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Case Studies - Dangers of
Untreated Autoimmune Thyroid Disease

sharing storyWe are collecting case studies from people who have become well through taking thyroid medication, and from people who are still suffering symptoms of thyroid disease despite taking thyroid medication.

If you would like us to use your story as a case study, you can submit it to us online here

Dangers of Untreated Hashimoto's Disease

It is common knowledge that Hashimoto’s thyroiditis is an autoimmune thyroid disorder. It is generally understood by our GPs and the endocrinologists who treat (or don't treat) this condition that, if a person has a diagnosis of Hashimoto’s it is very possible there could also be other autoimmune conditions presenting at the same time.

A person with diagnosed Hashimoto's would be showing positive for raised antibodies in any blood tests they had done. However, being a thyroid condition, blood tests which were designed in the 70s using healthy participants are also routinely carried out to measure how the thyroid functions. Patients would be tested for TSH, Free T4, T3 (if very lucky) and reverse T3. Your GP would also ask for a full blood panel consisting of tests for liver function, diabetes, anaemia, vitamins B, C, D and adrenal function.

A person with a diagnosis of Hashimoto’s would present with almost all the symptoms of a person with hypothyroidism (underactive thyroid).  Below are just a few:

    • fatigue, exhaustion
    • feeling run down and sluggish
    • depression
    • difficulty concentrating, brain fog
    • unexplained or excessive weight gain
    • dry, coarse and/or itchy skin
    • dry, coarse and/or thinning hair
    • feeling cold, especially in the extremities
    • constipation,
    • muscle cramps
    • increased menstrual flow, more frequent periods, infertility/miscarriage

They may even have other less common symptoms or even a combination of hyper and hypothyroid symptoms.

A person suffering from Hashimoto’s disease and, in most cases hypothyroidism, will have discovered that there are "Three Magic Words", these are: “within normal range”. 
This is referring to the fact that most Hashimoto sufferers and those who are hypothyroid usually have test results that state their thyroid hormone levels are within the normal range.

This is a catch 22 situation where GPs and consultants rely solely on the results of standard blood tests, rather than treat the whole person, based on the symptoms they are suffering. A person with Hashimoto’s definitely has a less than average life quality. It is because of these out-dated tests that Hashimoto’s disease, and unfortunately hypothyroidism, often go untreated and other alarmingly life-threatening complications can and do appear.

There are so many unfortunate individuals out there who are suffering needlessly because doctors and consultants put their faith in out-dated testing rather than their own clinical knowledge and refuse to treat these conditions.

I am a Hashimoto’s sufferer and like many thousands it has taken a very long time to get a diagnosis. In my case it has been 18 years.

My Hashimoto’s disease started after the birth of my son, where thyroid nodules were found under ultrasound. I got the diagnosis on 9th January 2012, which was made by an ENT specialist and I finally got an appointment to see an endocrinologist 3 months later on the 23rd March 2012.

He examined me, asked me about family history of thyroid disease and asked me what symptoms I have. I gave him a written letter explaining everything to him, including a very strong family history, symptoms and how this illness was affecting my life. He looked at it and arranged some blood tests and a 24 hour urine test. I had the blood test done on the following Monday, the 26th.

I was so unwell at my appointment, and afterwards at home, that on Tuesday 27th, I had to go to see my GP.

I did not see my normal GP on that Tuesday, I saw a locum. I explained to him about my Hashimoto’s but also about these new/ different symptoms that had come on out of the blue.  In hindsight, I think I was unwell for around 4 weeks prior to my endocrinologist appointment and when I say unwell I am referring to these new symptoms that had started.

These symptoms were excessive thirst, extreme joint pain, no appetite, pain in upper right abdomen, extreme fatigue (worse than the normal with Hashimoto’s), yellowing of my eyes, very bad jaundice, nausea, vomiting and itching. He wanted some blood tests done but I informed him I had some done the day before, which were ordered by the endocrinologist. He took a urine sample and contacted the pathology department at the hospital for my results. He found that my antibodies were in the thousands and my liver function tests were very abnormal.

I was sent directly from my GP surgery into hospital 4 days after finally getting an endocrinology appointment. My bilirubin level was 200 (50 - 60 is normal); ALT was 844; ALP 207; ALB 34 (liver function tests) - all very abnormal results.  Since starting treatment these are improving.

I am writing this to get a very important message out there, not only as a warning to those suffering from Hashimoto’s disease but also as a request to GPs and endocrinologists to listen to their patients more because there are thousands out there who are not listened to and as a result they do not get the treatment they need. Some go back and forwards to their GPs with the same symptoms year after year, as I have, getting treated for everything under the sun except the underlying cause; Hashimoto’s or hypothyroidism.

In fact, we often give up and settle for a lower quality of life because we begin to believe we are hypochondriacs. Many are told they have a mental illness and are treated with antidepressants, which only makes the situation worse.

I have spent the past 17 days in hospital and after many different tests, a stent was surgically fitted into my bile duct to ease the jaundice, intravenous antibiotics and other tests, it has been decided that I have autoimmune hepatitis, which is a secondary and very serious complication of untreated Hashimoto’s disease.

My antibodies are in the thousands and have suddenly decided they do not like my liver. I have never felt so debilitated and uncertain in my entire life I and am now taking steroids and immuno-suppressant tablets, probably for the rest of my life, to control this condition. It is controllable but if left untreated my condition could lead to complete liver failure somewhere down the line.  What I am certain of is that I will fight this and helping others become more aware is a part of my healing.

I am now most definitely disabled, the fatigue is unbearable and I can't walk very far. Basically, I can't do much of anything I used to do and unfortunately, as with many illnesses, I expect that even though I am disabled I will not be able to get any help from anywhere.

I went to see the liver specialist yesterday. My liver biopsy is positive for autoimmune hepatitis, but I also have an overlapping autoimmune condition called primary, billiary cirrhosis. I now have three autoimmune conditions but the positive thing is that there’s no scarring yet.

I am pleading with everyone on Thyroid UK, as much as worldwide to ensure that you have regular testing for liver function; especially your bilirubin, ALT, ALP levels alongside your regular thyroid function tests and please go to see your GP if you have a sudden onset of newer symptoms, especially any that I have included below.

Autoimmune hepatitis is a disease in which the body's immune system attacks liver cells. This causes the liver to become inflamed and, if left untreated, could lead to cirrhosis of the liver.

Autoimmune hepatitis symptoms include:

    • fatigue
    • excessive tiredness
    • not feeling very hungry
    • nausea or vomiting
    • diarrhoea
    • low-grade fever
    • muscle pain
    • joint pain
    • sore throat
    • mild stomach pain (or abdominal pain)
    • jaundice (yellowing of the skin or the whites of the eyes) may also occur along with dark urine
    • abdominal pain (or stomach pain) on the right side
    • light-coloured stool
    • itching
    • acne
    • arthritis
    • lack of menstrual bleeding.

It is very important that people are aware of the less than usual complications of untreated Hashimoto’s disease. It is now time for medical intervention to develop newer methods of testing for Hashimoto’s, as well as researching and finding treatments specifically for this disease. I am living proof that it is very dangerous, if left untreated.

Please listen to your patients and what they are saying to you about their symptoms. We are individuals and as such our bodies need different things, it's not a simple case of one size fits all.

I will end by saying that I am so grateful for the care given to me whilst in hospital.  We often don't understand how valuable our care services are until we have to depend on them for our own well being.

13/04/2012