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[Tempest]

Hello, ladies. Well today has been interesting (to put it mildly)!

I saw my endocrinologist today and we discussed my ongoing surgical menopause symptoms. I'm 3 years plus post op. abd have never really used that much HRT as I couldn't stabilise on it, but then was diagnosed with MS which explains a lot of my weirdness (or does it)?

When I have been having hot flushes recently, the adrenal surge beforehand is excruciating. We are talking close to vomiting and a headache so bad that I want to smash my head through the wall (if that makes any sense)! And feelings of wanting to climb out of skin with 'anxiety', except it's not anxiety - it's much more sickening than that. I'm also getting these intense surges 3 to 4 times a day without flushes, as well as recorded rapid rises in blood pressure and then hypotension. This has been recorded as I say at both A & E and on ambient 24 hour BP monitor. I've also previously been formally diagnosed with reactive hypoglycemia following fasting glucose tolerance, with no sign of diabetes or even pre diabetes.

The surges have been progressively getting really, really bad for the last couple of months. I've even blacked out with them.

So - today I have come home with a very large urine collection container for a 24hr catecholamine test. We are looking to see if I have a pheochromocytoma, which is rather rare but my endo. has suspicions.

If I do have it, I must be the unluckiest blinkin' person on the planet as none of this stuff was happening before I had my ovaries removed. I truly believe that this surgery has been like a wrecking ball to my health, and I wish with all my heart that i'd never had it done!

If it's negative, then I must have the worst meno. symptoms known to womankind suddenly showing up over 3 years post op. and therefore post meno. In which case whomever I am seeing in just under 2 weeks time is going to have a big job on their hands sorting out an HRT to hopefully offer some relief (and it will take months to adjust).

Since this surgery, I have 'inherited' a neurologist, cardiologist (to monitor my heart aneurysm found last year, but this is congenital), endocrinologist and two gynaecologists. It sucks. 4 years ago? None of this stuff! Coincidence? Hmmmm.....one has to ask!

Sorry to have a moan, but I just had to offload a bit.

I'll let you know how I get on babysitting my giant pee container tomorrow. Who knew middle age (and menopause) could be so much fun?? xxxx

[CLKD]

If you knew what you were lacking it could be adjusted but hormones rise and dip all the while which makes stabilisation difficult.

Input and output?  Noting what you've eaten/drunk prior to each pee? 

How is your diet over-all?  Do you graze, i.e. eat little and often?  I had that awful nausea - one day I had to ask in the local chemist to use their loo, she began to direct me to the public ones but there wasn't time!  Fortunately I wasn't ill but I felt AWFUL.  Now when my body is hungry I get the same feelings  so try to eat B4 my body requires nourishment.

Dried fruits and nuts; 'dextrose' tablets; bananas; dried biscuits.  We may have had this conversation ....... a good breakfast for me is important.

Is the intense headache due to blood pressure?  I wonder how long it takes to ease? 

pheochromocytoma - now going to look up this Very Long Word and am Very Pleased that I no longer do short-hand ;-)

[CLKD]

Crikey!

 

[Daisydot]

That's a complete bummer for you tempest you must have some resilience that's all I can say,you come across as so well grounded and seem to cope so well so I've nothing but hope and admiration for you.please god let things ease up for you,I swear I've turned into a holy willie I've never prayed so much in my life lol) but you know what I mean I wish you only good things in life.xx

[dangermouse]

Sorry to hear you're still suffering.

The hypoglycaemia is a big clue and I have been learning all about long term effects of keeping blood sugar too low. Sugar will lower cortisol, it will immediately bring it down, so as CLKD often advises, grab some quick acting sugar (e.g. glucose drink or fruit juice) next time you feel the panic rising to see if that will, at least for now, lower the anxiety.

Good that your endo is checking your adrenals, they seem to do this more in other countries than the U.K.

[Tempest]

Thank you so much, girls!

To be honest, the endocrinologist I see is a Prof. and at the very top of his game and I have been working with his dietician for the last year on the reactive hypoglycemia.

The clue is the 'reactive' bit. The very last thing you need to do is 'spike' with sugar as the other side of that is an unavoidable even lower compensatory drop. So the key is to keep sugars stable. I've been a bit of a martyr to this ever since my diagnosis even though I do say so myself and Prof. says I've been managing it well. 👍😊

I have to avoid simple carbs and sugars and eat every 3 - 4 hours (at first it was in the night too - I hated that)! I actually had 2 weeks in hospital last year to get things stabilised it was that bad, and had the nurse jabbing me in the night for a finger prick test every few hours and then getting me to eat my snacks. Not fun...So I'm pretty strict with it all now. Prof's happy that the adrenaline surge stuff isn't coming from blood sugar drops.

I'm getting to the point now of thinking how very much i'd like to leave all this crap behind and run through a field of buttercups without a care, instead of haunting hospital departments like a saddy. But I guess we'd all like that, right? (The running through buttercups bit, or whatever floats your boat).

Keep offering up the prayers to that Higher Being, Daisydot - I think the world in general needs it! Thank you so much each for your kind words xxxx

[dangermouse]

Well that's thorough what they did so you can then rule low blood sugar out.

I agree about not spiking sugar levels anyway but can be good in an emergency (though not for you!). I actually blend carrots and sea salt into fresh orange juice (the Innocent with the bits) and that keeps it stable for longer.

Hope the urine test gets to the root of the problem for you.

[Tempest]

Thanks, DM!

Hey! You're taking a bit of an adrenal cocktail there, do you know that? Orange juice and celtic sea salt - mighty good for the adrenals. And I'm sure the carrots can't hurt either. xxxx

[Daisydot]

As the great man used to say Tempest (Dave Allen) goodnight and may your god go with you lol xx

[dangermouse]

Ah, well that makes sense as I've learnt a lot from the endocrinologist Ray Peat (his articles and forum) as he is all about the thyroid and adrenals.

The carrots are the only vegetable he suggests having raw and it can boost thyroid and replenish gut bacteria. My digestion has been great with adding this drink and lots of coconut oil to my diet.

They are very much about healing the metabolism for long term low carbers / intermittent fasters like myself.

[Tempest]

Ooh, loved Dave Daisydot!! Thank you!

Love Ray Peat too, DM - that guy imparts so much wisdom.I did hear that too much coconut oil too quickly can make things a bit 'runny' though - but it IS great for you!

I was just getting my request form out of the bag with giant pee container ready for the morning and noticed Prof. had requested HIAA testing too. So I googled it (as you do) abd it seems this is for carcinoids. Thorough this guy, isn't he?

Anyway - off to bed to stare at rhe dead spider on the ceiling again. You'd think after over 3 years I would have got rid of the blighter by now, but then i'd have nothing to stare at......(I DO do housework btw, but can't bring myself to remove him. Just sayin'). Night, all! xxxx

[Dotty]

Hi Tempest
I sympathise with you as I had the 24hr urine test and googled it too! I had it as my docs wouldn't believe that my severe symptoms were due to menopause (3 years post meno). Thankfully my results were negative but I had to wait over a month for them!

[Tempest]

Thank you so much, Dotty. I'm so glad your test result was negative, and am hoping for the same.

Tell me - did you have similar symptoms, and did HRT solve them for you? xxxx

[Dotty]

Hi Tempest
My symptoms were total exhaustion, terrible nausea, no appetite, insomnia, hot flushes, cold flushes, heart palpitations , spaced out feeling, anxiety, paranoia, crying..... I felt dreadful and I couldn't do anything except crawl out of bed. Docs didn't believe my symptoms were menopause so I had to undergo numerous tests ..... all of which were negative thankfully.

Hrt tablets did nothing for me. Oestrogel (4 pumps), utrogestan and testosterone have given me my life back .

[Tempest]

Oh bless you, Dotty! Sounds a lot like me lately - I thought some of mine was an MS flare. 

I'm so glad you found a regime that works - I think i'll be requesting the Estrogel again as I got on ok with it until I switched to Oestrodose and then things went horribly wrong. I posted about it a long time ago on here and now know that was the issue (got a rash from it too - for ages I thought it was the same stuff so didn't put 2 and 2 togethet at the time)!

I just hope the supply issues with Estrogel aren't a nightmare. Might consider Sandrena, if so! xxxx