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Menopause

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It might not be meno symptoms, or baby brain, or ...

13 replies

HallucinatingHilda · 28/03/2022 03:20

I wrote this and realised no one would ever read to the end, so I'm starting with a list of symptoms that have been attributed to the problem in my parathyroid glands (NOT thyroid).

Symptoms:
Extreme exhaustion
Foggy brain/wondering about dementia
Bone pain
Joint pain
Waking up "stiff" and
Feet hurt when you first start walking
Burning sensation patch on foot
Cracking headaches
Feeling incredibly weak/
drained
Restless sleep/ Insomnia/nightmares
Depression, anxiety, very bleak thoughts
Forgetfulness/ cognitive problems
Constipation
Nausea/ heartburn
Sweating at night

I didn't have them all at once, and it's only with hindsight that I can make the list. Some of it is very every day, but I've never had heartburn in my life, or constipation!

I'm a little spooked this week because I've started seeing "things" out of the corner of my eye.. I'm left wondering if there was a mouse, or a spider, or one of the kids and I just saw a corner of something moving, black and hazy. I have been reassured, oh that! That's just the hyperparathyroidism! Hallucinating...
Good news, the second the adenoma is removed, I will start to return to normal. So my the time I'm fully out of the anaesthetic, I should be "well" again.

Back to the beginning in case it's helpful.

I went through the menopause early, several years ago, and thought I had more or less got it all under control.

I started to get a long list of vague symptoms that kept being assigned to the menopause. I asked the GP if it's possible for HRT to just stop working, and she said it's probably just age related! Hmm

In her defence, she has always been amazing, and sorted out testosterone for me and all sorts.

But even more reason for me to thing this was my new normal, even though I'd been completely fine for a while.

Late last year, I was assessed for diabetes, as I was very thirsty, constantly peeing, and bad headaches.

Again, very fortunate that the doctor I saw was not convinced that it could be explained by the beginnings of t2 diabetes. I also told him everything else I'd been experiencing.

One of the blood tests that came back was for the hormones produced by the parathyroid glands.

It was out of range, too high. This doctor said it was probably worth watching, but unless I had osteoporosis or kidney stones, we could just watch and wait (can I say my second wtaf at this point?).

Given that I'd already had bone density issues for years, I thought I'd do some digging.
It turns out there's only really ever one reason for a high pth result, a benign tumour that causes your hormones to go haywire, and demands calcium from the bones goes into the blood.

Over the last 3 months I've finally had some scans (which only help about 70-80% of the time), and one did show a tumour. So I'm having surgery in a couple of weeks.

If you ask an endocrine surgeon they will always say it should come out. They would, they're all about the slice and dice. But now I know what I know, I would agree.

Oh, and apparently this first came up 6 years ago, but wasn't important Hmm because my calcium levels were fine. Except that it doesn't need to be high either. If you drink a lot of water, and don't consume a lot of calcium, it may not show up.

If you've got this far, thank you.

It's not very common, but I suspect it would be more common if it was checked iyswim.

If ANY of this rings a bell, whatever your age, ask for a blood test
Seriously, one blood test. They'll probably be testing iron etc anyway.

OP posts:
Vegandiva · 25/03/2023 09:48

So @HallucinatingHilda what happened? Did you get the surgery? Did it magically fix all the issues just like the endocrine surgeon promised?

Thank you for posting such a good summary and explanation 🙂I am sorry you have been having such a hard time of it and I do hope you are feeling better now 💐

HallucinatingHilda · 25/03/2023 21:35

@Vegandiva - I'll reply at some point, in middle of covid.. storm? Glad it was useful. Oh, yes, surgery made vast difference.

OP posts:
mmalinky · 25/03/2023 21:37

What is the blood test you ask for?

HallucinatingHilda · 25/03/2023 22:52

Pth - parathyroid levels.

A GP will probably tell you that it's OK if it's slightly out of range, but it's not.

Look up dr larian and parathyroid for a really deep dive.

OP posts:
Vegandiva · 26/03/2023 00:08

@HallucinatingHilda I hope the surgery made a vast difference in the positive direction! it just looks so scary when you look at a diagram of how the parathyroid seems to be lumped right in with the thyroid and all the things that could go wrong, good for you for being brave and going ahead with it 👏

HallucinatingHilda · 26/03/2023 04:21

I didn't have any choice. It has a dramatic impact on life expectancy.

OP posts:
HallucinatingHilda · 26/03/2023 04:28

One year post-op, and all the symptoms I had disappeared. My blood pressure is back to normal, my pre diabetes has finally started responding to treatment, etc etc.

It turned out I actually had to have 3 of my 4 parathyroid glands removed. They didn't have tumours on them, they'd actually become tumours themselves (hyperplasic). I also had to have my thymus removed. Instead of being 3 grains of rice, they were 3cm dia each.

Had to have genetic testing, thankfully all clear.

Most important, as always, is become your own advocate,

Second most important thing, get a surgeon who does these all the time. They need to check all 4 glands, but just any that show up on screening (my nuclear imaging showed one tiny possible tumour, they're frequently, falsely, negative).

Thirdly, but do this first, join apth group as soon as you get any weird bloods for calcium, phosphorus, or pth.

OP posts:
mmalinky · 26/03/2023 06:33

@HallucinatingHilda thank you

mrsbyers · 26/03/2023 07:46

Joining as my PTH level just came back at 13.5 vs 6.5 at top end of normal range , calcium and Vit D at the lower end of the normal range but that’s not unusual for me as I have Crohn’s and CKD - doc is referring me to my gastro team but I’m also going to alert kidney team , I’ve been feeling unwell for so long but always being sidelined by my other medical issues often having similar symptoms plus ongoing anxiety problems and grief related depression after losing my dad last year. I’ve never been so excited about bad news !

HallucinatingHilda · 26/03/2023 08:01

@mrsbyers - you actually made me snort, I remember that weird feeling!

I'm so glad you're having your kidneys looked at, but please don't be shut down by the doctors with a "oh let's just wait and see, because your kidneys seem fine" or something.

OP posts:
mrsbyers · 26/03/2023 08:48

HallucinatingHilda · 26/03/2023 08:01

@mrsbyers - you actually made me snort, I remember that weird feeling!

I'm so glad you're having your kidneys looked at, but please don't be shut down by the doctors with a "oh let's just wait and see, because your kidneys seem fine" or something.

thanks , I know from experience that being pushy is essential - I have been saying to my husband this last month that something is wrong but I couldn’t explain what I was feeling as it was different from usual kidney issues etc

mrsbyers · 31/03/2023 20:26

Update from me , had bloods taken again on weds this time focussed on U&E’s and my kidney function has dramatically dropped , calcium slightly lower than bottom of normal range , creatinine and phosphorus all high - seems to be secondary due to CKD and have had bloods taken again urgently today as they are worried my kidneys are failing. Still no response from gastro or renal but once these bloods are back will start pushing for some urgent treatment.

Vegandiva · 31/03/2023 23:40

Thank you for sharing your update @mrsbyers, sending you a virtual hug 💐. Good for you for pushing to get it sorted and I hope something can be done to help you asap!

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