Primary Hyperparathyroidism and Secondary calcemia

[hyperpara]

hi

i have been diagnosed with Primary hyperparathyroidism and secondary calcemia

I have (following a CT scan) last month been considered appropriate for surgery to remove the offending gland. (I was extremely reluctant to even have the CT scan because it has it's own risks of cancer)

I need to know if anyone has had surgery. What the wait time is likely to be, especially as i have been deemed appropriate for an emergency referral. how fast the symptoms are reversed, what the scar is like and how much recuperation time i will need etc because I don't now how to make time from a busy diary to even have the surgery!

Symptoms

I cant sleep. I am wide awake around 1am in the morning, even after i have tried to exhaust myself throughout the day with daily intense exercise, class after class (at least 2 hours a day with one day rest)

I don't feel extremely tired but i am physically exhausted and because I am self employed i can usually get away with getting out of bed for 9am if i cant get out of bed at my usual 8am.

I don't know what to do to try to sleep better, to prevent waking up like this. I have tried hot water bottles, music and dumb boring tv but nothing works.....

I suffer with body pain, muscle aches. My shins, ankles, heels, shoulders and chest ache. I even struggle to breath when my chest is at it's worst and i feel like i have been severely punched in the chest. I even have burning in my toe digits s at night requiring me to remove my feet from the duvet, yet my feet/toes are very cold during the day. Other times my wrists are painful but i do suffer with RSI in my wrists, which was generally manageable until recently.

My vitamin d levels stop dropping and i can feel this with heel pain. My GP advises that my levels are now 49 but that has been a significant increase previous levels because i have used injections abroad to boost my vitamin D. i dont think i absorbe vitamin d taken orally but i cant seem to get my GP to assist me with any thing but over the counter solutions. So I have now just gone behind the advice to take higher doseages via an oil form, against this advice!

My stomach is always bloated and i think i have swelling in my stomach, with a petruded belly even though i am relatively slim. i really want my stomach issues and the visibility of my stomach to go down. This affects the desire to wear nice clothes and wanting to stay casually dressed, especially with that elastic band bottoms for a comfort fit around my belly area

I do go to the gym very frequently (6 times a week) but i feel that i don't really lose weight and i feel as if my metabolism is slower, rather than faster. I dont know what my metabolism position is supposed to be with this condition but i dont feel that it helps in anyway for me to be leaner. This is an issue for me, even though it is aesthetic. I would appreciate the benefits of all the hard work of my gym efforts and making sensible food choices. i don't eat out very often and I don't eat take outs, at most no more than 1 a month, if that.

I have awful days which are very on and off. At times i cant do anything but i push through, other days i am ok with the gym stuff but i ache a lot after. I don't know if i need to do less.

Ideally after the gym i just want to sleep and catch up with what i don't feel i have managed to achieve throughout the night but it's not an option because i am self employed. i feel like i fight through the fatigue

Generally I feel low but i have to pick myself up and give myself a talking to (regularly)

If anyone is going through any of this, i would be grateful for some tips on how to cope and if my symptoms are normal

Jatinder

[bantam12]

I had surgery some years ago, I had previously had thyroid surgery so it was a bit more difficult to find and remove the adenoma. I did have quite a big incision due to previous op and scar tissue but it’s no worse than it was before.

Recovery I would say is a few weeks, depends if you have low calcium levels afterwards as that can cause issues, my calcium level hit the floor after op so I was on high supplements which really didn’t agree with me, luckily after about a month I could come off them.

In some places it’s done as a day surgery but I think that’s pushing it, I had my op first thing in the morning and stayed in 36 hours.

[SlowDragon Ambassador in reply to bantam12]

I thought with high parathyroid levels patient shouldn’t be taking vitamin D?

[Hedgeree in reply to SlowDragon]

Hi SlowDragon,

There are others on this site that will know more about parathyroids than myself.

So I can only state what my experience is so far; my parathyroid levels are above range, my calcium is low normal and my vitamin D was low in range.

Sorry I haven't got the actual ranges with me but I was given high dose supplements to bring vitamin D levels up and if I understand correctly that will hopefully bring the PTH levels back into range.

I may have misunderstood what the ENT registrar was explaining to me but it seems that if the pth levels don't come down he was describing that I may have normocalcaemic hyperparathyroidism. I get blood tests done next week and kidney scan due to ache.

From the reading I have done it is a very complicated area.

Best wishes.

[bantam12 in reply to SlowDragon]

In general VitD shouldn’t be taken as it sends the calcium even higher, the tricky bit comes before definite diagnosis because high PTH can be caused by the low VitD so most Drs will want to see if taking supps will bring PTH down. In my case despite my levels being below 12 I can’t take VitD so I managed to bypass that experiment ! It’s not a simple disease to diagnose so typically takes a long time and numerous repeat tests.

[Hedgeree in reply to bantam12]

Thanks for explaining that bantam12!

[hyperpara in reply to bantam12]

Really want this over and done with. I don't even have that sort of recovery time with work commitments and i really don't want the scar either, but what more can be said. (I even looked up whether this could be done internally with keyhole options but i dont think that is an option)

My symptoms are impossible to contend with. I don't feel that i have a quality of life. Not sleeping and feeling like crap most of the time with body aches or low mood.

My Iron levels are also low. My vitamin B is also low. My hair used to fall out in extremes a few years ago and it now makes up. My hair has gone very thin and i want to know if my hair will ever come back to normal again

I am trying desperately to try to get resources of vitamins from food or liquid form because i dont think i am able to absorb the oral medication or i don't get enough. i had intravenous injections abroad for B12 and Vitamin D, with an intravenous drip for iron and i felt ok for about 3-4 months, but that is not something that is done in this country and the levels have dropped again so it is all but a temporary solution

My GP gives me nothing so i have abandoned the GP route because it is like talking to a brick wall. No medication is ever offered, nor prescription vitamin d and folate constipates me. I get very little support suggesting that the area is too specialist for them and that i am under the endro team for them to sort. Is it usually a different surgeon than the endrochronolgist that i am referred to?

Were your symptoms like mines and do you know what caused it?

I am finding it very difficult to cope and try and find away to keep to my work commitments

I have been waiting for 2 months for a surgery and i try to ring for updates. It is getting to the point that I am considering now alternative private surgery, before after i enquired I was told that even privately I will have to pay to see the Consultant and then have a further wait for another 4-6 weeks after that before I can have any surgery anyway.

I also don't have private health insurance so this will be an expensive route

[bantam12 in reply to hyperpara]

Firstly the scar will be done so it disappears into a natural neck crease and honestly does it matter what it looks like, if you are needing it done then it needs to be done. Sorry to say that your health has to come before work commitments and as you are feeling so bad surely you want to resolve the problem as quickily as possible.

Keyhole surgery still needs external incision sites and it’s not an option for pth surgery as the surgeon needs to see the area to find the adenoma and check for others that may be hidden.

GPs are not experienced in this area so you do need an Endo who is and then a surgeon who deals with parathyroid ops, the surgeon I had was a general surgeon but he specialised in thyroid and parathyroid surgery, getting the right surgeon is very important.

[SlowDragon Ambassador in reply to bantam12]

My symptoms are impossible to contend with. I don't feel that i have a quality of life. Not sleeping and feeling like crap most of the time with body aches or low mood.My Iron levels are also low. My vitamin B is also low. My hair used to fall out in extremes a few years ago and it now makes up. My hair has gone very thin and i want to know if my hair will ever come back to normal again

These sound far more likely due to being HYPOTHYROID

Please add most recent thyroid results

When hypothyroid we frequently develop LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels

What vitamin supplements are you currently taking

ESSENTIAL to test TSH, Ft4 and Ft3 plus both TPO and TG antibodies

Vitamin D, folate, ferritin and B12 levels

Please add most recent results

Hyperparathyroid causes ……”bones, moans and groans”

parathyroid.com/diagnosis.htm

It’s if course possible to have both hypothyroidism and hyperparathyroid issues

[bantam12 in reply to SlowDragon]

It’s not uncommon for Drs to confuse parathyroid symptoms with thyroid problems. My Endo was convinced my symptoms were because I was on to much Levo 🤦🏻‍♀️ and then because my VitD was to low 🤦🏻‍♀️ the symptoms of all can be very similar. But I agree Hyperpara may need both looked into !

[SlowDragon Ambassador in reply to bantam12]

Hyperparathyroid doesn’t (usually) cause low iron/ferritin/B12/folate

That all screams hypothyroid

[bantam12 in reply to SlowDragon]

I agree although patients who feel to ill to follow a good diet can become low in vits and mins.

Thyroid testing should be done as routine when trying to diagnose hpth, in an ideal world anyway !

[birkie in reply to bantam12]

Hi❤️My history is graves total thyroidectomy in 2019, first diagnosis of primary hyperparathiyroidism was 2004 I had to watch n wait, diagnosed again in 2020..nhs didn't want to know and again decided to do the watch n wait again... Well I wasn't and saw a private parathyroid surgeon in Oxford this Nov, he identified a nodule thinks its a parathyroid gland, he diagnosed me as normocalcemic hyperparathiyroidism, he asked when I had my full thyroidectomy did the surgeon do any parathyroid and calcium vit D together before surgery, I said no.. He said he would have definitely done those test's in the same way if I was having a parathyroidectemy he would have checked my TSH T3, T4.. 👍

[SlowDragon Ambassador]

welcome to the forum

Do you also have thyroid problem?

Or just parathyroid

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low iron/ferritin levels common with hypothyroidism especially autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[hyperpara]

Thank you. I want this operation over and done with!

Are you now ok and free of all these symptoms?

Yours sounds worse. I have only had a CT scan so hopefully they know about the size of the adenoma but i have been given no specifics of this. i was also supposed to have an ultra sound but i have not had this yet either.

Really want this over and done with. I don't even have that sort of recovery time with work commitments and i really don't want the scar either, but what more can be said. (I even looked up whether this could be done internally with keyhole options but i dont think that is an option)

My symptoms are impossible to contend with. I don't feel that i have a quality of life. Not sleeping and feeling like crap most of the time with body aches or low mood.

My Iron levels are also low. My vitamin B is also low. My hair used to fall out in extremes a few years ago and it now makes up. My hair has gone very thin and i want to know if my hair will ever come back to normal again

I am trying desperately to try to get resources of vitamins from food or liquid form because i dont think i am able to absorb the oral medication or i don't get enough. i had intravenous injections abroad for B12 and Vitamin D, with an intravenous drip for iron and i felt ok for about 3-4 months, but that is not something that is done in this country and the levels have dropped again so it is all but a temporary solution

My GP gives me nothing so i have abandoned the GP route because it is like talking to a brick wall. No medication is ever offered, nor prescription vitamin d and folate constipates me. I get very little support suggesting that the area is too specialist for them and that i am under the endro team for them to sort. Is it usually a different surgeon than the endrochronolgist that i am referred to?

Were your symptoms like mines and do you know what caused it?

I am finding it very difficult to cope and try and find away to keep to my work commitments

I have been waiting for 2 months for a surgery and i try to ring for updates. It is getting to the point that I am considering now alternative private surgery, before after i enquired I was told that even privately I will have to pay to see the Consultant and then have a further wait for another 4-6 weeks after that before I can have any surgery anyway.

I also don't have private health insurance so this will be an expensive route : (

Jatinder

[SlowDragon Ambassador in reply to hyperpara]

while waiting recommend getting full thyroid and vitamin testing done yourself

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Or

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

come back with new post once you get results

[Shellian]

Hi hyperpara, I was hyperparathyroid as part of a genetic condition I have called MEN2a. I didn't know I had the condition at the time and thought many of the symptoms you describe were down to stress and being busy all the time. I especially remember getting out of bed and hardly being able to walk for the pain in my hips and leg bones. My case was complicated as I also had Medullary thyroid cancer at the same time, so the symptoms contradicted each other. To cut a long story a bit shorter I eventually had a bi- lateral neck dissection which included thyroid removal ( to get rid of the cancer) and all my parathyroids were removed, only one had the adenoma , but as so much was removed it was difficult to keep the others. You can imagine my scar was really big all around my neck up to my ears at each side but I can honestly say it is now very faint and not too noticiable with my hair down. So please don't worry about a scar.

Immediately after the operation all the aches and stiffness in my bones stopped, it felt like a miracle. If you have hyperpara then I would recommend you go to the parathyroid.uk website, there is a wealth of information on there. There is also an American site that is very informative. The condition they describe as Moans, Groans and Stones because of the symptoms.

Important that if you do have surgery you find a surgeon who has done plenty of these ops before as it is a rare condition and the parathyroids are only pea sized.

It is difficult now for me to keep my calcium levels stable as I now have hypoparathyroidism. However, usually, only one is removed and the other three parathyroids should be able to balance your PTH adequately without you needing further medication. This may be the case for you.

If you also have a thyroid problem, well that is another matter.

Good luck. X

[meme]

hi.

Your scar should be small. I have seen some no bigger than an inch long. It will look bad at first with lots of swelling that can take weeks to subside. However, a year later you will have difficulty finding it! It’s always done in such a way as to go into the natural folds of the neck.

It was a day case. 7.30 am he reported to the private clinic and by 4 pm he was back at the hotel. One gland removed.

My husband had no down time. We went out to dinner a few hours after his op, although he was still high on anaesthetic 😂.

Your bones and kidneys will thank you for the rouges removal.

[Batty1]

I would stop worrying about the scar because its really not noticeable once it heals and recovery isn’t that big of a deal either but everyone is different.