In response to the many questions about how the coronavirus may affect people with parathyroid conditions we have compiled these answers with the advice of our medical advisors.
General advice
Always follow the advice from these official sources, which are regularly updated:
NHS Coronavirus Advice and Information https://www.nhs.uk/conditions/coronavirus-covid-19/
World Health Organisation (WHO) Advice https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public
Government – Public Health England (PHE) https://www.gov.uk/coronavirus
Travel Advice https://www.gov.uk/guidance/travel-advice-novel-coronavirus
How can I protect myself, my family and everyone else?
Prevent the risk of infection:
- wash and lather your hands frequently with soap and water for at least 20 seconds, especially when you get home or arrive at work. If not possible, use an alcohol-based hand gel.
- use tissues if you cough or sneeze and bin or flush them immediately and wash your hands. Use the crook of your elbow if you don’t have tissues.
- avoid touching your face
- practice good hygiene – keep yourself and your home clean, disinfect surfaces regularly.
Stay at home to stop coronavirus spreading
- stay in and only go out
- if you need urgent food or medicine, or o exercise once a day.
- To travel to work if absolutely necessary
If you have to go out keep 2 metres away from other people at all times.
Follow the PHE/ Government guidance on social distancing https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
What do I do if I feel unwell ?
If you develop a dry cough, high temperature and are feeling short of breath, you need to continue taking your medication and use the 111 online coronavirus service at https://111.nhs.uk/covid-19/ . They will ask you a few questions and tell you what to do next. You do not need to call your GP surgery or 111 unless your symptoms get worse. In that case please contact 111.
Should I stay at home?
Yes. If you feel unwell, even mildly, you should isolate yourself for 7 days. Everyone else in your household must then stay at home for 14 days even if they are well. This is to prevent the spread of infection.
To protect others, do not go to a GP, pharmacy or hospital. You and all household members should remain at home. Do not go to work, school, or public areas, and do not use public transport or taxis.
https://www.nhs.uk/conditions/coronavirus-covid-19/
https://www.gov.uk/government/publications/covid-19-stay-at-home-guidance/stay-at-home-guidance-for-households-with-possible-coronavirus-covid-19-infection
About 80% of people can recover from coronavirus at home and without needing to go to hospital.
Keeping in touch
If you live alone, have a plan to keep in regular contact with friends, family members or neighbours. Ask for help with shopping. You could ask them to contact you regularly by phone or text to check you are ok.
Look after your emotional wellbeing
Our support groups are very active at the moment with lots of people helping each other with emotional support and practical tips. Sign up here https://parathyroiduk.org/membership to join our support groups or call the helpline on 01342 316315.
Questions about Hypoparathyroidism
Any infection brings additional challenges to the management of hypoparathyroidism so you should make sure that your extra medication needs can be met.
Does having hypoparathyroidism put me at increased risk of catching coronavirus?
At the moment, there is no evidence that having hypoparathyroidism alone makes you more likely than anyone else to contract coronavirus.
Am I more likely to have severe illness from coronavirus?
For most people, coronavirus causes mild symptoms, and they recover quickly after a few days. However, hypoparathyroidism is a very varied condition. Some people may have very unstable calcium levels, a weaker immune system or other conditions which makes illness more difficult to manage. Calcium levels may also be affected by coronavirus which increases the risk of hospital admission for regular blood tests.
Am I in the ‘vulnerable ‘category?
If you are over 70, pregnant, have chronic kidney disease or a weak immune system you will be classed as ‘vulnerable’ and at increased risk to severe symptoms from coronavirus. https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
If you have any of the serious conditions on this list as well as hypoparathyroidism, or you are on immunosuppressant drugs, you will be classed as ‘extremely vulnerable’ and at high risk of severe illness from coronavirus. https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19
If you are at high risk you will be contacted by the NHS by Sunday 29 March 2020.
If you believe you are in this category and have not had a letter you can register here https://www.gov.uk/coronavirus-extremely-vulnerable
Will I be able to see my GP or endocrinologist during the pandemic?
Surgeries and outpatient clinics are now closed so appointments will be held by phone unless you are a new patient or have an serious problem that requires treatment. If you need urgent medical advice about your calcium levels contact your GP or endocrinologist.
How do I get my repeat prescriptions?
Don’t go to the surgery. Think ahead and order online or post or email your repeat prescription request to your surgery. Make sure you state which pharmacy you use to collect your medication. Ask your pharmacy about delivery services.
If I catch coronavirus could it affect my calcium levels?
Yes. Any infection and illness are likely to affect your calcium levels. The best thing you can do to protect yourself from having a hypo is to keep taking your hypopara medicine as usual and run your calcium levels slightly higher than usual to prevent it falling too low.
Low calcium can be a medical emergency and may require hospital treatment. Download the Emergency Card from our website here
How should I manage my calcium levels if I get coronavirus?
Remember that infection may cause your calcium level to fall so you may need to take more calcium supplements.
- Infection can increase of decrease calcium levels. In isolation you won’t be able to get calcium blood tests done so pay close attention to your symptoms.
- In these circumstances, it may be best to run your calcium slightly higher than usual to avoid the risk of a an emergency hypo. Be aware that even a quarter of a calcium tablet extra a day can make a big difference – you don’t want your levels to go too high either. Visit the support group if you’re worried.
- Look out for the signs that your levels may be going lower or sometimes higher. For a hypo (hypocalcaemia) these include tingling, spasms, cramp, and for a hyper (hypercalcaemia) they may include passing more urine than normal, especially at night; being very thirsty; headaches; tiredness and lethargy. Check our website if you’re not sure about your symptoms parathyroiduk.org/symptoms
- Read our advice on managing calcium levels https://parathyroiduk.org/living-with-hypopara/self-help-guide/how-to-manage-your-calcium-levels-practical-steps/
- Be aware that magnesium, Vitamin D and phosphate levels may also change with
- If you feel your calcium is dropping take some additional calcium (500-1000mg tablet) and eat some calcium food/drinks. Dairy food especially yoghurt is best in an emergency. You should notice an improvement in an hour.
- If your symptoms don’t improve contact your GP, endocrine nurse or endocrinologist or seek medical help via 111 ASAP. If levels are falling very fast you may need an extra 0.25mcg of Alfacalcidol and some magnesium s well as extra calcium while you wait. Try to keep calm as anxiety can make things worse.
- If you are vomiting or not able to keep fluids (or medication) down, get medical help as soon as possible.
If I need to increase my calcium dosage while staying at home, how do I get extra medication ?
Explain the situation to your GP to get a new prescription and a blood test if possible. If this is not successful then call your endocrinologist.
Some over the counter preparations contain calcium which can be bought as back up – talk to your pharmacist for advice.
Can diet help increase my calcium?
Remember that diet is very important in helping to keep your calcium levels up. It is very important to keep well hydrated so have plenty of drinks. Eat little and often with calcium rich food to keep your levels up. Don’t over- do the dairy food, there are plenty of non- dairy calcium sources such as sardines, kale, almonds, tahini and plant milks and yoghurts that work well on a daily basis. https://parathyroiduk.org/living-with-hypopara/self-help-guide/diet/
Will there be a shortage of medicines due to the coronavirus pandemic?
Drug companies have already built up stockpiles of medicines in preparation for Brexit and have now been asked to maintain this level of stockpiling. This should mean medicines will continue to be available, even if there are temporary disruptions to the supply chain. We don’t currently know of any coronavirus-related drug shortages
I have coronavirus and I’m worried I might infect my partner who has hypoparathyroidism. What can I do?
If you are unable to move out for 14 days and you have to stay at home together try to keep away from each other as much as possible.
- sleep in another room if possible.
- try to keep 2 metres (3 steps) away from each other
- avoid using shared spaces, such as kitchens or bathrooms, at the same time as each other
- open windows in shared spaces if you can
- clean a shared bathroom each time you use it, for example by wiping the surfaces you have touched
- use a dishwasher if you have one – if you do not have one, use washing-up liquid and warm water and dry everything thoroughly
Does the lack of parathyroid glands and thyroid weaken my immune system?
There is some evidence that patients lacking parathyroid glands and a thyroid have some elements of the immune system that may not operate as well as “normal” individuals. In the event of infection you may need to increase your medication.
I have chronic kidney disease. Am I at risk?
It will depend on how severe the kidney disease, its original cause and the current treatment. For example, some kidney diseases have an immune basis and some may be associated with a weakening of the immune system. If there is severe dehydration because of diarrhoea and/or vomiting then the kidneys could become compromised. Acute kidney injury (AKI) has been reported in some coronavirus cases.
My children have CaSR so their calcium runs below the normal range. If they become ill at home should I increase their medication myself? My endocrinologist has no experience of this condition.
Not all doctors are familiar with managing rare conditions like this so ask them to contact one of our consultants/endocrinologists with experience for advice. It will help treatment decisions to be made if pre- illness testing has been performed. This can indicate what the “normal” prevailing calcium is so that a change in calcium can be recognised.
If hypoparathyroidism is not recognised as being a high risk condition how can we ensure appropriate treatment in hospital?
The management of rare conditions is not always understood. Order or download the Parathyroid UK Emergency card and a copy of the ESE guidelines. Explain your needs to the hospital team. Provide written instructions to a responsible person who understands your condition and will stand up for you if you are too ill to speak for yourself. The hospital team should contact your own consultant endocrinologist or a calcium specialist for advice if unsure about medication adjustments or treatment. (see Parathyroid UK Clinical advisory team)
I live in the Republic of Ireland. Is the situation any different there?
Individual hospitals have different levels of risk and containment procedures at present, so patients should check on their own hospital procedures. Hospitals are now using phone clinics (unless a personal meeting is really necessary). Your endocrinologist will phone you, put an action plan in place and dictate a letter as usual, and staff will set up follow up as usual.
Follow the advice from the HSE https://www2.hse.ie/conditions/coronavirus/coronavirus-treatment.html
Employment
I have coronavirus, how do I prove it to my employer?
If you have been told to stay at home because you have coronavirus you will need to get an ‘isolation note’ to give to your employer as evidence. Use this online service to get a note https://111.nhs.uk/isolation-note/
I am in a front- line occupation. I want to work but should I stay at home?
No, if you are fit and well in every other way and your condition is usually stable. Your help and support is invaluable to our society, thank you for your determination to continue despite having hypoparathyroidism. If your condition would mean that you are not able to carry out your duties fully then staying at home would be best for everyone.
I feel I should stay at home but my employer won’t let me as hypopara isn’t recognised as high risk condition. What can I do?
Hypoparathyroidism is not classified as high-risk unless you also have other conditions on the high list risk. However, if the calcium is difficult to control or there are other relevant issues (e.g. mental health issues or other autoimmune conditions), then these should be discussed with your doctor, occupational health and employer.
Questions about Primary Hyperparathyroidism
Am I more susceptible to the infection than other people?
No. There is no evidence that having primary hyperparathyroidism alone makes you more likely than anyone else to contract coronavirus. However, if you have low vitamin D you may have a weaker immune response.
What are the implications of contracting this virus for people with PHPT?
For most people, coronavirus causes mild symptoms, and they recover quickly after a few days. However, if you have other conditions you may be at increased risk of more severe illness from coronavirus.
If you are over 70, pregnant, have chronic kidney disease or a weak immune system you will be classed as ‘vulnerable’ and at increased risk to severe symptoms from coronavirus. https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
If you have any of the serious conditions on this list as well as hypoparathyroidism, or you are on immunosuppressant drugs, you will be classed as ‘extremely vulnerable’ and at high risk of severe illness from coronavirus. https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19
If you are at high risk you will be contacted by the NHS by Sunday 29 March 2020.
If you believe you are in this category and have not had a letter you can register here https://www.gov.uk/coronavirus-extremely-vulnerable
Are parathyroid operations likely to be delayed as a consequence of the outbreak?
Surgeons are being moved to frontline clinical duties in most hospitals and will be working very hard during this very difficult time for the NHS but BAETS have assured us that their surgeons will try to make the best possible decisions for their patients. Despite their efforts to keep services as close to normal as possible, realistically that may not happen in the coming months. Decisions about treatment will need to be made locally and follow local governance structures. In some cases this may mean deferring investigations, appointments and surgical treatments, depending on the risk profile of the patient. This does depend on the level of disruption to health services at any given time, and the severity of the thyroid and parathyroid condition being treated.
I have low vitamin D – what are the implications of this if I get infected?
None in the short term but you should have this corrected if possible. It is important for vitamin D status to be “normalised” (minimum 25OHD above 50 nmol/L). Immune function can be affected by low vitamin D status.
24th March 2020 ©Parathyroid UK and Clinical Advisory Team.