Re: is it time to give up and blame M.E.??

[Guest guest]

Hi Carole

Firstly, i hope the move goes ok - it must be very stressful but i hope you soon

get settled into your new place.

> 30/5/2011 private urine test T3 454 (592-1850) T4 970 (347-1994) T3-T4

ratio 0.5 (0.5-2.0) low

Those are too low. In his book, Dr hertoghe said " watch out for low levels of

T3 (under 1500 pmol/24h) and/or t4 (under 1800 pmol/24h) "

Not only that, but your T3 is below the bottom of the very wide reference range

for T3, anyway. so you are low in T3. it's there, in black and white.

>Ft3 test and the result is bang in the middle of the range at 5.2 I think

the range is something like 2.5-7, she did tell me (phone call), but I didn't

write it in time.

Ok but that is just a snapshot of what is happening at anyone time. The urinary

test shows what is happening over the course of a day. Perhaps later in the

day, T3 is low? Also, my understanding, is that the blood test is level of T3

in the blood, it doesn't mean that the T3 is being used or has been used. If

you have adrenal problems or deficiencies then the body cannot use it properly?

> I don't have my Ft4 and TSH yet, will ring for them tomorrow, but 6/5/2011

tsh 0.03 ft4 12.7 and was raised from 12.5mcg to 25mcg thyroxine at that

point. History tests have been stable tsh 0.1 and ft4 14-16 on average, so

well in range.

Yes, but 12.7 is near the bottom of the range, and 14-16 averaged is 15, which

isn't exactly high, either, is it? Consider what Dr Myhill says:

http://www.drmyhill.co.uk/wiki/Hypothyroidism_-_A_Common_Hormonal_Problem_in_CFS

" There is another problem too which is that the so-called " normal range " of T4

is probably set too low. I know this because many patients with low normal T4

often improve substantially when they are started on thyroid supplements to

bring levels up to the top end of the normal range. Indeed Dr Skinner, who is a

consultant virologist at Birmingham, has shown how many patients with CFS have

low normal levels of thyroxine (T4) and do well when their levels are increased

to average levels. The laboratory I use has a normal range of 12-22 pmol/l and I

am finding many levels coming back at 12-15. In these patients there is an

indication for trying T4, especially if symptoms suggest this. I emphasise that

this is a trial - it does not commit one to thyroid hormones for life. "

> So do I now accept in my case it really is M.E. which I was diagnosed with

2004?

But how does that square with low urinary T3 and other symptoms? What is M.E.

anyway? it doesn't really mean anything does it. do you have symptoms of other

deficiencies, too, like adrenals? Have you done the Hertoghe questionnaire in

this folder?

thyroid treatment/files/MEDICAL%20QUES\

TIONNAIRES/

I think I would want to exhaust all possiblities (testing of all hormones, and

if necessary a trial with a physiological dose of hormones, and treatment of

deficiencies etc) before accepting a diagnosis of ME.

I hope you soon get settled in, maybe think about how you'd like to proceed when

you move?

Chris

[Guest guest]

I would agree with that you still have poor thyroid results. ME is a

diagnosis of exclusion. In other words, you can only be said to have ME if

there is no other possible reason for the fatigue, but you do have another

possible reason. Strictly speaking, a diagnosis of hypothyroidism negates a

diagnosis of ME.

Apart from the levels of thyroid hormone, there are all the co-factors that keep

being mentioned here. Until these are all correct too the whole thyroid system

won't function well.

At the moment my own GP is being a bit funny about the ME or hypothyroid

diagnosis issue. In June when I presented her with a private lab test showing

my TSH to be 24.87 she insisted that all my symptoms were down to the ME.

However, when I saw her recently after 2 months of 25 mcg Levothyroxine and a

blood test she had organised herself (TSH now 15), she was expecting my symptoms

to show improvement, and even said that she sometimes referred people to an

endocrinologist if they had thyroid symptoms but a normal TSH! A bit of a

turnaround there!

Miriam

> I am currently taking 25mcg Levothyroxine daily.

>

> 30/5/2011 private urine test T3 454 (592-1850) T4 970 (347-1994) T3-T4

ratio 0.5 (0.5-2.0) low

[Ed]

[Guest guest]

MODERATED TO REMOVE MOST OF PREVIOUS POST.

MODERATOR

Thankyou Miriam and Chris

unfortunately Dr hertoghe isnt going to sway the NHS. Like most GPs, if results

in range its normal!! I need to hunt for evidence that blood serum FT3 isnt

accurate and someone can still be hypo when it says theyre not. But no time now,

too much to do before move, so short and sweet.

Carole

30/5/2011 private urine test T3 454 (592-1850) T4 970 (347-1994) T3-T4

ratio 0.5 (0.5-2.0) low

>

> [Ed]

>

[Guest guest]

>> unfortunately Dr hertoghe isnt going to sway the NHS.

I agree with you, Carole, but I was responding to your question:

" So do I now accept in my case it really is M.E. which I was diagnosed with

2004? "

And using the examples from Dr H's book (and the Genova lab ranges, which you

fall below on on T3) to give my view that no you shouldn't give up, not how to

sway the NHS etc to give you proper treatment.

>I need to hunt for evidence that blood serum FT3 isnt accurate and someone can

still be hypo when it says theyre not.

I don't think that it's not accurate, but that it's not the be all and end all,

as there are many factors that can affect thyroid uptake etc, and a Ft3 test

done at 9am or 12pm or whenever is only a snapshot at that point in time.

Versus a 24 hour urinary thyroid test which shows what was produced over 24

hours.

I will try and find some evidence and if I find any, post it

chris

>

>

> unfortunately Dr hertoghe isnt going to sway the NHS. Like most GPs, if

results in range its normal!! I need to hunt for evidence that blood serum FT3

isnt accurate and someone can still be hypo when it says theyre not. But no time

now, too much to do before move, so short and sweet.

>

[Guest guest]

1) you may have Central Hypothyroidism .......this can give normal results

2) You may genetically be one of those who cannot convert T4 into T3

...........look up the work of Panicker et al on Google Scholar

3) demand a referral to the top ME specialist preferably whoever suceeded Betty

Dowsett

If it was not for her explosion " who the hell said this was ME its thyroid ?

all those years ago my Husband would be dead

Pat

[Guest guest]

Hi Carole,

Apart from what has been said so far there is also the consideration that you

may have some problems with thyroid hormone processing that are occurring at an

entirely cellular level. If this was the case then no blood test will reveal it.

Your tests will continue to come back looking normal but your symptoms would

remain.

I'd start by asking to push the thyroid hormone up a little higher as there is

more scope for this with your current results. However, if you symptoms do not

improve then some form of thyroid treatment that contains T3 may be needed.

I'm sure you've been given all the advice already about having a wide range of

nutrients tested. You've also probably been told in the past to keep regular

records of your body temperature, heart rate as well as symptoms. I

f you temp remains very low and your symptoms are severe after your TSH

approaches 1 with high levels of FT3 and FT4 then this may suggest a cellular

issue and natural thyroid or an T4/T3 combination would be the next obvious

step.

Don't accept the ME story. I was told that as well. My endo at the time said he

had a nice group of thyroid patients who appeared to have ME that got together

once a week - an ME support group. He asked me if I wanted to join! I told him

that I didn't have ME and that I had a fixable thyroid problem that needed more

investigation. His growing group of ME people were the proof that we was a lousy

diagnostician!

ME is an umbrella term for a collection of symptoms that may have multiple

causes. Causes may include post-viral issues, weak immune system, undiagnosed

hypothyroidism, impaired cellular response to thyroid hormone (cellular level

issues), extreme adrenal fatigue, and a host of other things.

In your case I don't buy it. You already know you have hypothyroidism - your

doctor shouldn't be looking for a nice label he can give you to stop him having

to get off his a**e and do some work.

Good luck,

>

> Hi,

[Guest guest]

NEVER accept a diagnosis of ME - most people who have been given

a diagnosis of ME, CFS or fibromyalgia have found that treatment using the

active T3 gives them back their normal health again. Read Dr Lowe's web

site. Blood tests ONLY show you what level of thyroid hormone is in the blood

at that particular time the blood was drawn. The 24 hour urine test checks your

level of thyroid hormone that has been used by the tissues and in the cells

during the previous 24 hours, and this is the test you need. Thyroid hormone

DOES NOTHING IN THE BLOOD - IT IS THE CELLS WHERE THE ACTION OCCURS.

Luv - Sheila

" So do I now accept in my case it really is M.E. which I was diagnosed

with 2004? "

>

> unfortunately Dr hertoghe isnt going to sway the NHS. Like most GPs, if

results in range its normal!! I need to hunt for evidence that blood serum FT3

isnt accurate and someone can still be hypo when it says theyre not. But no

time now, too much to do before move, so short and sweet.

>

[Guest guest]

> NEVER accept a diagnosis of ME - most people who have been given a diagnosis of ME, CFS or fibromyalgia have found that treatment using the active T3 gives them back their normal health again.

I’m sorry but that sentence is quite simply incorrect and misleading. ME has been classed by the World Health Organisation as a neurological condition for over 40 years; in reality it is a multi-system failure, a neuro-immune disease, affecting every system and part of the body. ME is characterised by neurological, immunological, gastrointestinal, cardiovascular and musculoskeletal features.

Now it is true that most people with ME do have thyroid / adrenal problems and that if these problems are correctly treated (which sadly rarely happens) there can be some improvement – but, as there is far more to ME than endocrine problems, there will not be a return to full health. Anyone who does get completely better with thyroid / adrenal treatment alone is unlikely to have had true ME in the first place.

Please take a look at the list “Some of the abnormalities that have been demonstrated in ME†- http://www.meactionuk.org.uk/MECFS_peer-reviewed_research_data.htm and go through the documents mentioned at the bottom. You will soon see evidence of ME being a devastating, multi-system illness.

Hazel.

www.oneagleswings.me.uk http://oneagleswingsme.blogspot.com/

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[Guest guest]

>Anyone who does get completely better with thyroid / adrenal treatment alone is

unlikely to have had true ME in the first place.

I think that was the point that was being made :-) - ie, some people are given

this (mis)diagnosis of ME when they are actually hypothyroid or have adrenal

issues all along.

chris

>

> I’m sorry but that sentence is quite simply incorrect and misleading. ME

has been classed by the World Health Organisation as a neurological condition

for over 40 years; in reality it is a multi-system failure, a neuro-immune

disease, affecting every system and part of the body. ME is characterised by

neurological, immunological, gastrointestinal, cardiovascular and

musculoskeletal features.

>

[Guest guest]

After three diagnoses of CFS/ME, two by consultants and one by my GP and being

told it was pointless carrying out any other tests, I am now nearly better,

using the information I have gained from this and other websites.

I have fixed, with no help from the NHS, my B12 and D deficiencies, am raising

my ferritin from the very bottom of the range and am gradually fixing my thyroid

issues with T3 prescribed by the NHS under an exemption certificate. I am also

taking one NAX a day to keep my adrenals on track.

The IBS I have had since the 1970s has gone, my hair is growing in, my nails are

long and strong for the first time since puberty, my psoriasis has gone after 20

years, yet three highly qualified doctors told me I had ME/CFS and wanted to put

me on the scrapheap.

I know many more ladies of a certain age in the same situation who lack the

strength to do the necessary research and to fight the system. It is a national

disgrace!

D

> >Anyone who does get completely better with thyroid / adrenal treatment alone

is unlikely to have had true ME in the first place.

>

[Ed]

[Guest guest]

Hi

i also have been diagnosed with M.E and Fibro , one diagnosis from one of the

leading professors in M.E not a chance i refuse to believe it i'm getting better

on T3 much better now i need to know whats happening with vitamins and minerals.

Great to see a fellow sufferer ditch the M.E headline!!!!!!

Its disgusting that we get labelled and dumped in a skip and left to live with

it

well done you

i'm following you fast whooop whooop

love sha xxxxxxxx

>

> After three diagnoses of CFS/ME, two by consultants and one by my GP and being

told it was pointless carrying out any other tests, I am now nearly better,

using the information I have gained from this and other websites.

>

[Guest guest]

Hi,

I was told by two specialists that I had ME.

I didn't have ME.

ME is a collection of symptoms with no underlying absolute and agreed cause.

Whilst there are many patients with ME for whom no doctor can find any cause for

their condition (because if they did they would have a chance of treating it),

there are many, many, many, many ME diagnoses which could be more properly

treated.

It is horrible that some people are given this ME label when they could actually

recover with correct hormonal treatment. I have no idea what percentage of ME

patients fall into this category and what percentage fall into the 'you just

have to live with it' category. BUT I KNOW SOME FALL INTO THIS CATEGORY. THE

ONES THAT ARE TREATABLE WE ARE REACHING OUT TO. Let the message go out. To not

allow this is to deny recovery to some people.

One of the real problems with ME is that eventually because of a million reasons

some people begin to see ME as a badge that they wear that defines them. This is

their choice. I chose to say f**k it I don't believe I'm an ME patient. Don't

give me that label. Don't ask me to your ME support group. Yes, I know I can't

walk up my stairs at home without help. Yes, I know I have to sleep for 4 hours

in the middle of each day. Yes, I know I pass out all the time and that I can't

do anything useful anymore. But NO, I don't have ME - LOOK AGAIN YOU DORKS! GET

SMART - INVESTIGATE.

No, they didn't investigate. I did it myself and succeeded.

Now, I play tennis 3-5 times per week and have energy to burn. I didn't have ME.

Many other ME diagnosed patients don't have ME. They have a condition that

hasn't been uncovered. This might be some nutrient deficiency that is chronic.

It might be a requirement for T3 - real thyroid hormone that acts. It might be

hypoadrenia or hypopituitarism. It might be an immune system under assault from

gluten or dairy or something else. THE FACT REMAINS THAT SOME ME DIAGNOSES ARE

WRONG and people should not just accept it - they should be looking for answers.

Rolling over and just accepting an ME label and taking the ME guidelines WON'T

FIX AN UNDERLYING BIOCHEMICAL PROBLEM and people may be stuck like that for

life.

I don't care if this applies to only 5% of ME patients (it might be 40% - who

knows?) but those 5% need the solution that is possible for them.

Treating these people is a good thing - not a bad thing. If you want to remove

their ME badge from them when they are well - I don't care. Just help to fix the

ones you can be fixed.

Ex-ME diagnosed Patient

>

[Guest guest]

you go paul, every word is true !!!!! and the way i've looked at this illness

now for the last 6 months, they've had 8 years of my life they are NOT having

anymore !!!!

love sha xxxxxx

>

> Hi,

>

> I was told by two specialists that I had ME.

*** Please remember to snip old messages!! ***

[Guest guest]

Yours is a really typical story Dolly.

I'd like to be effusive and say how brilliant this is.

At a personal level - for you - it is awesome - you beat the bloody system Dolly

- more power to you and well done. I actually feel I am tearing up reading your

success and imagining what it cost you to achieve this. Amazing.

On a more general level this highlights how poor the system is and how ready it

is to take the ME badge out of the drawer and STICK IT ON THOSE PEOPLE THAT THE

DOCTORS CAN'T WORK OUT. Yes, the doctors have failed to be informed. They have

failed to be up to date with research. They have failed to use their brains and

consider ALL of the issues that can cause these types of symptoms. They have

totally failed to consider alternative ideas and possible nutrient and hormonal

causes of these types of problems.

SO, at a more general level - your recovery SHOULD BE A STANDARD FEATURE OF OUR

HEALTH SYSTEM. It isn't so well done to you and crap job to them.

>

[Guest guest]

The ME diagnosis has obvious touched a nerve with a lot of people.

It certainly brings it all back to me.

Maybe this should suggest something to us all. I'm not sure what at the moment

because the emotions are all to close to the surface.

Maybe the parliamentary debate should be about 'what do we do when we get shit

diagnosis work done by the NHS?'.

I've only had two major health issues in my life. I've had to solve both on my

own - due to shit diagnosis work and doctors who aren't trained to actually

think in a way that leads to proper diagnoses. Almost all of the doctors I've

seen are like well trained plumbers (no offence to any plumbers!). They follow

the strict procedures the've been taught to follow.

When people with complex problems turn up at their doors that require real

thinking then most of them (the vast majority) can't do it. They aren't used to

doing it and they aren't trained to do it.

An example of this is contained within my paper on histamine which can be found

at the bottom of this link:

thyroid treatment/files/PAUL'S

PERSONAL EXPERIENCE.T3 /

We need some doctors somwhere who are good are diagnosing. There don't appear to

be many.

>

>

[Guest guest]

Hi ,Consultant Physicians ought to be available in all hospitals; they ought to be the first port of call if you think they'll 'miss it' in Endocriminology.Bob>> The ME diagnosis has obvious touched a nerve with a lot of people.> It certainly brings it all back to me.

[Guest guest]

The danger of accepting a diagnosis of ME is that other problems such as adrenals can become much worse if ignored. A year after being diagnosed with ME, I have found that I have really serious adrenal problems - thyroid issues too. I'm now on some pretty heavy duty medication which might have been avoided had the real problem of adrenals been addressed in the first place. I've been bedridden for a year and even now have 4 long rests each day. I know that the NHS can't/won't take adrenal issues seriously but unless we keep on questioning these assumptions that the health professions make, we won't raise any awareness of the problems patients are facing.Good luck with the move.Alison

[Guest guest]

Hi

on the M.E association news letter it is now clearly stating that they are

finding 1000's of people first thought to be and diagnosed m.e and fibromyalgia

are now finding they are hypothyroid. I also have been very fortunate to have

had one of the first leading professors in the uk to specialise in M.E and is

continually looking for treatments and cures for M.E, It was also proved in

lynne gilderdales book that she herself was found to have hypothyroid but it was

already too late to treat as her pitutary gland was shrunk to an extreme tiny

size.

Its said in many circles of the medical profession that they can't help

thinking when they do find the cause of M.E it is highly likely to be linked to

the thyroid gland.Until they actually do find the cause they are treating a

blind illness. I question my professor on many occasions and not even he will

say a definate no to it being linked to the thyroid.M.E is an awful illness ,

i've been more or less bedridden for years with M.E symptoms and delved very

much into the illness as i've fought for a cure in myself. I am just lucky i'd

already had the hypothyroidism diagnosed 6 months before the M.E and

fibromyalgia.

Until a definate diagnosis has been made we can only speculate. I saw a

neurologist who refused that it was a neurological illness apart from it was all

in my head and i was making myself ill.

M.E is still a very grey area, when myself and the support group are campaigning

people laugh, m.ps still don't want to know and the benefits department don't

even believe its a real illness, i've been through all that with them.

So i believe don't believe you have M.E until ALL possible tests have been

exhausted , which in my case like many others i know haven't been and its only

now i can see this and am able to start to fight to get my health back .

love Sha xxxx

>

> > NEVER accept a diagnosis of ME - most people who have been given a diagnosis

of ME, CFS or fibromyalgia have found that treatment using the

[Guest guest]

Bob,

I'd put you in charge of structural management changes regarding thyroid

problems in an instant - good man!

Yes, proper diagnosticians should be present and be available for endos and

confused doctors to send their patients to. These people need to have ABILITY as

well as TRAINING. Aptitude for diagnostic work is really important.

More power to you Bob!!!!!

>

> Hi ,

[Guest guest]

Hi just to add a couple of things

Dr Derry in Canada pointed out that ME CFS and fibromyalgia only appeared

after the TSH test was introduced . Drs hate going back on a diagnosis [in

my experience] . Hence a close friend had ME for years-mother hypo -on

disability benefits now hypo but any remaining symptoms when on only 50 T4 is

the ME . Lastly ,yes, I agree Physicans in hospitals would be great but would

they dare tread in the endos territory . I did not have any of these diagnoses

but it needed T3 to get rid of numerous hypo symptoms . I don't think anyone can

judge until we are all properly and adequately treated.

[Guest guest]

In addition to my other comments I'd like to add that far too few doctors

involved in ME treatment are up to date with everything that is happening in the

world that relates to ME.

My belief as a scientist is that ME is a collection of symptoms. Over time we

will find that multiple diagnoses will be possible for people with these

symptoms and that eventually (perhaps 20-30 years hence) no one will need to

wear the badge of ME. All that will be left will be a number of disparate

conditions that can all lead to symptoms that today we refer to as ME.

People with the diagnosis of ME should not feel good about it - this diagnosis

is simply the result of the failure of medicine today to understand all the

underlying causes.

I've met too many people who, for whatever reason, wear the ME badge and I see

this as a reflection of the failure of modern medicine. Moreover, modern

medicine prefers to be complicit in the the diagnosis of ME rather than spending

more effort attempting to uncover the multiple causes for these symptoms. More

intellectual effort is required - smarter work not more work.

For those people with ME diagnoses I have the greatest sympathy. Some people are

able to drag themselves out of this. These people are no less ME patients than

the ones that can't drag themselves out. Anyone that tries to say the opposite

is clearly fixated with the ME badge of courage. Many people aren't able to

recover. They are at the mercy of modern medicine and I worry about how this

might work out for them. It is pure hell to have these symptoms and I know a lot

of people who are condemned to this Some of these people are open minded about

possible causes of ME. However, some have been brainwashed into thinking that ME

is ME is ME is ME ..... you get the picture.

Modern medicine has been complicit in creating the illusion that ME patients

can't recover and that they can only survive. This is so much BS. I don't want

to hear any more of this rubbish. Doctors and patients should continue to look

optimistically for solutions. Anything less is just total defeatism. This

doesn't mean that basic advice on having good nutrition, sleep, exercise and

routines shouldn't be followed - this is good advice for all of us.

Just don't start wearing the ME badge as if it is something that is a life

sentence - it isn't right and it doesn't help others, although it is comforting.

>

> >

[Guest guest]

totally and emphatically agree !

>

> In addition to my other comments I'd like to add that far too few doctors

involved in ME treatment are up to date with everything that is happening in the

world that relates to ME.

[Ed]

[Guest guest]

Thanks for this - you have hit the nail on the head and

this is what we are talking about. There are literally tens of thousands being wrongly

diagnosis as suffering with ME and who are being left without any treatment

because doctors know little to nothing about the functioning of the thyroid and

the adrenals. Over the years, I have seen such people coming to our forum who

had been diagnosed with ME and who clung onto that diagnosis, refusing to

believe their thyroid or adrenals had anything to do with their suffering, only

to eventually learn that this WAS their problem and who were then treated

appropriately, got their health back and went back to paid employment or to

their previous good health. We need to stay realistic about this and this goes

also to those being diagnosed with CFS and fibromyalgia.

Luv - Sheila

>Anyone who does get completely better with

thyroid / adrenal treatment alone is unlikely to have had true ME in the first

place.

I think that was the point that was being made :-) - ie, some people are given

this (mis)diagnosis of ME when they are actually hypothyroid or have adrenal

issues all along.

chris

>

> I’m sorry but that sentence is quite simply incorrect and misleading. ME

has been classed by the World Health Organisation as a neurological condition

for over 40 years; in reality it is a multi-system failure, a neuro-immune

disease, affecting every system and part of the body. ME is characterised by

neurological, immunological, gastrointestinal, cardiovascular and

musculoskeletal features.

>

[Guest guest]

Hi Hazel - we have had this discussion before. Please note that

I wrote " MOST people who have been given a diagnosis of ME, CFS or

fibromyalgia….. " not ALL. The sentence I wrote is correct.

Luv - Sheila

- most people who have been given a diagnosis of ME, CFS or

fibromyalgia have found that treatment using the active T3 gives them back

their normal health again.

I’m sorry but that sentence is quite simply incorrect and

misleading. ME has been classed by the World Health Organisation as a

neurological condition for over 40 years; in reality it is a multi-system

failure, a neuro-immune disease, affecting every system and part of the

body. ME is characterised by neurological, immunological,

gastrointestinal, cardiovascular and musculoskeletal features.

,___

[Guest guest]

I will add to this…….ME, CFS and fibromyalgia were

never heard of before synthetic levothyroxine was manufactured. All patients

suffering symptoms of hypothyroidism were treated with the natural thyroid

extract (been in use now for over 100 years). It was when this was removed and

patients had to take T4-only that many started missing the T3, T2, T1 and the

calcitonin that you get in natural thyroid extract. Patients started

complaining of all these different symptoms they had never had before, so new

diagnoses started to develop - now tens of thousands who can't get well on

T4-only are being given a wrong diagnosis.

Luv - Sheila

Hi just to add a couple of things

Dr Derry in Canada pointed out that ME CFS and fibromyalgia only appeared

after the TSH test was introduced . Drs hate going back on a diagnosis [in my

experience] . Hence a close friend had ME for years-mother hypo -on disability

benefits now hypo but any remaining symptoms when on only 50 T4 is the ME .

Lastly ,yes, I agree Physicans in hospitals would be great but would they dare

tread in the endos territory . I did not have any of these diagnoses but it

needed T3 to get rid of numerous hypo symptoms . I don't think anyone can judge

until we are all properly and adequately treated.