Endo Visit

[Guest guest]

Google is your friend

That is what I do and look for an easy-read model cos I am going blind as a bat. And I still need to find my specs to be sure, to be sure, to be sure....

There are non-mercury liquid ones also which do as good a job I believe and they are a bit more pricey.

Mo

The sugar just showed in my urine Mo, I did think that the blood one should be fasting, but they took blood for that anyway. No I dont show any symptoms of diabeties apart from the tiredness.

Could you tell me Mo where to order an accurate thermometer from if you know of anywhere?--- On Wed, 24/9/08, moosbornetiscali (DOT) co.uk <moosbornetiscali (DOT) co.uk>

Did you fast overnight for the blood glucose test ?

Mo

Just got back from my appointment, he was actually a nice enough man, but did rubbish my adrenal profile results as very inaccurate, I pointed out the grey areas between s and Cushings but he didnt seem to agree, he has advised I stop the HC so they can do their adrenal tests, when I saw Dr P and he did the adrenal tests on me he didnt seem to think my adrenals were too bad and it was me who asked him if I could start the HC, he didnt tell me at our meeting to start it, so I think I will boost my adrenals in other ways and gradually reduce the HC. The endo did say I could just stop as I havent been on it long, 5 weeks but not at full 20mg dose, but I said I would prefer to withdraw slowly. He took bloods etc and there were traces of sugar in my urine so hes took blood for diabeties too, maybe thats why I havent felt well?! Who knows. He did say I could go back straight on 150mcg of T4 but I said no way! I said I would wait until I get the bloods back from today and see where my levels lie. So all in all I did know what he would say and no surprises really. He did say the 20mcg of HC would be too much if my adrenal were ok and could cause me problems, weight gain etc and I said well it hasnt made me feel any better!I dont think I should have a problen stopping the HC but will taper it anyway

Do you value your online security? - http://www.tiscali. co.uk/security

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[Guest guest]

Ive ordered a new one of the Bupa website

Google is your friend

That is what I do and look for an easy-read model cos I am going blind as a bat. And I still need to find my specs to be sure, to be sure, to be sure....

There are non-mercury liquid ones also which do as good a job I believe and they are a bit more pricey.

Mo

The sugar just showed in my urine Mo, I did think that the blood one should be fasting, but they took blood for that anyway. No I dont show any symptoms of diabeties apart from the tiredness.

Could you tell me Mo where to order an accurate thermometer from if you know of anywhere?--- On Wed, 24/9/08, moosbornetiscali (DOT) co.uk <moosbornetiscali (DOT) co.uk>

Did you fast overnight for the blood glucose test ?

Mo

Just got back from my appointment, he was actually a nice enough man, but did rubbish my adrenal profile results as very inaccurate, I pointed out the grey areas between s and Cushings but he didnt seem to agree, he has advised I stop the HC so they can do their adrenal tests, when I saw Dr P and he did the adrenal tests on me he didnt seem to think my adrenals were too bad and it was me who asked him if I could start the HC, he didnt tell me at our meeting to start it, so I think I will boost my adrenals in other ways and gradually reduce the HC. The endo did say I could just stop as I havent been on it long, 5 weeks but not at full 20mg dose, but I said I would prefer to withdraw slowly. He took bloods etc and there were traces of sugar in my urine so hes took blood for diabeties too, maybe thats why I havent felt well?! Who knows. He did say I could go back straight on 150mcg of T4 but I

said no way! I said I would wait until I get the bloods back from today and see where my levels lie. So all in all I did know what he would say and no surprises really. He did say the 20mcg of HC would be too much if my adrenal were ok and could cause me problems, weight gain etc and I said well it hasnt made me feel any better!I dont think I should have a problen stopping the HC but will taper it anyway

Do you value your online security? - http://www.tiscali. co.uk/security

____________ _________ _________ _________ _________

Do you value your online security? - http://www.tiscali. co.uk/security

____________ _________ _________ _________ _________

[Guest guest]

Happy temping!

When you taper the h/c you will be able to see how that is affecting your adrenals.

Ditto if you then substitute some other form of adrenal med.

Mo

Ive ordered a new one of the Bupa website

Google is your friend

That is what I do and look for an easy-read model cos I am going blind as a bat. And I still need to find my specs to be sure, to be sure, to be sure....

There are non-mercury liquid ones also which do as good a job I believe and they are a bit more pricey.

Mo

The sugar just showed in my urine Mo, I did think that the blood one should be fasting, but they took blood for that anyway. No I dont show any symptoms of diabeties apart from the tiredness.

Could you tell me Mo where to order an accurate thermometer from if you know of anywhere?--- On Wed, 24/9/08, moosbornetiscali (DOT) co.uk <moosbornetiscali (DOT) co.uk>

Did you fast overnight for the blood glucose test ?

Mo

Just got back from my appointment, he was actually a nice enough man, but did rubbish my adrenal profile results as very inaccurate, I pointed out the grey areas between s and Cushings but he didnt seem to agree, he has advised I stop the HC so they can do their adrenal tests, when I saw Dr P and he did the adrenal tests on me he didnt seem to think my adrenals were too bad and it was me who asked him if I could start the HC, he didnt tell me at our meeting to start it, so I think I will boost my adrenals in other ways and gradually reduce the HC. The endo did say I could just stop as I havent been on it long, 5 weeks but not at full 20mg dose, but I said I would prefer to withdraw slowly. He took bloods etc and there were traces of sugar in my urine so hes took blood for diabeties too, maybe thats why I havent felt well?! Who knows. He did say I could go back straight on 150mcg of T4 but I said no way! I said I would wait until I get the bloods back from today and see where my levels lie. So all in all I did know what he would say and no surprises really. He did say the 20mcg of HC would be too much if my adrenal were ok and could cause me problems, weight gain etc and I said well it hasnt made me feel any better!I dont think I should have a problen stopping the HC but will taper it anyway

Do you value your online security? - http://www.tiscali. co.uk/security

____________ _________ _________ _________ _________

Do you value your online security? - http://www.tiscali. co.uk/security

____________ _________ _________ _________ _________Do you value your online security? - http://www.tiscali.co.uk/security ________________________________________________

[Guest guest]

, what did you have to eat about two hours before you went to see the endo?

Lilian

[Guest guest]

Hi

Could this have anything to do with or be caused by taking HC?

I did the urine sample before eating the apple and about 1 and three quarter hours after my dinner. Can HC make diabeteis worse?

From: Lilian <lilian15ntlworld (DOT) com>Subject: Re: [thyroidpatientadvo cacy] Endo visitthyroidpatientadvoc acygroups (DOT) comDate: Wednesday, 24 September, 2008, 7:20 PM

, what did you have to eat about two hours before you went to see the endo?

Lilian

[Guest guest]



You did not say that . I presumed you did the urine test after just having an apple, whereas you now say you took it one and a half hours after your dinner. This makes a difference - what did you have for your dinner?

Depending on what you had for your dinner, then it is possible you are NOT diabetic at all.

I do not have the faintest idea whether HC has any effect at all.

Lilian

[Guest guest]

Sorry i just thought about when I took the sample and when I had the apple.

I had a sausage roll and a packet of crisps for my dinner at about 11.45. I just checked and it said HC can raise blood sugar levels in people with diabetes, I had my blood sugar checked at the hospital on Monday night, infact they did once at home and again at the hospital and they said it was ok-

 You did not say that . I presumed you did the urine test after just having an apple, whereas you now say you took it one and a half hours after your dinner. This makes a difference - what did you have for your dinner?

Depending on what you had for your dinner, then it is possible you are NOT diabetic at all.

I do not have the faintest idea whether HC has any effect at all.

Lilian

[Guest guest]

Hi Lizzie

Good luck and I hope this time, you get what you want. I would

go in there being VERY positive and tell him that you have felt a recent

improvement but not as much as you would have expected. I guess a lot of what

he will have to say will depend upon your blood test results. Are you now

treating your adrenals and if so, are you going to tell him. If you are using

adrenal supplements such as NA or NAE, I would tend to keep this to yourself.

NHS doctors will not acknowledge that hypothyroid sufferers can have low

adrenal reserve that actually affects their thyroid hormone replacement and he

might get a bit iffy if you start to talk about this. Carry on treating it

yourself and get him instead to answer questions about your remaining symptoms

and what he is going to recommend. It is usually better, as you are no doubt

aware, to write down any questions you want to ask him, because you will

probably forget what these are once you are in the consulting room. Ask

him what he thinks of increasing your T3 and decreasing your T4 a bit - or,

does he feel that in your particular case, because of the other unspecified

hormones and calcitonin in Armour, whether that might be the better option. See

what he says.

Good luck Lizzie - my goodness, you deserve it ;o)

Luv - Sheila

I think I am starting to feel better but I am frightened that it will

stop. I am slowly losing weight 3lbs in last 3 weeks I feel really

happy and optimistic but I don't know why does this make any sense..

My legs feel as though they are bruised when I touch certain areas on

my thighs really tender but they are'nt bruised.

.._,___

[Guest guest]

Hi Sheila

I have reduced the NAE now following Dr Peatfield's advice to 2 at

11am and 1 at 2pm.

I will be keeping this to myself. After saying that I have been

feeling better I have had the worst afternoon in a while with sore

legs. They really do feel as thought they are bruised and very tender.

any ideas?

Love Lizzie

>Are you now treating your

> adrenals and if so, are you going to tell him. If you are using adrenal

> supplements such as NA or NAE, I would tend to keep this to

yourself. NHS

>

[Guest guest]

Oh Lizzie - how frustrating for you. I had my

appointment cancelled three weeks ago with my endoc. because he was sick, and

it still hasn't been re-made. Never mind, this will give you more time to get

your story together.

Luv - Sheila

Hi Sheila

Just got back from the hospital. Arrived to find that my appointment

was cancelled on Monday. They had rung me but I had already set off.

So now i have to wait another week. The NHS is useless you are treated

like cattle. They could have rung yesterday to check that I had

received my letter which thy say was sent out on Monday. There was

another lady there as well who had just arrived.

Just having a rant - you get all psyced up for it and than find out

that you have to wait another week. My appointment had been for last

week and I had changed it to avoid asking for time off work again.

Sorry rant over.

It dosent look promising for me if it is fibromyalgia does it?

Love Lizzie

[Guest guest]

Hi Sheila

I didn't mention Armour because clearly my T4 was still too low at

11.1 so I felt that there was still a chance that the synthetic T4 and

T3 may do the trick. Looking at my last two sets of blood results in

Aug T4 9.2, T3 4.9 increase of T4 25mcg only T4 11.1 T3 5.4. I think

the fact that the T3 has gone up shows I must be converting ok would

you agree. Hopefully by increasing the T4 again it may bring it up to

a more accepatable level and also take the T3 to the top of the range.

He said that I was unusual because my T4 levels go up and down and

that we seem to have a moving target. Most people either go down, stay

the same or increase gradually but aparently I don't confirm to any of

these.

I will monitor my temperatures and I have increased my NAE from two to

three to support my adrenals whilst I increase my T4. BTW I now take

two NAE at 11am and now I will take another at 2pm, the jitteriness

seems to have settled down touch wood.

Love Lizzie

> I am so pleased he was supportive of you Lizzie. I would keep a

daily diary

> of everything that happens to you and also chart your temperatures

as per Dr

> Rind's theory. That way, you will be able to get an idea of what is

> happening. I hope you are able to convert the T4, but if you do get any

> adverse affects, don't hang on this time, do contact Dr B

immediately. Let's

> hope this works for you. Did you get to mention Armour at all?

>

>

>

> Luv - Sheila

>

> Hi Sheila and Everyone

>

> Well I've been to see Dr B.

>

> He was lovely, I was the last patient in an overun clinic and he had

> plenty of time for me.

>

> My blood results were as follows:-

>

> T4 11.1

>

> T3 5.4

>

> TSH 0.11

>

> antibodies 19

>

> I told him that I had felt some improvement but that it had stopped

> and that my leg pains had continued throughout.

>

> He said that an increase was needed but which one. I suggested T3 but

> he said that as it was nearer to the top of the range and T4 was

> nearer to the bottom of the range it would make more sense to put up

> the T4 as it would bring up the T3 as well. So I am to increase T4

> from 125mcg to 150mcg alternate days for four weeks and then if I

> feel okay no hyper symptoms to take 150mcg daily. I have a further

> appointment to see him in eight weeks time. He also said any problems

> to get in touch.

>

> I feel quite pleased with this as I may just be having the leg pains

> because I have still not settled on the correct dose.

>

> Thank you to you all for your support.

>

> Love Lizzie

>

>

>

> _,_._,___

>

[Guest guest]

>

> Hmmm! An Endoprat and a Plonker!

>

>

>

> Hi Shelia

Thank you for this - I know he is mistaken and really wonder why I

even bothered to see him yesterday. I only had 5 minutes with him

eventually, after waiting an hour and a half, and the waiting room was

heaving! I just feel I have to jump through the NHS hoops in an effort

to get my Armour prescribed as the cost is so high and I am now retired.

After so many years of struggling with this disease I feel that the

Vitamin D connection could be the answer and was so demoralised when

he dismissed it without any consideration. Also, out of sheer

desperation, I have had a tendency to clutch at straws in the past and

when your views are ridiculed it's all too easy to become confused an

question your own judgement.

The help I receive from this website is invaluable and in stark

contrast to the treatment I receive from the NHS. I shall continue

with my present dose of Armour and renew my efforts to lose weight.

with best wishes

Mandy

[Guest guest]

Hi Mandy,

You may still have a battle, but with the endo on your side,

even reluctantly it should not a be too much of a problem. Arm your self

with the relevant papers from the files before you see doc.

Subject: Endo visit

Good evening everyone

I have two questions for you which have arisen from an appointment

with my consultant today.

He has told me

that patients on Armour are notoriuosly difficult to monitor and that

I must drop to a lower dose. For the first time in many years I have

been able to loose weight in the last couple of months, and was

delighted, but now worry that this will stop and I will become hypo

again.

On a more cheerful note - when I pressed him, yet again, to prescribe

Armour he said he would write to my GP and ask her to do so. Am I

right in thinking that she will now have to prescribe it now or do I

still have a battle on my hands???

Thanks again for all your help

Mandy

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

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

Hi ,

Today I had my first endo appt after 3 months of Iodoral and I was actually

surprised by the French endo. He is due to retire in July but wants me back to

see him before then as he is researching iodine. He nearly fell off his chair

when I told him I was taking 50mg Iodoral. He inspected my thyroid, as it is no

longer a goiter and then looked at my scan from Jan 2009. He told me that my

3cm nodule has gone!

He asked me how much longer I was considering taking Iodoral and I told him that

I wanted to continue for another 3 months. He then asked me a favour. He wants

me to come off of iodine for 6 weeks so he can study me. He wants me to have

another scan with the same doctor who scanned me in Jan (he emphasised that it

needed to be the same doctor) and have blood tests too. He wants to see whether

the Iodoral has cured my goiter.

If I come off Iodoral for 6 weeks do you think there is a chance that my goiter

will start to grow again? After 17 years of having a goiter I really do not

want to go back. Can I stop or do I need to drop my dosage over the week? I

would like to do this especially if I can spread the words " iodine is good for

your thyroid " . I was talking to someone on STTM who had her goiter removed JUST

because it was too big!!! I could not believe it.

[Guest guest]

Hi ,This is so awesome!   I told my doc and she is really interested to know what happens with you, too!   Please keep us posted!Robin F.

On Mon, Apr 27, 2009 at 9:41 AM, elcyd23 <cindychurch@...> wrote:

Hi ,

Today I had my first endo appt after 3 months of Iodoral and I was actually surprised by the French endo. He is due to retire in July but wants me back to see him before then as he is researching iodine. He nearly fell off his chair when I told him I was taking 50mg Iodoral. He inspected my thyroid, as it is no longer a goiter and then looked at my scan from Jan 2009. He told me that my 3cm nodule has gone!

He asked me how much longer I was considering taking Iodoral and I told him that I wanted to continue for another 3 months. He then asked me a favour. He wants me to come off of iodine for 6 weeks so he can study me. He wants me to have another scan with the same doctor who scanned me in Jan (he emphasised that it needed to be the same doctor) and have blood tests too. He wants to see whether the Iodoral has cured my goiter.

If I come off Iodoral for 6 weeks do you think there is a chance that my goiter will start to grow again? After 17 years of having a goiter I really do not want to go back. Can I stop or do I need to drop my dosage over the week? I would like to do this especially if I can spread the words " iodine is good for your thyroid " . I was talking to someone on STTM who had her goiter removed JUST because it was too big!!! I could not believe it.

[Guest guest]

Hi Robin,

Yes it is fantastic! I am so happy I found as in January I was really

feeling the lowest I have felt and fearing the worse for my thyroid. My next

endo appointment is on 6th July so I will go off my iodine in mid May and load

up on Vit A, Zinc, Dandelion and liver cleanse as my blood results have come

back with a conversion issue and as I am not on any thyroid meds at present, the

only thing which is making me feel so good is the iodine and supps.

In the meantime, I am going to send Dr Brownstein's Iodine book to my endo so

hopefully he will have more of an insight on why I went down the iodine route.

Fingers crossed I can sort this out naturally and that my goiter does not come

back and that my energy levels don't hit the floor again :-)

>

> >

> >

> > Hi ,

> >

> > Today I had my first endo appt after 3 months of Iodoral and I was actually

> > surprised by the French endo. He is due to retire in July but wants me back

> > to see him before then as he is researching iodine. He nearly fell off his

> > chair when I told him I was taking 50mg Iodoral. He inspected my thyroid, as

> > it is no longer a goiter and then looked at my scan from Jan 2009. He

> > told me that my 3cm nodule has gone!

> >

> > He asked me how much longer I was considering taking Iodoral and I told him

> > that I wanted to continue for another 3 months. He then asked me a favour.

> > He wants me to come off of iodine for 6 weeks so he can study me. He wants

> > me to have another scan with the same doctor who scanned me in Jan (he

> > emphasised that it needed to be the same doctor) and have blood tests too.

> > He wants to see whether the Iodoral has cured my goiter.

> >

> > If I come off Iodoral for 6 weeks do you think there is a chance that my

> > goiter will start to grow again? After 17 years of having a goiter I really

> > do not want to go back. Can I stop or do I need to drop my dosage over the

> > week? I would like to do this especially if I can spread the words " iodine

> > is good for your thyroid " . I was talking to someone on STTM who had her

> > goiter removed JUST because it was too big!!! I could not believe it.

> >

> >

> >

> >

> >

>

[Guest guest]

Honestly I don't think I would go off my iodine for that purpose. You are hurting your body with ups and downs as you try to heal. I understand how you would like to help this doctor to "get it" but it will be at the expense of your own well being and I personally would not trade that. He would be better of to try it on others and see how they do on it. There is a chance it will grow after 6 weeks but I doubt it would be anything drastic unless you are consuming goitrogenic foods and toxic halides.

Endo Visit

Hi ,Today I had my first endo appt after 3 months of Iodoral and I was actually surprised by the French endo. He is due to retire in July but wants me back to see him before then as he is researching iodine. He nearly fell off his chair when I told him I was taking 50mg Iodoral. He inspected my thyroid, as it is no longer a goiter and then looked at my scan from Jan 2009. He told me that my 3cm nodule has gone! He asked me how much longer I was considering taking Iodoral and I told him that I wanted to continue for another 3 months. He then asked me a favour. He wants me to come off of iodine for 6 weeks so he can study me. He wants me to have another scan with the same doctor who scanned me in Jan (he emphasised that it needed to be the same doctor) and have blood tests too. He wants to see whether the Iodoral has cured my goiter.If I come off Iodoral for 6 weeks do you think there is a chance that my goiter will start to grow again? After 17 years of having a goiter I really do not want to go back. Can I stop or do I need to drop my dosage over the week? I would like to do this especially if I can spread the words "iodine is good for your thyroid". I was talking to someone on STTM who had her goiter removed JUST because it was too big!!! I could not believe it.

[Guest guest]

Why are you going off your iodine? Is it to prove something to the doctor? I wouldn't do this. Not only your thyroid needs iodine but it is protective from cancer and other things for every gland and mucosal lining in your body.

Re: Endo Visit

Hi Robin,Yes it is fantastic! I am so happy I found as in January I was really feeling the lowest I have felt and fearing the worse for my thyroid. My next endo appointment is on 6th July so I will go off my iodine in mid May and load up on Vit A, Zinc, Dandelion and liver cleanse as my blood results have come back with a conversion issue and as I am not on any thyroid meds at present, the only thing which is making me feel so good is the iodine and supps.In the meantime, I am going to send Dr Brownstein's Iodine book to my endo so hopefully he will have more of an insight on why I went down the iodine route.Fingers crossed I can sort this out naturally and that my goiter does not come back and that my energy levels don't hit the floor again :-)> > >> >> > Hi ,> >> > Today I had my first endo appt after 3 months of Iodoral and I was actually> > surprised by the French endo. He is due to retire in July but wants me back> > to see him before then as he is researching iodine. He nearly fell off his> > chair when I told him I was taking 50mg Iodoral. He inspected my thyroid, as> > it is no longer a goiter and then looked at my scan from Jan 2009. He> > told me that my 3cm nodule has gone!> >> > He asked me how much longer I was considering taking Iodoral and I told him> > that I wanted to continue for another 3 months. He then asked me a favour.> > He wants me to come off of iodine for 6 weeks so he can study me. He wants> > me to have another scan with the same doctor who scanned me in Jan (he> > emphasised that it needed to be the same doctor) and have blood tests too.> > He wants to see whether the Iodoral has cured my goiter.> >> > If I come off Iodoral for 6 weeks do you think there is a chance that my> > goiter will start to grow again? After 17 years of having a goiter I really> > do not want to go back. Can I stop or do I need to drop my dosage over the> > week? I would like to do this especially if I can spread the words "iodine> > is good for your thyroid". I was talking to someone on STTM who had her> > goiter removed JUST because it was too big!!! I could not believe it.> >> > > >> > > >>

[Guest guest]

HI, 

 

I agree most hardily with this from  because of some experiences of my own.  We have to be careful and take care of ourselves when we get in a compromised position.  Now I do not let anyone else's opinion like this affect me.

 

Carole

On Wed, Apr 29, 2009 at 7:27 AM, ladybugsandbees <ladybugsandbees@...> wrote:

Honestly I don't think I would go off my iodine for that purpose.  You are hurting your body with ups and downs as you try to heal.  I understand how you would like to help this doctor to " get it " but it will be at the expense of your own well being and I personally would not trade that.  He would be better of to try it on others and see how they do on it.  There is a chance it will grow after 6 weeks but I doubt it would be anything drastic unless you are consuming goitrogenic foods and toxic halides.

 

 

 

Endo Visit

Hi ,Today I had my first endo appt after 3 months of Iodoral and I was actually surprised by the French endo. He is due to retire in July but wants me back to see him before then as he is researching iodine. He nearly fell off his chair when I told him I was taking 50mg Iodoral. He inspected my thyroid, as it is no longer a goiter and then looked at my scan from Jan 2009. He told me that my 3cm nodule has gone!

He asked me how much longer I was considering taking Iodoral and I told him that I wanted to continue for another 3 months. He then asked me a favour. He wants me to come off of iodine for 6 weeks so he can study me. He wants me to have another scan with the same doctor who scanned me in Jan (he emphasised that it needed to be the same doctor) and have blood tests too. He wants to see whether the Iodoral has cured my goiter.

If I come off Iodoral for 6 weeks do you think there is a chance that my goiter will start to grow again? After 17 years of having a goiter I really do not want to go back. Can I stop or do I need to drop my dosage over the week? I would like to do this especially if I can spread the words " iodine is good for your thyroid " . I was talking to someone on STTM who had her goiter removed JUST because it was too big!!! I could not believe it.

[Guest guest]

Hello Ada

Any endocrinologist would want to do his own tests when seeing a

patient for the first time so I am not surprised that he ordered a battery of

tests. Don't worry about him drawing blood to check your antibody level after you

had been given an injection of Synacthen. This will make no difference in

showing the level of antibodies that you have. You are probably more concerned

because you are paying for these tests and I can understand that. Wait and see

what the results are and take it from there. Give the guy a chance Ada, he

sounds an excellent endo. and is already showing that he is doing all the tests

he can to help find the cause of your problems.

However, I would query his lack of concern regarding your

ferritin level. Be assured that a ferritin level of 6 out of such a massive

reference range is very worrying. Your test result should be between 70 and 90

for you to feel normal and you need some form of elemental iron supplementation

such as 200mgs Ferrous Sulphate 3 times daily with food, and with high doses of

vitamin C (5/6000mgs) daily to help the iron absorption. Being " slightly

anaemic " can cause some serious problems if it is not treated now. Read

the following http://www.drbriffa.com/2007/08/31/the-link-between-low-iron-levels-and-fatigue-and-why-this-diagnosis-is-often-missed

If the thyroid original thyroid antibodies test went missing,

then does the laboratory keep copies do you know?

Luv - Sheila

However, he only took ONE vile of blood before he pumped me full of ACTH. When

I asked him if the sample he took was for both the short synacthen baseline

test AND the thyroid antibody test - he said yes. But 30 minutes after I'd been

injected, he then took 2 viles of blood in bottles with different coloured tops

.. Yes definately one blood sample to check where my blood cortisol levels were

after 30minutes - but why the other sample?? I have a very nagging feeling that

the other vile of blood he took was going to be used to test the thyroid

antibodies.

BUT what I need to know is: will the thyroid anti-body test be altered in way

by the synthetic ACTH which was injected into men BEFORE he took the blood for

the thyroid anti-body test??? What if it alters the anti-body test results??

Am I paranoid?? I just want to get well and don't want to pay money for tests

that vanish into thin air or tests administered in the wrong way or

inappropriately. It all just struck me as a bit wrong really given that I am

paying for it.

[Guest guest]

Hi Sheila,

Thanks for the reassurance!!! So maybe I am being a bit paranoid. If synacthen

doesn't affect the antibody test then thats fine with me.

Actually sheila, i think you know this endo well!!!

ada

Give the guy a chance Ada, he sounds an excellent endo. and is already showing

that he is

> doing all the tests he can to help find the cause of your problems.

>

[Guest guest]

However, he only took ONE vile of blood before he pumped me full of ACTH. When Iasked him if the sample he took was for both the short synacthen baseline testAND the thyroid antibody test - he said yes. But 30 minutes after I'd beeninjected, he then took 2 viles of blood in bottles with different coloured tops

.. Yes definately one blood sample to check where my blood cortisol levels wereafter 30minutes - but why the other sample?? I have a very nagging feeling thatthe other vile of blood he took was going to be used to test the thyroidantibodies.

BUT what I need to know is: will the thyroid anti-body test be altered in way bythe synthetic ACTH which was injected into men BEFORE he took the blood for thethyroid anti-body test??? What if it alters the anti-body test results??

Hello Ada,

An interesting question (and no, you are not paranoid!) … I don't know the answer, but I am trying to figure it out….

Logically I see no reason why the first baseline sample should not have been used for both, baseline cortisol and autoantibodies. Surely there would have been enough blood to do both – but whether it has been done, is another question.

I too would have been baffled by them taking two blood samples after 30 minutes, so I looked up the procedure…

http://www.dundee.ac.uk/medther/tayendoweb/images/short%20synacthen%20test.pdf

Procedure:

Synacthen is administer ed 250 micrograms i.m and cortisol measured at 0, 30, 60

minutes. When used to asses the ACTH reserve, only the 0 and 30 min values are

required.The dose may also be given iv with equally identical results. Blood taken for

ACTH and cortisol at 0 min, and cortisol at 30, 60 minutes.

Cortisol: clotted (gold topped tube).

ACTH: EDTA tube on ice and sent to lab immediately

[i am not a lab technician, so I hope I have figured the following out correctly… EDTA tubes are lavender or pink topped tubes for collecting whole blood (as opposed to tubes used to collect blood that gets spun for extracting serum)]

http://www.bd.com/vacutainer/products/venous/ordering_info_tubes.asp#hema_edta_plastic

A Synacthen test can be used for a spectrum of diagnoses – the resulting figures can diagnose primary 's or secondary 's as well as adrenal tumours and to measure the hormone response to the stress of a low sugar level (ITT = insulin tolerance test, which can be a problem associated with pituitary malfunctioning) or Cushing's disease.

No doubt, you are well aware that your Genova adrenal lab results were disastrous, and your serum blood cortisol level with 149 (ref 240-618) was equally extremely low, and gives reason to suspect severe adrenal insufficiency – but within the adrenal insufficiency spectrum there are various possibilities (your low base cortisol levels could be adrenal or pituitary induced) and my guess would be that they had collected blood in two tubes to check for both – your adrenals ability of producing cortisol when stimulated and to check your ACTH levels. Do you remember by any chance the colour tops of those two tubes? Were gold and lavender ??

If you carefully read through the above website about the Synacthen test, you will be able to work out from your results the interpretation and/or if your problem might be adrenal or pituitary. No doubt your endo will explain it in detail to you, but knowing a little about the interpretation beforehand helps you to understand what he might be talking about on the day.

Let's wait and see what the results come up with. I would not worry unduly about the autoantibody scenario (you know you have got them), but I would ask the doctor directly about them taking 2 vials of blood after 30 minutes and what it was for. You pay for it all, so you have a right to know exactly what is going on. If you ask the endo directly if the AA's had been taken from the second sample and if that might have any influence on the result, I am sure he would tell you the truth. If, however, the AA results do not turn up one way or another, make sure you won't have to pay for that test. When I say not to worry about the AA's, I mean that you already know that you have got plenty (the actual number is of secondary importance) – the Genova test proved that loud and clear and there is also not a shadow of a doubt that you are hypothyroid either and need treatment – but before commencing on ANY thyroid treatment, your adrenal (or pituitary) function first needs to be assessed and treated. Do NOT start any thyroid medication until your adrenals are sufficiently supported – it could be very dangerous … - but I am sure Dr.Peatfield will have told you that already.

I agree the circumstances surrounding your appointment with this endo and the lab losing your blood were not the best start. But don't let that cloud your judgment of this endo. I don't know who he is, but he has taken your results seriously and so far done everything by the book – let's hope he will draw the right conclusions from your results. I would be very interested to see your figures from the Synacthen test - please post them here when you've got them. When you get those results, please make a point of telling your endo that you are very unhappy with a Ferritin level of 6…. This is not "slightly anaemic" in my book. You need a Ferritin level of about 90, so you will need to take some Iron supplement. Perhaps you can persuade your endo to ask your GP (so that you won't have to pay for that as well !!) for a repeat test of Ferritin and in addition B12, D3, Folate, Magnesium, Zinc and Copper…. all extremely important parameters. If you were low in any of those, thyroid hormones will not get into your cells.

And in case you were wondering about your high looking FT3 result with Genova ….since you have positive Thyroglobulin and TPO autoantibodies this result might be an artificially high reading caused by the AA's. It is unlikely that your FT3 should be `normal' when your FT4 is low and your TSH high – that does not add up.

Please keep us all posted about your results – I am very curious what they might be…

With very best wishes,

[Guest guest]

Hi again, Ada,

I just read through the Synacthen procedure again – forget my assumption about the second blood sample being for ACTH measurement….

It says…

Blood taken for ACTH and cortisol at 0 min, and cortisol at 30, 60 minutes.

…. So if they had measured both ACTH and cortisol, they would have taken two different samples before the injection of ACTH… makes sense, when you think about it… sorry to have inadvertently misled you. And in that case you are probably right about the second sample being for the autoantibodies…. but it most likely won't have affected the accuracy.

[Guest guest]

Ideally if the test was done properly, it should be done in the morning and a

baseline ACTH should be taken as well (with the first blood draw not the

second).

As this NHS site says - it's better to have the synacthen test done in the

morning:

http://www.dundee.ac.uk/medther/tayendoweb/images/short_synacthen_test.htm

In reality this stuff never seems to happen, so tests get done at all times of

day and the ACTH doesn't get taken. The ACTH is useful to know whether your

pituitary is stimulating your adrenals or not.

If you're unhappy with the results - then ask for one on the NHS. You serum

cortisol is definitely low enough to be followed up by your GP with a referral.

You don't need to worry about the thyroid antibodies being affected by the

injection - that part of the test should be fine.

[Guest guest]

Hi Ada,

What ARE the actual results of your Synacthen Test?

By the way I think he is completely & utterly WRONG in saying is OK to do at 2pm

in the afternoon!

Why was ONLY one post injection sample done at 30mins?

Should have had a 60mins one as well?

WHEN the Test is done at correct time (EARLY am AND fasting) then having Plasma

ACTH tested before injection together with preinjection Cortisol level can help

determine if have Primary or Secondary Adrenal problem.

Personally I would SERIOUSLY rethink starting ANY Thyroid meds with your Saliva

Cortisol DEFICIENT at all 4 points PLUS very deficient am Serum Cortisol?

Lethal Lee

So fastforward 2 weeks and I now have the results of my follow up tests. The

short synacthen test for Addisions and the thyroid anti-bodies for the test the

went missing originally.

> Anyway, Dr. RMP, the endo I'm seeing stated in his results letter " Your short

synacthen test which looks at adrenal function shows that you have completely

normal ability to make the hormone cortisol. This is reassuring "

> But I find nothing reassuring about having a blood cortisol level of 149 (ref

240-618). *YIKES!!!

> At my last appointment, the Doc said in passing (before the negative s

result) that it would be bad to have low cortisol/adrenal issues and take

thyroxine - but now suggests this as the way to go. I know from the advice in

this forum and the 'Stop the thyroid madness' site that this is a very BAD!

idea!! What to do??