Hidden Illnesses That Take up to 30 Years to Diagnose

When you're ill, how quickly you feel better often depends on getting a diagnosis. But what if getting a diagnosis is a long and complicated process?

For some illnesses, it can take up to 30 years to get a diagnosis, leading to years of added pain and uncertainty for patients.

Here, we look at some of the most complicated illnesses to diagnose, and find out if you could have these hidden illnesses.

Type 2 Diabetes

Time taken to diagnose: 2.4 years

The diagnosis time has vastly improved with Type 2 Diabetes, as doctors are more aware of this insidious disease and are more alert about regularly checking blood sugars. This is especially the case in patients who present with the symptoms: increased thirst, frequent urination and tiredness.

However, there is still such a delay that 50% of patients will be experiencing a complication of Type 2 Diabetes by the time they are diagnosed, according to Diabetes UK. A diagnosis delay of three years increases your stroke risk by 22%.

I think I may have Type 2 Diabetes: If you have the symptoms - especially if you are overweight, over 40, have a close relative with the condition, or are of South Asian ancestry - see your doctor and ask for a blood glucose test.

Dementia

Time taken to diagnose: 4.5 years

Misdiagnosed as: Stress; depression; midlife crisis

Dementia causes changes in memory and concentration, changes in mood and personality, withdrawal from work and social activities, poor judgment and difficulty doing daily tasks. These symptoms can be easily confused with depression, and adults younger than 65 are frequently misdiagnosed as having depression for nearly five years when they are really exhibiting early signs of dementia.

Up to 5% of people with dementia experience Early-Onset Dementia, developing dementia in their 40s and 50s.

Younger adults tend to develop dementia that affects the front of the brain. This means that behavioural changes are more prominent than memory issues. Thus, when they go to their doctors, they are dismissed as being depressed, stressed or even suffering phase-of-life issues (a "midlife crisis") or relationship problems. While pills may be prescribed, these are commonly anti-depressants, which may improve low mood but will not prevent long-term decline.

Dementia is hard to diagnose, even in older-adults, who may have to wait two-and-a-half years for diagnosis.

I think I may have dementia: If you feel your personality is changing, especially if accompanied by other symptoms of dementia, always consult your doctor. And be persistent.

READ Studies Claim Green Tea is Very Effective in Preventing Cancer and Dementia

Hypothyroidism

Time taken to diagnose: 5 years

Misdiagnosed as: Depression; overeating; hormonal problems

Hypothyroidism occurs when the immune system attacks the thyroid, as a result of a lack of iodine, or due to thyroid cancer. One of the most common early symptoms of hypothyroidism is weight-gain. People will frequently gain weight without changing their diet, or even while eating less. Some doctors have been known to not even perform a thyroid blood test before they tell the hapless thyroid sufferer that all their problems would melt away if they ate "healthily".

However, overeating isn't the only misdiagnosis hypothyroid patients receive.

Many are misdiagnosed as depressed. This is because, over time, hypothyroidism causes symptoms of depression, including low mood, tearfulness, and anxiety. Other symptoms such as irregular periods, heavy periods, muscle cramps, and tiredness are frequently misdiagnosed as hormonal problems.

According to a survey of nearly 5000 hypothyroidism patients, conducted by Thyroid UK, 46 per cent were initially misdiagnosed with another condition, 46 per cent were correctly diagnosed within a year, and one-fifth it took five years or longer for a correct diagnosis.

I think I may have hypothyroidism: Ask your doctor for a blood test to check your thyroid hormone levels.

READ Hypothyroidism and the weight battle

Endometriosis

Time taken to diagnose: 7.5 years

Misdiagnosed as: Dysmenorrhoea (painful periods); IBS

Endometriosis causes misery for millions of women, every single month. It frequently starts with teenage girls, and is most commonly diagnosed at around the age of 25 to 40. Symptoms of endometriosis vary from person to person. Some have very minor symptoms, but many have debilitating symptoms that interfere with school, work and social lives.

Symptoms include: painful menstruation, heavy periods, pain in the lower abdomen, pain during intercourse, bleeding between periods, and difficulty getting pregnant. Endometriosis causes uterine tissue to grow on the organs of the abdomen. Depending on where the tissue grows, these symptoms can also appear: constipation, difficulty urinating, coughing blood (in rare instances that the tissue grows on the lungs), pain on going to the toilet, exhaustion.

Many doctors are initially reluctant to provide more than simple analgesia for what may be nothing more serious than "simple period pains". Ertan Saridogan, consultant gynaecologist at University College London Hospital says another problem is "There is...a lack of awareness among women and health professionals." Additionally, if the patient is a teenage girl, doctors may be understandably reluctant to perform the gold-standard investigation: laparoscopy.

In laparoscopy, small incisions are made in the abdomen, and a small camera is inserted under general anaesthesia. It is the only way to diagnose endometriosis.

It is important to diagnose endometriosis. Once diagnosed, there are treatments that can lessen the impact this condition has on your daily life. One option for treatment is hormonal therapy, such as the progestogen-only injection or pill.

I think I may have endometriosis: If you have these symptoms and they are making your life difficult during menstruation, consult your doctor.

Other Hidden Illnesses

Osteoporosis

Time taken to Diagnose: 10-20 years

Misdiagnosed as: Osteomalacia (weakening of bones caused by Vitamin D deficiency)

With osteoporosis, more bone is broken down than replaced, leading to fragile bones that break easily. The first symptom of osteoporosis is often a fracture. It usually takes at least three fractures before doctors question if the patient may have osteoporosis.

When someone - especially a post-menopausal woman, someone who has been prescribed a long-term course of steroids, or a person with Celiac Disease - suffers a break after minimal force, they should always be offered a DEXA or DXA scan (a bone-mineral density scan), which checks for osteoporosis or osteopenia (decreased bone-density, often the precursor to osteoporosis).

It's important that osteoporosis (and osteopenia) is diagnosed early. A hip fracture raises the risk of dying for three whole years after the fracture.

Early diagnosis means that treatment with specialist medication to strengthen bones (such as Risedronate), and potentially Calcium and Vitamin D if the patient is deficient. Early treatment means a reduced risk of future serious fractures.

I think I may have osteoporosis: If you have a fracture following a low-impact injury, such as stepping off a kerb, ask for a bone density scan.

Celiac Disease

Time taken to diagnose: 13 years

Misdiagnosed as: IBS; poor diet; anaemia caused by heavy periods

Celiac Disease affects 1 in 100 people, yet it is one of the hardest hidden illnesses to diagnose. In Celiac Disease, the body can't digest gluten (found in wheat, barley, rye and oats), and treats it like an invader, triggering an autoimmune reaction and causing damage to the intestine.

Symptoms include anaemia (caused by not being able to digest nutrients), malnutrition, fatigue, abdominal pains, bloating and flatulence, and diarrhoea,

One of the problems is that many adult Celiac patients display with very few, often understated, abdominal symptoms. Celiac adults tend to me more affected by anaemia. This means that their mild bloating can be dismissed as IBS, and thought unrelated to the chronic anaemia.

According to Sarah Sleet of Coeliac UK, the problem is that "We have a generation of family doctors who think that if someone has coeliac disease they will have gut symptoms - but the most common symptom is anaemia."

Fortunately, once diagnosed, the treatment is easy. A complete, lifelong diet free of wheat and gluten will lead to you recovering your health and vitality in a period of six months. Even if you don't have gastrointestinal symptoms, continuing to eat gluten will cause serious long-term complications.

I think I may have Celiac Disease: A simple blood-test will detect antibodies to gluten.

READ Celiac Disease Vs. Non-Celiac Gluten Sensitivity

Hepatitis

Time taken to diagnose: 20-30 years

Misdiagnosed as: Fatigue

Hepatitis C is a virus passed on through infected blood, such as by blood transfusions given before 1991 (when screening began in the UK), or through dirty needles or unsterilised medical equipment. The virus replicates in the liver, and - beyond the early stages - the liver can no longer repair the damage.

One in three people with Hepatitis C have the early symptoms: chronic tiredness, joint pain, and brain fog. However, it's common to be infected for 30 years before being diagnosed. That's partly because it's only in the later stages when symptoms worsen, leading to: nausea, abdominal pain, yellow skin, and itching.

Untreated Hepatitis C will reduce your life expectancy by a decade.

I think I might have Hepatitis C: If these symptoms are ringing bells, ask for a blood test. This is especially important if you had a blood transfusion anytime before the late 1980s, or have had medical treatment abroad, not only in high-risk countries (such as Pakistan or Egypt) but anywhere.