post surgical hypoparathyroidism

just been in for a total thyroidectomy but discharged after the op with hypoparathyroidism and hypocalcaemia.

What actions must the surgeon have done to leave me wi these additional problems, after surgery PTH >0•1 and calcium levels down to 0•8 .

[bantam12]

I think you mean Hypoparathyroidism, it may be temporary while the parathyroids recover from the shock, meantime you need to be taking calcium and keep restesting to see if they recover.

I had hypoparathyroidism after surgery for hyperpth, eventually it righted itself.

[Hidden in reply to bantam12]

apologies, yes I did mean hypo. (Edited)

The consultant looked at the PTH level and his comment was “well they aren’t going to come back from there”. I take that to mean that it will be permanent

I was rushed back in via A&E within 24hrs with palpitations across chest, throat and face put on IV calcium drips and in hospital for another 4 days

[Regenallotment in reply to Hidden]

Bess you what an ordeal. You got a 2 for 1 with that op. Rest up, let the specialists monitor and advise. Have you looked up the parathyroids? Tiny little organs hidden behind the thyroid. Likely to have been affected by your surgery. Hope you are feeling less bumpy now you have your drip. 🌱

[Hidden in reply to Regenallotment]

had a good read but just wondering how they could take out all 4 given they are quite spread, just wondering if they all share one blood supply

[2020kel in reply to Hidden]

I had TT and parathyroids removed/damaged at the same time I knew have to take 6 x calcium with vitamin d tablets daily alongside my levo but once they got my levels right I feel relatively good now most days your gp should be doing regular blood tests until you're level

[Hidden in reply to 2020kel]

I have 4 of the big calcium tablets then 2 other calcium capsules as you say on top of 250 levo. At GP today

[2020kel in reply to Hidden]

I also found out due to this forum you cannot absorb B12 very well after so I also take one of them every day as well found it helped

[Hidden in reply to 2020kel]

thanks, I will keep my eye on that

[Batty1 in reply to Hidden]

I sounds like he removed them … not good if thats the case now you will have to take calcium for the rest of your life .

[Hidden in reply to Batty1]

that’s what I have been told. I can see one/two being removed but surely if that has happened you ensure you look after the others. I have even heard of transplanting 1/2 into a muscle.

[Batty1 in reply to Hidden]

I had mine transplanted in the muscle near my neck …. Good surgeon will go after and remove them and transplant before attempting the thyroid removal… Thats the only thing that Im happy about is my surgeon was awesome now if I can get and awesome endo life would be good!

[porter5]

It may be the anaesthetic not the surgeon?

[Hidden in reply to porter5]

that’s interesting, not read that before, how would the anaesthetic do that?

[porter5 in reply to Hidden]

Re anaesthetic problems. Just google those words and you'll get a list of explanations.

[porter5]

specifically I don't know. But I have been damaged by an unnecessary operation and I looked into possible causes and anaesthetics came up. Of course it could simply be incompetence. on the part of the surgeon or the anaethetist. The NHS makes 237 million errors annually according to a paper in the journal the Lancet. Paradoxically the coming doctors strike may result in less deaths while they are absent. Quite a few instances where that has happened. Reminds me of the case of the young woman with 2 young children close to delivering her third , when she developed appendicitis. Anyway she had the operation and a week later she died. An investigation found that the young man who did the op wasn't a fully qualified surgeon but a trainee and this op was his final exam. He was using keyhole surgery and took out an ovary instaed of the appendix!! He was supposed to have been supervised but clearly not properly, We legally have the right to know the surgeon who is doing an op and what his track record is. I am not sure about the anaethetist, likely the same.

[Hidden in reply to porter5]

very interesting. From what I have read so far losing all 4 parathyroids would be an inexperienced surgeon. From what I know the surgeon who carried out the procedure was being led by the surgeon who I thought was doing the op.

[bantam12 in reply to Hidden]

My surgeon couldn’t find any parathyroids when I had hyperparathyroidism op ( presumably destroyed during thyroid op 40 years before) my calcium levels post op were virtually non existent and I had horrible symptoms.

Conclusion is I only have at most 1 or part of one somewhere but it now works so I no longer need calcium.

Just give it time.

[Brightness14]

Your surgeon should have explained to you about your parathyroids. Mine were removed and replaced in my shoulder and arm. They take a while to start working again, mine only took a few weeks. In the meantime you are usually given some calcium to leave hospital with. Your calcium blood test levels should be done and the calcium stopped when the levels are normal again. The nurse came to take my levels over a couple of weeks after leaving hospital. I live in France, perhaps it's different in the UK.

[Hidden in reply to Brightness14]

they said in hospital that the calcium they have put me on I will be on for life, with that I am not expecting them to come back into operation. Blood tests were done repeatedly over the week in hospital and started at the GP’s surgery today

[Brightness14 in reply to Hidden]

A top surgeon always saves or tries to save them. Perhaps because yours were damaged in some way before the op, maybe. You will be OK on the calcium if it's checked often anyway. Good Luck.

[AS14]

I have permanent hypoparathyroidism after TT. I had no idea parathyroids had been removed until day after surgery, and that was when I had severe drop in calcium. Dreadful experience, doctor had little to no knowledge and I was left with no follow up in that respect.

Long story but after many calcium crashes, couple of bad consultations ( at my insistence on just seeing a doctor), I knew I needed a better doctor.

I spoke to parathyroid Uk who gave me a list of calcium disorder specialists and ended up with a really good doctor.

I have been stable on the same meds for years with the occasional relatively mild symptom which is quickly resolved with extra medication and calcium levels are pretty stable. Ive only had one severe calcium low that required urgent treatment once since being in the care of this doctor, I was having them fairly often before that.

I take two different calcium meds plus vitamin D and have blood tests every 3-6 months.

When asked at a later appointment with another doctor who asked who was my surgeon, he burst out laughing, and asked why on earth did I let him do my surgery. So Im afraid I cant answer your question because I had no idea it was even a possibility if I had theres many questions Id of asked.

Id recommend contacting parathyroid uk, they’ll help you find a good doctor if need be and can answer your questions,

[Hidden in reply to AS14]

thank you for the advice. I never realised that the parathyroids were that important until my calcium crashed.

[AS14]

Me too. I cant say I remember anything being said about the possibility pre surgery, I had no idea what was happening when the symptoms came on . No blood tests, nothing until it got serious. Absolute shambles.

[Hidden in reply to AS14]

I was told they had gone and with two blood tests showing the calcium rapidly dropping they sent me home to chew on some tablets, ridiculous and I think negligent

[AS14]

I was treated in hospital when symptoms came on, but it took full blown tetany to prompt treatment. Awful experience but still sent home later with no medication, no information, nothing, shocking to think of it now.

I had numerous calcium crashes once home, trips to A&E where Id be treated sent home with instructions to see gp, nothing else.

Gp had no idea what to do he said “ this is over my head”, but decided to send me to an endocrinologist who was even more clueless. She said it wasn’t something she’d had experience with but at least gave it a name, first time I was told hypoparathyroidism. She sat looking through books and online then went and got another doctor who literally shrugged his shoulders. All she could recommend was have a glass of milk next time calcium drops. I said thats not good enough not only is calcium dropping awful experience its also dangerous and after numerous severe calcium lows and trips to A&E a “ glass of milk”, is not the answer. Made no difference just told sorry but go back to gp.

Thats when I knew it was up to me, I spoke to parathyroid uk who gave me the name of good doctor . I then went to gp said I want to be referred to him, with in a few weeks Id seen consultant, lots of blood tests and started on treatment. Ive only had one calcium crash in years, symptoms if they do happen are mild and quickly dealt with extra calcium.

Absolutely disgusting , total negligence , I was just left.. Its ironic that this good calcium doctor is dreadful with thyroid, he was looking after me for that until I realised how bad he is so told him I’ll let gp sort that. Truth is hes just as bad so Im sorting myself like so many of us.

Its no wonder I have no trust in doctors

[Hidden in reply to AS14]

my GP is good so I expect her to be on the case. I have written to my Endo to inform him what has happened and also to my Haematologist who treats my blood cancer as they have all worked together on my bloods in the past. Let’s hope, as in your case, it’s not all down to me

[AS14]

It sounds like youve got it all hand, Im sure you’ll be fine.

[Rowan4]

hi, just wondering how you Are Getting on now? I’m scheduled for a tt and my endo has told me permanent Hypoparathyroidism is very common Afterwards. I’m thinking maybe I should look for another surgeon. I’m based in Ireland though

Does anyone know of any calcium doctor specialists I could speak to here, I’d like to be as prepared as possible

[Hidden in reply to Rowan4]

From all I have heard and read permanent hypoparathyroidism following a Thyroidectomy is very rare, temporary hypopara is fairly common. With bloods this week calcium levels have just reached the bottom of the normal range, I am on the highest rates of Alfacalcidol and Adcal-D3.

To be honest over the last week the above has taken a back seat as histology showed my thyroid contained cancer. Been to see Oncology nurse the other day and seeing consultant Tuesday to discuss radioactive iodine ablation, should be an interesting chat

[Rowan4]

I’m really really sorry to hear this

[Hidden in reply to Rowan4]

It was an incidental finding as the thyroid was being removed for thyrotoxicosis and the cancer was contained within it. As they didn’t know about it they weren’t looking for other signs during the op.

It had been 3yrs 6 mths since it was last scanned and 18 mths since the surgeon agreed to remove it, maybe they should do further scans while you wait. Ironically 2/3mths before surgery when I kept getting knocked down the list by people with thyroid cancer I did ask the Endo how he knew that mine hadn’t turned cancerous. He had no answer then and so I look forward now to asking again