Syncathin test in Southampton?

[Trenny]

Has anyone in the Winchester or Southampton ( Hants) area had a Syncathin test? My rheumy says that 'they don't do it here'. I am down to 4.5mg Prednisolone, having reduced by the dead slow method, having been dx with GCA in January 2013, but get very tired and could sleep all day and night if I let myself. I am 86, so it may be old age!

[DorsetLady PMRGCAuk volunteer]

Could be! But not necessarily, I found myself very fatigued when I was reducing from 6mg down to 3mg - going slowly like you. But eventually everything seem to click back in and from then on down to zero much better.

As for your Rheumy's comment, afraid lots of them seem to have their own ways! Bless 'em!

Can only suggest you hang on there for the time being, and if things don't improve try asking your GP to check for anything else it could be. But I suspect you may get the trite response -"well it's your age".

[Pat9442]

In January I felt very ill indeed having tapered down to 3mg pred. Vomiting, amazing weight loss, dizziness, anorexia etc. A light bulb moment made me consider adrenal insufficiency. My rheumy agreed with me and that a synacthen test might be a good idea. I increased the pred and the symptoms went away. I have been referred to endocrinology and have an appointment in June . I am under Winchester hospital so I assume they must do the tests. Don't know about Southampton

[bowler]

I can't believe that an area as big as Winchester and Southampton that no hospital does a syncathin test, where would patients go to get one if they really needed it ? I think you are being fobbed off. However the tiredness maybe your age, but could be many things, anaemia for example, which can happen in people your age and who take Prednisolone,

[PMRpro Ambassador]

Oh dear lord - where do they get their ideas from! I find it difficult to believe that a university hospital doesn't do them...

On looking: the ICU handbook mentions them for certain patients so they certainly DO do them in Southampton.

uhs.nhs.uk/Media/SUHTIntern...

However - you may find this post interesting;

healthunlocked.com/thyroidu...

[Whittlesey in reply to PMRpro]

Excellent on this, Pmrpro.

I have asked the rheumatologist about the syncathin test. She said, " there are so many protein tests, not sure which one that is ."

I let it go.

These are excellent links -- this is such an important part of dealing w GCA and PMR and prednisone.

Much appreciated.

To our good health

[Trenny in reply to PMRpro]

I have just looked at this post. My tiredness could well be linked to thyroid insufficiency as I have recently had my dose reduced from 150mcg to 100mcg. I am a bit out of my depth now, but will 'phone the lab to ask about when I should take my last dose of pred and thyroxin - and sinemet, for that matter. My cortisol blood test is in two weeks. I'll report back!

[jinasc]

Southampton General Hospital has two Endocrinology Consultants: Mayank Patel and

Derek Sandeman.

Why pay for a test, you have paid into the NHS since 1948 and before that your parents paid your GP direct.

A Synathcen Test as Pat9442 has arranged for at Winchester is what you need. There is no reason why you cannot ask your GP for a referral to either of the above Consultants.

I had one and had a lovely time, I took a book to read and because I was warm and in a comfortable chair I fell asleep. When all was over they woke me up with a cup of tea and handed me my book back which had fallen on the floor.

Just ask you need that test.

[Whittlesey]

Hi Trenny,

I also, taper the prednisone, for my GCA.

It makes me very tired and I have, at times, overwhelming fatigue.

It may be due to the adrenals not beginning to work again. This is what I understand.

If you feel you are fainting, would call the doctor. Cortisol is necessary for our organs.

Glad to hear you are 86! Looking forward to 'blogging' with you, when you are 87.

Wishing good health

[Trenny]

Many thanks, all. I saw my rheumy at Winchester this morning. She has given me the path lab form for a cortisol test, which she says they do before the syncathin test. This makes sense.

Has anyone had this? Presumably you do not have any prednisolone for 24 hours beforehand?

[PMRpro Ambassador in reply to Trenny]

I imagine not, no. However, if you ring the lab they will tell you the details.

[mega]

Hello Trenny, About 18 months ago, when I was trying to reduce my preds. from 5 after using for 5 years and gradually reducing, I asked my gp how 'they' could tell if the adrenals were working under their own steam and not still reliant on the pred. She replied that they can't - they can't tell whether the ?cortisol? is produced from the tablets or from the adrenals. I really don't know if it was ignorance or avoidance. Nevetheless, the test should be available to all . Have you got a friend/relative who can accompany you on your next Rheumy/gp visit?

I,too, have had GCA for the past 6+ years. So bad in the beginning that I had to crawl to my bedroom. Would either pass out or be away with the fairies when I struggled out of my chair and in the end used to sleep in it as well. I realised very early on that my head pains were somewhat relieved by sitting up.

Just this last week I have BEGUN to feel back to normal again - albeit weak because of immobility. I am only seven years behind you in age, Trenny so carry on fighting the fight, if you can summon up the energy to do so!

Best wishes, Mega.

[PMRpro Ambassador in reply to mega]

She was technically correct, you can't distinguish between pred and cortisol - but experts who know the background can tell if your adrenal glands are CAPABLE of producing cortisol in response to a stimulus. The amount of cortisol produced in the synacthen will be different for someone who is usually taking daily pred (you don't take it for 24 hours before the morning test, i.e. you delay your morning dose until after it is done).

But that they are CAPABLE of doing it doesn't mean they ARE doing it! Increasing fatigue as you try to reduce is the first sign.

[Trenny]

I had the test yesterday morning and in the evening the 'Emergency Doctor' telephoned to say that I should contact my GP first thing in the mornng , as the reading was very low. He said it was 67, when it should be over 100. I don't know what the units are. Needless to say I was in a bit of a panic.

When I contacted my doctor this morning she was much more relaxed and is going to contact my Rheumy today and will let me know if I should change my medication. She said to take the 4.5mg Pred as usual this morning and there was no urgency as I was looking OK. I was expecting to be told to increase the dose of pred by 5mg or more.

Any comments welcome.

[PMRpro Ambassador in reply to Trenny]

All sounds good!

[Trenny in reply to PMRpro]

It *would* be good if I had heard anything more from the Dr/Rheumy. When I try to 'phone the Dept no-one answers.

What would you do, PMRpro? Stay on the 4.5mg dose or put it up to 5 or 6mg?

[Trenny in reply to Trenny]

I have now had a telehone message from the Rheumy confirming that it is OK to stay on the 4.5mg dose. I would like to speak to her about this, but this is better than nothing, I suppose...

[PMRpro Ambassador in reply to Trenny]

Huh? That is presumably instead of reducing any further which really would be silly. If it were me I'd have gone back to 5mg - purely for simplicity and not having to mess about with cutting pills!

Do you feel OK? If so, stick with 5mg for the moment. That is what polkadot com was on for ages, I think she is on a bit more now.