Re: Advice anyone please?

[Guest guest]

Alice,

You wrote:

>

> I have been on levothyroxine since 1997 and am not feeling well on

> it. At the moment I am on 125 mcg....

Why don't you simply try asking for a larger dose of the T4 first, since

that is what your doctor originally prescribed? All four of my hypoT

female relatives took 200 mcg per day at one time. My Mom is now down to

125 mcg., but she is in her 80s.

Chuck

[Guest guest]

Hi Chuck

I think it is because members have asked their doctor for a further increase in their L-thyroxine that they have realised this simply is not the medication their body requires. They are needing to look beyond that and find out the cause for their remaining symptoms. You and your family appear to be lucky in that the synthetic L-thyroxine works well for you all, but for a large minority, and I mean a large minority, it simply does not work for everybody. Why are thyroid support forums so overflowing with members if L-thyroxine worked for them. Why is it that after there has been articles in newspapers, magazines, television about hypothyroidism that the switchboards of newspapers are jammed, that all the forums are suddenly inundated with new members, that I, personally, received over 400 telephone calls when one magazine 'Woman's Weekly' printed my telephone number as a help line after an article on hypothyroidism. I am still occasionally getting calls from that one article. The majority of calls are from sufferers unable to get a diagnosis or on L-thyroxine for years and still suffering symptoms. Oh, how I wish the answer for all of them was to just ask their doctor for an increase. As I said, I am working at the pit face here.

Luv - Sheila

Alice,You wrote:> > I have been on levothyroxine since 1997 and am not feeling well on> it. At the moment I am on 125 mcg....Why don't you simply try asking for a larger dose of the T4 first, since that is what your doctor originally prescribed? All four of my hypoT female relatives took 200 mcg per day at one time. My Mom is now down to 125 mcg., but she is in her 80s.Chuck

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[Guest guest]

Hi Chuck and Alice,

I do not think that an increase in L-thyroxine is always the answer,

although it might help Alice. I don't know. It is worth having a

blood test first to see where your TSH, free T4, free T3 are at the

moment. I am on 125mcg of thyroxine, yet when I increased my dose

to 150mcg, I felt quite dreadful and my free T3 levels dropped to

below the normal reference range. I now supplement my L-thyroxine

dose with a bit of T3, but still haven't found the 'ideal' dose for

me. A close family member also has many adverse symptoms taking L-

thyroxine alone and has been unwell for years. I wish it was as

simple as increasing our dose of L-thyroxine to feel better. If

that was the case and I felt fine, I wouldn't be writing this right

now. L-thyroxine alone has helped a couple of people I know, but it

doesn't seem to work well for certain people, including me.

P

> You wrote:

Alice wrote: ...I have been on levothyroxine since 1997 and am not

feeling well on it. At the moment I am on 125 mcg....

Chuck wrote: Why don't you simply try asking for a larger dose of

the T4 first, since that is what your doctor originally prescribed?

All four of my hypoT female relatives took 200 mcg per day at one

time. My Mom is now down to 125 mcg., but she is in her 80s.

Chuck

[Guest guest]

,

Maybe that explains the chronic neck, shoulder hip and pains all down

my right side which I have been getting on and off for years.

Alice.

> Hi chuck,

> If you can't convert T4 to T3 then the unconverted T4

causes joint pain which can become very hard to live with and any

dose increase will make it even worse. See http://www.drlowe.com

There is even too much T4 in Armour for me- I have to top up with T3

to feel well.

>

>

>

>

> Alice,You wrote:> > I have been on levothyroxine since 1997 and am

not feeling well on> it. At the moment I am on 125 mcg....Why don't

you simply try asking for a larger dose of the T4 first, since that

is what your doctor originally prescribed? .Chuck

>

>

>

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>

[Guest guest]

Do blood tests tell you if you can or cant convert to T3 and what would you look for, low T3?> > I have been on levothyroxine since 1997 and am not feeling well on> it. At the moment I am on 125 mcg....Why don't you simply try asking for a larger dose of the T4 first, since that is what your doctor originally prescribed? .Chuck> > > > No virus found in this incoming message.Checked by AVG -

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[Guest guest]

Alice - this is what happened to me. I had severe pain in my lower back, shoulder and under both heels. I used to have to lie down for 2 to 3 weeks at a time on a hard floor (all beautifully cushioned of course) because I was unable to move because the pain was excruciating. The GP told me I had a prolapsed disc. I was OK when I was standing or walking but once I sat down in my armchair or in the car, it was almost impossible to get out again because of the pain. I would collapse onto my knees and crawl round to the back of my chair and gradually pull myself up to standing position, wait for a few moments for my back to 'settle' and then I was OK. I suffered with this for over a year, the pain gradually getting worse. Eventually, I saw a private hormone specialist who told me I was not converting the T4 to the active T3. He started me on Armour which contains T4, T3, T2, T1 and calcitonin. Within 9 days of starting it, the pain disappeared, it was wonderful, and to this day, 5 years later, the pain has not returned.

Luv - Sheila

Maybe that explains the chronic neck, shoulder hip and pains all down my right side which I have been getting on and off for years.> Hi chuck,> If you can't convert T4 to T3 then the unconverted T4 causes joint pain which can become very hard to live with and any dose increase will make it even worse. See http://www.drlowe.com There is even too much T4 in Armour for me- I have to top up with T3 to feel well.>

..

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[Guest guest]

,

Excess T4 can cause the system to adapt by converting a greater portion

to RT3 than normal. This blocks the benefits of T3 and causes hypoT

symptoms, including joint point. However, I did not see any evidence

that Alice was having conversion problems, but her TSH suggested she was

still just under treated.

Chuck

>

>

>

> Hi chuck,

> If you can't convert T4 to T3 then the unconverted T4

> causes joint pain which can become very hard to live with and any dose

> increase will make it even worse....

[Guest guest]

,

You wrote:

>

> Do blood tests tell you if you can or cant convert to T3 and what would

> you look for, low T3?

As I mentioned before, there are several types of conversion problems.

The most straightforward is marked by high T4/FT4 but relatively low

T3/FT3.

Since T4 also has metabolic activity and brings TSH down, it is not

really directly toxic. Rather the issue is with its conversion into RT3

rather than T3. If anything, it is the RT3 that is toxic, but too much

T4 can trigger or aggravate this. The more common result of too much T4

is hyperT.

Chuck

[Guest guest]

Hi Chuck,

Don't know if it always relates to excess T4. In my case, my free

T4 levels have always been within the reference range but Reverse T3

is way too high (currently 642 in ref range of 170-450 pmol/L) and

free T3 dropped below 'normal' reference range until I supplemented

my thyroxine with T3. Even with thyroxine and T3 supplementation,

my Reverse T3 levels continue to rise. Still trying to work out why

free T3 levels would increase AND Reverse T3 levels would continue

to increase. I know we have discussed this before so you don't need

to answer, but thought I would comment on your discussion about

excess T4 converting to RT3.

P

>

,

Excess T4 can cause the system to adapt by converting a greater

portion to RT3 than normal. This blocks the benefits of T3 and

causes hypoT symptoms, including joint point. However, I did not see

any evidence that Alice was having conversion problems, but her TSH

suggested she was still just under treated.

Chuck

[Guest guest]

Hi Chuck,

Thank you for your original reply to my posting. I am unsure whether

an increase in my Thyroxine is the answer to my problems at the

moment. I am seeing the GP again on Weds and will try to push for a

free T3 blood test to check if the conversion from t4 to t3 is

working; I cannot remember if I said before; but he said when you are

on Thyroxine the Endo normally only tests for TSH and I think free

t4. So I am kind of up against a brick wall there.

To be honest I hold little hope for the help that the Gp can offer me

at moment and I am mainly visiting him for blood test results, more

blood tests and a sick note. I hold more hope in the outcome of

seeing Dr P next month.

One thing I have noticed that could be a sign of not enough Thyroid

Hormones is that I am getting my words mixed up in speech. For

example " Morning good " when it should be the other way round.

Alice

> >

> > I have been on levothyroxine since 1997 and am not feeling well on

> > it. At the moment I am on 125 mcg....

>

> Why don't you simply try asking for a larger dose of the T4 first,

since

> that is what your doctor originally prescribed? All four of my

hypoT

> female relatives took 200 mcg per day at one time. My Mom is now

down to

> 125 mcg., but she is in her 80s.

>

> Chuck

>

[Guest guest]

....which is why Alice and everybody who is not doing well on thyroid replacement need to look to

1) low adrenal reserve (this is very common - but still not recognised by mainstream endocrinologists) The production of T4, its conversion to T3 and the binding requires a normal amount of adrenal hormones, notably cortisone)

2) Systemic candidiasis, a yeast which causes skin infections almost anywhere in the body and which invades the lining of the lower part of the small and large intestine. Here the candida sets up residence in the warmth and the dark and demands to be fed - loving starches and sugars. Candida can make you suffer terrible sweet cravings. Candida produces toxins which cause many symptoms of exhaustion, headache, general illness, which interfere with the uptake of thyroid and adrenal therapies. Sometimes the test results can be very high, and make successful treatment with thyroid hormone difficult to achieve until adequately treated.

3) low ferritin

4) low vitamin D

5) too low a dose of L-thyroxine, or only partial response to L-thyroxine, or food allergies such as gluten, the protein fraction of wheat, cross reacts with the thyroperoxidase enzyme (which makes thyroxine) and shuts down. So allergy to bread can make you hypothyroid. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake.

Again, it should never be assumed that L- thyroxine monotherapy works for everybody. it simply does not. If it doesn't, the above should be looked into as a possible cause.

Luv - Sheila

However, I did not see any evidence that Alice was having conversion problems, but her TSH suggested she was still just under treated.Chuck> > > > Hi chuck,> If you can't convert T4 to T3 then the unconverted T4 > causes joint pain which can become very hard to live with and any dose > increase will make it even worse....

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[Guest guest]

Hi P,

Thank you for your reply. I certainly do not want to risk feeling any

worse from taking more thyroxine as you said you did (I feel rubbish

enough as). If anything I would like to come off it and try Armour. I

am awaiting to see what Dr P says in Oct. And when I see the Gp on Weds

I will try to push for a free t3 test.

Alice

patersonia wrote:

>

> Hi Chuck and Alice,

I am on 125mcg of thyroxine, yet when I increased my dose

> to 150mcg, I felt quite dreadful and my free T3 levels dropped to

> below the normal reference range.

[Guest guest]

Hi Sheila,

Thank you for your reply. I have been to the Gp countless times in

the past for the pain and problems with my neck, shoulder and hip on

my right side and going down my right leg. One GP even referred me to

a Physio. I have spent a lot of money in the past going to see the

Osteopath, having Tuina massage (a type of Chinese massage).

It makes sense to think looking back that all of these problems are

caused by my Thyroid problems not being treated correctly. As I did

not have problems like this before being diagnosed.

Love Alice

sheilaturner wrote:

>

> Alice - this is what happened to me. I had severe pain in my lower

back, shoulder and under both heels. I suffered with this for over a

year, the pain gradually getting worse. Eventually, I saw a private

hormone specialist who told me I was not converting the T4 to the

active T3. He started me on Armour which contains T4, T3, T2, T1 and

calcitonin. Within 9 days of starting it, the pain disappeared, it

was wonderful, and to this day, 5 years later, the pain has not

returned.

>

> Luv - Sheila

>

>

>

>

> Maybe that explains the chronic neck, shoulder hip and pains all

down

> my right side which I have been getting on and off for years.

>

[Guest guest]

I definitely think a more Holistic approach needs to be taken in

treating Thyroid Disease (conventional medicine generally ignores

this). I was tested for Coeliac disease which came back negative; but

I think I may have intolerance to wheat which I have been trying to

avoid. The GP said he thinks I have IBS. All I know is that i have

been having terrible bloating, gas etc along with everything else.

If anyone is interested look on this website below and it says

Coeliac (wheat/ gluten intolerance) is an Autoimmune disease, well

my Thyroid Disease is also Autoimmune. There is definitely a link, I

did have some other web links which I will try to find again if

anyone's interested.

Love Alice

http://www.coeliac.co.uk/

sheilaturner@...> wrote:

>

> ...which is why Alice and everybody who is not doing well on

thyroid replacement need to look to

1) low adrenal reserve

2) Systemic candidiasis.

3) low ferritin

4) low vitamin D

5) too low a dose of L-thyroxine, or only partial response to L-

thyroxine, or food allergies such as gluten, the protein fraction of

wheat, cross reacts with the thyroperoxidase enzyme (which makes

thyroxine) and shuts down. So allergy to bread can make you

hypothyroid. Certainly allergic response to certain foods can affect

adrenal function and imperil thyroid production and uptake.

> Again, it should never be assumed that L- thyroxine monotherapy

works for everybody. it simply does not. If it doesn't, the above

should be looked into as a possible cause.

>

> Luv - Sheila

>

>

[Guest guest]

Good idea re asking for a free T3 test Alice.

P

.........And when I see the Gp on Weds I will try to push for a free t3

test.

[Guest guest]

Hi again Alice,

I cut out gluten for the reasons you mentioned + more. My coeliac

tests came back as negative too. I used to get extremely fatigued

when I ate products that contained gluten. Also felt quite down and

wanted to sleep for hours. I have been on a STRICT gluten free diet

for roughly the last decade and it is worth it. Your local coeliac

society should be able to supply you with a products list, to help you

on your way if you wish to continue being 'gluten free'. At the

beginning of a gluten free way of living, it is hard to believe the

amount of products that contain gluten. No more rye, barley, oats.

No more soy sauce with wheat (try tamari - much more yummy). Even the

way that some nuts are prepared, mean they have wheat coatings! Hot

chips are often coated with wheat to make them crispier, prepared

mustard often contains gluten (only use mustard seeds), etc etc

Out of interest, I have found that cutting out some other

carbohydrates & sticking to a mainly fruit, veg and (some) meat/dairy

diet has helped improve my energy levels over the last few weeks.

Much less bloating, flatulence and the rest. More spring in my step.

Hope it lasts!!!!!

Re the holistic approach you mentioned for thyroid related problems.

I also try and eat organic food (when possible and available) and use

very 'mild' skin care and hair care products. I've also stopped dying

my hair in the hope that not applying chemicals to my scalp may make

me feel a bit better. I use simple products to clean my house

(minimise the 'nasties') etc. Everything to try and get better.

P

>

> I definitely think a more Holistic approach needs to be taken in

> treating Thyroid Disease (conventional medicine generally ignores

> this). I was tested for Coeliac disease which came back negative;

but I think I may have intolerance to wheat which I have been trying

to avoid. The GP said he thinks I have IBS. All I know is that i have

been having terrible bloating, gas etc along with everything else......

[Guest guest]

Hello Pat,

you wrote:

> Out of interest, I have found that cutting out some other

> carbohydrates & sticking to a mainly fruit, veg and (some)

meat/dairy

> diet has helped improve my energy levels over the last few weeks.

> Much less bloating, flatulence and the rest. More spring in my

step.

> Hope it lasts!!!!!

Have faith it will last - I have been doing the low GI carb and

plenty of protein diet since last April. It has helped me

tremendously. My weight has come way down - am up to 15lbs off in

that time. My energy levels are great, hair is shining, and

generally think Oh my God haven't felt this good since I was in my

30's.

I too try to eat the best that I can buy but this does not always

mean organic and also keeping away from anything that has chemicals

in it - more natural house cleaning products fall into this category.

..........

[Guest guest]

Hi P,

Thanks for that info. I thought I was doing the right thing eating

rye bread; but it sounds like I should avoid that too. I do try to

avoid a lot of chemical personal care products, such as aluminum

deodorant, toothpaste that contains soduim lauryl sulphate etc and

chemicals around the house.

Love Alice

patersonia@...> wrote:

>

> Hi again Alice,

>

> I cut out gluten for the reasons you mentioned + more. My coeliac

> tests came back as negative too. I used to get extremely fatigued

> when I ate products that contained gluten. Also felt quite down

and

> wanted to sleep for hours. I have been on a STRICT gluten free

diet

> for roughly the last decade and it is worth it. Your local coeliac

> society should be able to supply you with a products list, to help

you

> on your way if you wish to continue being 'gluten free'. At the

> beginning of a gluten free way of living, it is hard to believe the

> amount of products that contain gluten. No more rye, barley,

oats.

[Guest guest]

,

It is good to hear that you are doing really well. Thanks for

sharing. Gives me even more of a reason to stick to it. I'm quite

determined when I want to be, so I've made it a lifestyle change. I'm

noticing positive changes already & my horrific cravings for sugar

have lessened (not gone away yet, but they have decreased thank

goodness).

P

>

> Have faith it will last - I have been doing the low GI carb and

> plenty of protein diet since last April. It has helped me

> tremendously. My weight has come way down - am up to 15lbs off in

> that time. My energy levels are great, hair is shining, and

> generally think Oh my God haven't felt this good since I was in my

> 30's.

[Guest guest]

Oh Sheila how right you are and how important this forum is!! Without

it I would have 'gone under'. As one of the 'large minority' I wholly

support your view. Increasing thyroxine is not the only answer. If it

were I would surely be feeling on top of the world by now instead of

tired, exhausted by minimal exercise, forgetful, muddle headed and a

miriad other 'inconvenient' if not debilitating signs and symptoms -

all of which are what took me to the GP in the first place 18 months

ago. So good luck to Chuck and his relatives they are indeed fortunate

but as the saying goes ' one man's meat is another man's poison and in

my view one size doesn't appear to fit all in the management of

hypothyroidism.

Kind regards

> >

> > I have been on levothyroxine since 1997 and am not feeling well on

> > it. At the moment I am on 125 mcg....

>

> Why don't you simply try asking for a larger dose of the T4 first,

since

> that is what your doctor originally prescribed? All four of my hypoT

> female relatives took 200 mcg per day at one time. My Mom is now

down to

> 125 mcg., but she is in her 80s.

>

> Chuck

>

>

>

>

>

>

>

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>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.169 / Virus Database: 270.6.21/1669 - Release Date:

12/09/2008 14:18

>

[Guest guest]

P,

You wrote:

>

> Don't know if it always relates to excess T4. ... Still trying to work out why

> free T3 levels would increase AND Reverse T3 levels would continue

> to increase....

T4 ONLY has one of two fates: RT3 or T3. There are several things that

control the portion of each, including the time of day. So, if both of

those are going up, you must be using T4 up more quickly. Or, one of

your lab tests could be wrong.

Chuck

[Guest guest]

Pat,

My craving for sugar disappeared some months ago - yippee! I now

find that biscuits and cakes have little taste to me and I am quite

happy to just pass them by. A little difficult when yu're out

socially and someone has been cooking for hours making fresh cakes

and muffins and things - but I too am strong willed and I just have

to say no thanks. I did take a peanut butter cookie the other day

when out and have to say it tasted YEEEuch.... I love crunchy peanut

butter on celery sticks. Now there's a real American treat for you

but I have to say its really not bad and the peanut butter is good

protein. My Dr bless her passed that snack idea on to me.

reminds me I should get a couple of before and after pics together

and send to the forum.

.........

>

> ,

> It is good to hear that you are doing really well. Thanks for

> sharing. Gives me even more of a reason to stick to it. I'm quite

> determined when I want to be, so I've made it a lifestyle change.

I'm

> noticing positive changes already & my horrific cravings for sugar

> have lessened (not gone away yet, but they have decreased thank

> goodness).

> P

[Guest guest]

Alice,

You wrote:

>

> Thank you for your original reply to my posting. I am unsure whether

> an increase in my Thyroxine is the answer to my problems at the

> moment....

All of the things Sheila suggested you consider make sense to me, after

you have tried a full treatment dose. Until your TSH is down around 2,

you really haven't given it a try. OTOH, if you your doctor decides NOT

to increase your dose with your TSH this high, then I would definitely bail.

Chuck

[Guest guest]

Hi, Sheila, love to see your sumed up description.

For 4) low Vitamin D, Why is that? The same reason for low B12/Ferritin?

Could it be associated with possible parathyroid problems with Calcium

levels?---Because I read arctiles that said hyperparathyroidism patients

would always be defficient on vitamin D, which is hard to improve!

Fragrance

>

> ...which is why Alice and everybody who is not doing well on thyroid

replacement need to look to

>

> 1) low adrenal reserve (this is very common - but still not recognised

by mainstream endocrinologists) The production of T4, its conversion to

T3 and the binding requires a normal amount of adrenal hormones, notably

cortisone)

>

> 2) Systemic candidiasis, a yeast which causes skin infections almost

anywhere in the body and which invades the lining of the lower part of

the small and large intestine. Here the candida sets up residence in the

warmth and the dark and demands to be fed - loving starches and sugars.

Candida can make you suffer terrible sweet cravings. Candida produces

toxins which cause many symptoms of exhaustion, headache, general

illness, which interfere with the uptake of thyroid and adrenal

therapies. Sometimes the test results can be very high, and make

successful treatment with thyroid hormone difficult to achieve until

adequately treated.

>

> 3) low ferritin

>

> 4) low vitamin D

>

> 5) too low a dose of L-thyroxine, or only partial response to

L-thyroxine, or food allergies such as gluten, the protein fraction of

wheat, cross reacts with the thyroperoxidase enzyme (which makes

thyroxine) and shuts down. So allergy to bread can make you hypothyroid.

Certainly allergic response to certain foods can affect adrenal function

and imperil thyroid production and uptake.

>

> Again, it should never be assumed that L- thyroxine monotherapy works

for everybody. it simply does not. If it doesn't, the above should be

looked into as a possible cause.

>

> Luv - Sheila

>

>

>

> However, I did not see any evidence

> that Alice was having conversion problems, but her TSH suggested she

was

> still just under treated.

>

> Chuck

>

> >

> >

> >

> > Hi chuck,

> > If you can't convert T4 to T3 then the unconverted T4

> > causes joint pain which can become very hard to live with and any

dose

> > increase will make it even worse....

>

>

>

>

>

>

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------

>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.169 / Virus Database: 270.6.21/1671 - Release Date:

14/09/2008 07:16

>

[Guest guest]

Hi Alice,

I haven't read all the posts from you yet, but wondered if your vit

B12 and folate status are known from lab tests?

From my own experience, these last couple of years, I got a low

result for serum folate and questioned whether extra folic acid might

help.

There seems to be an 'unholy alliance' between several of these

hormone, vitamin and trace element deficiency conditions.

My doctor was obliging and prescribed extra folic acid so that I was

able to improve my serum folate status, going from the bottom of the

range to the top of the range.

After a few weeks things began to improve, with very subtle changes

in mental performance. After about three months of consistent

supplementation on 5mg folic acid, instead of only 400micrograms per

day, my short-term memory slowly began to improve and like-wise, my

complex language skills returned.

On reading some of my previous writing/posts, I couldn't credit that

I had written them. So, the brain functions that were affected also

extended to the writing areas, most likely.

If this observation is valid, others may also find that aspects of

pernicious anemia don't just affect the broader nervous system, but

may have insidious and imperceptible effects on the mental functions

well before obvious nervous system changes elsewhere.

Dementia may be all about folate and vit B12 deficits well before

other changes in the nervous system.

Since I'm 64y and my mother had pernicious anemia, I'm making the

tentative assumption that this is a possible familial autoimmune

problem.

Further back in time, I can see that this may have affected me over

a considerable period. My intellectual functioning has

been 'variable' over time.

An explanation following these lines would be helpful to many others

also suffering autoimmune problems eg Hashimoto's disease.

Perhaps, one should presume that one autoimmune problem is suggestive

of others....and go look for them.

Of much greater importance is the possibility that half the

population has the unfortunate disadvantge of having the 'wrong' type

of MTHFR enzyme that causes disadvantage in processing the folates.

MTHFR = Methylene Tetra Hydro Folate Reductase.

If any of (what's known as) the methylating cycle is disrupted,

expect problems.

Those with depression, that's difficult to treat may have the 'wrong'

type of MTHFR gene/enzyme and in these people, extra folate might be

essential to have any chance of improving their lives.

The further inference is that half the population may have an easily

treatable impediment to full intellectual function that varies in a

time and diet dependent manner.

If this is so, one should wonder at the damage done by nutritional

deficits. A top priority to remedying this appalling risk, should

cost virtually nothing in materials. A huge effort in mobilising the

intellectual resources of the education establishment, might be a

little more expensive.

An argument for adding folate to thyroid treatment regimes is

unavoidable.

best wishes

Bob

>

> Hi Chuck,

> Thank you for your original reply to my posting. I am unsure

whether an increase in my Thyroxine is the answer to my problems at

the moment.