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Living with Hashimoto’s Thyroiditis

Thyroid. The autoimmune disease Hashimoto’s thyroiditis seems to be ever more widespread. Do we enact treatment too soon, too often – and possibly for the wrong patients?

Tired? Exhausted? Often lacking in concentration? Maybe you have also gained some weight? ‘Let a doctor look at your thyroid gland! A friend of mine felt the same, and she was later diagnosed with Hashimoto’s.’ That or something like that might be the advice you get from your extended family or your circle of friends.

Hashimoto’s – officially known as Hashimoto’s thyroiditis and sometimes also called chronic lymphocytic thyroiditis or autoimmune thyroiditis – is an autoimmune disease leading to an inflammation of the thyroid gland. One’s misguided immune system attacks its own thyroid tissue; the gland eventually produces less hormones leading to a chronically underactive thyroid.

Until a few years ago, many people had not even heard of the thyroid disease. In 2013, however, TV presenter Vanessa Blumhagen wrote a book about her life with Hashimoto’s: ‘Every day I became fatter and more tired’ (‘Jeden Tag wurde ich dicker und müder’).

By now, there are numerous guidebooks with advice for those affected by the disease. The media also describe Hashimoto’s as a new mass phenomenon. Some experts even criticise an alleged ‘Hashimoto hype’.

Has the number of Hashimoto cases really increased? And how badly do those affected by it suffer? How is Hashimoto’s thyroiditis treated?

It is not easy to ascertain how many people in Germany suffer from it. What seems certain: The chronic disease is the most common reason for an underactive thyroid. But German medical guidelines also state that there are no representative data concerning the number of Hashimoto cases.

At least 4.1 million people take thyroid hormones in Germany, according to the 2016 medical guidelines. As with other ailments leading to an underactive thyroid, Hashimoto’s thyroiditis is mostly treated with a synthetically-produced hormone called levothyroxine, usually shortened to L-thyroxine.

No Data on the Number of Hashimoto Cases in Germany

‘According to our estimates, about two per cent of the German population suffer from Hashimoto’s thyroiditis’, says Dr Joachim Feldkamp, head physician for internal medicine, endocrinology and diabetology at Bielefeld Hospital.

‘Women are affected ten times more often than men.’ That would mean about 1.66 million Hashimoto patients in total. If you search the net, however, you can find estimates of up to ten per cent of the German population, which would amount to over eight million sufferers.

Just in comparison – about 7.2 per cent of the German adult population suffers from diabetes. If ten per cent for Hashimoto’s were true, that would put it well ahead of diabetes in numbers. Feldkamp, however, does consider those Hashimoto estimates far too high.

In order to understand these vastly different estimates, one has to look at how doctors arrive at a Hashimoto’s diagnosis. They look at four factors: the TSH level, the types of discomfort, ultrasonic test results, and antibodies in the blood.

The thyroid-stimulating hormone (TSH) enables the thyroid to produce hormones. If the gland is working below par and thus produces less hormones, the pituitary gland at the base of the brain releases more TSH. A high TSH level thus indicates an underactive thyroid.

‘A level of over four is considered high but does not necessarily prove an under-function leading to discomfort’, says Feldkamp. The German Society for Nuclear Medicine estimates a normal TSH level to be between 0.4 and 4.0 mU/l.

Older or overweight people often have higher levels – without the symptoms of an underactive thyroid. ‘At a level between four and ten, you do not necessarily have go for treatment, unless there are other discomforts’, says Feldkamp. Also, a once-off increase in the TSH level might not mean anything.

TSH blood tests are simple and not too expensive. If there are signs of a malfunction of the thyroid, the health insurers pay for it. So, many general practitioners use it if they think it a medical necessity. ‘That makes it difficult’, complains Feldkamp. It would be more important to look out for any other symptoms a patient might have.

The discomforts caused by Hashimoto’s thyroiditis are manifold but not unambiguous. Initially, there might even be side-effects similar to those of an overactive thyroid. Feldkamp says: ‘An inflamed thyroid gland initially emits more hormones than normal. Sweating, palpitations and nervousness can be the result.’ Once the thyroid emits less and less hormones in due course, the typical symptoms are tiredness, listlessness, weight increase, constipation, brittle nails or split hair.

Professor Petra-Maria Schumm-Draeger has observed that particularly young women often think of the thyroid first when they have one or another of these symptoms. ‘I think it is only right and appropriate that we take a good look at the thyroid more often today.’ At the same time, the Munich-based specialised consultant for internal medicine, endocrinology and diabetology points out that all the symptoms might also point to a totally different disease.

The Quick Solution: Pills

Even if the TSH level is only slightly higher than normal, many patients immediately start taking thyroxine hormone tablets – even though the reason behind a higher TSH level might not necessarily be Hashimoto’s. Also important for the diagnosis are the typical antibodies in the blood (anti-TPO and anti-Tg).

If these are found in a blood test, if the TSH level is higher than normal, and if other symptoms occur, than there is a good possibility it might be Hashimoto’s. However, the antibodies alone are no sure indication of the disease.

‘People without a thyroid disease sometimes also haven the antibodies in their blood’, says Feldkamp. That is his explanation for some of the very high estimates of the number of alleged Hashimoto patients in Germany. ‘However, there are no authoritative data to prove that the disease is on the increase.’

The ’Study of Health in Pomerania’ (SHIP) conforms Feldkamp’s findings. For the SHIP study, the blood test results of about 4,000 people in North-East Germany between 1997 and 2001 were compared to blood tests taken between 2008 and 2012. The conclusion: The number of people with antibodies remained constant over the years.

Moreover, the determining factor in a Hashimoto diagnosis is a last component: an ultrasonic test. ‘With Hashimoto’s thyroiditis, you do not see the butterfly-shaped gland evenly grey, but with darker blotches that show the inflamed areas. In addition, the thyroid diminishes in size due to the damage to the tissue’, says Dr Gesche Wieser of the Organisation of German Nuclear Physicians.

The experts agree: Hashimoto’s thyroiditis is getting more and more attention. ‘Not least due to the mass media and the internet’, says Feldkamp. Wieser concurs: ‘The thyroid is in the spotlight. From a medical viewpoint, but also for the patients.’

Endocrinologist Schumm-Draeger sees huge advantages: ‘The patients get the correct diagnosis much faster.’ Today, it happens more rarely that a patient is wrongly treated for depression or burn-out because the thyroid has not been examined.

More frequent in some families

If Hashimoto’s thyroiditis is suspected, then not only the blood and ultrasonic test results and individual discomforts ought to be looked at. As important are underlying health conditions, genetic predispositions, and personal circumstances, advises Schumm-Draeger.

It seems certain that the autoimmune disease occurs more often in some families than others. Quite often, the onset of Hashimoto’s happens during phases of hormonal upheaval like puberty, childbirth or menopause.

Excessive iodine intake has often been mooted as a cause for the disease. ‘But there is no evidence that too much iodine causes the disease or makes it worse’, says Schumm-Draeger. She considers a regular diet with iodised salt and sea fish once so often rather unproblematic.

Just why the immune system suddenly attacks its own thyroid with Hashimoto’s is still unclear. The underlying malfunction of the immune system cannot be treated yet. With hormone medication, however, the underactive thyroid can be counter-balanced. It may be a chronic and incurable disease.

But Schumm-Draeger reassures the patients: ‘Don’t be afraid. Properly adjusted with thyroid hormone medication, Hashimoto’s neither confines the quality of life nor the life expectancy.’

Nevertheless, it is sometimes a little difficult to identify the right hormone dosage. ‘It can take a couple of months before the thyroxine dosage is properly adjusted and the discomforts have subsided’, says Schumm-Draeger. She advises regular check-ups, initially about every three months. Once the patient is happy with the hormone dosage, a check-up once a year should suffice.

Thyroid Hormones to Lose Weight?

The individual TSH feel-good level varies. Schumm-Draeger has also observed: ‘Women especially try to get treated almost into an overactive thyroid hormone level’, hoping to lose some weight. ‘But an overdosage can be dangerous’, she adds.

Studies in Great Britain and the USA have shown that about twenty per cent of those treated with thyroxine had a TSH level lower than normal. But a low TSH level is problematic especially for older people. It can drive blood pressure and the pulse up, and thus also increasing the risk of cardiovascular diseases like a stroke or a heart attack, according to Schumm-Draeger.

And a Treatment without Hormone Medication?

Once the thyroid level is well-adjusted, but the ailments do not disappear – or new ones even do appear – the doctors treating the patient have to find out what else is behind the discomforts.

‘Hashimoto’s crops up noticeably more often in combination with other autoimmune diseases’, says Schumm-Draeger. Vitiligo, atrophic gastritis, coeliac disease, or type 1 diabetes occur regularly with Hashimoto patients. Therefore, they ‘should be treated by doctors who are well versed in hormonal and autoimmune diseases’, says Schumm-Draeger.

Nuclear physician Wieser often consults with female patients who are rather unhappy about taking thyroid hormones for the rest of their lives. They inquire if micronutrients like selenium, vitamin D or zinc could improve their health status.

‘There are hardly any reliable studies’, says Wieser. For selenium, we have the best data, she adds. ‘Taking it might make sense in some cases.’ However, selenium should only be taken after medical consultation.

Many Hashimoto sufferers also try and change their diet in order to improve their situation. Some forgo wheat, others go for an absolutely gluten-free diet. ‘Many totally overact’, Wieser observes. She recommends a gluten-free diet only for patients suffering from coeliac disease.

There was no special Hashimoto diet, she adds, although some guidebooks make that claim. But for sure: A varied, balanced and vitamin-packed diet combined with plenty of exercise can help Hashimoto patients to feel much better.