RE: First NHS Endo visit this morning...

[Guest guest]

Hi Kerry,

I can only comment concretely on one question, regarding private consultation.

Yes, you will be seen within (a very few) days. This was, to me, a Godsend when

I was hyperthyroid. In hindsight the consultant wasn't the best, but I was

certainly seen quickly.

It will be expensive to go private; I am lucky to have BUPA cover so I only pay

an excess.

In fact, in hindsight, perhaps going privately for me led me too quickly to

accept radio-iodine (later research showed that the thyroid can recover).

So 2 points, IMO

1) Find the best consultant - I'd say most important

2) Decide if you can wait for NHS or afford the private bill

There's no point paying unless you are very confident s/he is a good guy.

I don't know if we (mere mortal patients) are allowed to specify any consultant

we like, anywhere in the country?

[Guest guest]

Thanks , yes, I totally agree with you that finding the best consultant has to be key. I know that we aren't allowed to mention the specific name of any consultants publicly in the forum but they can be discussed privately between members.

I have an idea of who I would like to see if I go private but haven't made my mind up yet whether to wait on the NHS. Thanks so much for your previous email by the way (sorry I haven't responded yet - what with felling ick, looking after a 16 month year old & trying to conduct hypothyroid research I've been a bit strapped for time!).The points you raised were really interesting & although the Endo today didn't raise the issue of AD its certainly something I would consider.

Thanks for your support , you've been brilliant xOn Fri, Mar 18, 2011 at 11:48 AM, decanibass <idkjunk@...> wrote:

 

Hi Kerry,

I can only comment concretely on one question, regarding private consultation.

Yes, you will be seen within (a very few) days. This was, to me, a Godsend when I was hyperthyroid. In hindsight the consultant wasn't the best, but I was certainly seen quickly.

It will be expensive to go private; I am lucky to have BUPA cover so I only pay an excess.

In fact, in hindsight, perhaps going privately for me led me too quickly to accept radio-iodine (later research showed that the thyroid can recover).

So 2 points, IMO

1) Find the best consultant - I'd say most important

2) Decide if you can wait for NHS or afford the private bill

There's no point paying unless you are very confident s/he is a good guy.

I don't know if we (mere mortal patients) are allowed to specify any consultant we like, anywhere in the country?

[Guest guest]

Sorry , think I actually mis-read the point you were making re seeing who we wish......yes, I think we can see anyone in theory but I think its best to get a referral from your GP. (I guess to keep them in the loop, although this might not be essential or preferable for some patients). I'm not clear on the actual 'rules' though?!

Kerry

[Guest guest]

I had my first NHS Endo visit today & I

have mixed feelings about it really. He was a nice enough guy & let me go

through all of my symptoms. He agreed to the following which took a bit of

persuasion:

To provide reference ranges for all future blood tests

To test my TSH, free T4 & T3 (although he did say that he didn't think

seeing the free T3 would show us anything)

To test for D3 & Magnesium

To test my adrenals via the Synacthen Test

Te re-test my ferritin, folate & B12 - although he said all were fine

except my ferritin was a bit low but still normal. (By the way, my ferrtin is

currently 27 which I now understand is very low & my B12 is 342, again, on

the low side).

To be quite honest Kerry, no doctor in this land can keep any part

of your medical records from you, including blood test results. S/he is bound

by law to let you have access to all of these. Sadly, doctors know little about

how to interpret blood tests, which he has proved by telling you that your B12

and ferritin are 'normal' when both are very low. Again, this is the case of a

doctor believing that just because your results have come back within the

'normal' range, this means you don't have a problem. Such doctors really do

worry me because they are causing harm to their patients, but nobody is telling

them they are, and giving them the reasons WHY they are.

Also, unless you are suffering with 's Disease (too

little or no cortisol secretion) or Cushing's Syndrome (too high a level of

cortisol secretion) this test will be a complete waste of time and money. This

short synacthen test does NOT check for low adrenal reserve, or indeed, any

steps in your adrenal function that are actually LEADING to either 's or

Cushing's. You will need to get the 24 hour salivary profile done through

Genova Diagnostics privately.

He didn't agree to the following tests:

Didn't want to do a full hormone profile including DHEA but said he would check

my DHEA following the adrenal test if necessary.

I doubt very much this will show anything.

Said there was no test for systemic

candidiasis, mercury poisoning, copper or zinc (I've no idea if this is true

& to be honest I just asked if he knew of any tests & appreciate an

Endo might not be the best person to ask this sort of question to?).

I don't know what tests the NHS do for systemic candidiasis, but

you can get this tested (again through Genova) to see if you have candida

antibodies. Neither do I know what tests they do for mercury poisoning, but

there must be something. There most definitely IS NHS testing for

copper and zinc, I know, because my endocrinologists particularly wanted me to

have these tested and they need more blood than usual for the copper and zinc

test. That is why it is often taken in two lots if this is included with other

tests.

He had no idea of how to check for any possible

iodine defficiency (although to be fair this is probably out of his field &

perhaps difficult to diagnose?).

As an endocrinologist, he should know of the connection with iodine

deficiency problems that is the cause of hypothyroidism. How on earth can he

even call himself an endocrinologist without knowing about iron deficiency.

He had no idea of how to check for any possible

food intollerances/malabsorption (again, I only really asked this question for

advice as probably out of his field)

He said my melatonin levels could not be checked/measured

I don't think you really need to see this particular guy again -

he knows too little, and happily admits it too.

My BP was taken on sitting down only, 115 over

69 which he said was fine & my pulse rate was 101.

Your pulse rate was rather fast, but possible through tension

experienced whilst sitting there worrying about just how much or how little

this guy knew about thyroid problems.

When I bought the issue up, he did seem open to

the idea that T4 only might not be working for me but he stated that this would

be most unusual since at least 90% of people taking Levothyroxine do fine on it

& the majority for some reason or other don't.

Again, that's why we have over 2000 members here who have been

left suffering within the NHS. He should spend a couple of days on this forum

and then tell his patients that at least 90% of those taking T4 only do fine.

There are, in fact, over quarter of a million suffers in the UK alone who are

being left without the correct thyroid hormone that would give them back their

normal health - and who are being left on T4 only. They have been brainwashed

by the BTA and can't even think for themselves. If their patients have normal

thyroid function test results, are taking T4, yet suffering the symptoms of

hypothyroidism, their doctors more often than not tell them " it's all in

your head " and try to prescribe them antidepressants.

He did say that depending on the test results

that T3 might be an option or a T4/T3 combination which filled me with some

hope but I do have reservations on his ability to interpret test results. He

also didn't believe that you could get natural thyroid on the NHS, private

only, although I did mention the 'Named Patient Basis' & did try to gently

assure him that you could, not sure if he believed me or not.

When you get your thyroid function test results back, post them

here and WE will help with their interpretation. I wouldn't trust this doctor

as he believes ferritin of 27 and B12 of 300(odd) are 'normal' results. Grrr!

We can soon enlighten him about doctors being able to prescribe natural thyroid

within the NHS - I have letters from the MHRA that tell him and every doctor

that yes they can - if their patients doesn't get back normal health on

synthetic T4 alone. Doctors however, have to take this responsibility on

themselves because natural thyroid extract remains unlicensed. But there are a

growing number of NHS doctors who are now prescribing it because they know

their patients are doing much better on it. I was the first patient my

endocrinologist ever recommended Armour Thyroid to, he is now prescribing it to

over 20 others. Word is slowly getting round.

I explained that some days I simply can't

function, feel very faint, extreme fatigue, nausea, continuing to loose weight

(lost half a stone in 6 weeks & I do NO exercise) & what I'm left with

is an instruction to continue taking my Levothryoxine as " my TSH is fine "

(my free T4 is 20.9 & I'm concerned that I might be toxic with T4) & an

appointment to do the tests on 3rd June! I guess this is normal for the NHS

though in terms of waiting times to actually have the tests done? I did say

that I found the thought of waiting that long just to get the tests quite

tricky to digest since I have been feeling so unwell but he said he wasn't over

concerned as my snap shot cortissol blood test result was 231 nmol/L which is

fine.

You should NOT have to wait so long to get y our blood tested.

My endocrinologists gives me a blood request form and tells me to come and get

tested when it is convenient for me. I pop into the hospital, go to the Path

Lab, take a ticket out of a machine that gives me a number. My number is called,

I pop into, sit down, get my blood drawn and she tells me roughly when the

results come back. I then telephone and ask if they are complete. I then phone

my endocrinologist who has them on his computer and he tells me if there needs

to be a change in my medication. Simple and quick. If you have been given a

blood request form, do just that Kerry. You can go in any day you wish. Waiting

for over 3 months could mean you could become really ill - don't let that

happen.

Perhaps some of you will read this & think

I am lucky to have this Endo, I don't know! I have a feeling he is middle

ground.

He is!

I have ordered the 24hour salivary test

privately & if that indicates that I might have adrenal fatigue then I may

have to think about going private as I'd be too worried the T4 medication could

do more damage to my health by 3rd June let alone waiting for the results,

follow up consultation etc....

I agree.

Does anyone know if the adrenal Synacthen test they are offering is more

reliable than the 24hour salivary test?

No, it only tests to see whether you have the two extremes i.e. 's

or Cushing's. If you have either of them, then it will be fine to get this test

done.

Presumably, if I decided to go private, I

wouldn't have to wait so long for the tests to be done?

You don't have to wait this long within the NHS to get the

testing done - honestly. Let us know whether the endocrinologist gave you the

blood form.

Luv - Sheila

[Guest guest]

Does anyone know if the adrenal Synacthen test they are offering is more reliable than the 24hour salivary test?

No, it only tests to see whether you have the two extremes i.e. 's or Cushing's. If you have either of them, then it will be fine to get this test done.

Just to expand a little on the above..... these two tests are employed for different reasons.

The 24 hour salivary profile will give an indication of how much (or how little) cortisol the adrenal glands are producing during a 24 hour period. Even when the result is pretty low (or extremely low) it would not automatically mean that a person suffers from 's disease. Exhausted adrenal glands can result in a very low cortisol output, which is however not the same as having ones adrenal glands destroyed by an autoimmune condition.

Primary 's is such an autoimmune disease and an SST would diagnose this condition. When a patient is "just" suffering from adrenal fatigue, the rather large amount of ACTH that is injected during the STT is enough to "make a dead donkey kick" to borrow one of Sheila's phrases. So if there is still life in the old adrenals, then the rather massive amount of ACTH (which is not normally forthcoming in such doses) will kick-start the adrenals into producing cortisol at least for the demonstration purpose of the test ....

The big, big difference between adrenal fatigue and adrenal insufficiency (primary 's disease) is that the former represents very knackered adrenal function with a low cortisol output – but at least the adrenal glands are basically in working order and with a little TLC can (in most cases) be coaxed back to full function.

The latter represents the inability to produce sufficient cortisol for a patient to survive without cortisol intervention. The adrenals will never recover and produce sufficient cortisol again because they are getting destroyed by autoantibodies in the same way that (different) autoantibodies are destroying our thyroid gland in case of Hashimoto's disease. In case of primary 's a patient would need mineral- and glucocorticoid replacement for life.

To sum up – a 24-hour adrenal profile may show low adrenal function overall, but it will not tell you if a person suffers from 's disease, whereas a Synacthen Stimulation test would tell exactly that.

Best wishes,

[Guest guest]

Can you ask for 24 ur urinary free cortisol test? That will show how much

cortisol is produced over a day. I've heard that saliva cortisol can be low if

cortisol is cleared quickly.

Chris

>

> Hi all,

>

> I had my first NHS Endo visit today & I have mixed feelings about it really.

He was a nic

>

> Thank you x

>