Secondary Hyperparathyroidism - kidney stones

[kerryberry]

Hi! I'm still very new here! i have Hashimotos and saw an endocrinologist for first time in Jan 16. He tested my PTH and calcium, VIt D etc and i was found to have slightly elevated PTH with low Vit D so he declared me to have hyperparaythoidism.

Anyway, fast forward to recent months. I have visited my GP on several occasions complaining of left flank and low groin pain. Each time i have been told it can't be kidney stones as there is no blood in your urine. I have endometriosis so they said it was probably a flare up of that.

Anyway the pains have worsened and i have started needing time off work so the last time I vlsited I pleaded for a scan. This GP was very good (believing it to be something to do with my ovaries) so arranged a scan. I got one within a week and the USS took place on Monday (2 days ago). at my local hospital.

My GP rang last night to chat about scan results. She said scan was normal but went on to query why I had an abdominal CT scan in Nov '13, I told her i was admitted to A&E after i was knocked off my bicycle by a car and it was routine. She went on to tell me that the CT scan then showed several stones in my left kidney!!!! Nobody told me!!!!!! i have had stones in my left kidney for at least 3.5 years that we're aware of!!!!

Even when talking to the endocrine consultant he told me i can't possibly have kidney stones because my calcium and phosphorus are normal and you don't get kidney stones just because your vit D is low!

Anyway my GP has arranged the blue dye contrast xray so i should get that soon and I have emailed my endocrine consultant to alert him to the CT scan results of 2013. I was admitted to a different A&E with a blocked kidney in 2009 and I don't think those results ever turned up in any medical records at all! (I have seen a lot of my records since I issued a claim against the driver in my bike accident).

Oooh, i feel better for this! Does anyone have similar experiences they can share?

[kerryberry]

Ps - I posted here as I couldn't find a forum for parathyroidism but i see parathyroiders have posted here! i know they get their name from being next to the thyroid and they're not really connected..I don't think?!

[SmallBlueThing in reply to kerryberry]

They can be messed about by thyroid surgery.

hypopara.org.uk/home.php

[Hidden in reply to kerryberry]

They are four glands that sit behind the thyroid gland. What shoddy treatment, take scan but don't follow it up! I can't compete, sorry! 😜 My best wishes to you.

[kerryberry in reply to Hidden]

thank you! Now I've calmed down my rational brain is thinking ok you were in A&E and you weren't presenting with kidney stones, you were there for an RTA ...but I still feel angry! I've suffered needlessly and no-one would believe I had kidney stones!

[Clutter]

Kerryberry,

You're right, the four parathyroid glands are entirely separate to the thyroid gland and have a different function.

This site is recommended for hyperparathyroidism hyperparathyroid.org.uk/

[kerryberry in reply to Clutter]

thank you. I couldn't find a forum within this site, but did notice lots of people posting about parathyroid within this forum. I just needed somewhere to turn and I've noticed many people with thyroid issues also seem to have parathyroid issues too. thank you

[bantam12]

What is your calcium result ? diagnosing parathyroid disease on a low vitd and slightly elevated pth is a bit rash especially with a normal calcium and phosphate. If your calcium is low/normal your pth may have kicked in to raise it in which case once calcium has risen to normal levels pth would drop. Its possible to have primary para disease with a normal calcium but usually it will be high.

Kidney stones are a result of parathyroid disease not a cause, in secondary hyperpara disease involving the kidneys its because the kidneys are failing nothing to do with stones.

I think you need to find a doctor who is competent in diagnosing parathyroid disease, many are not.

[kerryberry in reply to bantam12]

I'll dig it out...just a sec!

[kerryberry in reply to kerryberry]

Problems & Diagnoses

 Acute Hashimoto’s thyroiditis (Oct 2015)

o confirmed on USS

o TSH stable, despite  TPOAb

o h/o goitre (2005)

 Chronic pain syndrome & hyperparathyroidism

 Hypothalamic amenorrhoea 20

to POP+Codeine

 Endometriosis

o amenorrhoea & night sweats on POP

o very low libido

Test Result N.R

TSH mU/L 1.95 0.3-4.7

fT4 pmol/L 19.4 9.5-21.5

fT3 pmol/L 5.4 3.5-6.5

LH / FSH U/L 4.9 12.7

E2 pmol/L <60

Testo. nmol/L 9-25

fTesto. pmol/L 215-760

PRL mU/L <450

GH μg/L

IGF1 nmol/L

Na+

mmol/L 135-145

K

+

mmol/L 3.4-5.0

Urea mmol/L

Creat mol/L

adj.Ca mmol/L 2.34 2.2-2.6

Chol. mmol/L

HDL / TGs

HbA1c <43

Hb / Hct

Alk P U/L58 30-130

PTH pmol/L 6.6 1.1-6.4

Vit D nmol/L 60 50-200

Glucose

MRI BMD

PIU

Also, he said in a follow up email that it was secondary hyperparathyroidism in reaction to low vit D, and assured me there was nothing wrong with my kidneys.

[bantam12]

Ok so your adjusted calcium is normal, can't see a phosphate result there, your pth is barely over the range and your vitd is a lot higher than usually seen in parathyroid disease, mine was 12 pre diagnosis.

You should have your calcium, pth and phosphate retested, all done at the same time and pth is time critical so must get to the lab as quickly as possible after taking the sample.

Your results don't scream out parathyroid disease, the stones possibly have nothing to do with it especially if you have had them a while, in pth disease stones only happen when calcium has been very high for a long time and yours is normal, at the time of the test anyway.

If you need more info do pop over to the pth forum, Clutter has given the link, thanks Clutter 👍

[kerryberry in reply to bantam12]

thanks, will do! I already feel like you've been more helpful than my endocrinologist!

[bantam12]

Has he prescribed vitd supplements ? I think he's barking up the wrong tree but it's vaguely possible that raising your vitd and calcium will lower pth, if you take vitd just keep a close watch on calcium.