Severe muscle pain , fatigue , hair loss , and ... - Thyroid UK

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Severe muscle pain , fatigue , hair loss , and the whole catastrophe ... TSH reading of 19 .8 [ 0 . 50 - 4 . 00 ] again ...

4esined7 profile image
18 Replies

Help ! Does anyone have positive advice ? My Endocrinologist will not test for T3 . Appalling treatment from 5th

Endocrinologist . Was on Thyroxine 75 mcg - altered to 100 mcg today , blood tests in 4 weeks - possible alteration

to 150 mcg and then the " Wait and see approach " by a conservative Doctor . I am aware of the progressive American approach = Mayo Clinic , Johns Hopkins et al + Mary Shomon [ Thyroid Patient Advocate ] among others .

Swimming in pain , brain fog , salty saliva and on it goes as you would understand . I have done all of the research

and the testing of T3 is strongly advocated . Is everyone tested for T3 automatically ? Hashimoto 's Hypothyroidism

for 3 years . Thank You . Will alter image later ...

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4esined7
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4esined7

"Thank You " for taking the time to read my words ...

marram profile image
marram

Hi there, with a TSH of 19 you are very clearly hypothyroid.

Testing T3 on the NHS is a minefield. Many laboratories refuse even if the GP requests it - but an endo SHOULD be able to get it done, if he has the will to do so.

If the NHS wan't test for T3, you COULD get it done privately if you were prepared to do so. I had to do just that. The main TUK site has information here:

thyroiduk.org.uk/tuk/testin...

The Blue Horizon tests are discounted if you go via TUK and quote the code given. I personally found the fingerprick test for TSH, FreeT4 and Free T3 very convenient because it is done at home and sent off in the packaging provided.

I did at at about the same time as I had a TSH test with the GP and it was almost identical which gave me the confidence that the T4 and T3 would be right, so I can recommend it.

It revealed that I was not converting the Levo into T3 properly, which then prompted me to do further tests to try to find the reason for this. To cut a long story short, I am now on T3 and various other supplements under Dr BDP and am making progress to recovery.

Why change the image? It's lovely! Are they baby Tasmanian Devils?

Marie XX

4esined7 profile image
4esined7 in reply to marram

Dear Marram , Maria , Administrator ,

I thank you for your time and your response .

I am , indeed , severely Hypothyroid [ the condition brought on by the disease Hashimoto 's Thyroidism ]

I have experienced periods of HYPER and then down the sharp slope to HYPOTHYROIDISM .

For 3 years I have had blood tests for TSH every 6 weeks until Endocrinologist No 5 . Blunt refusal to test for T3 . Endocrinologists are thin on the ground in Melbourne , Australia . The first 4 Endocrinologists either retired or disappeared on holiday , never to return .

Also Australia does not have a universal health care system as far reaching as does Britain .

Private health cover is of the essence and expensive - $ 300 + p.c.m. for hospital cover and extras .

Most General Practitioners charge $ 70 for a 7 minute consultation .

And I am aware that some Doctors are ' psychopathically unempathetic ' . My considered observation .

TSH guidelines in the USA = 0 .3 > 3 .0 [ milli - international units per litre ]

It rates as 0 .50 > 4 . 00 in Australia . [ " - " " " " ]

Free T4 : 10 . 0 >19 . 0

Free T3 : 3 . 5 > 6 . 5

My Free T4 = 15 .5

My Free T3 = 3 . 8

Things are not right but I am treated as a miscreant child , patted on the head and ushered blinking

into another day characterised by :

* Loss of concentration , dry eyes , swollen hands , broken sleep , flaking and breaking nails ,

excessive salty saliva , loss of half of my thick long hair in 6 months , dry and peeling skin around the

hairline , cold feet whatever the weather , sudden sharp headaches , racing heart , shoulder and neck

ache , weight gain [ 30 kilos / exercising through pain every day up and down steep hills has seen

me lose all of that weight in one year ] and this triumph is ignored by my General Practitioner and

Endocrinologist . And , horribly for the first time in my life I understand practically the definitions of

constipation , erratic mood swings and severe muscle pain et alii .

I have researched extensively : Peer reviewed Scientific papers > Johns Hopkins , Cornell , Mayo Clinic

and other sites open for public awareness .

I recommend the books and website of Mary Shomon [ Thyroid Advocate . USA ]

Website of Janie A . Bowthorpe + her book " Stop the Thyroid Madness " [ Thyroid advocate . USA ]

Website / Utube videos of Dr . David Clark [ Functional Neurologist ] USA

And for a brighter but none the less serious approach : Website of Sarah Wilson . [ Sydney , Australia ]

I do not metabolise T4 [ Eutroxig ] into T3 .

TSH = Pituitary hormone NOT a Thyroid hormone .

Thus , TSH testing is all but useless .

Hashimoto 's , the disease that brings on the condition of Hypothyroidism , is as your are aware a

disease of inflammation and not a Thyroid disease as such . But only the Thyroid gets treated .

Medication does not address the damage done to the Hypothalamus + Pituitary Thyroid [ HPT ]

axis = the key to Hashimoto 's .

Medication does not address the damage done by inflammation to the thyroid hormone receptors .

If there are not enough receptors , or they they are not sensitive enough , it does not matter how much

thyroid medication we take . The cells will not be able to use it .

Medication comes in the form of T4 [ what Thyroxine is ... ]which our bodies are meant to convert into

T3 [ the active form required by our cells ] But , if your system is shot by INFLAMMATION , it cannot

make the conversion .

Which is insane and the reason Hypo people supplement their Thyroxin with T3 , is because the drug companies produce Thyroxin in this format [ T4 ] .

T3 = Tertroxin [ artificial T3 ] ... 20 mcg tablet . You would know this .

A healthy thyroid produces 80 % T4 [ Thyroxine ]

15 % T3 [ Triidothyrine ]

It also produces Calcitonin + other small hormones such as Diiodothyronin [ T2 ] and [ T3 ]

Monoidothyronine .

So , I schlep up for another blood test in mid December . Call and not see the Endocrinologist [ her request ]

and find out what I already know . " Your TSH results are normal so you should feel just fabulous ".

However , the responses on this site offer an insight into the silent suffering of too , too many .

As do conversations with highly qualified friends / sufferers and the information afforded us by the activists in the USA . God bless them .

And of you , Maria , what of your symptoms before and after T3 ?

How are you faring now ?

" It 's coming on Christmas

and they 're chopping down trees ... " Joni Mitchell . Living Treasure .

You may have snow but the sun will burn holes into one 's head in Australia .

Thank you so very much for your honesty ...

And , yes the fuzzy ones are indeed Tasmanian Devils [ Sarcophilus harrisii ] .

They are beautiful , elegant and fearless and offer up a roar that , once heard , clings to memory .

They , like all animals , are here for their own reasons .

But , they are endangered [ what wild creature is not ] due to a horrible and fatal facial cancer .

I give to the Tasmanian Wildlife Fund in the hope that ...

I will write if you so wish .

Life changed in Australia on September 14 when a Fascist Government was elected by not much at all but enough to send us to the barricades .

In anticipation ,

Denise XXX

Having been diagnosed hypo 11yrs. ago I have only just achieved seeing an Endo this month! My GP has never considered it necessary to have T3 testing,however,my Endo has requested it and initialed the test form to make sure it is done....the disappointing thing is I have to wait until February before getting it done and seeing him again!

So ....no .....it is not easy to get the go ahead for T3 testing but I would keep persevering.I can't understand what the resistance is from GPs ....do they want to help us to solve our problems or what? We'll need a list soon on what they are permitted to treat! However, my doctor is beginning to listen so perhaps things are slowly changing.

I have just started reading" Living Well With Hypothyroidism "by Mary J. Shomon .

There is such a wealth of information in it.

I love your photo and would love to know how you import pictures onto this site?

4esined7 profile image
4esined7 in reply to

Dear Marfit ,

Thank you for replying to my ' cri de coeur ' .

You are brave beyond belief . 11 years of your body / brain being at war with itself beggars belief .

You must be tested for T3 . You must . In the USA blood tests routinely cover T0 , T1 , T2 , T3 , T4 but

not in Australia or it appears the UK . And for reasons held secret by a conservative profession dominated by men . My opinion only .

I will jump up and down until one Doctor writes the words " Test for T3 ' . T3 is done by a " Reverse

Clearance Test " [ Liothyronine ] .

Many Hypothyroid people do not metabolise T4 [ Thyroxine meds ] into T3 .

The TSH [ Thyroid Stimulating Hormone ] is a Pituitary hormone NOT a Thyroid hormone .

Thus TSH testing is all but useless .

Hashimoto 's = an Inflammation disease : not a Thyroid disease as such . But only the Thyroid gets treated .

Medication does not address the damage done to the Hypothalamus + Pituitary Thyroid [ HPT ] axis

= the key to Hashimoto 's Hypothyroidism .

Medication does not address the damage done by the inflammation to the Thyroid Hormone Receptors .

If there are not enough receptors , or they are not sensitive enough , it does not matter how much Thyroid medication we take . The cells won 't be able to use it .

Medication comes in the form of T4 [ what Thyroxine is ... ] which our bodies are meant to convert into T3 [ which is the active form required by our cells ] . But if your system is stuffed [ pardon me ] by

Inflammation , it cannot make the conversion .

Which is just so stupid . This is why Hypo patients supplement Thyroxine with T3 , since the drug companies make it in the format [ T4 ] .

T3 =Tertroxin [ artificial T3 ] a 20 mcg tablet which can be compounded by a Compounding Pharmacist .

A healthy thyroid produces : 80 % T4 [ Thyroxine ]

: 15 % T3 [ Triidoththyrine ]

: It also produces Calcitonin + other smaller hormones such as

Diiodothyronin [ T2 ] and [ T1 ] monoidothyronine .

Marfit , all of these hormones are essential to a healthy thyroid .

One knows how one feels . Research is essential . Stand your ground as it is YOUR life , when all is said

and done .

I offer you these websites for your march back to health :

Mary Shomon website and her relevant books . Important advocate . American.

Janie A . Bowthorpe " Stop the Thyroid Madness ". Book . Important advocate .American .

Mayo Clinic . The website will guide you .

Dr . David Clark . Functional Neurologist . American also . Look him up on UTUBE .

He is succinct and concise . Works from Raleigh Hill - Chapel Functional Neurology .

Sarah Wilson . Website / Blog . Sydney , Australia . Wildly hopeful and giving .

This is a start .

Your diet is so very important . For starters - No Gluten , Dairy , Sugar , MSG , Caffeine , Artificial Sweeteners and even Soy ... if you can manage one or some .

Tell me about your symptoms if that is your wish . I will most certainly reply

Australia does not have a Health Care System as does Britain . We have MEDICARE which covers

people over 65 but under that age one pays $ 70 for a 7 - 10 minute consultation . There are exceptions .

Above that private companies operate Health Cover for a substantial cost . I pay $ 390 p.c.m .

And , yes , the furry creatures are known as Tasmanian Tigers . They are endangered . Uncontrolable

facial cancers . And they do sound fearsome but they are elegant , beautiful and like all animals

here for their own reasons .

I hope that I have helped in some way . You deserve respect for your health and then all things follow .

It is Spring in Melbourne ... and it is 30 degrees already [ celsius ] . January / February / March offered

up temperatures of 40 + degrees . And we all know why .

Take care , Marfit

And to transport photographs , images , texts

RIGHT CLICK on PHOTOGRAPH or TEXT or ANYTHING really ,

DIALOGUE BOX opens -- GO DOWN to COPY . LEFT CLICK on COPY >

GO TO / MOVE POINTER TO where you want to place the photo etc

RIGHT CLICK on PASTE .

Or

Use keyboard keys -- Ctrl + V and drag and drop .

Bon Chance .

Denise XXX

4esined7 profile image
4esined7 in reply to

Hello Marfit ,

I hope that you are travelling well .

A few thoughts for you regarding importing photographs .

A photograph can be added to an email as an image appearing along with text in the body of the email .

First , locate the required image on your computer by opening the appropriate folder RIGHT CLICK

the FILE NAME [ I have PERSONAL FAVOURITES , RECENT ITEMS , DESKTOP etc ] of the PHOTO

and CLICK COPY from the dialogue box which appeared .

Now OPEN Email Program and ENTER the Email Address of the recipient , ENTER Subject Name .

Then CLICK on blank section below to write your message for the Email .

To ADD the photograph RIGHT CLICK this space and now CLICK PASTE and the photograph should

appear . After typing your message CLICK SEND to email photograph and text to whomever .

Your words really touched me .

You should not be waiting until February . Far too long and too ghastly and wrong .

Demand [ as I did , but gently and firmly ] that your GP sends a fax to your Endo stating the

urgency of your need for a much earlier appointment . 3 months is far too long for you to wait in pain .

And with all the untreated symptoms that are the direct result of an Auto - Immune disease , Hypothroidism . You should be free of worry at this time .

I saw an Acupuncturist this morning . An elegant , wise and ethereal man . Trained in China and

America and here . Words of solace , deep massage , cupping and acupuncture . A chink of light and

hope offered by a gentle and wise being . You must try Acupuncture for inflammation , muscle pain

and for deep breathing . Australia is now part of Asia . Finally and firmly . Traditional Chinese medicine

is readily available . And it works .

Your family should be nurturing you . Marfit , never use muscles or limbs which are sore .

Soak in hot water . Float in a pool for at least an hour . Heat packs will keep you still and encourage

relaxation and pain relief . Do this often . Every hour if you can . Lavender oil on skin or a beautiful cloth will also help you to relax . It works .

It is your right to have your blood tested for T3 .

Have tests for Vitamin D , Oestrogen , Testosterone , Fasting Glucose for starters .

Ignore if you have had this work done .

I wish you all the luck in the world .

Write and tell me what happens with the fax requirement - it is no skin off your GP 's nose and it is your

body . [ If you wish , that is ... to write ]

The oath sworn by the medical practitioners is " First , do no harm " . Hippocrates.

Harm is being done to you with this terrible wait and the uncertainty it sows in your thoughts .

Denise

XXX

You are not alone .

susymac profile image
susymac

I get my TT3 tested as standard with TSH, but I'm on armour (self-prescribed) and the only way my GP can have this tested is because "takes liothyronine" is written on the request form or it wouldnt be. That said its TT3 and not Ft3 so its pretty useless, but its the only one the lab does.

It would not be normal for a lab to test the T3 levels where the TSH is above the range anyway, usually it has to be below. You havn't posted your FT4 levels, if they are below range then its safe to say your T3 will be also, thereby making it unnecessary to test. T3 testing is expensive in comparison with TSH and T4, so it is unlikely they will test it if it is not required.

Private testing for Ft3 is your best option, however, I would wait if I was you until your TSH is back within range, as its a waste of money IF your T4 is also low

4esined7 profile image
4esined7 in reply to susymac

Hello Susymac ,

I typed out an extensive reply to your succinct observations .

Widespread power failure in Melbourne , Australia ... 20 / 11 / 13 .

Thank you for responding .

I recommence ...

I do not metabolise T4 [ Thyroxine / Eutroxig here / Armour to you ] .

TSH = Pituitary hormone NOT a Thyroid hormone .

TSH testing is all but useless .

Hashimoto ' s = an INFLAMMATION disease ; not a THYROID disease as such . But only the thyroid

gets treated .

Medication does not address the damage done to the Hypothalamus + Pituitary Thyroid [ HPT ] axis

= the key to Hashimoto 's Hypothyroidism .

Medication does not address the damage done by inflammation to thyroid hormone receptors .

If there are not enough receptors , or they are not sensitive enough , it does not matter how much

thyroid medication is taken . [ Thyroxine T4 ] .

The cells cannot use it .

Medication comes in the form of T4 [ Thyroxine ] which our bodies are meant to convert into T3 which

is the active ingredient required by our cells . But if the system is damaged by inflammation , it cannot

make the conversion .

Which is just so dumb . I sound like my students ... their speech patterns .

And the reason I need to supplement my Thyroxin with T3 is that the drug companies make Thyroxin

in the format of [ T4 ] .

T3 = Tertroxin [ artificial T3 ] 20 mcg tablet is made up by Compounding Pharmacists in Australia .

A healthy thyroid produces 80% T4 .Thyroxine

15% T3 . Triidothyrine

also Calcitonin + other smaller hormones such as Diiothyronin [ T2 ] and [ T1 ] Monoidothyronine .

Americans test for T0 , T1 , T2 , T3 , T4 as a matter of course but not here .

Blood tests should cover : TGB , T3 uptake , + T3 , T4 , free T3 , free T4 ,

Oestrogen , testosterone , Vitamin D , fasting glucose ,

Haemoglobin A1c , thyroid anti - bodies .

All of this you would know . How / where do you research ?

How do you self - prescribe Armour ?

T3 = Liothtronine = Reverse Clearance Test . How is this conducted , Susymac ?

I hope that all of this does not sound like a wild lecture . You obviously know your facts . Just

need some confirmation . My T4 levels are 14 . 5 [ ref range 10 . 0 - 19 . 0 ] and just fabulous according to my Endocrinologist . TSH is suddenly out of control . Symptoms are increasing exponentially :

Poor concentration , sore eyes , swollen and shaky fingers , broken sleep , salty water brash from the

medication , breaking and flaking nails , loss of 1/2 of my long and once thick hair , sudden anxiety ,

brief searing headaches , cold feet even in this climate , weight gain of 30 kilos in 12 months which I

have lost by pushing myself through the pain barrier / sharp and steep slopes every day . And constant

and severe muscle pain .

My GP and Endocrinologist treat my triumphs and research as theirs .

I have met and been treated by the most elegant , generous and wise Acupuncturist .

I have an entree into care and concern for the first time in years . Deep muscle massage , cupping

and needle therapy , deep breathing for an hour . Australia is now part of Asia and this rare man

trained in China , Japan and also on this soil . I recommend Acupuncture to you .

The pain is less ...

I will offer you my research sites [ USA and here ] if you are so inclined .

I , as have you , taken charge of my health . I am met at every turn by conservative Medicos

insisting that they are the font of all knowledge . As a teacher / lecturer in Fine Art and Photography

I am very aware that one or some students will " Come last in class ". I have met many along the way in a sometimes blinkered medical profession . My opinions only .

So take care , Susymac

Excuse spelling / punctuation errors and the length of this missive .

Write back if willing .

Denise

XXX

teenarocks profile image
teenarocks in reply to 4esined7

Believe me, US does not routinely test for anything but TSH. I live here. My endo tests for fT4 and fT3 ONLY because I have insisted on it after 20 years of TSH testing alone! But just because she tests it to satisfy me doesn't mean she gives it any credence. She goes by TSH alone. Says fT4 and fT3 are totally unreliable and meaningless. We Hashis sufferers have to fight for what we need wherever we live.

Moggie profile image
Moggie

If I were you I would do some serious research on a more sympathetic (or even knowledgeable) endo and ask for a referral. Don't leave it in the hands of your GP, go and see who you want to see. My first endo appt saw me having so many blood tests that 6 tubes of blood were taken. I was also booked for a heart and bone scan as well as adrenal tests. This is what a good endo should be doing for most people on here but very few get this treatment.

I have seen so many people on here fight to get an endo referral only to be sat in front of someone so useless that they needn't have bothered so do your research.

Have you also had any vitamins tested (VitD, B12, Iron, Ferritin and Folates), if so what were the results.

Moggie x

4esined7 profile image
4esined7 in reply to Moggie

Hello Moggie ,

Major power cut yesterday in this large city , Melbourne , Australia and no computer and

nothing else ... the future visited .

Like you I have always been my primary carer . And I do , indeed , research extensively .

My GP and my present Endocrinologist assume the pose of a Mother Superior in whose presence

I must speak when spoken to ... and then ushered blinking into the light .

This is not my nature .

I have demanded of my GP referral forms upon which I have written the names of specialists I

have tracked down . As a result I have had total body bone scans , blood pooling scans , ultra sound tests , heart tests on the treadmill et al .

I found my new Endocrinologist , Gastroenterologist , Rheumatologist , Physiotherapist this way or

I would not have had all of the important tests without direct action .

The oath sworn by each individual in the medical profession is " First , do no harm " . Hippocrates .

By slothful indifference to new research they are indeed doing harm in the most craven manner .

The overarching opinion within the conservatives of this profession is that they own the bodies

and mind / brain of the people to whom they refer to as patients . I have lost my patience , Moggie .

I now visit the most elegant , wise and ethereal Acupuncturist . Deep muscle massage , cupping ,

deep breathing , acupuncture needles have helped with muscle pain and I saw him only yesterday .

Trained in China and on this soil . This is not voodoo . It has been shown to work in scholarly and peer

reviewed papers by the Mayo Clinic , Cornell , Johns Hopkins and more than 90 Universities devoted

to the highest research that is cutting edge . Brilliant people .

I digress ...

I am now tested for Vitamin D , iron , B12 all fine . I have requested [ as per American protocols ]

TGB , T3 uptake , T3 , T4 , free T3 , free T4 , oestrogen , testosterone , fasting glucose ,

haemoglobin A1c , thyroid antibodies . Americans test for T0 , T1 , T2 , T3 , T4 but not here .

I do not metabolise T4 [ Thyroxine / Eutroxig ] into T3 . TSH = a pituitary hormone and not a thyroid

hormone as such . THS testing is all but useless . Hasimoto 's Hypothyroidism = an inflammation

disease and not a thyroid disease as such . But only the thyroid is treated .

Medication does not address the damage done to the Hypothamamus + Pituitary Thyroid [ HPT ]

axis = the key to Hashimoto' s which is the disease which brings on the condition Hypothyroidism .

Also , medication does not address the damage done by inflammation to thyroid hormone receptors .

If there are not enough receptors , or they are not sensitive enough , it does not matter how much

thyroid medication we take . The cells will not be able to use it .

Thyroid medication comes in the form of T4 which our bodies are meant to convert into T3

which is the active form required by our cells . But if your system is stuffed [ pardon ] by inflammation ,

it cannot make the conversion . Which is just so stupid and this is the reason I want to supplement

my Thyroxine [ Eutroxig here / Armour to you ] with T3 , since the drug companies make it in the format

of T4 .

T3 = Liothyronine is tested by the Reverse T3 Clearance Test . My GP aware of these facts now

but my Endocrinologist [ Fifth ] is set in solid concrete . Endocrinologists are thin on the ground in

this city .

The new guidelines [ TSH ] are now 0 .3 - 3 . 0 , milli - international units per litre . In the USA .

Moggie , we are going to win the right to be heard .

Diet is of the essence . I have eliminated all Goitroids [ goitrous foods slow the thyroid ] . Have eliminated :

Gluten , Dairy , Soy , Caffeine , Sugar , Aspartame , MSG . I am Vegetarian and I miss

broccoli , bok choy , brussel sprouts , pears and ... the list is long ... all goitroids .

For your interest :

Mary Shomon . Books and website . American Thyroid Advocate . Excellent .

Janie A . Bowthorpe . Books and website . American Thyroid Advocate .

Her book " Stop the Thyroid Madness " well researched , succinct and opens eyes and doors .

Sarah Wilson website . Sydney , Australia . For a lighter and upbeat approach to managing her

own Hypothyroidism .

Dr . David Clark . Functional Neurologist . Website and You Tube videos . American .

+ all of the Universities mentioned above .

Stay well , Moggie

Write if you wish

Denise

XX

Moggie profile image
Moggie in reply to 4esined7

Have got to say "RESPECT" for all the hard work, effort and studying you have done in your quest for better health but what makes me really sad is that with all your knowledge and insight into this illness you are still in the hands of a health care professional who hasn't got as clue, which is halting your progress - such a shame.

Found your answers very informative and helpful so thank you.

Moggie x

Thank you so much for your very lengthy and informative message.It is very much appreciated.So much to absorb.........one thing that jumped off the page to me was the connection between Hashimotos and inflammation,which is what I am experiencing and since June when my Levo was gradually raised from 50 - 75-100 my muscle aches have increased.My GP says it's joint pain and to take painkillers .However,my instincts are telling me it's my meds,which is why I'm always querying our generic tablets which are issued here in UK.I shall make enquiries to see if my T3 testing can be brought forward as limping around is making me miserable.I have always been active .....have been doing water aerobics for 22 years and used to love walking in the countryside and by the sea........so inspirational for painting.

My TSH slipped below 1.00 to 0.13 when my Levo was increased to 100 mcgs in August,so it would seem that my T3 test is important.My Endo has adjusted me down to 75-100 alternating to hopefully bring me back up to 1.00.

Thank you for the instructions for importing pictures.....I work from my I Pad so I will have to follow your instructions on my husband's desktop PC.I will try to send you a picture together with a message.

Hope you enjoy your good weather in Melbourne.....one of my friends at my water aerobics has her son and family living there. I haven't travelled to OZ but do have a cousin in NZ and have been fortunate to visit her ....a very beautiful country.

Anyway,good to hear from someone in OZ ....this site is wonderful isn't it?

Keep well and Thank you Denise............Best Wishes Margaret X

NaamiSue profile image
NaamiSue

From personal experience I believe that food is KEY for those of us with autoimmune thyroid conditions (Hashimotos and Graves).

80% of the immune system resides in the GUT. I have just listened to 29 interviews of The Gluten Summit hosted by Dr Tom O'Bryan, it was BRILLIANT! What i learned is auto immune illness can be silent for many years prior to any symptoms, the causes are genetic, oxidative stress or a permeable gut (leaky gut). Gluten being a major contributor to permeability of the gut. If one lives with gluten sensitivity for any length of time we tend to suffer with cross reactivity to other foods that 'look' like gluten, dairy being one, corn another and sadly it can be ALL grains.

If we are sensitive to a food or chemical (cosmetics, cleaning products, air pollution) this will create inflammation which will, in this instance, start in the gut and then spread to any other parts of the body, depending on the weakest area in the individual. It could be the joints, brain, nerves, heart.....anywhere!

When the gut health is impaired this will cause congestion of the liver and affect the gall bladder, both known common problems in hypothyroidism. If the liver is congested then the conversion of the T4 to T3 which occurs in the liver will be compromised and also the detoxification process, potentially making the body more toxic.....and so a vicious cycle commences.......this may also account for so many Thyroidies having adrenal problems. If the body is seriously toxic the adrenals will be on constant high alert. In addition 80% of hormone production and B vitamins are made in the gut.

B12 deficiency can interrupt the communication between the hypothalamus and the pituitary. The b12 deficiency will turn off the B12 receptors and once this happens often it is only through injecting b12 they switch back on.

Inflammation, there are a number of people who deal with this through diet in the functional medicine world, Julie Daniluk, Dr Mark Hyman, JJ Virgin, Dr Tom O'Bryan, Dr Frank Lipman and many many more. It would appear that the first thing a functional doctor will address is diet to reduce the inflammation response.

From my own experience no main stream medical person will help us to reduce inflammation using food, they are locked into pharmaceuticals.

14 months ago I was a hairs breadth away from being diagnosed with Chronic Fatigue Syndrome. Through this wonderful site I went to see a very special Professor, who suggested I had an absorption, conversion and uptake problem. Yes that is how my body felt. He went on to say that he thought I had chronic food allergies.....I was SHOCKED! Dairy came out, then gluten and within days I had energy, HOWEVER, it has been ongoing identifying all the rest! Yes I felt loads better without the 2 main offenders, but as my system got cleaner the lesser offender became noticeable, the list of other offenders is sadly long and includes anything from a plastic lined tin! None of the gluten free products work for me, anything GMO appears to be a NO NO, blueberries, tomatoes, onions, ginger, parsley and loads more. Many of the items interestingly coincide with foods that are poisons for my blood type.

I was T3 only for the 3 years before my consultation with the professor......it worked quite well for the first 12 months and the following 24 were a downhill journey. When I started to clean and heal my gut I was much better on the T3 and actually reduced my dose from 50mcg to 30/40mcg daily. I personally didn't like being T3 only I could feel the GAP when I had run out, it stressed my body if I had too much or not enough. I tried bringing T4 back in 10 weeks after eliminating dairy and gluten and still couldn't tolerate it (weight gain and serious bloating) Couldn't even tolerate NDT! I tried NDT and T4/T3 combo in the summer and am fine with both.....I now use NDT as I did notice my motivation disappear when taking the synthetic T4/T3 combo.

I hope you find your answers soon, sadly waiting for a diagnosis and cure from main stream medicine would seem to be rather evasive! I only visit my GP when there are specific tests that I want and know they do them or for a referral. I find the frustration they cause uses too much of my valuable energy.

Good luck,

Sue

4esined7 profile image
4esined7

Hello Sue,

All that you write is accurate and affirming . And it is diet which affects all that we are and is of our very essence .

You must try to eliminate all of the following :

Aspartame , MSG , Sugar , [ " Pure White and Deadly " 1972 , Dr . John Yudkin , British Scientist and Physiologist his book is a revelation . There are PDF ' s of the book - https: // box.com/s/c485b9d0bfd6a3f ... and

thepiratebay.se/torrent/735... . Dr Yudkin ' s revolutionary work is extolled by Dr . Robert Lustig Neuroendocrinologist at UCFS . On YouTube . He was lecturing in England , at Oxford , earlier this year . ]

Caffeine , Gluten , Yeast , Dairy , Soy , Corn .

Mercury poisons us and I had my 4 amalgam fillings removed years ago . Amalgam is an alloy of mercury .

The environment is toxic . And we know the who , how and the why of all of this poisoning and it increases

exponentially .

And the gut is really our second brain . With an Autoimmune Disease our body recognises cross - reactors which bind to similar anti - bodies and attack . All of the foods mentioned can / will bring on the cross - reaction and explosive attack = Inflammation . Our bodies are at war , literally . And slowly or quickly our thyroid gland is destroyed ... chewed

up and spat out ! The medical profession does not investigate for the primary reason

for Hypothyroidism - AUTOIMMUNITY in all of its forms . Chilling in all of its arrogant ignorance and craven .

Linda Ronstadt has Hypothyroidism and has now developed another autoimmune disease - Parkinson ' s .

She can no longer sing . Play the piano , guitar . And relies on a wheel chair . Cruel beyond belief . And , yes ,

she did her own research . This immunity factor opens our bodies to the attack of all other

autoimmune diseases .

Sue , I have just opened a Thyroid Blood Test request form from the Endocrinologist and scrawled across the section

reserved for Tests Requested are 3 letters TFT . And after all I have said and explained over and over .

I see this as a criminally negligent act . She swore to " First , do no harm " . And she contravenes the

" Human Rights Act " [ c . 2004 ] - Point 1 , Everyone has the right to life ... [ the quality of ] .

I shall copy the act and post it as my next consultation is to be handled via her pager . Her request .

She knows that the game is up . So the search continues .

I offer you Dr. David Clark , Functional Neurologist . USA . Look him up on You tube . Instructive and on top of the game and deeply committed to research . Listen to the Taiwanese study and its findings . The most solid evidence yet

and ignored by lazy medicos who believe that a degree taken years ago offers all of the knowledge required of them .

And they are everywhere . When I asked of my students why they chose Medicine as a field of study the first answer

was most often = STATUS over research and patient concerns ...

I will switch my brain / mind to Dr . Tom O ' Bryan . I am aware of Drs . Hyman , Lipman et al . Will read them again .

I have other research sites if interested . All Scientific papers are peer reviewed . Mayo Clinic , etc .

You are your own advocate . And you display an interesting and questioning mind .

I see practitioners of Eastern medicine more and more . I recommend Chinese trained Acupuncturists .

Holistic . And it works .

Onwards ,

Denise

4esined7 profile image
4esined7

Hello Sue ,

And another thing ...

Diet == avoid all Goitrogens . Goitrous foods slow the thyroid .

Cabbage , kale , brussel sprouts , bok choy ,cauliflower ... a long list .

+ peaches , peanuts , pears , radishes , strawberries , soy, tofu and more ...

The list is writ clearly on the web . With explanations .

And this is , as a Vegetarian , limiting and sad .

I forgot this information on the previous post .

Enjoy your weekend ,

Denise

NaamiSue profile image
NaamiSue

..The goitrogens I believe are OK if well cooked. In my case where my thyroid is now a shrivelled tiny mass of scar tissue and my body is reliant on thyroid medication I am not convinced that goitogens have any bearing.....they would for someone who still has time to save their thyroid gland....I was diagnosed 34 years ago and knew nothing of any of it at that time and did respond to T4 very well, which continued for about 18 years.

Thank you for your information, I am always open to new avenues, being a natural born seeker.

I don't think I mentioned in my original post that I am now very well, functioning like the best and in many cases better. There is fine tuning and if I eat something my body doesn't process I do experience a few subtle symptoms and a slight drop in my energy, hence this is a work in progress.

It is my belief that an individuals health and wellbeing is a constant WIP with or without Thyroid imbalances or auto immune issues....those of us with them have been blessed to work hard to find our own wellbeing and forced out of any 'victim' mentality, which will keep us stuck in poor health.....a little controversial perhaps, but key to recovery.

I wish you well on your journey to wellness and a full recovery,

Sue

PS If you use the 'reply to this' button it will send an email alert to the person you are replying to and make them aware of your reply....

Roadrunnergreg profile image
Roadrunnergreg

Check for low zinc levels. Your FT4 is about right but your FT3 is low, hence low zinc is commonly the problem... 

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