Anyone had an Addison's test?

[clarella]

Just that really.

What to expect, what outcomes may be and if they consider secondary and tertiary Addison's possibilities?

[Mum2twoloves]

How are you feeling ? I know this is old but I have the exact same symptoms ….
was convinced I have pancreatic cancer ….. I’m 34 and had a baby 6 months ago. Keep loosing weight and My torso has sooo many aches and pains . Back pain and tummy pains .

[CatCushion]

DD had her blood tests this morning.

She only had one set of bloods taken and the ACTH test was put on ice and sent straight off to lab. But that was it! There was no injection, waiting and then more blood taken for testing!

Does that mean she won't have been tested for addisons and it will return with a false negative with no further action? I asked the young nurse about it as politely as I could, but English isn't her first language so it took a bit of repeating. We were in a side room so there was no one else to ask. I don't know if I can accept it if it just comes back as 'no further action' from the GP.

[clarella]

No I don't think I have cat but thanks for asking.

How is your daughter? I hope she had a good weekend?

I've been hypothyroid for many many years and it always affects my muscle strength when I have a dip. It kind of affects them either way I guess! I know this due to regular yoga pre child. It's also weight related as endo said, and I know for my weight 125/150 alternate days is right. The sertraline messed the way I process thyroxine so I'm all over the place!

I do understand the tests but also recognise that t3 is very variable during the day. I always test in the morning and take thyroxine after. I'm at my best if Tsh is around or just below 1 and t4 in upper range.

[CatCushion]

To answer your original question () did you have a 'U&E' test at some point? I was looking down the list of the ones DD will have (5 tubes, not including the extra addison's one) and looking them up and U&E is for the other adrenaline hormone and a much more routine test to run.

I would stay off patient.co.uk for now. I've never read that about loss of muscle in relation to hypothyroidism (addisons maybe because of severe weight loss, yes). Stick to the glossy NHS site!

Have you had your thyroid tested yet? There is the routine TSH test with is a 'blunt instrument' for discerning hypo/hyperthyroidism (this can be caused by the same autoimmune disease which can manifest as grave's (loss of weight, anxiety, sweating, fast speech and movement, exhaustion) or hashimoto's disease (difficulty keeping weight down, fatigue, malaise, cold hands and feet, sometimes loss of hair and achy joints and numbness of hands and feet and many more symptoms that may come and go. ) and there are a couple of others to test how your endocine system is functioning in relation to your thyroid.

Thyroid problems can also occcur during or soon after pregnancy (at any time, actually) and be temporary. So worth ruling in or out!

[clarella]

Nope after looking at the pernicious anaemia society website, mcv doesn't necessarily indicate PA or b12 issues.

Back to the gp i trot.

[clarella]

No just tingly numb ones

I'm just on the no mans land exclusion train at the moment.

I think pernicious anemia has been ruled out as the mvc is normal after talking to a gp friend.

The listed side affects of sertraline include a lot of muscular issues which compounded with muscle loss might easily cause all of this.

[CatCushion]

In my darkest moments I convinced myself I had lupus and worried myself into a dark corner. You would know, I think. They test for general auto-immune things ....

Do you have blue fingers etc?

[CatCushion]

*8 of the 20...

[CatCushion]

I am hypothyroid. :)
It is nowhere near as bad as addisons in that loads of people (mainly women) have it. A friend was at a conference and forgot her meds, she thought she would have to go home but 8 or the 20 women there had spare levothyroxine of her dose and willing to share! :)

I still get cold hands sometimes but I dont wake up with no feeling in my feet, stumbling to the loo! :) It really isn't so bad, and compared to DD my health was never that bad.

[CatCushion]

Crikey, am surprised they gave you the addison's test with normal K/Na result. I had to really twist DD's GP arm to let her have the test 18 months after her high K/low Na result, with worsening symptoms. Mind you, he also told me she had a raised temperature of 34.8 . Had to let that go for DD's sake, but if it were just me in there with him I'd have torn shreds off him. Have left DD in the care of her bf while I fly off to join DH for weekend. Hardest thing I've ever done.

[clarella]

From patient .co.uk


Underactive thyroid (hypothyroidism)
In this condition a shortage of thyroid hormone leads to generalised tiredness. In untreated hypothyroidismmuscle degeneration and wasting can develop. This can be severe and difficult to reverse. Hypothyroidism is a common condition, but it is usually picked up early, and treated before long-lasting muscle problems can result.



Can't help thinking it's all this. Not liking the irreversible bit.

[clarella]

Had calcium, was 2.34 (2.12-2.6) . I started asking about bones a year ago due to the aches and wrist pains they checked vit d and calcium too then I think. Vit d was 68.

Sodium was 142 (133-146)
Potassium was 4.6 (3.5-5.3)

So tbh it's not showing much!

I personally keep coming back to the ferritin and the b12/ pernicious anemia possibility and/ or the sertraline. In my darkest moments I worry about MS.

Thanks for listening though, I feel like I'm banging a head on a brick wall (except I don't have the energy!)

[fleurdelacourt]

how are your sodium and potassium levels? those are key Addison indicators.

[CatCushion]

Have you had a bone profile/ calcium check? Seems obvious with bfeeding.

[CatCushion]

Well too much iron is just as much a problem and can cause pain. Can be very dangerous, so wouldn't risk iron supplements if you've tested high. This is why the tests are so important! :)

I'm hypermobile too. It can cause all kinds of joint pains. I found I could self refer to the podiatrist for pain in my feet (and knees) when running and she said it was due to hypermobile ankles and pulling a muscle on one side, the putting pressure on other side. Now have orthotics and I don't do long runs. Really helped!

Treating thyroid can be tricky and it can go up and down with the stresses and strains of life, cycles, and all sorts. I take one occasional extra 25mcg if all my symptoms indicate it for a few days in a row and that helps.

[clarella]

Thank you so much fleur. I suspect there's no problem with my adrenals after the energy I had yesterday! Still lots of pain though. I wonder if it's the ACTH but I guess will have to wait to find out. The not feeling hungry is very odd for me though.

Cat - well apparently not according to tests- I have too many red blood cells (out of range upper) though the ferritin was 57 when tested. Although, when I was tested I'd felt a bit better and eaten buckets of red meat over the weekend.

What I have noticed it the rls gets worse with caffeine and I tried Epsom salts yesterday and felt a little better. But my magnesium was fine.

I keep questioning b12 and PA but the lab wouldn't do the b12 based on my rbc and Dr thinks they've checked the size though I'm actually not sure. Going to look at the results again. I'm going to ask for an intrinsic factor test as my aunt has PA.

PERSONALLY I feel that I lost so much muscle through physical and mental stress as well as not quite enough thyroxine due to the sertraline (I've found a study showing it reduced thyroxine and it's listed in the bmj thyroid patient book) that during recovery I've become transiently aneamic at times. Muscles need iron to regrow. ALSO sertraline will make rls worse. Low thyroid hormones affect the proximal muscles. I've also had so many infections this year plus a bad vomiting one. They will have used extra iron. PLUS I'm small and hypermobile.

I can't help thinking that lactation might be altering the rbc. I guess the lactation might also be making things harder, though I don't have periods back yet either so they'd be an extra out put too.

But drs keep looking blank when I say this.

At the same time, I don't really eat anything that isn't full of iron or folate or b12!!! I bought some ferriglobe or what ever it is yesterday.

I just want to feel normal again :(

I lost some sensation in my hands and feet after the rls got really bad and it feels like the tip of my tongue is numb too.

[CatCushion]

clarella...Oooh...resteless leg...are you anemic?

[fleurdelacourt]

OP - I have Addisons' - was diagnosed some years ago but the actual test itself was nothing compared to the symptoms. Was really very straightforward - an injection and then a blood test a while later IIRC.

FWIW I can see why they are testing you - your symptoms are v similar to mine. Brain Fog, muscle weakness, low blood pressure, nausea.

Addisons is such a tricky thing to diagnose - there are so many vague symptoms which could be indicative of so many different conditions. Each case is different and no patient would expect to have all the symptoms to the same extent. Also the symptoms can come and go.

Wish you all the best - feel free to PM me if you need any further insight.

[clarella]

I think it sounds worth ruling out with your daughter. Hope she gets some help with her illness. That's awful at 16.

I only hear if there's an issue; I'm thinking all is fine as no call yet and I was wide awake all night! (Slept from 10-12 then awake till 5 . Think I dosed till 7. My son had hourly nightmares following a fire brigade call out at his nursery but luckily I wasn't going to sleep anyhow!)

That was partly due to this restless leg syndrome issue I have in my whole body; it goes in cycles but I wonder if the extra cortisol gave me a boost.

I've been able to do a little run today and more stretching.

[CatCushion]

It must be a relief that it went well! I'm glad you hear back quickly. (I'm not sure what the procedure is for it here, I'll have to remember to check when we go for her test. I was told the results get sent off to some distant lab and it takes ages. I had a similar test which took over a month to come back positive, so we'll see.)

She's 16.. without going into her complete medical history, she's been unwell for some time, and should be getting better but symptoms seem to be getting worse lately. I'll admit, it was me pushing for the addison's test and the GP was reluctant at first, but since the clinical test she had last showed high potassium/low sodium, he finally agreed. I just wish it could have been him pushing for it, as I feel horrible for putting her though this test. We've got to know though, it could save her life! (She is well past the point of caring, so if I didn't push, it would be a matter of waiting for a crisis or other event to occur.)

[clarella]

Oh gosh how old is she? That's awful poor thing.

Thank you for thinking of me

I was fine. Not sure what I was supposed to feel but I very quickly noticed some of the odd pain feelings I have quickly went. I also had a cup of tea with sugar so it could have been that!

I got a taxi back but actually felt like I could have walked; it's probably 2 miles across the town moor. I used to love running across it.

So it maybe just gave me a much needed boost as midori found.

If there's an actual issue I think I hear back pretty quickly. If not I have to wait for a letter to see the endo in clinic.

[CatCushion]

Yeah..we had a scary day yesterday. We have to wait to test as doc wants to test for glandular fever (yes, possibility she has both) and there's no way I'm going to get her back there for that after the addisons tests (and U&E, FBC etc.) so we hang on.

Will be thinking of you tomorrow clarella and hope that you get some answers. How long to wait for results, do you know?

[clarella]

I'll let you know though what my outcome is in case it helps with your daughter. Poor thing, she sounds very ill x

[clarella]

I'll let you know though what my outcome is in case it helps with your daughter. Poor thing, she sounds very ill x

[clarella]

I'm sorry to hear about your daughter cat. I hope they find some answers for her soon.

The hospital have just told me the bfn say it's ok for diagnostic purposes when breastfeeding, I picked up elsewhere to abstain for a few hours afterwards. The consultant said to avoid for a few days of I was overly concerned. Not entirely sure what to think about that! What's easier - dealing with slightly hyper toddler or weaning cold turkey for 3 days, that'll get his own cortisol going for sure!!

He's two - it's night time comfort suckling/ mummy being too tired to do anything else! I'd give him some cows milk over expressed milk tbh. I think I'll maybe try expressing during the afternoon and dump it.