Living better with hypothyroidism Being diagnosed with hypothyroidism can be an immense thing to come to terms with. Firstly, there’s often relief at finally receiving an explanation for the host of symptoms, which can creep up on you over the years. Then there’s possibly eagerness to start medication to help relieve symptoms and improve your health and wellbeing. This can be followed by the realisation that this is usually a lifelong condition requiring daily medication. In short, it’s something that’s now part of you. Our members frequently tell us ‘I wish I had known about this at diagnosis!’ or ask ‘Is there anything I can do myself to help manage my symptoms?’ Whilst there’s sadly no magic bullet, we do know there are certain things that can help us to manage our condition on a day-to-day basis. These are some of the top things that can be helpful to know when living with hypothyroidism: It makes a difference how you take your medication Levothyroxine is best taken in the morning, with water, on an empty stomach, at least half an hour before eating and drinking. Certain medications and supplements can also affect how well the body absorbs levothyroxine. For this reason, you should take your levothyroxine at least four hours apart from calcium, iron, cholesterol-lowering drugs (cholestyramine, colestipol) and multivitamin tablets. We advise you ask your GP or pharmacist for more information and ask about possible interaction between levothyroxine and any other drugs you’ve been prescribed. You should also not stop or alter the way you are taking any other prescribed medication without discussing it with your GP first. Store your levothyroxine carefully Levothyroxine loses its potency over time and should be stored at room temperature away from moisture, heat and direct sunlight. Taking your medication consistently really matters Taking your levothyroxine each day is very important. Forgetting to do this is one of the main reasons why people don’t feel well and is unfortunately very common. For example, a US study found that up to 1 in 2 people do not take their levothyroxine regularly (Ladenson 2002, Hepp et al, 2018). Taking medication inconsistently can also make it difficult for your doctor to get a true picture of your health. For example, if you have been missing your dose regularly, your blood test results will make it appear you are on the wrong dose. Your doctor will then likely increase your dose when in fact the problem is not the dose but taking medication inconsistently. This can lead to a vicious cycle and make it harder to maintain your wellbeing. Of course, remembering to take a pill every day for life can be a challenge. Many find having simple systems in place, such as setting a reminder on your phone and using a pillbox or medication organiser helpful. Not only do these help you remember to take your medication, they also ensure you receive your medication consistently. If you forget to take the occasional dose, it won’t make an immediate difference as your body has a big reservoir of levothyroxine. However, you should take the dose as soon as you remember and try not to miss doses too often. You won’t feel better immediately People often feel their levothyroxine is not working as they don’t feel better immediately after starting on their dose. This is because thyroxine is a slow-acting drug. So, it may take several months for your symptoms to reduce. If your Thyroid Stimulating Hormone (TSH) level was very high before starting treatment with levothyroxine, unfortunately, it may take longer for you to feel well again. Remember, if you have had a change of dose, it may also take a little while for you to feel the benefits. So, a little patience is required. For this reason, blood tests are not usually offered until three months after starting/changing your dose as your thyroxine levels will still be adjusting. Usually, your TSH will be measured every three months until the level has stabilised and then every 12 months after that. Be aware of certain foods and drink Caffeine can stop your body absorbing levothyroxine properly so it does not work as well. So, you should wait at least 30 minutes before having a drink containing caffeine, such as tea or coffee. Grapefruit, certain calcium-rich foods and soya are also known to inhibit the absorption of levothyroxine. Again, these should be consumed at least four hours apart from taking levothyroxine. Kelp is very rich in iodine and should be avoided altogether. Nori, the form of seaweed found in sushi, is fine though. Brassicas (cabbage, cauliflower, kale etc.), on the other hand, are OK to eat in moderation. Whilst they may contribute to the formation of a goitre, you would need to eat them in huge quantities, and generally in their raw state, to have an impact on the thyroid. You may feel better on some brands than others Levothyroxine is made by several manufacturers and your pharmacy may not always supply you with the same brand. Some people report feeling better on one brand than another. The reasons for this are unclear although it might relate to the different fillers and bulking agents used by the different manufacturers. You can look up the list of ingredients in each UK licensed levothyroxine brand on the Electronic Medicines Compendium (EMC) (see link at end of article) or ask your pharmacy to help. If you do experience persistent problems when switching between brands, the revised UK Medicines and Healthcare products Regulatory Agency (MHRA) prescribing guidance for levothyroxine allows healthcare professionals to consider consistently prescribing a specific formulation known to be well tolerated by the patient. If you would like to report side-effects of any medication, you can do this via the government’s Yellow Card scheme Regular blood tests are important Once your TSH levels have been established, you will usually be offered a blood test every 12 months to monitor your levels. Not all GP surgeries will call you for blood tests so it’s a good idea to try and keep a record of your last blood test and request one if your GP has not called you for it. It’s also a good idea to request a copy of your blood test results to keep track of levels and what are optimal readings for you. Changes in weight might mean your dose needs altering Your levothyroxine dose is often calculated according to your body weight. So, if you have any significant changes in your weight, it is advisable to have your bloods tested to see whether you require a change in dose. The menopause can affect your levothyroxine dose Due to declining levels of oestrogen around the time of menopause and in postmenopausal women who are not prescribed HRT, some women may require their levothyroxine dose reducing. Keeping a diary may help A diary is not only helpful to record your blood test results and medication levels. As some symptoms develop over time, it’s sometimes hard to remember when they first develop or how they impact you. So many people also find it useful to keep a note of how they’re feeling at certain times and also to jot down what else is going on in their lives at the time. This may help you to recognise certain things that you can do to help you manage your condition better. For example, you may notice that a change of routine may affect your energy levels or that socialising with others improves your mood. Biotin can give a false blood test reading Biotin (also known as vitamin B7) is used in many cosmetic products, as well as supplements, to promote hair and nail growth. Although its benefits are anecdotal, it is understandably popular among people living with hypothyroidism to address these issues. The daily recommended intake of biotin for an adult is 30mcg but many biotin supplements marketed for cosmetic reasons contain much higher doses, ranging from 5,000mcg to 10,000mcg. We recommend you be aware that these mega doses of biotin can sometimes result in false TSH, FT4 and FT3 levels giving a reading which suggests an overactive thyroid (hyperthyroidism). If you are taking biotin supplements the American Thyroid Association advises avoiding these at least a couple of days before having blood tests to minimise the risk of a false reading. It is also advisable to let your doctor know you have been taking these, or any other supplements, when going for your blood test. Your hypothyroidism needs to be managed differently in pregnancy and conception If you’re planning a pregnancy or are pregnant, your dose of levothyroxine will need adjusting to ensure your TSH is at the right levels. This is because thyroid disease, if undiagnosed or uncontrolled, can make it harder to conceive and can cause problems during pregnancy. Doctors will adjust your dose to try and achieve an optimal TSH reading of 2.5 mU/l in conception and for the first 12 weeks, and less than 3.0 mU/l throughout the remaining pregnancy. Breastfeeding is safe while taking levothyroxine. Thyroid conditions can affect your emotions too The psychological symptoms of thyroid conditions sadly often go unrecognised. Fortunately, in the great majority of cases, psychological symptoms improve as the thyroid disorder is brought under control by treatment (if the thyroid is the cause of the problem). But this improvement may not be as rapid as you hope. So it's common for people to feel emotionally and mentally ‘not quite right’ for some time even after blood tests return to normal. We understand that this can be isolating and sometimes make you feel that no-one understands. Many people find it helpful to discuss their feelings with those close to them. Alternatively reaching out to others who have had similar experiences via patient support groups or telephone helplines, like those we offer, can be helpful. If you still feel unwell despite normal blood test readings Taking your medication and having regular blood tests may not be enough in itself to make sure you feel well all of the time. If you’re doing those things and still don’t feel well, it’s important to make an appointment with your doctor to discuss your symptoms with them. Your doctor may consider adjusting your dose to achieve optimal wellbeing but avoids you becoming overmedicated. Your doctor may also wish to look into other possible causes of your symptoms, such as anaemia, coeliac disease or vitamin D deficiency. If these have been ruled out you should ask your GP to consider referring you to a thyroid specialist who will be able to investigate further. For example, in exceptional cases combination therapy of levothyroxine and tri-iodothyronine (LT4 and LT3) may be considered as an experimental approach under the supervision of an endocrinologist but LT3 is not always available on the NHS. Further information and support NICE guidance on the assessment and management of thyroid disease MHRA prescribing guidance on levothyroxine EMC list of levothyroxine medicines MHRA Yellow Card scheme BTA statement on the management of primary hypothyroidism 2015 Article on thyroid disease and the menopause Psychological symptoms and thyroid disorders This article appeared in our February 2021 BTF member magazine, BTF News. It has been produced to help patients make informed decisions about their treatment. There is a wealth of advice published on the internet but often it is confusing and misleading and the BTF believes that hypothyroid patients have the right to know what this information is based on and how reliable it is. This updated statement sets out the references to the research it is based on, and also a guide to the strength of the recommendations made and the quality of the evidence used.