Re: Arghhhh

[Guest guest]

For starters:

Your endo can suggest all they want to, until it is DISCUSSED and AGREED with

you, the PATIENT they have no right to alter your meds.

You have to be strong and stand up to these people, they don't have the illness

and tend to live in their own little perfect world. If you agree to lower your

meds and you are worse then how long will it be before you get them raised

again?

Think of YOURSELF and don't let your endo tell you how to manage YOUR illness.

Bottom line is they have to get dressed in the morning, same as you, they have

to take their pants off to use the toilet, just like you. The difference is

they get paid astronomical amounts of money to help you get well, MAKE THEM WORK

FOR IT!!!!

Glynis

> Well I'm just very frustrated and need a shoulder to cry on .....

>

> A letter has arrived from my Endo, requesting I drop back down to 50mcg

Levothyroxine and has noted that he still feels there is no clinical relevance

to me being on it at all !

[Guest guest]

Hi Glynis

Thanks for the response and I do agree with what you state.

I've called my GP surgery and have an emergency appointment with him to discuss

the outcome of recent Endo appointment.

I'm going to go with the idea that if my T4 level was alot higher on 75mcgs than

50mcgs, then yes I would agree that a reduction was called for, however as I

noted in my original post, there has been only 1mmol increase in Free T4.

I'm really confused with all these results tho and I do think I should be

seeking a second opinion.

After some research on TRH testing, I see that this is not done routinely in the

NHS due to issues with obtaining the synthesised TRH hormone to perform the

test.

Has anyone experienced such a test within the UK, it seems this is the only way

to check for secondary hypothyroidism ?

Yours .... Neil

[Guest guest]

Hi Neil, The unfortunate thing is that FT3 was not tested- it does not matter how high T4 is if you can't convert to the active hormone T3. Low T3 levels are what causes hypo symptoms. If your doc refuses to test for T3 then you can get it done privately- see the forum files for more info. > thyroid treatment > From: myworlduk@...> Date: Mon, 24 Jan 2011 16:30:56 +0000> Subject: Arghhhh> > Well I'm just very frustrated and need a shoulder to cry on .....> > A letter has arrived from my Endo, requesting I drop back down to 50mcg Levothyroxine and has noted that he still feels there is no clinical relevance to me being on it at all !> > New blood tests show my TSH have dropped to 0.07 with Free T4 being 18, no reference points noted however I suspect the usual of .40 to 3.5 and 9 to 25 respectively.> > Whilst I appreciate the concern from him that I'm almost suppressed and that is a bad thing ? Right/Wrong ? I'm not sure and totally confused.> > Here is the history of blood tests over the last 12 months.> > March (2010) - TSH - .60 - Free T4 - 9 (No Levothyroxine)> June (2010) - TSH - .20 - Free T4 - 17 (50mcgs Levo)> January 2011 - TSH - 0.07 - Free T4 - 18 (75mcgs Levo)> > The clinical basis for the initial 50mcgs are that I show classic signs of Hypo, however TSH shows Hyper, Free T4 however confirms Hypo.> > Latest blood test show only very slight increase in Free T4 and significant reduction in TSH.> > What am I missing here, I thought the TSH would only drop if Free T4 was high, mine is still just at mid point on the reference range.> > Am I right to suspect that I have secondary hypothyroidism due to Hypothalimus/Protuitiary gland issue ?> > My axis does not seem to react/reflex how I understand it should do on a healthy person.> > Have received list of Drs from Sheila (thanks again), I think I'm going to have to get a second opinion.> > All other hormone/blood tests showing normal ranges, no Cushings or s etc and normal Cortisol and Adrenal levels.> > What else can I check ?> > Thanks for reading, > > Yours confused .... Neil> > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hi

I've had my T3 done privately a year ago and it was found to be lowish, same as

my T4.

However the last 3 tests were done on NHS and the lab won't do a T3 test unless

T4 is very low.

I'm going to check with my GP this Thursday and ask for retest of all TFTs inc

T3 and see if he can persuade the lab to do it this time.

The more I look at stuff online, the more I am beginning to suspect I am either

not converting T4 to T3 or have secondary hypo, mainly because my TSH is really

low given my T4 is only at mid point of normal.

Yours ..... Neil

[Guest guest]

Ask your GP just to write TSH and free T3 on the blood request

form, as though he is trying to ascertain whether you might be hyperthyroid.

That way, the laboratory are likely to test your Free T3.

Luv - Sheila

Hi

I've had my T3 done privately a year ago and it was found to be lowish, same as

my T4.

However the last 3 tests were done on NHS and the lab won't do a T3 test unless

T4 is very low.

I'm going to check with my GP this Thursday and ask for retest of all TFTs inc

T3 and see if he can persuade the lab to do it this time.

The more I look at stuff online, the more I am beginning to suspect I am either

not converting T4 to T3 or have secondary hypo, mainly because my TSH is really

low given my T4 is only at mid point of normal.

Yours ..... Neil

[Guest guest]

Hello Neil,

Well I'm just very frustrated and need a shoulder to cry on .....

No problem – that's what we are here for ;o)A letter has arrived from my Endo, requesting I drop back down to 50mcgLevothyroxine and has noted that he still feels there is no clinical relevanceto me being on it at all !

Well, it takes two to tango....and I for one would not take those `instructions' lying down (unless you feel that a reduction feels `right')New blood tests show my TSH have dropped to 0.07 with Free T4 being 18, noreference points noted however I suspect the usual of .40 to 3.5 and 9 to 25respectively.Ok – your TSH is now suppressed .... so what?? Mine has been < 0.03 for a couple of years now, and I assure you, I am very much alive and kicking and not in the least bit hyperthyroid ;o) - but joking aside.....your endo obviously believes in the fairy tale that a suppressed TSH must mean the patient is going hyperthyroid..... How did he ever qualify to become an endo, I wonder?

I apologize for sounding so flippant, but it sounds like groundhog day. Thousands of GPs and endos out there all coming up with the same old chestnut of a suppressed TSH having to be diagnostic for hyperthyroidism. Do you know the story of the emperor's new clothes? It seems to me that doctor's just paying kudos to the leaders of the BTA , RCP and God knows what other self appointed organizations out there, who are feeding their followers the wrong information for reasons best known to themselves.

Whilst I appreciate the concern from him that I'm almost suppressed and that isa bad thing ? Right/Wrong ? I'm not sure and totally confused.

Wrong! Definitely wrong..... A TSH is – as the title suggests - a thyroid stimulation hormone. It is not a thyroid hormone, it is a pituitary hormone and a signal for the thyroid gland to produce more thyroid hormone.... or not, as the case may be (when the TSH is suppressed).

The cycle is as follows: The hypothalamus senses from a combination of cell feed-back, environmental influences, FT4 and FT3 in the blood stream if more of the active hormone (FT3) will be needed inside the cells. If so, the hypothalamus will secrete TRH (thyrotrophin release hormone) to the near-by pituitary gland and this is the command for the pituitary to produce some TSH and send it to the thyroid gland. The thyroid gland - if able – will obey and secrete the inactive hormoneT4 (~80%) and to a lesser degree, the active hormone T3 (~20%) into the blood stream. From there the active T3 will be taken up straight away by the cell (I am simplifying for demonstration purposes, because that uptake depends on a few other factors) and the T4 will be on stand-by until called upon, and when that happens, the body will convert the T4 into T3, which will then also go into the cells. As I said, this is just a demonstration of how things (are supposed to) happen.

Consequently it follows that if and when sufficient thyroid hormone is supplemented from the outside (by taking Levothyroxine, for instance), all the body's needs are met. T4 gets into the body, gets converted into T3 as needed, and the cells report to the hypothalamus – thank you very much, we have all we need -..... consequently there will be no TRH demand sent to the pituitary, and the pituitary will not send a TSH demand to the thyroid – why should it ??? So a fall of TSH alone in a medicated patient (and that is an important distinction as opposed to an unmediated patient) does not indicate that this patient is becoming hyperthyroid. Only an excess in FT4 and FT3 in conjunction with a suppressed TSH would indicate that..... and your FT4 is not even at the top of the ref range, and your FT3 ... well God knows where that is, since it has not even been measured.... so don't worry, you are not getting hyperthyroid. Here is the history of blood tests over the last 12 months.March (2010) - TSH - .60 - Free T4 - 9 (No Levothyroxine)June (2010) - TSH - .20 - Free T4 - 17 (50mcgs Levo)January 2011 - TSH - 0.07 - Free T4 - 18 (75mcgs Levo)The clinical basis for the initial 50mcgs are that I show classic signs of Hypo,however TSH shows Hyper, Free T4 however confirms Hypo.

That is one thing I have to say in favour of your endo..... he dared to treat you on the basis of hypothyroid symptoms, despite your TSH being well within the norm – BRAVO ! (and I really mean that). You won't find many endos who would be prepared to do that.

However, your subsequent TSHs do not paint a picture of hyperthyroidism – without seeing an FT3 it is impossible to say what they show.... the picture painted is that of sufficient thyroid hormone inside the cells, because the TSH is suppressed, which indicates that all is well inside the cells (although that can be misleading). Your FT 4 is still a bit low, but don't be fooled by it – as I explained above, the T4 is waiting in the wings to be called upon – when it does, and part of it is converted into T3, the figure will drop. So this figure is not a constant..... it is NOT the FT4 that will tell you what is going on, but the FT3 .... and that one had not been done. So basically, what you are looking at in June and Jan tells you nothing much. The key figure – FT3 – is missing. But I can promise you one thing... your suppressed TSH is not an indication that you have gone hyperthyroid. Your FT4 indicates otherwise, and your FT3 – well, we haven't got that, have we? And last, but not least – if you were becoming hyperthyroid, believe me, you would feel it !Latest blood test show only very slight increase in Free T4 and significantreduction in TSH.

Exactly! So what does that mean? .....well, there is no easy answer to that. It could have any number of explanations, but without having more information, it is impossible to say. So you need more tests – namely:

a) What is the status of your adrenals? (please read everything you can find on adrenal function in our files – fill in the questionnaire... if your result is low, you may need a private salivary test to show the state of your adrenal function (never mind what your blood results showed) A morning cortisol blood test will not give you the answers you need, although the actual figure (which you haven't got ) would give you some indication of how much cortisol might be available for your body throughout the day.

Ask your GP or endo for the following blood tests: Ferritin, Magnesium, Folate, Zinc, Copper, Vit B12 and Vit D3. – those test can be done on NHS – don't let anyone tell you otherwise. If you were low (even if low within the ref range) that could prevent thyroid hormone from getting inside the cells.

c) Have you got amalgam fillings in your teeth? If yes, you may want to consider having them taken out.... beware, you'd need a dentist who knows what s/he is doing, and it may be quite costly.

d) Is there a possibility that you might suffer from Candida Albicans? Again, read everything you can about it in the files and if you score high in the questionnaire, test privately and see the extend of the damage.... yeast overgrowth will also prevent thyroid hormone from getting into the cells.

e) Ask your doctor to also do a thyroid autoantibody check – TPO , TgAB and TraAB – this is just to check if your thyroid problem might be autoimmune .... most are.

There are other considerations, but the above are the main ones – so have it checked out.

What am I missing here, I thought the TSH would only drop if Free T4 was high,mine is still just at mid point on the reference range.

No, forget that. It does not work like that – see above.

Am I right to suspect that I have secondary hypothyroidism due toHypothalimus/Protuitiary gland issue ?

Well, that is a possibility..... but would need some more testing. Without even having the basic figures like TSH, FT4, FT3 and a thyroid antibody count it is impossible to draw any further conclusions. My axis does not seem to react/reflex how I understand it should do on a healthyperson.

See above...... this is a possibility, but you would need specialist tests to check out your pituitary function.

Have received list of Drs from Sheila (thanks again), I think I'm going to haveto get a second opinion.

Good idea – Choose your endo carefully though. Some doctors are only on that list because they are willing to prescribe a combo of T4 and T3 or are pro-natural desiccated thyroid and not necessarily for their bedside manners. All other hormone/blood tests showing normal ranges, no Cushings or s etcand normal Cortisol and Adrenal levels.

"Normal" is a term that doctors use too casually.... normal to them means `within the ref range' ... and that can be very misleading. It is important to know whereabouts in the norm range the figures lie. Always ask for copies of the actual figures, inclusive of the ref ranges, because those vary from lab to lab and you always have to look at the figures in relation to the individual ranges. The most important information of all is – how do you actually FEEL ?What else can I check ?

Please see above....I hope you are now a little less confused, Neil, but I have to admit, it's a mine field.... my best advice is....

a) buy and read Dr. Peatfield's book "your thyroid and how to keep it healthy". It's brilliant......

listen to your body .... if you feel ok on your current dosage, then defend yourself and keep on with it. Your wellbeing is a better gauge than any blood test. If it feels right, then probability is, that is IS right..... you know the old saying.... if it walks like a duck, quacks like a duck, looks like a duck.......

Very best wishes,

[Guest guest]

Many thanks for your thorough response, it's great to get someone else's

thoughts on this.

I now have many questions and requests of my GP, I only hope he remains open to

discussion.

Will report how I get on.

Cheers .... Neil

[Guest guest]

please would anyone tell me of an nhs endocrinologist who will treatclients who a low temp and all other symtoms of hypothyroidism although blood tests dont show this.

i feel desperate for help with this and have been mostly housebound for 3 years with severrity of my hypothyroid symptoms. especially difficult as i hasve 2 young boys 7 and 9 years.

I live in bolton and would be happy to go almost anywhere to find an NHS endocrinologist who would treat my hypothyroid symtoms,

Kindest Regards, Bernie

From: <christina@...>thyroid treatment Sent: Tue, 25 January, 2011 19:12:43Subject: Re: Arghhhh

Hello Neil,

Well I'm just very frustrated and need a shoulder to cry on .....

No problem – that's what we are here for ;o)A letter has arrived from my Endo, requesting I drop back down to 50mcgLevothyroxine and has noted that he still feels there is no clinical relevanceto me being on it at all !

-->

[Ed]

[Guest guest]

Whilst no one could suggest that you self treat, I will however, tell you what I

did.

After crawling around on the floor with a TSH of 4 and

having been able to get copies of my blood tests, and in particularly FreeT3 and

FreeT4, ferritin and if possible salivary cortisol, I set about learning as much

as I could about self treating with natural dessicated thyroid, which contains

all the hormones our thyroid would normally put out. (possibly ERFA brand) which

I brought in from overseas internet pharmacy (see files) and self treated after

ensuring that my adrenals were supported. gasp !!! (What a long sentence)

NHS Doctors are not allowed to treat outside the blood test ranges or could find

themselves in front of the GMC even if they wanted to.....

I would make sure I have sufficient Vit C, Vitamin D3, Zinc and magnesium.

Knowledge is power Bernadette.........

If you have copies of your most recent bloods, perhaps post together with

(ranges) and one of the clever mavens here will cast their eyes over them and

comment.

There is a solution, many here have found it and regained their life, so can

you. You have taken the first step by coming here, now just keep asking

questions and learning what the drs either dont know or arent allowed to tell

you, and that includes the Endo-PRATS... IMHO

regards

F

>

> please would anyone tell me of an nhs endocrinologist who will treatclients

who

> a low temp and all other symtoms of hypothyroidism although blood tests dont

> show this.

>

> i feel desperate for help with this and have been mostly housebound for 3

years

> with severrity of my hypothyroid symptoms. especially difficult as i hasve 2

> young boys 7 and 9 years.

>

> I  live in bolton and would be happy to go almost anywhere to find an NHS

> endocrinologist who would treat my hypothyroid symtoms,

>

[Guest guest]

Hi, Have a look in the forum files- there is a list of labs there. thyroid treatment From: rtdbateman@...Date: Wed, 26 Jan 2011 07:15:40 +0000Subject: Re: Re: Arghhhh

Hi Neil.

who did you get to do your t3 levels privately please. i have been very ill for 3 years and have all the symptoms of hypothyroidism although endocrinologist says my blood results dont indicate this.

good luck with your search for improved health.

Kind Regards, Bernie

From: myworlduk <myworlduk@...>thyroid treatment Sent: Tue, 25 January, 2011 17:18:10Subject: Re: Arghhhh

Hi I've had my T3 done privately a year ago and it was found to be lowish, same as my T4.However the last 3 tests were done on NHS and the lab won't do a T3 test unless T4 is very low.I'm going to check with my GP this Thursday and ask for retest of all TFTs inc T3 and see if he can persuade the lab to do it this time.The more I look at stuff online, the more I am beginning to suspect I am either not converting T4 to T3 or have secondary hypo, mainly because my TSH is really low given my T4 is only at mid point of normal.Yours ..... Neil

[Guest guest]

Hi

You can get tested for FT3 only at lab21 it costs £17.

You can use Genova diagnostics and have a full thyroid panel which checks TSH,

FT4, FT3, and autoantibodies, we as TPA members get a discount there so worth

doing, I think it's about £75 (with discount all info is in the files section)

although you do need to get someone to draw your blood for you.

If you haven't had your thyroid antibodies checked it's worth doing as lots of

people who are symptomatic of hypo but still have blood results within lab

ranges have Hashimotos thyroiditis, an autoimmune condition.

If you have any results from the blood tests you have had done post them here

and we can help interpret them, just because they are within the lab range

doesn't mean they are normal.

I'm sure some other the more experienced members in the group will chip in and

help you on the road to recovery.

Take Care

Sandie.

>

..

>

>  who did you get to do your t3 levels privately please. >

>

>  

>

>

>

[Guest guest]

Bernie

I have private health care insurance through my partner's employer and decided

after several refusals and a frank discussion with my former GP to use it and

went to see an Endo at my local private hospital in Glasgow.

His initial diagnoses was depression and cfs, however after challenging him

about the last blood tests he did, he conceeded that my T3 was lowish and agreed

to trial for 3 months of 50Mcgs of Levothyroxine, he curtly dismissed it would

do any good.

Upon my return 3 months later, I was able to tell him how much better I felt,

new bloods did show some improvement in Free T4, so he agreed I was hypothyroid,

allthough biochemically euthroid.

He sent my GP a letter informing them of diagnosis of mild hypothyroidism and to

monitor until I was to return 6 months later.

Unfortunately, my healthcare provider decided that as I had a diagnosis, they

would not fund further consultations and tests, so my GP referred me to the same

Endo at his NHS clinic in Glasgow.

I suspect his reaction to the GP increasing my dosage and loss of private

funding, might have irritated him somewhat and is why I'm looking for someone

else for second opinion.

Good luck.

Neil

[Guest guest]

That is the problem with health insurance Neil, they do not pay for chronic problems and once diagnosed hypothyroidism is considered a chronic matter.   Health insurance also does not pay for 'preventative' stuff either.

Lilian

[Guest guest]

Hi Neil ,thanks for sharing your story .i just need to find an NHS conultant that will trial me on levothyroine. how soon did it take for you to feel improvement of your hypothroid symtoms please?

Kind Regards, Bernie

From: myworlduk <myworlduk@...>thyroid treatment Sent: Wed, 26 January, 2011 15:01:26Subject: Re: Arghhhh

BernieI have private health care insurance through my partner's employer and decided after several refusals and a frank discussion with my former GP to use it and went to see an Endo at my local private hospital in Glasgow.His initial diagnoses was depression and cfs, however after challenging him about the last blood tests he did, he conceeded that my T3 was lowish and agreed to trial for 3 months of 50Mcgs of Levothyroxine, he curtly dismissed it would do any good.Upon my return 3 months later, I was able to tell him how much better I felt, new bloods did show some improvement in Free T4, so he agreed I was hypothyroid, allthough biochemically euthroid.He sent my GP a letter informing them of diagnosis of mild hypothyroidism and to monitor until I was to return 6 months later.Unfortunately, my healthcare provider decided that as I had a diagnosis, they would not fund further consultations and tests, so my GP

referred me to the same Endo at his NHS clinic in Glasgow.I suspect his reaction to the GP increasing my dosage and loss of private funding, might have irritated him somewhat and is why I'm looking for someone else for second opinion.Good luck.Neil

[Guest guest]

>

> Hi Neil ,thanks for sharing your story .i just need to find an NHS conultant

> that will trial me on levothyroine. how soon did it take for you to feel

> improvement of your hypothroid symtoms please?

>

>

> Kind Regards, Bernie

Hi Bernie

For me it was a case of rational discussion with the Endo, I guess I am lucky

reading some of the responses I see, to having been fortunate enough for him to

agree to a trial run.

My symptoms are not all gone, some I suspect may never go completely, after all

I've suffered years feeling almost dead, it will take me time for my body to

adjust to " normal " , the fatigue, brittle nails, cold extremities and depression

have improved significantly and I began to feel better after about 6 weeks.

My Endo did make the mistake of saying to me when I had my follow up, that when

it comes to hormones, it's a bit like trying out a new recipe, never quite sure

how it will pan out, but always worth a bit of experimentation.

I truly hope you find someone that will listen to you.

Yours... Neil

[Guest guest]

Well I'm flabberghasted !

I went to see my GP to discuss the letter from my Endo, who requested a

reduction from 75mcg to 50mcg Levothyroxine.

He logged into the " nhs blood system " and said, aah he hasn't tested your T3 and

your T4 is not that much higher than when you were on 50mcg.

To which I asked his opinion on the request and advice on next steps.

He doesn't want me to drop the dosage, after all he says, you may feel lousy for

a few weeks till you adjust to the lower level and he isn't convinced I'm

hyperthyroid either.

The results are confusing to him too, so he's asked me to stay on 75mcgs for a

few more weeks and to retest within a month.

He noted that I've just finished a 7 week rounds of 4 different antibiotics and

I also take Diclufenic, which he says can have the effect of a false low TSH.

I asked if I should see another Endo and he thinks I should see the one I

already see, apparently he's the best in Glasgow and says even though he has the

bedside manner of a grizzly, I'm in the best of hands with this one.

He said he once treated a patient with a Pituitary tumor, which prevented the

Pituitary from excreting TSH and resulted in similar results to mine.

In the next breath he did say it was very rare and that perhaps if T3 comes back

on lowish side that further tests along this avenue would be worth looking into.

All in all seems more positive that this time last week.

Yours .... Neil

[Guest guest]

GOSH - a sensible GP !!! You are a lucky man, Neil

However.....

He noted that I've just finished a 7 week rounds of 4 different antibiotics andI also take Diclufenic, which he says can have the effect of a false low TSH.

http://rheumatology.oxfordjournals.org/content/21/1/42.full.pdf

According to the above study he's got it wrong about the Diclofenac and I haven't heard that antibiotics interfere with the TSH either.... though NSAIDs may have - according to the above study- an initial influence on lowering the FT4. Antidepressants, drugs for epilepsy and glucocorticoids can interfere with the TSH, but I don't think non-steroidals or antibiotics do. Still, your GP is prepared to listen to you and even suggests further testing, and he knows about the pituitary aspect re TSH and encourages you to carry on with your current level of thyroid medication - so he is a reasonable man and by the sounds of it genuinely wants to help .... a GP worth holding on to, IMO. It makes a pleasant change from the usual reports about our GPs.

Best wishes,

[Guest guest]

Hi Bernie, I have responded to you off forum.

Luv - Sheila

please

would anyone tell me of an nhs endocrinologist who will treatclients who a low

temp and all other symtoms of hypothyroidism although blood tests dont show

this.

i

feel desperate for help with this and have been mostly housebound for 3 years

with severrity of my hypothyroid symptoms. especially difficult as i hasve 2

young boys 7 and 9 years.

I

live in bolton and would be happy to go almost anywhere to find an NHS

endocrinologist who would treat my hypothyroid symtoms,

Kindest

Regards, Bernie

[Guest guest]

Bernie - telephone your GP and ask for your last thyroid

function test results and any other recent blood tests you have had done. Ask

also for the reference range for each of the blood tests that were done.

Doctors are not allowed to withhold these from you - this is covered under the

data protection. Also, once you get them, post them in a message to the forum

and we will help with interpretation. Doctors will tell you that you don't have

a problem if your results come back ANYWHERE within the reference

range. They are not taught how to interpret these.

You can get your free T3 tested at Lab21. http://www.lab-21.com/healthcare/thyroid.php

Luv - Sheila

Hi

Neil.

who

did you get to do your t3 levels privately please. i have been very ill for 3

years and have all the symptoms of hypothyroidism although endocrinologist says

my blood results dont indicate this.

good

luck with your search for improved health.

Kind

Regards, Bernie

,_._,___

[Guest guest]

Excellent!

Luv - Sheila

When my endo mentioned that my TSH wasn't too

supressed I said' Remind me again, why I would need TSH? My thyroid is dead so

why would I want it stimulating?

He couldn't answer that!!

Glynis

,_._,___

[Guest guest]

hI shEILA , Thanks very much for your helpful reply.

Kindest Regarsd, Bernie

From: Sheila <sheila@...>thyroid treatment Sent: Fri, 28 January, 2011 11:31:19Subject: RE: Re: Arghhhh

Bernie - telephone your GP and ask for your last thyroid function test results and any other recent blood tests you have had done. Ask also for the reference range for each of the blood tests that were done. Doctors are not allowed to withhold these from you - this is covered under the data protection. Also, once you get them, post them in a message to the forum and we will help with interpretation. Doctors will tell you that you don't have a problem if your results come back ANYWHERE within the reference range. They are not taught how to interpret these.

You can get your free T3 tested at Lab21. http://www.lab-21.com/healthcare/thyroid.php

Luv - Sheila

Hi Neil.

who did you get to do your t3 levels privately please. i have been very ill for 3 years and have all the symptoms of hypothyroidism although endocrinologist says my blood results dont indicate this.

good luck with your search for improved health.

Kind Regards, Bernie

,_._,___

[Guest guest]

Hi Sheila, Thankyou so much i really appreciate that so much.

KIndest Regards, Bernie

From: Sheila <sheila@...>thyroid treatment Sent: Fri, 28 January, 2011 9:37:53Subject: RE: Re: Arghhhh

Hi Bernie, I have responded to you off forum.

Luv - Sheila

please would anyone tell me of an nhs endocrinologist who will treatclients who a low temp and all other symtoms of hypothyroidism although blood tests dont show this.

i feel desperate for help with this and have been mostly housebound for 3 years with severrity of my hypothyroid symptoms. especially difficult as i hasve 2 young boys 7 and 9 years.

I live in bolton and would be happy to go almost anywhere to find an NHS endocrinologist who would treat my hypothyroid symtoms,

Kindest Regards, Bernie

[Guest guest]

Is

there any chance you might be suffering with systemic candidiasis. This lines

the gut walls, where thyroxine needs to be absorbed. If you have Candida, this

must be treated before the thyroxine will work properly. Taking antibiotics can

cause candida to thrive. Also, ask your GP to test your levels of ferritin,

vitamin B12, vitamin d3, magnesium, folate, copper and zinc because if any of

these levels are too low, once again, the thyroid hormone cannot be absorbed at

cellular level. Post the results once you get them here on the forum, together

with the reference range.

Luv - Sheila

Well I'm flabberghasted !

I went to see my GP to discuss the letter from my Endo, who requested a

reduction from 75mcg to 50mcg Levothyroxine.

He logged into the " nhs blood system " and said, aah he hasn't tested

your T3 and your T4 is not that much higher than when you were on 50mcg.

To which I asked his opinion on the request and advice on next steps.

He doesn't want me to drop the dosage, after all he says, you may feel lousy

for a few weeks till you adjust to the lower level and he isn't convinced I'm

hyperthyroid either.

The results are confusing to him too, so he's asked me to stay on 75mcgs for a

few more weeks and to retest within a month.

He noted that I've just finished a 7 week rounds of 4 different antibiotics and

I also take Diclufenic, which he says can have the effect of a false low TSH.

I asked if I should see another Endo and he thinks I should see the one I

already see, apparently he's the best in Glasgow and says even though he has

the bedside manner of a grizzly, I'm in the best of hands with this one.

He said he once treated a patient with a Pituitary tumor, which prevented the

Pituitary from excreting TSH and resulted in similar results to mine.

In the next breath he did say it was very rare and that perhaps if T3 comes

back on lowish side that further tests along this avenue would be worth looking

into.

All in all seems more positive that this time last week.

Yours .... Neil

[Guest guest]

Hi Sheila

Mentioned this to my GP and he thinks I am ok, but is willing to test for these

after the results of my latest TFTs are received.

It seems I am absorbing as my TSH has reduced significantly, but this could be

related to other meds I take, apparently there is a long list of meds that can

affect the TSH assays in various ways.

Let you know how I get on.

yours... Neil

[Guest guest]

Evening everyone

Well I've had a call from the Drs and they have advised me that some blood test

results have come in and one of them is low.

I had further TFTs done, following my Endo's request to reduce dosage of

Levothyroxine. I'm told my results are:

TSH = 0.17 up from 0.07 (Range is not known)

T4 = 16.5 down from 18 (Range is not known)

Receptionist mentioned that my " Phosphate " levels were very low, I don't have

the precise number, but my GP has requested I restest in a week.

I am on a diuretic and have been for over 2 years, so suspect this may be the

cause for the low result, however this is very low and I've never had it

mentioned before.

Can anyone explain what this Phosphate is and perhaps it's interaction with my

thyroid ?

Yours ... Neil