FAQs about thyroid disease and Coronavirus (Covid-19)

Since the outbreak of Covid-19, we have understandably received many enquiries from thyroid patients. Dr Petros Perros, BTF Patron and Consultant Endocrinologist at the Royal Victoria Infirmary, Newcastle upon Tyne kindly addresses some of the queries we have received about managing your condition at this time.

Q1. I have Graves’ disease and I take antithyroid drugs. I’ve received a letter from the NHS saying I am in the extremely vulnerable group and should therefore stay at home ‘shield’. This conflicts with the guidance from the BTF which states I am not at a greater risk. What should I do?

SHORT ANSWER

Patients with benign (non-cancerous) thyroid conditions are not on the UK Government’s list of people that are vulnerable and require shielding. Therefore as a patient with Graves’ disease who takes antithyroid drugs (Carbimazole or Propylthiouracil) it is unlikely that you will be on the shielding list. However, in your case there may be other reasons why you have been sent the letter and so it is essential that you contact your own GP to discuss the shielding advice. Your GP will have access to your full medical history and records and so will be in the best position to advise whether shielding is necessary. If your GP is unable to answer the question then you should seek clarification from your hospital specialist.

LONGER ANSWER

Patients with benign thyroid diseases are not included in the list of vulnerable individuals by the World Health Organisation [1] or the UK government [2]. Professional expert bodies like the British Thyroid Association and the Society for Endocrinology [3], the American Thyroid Association [4] and the European Thyroid Association [5] acknowledge that there is as yet insufficient information on how the Covid-19 affects people with thyroid disease. However, thyroid diseases are not known to be associated with increased risk of viral infections in general, nor is there an association between thyroid diseases and severity of viral infection. The available evidence comes from: (a) the collective experience and observations of numerous thyroid experts over many decades that point towards patients with autoimmune thyroid diseases not being susceptible to bacterial or viral infections any more than anyone else; (b) there is some indirect evidence from studies such as that by Journy et al, [6] who looked at causes of death of women with hyperthyroidism or hypothyroidism from cancer, heart disease, diabetes and all other causes, and found that there was no excess deaths from other causes such as infections; (c) a recent meta-analysis of articles relating to 656 patients with confirmed Covid-19 [7] (mainly from China but also including some from Australia); in none of these cases was there a mention of autoimmune thyroid disease as a comorbidity. The commonest comorbidities (the presence of one or more additional conditions) encountered were hypertension, cardiovascular disease, diabetes, chronic obstructive pulmonary disease, malignancies and chronic liver disease. There is some evidence that patients who have uncontrolled hypothyroidism (I.e. very high serum TSH) have impaired immune function, which upon correction with thyroid hormones returns to normal [8]. If you have one autoimmune disease (e.g. Hashimoto’s thyroiditis or Graves’ disease) there is a statistical probability that you may have, or develop, another autoimmune disease. Some other autoimmune diseases (for instance rheumatoid arthritis, especially if it affects organs like the lungs) do place people in a high-risk category, but that is by virtue of the other autoimmune disease rather than the thyroid condition.

It is not easy for any responsible body to make public recommendations relating to health when the available information is limited. In such a situation it is important not to lose sight of proportionality and to consider the consequences of being overcautious. In this respect even if there is an association between benign thyroid diseases and Covid-19 infection, the magnitude is likely to be very small and much smaller than some other associations which we seem to accept without questioning: for instance the data coming out of Italy [9] show that if you are female aged 50-59 years and contract Covid-19, you are 10 times more likely to have a fatal outcome than a 30-39 year old woman; and if you are a 50-59 year old man you are 3.7 times more likely to perish in comparison to a woman of the same age. Compared to the effects of age (even in the under 70s) and gender, any potential association between benign thyroid diseases and Covid-19 infection, is likely to be of little relevance for most people. If the official advice leans too much in favour of being overcautious, that can have a significant negative effect for some people, whose physical and psychological health may be compromised. In the UK and elsewhere detailed data are being collected and will be audited and analysed. Before long we may have more accurate information to base our decisions on. In the meantime the best way forward is to be well informed. By doing so we can become empowered to better interpret the advice given to us by experts and how it applies to our individual circumstances.

References

Q2. I was born without a thyroid (congenital hypothyroidism) and always grew up being told that it meant I had a weakened immune system. However, I have not received a shielding letter from the NHS. Is this something I should be chasing up or not?

The vast majority of people with congenital hypothyroidism do not have any problems fighting infection, although there is some evidence that if the hypothyroidism is not well controlled with medication, the susceptibility to infection can increase, but this problem is reversed when the hypothyroidism is treated properly [1]. There are some extremely rare genetic syndromes which cause multiple health problems including congenital hypothyroidism in which impaired immunity is present, but children that are in this category are born with severe health problems and it is very obvious that there is a lot more wrong with them than hypothyroidism, (such examples are immunodeficiency syndromes and the “brain-lung-thyroid syndrome” [2]). It must be terrible to be given conflicting information, and I am conscious I am doing just that. Not being a paediatric endocrinologist, I took the precaution of asking a highly experienced and knowledgeable colleague who is a paediatric endocrinologist (and has served as a trustee of the BTF in the past), who thought the same as me, and I conducted a literature search on “pubmed” and “google scholar” and I cannot find any evidence of weakened immune system in congenital hypothyroidism. So, I wonder if the information you were given may have referred to under-treated hypothyroidism (as indicated above there may be some truth in that), or perhaps it referred to an unrelated condition that causes impaired immunity. Perhaps the best thing to do is ask the specialist who is supervising your treatment this same specific question and if there is misunderstanding over this, it can be clarified. In the meantime you may find the answer to Q1 above of some use.

References

Q3. I’ve just found out I’m pregnant and have followed the guidance and increased my levothyroxine dose by 25mcg. I’m worried that because my GP surgery is currently so busy I won’t be able to get follow up blood tests. How will I know if I’m on the right dose? Will being on the wrong dose harm my baby?

SHORT ANSWER

Congratulations on your pregnancy! Having made the adjustment in the dose of levothyroxine by 25 mcg, you have done well. The first trimester is the most crucial stage of the development of the brain of the baby and you will have achieved optimal levels. GPs are still available for non-Covid-19 related problems and if there is a good enough reason blood tests can be performed. I am sure the GP and the midwife will be able to support and guide you over this. Even if the small dose increase in levothyroxine makes your thyroid gland slightly overactive this is unlikely to have significant adverse effects.

LONGER ANSWER

The requirements for thyroid hormone increase in pregnancy from 4-6 weeks and continue to gradually increase up to 16-20 weeks and then they stabilise until the baby is born [1]. The amount by which the dose of levothyroxine needs to be increased is to some extent dependent on whether you have any functioning thyroid tissue. Women who don’t (for example after total thyroidectomy or after radioiodine) are more likely to require greater increases than otherwise. A study [2] performed in the USA and published in 2010, showed that increasing the dose of levothyroxine by 28% at the time of confirmation of pregnancy, ensured satisfactory thyroid levels at least up to 30 weeks, without relying on thyroid blood tests. The information from this research may be useful to you in putting things into perspective and you may wish to discuss this with your midwife or GP. More information about pregnancy and the thyroid can be found in the BTF website [3]. Information about Covid-19 and pregnancy can be found on the Royal College of Obstetricians and Gynaecologists website [4].

References

Q4. I am due to collect a prescription for my thyroid medication next month. But usually my pharmacist will only let me do this when I have had my thyroid blood tests. My GP’s surgery is too busy for me to get my bloods done at the moment and I am worried that I’ll run out of medication.

It is, of course, a good idea to have an annual thyroid blood test if you are on thyroid medication, as the requirements can drift over time and the dose may need to be adjusted. I was so perplexed by your story that I contacted my friendly hospital pharmacist and he was equally surprised to hear that a community pharmacist will not dispense thyroid medication when the patient presents him/her with a script. I agree with you that ensuring that you do not run out of medication is very important. If a patient on thyroid medication feels otherwise well, the routine annual thyroid blood test can be deferred until the Covid-19 restrictions are lifted. I would suggest that you question this with the pharmacy and your GP practice, If you don’t get any joy, we would like to hear from you again.

Q5. I have an underactive thyroid and take levothyroxine. However, I don’t feel well at the moment and think that I might need my dose changing. Due to the current situation my GP surgery is very busy and I’m unable to get my thyroid function tests done. What should I do?

Thank you for submitting this important question. Many people with hypothyroidism will be sharing the very same concerns.

SHORT ANSWER

If you have been on the same dose of levothyroxine for a while; if you have had a thyroid blood test in the past while on the same dose which was fine, and if you have continued to take the tablets regularly without forgetting/missing doses, then it is highly unlikely that the dose needs changing. If there are good reasons to believe that something has changed, then it is possible to get blood tests via your GP. The NHS is not denying investigations or treatment to anyone if there is true clinical need. So, if you feel that is the case, then perhaps you should make contact with your GP about getting a blood test, but that has to be balanced against the risks of being exposed to people who you otherwise would not come into contact with.

LONGER ANSWER

Unfortunately relying on symptoms can be very misleading. The correlation between symptoms and biochemistry is poor unless you are extremely underactive or overactive. The Colorado Thyroid Disease Prevalence Study found that up to about 30% of normal people had one or more of 14 hypothyroid symptoms, only marginally less frequently that patients with hypothyroidism [1]. Another large study found that up to nearly 60% of normal people had one or more features of hypothyroidism [2]. A prospective randomised controlled trial [3] in patients with hypothyroidism had their dose of thyroxine altered so that the serum TSH changed over a range from 0.78 up to 9.5. These fairly large changes in blood tests had no impact on quality of life, mood, or cognition. So, trying to make sense of the thyroid status based on symptoms is fraught with significant difficulties. At the same time, it is totally understandable that patients with hypothyroidism will try and make sense of symptoms and it will be tempting to interpret them in the context of being hypothyroid.

References

Q6. Since my local surgery isn’t doing routine blood tests I’m thinking of paying to get some private online blood tests done. Will these blood tests be reliable and if they show I’m under or overmedicated will my GP or pharmacist be willing to rely on them to alter my dose?

I am sorry to hear that you find yourself in this position and many patients with thyroid disease will be sharing the same angst. I think the first question we should ask is: “Is a thyroid blood test really necessary at this point in time?”. Please see answer to Q5 above, which elaborates further on this. I have several concerns about private testing: (a) their charges are often excessive, for something that in reality costs “pennies” (b) some of the tests (especially those that rely on finger pricks) lack sensitivity and are next to worthless; (c) they may not be subjected to the strict quality regulations and controls that are operational in NHS labs by the UK NEQAS scheme [1]; (d) there is some lack transparency as to how they derive their reference range; (e) many laboratories push patients into having additional unnecessary and expensive blood tests. Certainly, I would suggest that if you are prepared to spend money on private testing, you as a consumer should be asking that lab to provide you with information such as: what quality controls do they use? Are they part of UKNEQAS, how do they derive their reference range, what is the inter- and intra-assay coefficient of variation and what is the sensitivity and specificity of their assays? I hope you will understand that, because of these unknowns, GPs and other health professionals are hesitant to rely on results of private tests, simply because of concerns about making wrong decisions based on unreliable information.

As mentioned above (in Q5) the NHS is not abandoning people who have a real need for tests or treatment.

Reference

https://ukneqas.org.uk/

Q7. I’ve been diagnosed with an overactive thyroid but cannot get a referral to see an endocrinologist because referrals are only being made to for urgent cases. I’m struggling with the symptoms (palpitations, tremors, sweating etc.) but my GP tells me the medication has to be started by an endocrinologist. What should I do?

I am sorry to hear that you have been diagnosed with hyperthyroidism at this time. In most places in the UK endocrinologists continue to receive, and are dealing with, newly diagnosed patients with hyperthyroidism. It is possible that in the parts of the country which are most affected by COVID-19, there may be difficulties. In the majority of cases endocrine consultations can be done effectively by telephone. In some cases, however, there is no absolute need to start medication, and I wonder if you fall in that category. For instance, “subclinical hyperthyroidism” is a condition when the blood tests are borderline abnormal and there is no good evidence that treating it benefits patients. Also, there are some forms of thyroid overactivity that correct by themselves (e.g. subacute thyroiditis, silent thyroiditis, post-partum thyroiditis) and it may be best to let nature take its course. Your symptoms would suggest otherwise, but the same symptoms can be due to lots of other causes and often enough, people without hyperthyroidism experience them. The British Thyroid Association and the Society for Endocrinology have produced guidance for health professionals on how to manage patients with an overactive thyroid during the Covid-19 epidemic, when access to specialists and blood tests may be difficult (https://www.british-thyroid-association.org/sandbox/bta2016/management-of-thyrotoxicosis-during-covid-19_final.pdf) and you may wish to bring this to your GP’s attention.

Q8. I had surgery a few years ago and had my thyroid removed. Am I at risk from the coronavirus because I don’t have a thyroid at all?

The consensus from official and expert sources is that there is no increased risk. Also please see answer to Q1 for more detail.

Q9. My seven-year old child has an underactive thyroid and I’m worried that their upcoming appointment with the specialist will be cancelled. He seems well at the moment – is it a problem if he misses this checkup?

Unfortunately, as a result of the COVID-19 situation, there is already an impact on paediatric services nationwide and the way the units are dealing with the additional pressure will vary depending on the local situation. Some clinics are doing telephone or video visits instead and most will have reduced blood tests to the absolute minimum.

If you are worried about an upcoming appointment you should phone your local teams (hospital or GP) to see what they suggest. Most patients will not come to major harm if their thyroid function is not checked or is delayed for a few weeks. If you do feel your child needs to be seen or investigated now, then you should discuss this with the local team as there will usually be a solution.

Q.10 I have recently noticed a lump in my neck which is particularly noticeable when I swallow. I’m worried that my GP won’t be able to investigate this properly because the NHS is so stretched at the moment and I’ve heard only urgent referrals are being made.

You should not be hesitant to bring this up to your GP. Health professionals and the NHS as a whole are conscious that the Covid-19 pandemic makes people less likely to come forward with symptoms that are unrelated to Covid-19, and we are trying to address this. If there is suspicion of a serious underlying cause for a symptom (and the new appearance of a lump in the neck fits the bill) then you should be investigated. Having said that, the odds stack up in favour of a symptom such as the one you describe not being anything serious (90-95% of thyroid lumps that present in this way are benign) and if one is unfortunate enough to be on the wrong side of the statistics, delaying the diagnosis by a few months is unlikely to make any difference [1]. However, for a small minority of people it will make a difference. So, the sensible thing to do is flag it up to your GP now.

Reference

Ming Li, Ricardo C. Marquez, Karyne L. Vinales, Peter D. Reaven, Gauri Behari, Ambujakshan Dildeep, and Sherman M. Harman. Clinical Thyroidology.Apr 2020.156-158.http://doi.org/10.1089/ct.2020;32.156-158.

Q.11 Will my poorly managed thyroid function make me more at risk to COVID-19?

Thank you for posing this important question. The stark reality is that far too many people with thyroid disease have suboptimal thyroid function at any one time. This is due to people not taking their medication regularly [1, 2, 3, 4], or being given the wrong advice by health professionals and sometimes a combination of the two. If there is good collaboration between patient and doctor, this unfortunate phenomenon would be much rarer. In the past two years, two large population studies have been published that have indicated excess mortality in patients with hypothyroidism if the serum TSH is persistently outside the normal reference range [5, 6].

There is indeed some evidence that people with hypothyroidism who are undertreated may be more susceptible to infection, but this seems to correct when the thyroid blood test return to normality [7]. People with severe thyroid overactivity may also be at risk of being pushed into ‘thyroid crisis’ by an infection, although this is a very rare occurrence. Otherwise there is no evidence that people with benign thyroid diseases are more at risk of Covid-19. I would say that the key part of your question is understanding the reasons why the thyroid function is managed poorly, and to address it effectively. There are many barriers, including mistrust in health professionals and misinformation in the media. Unfortunately, there is no lack of opportunists at this rather difficult time, who will try to convince you that you are very vulnerable because you have thyroid disease and they will offer you solutions; supplements, minerals, vitamins and potions, which leave you in exactly the same predicament as you were before. Beware!

References

Please note: This guidance is based on the opinion of Dr Perros and does not necessarily represent those of the BTF. This information is not intended as a substitute for taking advice from your own doctor or specialist as they will be best placed to advise you.

Further information

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