LUPUS UK
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Endocrinology referral

I went to my long awaited endo referral today - long awaited, but tbh I was not expecting much. I seem to have exhausted every clinician in the hospital now.

Anyway, the outcome was a confirmation that I have subclinical hypothyroidism (although my symptoms don't seem very "subclinical" to me). Watchful waiting is the only action there, which is obviously not much use.

He also referred me for a synacthen test to check adrenal functioning. Not looking forward to that.

I told him that I didn't approve of the Fibromyalgia diagnosis that my rheumy made. "OK, then," he said, "I can call it Chronic Fatigue instead." At least he had a sense of humour.

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The synacthen test is OK: they take a sample of blood at 9am for a baseline reading, give you an injection and take another blood sample at 9.30am. Sometimes they take a couple more at intervals. My mate had one, was set up in a lounger chair and a cannula inserted - one stick instead of reapeated ones. She'd taken a book as hers was to be a couple of hours. She remembers the first blood and injection. Next she knew they were waking her up to tell it was done, here's a cup of tea and you can go home. They'd kindly removed her book and specs for her! She says it is the best test she's ever had...

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That sounds good. But I am wary of these "stimulation" type tests after I was assured that the cardiac perfusion test was a breeze, only to find it took 2 days to recover. I really don't like the idea of simulating my adrenal output when I already have a resting heart rate of 95 etc. Asking for trouble! x

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Who on earth told you a cardiac perfusion test was a breeze? They'd obviously never been on the receiving end or they were knocked out for it! No - I've had worse things done to me but I won't be volunteering for a repeat any time soon!

The stimulation test doesn't really do much except kick the adrenals and say "make some cortisol so we can measure it" - don't think it has the same sort of effect on heart rate as the cardiac perfusion test. Some people claim they had a reaction when the synacthen was injected - but having worked in the NHS I can tell you there are people who will swear it hurts like hell even before the needle was within 3 inches of their arm...

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Can you come and hold me hand please? x

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Bet there'll be a nice friendly nurse - much nicer than me! Would if I were nearer mind...

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At least there is more "chronic fatigue is a real thing" now among doctors. Fibro is still a "hysterical women" thing.

Have you looked at the thyroid group on HU. A lot of them self treat, although it does seem like a trickier thing to do with autoimmune problems.

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yes, good thought, AnnNY. I can see myself going down the road to more self-treatment, albeit gingerly and with reluctance. Once the synacthen test is done, we have pretty much exhausted all major investigations. If there are then no new treatment options on offer, I may have to be more independent in this regard, as my current life is so restricted that it isn't tolerable. x

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Whisperit, please see my reply to AnnNY...

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It's a good piece of advice to look at the thyroid group. I learned a lot from them and asked my doctor to change from levothyroxine to NDT since I couldn't believe in the tests' results. For 20 years they have been always OK but my fatigue, brain fog, slow metabolism, etc persisted. From the members on thyroid community I learned that I could not be converting t4 into t3. This one takes nutrients to the cells. I found a doctor who knows a lot about this and he prescribed me ndt. From a compound pharmacy since here in PT it is not available. I feel much better. Less brain fog and fatigue. Plus through bloodwork he ordered I was deficient in vitamins B12 and D.My muscles stopped twiching since then. Hope this helps somehow Whisperi....

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Yes, thank you. I feel like I am reaching the point where I know better than the medics what is going on for me, so I may be asking more of the patient groups (and people like you!) to work out the best way forward. It's great to hear that you managed to find a way of getting through that bad time x

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Yes, i feel much better BUT still having lupus related symptoms, rib and muscle pain. Tomorrow I am seeing my rheumy and last blood &urin work results. And today a neurologist for possible central system involvement. No other organ involvement so far. Except my skin. Take care!

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That’s rubbish to feel there are no answers 🙁. Would he not treat even if ‘sub clinical’ based on your actual symptoms?? I presume thyroid results are like all our results where what is normal for each of us is so different and a slightly below or above result can cause one person lots of problems but remain asymptomatic in another?

Really want you to get some answers and get better! How about a different rheumy’s advice? They all seem to have different views/ ideas/ treatment too...

X

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Yes, I was hoping the endo would consider treating me with thyroxine or something on a trial basis, but he thinks the adrenal is more likely to be causing issues. The outcome of the synacthen test may suggest its worth changing my pred dose.

As you have spotted, I am now close to sticking pins into an effigy of my rheumy. I first told him I thought I was having adrenal and/or thyroid problems 18 months ago, explaining that I was waking 4-5 times every night shaking, sweating and retching. His response was to say that he was confident that it was a minor issue - or to quote him directly - "I'm not lying awake at night worrying about you" Oh, how we laughed. 18 months later, I am hardly any better. He delayed making this endo referral till after I had completed 6 months of "graded exercise" with a physio. Finally, he said that he is sure the pred dose I am now on (4mg) is too low to be doing anything much (but he still wants me to be on it!). I guess we all need a scapegoat - and my rheumy is certainly in the firing line! x

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Would have been tempted to reply, oh just my wife, son , daughter, friends etc are the ones lying in bed worrying then, x

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I actually said, "You're leaving that to me then" x

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and of course thyroid issues go hand in hand with Autoimmune conditions. I have had a ACTH test and it was ok. Just needed good rest afterwards. Good luck. x

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I’m not lying awake worrying about you?! Seriously?? That’s terrible when your whole life has been so reduced and he should be helping 🙁 Definitely find a new one.

Sounds very adrenal. What happens when you go up on the pred? I’ve reluctantly accepted I’ll probably be on pred for life but even if it cuts my life short by a few years (my rheumy laughed when I said that and said of course it won’t!) it’s worth it to have some quality of life now or doesn’t it improve things for you?

X

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If looks could kill, he'd have died in that moment! I have tried one-off extra doses of pred, and it seems to provoke exactly the same kind of shaking/sweating/nausea episodes that I get. So, like you say, my first thought was that the steroids are messing with my adrenals. But my other main symptom is extreme fatigue, so I'm kind of baffled by how that would work....so I am really hoping that this syncathen test will help unravel the mystery.

Thank you so much for your thoughts, Melba1, I am feeling a bit chirpier than I was when I first posted....

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He was lucky it was only a look 😡

Oh yes let’s hope so. There is absolutely nothing worse than the extreme fatigue. I’ve had a month of probably like you’ve felt for 18 months where I’ve been largely in bed and even getting to the loo leaves me dizzy, shaky and asleep for several hours 🙄 I’m in hospital now having a very thorough MOT because my rheumy (one of the good kind ones who does worry about his patients - even ringing between appointments to check how I am) is worried about my brain/ heart but I said to him it’s the fatigue that is the worst and most life changing. I’d accept some hallucinations, cognitive difficulties (ok extreme thickness 😬) palpitations etc if I could have some energy but I think even the good ones can’t realky understand how it feels for us and are very focused on organs.

Fingers crossed this test tells you something. Sometimes these autoimmune things do just go into spontaneous remission though too so please don’t lose hope of that (whilst keeping on searching for answers)

Xx

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thank you Melba1. I'm sending lots of good thoughts to you in hospital right now x

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I had this done several years ago. It was OK, only problem seemed to be taking the blood as my Raynauds was bad at the time and I think my veins had frozen up! I have Hyperthyroidism as well as Lupus and at the time of seeing the Endo Dr I was at my wit's end. It would seem that I was being given too much thyroxine which was giving me palpatations and caused me to loose over 2 stone. Good luck with everything. Xx

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thanks, MoyaP. That is good to know - hope things are more settled now x

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I feel your pain. Sometimes, getting through appointments, tests and meds in search of a diagnosis is so frustrating, like having to pass the krypton factor to prove you are ill. Consultants do a marvellous job, but there's no denying their condescension at times. When having breast reconstruction on one side mine asked, with a smirk, ' so, how big do you want to be?' Just to match the other side, I told him. When he asked how I felt, after the operation, I pointed to my left and said ' mother, wife, teacher' then to my right and said 'porn star' . Oh how his colleagues giggled and how how he blustered on. I had it removed at a later date. Sorry, this has nothing to do with your dilemma, but I thought it might make you giggle. Hope all goes well for you. Keep us posted.

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That is a brilliant comeback. Ever considered a career as a stand-up? (*stifles sudden flashback to certain endo questions*) x

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Funnily enough............Yes, but I wouldn't have the guts. I'll just stick with the writing.

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