Dangers of Untreated hashimotos Disease

Hi All, This is my blog which I posted on thyroid uk to warn everyone about the hidden dangers of untreated hashimotos and throid diseases. Just wanted to share it.


Dangers of Untreated Hashimotos Disease

It is common Knowledge that Hashimotos Thyroiditis is an autoimmune thyroid disorder. It is generally understood by our Gp's and the endocrinologists who treat (or don't treat) this condition that if a patiant has a diagnosis of Hashimotos, 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 70's 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) reversed 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 hashimotos 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 patient suffering from hashimotos disease, and in most cases hypothyroidism will have discovered that there are "Three Magic Words"; these are WITHIN NORMAL RANGE.

This is refering the fact that most hashimotos sufferers and notwithstanding hypothyroid, usually have test results that state their thyroid hormones are within the normal range. This is a catch 22 situation where Gp's and consulltants 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 hashimotos definitely has a less than average life quality. It is because of these out dated tests that hashimotos disease and unfortunately hypothyroidism often goes 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 hashimotos sufferer and like many thousands it has taken a very long time to get a diagnosis. In my case it has been 18 years. I finally got an appointment to see an endocrinologist on the 23rd of March 2012. He examined me, asked about family history of thyroid disease, asked me what symptoms I have. I gave him a written letter explaining everything to him including 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 which was the 26th. I was so unwell at my appointment and afterwards at home that Tuesday 27th, I had to go to see my GP.

The reality of other serious complications.

I did not see my normal gp, I saw a locum. I explained to him about my hashimotos, 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 endo 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 hashimotos, yellowing of my eyes, very bad jaundice, nausia and vomiting. 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 endo appointment.

I am writing this to get a very important message out there not only as a warning to those suffering from hashimotos disease, but also as a request to Gp's 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. I have spent the past 17 days in hospital and after many different tests, a stint surgically fitted into my bile duct to ease the jaundice, intravienous antibiotics and other tests it has been decided that I have Autoimmune Hepatitis which is a secondary but very serious complication of untreated hashimotos disease. My antibodies are in the thousands and have suddenly decided they do not like my liver. I have never felt so debilitated in my entire life, and am now taking steroids and immunosupressant tablets probably for the rest of my life; not forgetting that if utreated my condition can lead to complete liver failure and there is also the possibility I may have to have a liver transplant. Unfortunately as with many ilnesses, I expect that even though I am disabled, I will not be able to get any help from anywhere.

I am pleading to everyone on thyroid uk as much as world wide to ensure that you have regular testing for liver function; especially your Bilirubin levels; alongside your regular thyroid function tests and please go see your Gp if you have a sudden onset of 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 (hepatitis simply means inflammation of the liver).

Autoimmune hepatitis Symptoms



Fatigue
Excessive tiredness
Not feeling very hungry
Nausea or vomiting
Diarrhea
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-colored stool
Itching
Acne
Arthritis
A lack of menstrual bleeding.

I also have since been informed that I have Primary Biliary Cirrhosis as well. Symptoms of these three diseases are similar in many ways and on each day I have no idea which is to blame. Singularly these conditions are debilitating in every sense of the word, but combined life quality goes out the window. I feel I have no control over my own body, and I get more bad days than good. I am informed by my Gp that having these is a bit of bad luck (his exact words) And that I will have to learn to live with them.

PBC Symptoms:

Itchy Skin
Extreme Fatigue
Muscle waste and weakness
Joint Pain (Arthralgia)
Pain in upper right abdomen
Sleep issues
Poor Appetite
Diarroha
Itchy Ears
Dry Skin
Jaundice
Plus many, many more.

It is very important that people are aware of the less than usual complications of untreated hashimotos disease..please read my blog and help others with it.

I will post more as I find out about this condition and how it affects my life as well as any self help methods I find.

As each day passes I notice other symptoms coming into play, but I am in acceptance of these conditions now and am trying to get my life back.

Bets Wishes

Conniefused

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10 replies

    Jtxx
    Jtxx

    Hi conniefused. I was diagnosed with an underactive thyroid in 2005 and I currently take levothyrozine (only 25mg - my sister takes 150mg). I also have AIH/PBC overlap syndrome and like you I am on steroids (first prednisolone and now Budenofalk due to side effect from prednisolone). (Btw you can only go on Budenfalk if you do not have cirrhosis). I am also on an autoimmune supressants (Azathioprine - was 150mg but had to drop to 100mg as WBC too low - went up a bit but is now lower than ever - waiting on consultant phoning me back). I am being weaned off the Budenofalk and hope to be off them in 4 weeks time (as long as they can control my white blood count).

    You mention being on Aza for life. My consultant is hoping to stablalise me for a couple of years and then to tray to take me off Aza and see if I remain in remison (apparantly around 30% of patients do - I hope I am one of them).

    Very informative article above. Thank you for doing that. I have never heard of Hashimotos. I know what you mean about the AIH though because my consultant told me that if I had gone undiagnosed I would have been dead in 3-4 years time. Scary - I am only 47 yrs young. The other thing I will say regarding your lack of appetite, I am the opposite. One of the frustrating things about AIH and PBC, there are never two cases the same! No text book answers.......

    Hope all goes well in your treatment plan and I hope that mine is only a wee bump in the road and sorts itself out. Take care. x

    LoveMyLiver
    LoveMyLiver

    Thanks for posting all this information about Hashimotos Disease. Very interesting!

    Tumbleweed41
    Tumbleweed41

    Hi Conniefused -
    Wow! what a piece of work and so very informative. Thank you for posting.
    I am trying to ignore some of it but as I'm sure you know, once you have an AutoImmune disease, you seem to collect more. -:( I also am AIH/PBC overlap and I - don't - want - any - more!! LOL I was/am AMA neg. but ANA pos. as I have mentioned in other posts. It makes me think of the saying "Are we having
    fun, yet?" Sheeesh!!! ga

    Tumbleweed41
    Tumbleweed41

    P.S.
    I hope that you don't mind. I copied this onto my wordpad so that I could make a copy for my Drs. Please let me know if you have a problem with my doing that and I will delete it - ga

    conniefused
    conniefused

    No probs...only want to helpxx

    My Gp said to me that it was a rare combination..I just told him to go do research lol

    xx

    Tumbleweed41
    Tumbleweed41

    Yey!! You go, girl!! -:)

    conniefused
    conniefused

    Hi hashimotos thyroiditis is the autoimmune type of thyroid illness. It is called hashimotos disease after the japanese doctor who discovered it. It acts like underactive thyroid, but is also related to antibodies. With hashimotos your antibodies would be raised.

    It is common that if a person has one autoimmune condition , there would be others present also. There is also a link between several autoimmune conditions and AIH/PBC, and autoimmune thyroiditis or hashimotos disease is one of them.

    xxconniefused

    zipitydoo
    zipitydoo

    I have had my thyroid checked twice this year. The first time it was up a bit and the second was told it was ok.
    Just wondering whether auto immune thyroid problems would show up in a normal thyroid test or whether the test for hashimotos would be looking for something else?

    helpholly
    helpholly

    hi. i have hatchimotos disease. my endo cant figure out why ive gained 30lbs of water weight in a week and holding. my tsh is 24 and my count is in the thousands. i take synthroid but isnt working. ecocardiogram came back unreadable. i go for a muga scan of my heart next week..have u heard of this? thank you.

    conniefused
    conniefused

    Hi zipitydoo,

    Did you just have the standard T4, TFT, TSH, test done? To find out if you have hashimotos disease when you have your thyroid test done, your Gp should test for antibodies. In hashimotos antibodies attack your thyroid gland as they do in PBC and AIH...and would be raised. Next time you get tested also ask for your antibodies and your T3 and reversed T3 to be tested.

    xxconniefused

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