Getting adrenal and thyroid function tests - will this help?

[whisperit]

I have been diagnosed with autoimmune/Sjogrens syndrome and interstitial lung disease for the last 7 months and been on daily prednisilone 20 or 15mg and hydroxychloroquine since then.

I've had a couple of one-off cortisol and TSH levels taken during this time, which I was told fell within normal limits.

However, I am keen to press for full thyroid and adrenal function tests.

Is there anything that is likely to persuade my consultants that this is necessary?

For example, will it help if I raise a recent, new symptom - a kind of 'mini panic attack'.

(what happens is that if I have a passing anxiety-making thought, I get a sudden rush of flushing, nausea and a racing heart).

Or does this sound silly? Are there more important/convincing symptoms or concerns I should raise?

I'd be grateful for any thoughts/experiences.

[greygoose]

I'm afraid doctors don't know very much about symptoms, especially not the more obscure ones. They might possibly know about fatigue/weight gain/hair loss, but not much else. And they're perfectly capable of putting all those down to depression!

Besides, as far as they're concerned, a TSH and a 9 o'clock cortisol is more than sufficient for the purpose of telling you it's all in your head and there's nothing wrong with your thyroid/adrenals. I'm afraid l don't know what you can do to change their minds except wear them down with constant nagging.

But, on the other hand, it is possible to have full tests done privately...

[whisperit in reply to greygoose]

Thanks, greygoose. My care to date has been very good, but I was dismayed to find that my concerns about adrenal function etc have been so easily disregarded. My cortisol and TSHs were done kind of randomly, late in the afternoon, so they would seem a little erm 'broad brush'?!

I will definitely continue the nagging and look into private tests in due course.

[greygoose in reply to whisperit]

Well, I have to say that doctors know less about adrenals than they do about thyroid - and that's saying a lot! I remember asking one doctor if he thought I might have an adrenal problem, and he just sat there, staring into space and muttering 'adrenals, adrenals...' as if he was trying to remember where they were. I think I blew one of his circuits by asking that question. He really had no idea.

Testing cortisol and TSH in the late afternoon is certainly not going to give you much useful information. I'm amazed the lab even did he cortisol late afternoon - I doubt they have a range for it. If I were you, in future, I would refuse all testing in the afternoon, and only allow it early in the morning.

[Howard39]

Hi

Greygoose is spot on there is a definite vacant look re adrenal and thyroid issues- it's like they've left the room!

Prednisone massively affects the adrenal gland so it's v important you get tested. ( doses 7-5 p day and above) it is wrong we have to pay privately but it is worth the money. The saliva test to name one is really good as gps tend to look at cortisol levels only and not dhea as well.

I am assuming they thought you must have been deficient in cortisol to give you some tablets. Whatever the results show if you need adrenal support it will not be on a ad hoc basis- you need to be in the best health you can and will need ongoing medication. ( and this is only a guess but some of the symptoms you mentioned could relate to too much cortisol at one of the four times of the day you are tested)

Check out

www DrMyhill.co.uk/adrenal_stress_profile_rest_results. Gives you all the possible results and what they mean.

Good luck and post those results.

[whisperit]

Thanks Howard39,

That is really helpful. As I understand it, my medication has been dictated purely by the need to control my auto-immune disorder (i.e. suppressing my immune system) and related symptoms (e.g. reduction lung inflammation and joint swelling). No-one has yet mentioned adrenal or thyroid function except when I make a point of raising it.

I have reviews with both my consultants in the next 10 days, so one way or another I will have a way forward soon.

[Ruthi]

To be honest, since most doctors only test TSH and regard sky high levels as 'normal' its not worth nagging about. I was left sick for nearly five years, with both my job and relationship in ruins because of the symptoms, but told I was fine, and effectively, it was all in my head. You could do private tests for the full range, of course.

I am dubious that adrenal testing will tell you very much now you are on steriods. You are effectively supplementing your natural hormone production with the prednisolone. And the doctors will tell you that it is essential to reduce the inflammation. I would expect that your mini panic attacks are due to high cortico-steriods, where a tiny excitement pushes you over the top of your personal limits. Knowing that is what is happening should help you get through and calm down.

There are natural approaches to reducing inflammation, including diet, turmeric, and other supplements. There is also some suggestion that inflammatory responses and AI responses are due to parasites and/or candida. To be honest I haven't seen much in the way of scientific studies, but I haven't looked all that hard. Its a scary prospect because AI diseases do permanent, rarely reversible damage. But on the other hand so do steriods. So you are between a rock and a hard place, and only you can decide how to manage your life and your health. Do LOTS of reading, and be prepared to despair at the levels of ignorance amongst doctors.

I don't want to scare you unnecessarily, but on the other hand I feel I have to tell my story. I had a cousin by marriage who was diagnosed with Rheumatiod Arthritis at the age of 18. Her inflammation was controlled by steriods until she contracted a serious (hospital acquired) infection when they had to be stopped, and her joints were severely damaged. But she went back on the steriods once recovered from the infection. At the age of 44 she caught a cold but had few symptoms. She died two days later. Her immune system simply hadn't functioned, and so the doctors were unaware that she had severe pneumonia, because all the symptoms of pain and fever are caused by the immune response, not the disease itself.

If you can find a way to get off the steriods, and still live a life, then do so!

[whisperit in reply to Ruthi]

I appreciate your honesty, Ruthi!

You make some good points about how far the steroids are going to be interfering with my levels, and test results.

My feeling is that these 'panic attacks' are exactly what you suggest and I am keen to cut my prednisilone down as quickly as I safely can. As you say, it's a tricky balancing act. My lungs and joints have improved since being on current meds, but my exhaustion/weakness and nausea/flushes have become so severe that I am practically housebound and incapable of doing anything that requires even the slightest effort.

Meanwhile, I hope things have improved for you.

Thanks for your thoughts.

[Ruthi in reply to whisperit]

Thanks, things are much better for me nowadays. The problem is that knowing nothing about thyroid, I just knew it was NOT in my mind! Once I stumbled on an article about hypothyroidism it didn't take all that long to get referred to the right doctor.

I had a similar thing recently - strange stools, which the gastroenterologist knew nothing about. It took six years on and off of googling until I stumbled on the right wording and Hey Presto! it looks like candida. I have just started a treatment programme!

I have NO faith in doctors nowadays!