Recovery is Possible - Assuming You Know What's Really Wrong... Part 2 - Symptoms vs Tests - The Thyroid Piece of the Puzzle

[skyfall]

I’m going to deal with thyroid today. It’s going to be long. Sorry. There’ll be overlap with adrenals because in looking at thyroid I discovered adrenal problems.

Recount - felt horrible – exhaustion robbing me of story-time with my children. By 6pm I felt like I’d been run over by a truck.

I started testing myself in November last year – simple finger prick tests (~£23). After 4-5 abortive GP visits and feeling like an hypochondriac fool I went back to basics. I read Doctor Peatfield’s book – Your Thyroid and How to Keep It Healthy.

At this stage I believed my thyroxine dose (100mcg) was too high.

TSH suppressed, T4 high but in ‘reference range’ for the tests.

See Results Table. I still had all the symptoms of hypothyroidism.

In retrospect, I wish I’d got more tests at various times to have an even more complete picture but this is the best I could do. Bit of a voyage into the unknown…

Getting Support

I spoke to Dr Peatfield. He agreed thyroxine too high but suggested we check out my adrenals with a saliva test.

I did this and also tracked myself on the Holmes and Rahe Stress test every years since I had my kids (I’ll cover this with adrenals).

At the same time we did a urine test for T4 and T3 plus I did a full thyroid panel including reverse T3 and antibodies

(I’ll deal with the IMMUNE SYSTEM and THYROID RELATED AUTOIMMUNE DISEASE tests in a later blog.)

Treatment

He suggested I come off thyroxine for 10 days and start adrenal support at Day 8.

I was – to be honest – terrified. I’d relied (in my head) on this little white pill for 10 years. Would I be OK? How much weight would I stack on and how quickly!!

So I checked before I did it. Thyroxine has a half-life of 8 days. That means it takes 8 days for half of it to clear from your system, a further 8 days for ¾ to have left your system. So I figures I’d still have some for my thyroid to work on assuming I wasn’t producing any of my own.

Phase 1 – Symptoms Off Thyroxine

I felt AMAZING. My vision cleared. Literally. I went from being unable to read the back of a pill bottle to having clear vision. Note – around March last year my eyesight went south fast in about 3 months.

I had no obvious hypothyroid symptoms until ~ Day 8 then I got achy joints. That was all.

I WASN’T tired. I had energy.

On Day 10 off thyroxine I checked my bloods and my adrenal function.

Not surprisingly my T4 levels had dropped but my TSH was behaving.

Dr Peatfield’s assessment - I was having problems providing enough T4 (and my adrenals were stuffed). However my liver etc. was happily producing enough T3. I had no problem with reverse T3 blocking T3 receptors.

I still had a nagging question about HOW WELL my cells are ABSORBING T3.

I’ll deal with this in a later blog.

Day 11 – Adrenal Support

I started taking 1 Nutri Adrenal Support tablet (NAX)

+ 2 Solgar Deglycyrrhized Liquorice Root Extract

+ selenium

+ magnesium citrate

+ 4g vitamin C split into 2 doses

I also take Nutrigest (digestive enzymes) with every meal (more on this later when I tackle Gut Issues).

Phase 2 – Symptoms On Adrenal Support, Off Thyroxine

It just kept getting better. After 10 years of rubbish sleep, waking up between 2-4am (buzzing, worrying and problem solving) I slept through the night.

Needless to say this had a knock on effect across the board and I felt NORMAL!!!

BUT I did have joint aches and was now feeling the cold. But still not tired.

This led me to the conclusion that I need T4 but it was unclear how much.

Blood tests confirmed that my TSH was heading up (so pituitary might be OK?)

T4 had plateau-ed at the low end of the range.

My GP (who is now suddenly on board…more on this at the end of the blog) pointed out that he sees a TSH measurement of 1.54 and that range not to apply to me as I’d been taking thyroxine and that I needed more T4.

Dr Peatfield agrees.

Day 13 – Adding Thyroxine and Thyroid Support

In addition to Adrenal Support (above)

I started taking 50mcg thyroxine

+ 1 Nutri-Thyroid

Phase 3 – Symptoms On Adrenal Support, 50mcg thyroxine and Thyroid Support

The aches and cold extremities went away. I continued to sleep through the night.

My vision has deteriorated again (I am yet to follow this one up…)

The attachment lays out the test results for my thyroid.

Day 28 – Retesting and Maintenance

I’m about to redo the full thyroid panel and adrenal spit test a month into this program and will add those results when they come in.

I’ve added in an L-tyrosine supplement to my daily intake. L-tyrosine is the precursor for T4. I know I have some gut malabsorption issues. I’m wondering if my thyroid just isn’t getting enough precursor form my diet to make T4 or if it’s just too damaged after 10 years of UNTREATED auto-immune destruction.

I’ll cover GUT ISSUES – malabsorption, stomach acid etc.. in a later post.

Basal Temperatures

I’ve been checking my basal temp on waking and before bed daily since before I embarked on the program. Long story short…

Prior to coming off thyroxine & starting adrenal support – Temp hovering ~35oC or lower

Off thyroxine – temperature bounced up by 0.2oC per day until it stabilized at 36.4oC

Off thyroxine, on NAX – temperature bounced up again to 36.6oC

On thyroxine, thyroid support + NAX – temperature stabilized around 36.1oC

That looks a bit low in my book but I had a setback around 14 days after starting thyroxine. This took my temperature down to high 34oCs. Coincided with middle of my cycle - that may explain it.

Without this dip my average temp is closer to 36.5oC (with normal ups and downs you’d expect over a month – useful link: en.wikipedia.org/wiki/Basal...

Final Note - What my GP says…

Today I took my life in my hands and took my test results to him. I explained that after 4 months of visits for diffuse symptoms – chest/bronchial pain, back pain, stomach pain and exhaustion – I’d got desperate and taken matters into my own hands.

I took him through the results – thyroid, adrenal, immune, gut, nutrients (vit D, B12, folate, iron).

He was actually interested, although a little horrified that I’d stopped thyroxine all together in a day. He said this could have caused an immune crisis. I pointed out my anti-TPO antibodies actually went DOWN when I came off thyroxine.

He confirmed GPs don’t like to talk about adrenals.

Pending my next adrenal saliva test he’s happy to refer me to an endocrinologist for a second opinion. Curious about what this will yield. Either way this is progress. For now.

My next post will cover Adrenal Tests, taking the NAX supplement, set-backs and what really has to change.

After that I’ll cover Immune System, Oestrogen, then the Gut and What Supplements & Why for anyone who’s interested in the whole picture.

Please note – this is a real work in progress – I’m prepared for anything.

One more thing…PLEASE DON’T take this and try to replicate it without talking to someone.

You can always get help by phone if you can’t get an appointment and you may have other health issues I don’t have like hypertension where something like liquorice can cause real problems.

[sarahstevenson]

Well done sky fall you're a star!

My journey was very similar especially stopping the 100mcg T4 and Vit C response like you I could see better and felt like me after 10 days .

Its been rockier here and there since but I feel I am the manager not the NHS.

Adrenal Support / iron supplements and Vit D have been key for me.

Also nutrigest has helped me to avoid gall bladder surgery - still on low fats but just use nutrigest if i anticipate a fattier meal on the horizon.

I am now looking into B12 as I think this may be another piece of the puzzle.

I need a break from the keyboard at the moment but am really interested to see your great analytical approach.

Thank You

[skyfall in reply to sarahstevenson]

Hello sarahstevenson...I'd really like to hear your story too....

[nightingale-56]

How brave you are sky fall. Such an interesting and useful blog, you have spurred me on to trying to sort out my special needs son's problems, just need to get to see a thyroid specialist instead of a diabetes specialist. We don't see one until July, but in the meantime I will mak sure I gather together all the information I can and ask to be referred back to UCL where we were until my son was 19 - he is now 35, and I wish I had never asked to be referred locally. Look forward with interest to your other blogs. Regards, Janet.

[greygoose]

Did Dr P (we don't use full names here) recommend the liquorice for your adrenals? I ask because liquorice is an adrenal stimulant and, personally, I don't think that stimulating a sick gland is a good idea. But, of course, I'm not a specialist.

Can you tell me what you mean by this : 'So I figures I’d still have some for my thyroid to work on assuming I wasn’t producing any of my own.' What work does the thyroid do on T4? I don't understand.

How long ago did all this happen?

Hope you don't mind me asking questions, Grey

[Xanthe in reply to greygoose]

My understanding is that liquorice slows the break down of cortisol by the liver, thus maintaining levels in the bloodstream. So it supports the adrenals rather than stimulating them.

[greygoose in reply to Xanthe]

Well, you may be right. I've never heard that. I've always been told that liquorice stimulates the adrenals and therefore to avoid it.

[skyfall]

No problem Grey...And a good point - probably should have put 'liver/body to work' on vs thyroid for the T4.

Yes Dr P suggested liquorice and CoQ as well as vitamin C.

I'd been taking liquorice for a gut issue already.

Started all this on February 4 so it's been 5 weeks since I started changing things.

Prior to that I was doing the boomerang thing with the GPs and feeling rubbish.

There have been definite peaks and troughs. I'm dealing with adrenals next so you'll be able to see what's changed there.

Just a quick question - why don't we use full names? Hard not to since I've referred to the book. Thanks for the comments!

[poing]

I don't know if this is a silly question, but how do we view the attached table properly?

[Clarebear]

I think it is generally Ok to use Dr S and Dr P's full names, as they are already known to the medical establishment. We don't want to draw attention to other helpful doctors who maybe under the radar currently

[skyfall in reply to Clarebear]

10-4 if I'm lucky enough to find that my GP turns supportive I'm protect identity!

Thanks

Clare

[merissa]

could you please explain about thyroxine having half of life, so to speak and have you got a link in reards to this? also I was on 25mcg and was asked to stop, how long would this medication clear my system?

and well done xx

[Vickiti]

Simply put - The half life of a substance is the time it takes for half of it to be gone/used up etc.

The half life of T4 is 8 days. So in 8 days you will have half as many molecules of T4 as you had on day zero - as long as you didn't take any more.

[skyfall in reply to Vickiti]

Thanks Vicki!

[W3ndy2159]

OMG! Skyfall you are brilliant.

I don't know where to start with praise and admiration. I'll just ramble on and just because I've written something 1st it doesn't mean I think it is the most important of what I want to say

I have loved reading these blogs of yours - it is like reading a good book ( Girl with the dragon tattoo trilogy - Twilight saga - Harry Potter ) you finish one and can't wait for the next instalment. Are you a writer by the way?

You have detailed your journey so clearly and precisely that it is easy to follow - I am in awe! You are so brave to go 'cold turkey!'.

I too, like sarahstevenson, have recently made changes with my medication with positive results so it is good to read about your journey too and compare.

My levo has been reduced to 150mcg from 200mcg 10days ago by Dr as recent blood results suggest I'm being over medicated.

Bloods also showed low iron and low VitB12.

Now also taking the following supplements :-

210mg ............ ferrous fumarate ........x3 daily

1000ug .............VitB12........................x3 daily

15mg.................Sea Kelp - iodine.......x1 daily

25ug...................VitD3.........................x1 daily

250mg................Magnesium...............x1 daily

500mg.................I-tyrosine..................x1 daily

Betaine HCL.....digestive enzyme........x1 daily

I listened to what people were saying about various Vitamins and supplements and decided on these for a variety of reasons. I was also on anti-depressants for 5yrs after my step son died in a tragic accident which really effected me. I have gone cold turkey and stopped taking them!!! ( silly maybe but time will tell ).

The results of these changes have been noticeable especially as its only been a short time. I do hope they continue and I don't fall to earth with a big bump and crash and burn!!!

My eye sight has become clearer - like seeing high definition after being fuzzy. Colours are more vibrant.

My hearing has become sharper-before it was dull.

Loads more energy. Always completely exhausted before. Could fall asleep anywhere night or day even fell asleep at rock concerts, theatre and pictures. LOL! When I needed a nap it had to be ASAP.

Digestive system calmer.

Muscle weakness now stronger. Aches and pains less.

Brittle nails seem to be getting better and they are growing faster and longer.

Hair has more shine and softer (less coarse and dull).

Heightened emotions - Seem to find everything funny now. Can't remember being like this for years. Cried at Sunday nights "call the midwife". Can't remember the last time I cried at something on TV.

It all feels very strange - these new symptoms - strange but good. I feel alive. I'm not sure which of these changes has made the difference! Maybe iron supplement or stopping anti-D's or vitamins or everything- who knows. Whatever the reason I'm glad it is all positive!

Trying to go gluten/wheat free as have tummy trouble and boardering on coeliac - blood test results.

I'm so looking forward to your next blog. Keep up the blogging.

Wendy

[skyfall]

Wendy - thank you so much for your post. It's great to hear from someone going through the same stuff. I must have missed your story. It takes a lot of effort to start all over again. It's great to know I'm not alone...

It feels a bit like being in a forest with pieces of a jigsaw puzzle map that shows you the way out.

Interesting you've ended up heading towards the same supplements. And that your thyroxine dose is so high...mine was right up there for a long time. Also interesting to hear about the other things that seem to be going on. Do you have the same autoimmune stuff - anti-gastric parietal cell Abs? Is that why you take betaine HCl and iron, B12 and D and digestive enzymes??? I suspect everything you're taking is playing a part.

Have to say the eyesight thing's really bothering me. Am going to have my eyes retested tomorrow. The fall-off has just been so pronounced and sudden it doesn't feel right. I did have 20:20 vision before so perhaps it's just that any change was going to be a shock!

On the digestive side...I've also cut out the wheat (and regretfully) my favourite glass of red wine :-{

I'm about to start on a self-monitored course of echinacea and ashwandaga because I want those Ab levels down. I've been taking echinacea for a while and have seen a drop off.

Basically when I look at the whole auto-Ab situation from a distance it staggers me that we continue measuring, know they're chewing up bits of our body but do nothing to address it. Just continue measuring and monitoring the destruction.

To be honest I'm kicking myself for not taking control earlier. Too many stresses and distractions to think clearly, perhaps.

For me I suspect the root cause was stress and digestion starting back in my 20s with an idiotic career and not enough down-time. I think my thyroid went last...which is annoying since it's the only thing that's been treated. I was going to say properly treated - but that's a stretch!!!

Just one question - how long have you been on levo???? Just curious?

It's wonderful to hear positive news from people in a community where there's so much suffering.

Stay in touch and I'll blog-on!

Karen

[lizanne]

Hi Skyfall

Fantastic - what a detailed account of your journey and trreatment. eEally shows a very clear and analytical approach and a mind that is sharp - no brain fog with you!! I have so much brain fog I can barely remember what I did yesterday!

I have an appointment with my private GP today. Always a very expensive visit and tests. I lay in bed last night reading through every test and report I have had since 2005 when I first got hypo symptoms.

I have come to the conclusion that my symptoms have improved very little over the past 8 years. Ok the joint pain has gone but the draining exhaustion, lack of motivation, hair loss (receding hairline and no eyebrows or hair on arms, legs etc) I have had for 8 years are all still with me and as bad as ever if not slightly worse. This is despite trying adrenal support. armour, loads of vitamins, T3 and T4 and frankly I am at my wits end as to what else I can change or take to try ang get back to normal.

So keep those blogs coming - in particular I am interested in adrenals as I am hoping to cut out T4 and use T3 only to try and repair mine.

Good on you!

Lizanne

[puncturedbicycle]

Wow, I have that problem with my eyes too. It has got so bad that I can't read labels in the supermarket and at night even with the lights on I struggle to see clearly. I was blaming it on age and our energy-saving light bulbs.

I'd be interested in trying something other than thyroxine - and I'd really be interested in seeing what would happen if I came off it - but for the moment I'm humouring the endo.

[csparke]

I have just found a site on Youtube by Dr. Rucio, Functional Medicine with 42 video's many

which relate to Thyroid disfuctions. He answers many of my questions. I would suggest that

anyone wanting deeper understanding visit this site.

youtube.com/watch?v=9NCThgB...(Not working as expected?)

[molliemdz]

So weird -- my eyesight (& hearing, come to think of it) have just declined dramatically over the last 3 mos, as well, but I've never seen those listed as symptoms of thyroid problems. This forum is so helpful! Thanks skyfall for your blog. I hope to see more from you on the autoimmune topic.

[rustysmum]

Skyfall, am loving your blogs. I too have hashimoto's and have had to take things into my own hands as GP not interested as TSh in range (just!). Fed up of feeling poorly so long that I too saw DrP and he was a huge help. I improved greatly - having been diagnosed with adrenal issues as well as hypo issues. After six months I have suddenly gone backwards and don't know why (neither does DrP at the moment) so am doing the adrenal test and oestrogen/progesterone with a view to possibly starting DHEA and cortisol. Am hoping to get back to where I was late last year when I felt almost normal for the first time in years. Thanks so much for posting these blogs, and looking forward to further instalments. Good luck with your continuing journey .