A frustrating case of parathyroidism

[Judeth]

Has anyone been diagnosed with primary hyperparathyroidism but nothing shows up on a scan? I feel pretty fatigued most of the time and would like to get rid of the tumour. I have also lost bone density because of the calcium being taken from them and have to take alendronic acid to stop any further deterioration. Does anyone else share this experience?

[SlowDragon Administrator]

You might find this website helpful

parathyroid.com

There's a parathyroid support group here

healthunlocked.com/parathyr...

[sarosent in reply to SlowDragon]

SlowDragon, the parathyroid support group - is it not a forum, like this one? It is a collection of posts related to parathyroid ? How does one follow it?

[SlowDragon Administrator in reply to sarosent]

You can just read the posts

Ask a question on there if you wish

Just like this forum

[sarosent in reply to SlowDragon]

thanks, but I'm not seeing a place to join or follow it ?

[SlowDragon Administrator in reply to sarosent]

It's unnecessary to "join" as you have already joined healthunlocked on here

Click on "following" on top right

[sarosent in reply to SlowDragon]

I don't have a Follow or a Write option on the parathyroid site, like I do here ?

[Judeth in reply to SlowDragon]

Thank you SlowDragon. That's very helpful though I'm getting more bamboozled by the minute.

[bantam12]

It's not uncommon for the scans to be negative, mine was. You need to find an experienced pth surgeon who will go in anyway and search for it.

If you are near Bristol I can recommend one !

[Judeth in reply to bantam12]

Thanks Bantam12. I live in London but it’s certainly worth thinking about.

[Muffy]

Have you had a 4D ultra sound scan? If not, then it should show up on there.

[Judeth in reply to Muffy]

I'm not sure if it was a 4D ultra sound scan but will try to find out.

[bantam12 in reply to Judeth]

Have you had a sestamibi scan ? that's the one to have but can still be negative.

[Judeth in reply to bantam12]

I don't think so . I've never heard of a sestamibi scan.

[bantam12 in reply to Judeth]

You would know if .you had one, it involves a scanning machine bit like a CT and an injection of a radioactive agent which is absorbed by the overactive pth gland, takes ages as well !

If you want to read up on hpth I have a website dedicated to just that, lots of info and posts to read but the forum is no longer active

hyperparathyroid.forumotion...

[elaine2447 in reply to bantam12]

I am really sorry about the website, it was good. There are a few parathryoid groups on Facebook still.

Yes that sestimibi was a horrible prolonged thing. I paid privately at the NHS hospital as the waiting list was ridiculous and I really don't think the technician had a clue. According to Dr Norman, they are not so important and need to be done by an expert. I remember trying to avoid sitting near any pregnant ladies on the bus and train coming home.

[MaisieGray]

As I understand it, there can be a tumour in 4 out of 5 cases of primary hyperparathyroidism, but not all - less commonly, it can occur if 2 or more parathyroid glands become enlarged.

[sarosent]

I had 3 supposed bad parathyroid glands removed, and nothing had showed on the scans.

I only had high calcium & high PTH at the same time once, but I had many symptoms. Not so much fatigue but confusion, muscle weakness, insomnia, losing bone.

I've since wondered if my problem was that I was not converting the Vitamin D to the active version of Vitamin D 1,25, which they rarely test which is odd because that is what signals the parathyroid gland.

So see if they will test the D 1,25 to make sure you don't have secondary hyperparathyroidism, which is caused by not absorbing calcium, often because you are not converting the vitamin D to the active version which is done by the kidneys.

[Judeth in reply to sarosent]

I realise I know very little about my condition. What is PTH? I thought originally that the scan would show the affected gland, I've have it removed. End of, but apparently not. I've had to go on alendronic acid, which seems to have a lot of issues and side effects and wonder if my T score is any worse than other people my age.

[elaine2447 in reply to Judeth]

I'd avoid alendronate acid anyway. When the calcium becomes so high they will try and fob you off with pamidronate another nasty bisphosphonate which lowers calcium. This is not the answer of course, only a parathyroidectomy.

[elaine2447 in reply to sarosent]

I hope you have recovered now. You are lucky to be living in the US. We have the most awful endos in the UK and a handful of decent endo surgeons. However, they don't do twilight anaesthetics, but still the old fashion way of a general anaesthetic.

[sarosent in reply to elaine2447]

I think I'm recovered although lately been having the old symptoms so this thread was timely...

Yes, as bad as getting parathyroid disease treated in U.S. is (having read of all the poor people suffering for years from various forums back then) I know it is much worse in the U.K.

My endo did not want to refer me to surgery but reluctantly did after she reported my bone scan worse and I was in a mood! The surgeon tested Ionized (corrected) calcium which showed high, and listened to my symptoms.

I'm sorry you have had to go through what you have, it's disgraceful. It's like why do they need to go to school for so many years if all they do is wait for 2 blood tests to say "H" at the same magical moment?!

The parathyroid glands are the size of a rice - do they really think they will always be able to see something on a scan?!

[elaine2447]

I'm in the same situation. I've had iffy ultrasounds, sestimibi, ct scan and 4d scan. Spent over £6k in the last 4 years. Now back with useless NHS endo who says I am mildly elevated a bit like being mildly pregnant. My thyroid is very inflamed with Hashimotos thyroiditis so it's very convenient for them not to locate an adenoma. I live in the wrong part of the country. In Florida where the npc clinic is and better still Dr Larian in california, they go by blood tests and not scans. My endo has almost dismissed me and changed 6 monthly appointments to yearly. Tests in January ca 2.69 pth 11.02 so I guess she is waiting for ca to get to 3.00 when I'll be comotosed.

Got severe osteoporosis broken my wrist and T5 vertibrae so it's a constant state of anxiety for me what with Hashimotos as well.

Best to get your blood test results and go direct to a surgeon as endos in my opinion are totally useless.

[Judeth in reply to elaine2447]

Thanks Elaine. I'll try to take your advice.

[SlowDragon Administrator]

You can download the app. Made by Norman Centre in Florida

calciumpro.com

Add you own blood test results and it will categorise your likely diagnosis

You need calcium, vitamin D and parathyroid levels tested together

Difficult to get PTH levels tested privately as it's a time sensitive test. They do offer it as test at the London test centre. Not clear if it includes vitamin D and calcium as well, doesn't appear to. They need doing at same time

bloodtestslondon.com/parath...

[elaine2447 in reply to SlowDragon]

As you say, pth on its own is pointless, has to be done with vit D and calcium, and what a rip off £179.

[SlowDragon Administrator in reply to elaine2447]

It's an expensive test as must be processed within a short time

NHS should of course be doing the test.

But at least we now have the option to get private testing when let down by NHS

Thousands on here forced to test thyroid and vitamins privately. DIO2 gene test has to be private testing too (apart from in one area of Kent)

[elaine2447 in reply to SlowDragon]

Very true. My surgery wouldnt do the pth initially because of "it going off in the van" so I used to go to the walk in phlebotomy clinic at my so called wonderful training hospital in Cambridge. The laboratory there told me exactly how to ask the surgery to treat it but I never really trusted them to do it so I continued with a short train and bus trip. However, the surgery purchased a "spinning machine" and now do the three together, so have been going every three months for the past 12 months. The new and even more useless endo I am seeing has now said my results are "slightly elevated" showed no interest in how unwell I feel with Hashimotos as well (also ignored) and changed my six monthly visits to 12 months and wrote to the surgery telling them to do calcium every six months. They are all so ignorant, they dont even realise the three need to be done together. Anyway, I got a call from the surgery a couple of weeks ago reminding me of my three monthly tests so evidently the GP hasnt read the letter from endo.

I just hope that people are not using Blue Horizon for this single test as it will serve little purpose without the calcium at least and the Endo surgeon in Harley Street who uses the same lab last charged me £82 for the PTH.

[elaine2447 in reply to elaine2447]

I'll do another reply so that all can see this rather than as a reply just to you.

[bantam12 in reply to elaine2447]

You don't need vitd tested every time, phosphate is more important but usually just calcium and pth is sufficient and all that's done.

[elaine2447 in reply to bantam12]

They usually do a Vitamin D test to rule out secondary hyperparathryoidism. However, the three do work hand in hand. It is quite complicated and very frustrating, when my vitamin D drops so does my pth and calcium but still stay above the "normal range" (most hated expression I think for parathyroid and thyroid sufferers!!) endocrinediseases.org/parat...

[bantam12 in reply to elaine2447]

If you have consistently high calcium and pth then you have primary hyperparathyroidism, there is no sense in your Endo watching and waiting which most want to do, if there is an adenoma it needs to come out, if surgery is not an option Cinacalcet is needed to reduce levels.

[elaine2447 in reply to bantam12]

Tell me about it, I've had primary hyperparathyroidism diagnosed now for 3 years but you know what they are like in this country. Everything is about scans and not blood tests. I suffer quite crippling anxiety about it as I have severe osteoporosis so I know calcium is being leached from my bones. The surgeon in London was uncertain and said he wasnt in the habit of using people's savings (he was charging £15,000 then) He was very decent, old school but very expensive and wasnt happy about doing an exploratory and not finding anything.

Instead he referred me to a so called expert endo in osteoporosis, again very nice, charming etc. and suggested I find a cheaper surgeon locally and I should go on Prolia for say two or three years!!! No way I thought and within a month, FDA gave out a warning about it and said it mustnt be left off as it resulted in rapid bone loss and rebound fractures. When he wrote to my GP he referred to my "unexplained back pain",. This was xrayed 15 months later and I had T5 compression fracture. This will tell you the kind of treatment we get in the Cambridge area. Tripped down the stairs, covered from head to foot in bruises, record of severe oteoporosis. My cleaning girl found me and phoned for ambulance, kept me in for a day and sent home!!! If they had bothered to x-ray me, I could have perhaps had kyphoplasty, instead lost 2 inches in height and in awful pain all the time.

The local endo surgeon I just missed out on, Professor Wishart who was the first to introduce minimal invasive surgery as he has gone and concentrating on breast cancer surgery. I had fully intended to go to the Norman Clinic in Florida but have heard a lot of conflicting reports now about him. If I were well enough, I would go to Dr Larian in Beverley Hills, does a podcast every month, seems very charming and no more expensive including airfare and accommodation than the guy in London I saw. I just think this is my lot now, and have to put up with it all. I have traipsed back and forth to London and now I am exhausted physically and mentally and don't feel well enough to travel anywhere, not even the short distance to the phlebotomy clinic so I risk the gp surgery for blood tests. There is no way I could tolerate Cinacalcet. I live in the wrong area. If I were in the Bristol area I go to see Mr Morgan, he was absolutely brilliant with a friend of mine.

[elaine2447]

Medichecks do a parathryoid hormone test for £99, which is a lot cheaper than Blue Horizon, but never the less, quite pointless without the calcium. A couple of years back I kept emailing Medichecks about their pth test as they were implying it was tied up with thyroid and it has nothing to do with the thyroid. They thanked me and changed the wording but still insisted on this stupid sending back by post. I gave up in the end and was not my concern anyway. However, on checking again today, the chat thing came up. I said how confusing it still is as on the selling part it has "posting it" and on the procedure page it says "Special Instructions

This sample must be taken at our London laboratory."

Anyway, apparently they are upgrading their website and she said they hopefully will make it clear that you pay for the test but are then given a receipt and instructions for your blood draw to be done at the London based laboratory. Hooray the penny has dropped, so it could be combined with their calcium test also done at the same lab for £29 medichecks.com/calcium-test...

medichecks.com/thyroid-func...

As their vitamin D is finger prick or venous, I daresay that could be done at the same time as well for £39 medichecks.com/vitamin-d-te...

So the three would cost just under £170, so if my surgery kick off I know now where I can get it done. How Blue Horizon can justify £179 I dont know.

[sarosent]

Just wanted to mention for anybody reading this thread, to try and get Ionized (Corrected) calcium tested at same time PTH.

This one may finally show high calcium, as it did for me, unless that was just a coincidence.

In addition to the total Vitamin D (25 OH), I am still wondering if getting the Vitamin D 1,25 Hydroxy result - this is the active version of Vitamin D - can be more telling for secondary hyperparathyroidism.

Maybe the more scientific minds can provide input.

I hope you all can get some help with this!