A New Millenium

For years I hadn't slept well: a 'lively' brain, which just wouldn't shutdown meant it was difficult to get to sleep and then I was always awake in the early hours of the morning: I sometimes got up at 3am to work and to give my husband some chance of sleep.  Whenever I did manage to get to sleep, I had frequently had bad dreams or nightmares - making the prospect of going to bed, even more off-putting.

Increasingly, I got even less sleep as these events were accompanied by terrible bone, joint and muscle pains in my hips and legs.  I tried endless beds and mattresses to try to stop the pains but often they would just lead to greater back pain.  Previous decades of being freezing cold gave way to horrendous night sweats and increasingly noisy tinnitus!

During the day, I was also struggling with low blood sugar and the fatique was extreme.  My face and eyes were even puffier and my eyes were barely open.

The excessive bloating and chronic constipation I had always experienced was now accompanied by pain and my hoarse voice disappeared completely at times.

By January 2009, I was SO tired that I couldn't walk up the slightest incline nor walk up steps without using my hands to pull up my legs: I was, quite literally, at the end of my tether;  I booked an appointment with a different doctor at our surgery.

The doctor booked me in for blood tests and put me on HRT - Premique Low Dose.  My TSH level came back as 12.74 [0.35-4.5]; "come back for another blood test in 6 months".

Six months later and it had barely changed: 12.49; "come back for another blood test in 6 months"....

Six months later and it had worsened: 15.12 - but I had done lots of homework by then...!  I asked her for thyroid hormone and she agreed (at last!) and did an antibodies test, which came back highly positive for Hashimoto's.

So, in January 2010, I started on thyroxine (25mg), I had a definite diagnosis of what was wrong with me - what could possibly stop me from getting well...?!

Joy ...and Pain

The increased problems I had as a result of having our daughter could not blunt our joy and we have been so lucky to have her, after 18 years of trying.

The labour was a protracted and painful one as the baby (we didn't know her gender beforehand) was and remained in a posterior position.  We weren't told about this until after the birth and hence had no opportunity to try to correct it beforehand or be prepared for the 23 hours unproductive labour and bone crushing back pain.


Oxygen for the baby and forceps were required and by the time our daughter was delivered, my blood pressure had fallen so low I was shaking too violently to be able to hold her. The bruising I was left with made sitting at all impossible for two months - I had to lie or stand - and I needed support for sitting for six months.  This left me with a curved lower spine and its attendant problems and pains.

Without once examining me two doctors at my surgery just dismissed my back pain and leg paralysis as down to being an older mum and that I'd just get over it .  Having given up with them but still desperate for help, two years later, I went to an osteopath, who I was with for 18 months.  He got me walking much better but my spine would not remain straightened, due to the length of time which had elapsed.  He explained that:  "basically, your daughter pushed your spine out of the way whilst trying to get out."  Consequently, I still have back, hip and leg problems and pain to this day and I wonder if things might have been different if the doctors had taken any notice?

At the same time I began to experience lots more symptoms and pains and lot more severe pains, including my midriff, feet and hands.  By 2002 I was so tired and, from being cold all my life, started to have hot flushes and night sweats, which took over my life!  Hot flushes could happen at any time, but mega-blasts happened every two hours, day and night: I could set my watch by them; I was getting no sleep!

Still no help from the doctor so carried on researching for myself and discovered I was gluten intolerant - what a difference giving up gluten made!  I no longer had such a hard, solid, painful midriff, my fingers and toes would bend and I wasn't walking on tennis balls anymore!  Unexpectedly too, I haven't had a bout of bronchitis from that day to this, hardly even a cold..!!! 

However, despite this relief, I continued to go downhill, spurred on by a number of terrible events, mostly notably my mother dying a horrible death in hospital.  She went into hospital with a problem with her hip replacement and we watched helplessly as she deteriorated in front of our eyes, whilst the medics did nothing.

Only since I have been diagnosed with Hashimoto's, do we now know that she died from undiagnosed hypothyroidism/Hashimoto's.  She had been ill for decades with - what I now know - were lots and lots of hypothyroid symptoms (she had the same doctor as me..).  We could only watch and badger the doctors as she experienced the full horror of  Hashimoto's encephalopathy and horrific hallucinations, with a swollen stomach the size of a beached whale (ascites), before she fell days later into a coma and then died.  The medics did absolutely nothing and had no idea what killed her: we had to go especially to get the death certificate in time for the funeral as they tried to decide what to put - it states a number of minor things, none of which could kill anyone.

Talking years later to the same surgery nurse who took my blood as my mum's, I discovered mum's bloods were considered 'normal' and she never had an antibodies test done (the nurse had never heard of Hashimoto's).

So, my mum was subclinical hypothyroid by blood tests, but ragingly hypothyroid by symptoms, features and concomittant conditions, yet for the sake of being given an antibodies test, she not only died totally unecessarily, but in the most horrific manner: for the want of a doctor to actually LOOK and LISTEN to a patient (the same doctor I also had for 25 years) my mum would probably be alive today and have enjoyed a quality of life denied her, as she was kept in an awful painful, hypothyroid state.

Growing Up (Outwards!)...

In 1971, I married, aged 20.  My husband and I talked of having four children but by the time I was 22, it just wasn't happening.  I went into hospital for a D&C but they found nothing amiss.  One month later I had another D&C (!) and a laproscopy and once again they found nothing wrong.  (As a little 'extra', this time, when I came around from the anaesthetic I had total double vision for a while.)

After further tests, on both of us, we were sent away and told they could find nothing wrong "and it's probably that you're just low fertility."

About four years later, in 1977, I did get pregnant but this ended in a miscarriage after a few weeks.

As it looked like we could not have children, in 1979, we applied to adopt a child, but were thwarted in this too: during our first official interview (having already completed all the forms, checks etc. to their satisfaction) we were told that there was a waiting list and that by the time we would reach the top of the list we would be too old and hence they would not accept us - too old, at 31! 

In 1980, my husband and I went to university, for three years, as undergraduates.  By then, I was desperate for medical help, for a whole range of symptoms - which I now know are ones of hypothyroidism.  Of particular concern and annoyance was my very puffy eyes and face - looking straight ahead I could actually see my cheeks and my eyes were barely open.  As I said to the doctor, I wasn't there for cosmetic reasons: the worse my eyes were, the worse I felt; the two were definitely linked: a statement I was to re-iterate to an endocrinologist some thirty-one years later, and with just as little effect.

The doctor barely looked at me and gave me a diuretic, something, I now know was the worst he thing he could have given me.  I did use it on and off for a few years when I was really desperate, but it never really helped and as I still silently hoped I'd get pregnant, I didn't want to take it long-term.

My health problems and waistline continued to grow, regardless of how little I ate or how much exercise I managed to do. (I was and am one of the many people who don't eat junk food, cakes, crisps, chocolate etc. and yet have to put up with seeing/hearing about people who lose so much weight by giving up such things; galling and very unfair 

For years, life often seemed to be me hiding things - like pretending I wasn't out of breath on a walk (by shallow breathing) or that hours spent in the bathroom wasn't because I was chronically constipated.  Despite my husband's support and him always saying about my weight that 'there must be more to it', ie. he knew I was eating little and exercising, and that he didn't think I was unfit, I always felt fat and lazy - oh, and spotty! 

Occasionally, over the 25 years I'd been under the same doctor's surgery, I'd go for help: "I'm SO constipated and horrendously bloated..." - "eat more fibre" - "I can't eat any more if I tried and I think that it actually makes it worse..."  - "eat more fibre" ; "I've got bronchitis again?" - "yes, you need antibiotics" - "I've got bronchitis again?" - "yes, you need antibiotics, but don't bother coming to see me just phone up when you need them" ; "I've been permanently nauseous for the past two months and I seem to be reacting to more and more foods" - "well, avoid them then" ; "I'm not getting any sleep because of the pains" - "it's your age" [first said when I was ~35!] - and so on and so on. 

In 1989, desperate, in pain, reacting very badly to the onion family I went to see a Homeopath.  He listened; he prescribed; I took; I no longer reacted to onions; I became pregnant...and in 1990, 18 years after first trying for a family we had a beautiful daughter (who is now 21 - where does the time go?!).

All female problems including infertility, miscarriage, fibrocystic breast disease, ovarian fibroids, cystic ovaries, endometriosis, PMS and menopausal symptoms are usually caused or aggravated by hypothyroidism coupled with estrogen dominance (estrogen unopposed by progesterone).  This can occur even with a normal estrogen level if progesterone is low or with normal progesterone if the estrogen is high.  What is the thyroid-estrogen connection?  Estrogen inhibits thyroid secretion.  Progesterone stimulates it... 

Taken from:  Hypothyroidism Lita Lee

WHY THIS BLOG..?

Although it's now agreed that I have been hypothyroid practically all my life, I was only diagnosed in January 2009 and started on thyroid meds in January 2010, when I was also diagnosed with Hashimoto's.  Since then, I have discovered so much about the illness both through personal experience and from the Internet - and nothing from the medics who were supposed to have helped me!

I hope that by writing down my experience, I might be able to help other adults or parents struggling with this grossly under-diagnosed and badly handled condition.  I will also add links to websites, forums and articles I've found particularly helpful or interesting but, PLEASE NOTE, I am neither medically trained nor qualified and offer this as information and not advice.

Please add your own experiences...

Starting small...

My story starts with a slightly premature birth in 1950, followed by a happy childhood but one dogged by ear, nose, sinus and throat problems.  When I was about two years old I had chicken pox and pneumonia simultaneously, and my parents were told to move to a better environment or risk losing me; so we moved to a beautiful part of the country, the Peak District in Derbyshire. 

At 7 years of age I and my 10 year old brother and a whole ward of children were booked in to have our tonsils removed.  As I had developed whooping cough my parents queried whether I should have the operation.  The Sister said to leave us both but she would speak to the surgeon about me - she forgot..!  As a consequence, I could neither lie down, eat, sleep, nor talk (much to the amusement of my brother, in the next bed).

My throat was raw and I spent the few days there being shouted at constantly by the nurses (all nuns!!) to swallow the copious phlegm  I coughed up [apologies ] and which was completely cutting off my airway.  There were some highlights for a young girl though and I felt very special and grown-up with the nurses on night duty sitting by my bed, reading their romances and chatting to me (if I lay down I, quite literally, choked).  The rollicking the Sister got from the surgeon on the last day was quite a spectacle for young, innocent eyes too!

Getting bigger...

From a scrawny child I grew and grew and grew - width-wise, unfortunately . I still had constant ENT problems: earache is an abiding memory of my childhood as is leaning over a bowl of boiling Friar's Balsam under a towel (and lots of happy times too!). Nosebleeds and headaches were also part of life.  X-rays discovered a problem with my nose/scull formation which prevents air circulating properly (I permanently feel 'stuffy' and always need fresh air in my face).  An operation to correct this was available but considered to be too dangerous for a problem which wasn't life-threatening.    

At 13, I went into hospital to have all four wisdom teeth removed - yet more humiliation, as I spent several weeks imitating a hamster with its cheeks full of food and yet unable to open my lips wide enough to get food in, so unfair!  And yet more teenage embarrassment was to come: I contracted an infected mastoid and suffered the indignity of receiving daily penicillin injections in my backside, for a week; mortifying - and extremely painful.

As I reached my late teens, childhood ENT problems gave way to bronchitis, which I would bark and choke my way through several times a year, each time for many weeks or even months (each year, that is from about 1965 until 2002 - when I went gluten-free - but more of that, later!)

SO, I had a pronounced ENT childhood and recurring respiratory infections throughout my childhood and adult life: 

Hypothyroidism causes immune suppression and anemia.  Therefore, it is not surprising that hypothyroid people are subject to recurrent infections.  Dr. Broda Barnes cites the following infections among hypothyroid patients:  frequent colds, respiratory infections including bronchitis and pneumonia, chronic sore throats, sinusitis, recurrent otitis media or middle ear infection, tonsillitis....  

Taken from:  Hypothyroidism Lita Lee