Adrenals and thyroid and stuff

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Yesterday I had a brief telephone conversation with Prof Lolin, my endocrinologist.

She tells me I have chronically low BP.  Also low resting aldosterone, although it rises slowly to ‘normal’ on standing (I don’t have the figures yet, or the reference ranges).  And I have chronically low sodium, I am salt-depleted and my kidneys are retaining virtually all my salt.

The top-notch medical advice is to take more salt with it!  Specifically, have 2 teaspoons of Swiss Bouillon in hot water every day.  Very pleasant, rather like very weak, vegetarian Bovril!

Already, I think my head feels clearer.  I also seem more relaxed, heart is not racing, and I slept better last night.

I see that symptoms of low sodium can include headache, confusion/altered mental state, seizures, decreased consciousness/coma, restlessness, irritability, muscle spasms/cramps, weakness, tiredness, nausea and vomiting.  That would cover an awful lot of my symptoms, particularly the decreased consciousness, fatigue, weakness, restlessness and irritability.  Good, I hope it’s as simple as some Swiss Bouillon every day!

I have to go back for a repeat Lolinogram (24hr urine test for salt/water) in a month.

Quite how this all relates to thryoid and other issues I don’t yet know.

But I also discover that my most recent thyroid profile showed TSH 0.8, FT3 3.2 and FT4 22.3.  That seems to suggest to me that, while my TSH is ‘normal’, I’m not converting T4 to T3 very well.  I think this needs further investigation and meds adjustment.  Maybe I need some T3 as well, or instead. Or to switch to Armour thyroid.  Or maybe some of my vitamins and minerals are out of whack.  Prof Lolin will also look into all this for me.  Though I fully expect her approach to be entirely orthodox, so I may not get as far as I’d like to with her and may need to seek some additional ‘complementary’ input.

Dentists again

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I think I’ve figured out what’s been making me ill. My dentist! Yes, the delicious sexy Spanish one. Oh no!

When I checked back through my medical diary I could see that every time I’ve had a dental procedure or surgery this year, about 3 days later I’ve started recording aching, fatigue, joint and muscle pain. Feeling pretty much like flu, without the fever. For about a month. That can’t be a coincidence.

I reckon that the stress/trauma/injury of the procedures spark off an autoimmune flare. And I’m guessing the best response is a combination of steroids, painkillers, as much rest as Life will allow(!), and patience!

My naturopath says she often sees this in people with autoimmune conditions.  Some react to the materials used in implants as well.  Although, in my case, I had the same reaction when Jose was just replacing a temporary crown – so before any ‘alien’ materials were inserted.  Could on occasion I suppose be the anaesthetic, but then I didn’t have any anaesthetic at the last procedure I had on 26/9, which was installation of the permanent crown, so isn’t just that either.

Just thought I’d share in case this is useful to others. Also, I feel the dental profession needs to be made more aware of the stress impact of dental work on autoimmune patients.

Adrenal mysteries

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Ooooer, it’s getting even more ‘interesting’ around here.

Right, are you sitting comfortably?  Then I’ll begin…

On Thursday 18th July I fronted up to the hospital for a short synacthen test – to test adrenal function.  First thing consultant asked me when she sat down was ‘Do you have allergies’?  DUH!  I could even see my referral letter in her hand from my chest consultant stating, amongst other things, ‘likely ABPA’ (allergic bronchopulmonary aspergillosis).  So I kinda think the clue’s in the term?  Had she even read the damn letter?  So then she said she didn’t want to do the test because it can be dangerous for people with allergies.  Er, so why am I here then???  Grrrrr.

But she did do a cortisol and various other blood tests.  She said that if the cortisol level came back normal, then that would prove that my adrenals are functioning fine.  But what about, I asked, for instance, DHEA?  Dehydroepiandrosterone  is an important steroid produced in the adrenals, gonads and brain, and needs to be in balance with cortisol.  I also asked about aldosterone, another adrenal hormone.

I had taken with me the results of a recent salivary adrenal stress profile that showed poor adrenal function overall, and with very low DHEA.  Prof Lolin seemed to poo-poo all that.

I had a follow-up consult with her the following Tuesday when, rather to my surprise, she said she would test for DHEA and do a renin/aldosterone test and wants me to do a ‘lolinogram’ (obviously devised by herself) – 24-hour urine collection with blood test to check fluid/electrolyte levels.  She seems convinced I might just need to up my salt and water intake.  Hmmmm, we’ll see.

The suspicion is I might have – wait for it! – hyperreninaemic hypoaldosteronism.  In other words, too much renin, reducing aldosterone, which is needed to regulate sodium, potassium and blood pressure.  I do have chronically low BP (as many of us with APS/Sjogren’s do) and low sodium with high potassium.  Plus an awful lot of the symptoms fit.  Oh, I’m also using a home BP machine to take readings several times a day.  Hang on – must do one now.  (105/65, pulse 84.  That’s high for me, but then I had just done a ventolin/hypertonic inhalation and that can make you a bit hyper for a while.)

Interestingly, Prof Lolin herself has hyperreninaemic hypoaldosteronism.  She asked me what I would plan to do if I do also have this.  (You’re asking ME?)  Because she said treating with fludrocortisone (florinef) (our old cat was on this!) could have negative issues for me.  She went into great detail about why and I fully understood at the time but of course now can’t remember a damn thing! Though I think it was something to do with beta blockers.  Which is weird, cos, with low BP I’m hardly ever likely to need beta blockers.  And in any case, I already know they make me very ill.  Anyhow, I’ll ask again – and take a cassette recorder with me next time!  Prof Lolin says she just watches her salt/water levels and has learned to live with it – but maybe that’s easy to say/do if you haven’t also got autoimmune conditions to cope with.

One issue is that I’d only been off steroids for 2 days when the cortisol test was done and there is some debate about whether that’s long enough to ensure an accurate adrenal assessment.  I shall await all the results and if I’m not getting satisfactory answers I may well go to my naturopathic doctor and see what she suggests.  Tests won’t be done till mid-September anyway!

Oh, and btw, am back on a low level of steroids (only 3mg/day) because it seemed prudent following my bronchoscopy on 24th and because, in any case, I find I feel considerably better on them, dammit.  Will review following Brompton tests at the end of August.

Over and out :-)

Triple steroids for the O2!

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So I was pootling along, doing reasonably OK, reducing steroids gradually.  Very gradually!  I was down to 3mg/day.  Then alternating with 2.5mg/day.

Then I had my dental implant.  And bam!  Down I went for the next couple of weeks.  All the usual suspects – terrible fatigue, loose bowels, muscles – well, what muscles?!  Was struggling to get up the stairs, certainly in one go, would have to stop a couple of times on the way up.  No brain, breathless.  Hadn’t felt so knackered or feeble for about 10 years.

This was happening a couple of weeks before a date to perform at the O2 with all my lovely Rock Choir mates.  But I turned up to rehearsal two days beforehand and felt so wretched I thought I was going to pass out and left early. Everyone was saying how pale I looked.

So I thought, dammit, I’m not going to let these little buggers (steroids, that is) stop me from enjoying the O2.  How often does a girl get to play the O2 for gawd’s sake?  So I trebled my steroids – from 3mg to 10mg for the day before, then 8.5 ton the day itself, 7mg last Sunday, 5mg on Monday, 4mg yesterday and 3mg today.  And of course I now feel absolutely shit.

Not helped by going out all day yesterday to the Cutty Sark and a riverside lunch with partner.  So I used up a lot of (non-existent!) energy and didn’t get my regulation afternoon zzzzz.  But hey, again, it was great and Life has to go on!

It’s only going to get worse over the next couple of weeks too.  I have to be completely off the steroids next Monday in readiness for an adrenal function test on Thursday.  hat’s going to be a stretch and I know I’m going too fast for comfort.  But it has to be done.  Any level of steroids in the system will invalidate the results.  And I don’t want to delay the test because I want to get to the bottom of what’s going on, including why I’m having so much trouble getting off steroids (when taken at the advisory pace).  Also, I have pretty much back-to-back investigations, interventions, procedures, etc. of various types booked over the next couple of months, so if I postpone the synacthen test now, gawd knows when the next chance to do it will be.  By all accounts, the endocrinologist, is a good one, high up in her field, so I’m looking forward to the appointment – as you do!

But at least I made it to the O2 and had a fabbo time!  If anyone’s interested in getting a feel for what we were all up to, try http://www.youtube.com/watch?v=Jn1FU5529Ss&feature=share&list=PLNqtvGYxBMPyiBVtJ7ci1hXKKwX10z8GV.

I shall return.

 

 

Dental implant

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Had my dental implant this Monday.  UR1, so right at the front of my mouth.  My previous crown broke off one Sunday afternoon (typical! – these things never happen during working hours, do they?) so something had to be done and the alternatives were a denture (yuk!) or a bridge.  The bridge would have been cheaper, but would have required work on three otherwise healthy teeth, probably wouldn’t have looked as good, could feel odd, and probably wouldn’t last as long.  So I went down the implant route.

I was terrified!  Normally the dentist doesn’t phase me – I get far more anxious over a trip to a doctor (usually because I anticipate, usually correctly, a fight over something or another).  But the thought of a titanium bolt being screwed into my jaw was just a bit of a worry.  Despite assurances that it would be much less uncomfortable than a filling. Yeah, right.

But it was!  Piece of you-know-what.  Just a few minutes of gentle, quiet pushing and shoving, with a little vibration, and that was it.  Job jobbed.  Though that was then followed by about an hour and a half of faffing about, fashioning and fitting the temporary crown.  Now the bone has to heal for 2-3 months before the permanent abutment (post) and crown can be fitted.

I then feared horrendous after-effects with swelling, bruising, pain, infection, exhaustion.  But nope, diddly squat really.  OK, I took 4 paracetamol in the first 12 hours or so, and I do feel sledgehammered.  But then it doesn’t take much to do that to me anyway.  And particularly at present with numerous other issues going on.  Worst problem was the bloody antibiotics I was supposed to take – 500mg amoxycillin 3/day for 5 days.  I took 4 250mgs, got raging diarrhoea and a migraine – as I’d said I would – and gave that up as a bad job.  Lord knows how they’re ever going to be able to deliver antibiotics to me in future, I just can’t tolerate them.  Perhaps IV delivery might help.  But can you imagine the ‘fun’ I’d have trying to persuade the medics to do that?!

But the tooth has been almost painless.  No obvious swelling or bruising.  There was a teensy bit of blood oozing around the gum line for a couple of days but that seems to have stopped now (even with taking aspirin for the APS).  So I’m hoping for a gold star when I go back to see the delicious Jose on Monday morning.  He’d even given me his mobile number and said I could phone any time, even 3am.  And he called me on Wednesday to see how I was getting on.  Not doing anything to quell my raging senile crush!!!

Thank heaven, though, that I didn’t let him give me the 1g of amoxycillin as a precaution immediately before treatment!  I would have been a mess, considering how I reacted to that dose over 24 hours.  Apparently it’s mandatory in Spain before oral surgery.  Not for me, Pal!!!

And there went another £1000.  Poof.  I’m now up to about £2200, and heading for a final bill around £2700.  And that’s still saved me about £1000 over what my previous dentist would have charged.  Jose was offering a cut-price deal on implants while he gets established here in the UK, having been headhunted from Spain on the strength of his implantology expertise.  I can certainly recommend him.  And he’s not hard on the eyes, either!!!

Adrenals

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Today I ordered an adrenal stress profile kit from Genova UK (£75).  If it’s like others I’ve done in the past, it’ll be a 24-hour salivary test that I do at home, then just send off the spit (always assuming I can produce enough that is – bit of a challenge with Sjogrens!), then the results get sent to my naturopathic doctor, Franziska.

The random cortisol test I had done about 6 weeks ago showed ‘normal-to-high’ but since that’s (a) a snapshot, (b) only measures one adrenal output and (c) I’m on steroids – that doesn’t really tell us very much.  Dr Graves has now referred me to Professor Lolin, the endocrinologist (so yet another ‘ology’ to add to my large and growing collection!) but I don’t know how long an appointment will take to come through, and I also don’t entirely trust the orthodox medics to either analyse or treat adrenal function thoroughly.

Previous salivary profiles I’ve done in the past have always shown abnormalities and I’m becoming more and more convinced that the steroids have murdered my already dodgy adrenals.  So I need to look into this.  May be barking very loudly up a wrong tree, of course.  I’m just desperate to find some explanations for the crap, and very weird way I’m feeling.

Yesterday, for instance, I woke up feeling awful. Gasping for breath, knackered, wondered if I’d even make it out of bed, let alone work.  But by mid-morning I was feeling OK.  OK, for me, that is.  Today, I woke up feeling much better, thought, ‘oh that’s good, at least I feel better than yesterday’.  Wrong!  Have felt increasingly crap all day.  But in a very difficult-to-define way.  Sort of woozy, out of it, knackered, aching muscles.  But then able (just) to do the shopping, then lightly clean the house and prepare tea for a friend coming round tonight.  Uh?  Seem to feel slightly better on the move.  Oxygen to the brain?  Brain?  What brain?????

Steroids withdrawal is a bitch!

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I swear I’ll swing for anyone who ever tries to get me on steroids again as long as I live!

OK, I know you’re supposed to reduce slowly and I probably did race ahead a bit.  Well, maybe a lot!  As I went down from 7mg/day to 3.5mg/day in about a month.  Whereas Menzies Gow (chest consultant at the Brompton) told me to come down 1mg/month.  But I was waiting till I felt stable on a particular level before going down to the next one.  And I thought I was doing OK until I went down from 3mg/day to 2.5mg/day – so a teensy weensy little reduction.  But bam!  Felt absolutely crap!  Depressed.  Knackered.  Arm and thigh muscles aching like mad, muscles screaming by half way up the stairs, breathless, woozy.  Gawd.

Wasn’t helped by a really long, tiring day on Sunday, singing with the choir.  However lovely that was.  And it was hot and I’d gone without sunscreen (duh) so I got burned.  And that made me wonder again if I have or am developing lupus, because sunlight is a major trigger for lupus and could at least partially explain why I felt so awful for the first few days of this week.  Plus, as well as a generally pink face, I had prominent, round, bright red blotchy patches over my cheeks (like a little painted Russian Doll) and nose, like the lupus malar rash.  Don’t have blood markers for it as far as I know, but that doesn’t necessarily signify anything, as we know.  So must discuss/investigate at some point.

Meanwhile, I must try to be more patient about steroid withdrawal.  Never my strong point, patience!

Brompton

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Absolutely knackeroonied today after yesterday up at the Brompton.  Had to wait over 2 hours and fight the system somewhat to ensure I could see Dr Menzies-Gow and no one else.  But he was good once I got in there.

Upshot is he’s not convinced by the tentative ABPA diagnosis.  His comment was along the lines that ‘I see they’ve all been running around in circles tying themselves up in knots and deciding this is ABPA’.  He says my CT scans don’t fit and that there has been no sign of aspergillus spores.  I’m not sure that’s entirely correct but, in any case, he wants me to be admitted for a couple of days to run a whole battery of repeat and new tests.  Including skin allergy tests and a full-scale pulmonary function test on a treadmill, heart investigations, etc.  I think he’s suspecting there may be more of an APS connection than has been picked up so far.  And that tallies with the feeling I’ve had for some time that I would benefit from more anticoagulation. Indeed, the 2-week Clexane trial did seem to improve symptoms, particularly brain function and things like balance – but I couldn’t tolerate the awful bruising or the hassle of daily 10-min injections.  I told M-G I’m hoping I can hold out till Xarelto/Pradaxa are available.  And maybe something naturopathic like nattokinase could tide me over in the meantime.

Good news is, because he’s far from convinced that I have ABPA, I can come off the steroids.  Yeay!  Perhaps I never really needed to be on the buggers in the first place – grrrr.  Though I did feel spectacular for the first couple of weeks on mega-doses.  So I think maybe a short sharp shock of them initially was probably helpful.

He’s not sure either if I need another bronchoscopy.  But that’s in abeyance till we know a bit more about other stuff.

Bad news is it’ll be about 8 weeks before the tests and another 8 weeks after that till follow-up.  So, oh goodee, that means I have to carry on feeling crap for another 2-4 months.  And that’s assuming we get any answers in that time.

Also, coming off the steroids is going to be as awful as being on them.  Supposed to be coming down at 1mg/month – but I bet I don’t go that slow!  I’ll see how I feel.

Of course, I’ve come away thinking I probably should have asked more questions, checked a few things out – like am I dehydrated at present, as I suspect, and if so, why?  But I think we both agreed there wasn’t much point asking many more questions till we have some test results.

Gave several pints of blood, as usual.  Wonder I’ve got any left!

At least I feel, as with Jennifer Graves, that I’m in good hands with someone who cares, is approachable, treats you like an adult, and is taking me seriously.  And also that he might be the first to really try to join up all the various dots.

To be continued….

What if you don’t have/want a GP?

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Not for the first time, this morning I found myself wondering how the health system in this country would function if you chose not to have a GP.  How would you get a referral to a consultant?  And if, as I suspect, that’s not possible without a GP referral, what happens then?  Can you be required by law to have a GP, even if you don’t want one?  Wouldn’t that be a breach of civil liberties?

I don’t even really see how it can come down to saying that, if you don’t want a GP but want to see a consultant, you could just pay to do that.  Of course, you’d have trouble with any health insurance scheme because they always insist you go through the GP gatekeeping system before authorising claims when seeing consultants.  And I think most consultants would be extremely reluctant to see even private, self-funding patients, without a GP referral.

Now, is it just me, or does this seem just plain wrong?

I very rarely find my GP useful for anything other than either referring me to a consultant or writing scrips for drugs prescribed by said consultants. In fact, I more often than not find GPs to be a hindrance rather than a help (even though my own, regular, GP is one of the ‘good guys’).   So why do I have to bother with a GP at all?!?

 

Clexane progress?

About 10 days ago I realised I could just squeeze in a suspended clexane trial.  I figured I was stable on 7.5mg prednisolone/day (wrong – but I didn’t know that at the time!), that I certainly wasn’t going to be having my planned tooth implant any time soon, or any other invasive procedures, so I could try the clexane for a couple of weeks at least and see if it made any difference.

Well, I do think it makes a difference.  I’m less foggy, less ‘handbag in the fridge’ syndrome, better memory, better typing, better balance, greater clarity, better with words, both written and oral, etc.  Not perfect but better – perhaps 30-40%, maybe even 50% at a push.  And this is at 4,000IU/day whereas I think the regular dosage would be 10,000IU/day, so I should reasonably expect perhaps an 80-90% improvement at that level.  Therefore improving to ‘only’ normal senile mental functioning levels!!

However, I just can’t deal with the bruising.  It’s unsightly, ugly, ugh.  Not acceptable.  Totally non-negotiable.  And this is even if I take great care to inject very slowly, taking at least 5 minutes with each jab, icing the area before and afterwards.  Nope – still bruises.  My belly is starting look like a pin-cushion.  This morning, on suggestion, I tried the fleshy area at the top of my right thigh.  Even worse!  A huge blue bruise was forming even before I’d finished the injection – aaarrrrgggh.  This won’t do.

But what are the alternatives? Warfarin is the obvious one. On some levels I’m OK with that but it has annoying restrictions: diet, weekly (initially) INR blood tests, having to take the drug at the same time each day, etc.  I was OK with this, once established on the drug, when I first took it after my first PE (pulmonary embolism) in 1989 but had trouble with it when I tried it again 3 or 4 years back.  I kept bleeding all over the place – gushing nosebleeds, bleeding gums when I brushed my teeth, massive easy bruising, etc. – even while the surgery was gleefully insisting that I should up my level of warfarin because I hadn’t reached the stipulated INR level.  In the end, in desperation, I called the London Lupus Centre and spoke to Professor Hughes himself, and he told me to stop it.

Maybe the problem now is that I also take vit E and EPA, both of which help thin blood, whereas I almost certainly wasn’t taking them back in 1989.  But I don’t want to stop taking them – they have enormous benefits in themselves.  Perhaps I could persuade the powers-that-be to set a lower INR for me to achieve adequate anti-coagulation – more like 1.5 than the 3.0-4.0 usually set for APS patients.

At present, I’m also taking 2x75mg aspirin/day and was advised by my consultant to stay at that level while trialling clexane.  Which makes sense as otherwise we wouldn’t be able to tell what was inducing any changes.  However, I think that makes me bleed too much, so I’ve cut out the aspirin while I continue with the clexane for a few more days and I’ll see if that makes any difference.  I certainy wouldn’t be taking aspirin as well as the clexane, if that was prescribed long-term.

But I don’t think clexane is going to work for me.  Some people on the forums clearly think I’m being silly, that a few bruises are a small price to pay for feeling better, but these things are all very personal and, for me, the price is just too high.

I asked Professor Khamashta, my rheumy, if there was some other way to test whether higher anti-coagulation would be beneficial, rather than clexane.  He suggested upping my aspirin to 4/day, i.e. 300mg in total.  However, this provoked a forum controversy because some people had been told by their consultants that aspirin only affects platelets up to 150mg/day and that doses above that level would have no benefit.  Yet here was Prof K, also a leading expert in the field, telling me to increase to 300mg.  Uh?  I wouldn’t want to use that level of aspirin long-term because of stomach damage but could do so for a month or so to test the effects.

There is also Plavix (clopidogrel) but I think I tried that before and couldn’t get on with it, though I can’t now remember why!

It’s a challenge.  To put it mildly.  I’m really thoroughly fed up, truth be told, with all these health issues this year.  Takes up so much time, energy and, frequently, money.  I have to hope the Brompton appointment next month starts a fruitful process of at least establishing  exactly what’s been going on with my lungs, what the state of play with them is now, and what to do about it.  I’m sure that it’s only when that issue is resolved that I’ll be able to make any progress on a broader scale.  And then, hopefully, return to plodding along in a fairly stable state.

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