Synatchen test results

[Cheryl45]

My daughter Sophia who's 15 was diagnosed with Adrenal insufficiency in December 2013 she is currently on 30mg hydrocortisone daily . Not sure if she is primary or secondary AI .

Even though Sophia is on the hydrocortisone she isn't really improving prior to being diagnosed Sophia lost 4 stone in weight and even with the medication she hasn't put an ounce back on . The only thing that as improved is Sophia had severe back pain before diagnosis and this as improved .

Sophia also suffers from being extremely cold even after wrapping up with a few layers of clothing she just can't get warm ? Also she as started having spasms in her hands where her fingers just lock ?

Here is Sophia's synatchen test results perhaps someone could explain them too me ?

Baseline 184nmol rising to 339 nmol

ACTH 6ng/l

PTH 12 with calcium 2.40 and phosphate 1.20

Coeliac screen negative

Plasma renin activity 1.4 ng/ml/hour

Aldersterone < 110

Electrolytes normal

LHRH test - peak LH 80 peak FSH 15 oestradiol 93 TSH 2. Free T4 17

Cortisol profile varying between 110 and 181 between 9.15 and 15.15pm

Sophia is tired all time and feels drained . I have heard of another medication fludro cortisone and did mention it to her endo but he never prescribed it going off Sophia's tests results would she benefit from any other tests medication ?

Thanks for any help you can give us

Cheryl

[rosetrees]

You don't give the range for the aldosterone test, so I'm afraid I can't comment on whether it's low or not (I don't even recall what my own test was!)

If her adrenals don't work properly it is likely they are failing to produce anything at appropriate levels. I know I've read that taking cortisol can raise aldosterone, so might be worth retesting before supplementing?

Fwiw (I'm an adult not a child) my own belief, based on my personal experience, is that one needs wide ranging support to improve.

I take 17.5mg HC, but I also take 4 x Nutri Adrenal Extra (dessicated glandular, the adrenal equivalent of NDT) and 1 x AdrenoMax (a herbal support formula) along with 3g Vit C.

I also take a range of thyroid support. My guess would be that your daughter needs a wider range of support.

Her FT4 has room to rise, so it is essential that you get her FT3 measured. She may benefit from thyroid support. Remember, the thyroid and adrenals are part of the same feedback loop via the hypothalamus to the pituitary.

Also make sure has her Vit d, B12, iron, folate and ferritin measured to ensure all are well in range, not just bottom of range.

[Cheryl45 in reply to rosetrees]

Her vitamin d was low but not sure wat her results were ? Also don't know what her aldosterone range is this was all I got off her endo and told to give her HC

[rosetrees in reply to Cheryl45]

Time to get educated and informed. Always ask for print-outs of all results, with ranges. Research which tests she needs and don't be afraid to ask for them. Study the results. The clues are always in there somewhere.

Treating a child under 16 is a minefield, but information and knowledge are power.

There was, I think, a post on here a few days ago about a UK mother who is in prison for attempting to get the right treatment for her child, whilst her ex-husband appears to be out for revenge. (At least that was what Thierry Hertoghe said in his appeal)

Edit; To add - how is she dosing the HC? I somehow feel her endo would have little idea about an appropriate dosing regime. Buy the book "stop the thyroid madness" which has information on dosing for HC. She shouldn't be just taking it all at once. That isn't how our adrenals work.

[Juliet]

Hi Cheryl

Are you a member of Addison's disease self help group? There are a number of parents of teenage children on the forum there who might be able to advise. I recommend this site. addisons.org.uk/

I don't know where you are in the country, but they are having a meeting in London early November where you could talk to other patients/possibly parents.

None of the numbers posted refer to thyroid disease. You'd need to get TSH, FT3 and FT4 to see if she has thyroid disease.

In terms of your daughter's synacthen results, she had a low baseline and didn't produce much cortisol in response to ACTH stimulation.

Her ACTH was low which suggests she had secondary adrenal insufficiency. Although really she really needs an insulin tolerance test to check this for sure. Secondaries don't usually take fludrocortisone but some of them find they need it. Without the other test, you can't know for sure if she is secondary or not.

You might consider getting DHEA-s tested. DHEA is an androgen that we produce in our ovaries and adrenal glands. In adrenal insufficiency, DHEA can be low and some people find benefits from supplementation eg. mood, quality of life, muscle strength etc.. ncbi.nlm.nih.gov/pubmed/111...

Also, bear in mind that cortisol dosing does not replicate normal physiology. Usually when normal people wake up, they have their biggest peak of cortisol, whereas when your daughter wakes up she will probably be severely lacking until her pills start to kick in. The pills keep people alive but they don't replicate exactly what a normal person's adrenal glands would produce.

How does she take the 30mg? Did they test her growth hormone? If she has secondary, it can affect other hormones too. Maybe if you're not happy with the care she's getting, you could ask for a second opinion?

[Cheryl45]

Thanks for your reply Juliet we live in Manchester so london a bit far for us . We have joined the addisons society . In relation to her medication she takes 10mg 3 times daily . Also re other hormones she also didn't have any periods for over 12 months they have just returned endo put Sophia on contraceptive pill to get then started again and luckily they have my concern is now once she stops taking the contraceptive pill will they go again ? Not sure they tested her growth hormone but on that score she is quite tall at 5ft 9 and only 15 . With secondary AI would she have the pigmentation ? That corrected itself once she went on HC and has faded a lot

[Juliet in reply to Cheryl45]

Pigmentation is more likely a sign of primary (rather than secondary) as the pigmentation comes from very high levels of ACTH. After starting hydrocortisone, the tablets will suppress high levels of ACTH (which causes the pigmentation) so the pigmentation would fade. Nearly all primaries take fludrocortisone, so if it's the case that your daughter is primary, it may be that she would benefit from taking fludrocortisone. The main kind of symptoms that fludrocortisone works on is low blood pressure (particularly when standing up), dizziness, and in some respects energy.

I don't know much about paediatric dosing to be honest as I'm an adult, but lots of people take more of their hydrocortisone in the morning and less at night in order to mimic normal physiology, eg, I take 10mg,7.5mg, 5mg and 5mg with my last dose at about 6:30. However everyone is different.

Loss of periods is one of the symptoms of adrenal insufficiency in women so hopefully they should come back again.

If you ask on the ADSHG forum, some parents there might be able to recommend a paediatric endo who will do more to find out what would help your daughter. I've heard that that the doctor who wrote this is quite good (though not local to you). cahisus.co.uk/pdf/USING%20T...