Symptoms v Tests Part 1 - what they revealed to me and failed to reveal when taken at face value...

[skyfall]

OK - here's the next blog -

Part 1 - Symptoms vs Tests

This will sound all too familiar for some, for others stay with it...

...by the time I'm done I'll have covered thyroid imbalances, adrenals, gut issues, oestrogen, cortisol & DHEA, anti-thyroid Abs, pernicious anemia, Addison's disease.

And how to retain a sense of humour when you get angry...

Background - Symptoms & Diagnosis

August 2002, USA. I was diagnosed with thyroid issues. I had just had my first child.

I had terrible aches in my joints - I couldn't straighten fingers or walk when I woke up until it wore off. When tested TSH indicated I was hyperthyroid (so that's where the baby weight went...) but I had TPO-Abs so the endo waited for my thyroid to crash. It did within 6 weeks. I don't have test results from this time - I went back to work 5 days after giving birth. My mind was on my daughter, not on my health. Being told I had to take thyroxine for ever knocked me sideways - I'd always been super-healthy, but hey - that's life, right?

By September 2004. Everything had stabilised I was on 150mcg thyroxine.

fT4 = 17.0 (12-22)

TSH = 0.4 (0.2-4.0)

fT3 = 4.2 (2.8-6.0)

Anti TPO Abs were ~700 (ref range >60).

I still felt rubbish - extreme fatigue.

November 2004, Australia. My new Aussie GP listened to my symptoms and tested me for 'thyrogastric cluster' Abs and referred me to a gastroenterologist who checked for Crohns (another disease in the cluster). I was clear of Crohns.

Blood tests came back positive for gastric anti-parietal cell Abs. These can lead to pernicious anemia.

My ferritin stores were down at 68. I took a liquid iron supplement.

My B12 was low. I got B12 shots.

From 2004-2007, based on symptoms, my Aussie GP dropped my dose 25mcgs twice to 100mcg. According to the BTA I was now taking the 'standard' amount. I was still exhausted but I had two small children and a full time job - who wouldn't be?

November 2012, UK. After 4 years on 100mcg thyroxine - taking it religiously first thing in the morning - my symptoms were unrelenting - exhaustion, puffiness, stubborn midriff weight that wouldn't budge, depression, wild mood swings, disturbed sleep. I didn't know myself any more.

My UK GP patted me on the head, suggested menopause (haha) and told me to take sleeping pills to 'break my disturbed sleep cycle'. This was the 4th consultation where I'd raised my symptoms. He assured me the test results indicated I was well-managed.

NOTE: under NHS guidelines (on their site the Map of Medicine) he should have referred me to an endocrinologist as I was still symptomatic on thyroxine.

Thoroughly unconvinced, I didn't take the sleeping pills.

Instead - desperate for answers - I did a finger prick test at home - fT4 and TSH (£23.00).

I knew I'd be in range but wanted a base-line.

fT4 = 19.8 mmol/l (ref range 10-22)

TSH 0.26 (range 0.24-4.0).

But I felt horrid.

Intuitively more than anything else - I wondered about these results - at opposite ends of the ranges. If we're hypothyroid on thyroxine we're told to aim for this. So why did I feel ill?

I wondered what would happen if I reduced my dose or stopped taking it at all.

I did an autoimmune panel to see where my Abs were at

anti-TPO Abs = 347 >60 (autoimmune thyroiditis)

anti-TG Abs = negative

anti parietal cell Abs = positive (pernicious anaemia)

Around this time I was programming symptom checkers for a health business.

I filled out

- the hypothyroid checklist and was clearly symptomatic.

- the pernicious anaemia checklist - I was OK

(I have an iron infusion ~ 18monthly and B12 shots 3 monthly).

BUT when

- the oestrogen dominance checker I was symptomatic across the board and

- the adrenal fatigue checker I was symptomatic across the board.

Most notably recurrent waking 2-4am plus an almost total overlap in hypothyroid/hypoadrenal symptoms.

I'll deal with the oestrogen dominance later. It was the first thing I solved. It took 10 days to eliminate the wild mood swings from the picture all together (and save my marriage).

Adrenals

I dug deeper. I did the Holmes and Rahe Stress Test (I'll cover this in a later blog).

I failed it badly. I read Dr Peatfield's book and started tracking my basal temperature as a cross-check. I was horrified to find it lurked around 35oC all day and sometimes ventured lower. According to the NHS at this point you have hypothermia! (helpful - not).

I knew my thyroid was playing up but wasn't sure what was REALLY wrong and more importantly WHY.

I got more tests and a new treatment plan. My doctor wasn't interested so I sought the help of a Functional Practitioner.

Throughout the process I've done a variety of tests (thyroid panel, Abs, adrenals, CDSA, B12/iron/folate - urine, serum and spit) but have tracked TSH, fT4 + basal body temperature throughout. I will share all the results in the next blog (I'm compiling so they make sense).

Most importantly I've gone on how I FEEL, knowing T4 has an 8 day half life and things take time to settle - although, in my experience, change can happen quickly.

Summary so far is

Adrenals are in recovery

Thyroxine dose has halved once and is going to be halved again

No fatigue, no random pain, no digestive issues, sleeping properly through the night.

Feel human.

See the next blog for what I found out.

Some tests are great, some are questionable and some are crucial.

Please note - this is a work in progress but now I go on SYMPTOMS.

We all know our own bodies although they can surprise us in unpleasant ways.

I'll explain when and how my symptoms began to resolve. And there's another missing piece of the puzzle I stumbled across - my symptoms didn't only reflect thyroid and adrenal problems. When things have gone as awry for that long other things drift out of balance.

[Angel54]

Hi Skyfall,

This is so interesting and wonderful that you have managed to work out all this information. Cant wait for your next blog. It proves that people can get better after being poorly for a long time.

Love Angie xx

[PR4NOW]

What is truly sad is the fact that you are not the exception but the rule. I look forward to the next blog. PR

[poing]

Oh that's so not fair...

This is a real teaser of a blog.

Can't wait until the next installment.

[Clarebear]

Yes me too - hope you are now feeling well. xx

[lynx]

v interesting and easy to read

[merissa]

sky fall me too, just sorting out all my issues that have gone wrong, I am found to have pernicious anemia, estrogen problems, high cortisol, dhea, fluctuating TSH, high thyroglobulin, had lw vitaminD, low iron, leaky gut and possible mercury poison waiting for a test.

I also have issues that have been caused by procedures ( not intentionally of course)

not on meds at the min, as I feel maybe if i sort out the other smptoms, I may not need thyroxine, the problem is my immune sytem is out of whack.

xx

[skyfall]

I think the complication is that it's never one system that's out of whack. My experience is that GPs and endos tend to treat things in silos - one at a time, treat the symptoms vs find the cause.

What I've had to do is work backwards to the cause - there's loads of information out there. Lots of it is really good. The difficulty is finding a Practitioner to go on the journey with you in an affordable way.

This IS chronic disease - it's complex, interwoven and takes a long time to make sense of.

I'll share what order I did it in but I suspect wherever you start you end up covering the same ground eventually...putting next instalment together - takes a while!

[Hidden]

Very interesting blog skyfall. May I ask you how did you deal with your oestrogen dominance ? Was it progesterone cream?

Also what did you take to heal your adrenals ?

E xx

[skyfall in reply to Hidden]

Hello Edysia

I'll cover oestrogen a bit later...it's the first problem I solved - very simply.

Did a symptom checker for oestrogen dominance (more on the symptom checkers later) - symptomatic across the board.

I take a supplement called Premular = Extract of Vitex agnus castus (Chaste tree) Ze 440 equiv 180mg dry root plus 1000mg Evenign Primrose Oil daily.

Premular was prescribed by an Aussie functional practitioner.

My symptoms (psychotic mood swings, anger - like having PMT 3/4 weeks) stopped within ~5 days - feel like a totally new person. That's when I started thinking about what else was wrong.

[ravenhex]

Very interested in this. Im symptomatic. Oestrogen is one very problem area. especially this might also help Edysia too.

[skyfall in reply to ravenhex]

I'll cover oestrogen a bit later...it's the first problem I solved - very simply.

Did a symptom checker for oestrogen dominance (more on the symptom checkers later) - symptomatic across the board.

I take a supplement called Premular = Extract of Vitex agnus castus (Chaste tree) Ze 440 equiv 180mg dry root plus 1000mg Evenign Primrose Oil daily.

Premular was prescribed by an Aussie functional practitioner.

My symptoms (psychotic mood swings, anger - like having PMT 3/4 weeks) stopped within ~5 days - feel like a totally new person. That's when I started thinking about what else was wrong.

[W3ndy2159]

Really interesting blog. Can't wait for next instalment! Maybe we can all copy you and perhaps feel better well done Skyfall.

Ps...HURRY UP WITH NEXT BLOG please!

[Hidden]

Thank you for posting and it is certainly interesting. What is a Functional Practitioner, is it someone who looks outside the box?

[skyfall in reply to Hidden]

Functional Practitioners take a systemic approach. They don't look at one thing, for example, thyroid but the whole picture - what other organs, body systems may be affected as well. They can be qualified doctors who've branched out (or in this country struck off or nearly struck off)). They're generally trained in nutrition but can specialise in particular areas like endocrinology - functional endocrinologists.

[nightingale-56]

Guess we could call our lovely Dr P a Functional Practioner then - he certainly fits the bill. I am collecting all your blogs as they are so informative and something we can refer to from time to time. Maybe you can collate them into a book!

[rosetrees]

Thank you for this skyfall. I've read part 2 as well. Please keep posting. Apparently I've been hypothermic all my life!

[Suin]

Have you started the new blog? I'm symptom city here!!