Re: blood test and stopping thyroid

[Guest guest]

Chuck

There's science, and then there is the state of being hypothyroid. A scientist will see the science first. A sufferer just wants to get well again and leave the science to the scientist. It is the scientists, sadly, in the UK who are actually stopping patients getting a diagnosis telling us that ONLY TFT's are required to reach a precise diagnosis of hypothyroidism, and that synthetic T4 is the gold standard treatment and everyone should do well on that because anybody not being able to convert is a rare thing. it is the scientists in the UK who are making hypothyroid patients ill.

Have you ever had need to take a product containing T3 - T3 often spikes 2 hours after taking a dose and quite often, after approx 6 to 8 hours, the original benefit experienced can be minimal. This is why the majority of sufferers find the benefit taking another dose around 8 hours later (and NO, I am not talking about the half life- but the time taken for the benefit to be lost).

This is a UK forum, a forum built around the specific problems that UK citizens face in getting a correct diagnosis and correct treatment for their condition. You have your problems in the USA and that is why we specifically called our forum TPA-UK - not TPA-International. However, having said that, everybody from the world over is very welcome. We do not use time-released forms of Cytomel here in the UK - we do not have a choice of synthetic T3 the only T3 we can get is Lyothyronine or, for the very lucky ones, Armour. We have to fight tooth and nail in the UK to get ANY form of T3 and unfortunately, the majority of those who are taking it have to buy it from the USA. I need T3 and the benefits to me would completely out weigh any extra expense to be able to carry on taking it in two split doses - but I do get mine from the NHS, so this doesn't affect me.

Others who are extremely sensitive to T3 need to take tiny doses throughout the day - I know of one of our previous members who scraped a tiny bit of powder off her T3 tablet with a razor blade and put that in her mouth - another member who couldn't take any form of synthetic T4 or T3 got her butcher to source raw thyroid glands for her (some of you who attended our first 'Yorkshire TPA Get Together' will no doubt remember this).

Although we appreciate that science is behind everything, on patient forums like this where all we want is to get help to regain our health - it takes low priority - simply because there is nothing we can do about it. It is the scientists in the UK (aka BTA) that has put us all here in the first place. If the scientists listened to their patients a bit more, we wouldn't be in the predicament we are in. So please understand where we are coming from and understand us as patients and we will try to understand your scientific reasoning - and hopefully, we will all learn.

As Oprah Winfrey said, Biology is the least of what makes someone a mother"

Sheila

So, when people ask about splitting, it might be worth a try, at least initially, but the extra complication that creates may not be worth the alleged smoothing. That benefit also may not justify the extra expense of going to a compounding pharmacy for timed release forms of Cytomel.Chuck

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[Guest guest]

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EVERYTHING APART FROM A SMALL PORTION YOU ARE RESPONDING TO. LUV - SHEILA

_____________________________________

Hi Sheila

I am sorry to butt in here but Chuck is a patient himself, so are

his family. In addition he is a scientist. Both of which in my mind

and experience give him a far broader understanding of the condition

than anyone else I've ever come across. I for one welcome his

contribution in the hope of understanding myself.

Chris

>

> Chuck

>

> There's science, and then there is the state of being hypothyroid.

A scientist will see the science first.

[Guest guest]

Hi - don't be sorry to butt in. However, I am not sure what the point is that you are trying to make.

Chuck and his family are patients - my family and myself are patients. Chuck has an understanding of the science behind this disease and I hope he will continue to share this with us. However, I am not only interested in what contributions are made, but how they are made - whether scientific or lay. All of us, whatever our background, should work together to help each other in whatever way we can, especially in the actual understanding of the science behind the problems of hypothyroidism when this is needed (but in our particular forum, not always). Science lies behind the many problems of the tens of thousands of sufferers (probably millions world wide) not getting a diagnosis and treatment, or their treatment not working. Science, in our particular case is the cause of the problems in the UK hypothyroid world, and comes direct from those scientists who are members of the Executive Committee of the BTA, who have drawn up the UK TFT guidelines and lay down the rules as to how a diagnosis should be reached and what treatment they recommend. They stick with their science, refusing to look outside their box.

Sheila

I am sorry to butt in here but Chuck is a patient himself, so are his family. In addition he is a scientist. Both of which in my mind and experience give him a far broader understanding of the condition than anyone else I've ever come across. I for one welcome his contribution in the hope of understanding myself.Chris>> Chuck> > There's science, and then there is the state of being hypothyroid. A scientist will see the science first.

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[Guest guest]

Hi chuck, I fell ill 5 days after not taking my natural thyroid(armour) not sure about the T3as I don`t have conversion problems.! but 12- hours may be right. angel.

[Guest guest]

My one concern for you is that TSH below 0.1 for more than three months

has been found to be associated with changes in heart muscle and bone

density. The bone is easier to detect. However, your low TSH may be due

to something other than too much T4, perhaps a pituitary insufficiency.

Just in case, your doctor should probably monitor your bone mass

periodically.

Chuck

>

>

> Hi Chuck

>

> What you say makes so much sense to me.

>

> I was explaining to a GP a couple of months ago that I can feel the

> differences in thyroxines i.e. for me Eltroxin is like taking 175

> levothyroxine. I only ever tried Eltroxin for 3 weeks and during

> that time I met a work colleague and his wife in a supermarket one

> day and apparently they thought I had been drinking, obviously I

> looked like I had. I do not drink, only ever have the occasional

> glass of wine with a meal out and this was 11 am in the morning.

>

> In an attempt to reduce my dose a while back I was asked to try 175

> and 200 alternately. I did not know whether I was coming or going

> and within a week of doing this I went to the GP and had it recorded

> as to how it felt and went back to the 200. I explained then 200

> seems to be the minimum dose I can take without any ill effects and

> that timing also seems to be of the essence.

>

> Because of TSH and FT4 blood tests (first time ever tested TSH <0.1

> and FT4 32.6) my 200 got reduced to 150 in November 2003 after over

> 33 years on 200. I went incredibly hypo with an FT4 of 24 and

> dreadful symptoms even though my TSH was still <0.1. Having put

> myself back on 200 in April 2007 once I realised it was the lack of

> thyroxine I was suffering, it has taken about 18 months to get

> myself completely back to normal (normal as I know it).

>

> I have a copy of my GP notes and I can now pinpoint on the notes

> over the years when I forgot to take it by the reasons for my visits.

>

[Guest guest]

My Chuck

Thank you for your reply.

My TSH will have been <0.1 for at least 38 years since I have been

on thyroid hormones if not before. I was asked to have a bone

density scan when I was referred to an endocrinologist after I had

reverted to 200, I had osteopenia. This was concluded to be due to

the reduced dose as calcium levels on 200 before were fine but low

after the 150 episode. I am now supposed to take calcium and vit D

tabs twice a day but they are so vile I dont. But I dont think I

need them now. I was getting bad cramps in fingers and toes which

over the last few months have ceased. I am due another scan in 2

years time.

I did ask if maybe I had a pituitary problem but because he had only

ever seen one other case, dismissed it, although I had my prolactin

checked on 200 and it came back at 232 in the middle of the range.

I also asked whether I would have a menopause but he didnt answer, I

dont think he knew. My FSH and LH are normal but I lost my periods.

Prior to 2003 all previous blood tests were T3 uptake and FT4 index,

T3 uptake being right at the top of the range and FT4I way over the

top but there was never any mention of reducing the dose.

I also need 200 to keep my blood pressure and pulse up and to feel

hungry and want to eat.

Strange arnt I.

Chris

>

>

>

> My one concern for you is that TSH below 0.1 for more than three

months

> has been found to be associated with changes in heart muscle and

bone

> density. The bone is easier to detect. However, your low TSH may

be due

> to something other than too much T4, perhaps a pituitary

insufficiency.

>

> Just in case, your doctor should probably monitor your bone mass

> periodically.

>

> Chuck

[Guest guest]

Sheila, the problem appears to be how to get the scientists to listen to

you. So you need to be aware of what constitutes evidence to a

scientist. In most cases I think it's credible peer reviewed research.

Scientists have found anecdotal evidence notoriously unreliable, so it

has basically no value.

I believe problems in conversion of T4 to T3 by hypothyroidism patients

are well supported in credible research. However AFAIK, the documented

percentage of patients who cannot convert T4 to T3 appears to be small

[anybody got any numbers here?].

Yet we have a ton of anecdotal evidence that T4 alone is inadequate in

providing relief to many diagnosed with hypothyroidism. And the number

who report positive results from T3 appears to be larger [maybe

multiples?] of the number that can be shown scientifically to have T4/T3

conversion problems. Fortunately T3 is available in the US; the problem

often is finding a doctor who will prescribe it.

Further, medical science tends to equate hypothyroidism to elevated TSH

[at least in some/ many cases] and nothing else. But we have a ton of

anecdotal evidence that many [especially on the Hypothyroidism

list] do not feel well and symptom free until TSH is suppressed to the

very bottom of the range; or at times approaching zero.

There has been speculation on the hypothyroidism list that one of the

possible causes for patients to not respond as well as expected to

typical allopathic [T4 alone] care may be related to the length of time

that a patient was either untreated or undertreated for hypothyroidism.

The idea seems to me to be that unspecified damage may have occurred to

organs that contributes to the fact that standard methods of treatment

following this situation are inadequate.

Unfortunately I don't have an answer to these problems. What I've tried

to do here is to list what I think the problems are. If we want

scientists to accept what we feel is true then it almost HAS to be

supported by credible research. Maybe someone can provide additions or

corrections???

> There's science, and then there is the state of being hypothyroid. A

> scientist will see the science first. A sufferer just wants to get

> well again and leave the science to the scientist. It is the

> scientists, sadly, in the UK who are actually stopping patients

> getting a diagnosis telling us that ONLY TFT's are required to reach a

> precise diagnosis of hypothyroidism, and that synthetic T4 is the gold

> standard treatment and everyone should do well on that because anybody

> not being able to convert is a rare thing. it is the scientists in the

> UK who are making hypothyroid patients ill.

[Guest guest]

One of the limitations of science is that once a paradigm is firmly

established it almost takes extracting toenails without anesthesia to

change the mindset. Or very compelling CREDIBLE evidence indeed. I'm

sure you're aware that sometimes scientists [humans, after all] do not

always adhere to the best principles of science.

Regards,

..

..

> Science lies behind the many problems of the tens of thousands of

> sufferers

[Guest guest]

Hi

Did we mention (are you aware of) the Hypothyroid Thyroid Patient

Survey (1500 contributors) from amongst the hypothyroid community

(not just TPA-UK) who didn't do too well on the 'standard

treatment'....about 78% didn't recover their optimum health after an

allopathic treatment regime. A considerable number suffered economic

( and social ) losses.

Lost productive years can be documented.

Sheila's (and the TPA-UK Forum's) effort on that one have been

excellent.....it isn't formally published in a peer reviewed journal;

it was, however, praised for it's completion.

The community's effort is being recognised, if slowly.

best wishes

Bob

Sheila, the problem appears to be how to get the scientists to listen

to you.

[Guest guest]

The uptake and index are really older tests for determining whether you

have a globulin or albumin binding problem. You don't, so they should

have stopped testing for that. The better way now to investigate binding

is to just measure FT3 and FT4. Those are now precise enough that they

beat the resin tests by far. The resin is cheaper, though.

The osteopenia is not a good sign, even if it took 38 years to develop,

as that could be connected to the low TSH. The danger is that the heart

muscle could be damaged at the same time. Could you tolerate a very

slightly lower dose? I believe 188 mcg is one of the tablet sizes. Or,

perhaps you could alternate with the 200 mcg.

A pituitary anomaly is certainly still a possibility, but I would keep

careful watch on the bone density. Most people on T4 without symptoms

have a higher TSH than this. Bumping the bottom rung is more common with

T3 type meds, because they spike the blood levels. As I mentioned, it is

not at all clear that there is harm with low TSH from T3 meds. T4 is

different.

Please be careful.

Chuck

>

> My TSH will have been <0.1 for at least 38 years since I have been

> on thyroid hormones if not before. I was asked to have a bone

> density scan when I was referred to an endocrinologist after I had

> reverted to 200, I had osteopenia. This was concluded to be due to

> the reduced dose as calcium levels on 200 before were fine but low

> after the 150 episode. I am now supposed to take calcium and vit D

> tabs twice a day but they are so vile I dont. But I dont think I

> need them now. I was getting bad cramps in fingers and toes which

> over the last few months have ceased. I am due another scan in 2

> years time.

>

> I did ask if maybe I had a pituitary problem but because he had only

> ever seen one other case, dismissed it, although I had my prolactin

> checked on 200 and it came back at 232 in the middle of the range.

>

> I also asked whether I would have a menopause but he didnt answer, I

> dont think he knew. My FSH and LH are normal but I lost my periods.

>

> Prior to 2003 all previous blood tests were T3 uptake and FT4 index,

> T3 uptake being right at the top of the range and FT4I way over the

> top but there was never any mention of reducing the dose.

>

> I also need 200 to keep my blood pressure and pulse up and to feel

> hungry and want to eat.

>

> Strange arnt I.

[Guest guest]

Hi Chuck

The osteopenia developed in the 3 years of the dose drop from 200 to

150. The endocrinologist knew this from blood tests, and he was

expecting osteoporosis which is why he requested the bone scan.

Unfortunately we only have thyroxine in increments of 25mcg and I

tried 175 and 200 alternately as I was asked to do, but my head

starts filling starting with my ears and my head feels too heavy for

my neck to the degree that when I turn it it crunches, so you can

imagine what it was like on 150, I was sleeping for England.

Any idea what my head fills with, I can feel it sloshing? When I

went back to 200 from 150 I had the most horrendous headaches

imaginable but I persevered because my head was clearing and once it

cleared I was able to stand up straight again and hold my head up

properly and stay awake all day.

All this has been relayed to GP and endocrinologist but no answers.

I have heared that if one thinks it is difficult to get a diagnosis

for hypothyroidism, try hypopit, its even worse.

Chris

>

>

>

> Could you tolerate a very

> slightly lower dose? I believe 188 mcg is one of the tablet sizes.

Or,

> perhaps you could alternate with the 200 mcg.

>

> A pituitary anomaly is certainly still a possibility, but I would

keep

> careful watch on the bone density. Most people on T4 without

symptoms

>

MODERATED TO REMOVE MESSAGES PREVIOUSLY READ

[Guest guest]

HI Chuck,

I feel the reason my doc said I could increase to 175mcg was because he didnt know what else to do as I still presented with slight symptoms, he said try it and see.

I then stopped all T4 after that anyway to begin adrenal support with HC so some of my symptoms were probably adrenal related and not thyroid but difficult to tell and with fully functioning adrenals I wouldnt have felt the need for an increase in T4 I dont think.

Our thyroxine tablets come in different strenghts to your synthoid I have noticed. We just get 25mcg, 50mcg, 100mcg, you seem to get a much wider and probably more useful doses. I have an aunt in the US and she takes 137mcg of T4 and I could never understand how she got to take that amount and if she had to split pills someone to make up that amount, sorry ignore that last bit cos I think we have a 12.5mcg pill, not sure but I think Im right

> > I really dont know how you know that I had not reached my optimim > replacement level Chuck, you cannot possibly know that, have you seen my > last lot of blood tests or something? My last TSH result was 0.66 and my > T4 18.1 with 22 being the cut off point, I dont rely to much on results > these days, its how someone feels and I can tell you know that 150mcg of > T4 did not make me feel well, HC does! Yet again we all are different > and just because 200mcg is a full replacement dose for one person does > not mean it will be for everyone and when I took 175mcg for a week I had > symtoms of going hyper

------------------------------------

TPA is not medically qualified. Consult with a qualified medical practitioner

before changing medication.

[Guest guest]

That all really sounds like pituitary. I certainly hope it doesn't

progress.

Chuck

> The osteopenia developed in the 3 years of the dose drop from 200 to

> 150. The endocrinologist knew this from blood tests, and he was

> expecting osteoporosis which is why he requested the bone scan.

>

> Unfortunately we only have thyroxine in increments of 25mcg and I

> tried 175 and 200 alternately as I was asked to do, but my head

> starts filling starting with my ears and my head feels too heavy for

> my neck to the degree that when I turn it it crunches, so you can

> imagine what it was like on 150, I was sleeping for England.

>

> Any idea what my head fills with, I can feel it sloshing? When I

> went back to 200 from 150 I had the most horrendous headaches

> imaginable but I persevered because my head was clearing and once it

> cleared I was able to stand up straight again and hold my head up

> properly and stay awake all day.

>

> All this has been relayed to GP and endocrinologist but no answers.

>

> I have heared that if one thinks it is difficult to get a diagnosis

> for hypothyroidism, try hypopit, its even worse.

>

> Chris

>

> >

> >

> >

> > Could you tolerate a very

> > slightly lower dose? I believe 188 mcg is one of the tablet sizes.

> Or,

> > perhaps you could alternate with the 200 mcg.

> >

> > A pituitary anomaly is certainly still a possibility, but I would

> keep

> > careful watch on the bone density. Most people on T4 without

> symptoms

> >

> MODERATED TO REMOVE MESSAGES PREVIOUSLY READ

>

>

>

>

> ------------------------------------------------------------------------

>

>

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

> Version: 8.0.169 / Virus Database: 270.6.14/1644 - Release Date: 8/31/2008

4:59 PM

>

[Guest guest]

,

You wrote:

> Our thyroxine tablets come in different strenghts to your synthoid I

> have noticed. We just get 25mcg, 50mcg, 100mcg, ...

Yes, Synthroid and its generics include the 12.5 mcg steps in between these.

Chuck

[Guest guest]

Hi, Bob. Please see responses below...

..

..

>

> Posted by: " bob.m9uk " Bob.m9uk@...

>

<mailto:Bob.m9uk@...?Subject=%20Re%3A%20blood%20test%20and%20stopping%20\

thyroid>

> bob.m9uk <bob.m9uk>

>

>

> Sun Aug 31, 2008 12:16 pm (PDT)

>

> Hi

>

> Did we mention (are you aware of) the Hypothyroid Thyroid Patient

> Survey (1500 contributors) from amongst the hypothyroid community

> (not just TPA-UK) who didn't do too well on the 'standard

> treatment'..

..

..

No; I hadn't heard of it; I'm new here.

..

..

> ..about 78% didn't recover their optimum health after an

> allopathic treatment regime. A considerable number suffered economic

> ( and social ) losses.

..

..

That's _extremely_ high!! How was the sample population selected? I

bet we would get about the same results [or same order] on the

Hypothyroidism list. However, I strongly suspect that that list self

selects for atypical cases. Some of the cases there just make you want

to cry...

..

..

>

> Lost productive years can be documented.

>

> Sheila's (and the TPA-UK Forum's) effort on that one have been

> excellent.....it isn't formally published in a peer reviewed journal;

> it was, however, praised for it's completion.

>

> The community's effort is being recognised, if slowly.

..

..

That's great. Now, if only we could get Sheila to put in a few more

hours per day [say, about 40 {ggg}]...

Seriously, though [i believe you're a research scientist?], how

difficult would it be to replicate these findings in a credible study?

I hope I'm not exhibiting too much ignorance here; although on the

subject I have to admit it.

Regards,

..

..

>

> best wishes

> Bob

>

>

> Sheila, the problem appears to be how to get the scientists to listen

> to you.

[Guest guest]

Thanks Chuck, you've confirmed what I have been thinking for a long

time now.

But what do I do? I am fine on 200. The endocrinologist said I

should take whatever I am comfortable on because it makes no

difference to the TSH.

Would larger doses of thyroxine have been given to correct other

pituitary deficiences back in 1970, or is it just likely central

hypothyroidism? I have a GP appointment this evening, should I be

asking for a 2nd endocrinolgist opinion?

Chris

>

>

>

> That all really sounds like pituitary. I certainly hope it doesn't

> progress.

>

> Chuck

[Guest guest]

and Bob,

There was a published survey here recently that showed that 13% of hypoT

patients were dissatisfied with their treatment. I suspect the reason

for the difference is that these were not self selected. Somehow they

cornered them at the pharmacies or doctors' offices and didn't just

invite people to volunteer.

Still, that was an eye opener for the medical community.

Chuck

[Guest guest]

You wrote:

>

>

> Thanks Chuck, you've confirmed what I have been thinking for a long

> time now.

>

> But what do I do? I am fine on 200. The endocrinologist said I

> should take whatever I am comfortable on because it makes no

> difference to the TSH....

I quite agree. Just check the bone density occasionally to be sure. I

would only reduce the dose slightly to raise the TSH, if you still feel

well at the lower dose. If anything changes, ask them to scan the

pituitary, especially if the headaches resume.

A second opinion probably will not hurt, but I have no reason to think

you have anything but a winner, already.

Chuck

[Guest guest]

Hi, found some info on T3 - 4 hours to clear the body. angel.

[Guest guest]

Hi Chuck

If you go to our website www.tpa-uk.org.uk and look in the right hand column under TPA-UK News - you can see all the results of that survey - it is rather hefty, but makes quite interesting reading. The results right now are with Dr Colin Dayan, Head of Research at Bristol University

Sheila

__________________________

and Bob,There was a published survey here recently that showed that 13% of hypoT patients were dissatisfied with their treatment. I suspect the reason for the difference is that these were not self selected. Somehow they cornered them at the pharmacies or doctors' offices and didn't just invite people to volunteer.Still, that was an eye opener for the medical community.Chuck

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[Guest guest]

Sheila,

You wrote:

>

> If you go to our website www.tpa-uk.org.uk <http://www.tpa-uk.org.uk>

> and look in the right hand column under TPA-UK News - you can see all

> the results of that survey - it is rather hefty, but makes quite

> interesting reading. The results right now are with Dr Colin Dayan, Head

> of Research at Bristol University

Right, that's the one and Bob were discussing. The survey I

mentioned had a much smaller sample set, but the responses were

solicited differently, perhaps accounting for the smaller percentage of

dissatisfied, still a large response for most medical conditions.

Chuck

>

> __________________________

>

> and Bob,

>

> There was a published survey here recently that showed that 13% of

> hypoT

> patients were dissatisfied with their treatment. I suspect the reason

> for the difference is that these were not self selected. Somehow they

> cornered them at the pharmacies or doctors' offices and didn't just

> invite people to volunteer.

>

> Still, that was an eye opener for the medical community.

>