Hyperparathyroid Forum
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Hyperparathyroid Forum
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Hyperparathyroid Forum
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New here March 18

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Post by Blackcurrant Wed Mar 14, 2018 1:16 pm

Sorry to see the forum is about to fold.  Sorry I feel too poorly to take it on!

I live near Addenbrookes in Cambridge and that's where I'm seen, transferring from Another Office down the corridor, for thyroid and adrenal considerations.  They can't fix that but maybe this will account for some of my symptoms, I thought.

One day last May I thought I was having an attack of atrial fibrillation, while casing after my grandson.  Went to A&E and it turned out to be elevated calcium.
PTH also elevated, inappropriately normal sometimes, but obviously wrong.  I pressed for investigations and have had the scintillation scan, CT scan and ultrasound which all pinpoint an enlarged gland.  Dexascan shows osteopenia. Not the familial holding of Ca.  Primary hyperparathyroidism confirmed. All this time later they are still chewing over whether to operate, which I want them to, and I've only just seen a letter which asks the parathyroid team to have a look at my results.  They've had some of thesethese data for months.

I have pain in my elbows and fingers, toes, and typing with gnawing 'toothache' in my pads is awful.
My fingernails have gone flat and and changed proportion.  I'm sure I don't recognise my thumb nails anymore.  Then one day I read about racquet nails, and although mine aren't bad, I think I'm in there somewhere.  I presume I'm dissolving and shrinking my fingertips. 
Then I broke a toe, just from stubbing it while trying to nudge something back inside a wardrobe.  Well really.
Anxiety been creeping up since 2013.  Depressed and worn out
GERD really bad.  I want that looking at again because it's painful.  Digestion generally yuck
Muscle pains, headaches
Already had much of  this with low thyroid, but I felt something changing around 2007.  Being labelled with chronic fatigue is never a good place from which to point up that something else might be wrong, especially with lots of differential diagnoses.  Like, they halve my thyroid dose and I immediately get a worsening of fibromyalgia symptoms.

Very depressed when consultant overrode the registrar who'd seen me to say let's not do surgery.  I'm 63, and to be told, well in 10 years we might realise we should have done it, was the crowning of my despair.

They said they'd have an internal chat and get me referred, but I discover 2 weeks later it's going the slow route by letter, which could take months.  Also to check my kidneys for calcium deposits.  That's no longer about diagnosis, that's about seeing if it's safe to wait.
What does it cost to go privately I'm wondering?
Too much for sure

I came looking for you guys today because I am overwhelmed
Sorry.  I'll get over myself soon I expect
Thank you


Posts : 2
Join date : 2018-03-14

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Post by Admin Wed Mar 14, 2018 5:56 pm

Hello Blackcurrant and welcome to the forum.

There has been very little activity, but the forum will not be disappearing any time soon, although Nelly and I are spending less time here than we did previously.

It sounds like you have two serious issues that both need proper attention.

For parathyroid surgery, I suggest that you have a look through this section: Hyperparathyroid Disease Questions, Advice and Discussion
In particular, search for posts that mention Addenbrooks as well as Fausto Palazzo who does Parathyroid surgery at Hammersmith Hospital (London) and is highly recommended on this forum.
Whoever you choose for surgery, it is recommended that you select a surgeon that has carried-out plenty of Parathyroid gland removals.
Further reading here: Parathyroid Surgeons and here: Useful website links

There are other forum members who are more knowledgeable that me on primary Hyperparathyroidism (I have secondary, Nelly has primary).

Both Nelly and I also have Hypothyroidism, so we (mostly me) have a lot to say about the diagnosis and treatment scandal that leave so many people with a miserable quality of life.

It sounds like you are suffering from both Hyperparathyroid and Hypothyroid symptoms.
You are likely to have a very hard time trying to convince a GP and Endo that you need to increase your replacement Thyroid hormone, so you may need to consider buying something on-line.
However, before this, I suggest some reading here: Thyroid Patients Advocacy (TPA) Forum and here: TPA Reference Section and here: Thyroid UK
The forum that is associated with Thyroid UK is on Healthunlocked. I suggest a degree of caution/filtering of some of the content on this forum as it is not always objective.

Chronic Fatigue Syndrome and Fibromyalgia were invented (in my opinion) following the introduction of the TSH blood test in the mid-1970s) which, frighteningly, became all that doctors cared about, whereas for the previous 80 years they were capable of recognising and treating Hypothyroid symptoms.
So-called 'normal' TSH ('normal' is a fallacy) resulted in many patients no longer being diagnosed or treated for Hypothyroidism, hence Chronic Fatigue Syndrome and Fibromyalgia to explain the symptoms.

As a minimum, you need Free T4 (FT4) and Free T3 (FT3) blood tests.  T3 is the active Thyroid hormone, so it is the most important.  Both FT4 and FT3 ideally need to be in the upper half of their respective reference ranges.  These tests will show the level of the two Thyroid hormones that are circulating in your blood. However, there is no blood test in the world that can measure how much of the active Thyroid hormone (T3) is being absorbed by your organs and it is insufficient absorption that gives you the Hypothyroid symptoms.
Effectively, low T3 absorption results in a winding-down of the body's organs (gradual organ failure).
Don't forget that the brain is also an organ and common symptoms of Hypothyroidism include memory-loss and depression.

Feel free to post more here.

Edwin (Admin)

Posts : 458
Join date : 2014-03-29
Age : 70
Location : Somerset, UK

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New here March 18 Empty thanks for the info

Post by Blackcurrant Wed Mar 14, 2018 7:40 pm

Hi again
My husband, bless him, has pawed, clicked or whatever, over the surgeons' data and their outcomes.  Fascinating.  I think, provided I can get them to book me in, that having positive and agreeing scans and imaging, and blood tests, as I do, means that I can have a targeted op with a high chance of a good result.  That has cheered me up a lot.

On the theme of hypothyroid + hyperparathyroidism, and being tempted to take natural thyroid again, we should all be aware that these natural preparations contain amounts of parathyroid gland, just because it gets harvested with the thyroid!  Just occurred to me not to even think of changing meds to natural thyroid while I still have my parathyroid tumour on board!


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