Experiences of 570 parathyroid patients during Covid-19: an informal survey
Liz Glenister, CEO Parathyroid UK. Nov 2020
Read the summary of this survey by consultant surgeon Tom Kurzawinski here
Introduction
The UK had been through the first lockdown from March to June 2020 followed by regional lockdowns and was in the middle of the second lockdown when the survey was sent out. Our support groups, email service and phone line had all been extremely busy with requests for information and urgent support. We wanted to understand in more detail how our members were being affected during the pandemic and how vulnerable they felt.
An informal survey was devised and run through Survey Monkey over the first two weeks in November 2020 with the intention of finding out how our members had been coping during the pandemic, where we needed to focus in terms of providing additional support and information and whether any issues might be highlighted that needed further investigation.
A record 570 people with various types of parathyroid conditions responded. 71% said they had hypoparathyroidism and of these 77% had post- surgical hypoparathyroidism, 8% autoimmune, 1% congenital, 6% genetic or familial, 0.5% HDR, 0.2% CaSR, 4% pseudohypoparathyroidism and 3% other types (idiopathic, ADH2). Of the 29% of people with hyperparathyroidism 76% had primary hyperparathyroidism, 13% secondary hyperparathyroidism, 5% parathyroid cancer and 7% CaSR. 78% of all respondents also had other conditions.
More respondents of both conditions fell into the 45-64 age groups than any other. There were more hypopara patients in the 18 – 34 age group and more hyperpara in the 55-64 and 75+ age groups, otherwise numbers were fairly similar.
Most respondents live in England (81.09% ) with fewer in Scotland (8.06%), Wales ( 3.15%), N. Ireland (1.40%), ROI (2.28%) and UK members living outside UK & ROI (4.03%).
Vulnerability: self- perceived v actual status
Survey results confirmed a picture of considerable anxiety among our members about how Covid might impact them as people with an endocrine condition which was already affecting their health and making them feel vulnerable. This was reflected in the number of those who independently chose to shield (35%) despite not being classed as extremely clinically vulnerable (ECV). Only 11.11% of responders had received a letter confirming their ECV status and 12% received priority deliveries.
This categorisation has caused much concerned discussion in the support groups where members sought clarification about their status. The survey showed that 44% felt they should be classed as ECV and 56% didn’t but the comments showed a different story.
In hindsight I should have phrased the question differently as 256 people qualified their responses in the comments section as follows:
60% said they felt they should be classed as ‘extremely vulnerable’ and that they were very frightened and worried about what would happen if they caught Covid because
- a) they are already coping with unmanageable hypopara
- b) their calcium levels are always affected by infections or viruses
- c) of the known effect of Covid on calcium levels
- d) they have autoimmune hypopara
- e) they have other conditions compounding the problem
- f) they have poor GP management.
- g) Hospital admission likely but hypopara treatment wouldn’t be understood
- h) if CKD is on the ECV list, why isn’t hypopara?
‘Whenever I become unwell my calcium dips rapidly and symptoms flare up. Covid terrifies me because I feel that it’s symptoms in combination with low calcium symptoms would be quite life threatening.’
21% said no, they didn’t think they were ‘extremely vulnerable’ but 36% of these felt they were definitely clinically ‘vulnerable’ and should be classed as such. This included those who had previously been hospitalised with flu, who had fears about mental health if they were made to shield and worries about being managed by their GP.
‘I don’t think I am at more risk of catching Covid but I do recognise that if I do I may be more at risk of complications. I think ‘vulnerable’ might be more appropriate for me personally.’
17% were unsure. They didn’t feel they knew what might happen to them if they caught Covid or how vulnerable they actually are so felt unable to make an informed decision. 5 said they were very worried about this.
‘Not sure. I am extremely concerned about my body’s ability to fight Covid should I get it and how my calcium levels would be affected.’
‘Not sure – if Diabetics are extremely clinically vulnerable then we should be too. I do think being hypopara does make me clinically vulnerable but, perhaps, not extremely vulnerable. I’ve read published papers reporting hypocalcaemia during Covid in previously healthy people. Would hospital staff know how to treat Covid induced hypocalcaemia in a hypopara patient? My experience as a patient suggests that they wouldn’t. My kidney function is declining having been returned to normal during the Balance trial – was in stage 3 and might now be in stage 4 but no medical checks this year so don’t know. Not having any medical support makes me feel very vulnerable as well.’
‘My Endocrinologist stated that I wasn’t extremely clinically vulnerable but to be very careful and only go out when necessary.’
Even in November it was clear that there was still considerable confusion about their condition (do we have a poor immune system?) vulnerable status (if we have flu jabs then are we vulnerable?) work related issues and what to do if you felt ill.
Employment
27% had difficulties with work during this time, either being made to go into work when they felt they shouldn’t because they were not classed as vulnerable or needing to work and being unable to.
163 comments painted a picture of increased fatigue, stress and anxiety particularly among those with public facing jobs where reduced breaks, lack of water/breaks for meds and increased workload have taken their toll on symptoms. Others mention being exposed to greater risk, unsupportive employers, colleagues who ‘don’t believe in Covid’, increased workload but reduced hours and inadequate protective measures. Those trying to work from home with children also home learning were also very stressed. Most said that the stress and fatigue were continually impacting on their calcium levels which they had to self manage.
‘Boss refuses to acknowledge I have health issues as I am not classed as vulnerable’
‘I used to have definite breaks to eat and take my medication. We have a new timetable system so now I do not, so I am finding my levels varying a lot more.’
‘I work in a school so had to work as wasn’t told to shield. My anxiety is very high working in close quarters with hundreds of children and adults.’
‘Working as a nurse I am concerned about my risk of covid and the implications of contracting the disease. I am concerned that I have a number of underlying health conditions (hypothyroidism, asthma and hypoparathyroidism) and it is the mix of these that I feel makes me more vulnerable. I do understand that perhaps for each of these conditions alone not enough is known but there should be some attention given to those who perhaps have a greater disease burden and how that may also be a risk factor.’
Emotional Well Being
85.19% said they were very worried about becoming ill due to their condition and needing treatment.
63% felt that the stress of Covid had adversely affected their condition.
When asked how worried they were about getting Covid 26% were extremely worried, 43.19% quite worried, 21% not very worried and 8.14% not at all worried. More people were extremely worried in the hypopara group.
Since March, 17% had had to self- isolate and 12% had lost a family member or close friend to Covid.
‘I know that when I get ill with a virus, bacterial infection etc that my hypopara symptoms are all over the place and difficult to manage. I dread catching Covid 19 because of the effect it will have on my hypopara.’
‘I have autoimmune hypopara and I fear that if the immune system isn’t working properly then are we at higher risk from Covid or any other virus?’
Impact of Covid
25.44% responders felt they had had Covid symptoms at some stage and of these 30% called for help.
36.26% called the NHS helpline, 49.12% spoke to their GP and 23% spoke to their consultant.
3.75% tested positive.
Of the 160 people who reported having Covid 56.86 % were asymptomatic, 15% had mild symptoms (cough, fever), 24.3% had moderate symptoms (unable to get out of bed). 3.13% had severe symptoms (admitted to hospital) and 0.63% had very severe symptoms (in ITU).
Of the 10 people who had been admitted to hospital, the length of stay was 4 overnight, 2 for 1-2 nights, 3 for 3-6 nights and 1 for 3 weeks.
‘I caught Covid 19 in March 2020 and was in a coma in intensive care on life support.’
‘I caught Covid 19 at the start of the year and was extremely unwell for 6/7 weeks. Since Covid my thyroid bloods and parathyroid bloods have been erratic and out of range causing me to feel really unwell with extreme fatigue and exhaustion. I have never recovered 100% from Covid and ..it takes my body a lot longer to fight infections and recover than it did prior to having thyroid and parathyroid issues. I feel very vulnerable.’
Managing parathyroid conditions
Of the 502 people who answered this question, 406 (71.12 %) were able to get a calcium test, mostly at their GP surgery (52%) or hospital (endocrine or phlebotomy department). 3.45% went to A&E. 59.29% said they felt they would be able to contact their consultant in an emergency
35.15% didn’t seek help where they normally would have done and 15.42% of patients with hypoparathyroidism are running their calcium levels slightly higher than usual during the pandemic as recommended by our advisors.
77% were taking daily vitamin D3 supplements and 32% magnesium as recommended but 11.17% were finding it hard to get hold of their medication.
60% of responders were able to attend a planned appointment with their consultant. Of these, 14.31% were held face to face, 50% by phone and 4% online. 22% had their appointment postponed or cancelled. Appointments had not yet fallen due for 19% of responders at the time of the survey.
Of the 99 primary hyperpara patients expecting planned surgery at the start of lockdown in March 30% of surgeries had taken place by the time of the survey in November, of which 14% were on time and 16% were delayed. Surgery was postponed for 28% of patients and 43% were still waiting for an appointment.
‘I struggle to fight off infections and when I am ill it has a major effect on my Hypoparathyroidism. My levels drop and I struggle to recover.’
‘I was extremely poorly last year with flu, all my magnesium, phosphate, calcium levels caused me to spend 11 days in hospital on a heart machine … I am terrified that Covid will be worse for me.’
‘When I spoke to my consultant about COVID, he said I would probably need a calcium drip to recover properly and blood tests to prove low calcium are difficult to obtain.’
’Primary hyperparathyroidism causes damage to your body and weakens your ability to fight covid , PHPT causes end organ damage to internal organs and is a very debilitating illness.’
Limitations
This was only intended to be a quick survey to get a clearer picture of what our members were feeling and experiencing at this time. I hadn’t expected to get so many responses. Had I known that and had the questions, devised in too much of a hurry, had better acuity I might have had it properly analysed but as it stands this is just a basic summary using the survey monkey results[i] provided, to be used as a tool to help us develop further support and perhaps raise awareness about the issues affecting us at this time.
The questionnaire was anonymous so it was not possible to tell by email address if anyone had answered more than once but not all people answered every question. Some people answered both hypo and hyperpara questions which skewed numbers at first and others were very unclear about their own condition which flags up the need for more patient education.
Discussion
Anxiety is inevitable at this time but results and comments showed that people were less worried about actually catching Covid and much more worried about how they would cope if they did due to it’s potential impact on their parathyroid condition and general health. 85% of our responders were worried about the risk of becoming ill due to their parathyroid condition and then needing treatment in hospital. 63% reported that the stress of living in the pandemic was adversely affecting their condition and 25% were also struggling with issues arising around employment, isolation and home learning. Hypopara patients are without doubt experiencing added weight to the burden they already carry, in terms of their physical and mental health.
With so many concerned about the risk of being admitted to hospital with Covid, and the additional problems caused by calcium issues, a clear majority felt they should be classed as at least ‘vulnerable’ due to the risk of hypocalcaemia and the need for hospital admittance if they contracted Covid. Nearly half of responders (and two thirds in the comments) felt they should be classed as ‘extremely vulnerable’ for varying reasons while a third of those who didn’t qualified their responses by saying they should be in the ‘vulnerable’ category because they didn’t think they would cope very well if they had Covid.
This degree of ongoing uncertainty and confusion felt by patients shows the need for greater clarification and information and highlights how vulnerable we actually are. In March 2020, as no information was available for patients we asked our medical advisors to help us write our own. They decided that we were neither vulnerable nor extremely vulnerable (unless other conditions deemed us so) but that we should take vitamin D if we weren’t already and hypopara patients should run calcium levels slightly higher as accessing blood tests in a crisis may be difficult. This guidance[ii] was later published by the SfE[iii] on their website along with advice for clinicians on other endocrine conditions. In their Second Wave[iv] planning ‘severe or symptomatic hypocalcaemia and hypercalcaemia’ were included among the priority conditions in the acute at risk 25% capacity group (with stable hypopara and primary hyperpara in the 75% group) but this still does not make us ‘vulnerable’.
Despite this overriding anxiety (particularly among those who were on PIP and hadn’t received a shielding letter) patients were nevertheless well supported at home or on an outpatient basis. It is very encouraging to see that over 70% were able to get a calcium test during this period (probably more than usual) and 60% of responders were able to attend a planned appointment with their consultant. They were, by and large, able to access telephone appointments and online resources, local tests and medication (although some meds were in short supply). We know from our groups that many patients have still had to self- manage their medication (with our support) which confirms the need for the self-management strategies (and further research) recommended in the enormously helpful publication from Prof Gittoes et al which came out in August. [v] This warned that hypopara patients ‘may encounter more unstable levels during a Covid infection’ but that there was no data available, at that time, as to whether Covid is associated with hypocalcaemia.
Our survey shows that of those who had Covid over half were asymptomatic while the remainder reported moderate to very severe responses. Once a link between Covid and hypocalcaemia was eventually confirmed [vi] we had expected higher numbers of hypopara patients with Covid to have their calcium levels affected but numbers of members with Covid at that time were still quite low. However, since the survey ended we have had more reports coming in of many more members with Covid and many experiencing more difficulties with their calcium levels falling. This may possibly be due to the greater number of cases in general in January 2021. We are keeping a record. Nevertheless, the link between hypocalcaemia and Covid is of grave concern to our members. Will knowledge of the etiology make a positive difference or will those with already unstable levels have a poor outcome? And what about vitamin D? They still have many questions.
It would be useful to carry out another survey soon to look further into the symptoms and experiences of those parathyroid patients who have had Covid-19.
‘As a direct result of hypoparathyroidism I have impaired immune function;-increased risk of hospitalisation if unwell due to high chance of becoming hypocalcaemic;-increased chance of significant impact if develop ‘long Covid’ when already functioning at a severely reduced baseline due to impact of hypoparathyroidism. Many of symptoms being reported are similar to symptoms I deal with on a daily basis (fatigue, muscle pain, paraesthesia, cognitive effects) and very concerned that if was to develop long Covid. I would basically be unable to function Also, from a different angle it is impacting ability to adequately monitor my serum calcium/get the follow up I need.’
[i] https://www.surveymonkey.com/stories/SM-SG66DF32/
[ii] Coronavirus and parathyroid conditions FAQs, Parathyroid UK, March 2020
https://parathyroiduk.org/news/coronavirus-advice-for-people-with-hypoparathyroidism/
[iii] COVID-19 resources for managing endocrine conditions, Society for Endocrinology
https://www.endocrinology.org/clinical-practice/covid-19-resources-for-managing-endocrine-conditions/
[iv] Covid-19 Second Wave planning, SfE
https://www.endocrinology.org/media/3890/covid-19-second-wave-planning-2.pdf
[v] ‘Endocrinology in the time of Covid-19: Management of calcium metabolic disorders and osteoporosis’
Gittoes et al, Aug 2020 https://eje.bioscientifica.com/view/journals/eje/183/2/EJE-20-0385.xml
[vi] Prognostic value of hypocalcemia in COVID-19, Mikhail, Wali Sept 2020
https://www.oatext.com/prognostic-value-of-hypocalcemia-in-covid-19.php#Article