Must I take my tablets for ever?
Yes. Hypoparathyroidism requires lifelong treatment with oral medication. It is important that you take your tablets every day.
However, if you have temporary post surgical hypoparathyroidism, you will be able to come off medication once your parathyroid glands start to work again. Generally a PTH level of aound 18ng/mL is required for this to be possible.
What is the ‘normal’ calcium reference range?
The normal calcium range is around 2.10 – 2.50mmol/L although different labs may use slightly different ranges. Getting a result back that falls in this ‘normal’ range does not necessarily mean that you will be feeling OK. This range is for ‘normal’ people. You will probably feel extremely symptomatic at each end of this range and feel more comfortable somewhere in the middle. You will find that you have a small window within this range where you feel best.
What calcium level is best for me?
A long term maintenance level of 2.00mmol/L to 2.25 mmol/L is recommended in order to help protect your kidneys. This may be difficult for some people to achieve.. Maintaining good levels of magnesium and vitamin D3 will help you to tolerate lower calcium levels. Everyone responds differently to medication so treatment must be individually tailored.
I went armed with information from the Hypopara facebook group and asked if my calcium tablets could be reduced, alfacalcidol increased and could I have some prescription vitamin D3 please? To my delight, my endo was very happy to comply.
What is the aim of treatment in hypoparathyroidism?
The aim of hypopara treatment is to abolish symptoms, not to restore ‘normal’ calcium levels in the blood. This means that you need to keep your calcium levels high enough to avoid symptoms of hypocalcaemia but low enough to avoid causing problems with the kidneys.
Which tablets will I need to take?
You will need to take a vitamin D analogue and a calcium supplement. You may also need to take magnesium and vitamin D3 supplements to help keep your calcium levels stable.
Vitamin D analogue
Alfacalcidol and Rocaltrol are the brand names of different types of vitamin D analogues which provide calcitriol ( the active vitamin D, or hormone also known as 1,25-dihydroxycholecalciferol). Alfacalcidol is converted to calcitriol in the liver. Rocaltrol is calcitriol. Alfacalcidol is used more in the UK , Rocaltrol in the USA.
Please note: These are not vitamin D3 supplements that you can buy over the counter but potent steroid like hormones that will be prescribed by your doctor and will require careful monitoring.Do not adjust these tablets on your own.
Doses up to 5mcg daily may be required though around 2 – 3 mcg is more usual. As Alfacalcidol helps your body to absorb calcium from the gut, ie from your diet, the more Alfacalcidol you take the fewer calcium supplements you will need.
If you also have epilepsy please be aware that some of your medicines (Phenobarbitone, Phenytoin, EpanutinÒ , Carbamazepine, TegretolÒ ) reduce the levels of vitamin D in the body. Larger doses than usual of Alfacalcidol may be required to compensate for this effect.*
Calcium supplements are used to back up the Alfacalcidol or Rocaltrol and should be kept to a maximum of 1200 – 2000mg. It is better to get more calcium from your diet than from supplements. It can be helpful to split your dose through the day rather than take it all in the morning , have a big peak and feel low by bedtime. Calcium levels need to be checked regularly by blood tests.
Magnesium and calcium act together to help regulate the body’s nerve and muscle tone. We recommend chelated magnesium which is more easily absorbed than other types.
There are 2 types of vitamin D. Normally PTH drives the conversion of the vitamin D3 we get from the sun into the active vitamin D hormone. Without PTH you can’t do this and will instead need Alfacalcidol to increase your active vitamin D levels. But you still need to maintain high levels of Vitamin D3. Vitamin D3 is important for your general health as well as your calcium levels, especially in the winter. Ask your endocrinologist for a blood test. If you are deficient start taking Vitamin D3 supplements. If you are very low you may need to take high dose supplements for a few months before the level will increase.
Is there a replacement parathyroid hormone?
PTH 1-34 (Forsteo) and PTH 1-84 (Natpara) are both forms of replacement parathyroid hormone . Forsteo is not licensed for use in hypoparathyroidism but some patients have been able to get it via their endocrinologist on a named patient basis.The global REPLACE trial on PTH 1-84, in which Hypopara UK members participated in 2010, was very positive and led to the FDA approving the use of Natpara for hypopara treatment in the USA. In 2018, Natpara was finally approved by the EMA and clinical trials began in Europe. The ‘BALANCE’ study is now recruiting in centres around the UK.
Is auto – transplantation an option?
A parathyroid gland may be transplanted at the time of surgery ( eg a thyroidectomy) into the arm or neck where it is hoped that it will continue to release parathyroid hormone. This procedure appears not to have been used much in the UK but it is something we are keen to encourage as it has been found to work on at least one known occasion. We await results.
Can post surgical hypoparathyroidism be prevented?
During thyroid or neck surgery, care must be taken by the surgeon to identify and locate the parathyroid glands and to avoid damage to them, if possible. A very experienced endocrine surgeon should be sought. Anyone undergoing thyroid or neck surgery, radiotherapy to the neck or the chest, or chemotherapy (drug treatment for cancer) should be monitored for symptoms and signs of low calcium levels.
What should I do in an emergency?
If you experience a crisis, and you are having acute and severe symptoms of low calcium (a hypo) that has not responded to extra calcium, you will need urgent treatment. Call an ambulance or go to A&E where you will have to give your history before having a blood test. If your calcium is low you will be given intravenous calcium (when the calcium is given directly into a vein via a drip). You may also be given magnesium if those levels are low and you will have an ECG test to check your heart rate.
An Emergency Card is useful at these times which you can order here.
Emergency Guidelines for healthcare professionals are here
Does what I eat affect my calcium level?
Yes. What you eat does affect your calcium levels. Alfacalcidol works by helping your body to absorb calcium from your diet and regular meals with a good calcium content will help to keep levels stable. This doesn’t have to be high in dairy foods – see a good list of caclium foods on the forum under Useful Stuff. And here is a good article by Dr Winer on the importance of diet in hypopara.
What else can I do to help myself?
As this is a rare condition and it’s effects are so individual and unpredictable, it is important that we learn to recognise our own unique set of symptoms and monitor the ways in which they relate to medication and other influences in order to maintain stable levels. Taking control of your condition is an important step in the process. Hopefully, sharing our experiences and working together with our doctors will help to move us towards an improved quality of life.