Any thoughts please

[ScubaBlue]

Hello. After a 5 day stint in hospital for hypercalcemia and kidney stones and a whole host of xrays and scans which have shown nodules on my thyroid, I've now been referred to an endocrine surgeon. Any thoughts on why they've made that referral. I'm new to this and totally confused because of lack a lack of information from my endocrinologist. Many thanks

[SlowDragon Administrator]

welcome to the forum

Calcium levels are controlled by your parathyroid glands

Nothing to do with thyroid…..apart from the fact they are found within the thyroid

mayoclinic.org/diseases-con...

Everything you need to know about parathyroid

parathyroid.com

Kidney stones

parathyroid.com/kidney-ston...

Have you been taking any vitamin D supplements

High dose vitamin D can result in high calcium levels

[ScubaBlue in reply to SlowDragon]

Thanks so much for your reply and really useful links. I am on vitamin d supplements (1000iu) as I've recently had a deficiency. It has been suggested I have primary hyperparathyroidism but a recent scan didn't show anything on my parathyroid glands but the ultrasound found nodules. My calcium is being managed at the moment with medication but I still feel unwell.

Apologies if I sound clueless. It's probably because I am😀

[SlowDragon Administrator in reply to ScubaBlue]

did hospital say it’s ok to continue vitamin D

You may need further scans of parathyroid

Often difficult to spot the problem

parathyroid.com/parathyroid...

Remember, normal parathyroid glands are about the size of a grain of rice.

You do NOT need to have calcium levels above 12 to have a very serious tumor in your neck. Look at the size of the tumors in people who have calcium levels above 12... these tumors take serious tolls on people's lives as they sit in the neck and grow for years. Don't do that! 7) A "negative Sestamibi Scan" does NOT mean that you don't have a parathyroid tumor. It just means that the scan was not done correctly (65% of the time), or that the tumor is small and hiding behind the thyroid (35% of the time). If you have parathyroid disease then you have a tumor in your neck... regardless of whether your scan is negative or not. All of these tumors with the NEGATIVE SCAN graphic on them had a "negative" sestamibi scan at their home town x-ray department... but when we did the scan correctly, the scan was positive and we can see the tumor. Most scans are done poorly and are negative because they are poor quality scans!

[ScubaBlue in reply to SlowDragon]

They did recommend I continue at the dose I'm currently on. I hadn't realised the glands were so tiny

[Popscicle in reply to ScubaBlue]

Just to let you know that most parathyroid tumours are benign.

[Popscicle in reply to SlowDragon]

There are 4 parathyroid glands and they are found at the 4 ‘corners’ of the thyroid gland rather than within the thyroid. They are so close to the thyroid that they sometimes damaged during a thyroidectomy. Thankyou tho for those websites, I haven’t seen them all before. You’re like an encyclopaedia of knowledge!

[DippyDame]

Welcome!

Don't let this worry you. Some medics seem to think the rest of us are devoid of grey cells!! The more we know the easier it is to deal with their poor communication....and to ask them informed questions.

They are checking for possible causes of your hypercalcemia, one of these being thyroid disease flagged up by the thyroid nodules. The endocrinologist will investigate this

The following may help.

endocrine.org/patient-engag....

healthline.com/health/hyper...

If you are supplementing with vitamin D - which in higher doses can raise calcium level - it is advisable to combine with vitamin K2. The K2 helps direct calcium in the body to strengthen bones and teeth rather than to the soft tissues like the kidneys and the arteries where it may cause other issues.

Good luck.

[ScubaBlue in reply to DippyDame]

Great advice and links. Thank you. I'll definitely look into supplementing with K2. Thanks again.

[Persevere99 in reply to ScubaBlue]

Hi

Btw K2/Mk7 is the best option for taking excess calcium out of the blood.

Why have you got excess calcium? Is it supplements or diet?

All the best

Persevere

[Bristolians2]

Whilst waiting for your appointment Quebra pedra/stone breaker can help dissolve kidney stones. Def stop the vit d. Include as mentioned vit k2 mk7 also magnesium and boron to try to get calcium into the bones.

[ScubaBlue]

Thanks to everyone for all your help. I am told that the hypercalcemia is linked to my parathyroid but I believe there's more tests coming to rule out other causes. Apparently nothing more sinister has been flagged, which is relief.

[Popscicle]

since you were admitted with hypercalcaemia those scans and X-rays will Hv looked at the 4 parathyroid glands to see if they could be producing xs parathyroid hormone PTH. PTH increases blood calcium in 3 ways;

1. By increasing calcium release from bones.

2. By stimulating the kidneys to absorb more calcium from the convoluting tubules in the kidneys.

3. By activating vit d in the kidneys to absorb more calcium from the diet.

I suspect you Hv been referred to an endocrine surgeon because the hospital suspects your parathyroid glands are secreting too much PTH and you may need removal of 1 or more glands so that the remainsing glands can keep you in balance.

[Poniesrfun]

get a complete copy of all lab test results from the hospital and start a loose leaf binder with all notes, imaging reports and lab results.

Do you already see an endo for thyroid? Elevated PTH can be managed (at least for a while) with medication (calcitonin).

[birkie]

Hi scubablue❤️I have no thyroid full thyroidectomy in 2019

I've just come across your post, slowdragon as given you some sound advice, I've been diagnosed with primary hyperparathyroidism twice, one in 2004 they did the watch and wait 😡 I've developed kidney stones, ostiopeania, lost 5 teeth have calcification in most joints and heart due to high calciums over the years (gp never informed me of these calciums 😡).

Second diagnosis 2020.

I've had 2 US scans... One showed a nodule on the left side (6/7mm) parathyroid??

I then went for an F18 pet scan which showed a mass of (14x7x21mm) after fine needle aspiration this as turned out to be thyroid tissue, but they haven't even tried to see if perhaps there is a parathyroid gland buried in the mass😡 after all it up took on the scan.

I'm now awaiting the 4D ct scan to see if any parathyroid glands show up, but it's known as slowdragon said, they don't always show up but that doesn't mean you don't have one.

The endo /surgeon should go by symptoms.

Bloods can be hard for endos to understand

The goldilocks bloods are.. calcium over 2.85 ( nhs guidelines 😡)

PTH.... Over range on 2 consecutive tests

But there is normocalcemic hyperparathyroidism... This is a normal top end calcium, with over range PTH most endocrinologists don't recognise this, they think because your calcium as gone back into range the high PTH is due to vit D deficiency, this would only occur if your calcium is low, then you would need vit D to bring the calcium up therefore bringing the PHH down.

Giving high doses of vit D when your calcium is either above range or just within range can cause the calcium to become higher causing even more awful symptoms.

You need to be clued up on this condition as endocrinologists know very little about it, keep all bloodwork, get print outs.

There is a fantastic site... Hyperparathyroid UK Action4Change.

good luck👍