Type 2 Hyperparathyroid

[j.100.s]

Has anyone been diagnosed with hyperthyroidism and hypercalcemia? I’ve had 3 blood test in the last 5 weeks. The first my calcium level was slightly above reference and then the other 2 have crept up slightly each time. They have checked the parathyroid hormone level and that is also over range with vitamin D being insufficient.

I have a telephone appointment with GP on Thursday but would like some idea of what to expect.

Thanks for any help

 

[AndBreathe]

Has anyone been diagnosed with hyperthyroidism and hypercalcemia? I’ve had 3 blood test in the last 5 weeks. The first my calcium level was slightly above reference and then the other 2 have crept up slightly each time. They have checked the parathyroid hormone level and that is also over range with vitamin D being insufficient.

I have a telephone appointment with GP on Thursday but would like some idea of what to expect.

Thanks for any help

I would like to think the outcome would be a referral to Endocrinology to discuss the way forwards. When your Vit D is low, it can impact your body's ability to absorb calcium. Hopefully, that at least will be addressed immediately.

 

[j.100.s]

I would like to think the outcome would be a referral to Endocrinology to discuss the way forwards. When your Vit D is low, it can impact your body's ability to absorb calcium. Hopefully, that at least will be addressed immediately.

Thank you. I wasn’t sure if there would be more tests with the GP before any referral. Ironically, I am at hospital later on the same day for a follow up about a very large nodule on my thyroid which they eventually decided was not cancerous last year.

 

[AndBreathe]

Thank you. I wasn’t sure if there would be more tests with the GP before any referral. Ironically, I am at hospital later on the same day for a follow up about a very large nodule on my thyroid which they eventually decided was not cancerous last year.

Personally, I'd definitely mention in there, as it may be the nodule is "irritating" the parathyroid.

(Hopefully, they will do a bone profile if they haven't already to start keeping an eye on your bone health too, but that's not necessarily a Day 1 thing, except it gives better monitoring data.)

 

[j.100.s]

Personally, I'd definitely mention in there, as it may be the nodule is "irritating" the parathyroid.

(Hopefully, they will do a bone profile if they haven't already to start keeping an eye on your bone health too, but that's not necessarily a Day 1 thing, except it gives better monitoring data.)

Yes, I’ll mention it. My GP appointment is first so I should have some idea about what they are going to do first. My bloods included bone profile in December 2022 and then the 3 times I’ve had them done now so I can see the trends. Thank you

 

[AndBreathe]

Yes, I’ll mention it. My GP appointment is first so I should have some idea about what they are going to do first. My bloods included bone profile in December 2022 and then the 3 times I’ve had them done now so I can see the trends. Thank you

If your GP is going to refer you, it could be worth asking to have a named referral as you already have some form of relationship with the guy (or gal) looking after your thyroid nodules. You are perfectly within your rights to ask for a named referral, although in some instances it can lead to longer wait times.

Even if that referral is going off same day I'd mention it in the afternoon. The Endo may want, or indeed need, to take that information into account in dealing with your thyroid. He will be able to see your NHS GP record (unless he is private, but even then.....), so can get all that info asap.

Fingers crossed you may have got lucky with the timings of existing appointments.

 

[MrsA2]

Hi @j.100.s I might be in the same boat. I had a large thyroid nodule removed 23 years ago. Was told to expect medication but have never needed any so far. But I had full blood tests last week and am expecting something to be awry as something's off, mostly my thermostat. I ve been taking vitamin D through the winter, but only since covid. Awaiting my results with interest

 

[j.100.s]

If your GP is going to refer you, it could be worth asking to have a named referral as you already have some form of relationship with the guy (or gal) looking after your thyroid nodules. You are perfectly within your rights to ask for a named referral, although in some instances it can lead to longer wait times.

Even if that referral is going off same day I'd mention it in the afternoon. The Endo may want, or indeed need, to take that information into account in dealing with your thyroid. He will be able to see your NHS GP record (unless he is private, but even then.....), so can get all that info asap.

Fingers crossed you may have got lucky with the timings of existing appointments.

Thank you. Hopefully the timing will work in my favour. I’ll update later in the week

 

[j.100.s]

Hi @j.100.s I might be in the same boat. I had a large thyroid nodule removed 23 years ago. Was told to expect medication but have never needed any so far. But I had full blood tests last week and am expecting something to be awry as something's off, mostly my thermostat. I ve been taking vitamin D through the winter, but only since covid. Awaiting my results with interest

Hopefully you’ll get some answers from the blood tests and whatever is wrong can be put right. Let me know when you get your results

 

[j.100.s]

I would like to think the outcome would be a referral to Endocrinology to discuss the way forwards. When your Vit D is low, it can impact your body's ability to absorb calcium. Hopefully, that at least will be addressed immediately.

I haven’t spoken to the GP yet but it seems that I have already been referred to Endocrinology as an appointment has come through on my NHS app yesterday for August

 

[Pipp]

I have confirmed hypercalcaemia and hyperparathyroidism. It was discovered last year, after years of symptoms which include bone pain, (not joint pain, but pains in shins and ribs) abdominal discomfort including constipation, alternating with diarrhoea, severe headaches, exacerbation of hearing loss, extreme fatigue, and I seem to have a lot less patience than I used to.

My referral to Endocrinology was made in July, and I was finally seen in January. The consultant diagnosed the hyperparathyroidism from the blood tests, and symptoms. He advised that the vitamin D with calcium that I had been prescribed several years ago should be stopped. This is because the excess calcium increases the activity of the parathyroid glands. He also said I would need surgery, but the service is overwhelmed and I am not even on the waiting list yet. I am waiting for a follow up appointment. I was referred for a sestamibi scan, which involves an injection of a radioactive agent, followed by a CT scan. It was nothing to worry about.
In the meantime, I have to drink lots of water, have blood tests every 6 weeks , arranged by GP, and observed by them . If calcium levels are above a certain level I will need to go to hospital and have intravenous medication to ‘flush calcium from blood’. I have managed to avoid that so far, but it is frustrating having such a long wait.

I hope your refferal appointment results in some reassurance and action, @j.100.s

 

[AndBreathe]

I haven’t spoken to the GP yet but it seems that I have already been referred to Endocrinology as an appointment has come through on my NHS app yesterday for August

Is it to the guy dealing with your thyroid? He needs to know about this, so please, please do mention it.

 

[AndBreathe]

I have confirmed hypercalcaemia and hyperparathyroidism. It was discovered last year, after years of symptoms which include bone pain, (not joint pain, but pains in shins and ribs) abdominal discomfort including constipation, alternating with diarrhoea, severe headaches, exacerbation of hearing loss, extreme fatigue, and I seem to have a lot less patience than I used to.

My referral to Endocrinology was made in July, and I was finally seen in January. The consultant diagnosed the hyperparathyroidism from the blood tests, and symptoms. He advised that the vitamin D with calcium that I had been prescribed several years ago should be stopped. This is because the excess calcium increases the activity of the parathyroid glands. He also said I would need surgery, but the service is overwhelmed and I am not even on the waiting list yet. I am waiting for a follow up appointment. I was referred for a sestamibi scan, which involves an injection of a radioactive agent, followed by a CT scan. It was nothing to worry about.
In the meantime, I have to drink lots of water, have blood tests every 6 weeks , arranged by GP, and observed by them . If calcium levels are above a certain level I will need to go to hospital and have intravenous medication to ‘flush calcium from blood’. I have managed to avoid that so far, but it is frustrating having such a long wait.

I hope your refferal appointment results in some reassurance and action, @j.100.s

Are you still to take Vitamin D, but without the calcium? I'd want the Vit D monitored as well as the calcium levels. On the upside, we are heading into the months when at least some natural vitamin D could be around.

 

[Pipp]

Are you still to take Vitamin D, but without the calcium? I'd want the Vit D monitored as well as the calcium levels. On the upside, we are heading into the months when at least some natural vitamin D could be around.

Not taking VitD atm, on advice of consultant, as levels were way too high. I was prescribed Vit D supplement without calcium last September. Levels remained high. Which is suprising as I avoid sun as it triggers allergic reaction. Levels of Vit D are being monitored along with calcium and parathyroid hormone every six weeks. So far, all managing to be out of danger levels, though have come close with calcium and parathyroid. I am tweaking diet, was advised to reduce calcium (sobbing because of cheese , which is my main indulgence) and drinking lots of water. The water intake sort of restricts my movements, as need to pee more regularly than normal.

edit to include extra detail

 

[j.100.s]

Is it to the guy dealing with your thyroid? He needs to know about this, so please, please do mention it.

I’m not sure who the appointment is with, it just says the department but I will ask on Thursday

 

[j.100.s]

I have confirmed hypercalcaemia and hyperparathyroidism. It was discovered last year, after years of symptoms which include bone pain, (not joint pain, but pains in shins and ribs) abdominal discomfort including constipation, alternating with diarrhoea, severe headaches, exacerbation of hearing loss, extreme fatigue, and I seem to have a lot less patience than I used to.

My referral to Endocrinology was made in July, and I was finally seen in January. The consultant diagnosed the hyperparathyroidism from the blood tests, and symptoms. He advised that the vitamin D with calcium that I had been prescribed several years ago should be stopped. This is because the excess calcium increases the activity of the parathyroid glands. He also said I would need surgery, but the service is overwhelmed and I am not even on the waiting list yet. I am waiting for a follow up appointment. I was referred for a sestamibi scan, which involves an injection of a radioactive agent, followed by a CT scan. It was nothing to worry about.
In the meantime, I have to drink lots of water, have blood tests every 6 weeks , arranged by GP, and observed by them . If calcium levels are above a certain level I will need to go to hospital and have intravenous medication to ‘flush calcium from blood’. I have managed to avoid that so far, but it is frustrating having such a long wait.

I hope your refferal appointment results in some reassurance and action, @j.100.s

Thank you for this. I am speaking to GP on Thursday morning and then have appointment at hospital on Thursday afternoon about a large thyroid nodule so will speak to them at that time. My appointment with endocrinology is in August so not too long to wait.
I have had trouble with constipation and am really careful with that due to 2 hernia operations in the past year, one of them very large, so have been told I must avoid that. I have also had muscle pain in 1 leg, rib and back pain and 1 knee gets very sore but I’ve just ignored them. I also get very tired, but I’ve asked about that before and the doctors just shrug their shoulders so I just manage it.
I drink lots of water anyway so hopefully that will help.
Not sure about cutting down on cheese though! I don’t eat meat so dairy, cheese in particular, is a huge part of my diet. If that’s the case hopefully they’ll take it out very quickly

 

[j.100.s]

Is it to the guy dealing with your thyroid? He needs to know about this, so please, please do mention it.

Just had a reminder for the appointment from the hospital and this is with the general surgery department

 

[AndBreathe]

Just had a reminder for the appointment from the hospital and this is with the general surgery department

OK. Still mention it though. In your shoes, whilst I'd want to be rid of the troublesome nodule, I might want to ensure there was no potential to double up work if the parathyroid needs to go too.

Fingers crossed for you, whichever way it goes.

 

[j.100.s]

OK. Still mention it though. In your shoes, whilst I'd want to be rid of the troublesome nodule, I might want to ensure there was no potential to double up work if the parathyroid needs to go too.

Fingers crossed for you, whichever way it goes.

Thank you. I will definitely mention it. I have already had 2 operations in the past year so don’t want any more than absolutely necessary