Re: Confused after NHS appointment yesterday

[Guest guest]

There is no evidence that a run of the mill endo will accept as credible, they

are told by the BTA what they can think,test and what results they can share.

They are a waste of space.

This site is by sufferers for sufferers, we all live with this illness 24 /7, we

know a darn sight more about that than any GP or endo!! See another endo, one

that specialises in thyroid not diabetes, research an endo that cares for

his/her patients first instead of treating the numbers. In the files section

you wikll find a huge number of references which show that the way that the BTA

etc treat hypothyroid is very wrong, but getting them to acknowledge it is

another matter entirely!!

You are not alone, most people have already gone through the 'oh it MUST be

something else, its not your thyroid' phase and have either found someone who

knows what they are talking about or self - treat.

Trust to yourself, if you don't feel well reducing your meds - then don't. Tell

the endo you're willing to try a reduced dosage for 1 month and if you feel crap

you are raising it again. NEVER follow an endo's demands as all they do is try

to reduce your meds till you are ill again - then of course 'oh it MUST be

something else, its not your thyroid'.......

Glynis

[Guest guest]

Thanks for your reply Glynis, it's just so frustrating nearly 19 years after

first having thyroid problems that I feel I'm back to square one.

>

> There is no evidence that a run of the mill endo will accept as credible, they

are told by the BTA what they can think,test and what results they can share.

They are a waste of space.

[Guest guest]

I know, I have been battling for 10 years and still get the same from endos and

GPs.

I asked my endo why I needed TSH as I have no thyroid - he threatened to

discharge me!! I asked my GP, she chose not to answer, I asked another GP,

" good question, he said, I can't answer that!! "

Nor will they, I have asked questions for 10 years and endos refuse to answer,

change the subject or chuck you out of the consultation rather than give you any

solid information.

You end up battling for yourself in the end, if you leave it to doctors you will

be very ill and they won't care, they still get paid ooodles of money. You have

to learn to be assertive but not argumentative, its a hard line to walk but you

have to, its your health, your body, your life.

Glynis

> Thanks for your reply Glynis, it's just so frustrating nearly 19 years after

first having thyroid problems that I feel I'm back to square one.

>

[Guest guest]

hi know how you feel, confused, angry frustrated and bitter. and my tests say

hyper when i am hypo. luv Connelly

>

> My appointment with an NHS Endo yesterday has left me confused and concerned

that I've got it all wrong.

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*Rest of old message deleted by moderator *

[Guest guest]

,

When I was told that my tests showed hyper (donkeys years ago) I immediately

replied that I didn't have any of the signs of hyper, no shaking hands (tremor),

no heat intollerance, sweats, no weight loss, no eye problems etc etc.... so

they must be interpreting the tests wrongly.

Learn the hyper signs and be able to reel them off straight away

I know this is a bit agressive, but it usually makes them stop and think and at

worst, they just mumble and leave my meds well alone ...

x

>

> hi know how you feel, confused, angry frustrated and bitter. and my tests

say hyper when i am hypo. luv Connelly

>

[Guest guest]

Hi there could you be both hypo and hyper- just a thought, angel.

[Guest guest]

Hi Angel, is there a condition recognized, by endos, that is both hyper and hypo

at the same time and what causes this scenario?

Thank you.

>

> Hi there could you be both hypo and hyper- just a thought, angel.

>

[Guest guest]

You can have both Hashimotos and Graves Disease at the same time.

> >

> > Hi there could you be both hypo and hyper- just a thought, angel.

> >

>

[Guest guest]

Yes, it's called Hashimoto's Thyroiditis. This is why we ask

members to get their GP's to check to see whether they have antibodies to their

thyroid (TPO - TgAb). See http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm

Luv - Sheila

Hi Angel, is there a condition recognized, by endos, that is both hyper and

hypo at the same time and what causes this scenario?

Thank you.

[Guest guest]

Thanks for that Sheila; the problem I have with the Endo I saw was that he

doesn't believe anti body levels are significant after confirming Hashimotos and

says they do not ever need to be measured again. I know that my TPO level was

420 and the range 60 (so very high) when last tested but this is of no

significance to my Endo but I'm sure I read that Dr Lowe said that

monitoring antibody levels was a very important indicator of what was happening

to the thyroid!

Is having Hashimotos and Graves at the same time the same as Hashimotos

thyroditis? Sorry if that's a stupid question...

>

> Yes, it's called Hashimoto's Thyroiditis. This is why we ask members to get

> their GP's to check to see whether they have antibodies to their thyroid

> (TPO - TgAb). See

> http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm

>

> Luv - Sheila

[Guest guest]

HI,

Graves and Hashimotos are two separate diseases. I don't think it's that

common to have them both together and you'd be pretty unfortunate.

Of course it's possible for your thyroid to speed up (put out more thyroid

hormones) when it is being attacked by antibodies. At this point the

antibodies would rise. Once you know you have hashimotos you can't do much

about the number of antibodies, so I can see why the endo wouldn't want to

measure them again. At 400 + you can confirm Hashimotos, but mine were

1767, which also confirms Hashimotos, it doesn't mean I have it any worse than

you do. I just have it.

.

>

> Thanks for that Sheila; the problem I have with the Endo I saw was that he

doesn't believe anti body levels are significant after confirming Hashimotos and

says they do not ever need to be measured again. I know that my TPO level was

420

[Guest guest]

Thanks for your reply and for clarifying the Hashi/Graves question.

I guess I didn't phrase my question about antibodies very well. What I was

trying to understand is if the antibody levels fluctuate significantly will that

affect the level of meds you need ie requiring doses to be altered up or down?

Also say your levels were 1767 at one blood test and you had the levels measured

again and they were say 500, would your symptoms alleviate when on the reduced

'attack' or does it not impact symptoms? From what I interpret from you and my

Endo is that once HT is confirmed no further antibody tests are required, is

that the general consensus? I'm trying to educate myself again so I'm grateful

for any help.

It seems the more questions I ask the more confused and uncertain I am in what I

thought!

>

> Of course it's possible for your thyroid to speed up (put out more thyroid

hormones) when it is being attacked by antibodies. At this point the

antibodies would rise. Once you know you have hashimotos you can't do much

about the number of antibodies, so I can see why the endo wouldn't want to

measure them again. At 400 + you can confirm Hashimotos, but mine were

1767, which also confirms Hashimotos, it doesn't mean I have it any worse than

you do. I just have it.

>

> .

>

[Guest guest]

He's absolutely correct - antibody levels are not significant

once you know you have Hashimoto's disease. Once you have them, you have them

until they have done the job they are supposed to do, i.e. destroy the thyroid

gland completely. Once they have done that, they quietly go away and you get on

with the business of replacing your thyroid hormone with whatever thyroid

hormone replacement you have found works best for you. Your antibody count will

change from being very high at times to being very low, but as you can't do a

thing about it (apart from taking Selenium daily and iodine if necessary) don't

worry about it.

Yes, you can have Hashimoto's and Graves' at the same time,

though this is not usual. What's usual is that when the antibodies are active

you will have more symptoms than you will have when the antibodies are not

active.

Luv - Sheila

Thanks for that Sheila; the problem I have with

the Endo I saw was that he doesn't believe anti body levels are significant

after confirming Hashimotos and says they do not ever need to be measured

again. I know that my TPO level was 420 and the range 60 (so very high) when

last tested but this is of no significance to my Endo but I'm sure I read that

Dr Lowe said that monitoring antibody levels was a very important

indicator of what was happening to the thyroid!

Is having Hashimotos and Graves at the same time the same as Hashimotos

thyroditis? Sorry if that's a stupid question...

_

[Guest guest]

Thank you, I've learned something today!

>

> He's absolutely correct - antibody levels are not significant once you know

> you have Hashimoto's disease. Once you have them, you have them until they

[Guest guest]

> >

> > Hi there could you be both hypo and hyper- just a thought, angel.

> >

I have heard about it ,but not had any experience,. the auto-antibodies

attack the thyroid different ways, one is the hash`s way and the other is the

graves way!! so a patient can have two types of auto-antibodies

active one attacks then dies down then the other attacks, so I am led

to believe. Angel.

[Guest guest]

Should the number

of antibodies attacking your thyroid gland at any one time cause a fluctuation

in your symptoms and blood test results, then it is your symptoms or blood test

results that will show whether your treatment needs to be titrated or not - it

doesn't matter what the cause or the number of antibodies. Your symptoms and

blood results would be affected by the number of antibodies attacking your

thyroid - hence your fluctuating health. Your endocrinologist is correct in

that once Hashimoto's has been confirmed, there is no need to do further

testing of thyroid antibodies.

Hope this helps.

Luv - Sheila

I was trying to understand is if the antibody levels fluctuate significantly

will that affect the level of meds you need ie requiring doses to be altered up

or down? Also say your levels were 1767 at one blood test and you had the

levels measured again and they were say 500, would your symptoms alleviate when

on the reduced 'attack' or does it not impact symptoms? From what I interpret

from you and my Endo is that once HT is confirmed no further antibody tests are

required, is that the general consensus? I'm trying to educate myself again so

I'm grateful for any help.

It seems the more questions I ask the more confused and uncertain I am in what

I thought!

_,___

[Guest guest]

A question here, in the case of Hashimoto's would one better off when ones

thyroid has been destroyed, and would one be more stable with medication.

Kathleen

>

> He's absolutely correct - antibody levels are not significant once you know

> you have Hashimoto's disease. Once you have them, you have them until they

> have done the job they are supposed to do, i.e. destroy the thyroid gland

> completely. Once they have done that, they quietly go away and you get on

> with the business of replacing your thyroid hormone with whatever thyroid

> hormone replacement you have found works best for you. >

> Luv - Sheila

>

[Guest guest]

Hi Miss Clawdy J

It seems the more questions I ask the more confused and uncertain I am in what Ithought!

Don't worry, it is very hard at the beginning. The endocrine system is terribly complicated. You will get the hang of it, if you stick with it and read, read, read..... start with Dr. Peatfield's book – "your thyroid and how to keep it healthy". Once you have read, digested and understood what he is saying, you will already know more than your doctor....

What I wastrying to understand is if the antibody levels fluctuate significantly will thataffect the level of meds you need ie requiring doses to be altered up or down?In a word – no .... at least not in the sense of your question. You may need to adjust your thyroid dosage in due course (irrespective of the number of AAs), and indirectly this may be related to the presence (or lack) of AAs. What I mean is that during the stage of `thyroiditis' the thyroid gland can still operate to a degree for as long as there is still sufficient thyroid tissue to produce thyroid hormones.... in the end stages, when `thyroiditis' (inflammation of the thyroid gland) turns into true Hypothyroidism (although we use that term loosely, strictly speaking that is when your thyroid gland is as dead as a dodo) you may then need to adjust your dosage upwards. But some patients also need to adjust their thyroid hormone intake according to weather – they need more in the winter, less in the summer.... although not everybody does. We are all individuals and there is no `one fits all' rule.

Also say your levels were 1767 at one blood test and you had the levels measuredagain and they were say 500, would your symptoms alleviate when on the reduced'attack' or does it not impact symptoms?

I see what you are driving at.... and it is difficult to answer. It depends on who you ask. A doctor will tell you `no difference' and some patients will tell you `no difference'.... but how do they know? The long and short of it is – there is no way of knowing, unless you keep counting the numbers every day and keep a log at the same time of how you felt on each day and then draw a graph.

However – if you analyse the matter logically, then there `must' be a difference, because a high autoantibody count signals that an attack on the thyroid gland has been launched. Thyroid autoantibodies are thyroid specific, so when the numbers are high, logically it follows that there is an attack going on... but this attack is painless. You may feel the effects of an attack, but not the attack itself. What you might feel (if anything) is the aftermath of an attack – the AAs destroy part of the thyroid gland, and as a result there will be excess thyroid hormones pushed out into the bloodstream – your FT count goes up ... and as a result of that you might actually feel better for a couple of days or so – or, if the FT's are pushed up too high, you might feel worse.... Do you see what I am getting at?

Your question is very interesting, but the answer is of no consequence. If you have positive AAs, you suffer from an autoimmune disease – and autoimmune diseases are treatable and manageable, but they are not curable. Whatever you do, those AAs will destroy your thyroid gland in due course – whatever you do. My own GP humours me by monitoring the AAs once a year. This is for my own interest. The numbers are irrelevant, but I'd like to follow their trend nonetheless.

However, there is something that is said to keep the numbers of AAs down.... – a gluten free diet.

Apparently, gluten molecules are almost identical to thyroid molecules. Thyroid AAs only attack and destroy thyroid tissues... but they seem to misidentify and also attack and destroy gluten molecules... and that can result in `warfare' in your intestines, even if you have tested negative for celiac disease. I am currently testing this theory myself. Obviously, I am not objective, but my feeling is that it does help. My gut (and overall wellbeing) is much better on a gluten-free diet. Keeping the AA numbers down will prolong (but not prevent) the end stage Hypothyroidism, and this is what it is all about with autoimmune disease... the aim is to keep flare-ups at bay and hold the status quo for as long as possible. Remission is all you can hope to achieve – cure is impossible.

I hope this answers your question J

With best wishes,