Confused and Frustrated

[Essex21]

Hi Everyone,

I have posted on here recently a few times and appreciate everyone's comments and suggestions, it's great to know there's support out there.

I'm currently in Sydney until Jan 2014 and then will return home to the UK. Having had numerous Thyroid tests (TSH, FT4 & FT3) they are fluctuating but GP's and Endo's do not want to know. I have symptoms of Hypo/Hyper/Hyperpara and have done for a long time now. I actually wrote a complaint letter to Northern Sydney Local Health District about the Endo Specialist who was very rude and very dismissive of anything I had to ask, she didn't want to know as my ranges are "normal" (that dreaded word) and basically said my GP didn't need to refer me to an Endocrinology Specialist, he was over reacting.

I'm just confused as I know lab ranges are all different but I have been researching for a while now as I have elevated calcium levels. The lab ranges for Calcium here are 2.10-2.55 mmol/L.

According the the link below, the UK ranges are 2.1-2.6 mmol/L which would make my Calcium levels sky high but nobody here wants to know. I'm just confused how they can have different ranges in different countries. My latest Calcium level is 2.55 mmol/L

hpth.org.uk/hpth.php?id=154

Very confused, tired and fed up.

X

[Clutter]

No point in comparing Oz & UK ranges. They're not even standard within the UK.

Have your VitD, ferritin, B12 and folate been tested?

Can you see another GP or endo who will treat your symptoms and not your labs? They're just as bloody back here in blighty btw.

[Essex21]

I just don't understand how the ranges can be so different. Not had the tests you mentioned, silly question but what would they reveal? I have to pay $70 a time to see a GP here not that it's an excuse but I feel like I pay just to be told "your ranges are normal, you're not feeling unwell because of your Thyroid and Calcium" where's that brick wall to bang my head against!

[Hidden]

Hello.just read your post and just to say IMHO it doesn't seem as if calcium is particularly high,top of Aussie range and just below for uk range at 2.55, but it is the corrected calcium that is the more vital reading I think.

[Essex21]

Hi. My corrected calcium has both times been 2.54 mmol/L always seems to be the high end.

[Essex21]

Sorry I wanted to add, first time Calcium was 2.66 mmol/L then corrected 2.55 mmol/L. Second time it was 2.56 mmol/L and not corrected. Now it's 2.54 mmol/L.

[Essex21]

Having a terrible blonde moment today. Does anybody know what RDW means on a blood test? Mine ALWAYS come back low and have done for months but when I ask what it means, I've always been told it's not really sufficient! I currently have white patches on my back, went to my GP last year and saw 2 different GP's for 2nd opinion, one said yeast infection and to try a special shampoo on it, it never fully went away and now it's back. The other GP said Vitiligo. I read this, should I be nagging my GP for more tests or something?

"Vitiligo seems to be somewhat more common in people with certain autoimmune diseases, including hyperthyroidism (an overactive thyroid gland), adrenocortical insufficiency (the adrenal gland does not produce enough of the hormone called corticosteroid), alopecia areata (patches of baldness), and pernicious anemia (a low level of red blood cells caused by the failure of the body to absorb vitamin B12). Scientists do not know the reason for the association between vitiligo and these autoimmune diseases. However, most people with vitiligo have no other autoimmune disease"

[Hidden in reply to Essex21]

Low RDW:

medfriendly.com/redcelldist...

"A low RDW means that the red blood cells vary very little in size. One reason for a low RDW level is macrocytic anemia. Macrocytic anemia is a blood disorder in which not enough red blood cells are produced, but the ones that are present are large. Another cause of a low RDW level is microcytic anemia. Microcytic anemia is a condition in which abnormally small red blood cells are present. In these two disorders the red blood cells do not vary much in size because they are either all small or all large. This is what causes the RDW level to be low."

Macrocytic anaemia is associated with B12/folate deficiency, microcytic anaemia with iron deficiency. Have you ever had your B12, folate and iron/ferritin tested? Do you have results for MCV, MCH, MCHC? Vitiligo is associated with pernicious anaemia (B12 def), and if I remember rightly from your last post I may have given you this link:

b12deficiency.info

[Loopycat]

Sorry to hear that you're struggling - it's one of the hurdles. The Australian range is actually slightly narrower according to your figures - both start at 2.1 but the U.K. One goes an extra 0.05 higher so you'd be under here too. If the doctors don't think it's your calcium they ought to focus on what else is causing your symptoms

[bantam12]

You cannot compare ranges from different hospitals and countries as the assay used will be different. You say the calcium range for the UK ends at 2.6, for my area the range ends at 2.65 because they use a different assay. The highest my calcium has been so far is 2.86 and even that is not considered very high, to be worryingly high and to be causing symptoms it would need to be over 3.

Your pth is normal so there is no indication of hyper pth, if it goes above the range along with a higher calcium then the doctors might be interested, until then you should concentrate on looking at other reasons for feeling unwell.

[Moggie]

I think I linked you this before but I honestly do think that these people will be your best bet in answering your questions as they know so much about calcium/parathyroid levels.

parathyroid-forum.co.uk/

Moggie x

[bantam12]

I'm on that site Moggie as I do have hpth. I'm not sure anyone new can join these days as Simon has disappeared so nobody on admin. Essex should be able to view the posts but nothing more than that.

[Moggie in reply to bantam12]

What a shame - when I thought I had parathyroid troubles that site was invaluable to me. How long has he been AWOL.

Still lots of valuable info on there for him to read though and well worth a visit. So who is keeping it running?

Moggie x

[bantam12]

He hasn't been on the site for quite while and we have had no replies to messages. Nobody can take over running it because we can't contact him so currently we are just using it until it is deleted. We have talked about starting up another site when the time comes but there aren't many members so it may just cease to exist.

[Moggie in reply to bantam12]

How strange - so he could actually be unwell. I hope he isn't as he has helped an awful lot of people. Nice of you all to think of starting up another site though if/when that one closes.

I hope someone hears from him soon as I hate to think of someone unwell and on their own.

Moggie x

[bantam12 in reply to Moggie]

We are assuming he is ill as he was having some problems before he went silent but it's very odd that he didn't tell us and give us the chance to take over the site before he disappeared.

[Moggie in reply to bantam12]

I think when you are very poorly all rational thoughts go out of the window don't they and your priorities change.

Sorry Essex for high jacking your post.

Moggie x

[Hidden]

So what do your Oz medicos diagnose from your symptoms/labs, Essex? If you are unwell, you need answers and treatment. We had a thread here a little while ago of which the nub is that we (as patients) should ask our medical professionals "well, if you don't think I am ill with xxxx and/or you won't sanction tests - what DO you think is wrong? Cos something is." I'm afraid you won't necessarily find it easier to get tested or diagnosed when you get back to GB. Although at least you won't have to pay for your own lab tests!

[Essex21]

Thank you all. I haven't been tested for anything Anaemia related so I will see my GP about these tests and also the Antibodies as the Edno suggested. Hampster1 that B12 link was very helpful, thank you.