revealed colitis but it also pick up an "accidental" find on my lungs and the emergency Dr diagnosed as bacterial pneumonia. Now, I was shocked to see that on the CT scan report, shocked because I have not had a cold in about ten years, I have no cough, fever or anything else indicating there is an issue with my lungs( I am a long distance runner).

Had an appointment with my gp and had another CT scan and my gp diagnosed me with bronchiectasis, she told me that this is chronic lung inflammation and a permanent condition and that there is some irreversible lung damage. I am going to see a pulmonary specialist next month and go from there. I am still in shock! Has anyone gone thru this? I would love to hear what you all think.

Also, I am a little confused on my Vit D levels results and here they are:

Vit D2, 1,25(OH)2 <8

VIT D3, 1,25(OH)2 25

Vit D, 1,25(OH)2 total 25

Are this the correct tests? I would really appreciate your input on this too.

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yesendi
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46 Replies
SlowDragon profile image
SlowDragonAdministrator

Don’t understand your vitamin D results at all

If in UK units are usually nmol

Under 25nmol extremely deficient

25-50nmol insufficiency

50-75nmol inadequate

Have you had B12, folate and ferritin tested

yesendi profile image
yesendi in reply to SlowDragon

I am confused as well the vit D is tested in pg/mL I don't know what pg stands for.

other vit results are as follow but no folate was tested.

B12 683 (211-946)

Ferritin 125 (13-150)

SeasideSusie profile image
SeasideSusieRemembering in reply to yesendi

I am confused as well the vit D is tested in pg/mL I don't know what pg stands for.

pg/ml is the unit of measurement. We usually see nmol/L or ng/ml for Vit D.

I have bronchiectasis. Lots of information about it here, click on each heading:

blf.org.uk/support-for-you/...

And you might find the British Lung Foundation forum helpful:

healthunlocked.com/blf

yesendi profile image
yesendi in reply to SeasideSusie

Thanks Seaside Susie. I will look at the links you provided. I guess we both suffer from the same thing. How long ago were you diagnosed? Does the condition affects your quality of life? I am worry about that.

SeasideSusie profile image
SeasideSusieRemembering in reply to yesendi

I was diagnosed with COPD in 2013. After a CT scan in 2016 I had the diagnosis of bronchiectasis.

Yes, it does affect my quality of life considerably and at present it's mild. It's slowly progressive. I also have colonised pseudomonas in my lungs so one very important thing is to avoid infection which can make it flare up.

yesendi profile image
yesendi in reply to SeasideSusie

Thanks Susie, I just want to know what I am in for. So far as now I am asymptomatic and I feel as if nothing is wrong but like you say is progressive so I just have to make the most of my life while I can. I am anxious as to what the pulmonary specialist is going to tell me. No need to drive myself crazy, is not going to help any...right?

SeasideSusie profile image
SeasideSusieRemembering in reply to yesendi

Everyone is different so it's possible that you may not experience deterioration for a long time. Read through those links I gave you from the British Lung Foundation and stay away from Google.

You are in the US and treatment/care could be better than here in the UK. If you can come under the care of a bronchiectasis specialist that would be better than a general respiratory consultant.

Olivua profile image
Olivua in reply to yesendi

I had that for two months pneumonia Bronchitis and the bronch you had and pleuracy... Several rounds of antibiotics. And iv and Steroids.. And am good now no damage scans Mri etc... I Had walking pneumonia as u have... I Was not aware... Am great now.. Still a lil weak and thyroid is settling.. Really thought I was a gonner... Sit tight Don't Panick and don't read investigate anything or Google or u will go mad slowly. Or even quickly.... Day at a time.. Don't push urself and hopefully lungs will repair.. Like mine did... I Had whooping cough at 6 months and it left its mark..... Hope this helps xx

helvella profile image
helvellaAdministratorThyroid UK in reply to yesendi

Hopefully, this might help:

dropbox.com/s/sgv815w8hkexl...

And this:

dropbox.com/s/o1r3h7oq7d7q0...

yesendi profile image
yesendi in reply to helvella

I hope so too but I am going to think very hard into translating this table were I can understand it and my brain is not up for deep thinking right now :-)

LAHs profile image
LAHs in reply to yesendi

Pico Grams.

in reply to yesendi

I just realized in the last week that lab results are expressed differently in the US as compared to the U.K.

yesendi profile image
yesendi in reply to

They are, we need an universal testing form that will make all of our lives easier.

Jazzw profile image
Jazzw in reply to SlowDragon

I think maybe the “2” after (OH) is supposed to be subscript (like the 2 in H2O)? So most of that isn’t the result—it’s the description of what’s being tested. The ranges haven’t been provided.

So yesendi the results are

Vit D2 - <8 pg/ml

Vit D3 - 25 pg/ml

Total Vit D - 25 pg/ml

So now we need to convert pg/ml to something we understand... n/mol or ng/ml

yesendi profile image
yesendi in reply to Jazzw

Yea, I have been trying to find out how to convert the values but I haven't been able to find a conversion table. I'll keep looking.

Jazzw profile image
Jazzw in reply to yesendi

I’ve been looking too! What I’ve found so far didn’t make sense...

yesendi profile image
yesendi in reply to Jazzw

Exactly! I don't understand why labs are not consistent with the measurement units so folks like us can understand. Having a vit D universal language will be ideal. In the meantime lest keep looking>

Jazzw profile image
Jazzw in reply to yesendi

I think this is as close as I can get.

It seems that Vit D2 is measured in pg/ml. See emedicine.medscape.com/arti...

I would say that <8 is not a good result... Not if the normal range starts at 18.

But I’m not sure that Vit D3 is measured in pg/ml, which is perhaps why we can’t find it...

Does it definitely say that by the Vit D3 result?

yesendi profile image
yesendi in reply to Jazzw

Yes, that's what it says but I can go back to the results and double check.

yesendi profile image
yesendi in reply to Jazzw

Jazzw, All is so confusing, I thought the Vit d3 levels are more important than D2? The article's reference range are (18-78) I wondered if it applies only to D2 or maybe d3 also? I need a nap :-)

helvella profile image
helvellaAdministratorThyroid UK in reply to yesendi

Ignore D2 and D3, just look at total.

It is saying that your D3 level is the same as your total - that is, the D2 is so low it is forgettable.

If you do not supplement with a D2 product, only D3, this is not surprising.

yesendi profile image
yesendi in reply to helvella

Thank you! I needed to hear that! and yes, I only supplement with D3. I still need a good D3 supplement thou.

SlowDragon profile image
SlowDragonAdministrator in reply to yesendi

If in the UK get private test here £29

vitamindtest.org.uk

Results seem to suggest your results are low

yesendi profile image
yesendi in reply to SlowDragon

Yea, they are low. I asked my Dr for a script for vitamin D yesterday hopefully she called in waiting for the pharmacy to call me. I am in the USA.

Thanks SlowDragon.

SlowDragon profile image
SlowDragonAdministrator in reply to yesendi

Great interview about importance of good vitamin D

youtu.be/74F22bjBmqE

yesendi profile image
yesendi in reply to SlowDragon

Nice! thank you! I am so glad to have found this site. You guys are very helpful and knowledgeable. You have no idea how much I appreciate you all.

in reply to yesendi

If you are in the US and are not satisfied with explanations or just want a second opinion, the best hospital for lungs iin the country is in Denver.

yesendi profile image
yesendi in reply to

Thank you! I am actually quite happy with Dr's here in Iowa, they al are very caring and always explain things very well to me...so far.

Batty1 profile image
Batty1 in reply to yesendi

This Vit D thing is confusing :) I take Vit D3 and Vit K thats what I was told here.

yesendi profile image
yesendi in reply to Batty1

What brands do you take and are they helping you?

LAHs profile image
LAHs in reply to yesendi

1 nanogram = 1000picogram. The pg measurement is a bit more precise because it's units are smaller. It's a bit like calling 11.99 inches 1 foot.

yesendi profile image
yesendi in reply to LAHs

Yea, the reason I wasn't understanding the results is because the tested D2 instead of D3

LAHs profile image
LAHs in reply to yesendi

You raise a good point about the different D measurements. One year I worked outside for about 8 months in the blazing Californian sun. I wore shorts, a T-shirt and no hat. I knew this was a bad thing but I just kept going. Towards the end of the season, about September I had a scheduled blood test where as well as thyroid stuff they also measured my vitamin D level. They were found to be very low! I don't usually ask my doc questions because he doesn't usually know the answers but this time I did because this was so blatantly wrong I thought I should point it out. He seemed to understand the problem and he just answered that there are different types of D and maybe they did the wrong one. Sort of a rubbish answer but at least I learned that Ds can be different, I am not sure which one is related to your sun exposure, should be all of them I think.

yesendi profile image
yesendi in reply to LAHs

D2 comes mainly from plants and D3 besides supplements comes from animal source and sun. D3 is the one your body needs the most for bone health and most everything. It's sad that one needs to be fighting for our own health at all times.

LAHs profile image
LAHs in reply to yesendi

Oh, thank you! Another little piece of info that will help keep us alive and well. Most Endos do not have all these facts together - they should read this forum.

yesendi profile image
yesendi in reply to LAHs

Sadly, that is the truth! Some probably know things but they hide them from us because there are more interested on giving us drugs. Case in point, my GP kept telling me that my cholesterol is high and that I should be taking statins, I absolutely refused to take statins because of the muscle damage they cause. I ask her to prescribe some Cytomel(T3) instead and then only then my cholesterol will come down. She agreed with the Cytomel and prescribed me the smalles dose of 5 mcg and guess what! my last blood test two weeks ago my cholesterol dropped by 30 points!!.

She was happy about it but didn't say anything about "my theory" that's what she said when I brought up the Cytomel and I didn't want to say "I told you so"

LyraBelasqua profile image
LyraBelasqua

You've probably gleaned this from the answers above, but:-

What you had tested is 1,25(OH)2 (calcitriol), which is the active form of vitamin D.

What is usually tested, and is actually a more useful test, is 25(OH) D (which is a prohormone I think).

D3 is cholecalciferol. In supplements it is usually derived from animal products, though also occasionally from lichen I think.

D2 is ergocalciferol, derived from fungi. In supplemental form it can quite easily lead to toxicity. But until quite recently in the US it was the *only* form available on prescription.

Usually in blood tests the totals of D2 and D3 seem to be combined in one result, but sometimes they are listed separately. Best to have mostly D3.

yesendi profile image
yesendi in reply to LyraBelasqua

Yes! I learned about it Friday night. I research and research about the difference on D2 and D3.

I emailed my Dr this AM requesting a re-test for the right D. Hopefully she comes thru(I also hope that she won't fired me) :-)

Teras profile image
Teras

Did they test your calcium level?

yesendi profile image
yesendi in reply to Teras

Yes, and my calcium level looks really at 9 something. I don't remember the range but I think the high limit is a little over 10?

JD138 profile image
JD138

So sorry you have something else to deal with. Good luck. JD.

yesendi profile image
yesendi in reply to JD138

Thank you! I actually feel really good...super healthy and all that :-)

Batty1 profile image
Batty1

No, Could the lung thing be mold related. I feel for you my friend has ulcer colitis and she is miserable.

yesendi profile image
yesendi in reply to Batty1

Luckily for me there is no ulcer just inflammation and I feel 100% now. Thanks!

BonnieG123 profile image
BonnieG123

Some of the meds we take for RA can cause some irreversible damage. Check the side affects of the meds you are on. You will be very surprised at what some can do. Good luck with your treatment on this new condition. God bless you.

yesendi profile image
yesendi in reply to BonnieG123

I take nothing else other than thyroid replacement and Vit D so no worries there!

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