Everyone responds differently to medication so treatment must be individually tailored to your needs.
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 around 18ng/mL is required for this to be possible.
What will I need to take?
We hope that we will soon have our own replacement parathyroid hormone (PTH 1-84) called Natpar which is currently being trialled in the UK. Meanwhile current treatment includes a daily vitamin D analogue, along with magnesium and vitamin D3 supplements to help keep your calcium levels stable.
Initially you will be given calcium supplements but, once stable, many people prefer only to use these for emergencies. If you have had a thyroidectomy you will also need to take levothyroxine.
When should I take my medication?
You don’t have to take all your medication at breakfast time. You can split your alfacalcidol (and calcium tablets, if taking) over the day. Many people find this helps to prevent calcium levels swinging and keeps them much more stable.
Calcium should always be taken with meals. Magnesium is best taken at bedtime. Both calcium and magnesium should be taken a couple of hours apart from Levothyroxine.
Levothyroxine should be taken on an empty stomach an hour before food or caffeine to prevent decreased absorption. Juggling your meds can be tricky but being consistent helps.
Vitamin D analogue
In the UK, you will usually be prescribed One Alpha (alfacalcidol) or sometimes, Rocaltrol (calcitriol). These are the brand names of two different types of vitamin D analogues. There are generic varieties too but you may find these don’t work so well for you. These capsules provide active vitamin D (also known as 1,25-dihydroxycholecalciferol or calcitriol) which helps your body to absorb calcium from your diet.
Rocaltrol is simply calcitriol but Alfacalcidol has to be converted into calcitriol in the liver. Read more about this under ‘vitamin D3’.
These are potent steroid like hormones that will require careful monitoring. Do not adjust these tablets on your own. They are not the same as the vitamin D3 supplements that you can buy over the counter (see below).
Doses up to 5 micrograms (mcg) daily may be required though between 2 – 3 mcg is average. 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 any).
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
Calcium supplements are used to back up the alfacalcidol or calcitriol and should be kept to a maximum of one or two tablets a day to protect your kidneys. They are made from calcium carbonate and can be quite astringent on the stomach too.
For this reason, it is much better to get more calcium from your diet instead. Talk to your doctor about reducing your calcium tablets and increasing your alfacalcidol. It can take a few months of juggling and testing to achieve this but many of our members have completely come off all their calcium tablets and feel much better for doing so.
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.
If you are a surgical patient, you may have been given larger doses of calcium by your surgeon until your parathyroid glands (hopefully) begin to work again. This is because alfacalcidol can suppress PTH.
If this is the case for you be aware that you will need to reduce the calcium and increase the alfacalcidol as soon as possible if permanent hypopara has been diagnosed (usually 6 months after surgery) or if you start to become more symptomatic sooner. Some people get very symptomatic and need alfacalcidol immediately after their operation.
Magnesium
Magnesium is very important for us. It helps to stabilise calcium levels and to abolish those tingly, twitchy, crampy symptoms. It works with vitamin D to keep calcium stable and to regulate the body’s nerve and muscle tone.
Our medical advisors recommend chelated magnesium bisglycinate which is more easily absorbed than other types. This is best taken at bedtime as it helps to relax you and can help with night cramps too. Take it away from levothyroxine and calcium medication. NHS recommended doses are 300mg for men and 270mg for women but the maximum limit is 400mg.
Everyone has different limits – taking too much magnesium for you will cause diarrhoea so start small eg 150mg each night.
Vitamin D3
Vitamin D3 (cholecalciferol) is crucial for your general good health and to maintain your immune systems and calcium stability. Don’t confuse this with the active form of vitamin D which we take as alfacalcidol or calcitriol, and which is really a type of hormone. Vitamin D3 ( from the sun, supplements or food) is usually converted into the active form or vitamin D by the action of parathyroid hormone (PTH).
Without PTH you can’t do this and so you need Alfacalcidol instead, to increase your active vitamin D levels. But you still need to maintain high levels of Vitamin D3 all year round. Ask your endocrinologist for a blood test. If you are very deficient you will need to take higher dose supplements (eg 5,000 mcg daily) for a few months before the level will increase. (Very high doses ie 20,000 mcg daily are not recommended in hypopara).
Once at a good level you can switch to a daily maintenance dose of 400 – 800mcg (summer) and 800-1600mcg winter). You will need to ask your endo to monitor your level with a yearly or twice yearly blood test. ( GP’s won’t often do this).
Vitamin D levels naturally fall during the winter and are normally at their lowest in April and highest in September. You need to keep your levels stable all year round, at around 75mmol/L.
Replacement parathyroid hormone (PTH)
PTH 1-34 (Forsteo) and PTH 1-84 (Natpara) are the two forms of replacement parathyroid hormone in existence but not yet licensed for use in the treatment of Hypoparathyroidism in the UK.
Forsteo is in use in the UK by some patients on a named patient basis but it is otherwise only licensed for use with osteoporosis patients.
Natpara is now in use in the USA and is currently being trialled in 37 countries including the UK. The trial is due to end in 2020.