Update on my daughters rheumy appoitment - LUPUS UK


28,870 members25,287 posts

Update on my daughters rheumy appoitment

Rush2112 profile image

Well that was a roller coaster we arrived and his first words to her was why are you here well that did it my normally very controlled articulate daughter burst into tears not sure who was more shocked me or Dr she kept apologising for being there and said she would go

After she a composed herself he became very very helpful

Retook all her history and really listen to her

Some strange things came out of meeting one being that she had confusing lupus results over the years she has apparently had negative blood results mildly positive and strongly positive he said this is unusual because they shouldn't come and go

He said that her ferritin of 19 was normal even being on supplements for GP for 10 moths he said that once you get in normal range body doesn't necessarily keep adding ?

Any way he said he didn't think her current symptoms were lupus but he said something was going on he tested her flexibility which he said was a little to flexiable in hands and her right leg her blood pressure in right arm was to high but left ok do not no what that means or what he was looking for

He also confirmed she has a small fAt pad on back of neck

Chest pains he said were not heart as it was not effected by breathing worse when lying down

He has ordered some blood test one that has to be done at exactly 9 in morning he didn't mention cushing but it was diffently what he was checking as I have learnt a lot from the wonderful people on this and thyroid UK site

So not a good start but ended ok and at least she is having tests one last thing that I will have to post on thyroid site

I asked him about her thyroid and he looked up past tests

1 year ago and 18 moths ago I could not see ranges on his computer but he did say they were normal at 5.00 and 5. 8

And even without ranges I know the thyroid UK will have something to say about that

Thanks for listening and your support

6 Replies

Hi and hope you can both pull some positives from the appointment.

I have also had fluctuating Lupus blood results over the years and since having thyroid cancer,so total thyroidectomy , have had been on overly suppressive treatment with levothyroxine bringing results of between 0.5 and 0.02! Know that fluctuating thyroid results reflect on my Lupus flares.

Noticed the flexible hands etc. Have you looked up Ehlers Danlos hypermobilty? I also suffer from this as do others on here and it does not just make you flexible it has effects on all parts of body.Have a look and see if this sounds like any of your daughters problems as it can be overlooked by medics.

Hope you have a good weekend


Rush2112 profile image
Rush2112 in reply to littleeffie

Thanks littleeffie

I know it's a strange he did say he wasn't saying she didn't have lupus because some results were strong positive he just said it was unusual but this explains why some people have such trouble being diagnosed depending on the bloods taken on day we have looked helpers danlos because when she was at uni a friend approached her because she thought she had lupus but in fact she was eventually diagnosed with danlos a lot of symptoms do fit but it somehow doesn't feel right however cushings seems to fit totally except she still has normal periods I really don't want her to have anything else since she was only 12 when lupus was diagnosed I wanted it to be that I know lupus is horrible and we nearly lost her a couple of times when she was younger

But I have got used to dealing with it

The unknown is scarey she's my baby even if she is 26

Barnclown profile image
Barnclown in reply to Rush2112

Thanks so much for this update. Am wishing you & your daughter all the very best....and feeling that this appt has been vvv important for all involved including this consultant: big step forward in the fairground ride that is the diagnostic process👏👏👏👏🍀

Rush2112 profile image
Rush2112 in reply to Barnclown

Thank you so much for your support

Hi Rush

I can echo what Barnclown has eloquently said. It's good the Rheumy was very attentive when your daughter got upset, no bad thing I've found over the years if not done very often it can be very effective!. Shows your both feeling the stress!. If your daughters problems at the mo he doesn't feel are Lupus caused, hopefully with the blood results he will come up with something treatable to help her. Do you have to go back for results?. Good luck and keep us posted, hope she feels better soon. You must feel better to be listened to. XX

Rush2112 profile image
Rush2112 in reply to misty14

Well he gave her another appoitment for 3 months I would like to think that if her blood results show anything it would be brought forward

However I think if it is cushing she would have to be referred to a endrocolgist we will have to wait and see

Thank you for your support


You may also like...