Thyroidectomy, T3, and hyperparathyroidism

[birkie]

Hi everyone ❤️

Well I'm almost at the end of my tether 😭 I've been so ill for the last few months I have posted on here, after my thyroidectomy in May 2019 I developed a kidney stone in the June (2019)... Again this is the 3 hospital admission for passing stones, I have previously passed them at home to.. I attended ambulatory care a week later for bloods and a scan which said I'd passed a stone and had right ureter dilation, they also found high calcium in my blood( no PTH done) they told me to contact my surgeon about the high calcium, I need to note my surgeon took me off the calcicews 2 weeks after my op saying my calcium was normal, so this high calcium had nothing to do with taking calcium supplement, my surgeon got bk to me saying he was not bothered about my calcium, since then I have had thyroid blood taken every 6/7 weeks for thyroid blood(on T3 now) my calcium was also taken but not always, these are the results from 29/4/19...calcium 2.75...range.. 2.10...2.60) this they attribute to me being hyerthyroid, the next is 24/6/19... 2.67..this was the one at ambulatory care the one the surgeon dismissed, the next one was on the 21/9/20..2.61....) 1/3/21..2.68...the last time calcium was checked was on the 29/3/21...2.35) my calcium has been bouncing about for years, I had 2 pth done in June 2020 which showed pth of 8.1 and the Aug 2020 at 9.5...,my last thyroid results were.. TSH.. 0.05..range.. 0.30...4.50....T3..5.9....range.. 3.10..6.80...T4...2....range.. 11.00...22.00....on T3 only that is why my T4 is low... My symptoms are not of over medication, I'm always weeing soooo thirsty, l'm having fast heartbeats consistent with primary hyperparathyroidism, I'm only on 30mg T3 split in to 3..(droped from 35mg as gp said I'm over medicated) still having same symptoms even after the drop, I had an endocrinologist appointment yesterday been wating since last June for it.. (face to face) about the diagnosis of primary hyperparathyroidism, I turned up at 9am, my friend took a day's leave from work to take me, its a hospital a town over, only to be told the endocrinologist in question does not take clinics here on Wednesdays and she is only doing phone appointments 😠.. She did ring me on my mobile after I complained, she was so unprofessional it was unreal, she said she had no idea why I was their, (my appointment had been made through my surgery) she refused to see me at her current clinic in the city a number of miles away, she said my calcium was fine, and she would not refer me to a surgeon, go back to your gp... 😭😭.. This is totally wrecking my life I was told once my thyroid was removed I would start to feel well... And I think that would be the case as my last bloods look OK but its the parathyroid symptoms causing me grief now, I just can't see me going on anymore, 6 hours under the knife for thyroidectomy because it was toxic and my quality of life is worse.... 😭😭😭😭😭, I really don't know how these so called medical professionals sleep at night😠

So sorry for this long post but I'm totally lost now.. 😭😭😭

[SlowDragon Administrator]

TSH.. 0.05..range.. 0.30...4.50....T3..5.9....range.. 3.10..6.80...

T4...2....range.. 11.00...22.00....

on T3 only that is why my T4 is low

30mcg T3 after thyroidectomy isn’t high dose

Was last test done as early as possible in morning before eating or drinking anything other than water and last 10mcg of T3 approx 8-12 hours before test

Hopefully others on T3 only may comment

greygoose Marz DippyDame

Are you taking any vitamin D supplements. This can raise calcium levels

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

Endocrinologist put me on vitamin D last Nov 2020 but I felt worse and after contacting the hyperparathyroidism Web site it states you should not give a patient with suspected primary hyperparathyroidism vitamin D as it only lowers the PTH.. I came off the vitamins in December 2020..so my calcium is still high last one was on 1/3/21 at 2. 68...range 2.10...2.60.. Its going up because of primary hyperparathyroidism, both consultants I've been talking to via phone appointment wrote saying I probably have primary hyperparathyroidism, was diagnosed first with it in 2004,no treatment given just wait and see... Well I have waited and seen what's happened to me, I have now got ostiopeania in spine, calcification in both knees and ankles, kidney stones passed!! admmition to hospital for passing stones June 2019, gal stones, just diagnosed, all symptoms of untreated primary hyperparathyroidism, my calcium has been bouncing about for years, looking bk in my records I have one at 2.89...it says see doctor, doctor never saw me.... I dropped 5mg because my gp said my symptoms were due to over medication, I have a fast heartbeat clocked last night at 127...119.. 113..on the 30th May it went to 167..i was so scared, it is a symptom of primary hyperparathyroidism to.... Not over medication, I'm weeing all day and night, super thirsty.. (THIS IS HOW THE BODY RIDS ITS SELF OF EXSESS CALCIUM THROUGH THE URINE) body bone pain so bad server headaches every morning it feels like I've drank 2 bottles of wine, back to being bedridden no energy total fatigue, this will only get worse as time goes on its gotten worse since last June.. I should be feeling OK now, I'm not.. 😭😭😭

[SlowDragon Administrator in reply to birkie]

bantam12 has some experience of parathyroid issues I think

Is there a parathyroid support group you can contact?

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

Again thanks for your help 🤗

I've joined the hyperparathyroiduk action change... They are giving me some great advice.... But seeing as I've already had thyroidectomy and are taking thyroid replacement T3... This parathyroid thing is not helping me recover at all... 😭😭😭😭😝

[bantam12]

As I've said previously the only thing you can do is find an Endo who will refer you to a surgeon, or find an experienced para surgeon and ask directly which Endos refer to him/her.If your results are not screaming hpth you may well struggle to get surgery.

[Fleure]

Hi my mother had the same problem and did lots of research on specialists in Europe and uk and they don’t exist she found a team working out of Tampa Florida maybe worth looking at their website Good luck

[bantam12 in reply to Fleure]

There are very good parathyroid Endos and surgeons in the UK but the challenge is getting referred to them, I ran a parathyroid forum a few years ago and we compiled a list from members.

We had a few members who traveled to Tampa and their surgery wasn't always successful, some had to have it redone back here in the uk !

[birkie in reply to bantam12]

Hi bantam12I'm on the hyperparathyroiduk 4 change site.. I'm getting some info from them.. But could u look over my calcium levels from 2015..onwards,,

13/11/15...2.61

14/11/15..2.67

2/12/15..2.47

16/6/17..2.89

4/2/19..2.45

29/4/19...2.75

24/6/192.67

21/9/20..2.61

1/2/21..2.55

1/3/21...2.68

29/3/21...2.35......they will not do any more calcium as they have a normal one.... I had 2 PTH done one in June 2020...8.1 one in Aug 2030 9.5...endo put me on vitamin D, it lowered the PTH to 4.4 but the calcium was 2.68...i have ostiopein, kidney stones passed , gal stones, calcification of knee and ankle joints calcification in shoulder joint.. I'm weeing none stop very thirsty have a bad headache every day, tremors fast heartbeat, 133,144,147 yesterday all resting... 🤔

[bantam12 in reply to birkie]

Calcium levels have to be read at the same time as pth level so looking at calcium or pth separately isn't much good, the level of one has to be inappropriate to the other to mean anything. You need both to be high/over range at the same time from the same test, not done at different times. Your 2.89 calcium result might be high but depends what your pth was, at that time, if it was low/normal then that 2.89 is ok. The other calcium results aren't that remarkable but again depends on pth at that time. Have you had 24 hour urine calcium done ? It will show what you are excreting so can give a better indication.

[birkie in reply to bantam12]

Hi bantam12

No pth was ever given... I had 2 over range calcium levels on in May last year think it was 2.67..then another one in June then had pth done in June pth was 8.1...then 9.5....the endo who looked over my records saw the calcium results I posted to you, he wrote to my doctor asking why no pth had been taken, also the very fact I have ostiopeania, passed kidney stones 3 times hospitalised I have gal stones, tremor fast heartbeat, calcification in ankles knees and shoulders,vitamin D of 29,plus my renals are not good, is enough to Diagnose primary hyperparathyroidism, I've suffered for years thinking it was ME fibro, cfs.. 🤦‍♀️🤦‍♀️

[birkie in reply to bantam12]

Hi bantam12

I've found my 24 hour urine results,

24hr urine calcium 2.1.....range 2.5...7.5

Urine calcium 3.46...

Done July 2020....but noted is a small volume of urine, so test was performed again in Aug see below

24hr urine calcium 2.51....

Urine calcium 3.2

This was the only 2 tests given... I always check my urine when I get loin pain which I do regularly last Saturday it showed blood in the test, I did not want to go to hospital AGAIN as I was coping with the pain at home, Im so thirsty so I was drinking loads anyway, I re did the test on the Sunday and it was clear, in 2004 when I was first suspected of having primary hyperparathyroidism, consultant wrote, this could be the early onset of primary hyperparathyroidism, my 24hr urine test showed calcium oxidate crystals in my test.. But as I've said the consultant did the wait and see aproach, no treatment 🤷‍♀️

[bantam12 in reply to birkie]

So your urine calcium is low and doesn't show you have excess to excrete.As you are thirsty and weeing a lot could you have kidney disease ? that can cause secondary hpth which doesn't involve an adenoma, my husband had kidney failure and secondary hpth, he took meds to control it.

[birkie in reply to bantam12]

HiThat was my first thought, but after numerous tests after passing kidney stones, utis, they have found nothing, my kidneys are fine, just as always I have passed the stones as I have right ureter dilation through bladder consistent with passing renal calculus.. No stones found in in tube but consists with passing a stone.. Its been the same the 3 times I've been admitted to hospital, I had a scan on my kidneys after the calcium oxylate crystals were found.. It says the kidneys look normal empty bladder but reasonable views of the uterus which is normal... 🤷‍♀️🤷‍♀️ I had full hysterectomy in 2003...i have no uterus... 🤷‍♀️🤷‍♀️ Strange... 🤔

[bantam12 in reply to birkie]

Just looking at my results pre surgery,

24 hour urine calcium 10.14 ( 2.5-8.00) high

Phosphate 0.8 ( 0.8-1.5) low

Calcium 2.74 ( 2.1-2.65) high

PTH 6.7 (1.6-6.9) to high for calcium level

So you can see how they all have to be looked at together to get a definite diagnosis.

[birkie in reply to bantam12]

Hi bantam12 (Date.. May 6th 2020.) ..I've found the result with pth and calcium and there's a phosphate to..

Phosphate.. 83..range..30...130..ul

Calcium.. 2.60..range( 2.10..2.60)

Adjusted calcium 2.51

Pth..8.1...my pth went to 9.5..

Also found results from march 21..

Pth..(4.4...) range.. 1.60..6.90..was on vitamin D for for 5 weeks discontinued them in Dec 2020..

Calcium.. 2.79

Adjusted calcium.. 2.68

No phosphate done.. These are the only ones in my records, but that does not rule out the fact I have the damage in passing kidney stones, have gall stones ostiopein, calcification in joints, and on looking through the records I found the scan on my brain which stated white matter calcific, 🤷‍♀️ really don't know what that means 🤔

[bantam12 in reply to birkie]

Your urine calcium excretion is low so you don't have excess to clear, phosphate normal, calcium normal/occasionally elevated, pth normal/occasionally elevated ( which will happen as one or other goes up or down) and VitD normalised your pth.Your results are not necessarily going to make an Endo think hpth, as you know ! and your symptoms seem extreme for your results.

Frequently symptoms remain mild (if any) until calcium goes above 3, personally I didn't have any symptoms despite my obvious hpth but everyone has their own point where symptoms can kick off.

I cant really be any help as it's not clear what's going on, I wonder if seeing a Haematologist might be useful.

[birkie in reply to bantam12]

Hi bantam12 These are the only bloods I've had done, so goodness knows how my PTH and calcium, phosphate, vitamins d were in those years, I've been ill and still are, even after thyroidectomy, some people who have had surgery for parathyroid removal have calcium just slightly above range and the same for the pth... Or even in range bloods, it's the symptoms and damage it does to the body that is the bench mark, the blood ranges results don't mean much if you have the symptoms and damage, I unfortunately have the damage and are having the symptoms they have became worse since 2019..😭

[Jenny583 in reply to birkie]

Birkie, It seems that you have reached a crossroads.Would it be possible to get a private scan of your parathyroid glands? Evidence to prove to the Medical industry that your symptoms are justified would be additional ammunition.

I wish I could find the research that was available online when I had suspected primary hyperparathyroidism many years ago. Please don't let the damage to your body continue...

😰

[birkie in reply to Jenny583]

Hi jenny583💗I had the sestamibi scan but it showed no uptake, but I know these scans can be poorly done and should not be used as a tool to diagnose phpt, its the symptoms and damage that's used for diagnosis, but Drs and some endos just don't get this.. My endo is going off my last bloods being in normal range now.. But not looking at the fact I now have, ostiopein in my spine, kidney stones passed over the years, gall stones, bone pain, calcification in joints, insomnia, peeing all the time thirsty all the time headaches it goes on.. My gp said I would not get referred to a surgeon with my latest bloods.. Honestly 😤 I have fought to get my thyroid bloods in good range they are in good range now but I still feel dreadful, it can't be my thyroid meds causing this, I reckon I've had phpt for years wrongly diagnosed as ME/cfs/fibro... I said at the time my pain is bone/joint not fibro.., 🤷‍♀️🤦‍♀️🤦‍♀️

[Jenny583 in reply to birkie]

Birkie, You took the words right out of my mouth! & there is also this which echoes what you have stated: youtu.be/CsQ2t-yqqHM(Not working as expected?).

But even the above link seems to ignore symptoms - to some extent.

Is there a means of scanning the glands in the UK? if the cost is too much could you organise a 'go fund me' or similar?

This debacle has gone on too long... Another US endo here: youtu.be/1FS9oC0Aomg(Not working as expected?)

The above 2 US endo's just like the 'Cleveland clinic' - where they are motivated to get excited by the symptoms bc of the $$$ to be made, as opposed to the UK NHS where the numbers game is practised by Dr's who are motivated by burying the patient to save £££.

I found this online:

"Ultrasound can find about 60% of parathyroid adenomas (if the scan is actually performed by an endocrinologist or surgeon, or a tech that is experienced in parathyroid ultrasound and who has been told that that is what they are looking for!). However, ultrasound only finds the easy to locate, superficial tumors.21 Oct 2020"

I have not come across a private test where adenoma can be shown (with just a preliminary search online).

Apologies birkie, as I dare say that you have covered everything where you live in the UK, but I am frustrated by this whole ridiculous charade that you are being put through all these years.

Worried about you!

[birkie in reply to Jenny583]

Hi jenny583❤️

And thank you for posting that info to me❤️❤️ yes I have been like a student at uni lately researching everything on phpt... My vitamin D was 29 last year pth 8.1 in June then went to 9.5 in Aug.. Unfortunately only one calcium was done but that was in April think it was 2.76..then another one in May was 2.67..that's what started me questioning why my gp had not told me about the raised calcium I had to point them out on my print outs, he said "ho it's only mild, I made him send them to an endo who did the 2 pth's and here I am over 12 months later, fighting to get seen by a surgeon, the endo appointment I had was not even at the clinic I attended, 😤😤

[Jenny583]

Hi birkie, No doubt you read the article ( or similar ) where this quote is from:

"Sestamibi scanning is the preferred way to localize diseased parathyroid glands prior to an operation. HOWEVER, sestamibi scans are wrong at least 50% of the time, even at the best places in the world. Be careful folks!"

The following template is from NICE:

Evidence review D - NICE Guideline Templatenice.org.uk › guidance › documents › e...PDF

- showing the various tests & costs of tests available in the UK, there are 1 or 2 that quote a 90% accuracy. Not much use though if no UK Dr's interested in seeing that you get well!

Most of the 90% accuracy tests seem to be from the US, can't recall the name of test now though, but again - not much use to a very sick UK resident. 😟

The only other possibility that I can think of is if you can find a pro bono lawyer specialising in medical disputes.

It sounds like you may have ectopic adenomas. I don't suppose medical insurance is a possibility?

I wish you all the best, & pray that you get the care that you deserve. x

🙏

[birkie in reply to Jenny583]

Hi jenny583❤️

Here's something to ponder over concerning parathyroid scans, a friend of mine rang me in a bad way she told me her symptoms, she thought it might be her thyroid that had gone overactive like mine, but when she said she was weeing loads and couldnt quench her thirst I told her it sounds more like a parathyroid gland thing... It was she had a high calcium, and pth, vit D low...had the para scan showed nothing.. One month later had para removal.. ( think she went private this was last year) she had 6 para glands. He took 5 and a half away.. So the scan showed nothing and she ad 6 of them.... 😲😲

[Jenny583 in reply to birkie]

Wow, You saved your friend! Have you been in touch with that surgeon birkie?

[birkie in reply to Jenny583]

Hi jenny583When I needed an emergency thyroidectomy 2 surgeons were mentioned he was one of them but was in Newcastle, I got one closer to home, but he was good my scare is near invisible, my mate went to him in Newcastle, from diagnosis to surgery only took 3 months so I think she went private as she told me she was getting nowhere with the endo.. The endo just kept giving her re bloods and the drug to lower the calcium, the same endo I have... 😤😤

[Jenny583 in reply to birkie]

Well birkie, It sounds like a contagion...a contagion of idiots in white coats round your way!Been looking at your history. I am lost for words. Is there any chance of private insurance?

Shortly before I met my late Husband he was dying in hospital, paralysed, in pain, & looking like a corpse. His friends took him out of there & shipped him to a private clinic in England, his friends paid the clinic fees & air fairs, The local hospital disappeared his records. The English hospital saved his life.

I was looking at the Nuffield health options where they mention interest free credit, but I don't know if Nuffield is a general charity or if it's for workers with insurance (like in USA.)

Have any of the Dr's read this article?

Blood Calcium Normal Ranges According to Age..mhtml

parathyroid.com/Normal-Bloo...

That article could live in your handbag...

A whip round saved my Hubby though. Hope you find the way through soon.

[bantam12]

@Jenny583 Are you referring to a Spect or 4D CT ? these are not perfect either especially when pth isn't very high.

The USA is no better than the UK in diagnosing and treating hpth, as I said in my reply above some of my forum members travelled to the USA for treatment and came back needing further surgery !

We have very good Endos and Surgeons but the challenge can be getting referred to them.

As with any medical problem we only here from the minority who have difficulties in getting diagnosis and treatment, there are many more who have been successful and moved on.

[birkie in reply to bantam12]

Hi bantam12

As I've said to jenny my friend had 6 parathyroid glands.. Scan showed nothing.. He took 5 and a half left half a one in... 🤷‍♀️ Why... I'd have wanted the lot removed, he told her that half gland could go overactive to but said she has to have yearly blood work for pth and calcium

[bantam12 in reply to birkie]

You never want all parathyroids removed because that leaves you with hypoparathyroidism which is much harder to treat and live with.

When I had my parathyroid surgery the surgeon was concerned I had none left due to previous thyroid op, he couldn't locate any other glands after removing the adenoma, I was put onto calcium immediately and it wasn't a pleasant experience! luckily I had something left somewhere as my calcium level eventually returned to normal.

So even a tiny part of a gland left is far better than nothing !

[Jenny583 in reply to bantam12]

Hi bantam12, I doubt if it matters what test is available in the UK. I gather that referrals are the problem in that they seem to follow pot luck.So Private surgeons need a referral as well? I am so ignorant!

[Jenny583 in reply to Jenny583]

I came across a charity called Nuffield Health, they do interest free loans for surgery, but I am guessing only the ££££ surgeons accept non referrals? 😟

[bantam12 in reply to Jenny583]

The Nuffield is not a charity, it's a private hospital group. Yes all private hospitals offer loans but the costs are high and obviously have to be paid back !

[Jenny583 in reply to bantam12]

Sorry bantam, I have no answers then, Nuffield claim to be a charity, & "not for profit".The UK is a dangerous place is all I can say.

[bantam12 in reply to Jenny583]

They aren't a charity in terms of giving free treatment, they are actually very expensive as you can see by their price list. I have had appointments at Nuffield myself and paid a lot more than other private hospitals.

[bantam12 in reply to Jenny583]

It's not "pot luck" if results clearly show an adenoma is causing the problem, the difficulty comes when results don't follow a pattern and scans are negative. Yes a referral is needed for both private and NHS surgeons.

[Jenny583 in reply to bantam12]

Hi bantam12, Is there an adenoma result following proper protocol that hasn't been messed up by Dr's & nurses then? if so then it sounds like pot luck to me! calcium over range & bones moans groans & something overtones, not to mention all the expert papers we have read on here, surely that is a good case. BTW I saw some adverts for private operators. They all stated "no GP referral necessary."

[bantam12 in reply to Jenny583]

I'm done here as you already seem to know all the answers, I bow to your wisdom !

[Jenny583 in reply to bantam12]

It's not wisdom, it's anger. Anger at the state of the UK health industry!