Re: Anyone know anything about urine tests and adrenals?

[Guest guest]

Hello Lynn,

I am so sorry that you have been left stranded with all those results and not a proper explanation from your doctor....

Your results are a bit too much for me to take in at the moment (am down with (possible) swine flu - can't think straight), but at a glance it looks too me like your body has a problem with balancing the fluids in your body.... you are wee-ing out too much salt, and you seem to be weeing too much volume in general .... and both of those factors might be the culprit for your tremors and shakes and salt cravings. - The array of medication you have been prescribed confuses me....

How qualified is your doctor? Can you trust him/her ? Were you not asked to stop all steroids before doing any of those tests? - and if not, why not? I can't see much point in measuring your various cortisone/cortisol levels, knowing full well that you are taking steroids of whichever kind. I find this combination of tests and resulting treatment very confusing, and would still do, even if I could think straight right now.

Perhaps Sheila or someone else can make sense of those results, but what stands out for me is the very low a.m. serum cortisol (don't understand the comments from the other list about cortisol being too high either) and the lo-ish sodium (very low in urine, not quite so low in blood test) and the low-ish potassium in the urine test. Yet your aldosterone urine level looks high, which I find odd in view of the fact you are losing so much salt and potassium ... I am not quite sure what to make of this, other than your adrenals are not controlling the electrolytes properly, and that in itself has to be taken very seriously.

If you trust your doctor, then in your shoes I would want to sit down with him/her and go through every single one of those parameters and let the doc explain what means what for YOU - Just saying you may have a possible pituitary problem, take this and take that - and then leave you to figure it all out for yourself, is not on. You deserve better than this. If you do not trust him/her, then I would ask for a referral to a good endo of your choice ASAP (perhaps from Sheila's list?)

Sorry, I can't help, those results are confusing me too.....

all the best,

[Guest guest]

Hello

Thank you so much ! I already feel a little less worried after reading

your comments.

Sorry I confused you with the array of meds, some of them were from blood tests

and nothing to do with this. I am seeing him in Belgium and he has helped a lot

of people so I know he will listen and has a clue. It's just there was so much

to take in at my appointment. I was already on HC for 10 months before doing

these urinary and serum tests.I know some docs beleive they are still valid when

on HC but others do not.

Here are my full bloods:

Haemotology:

HG: 12.1 (12.0-16.0)

Haemocrit 36 (36-46)

RBC 4.5 (4.0-5.2)

MCV 80 (80-95)

MCH 27 (27-32)

WBC 5.38 (3.6-11.0)

Neutrophilis 57.8 (45-70)

Lymphocytes 35.7 (18-49)

Monocytes 5.4 (1-10)

Eosinophilis 0.7 (0-5)

Basophilis 0.4 (0-2)

Vitamin B12 1349 (300 -835)

Folate Erythrocite 658 (140-628)

Ferritin 156 (50-70 op, 18-170 normal)

Renal Function:

Uric acid 5.2 (2.4-5.7)

Urea 21 (10-50)

Creatine 0.59 (0.60-1.10)

Carbohydrate Metabolism:*

Glucose 90 (60-110)

Insulin 17.9 (3-22)

Electrolytes and Trace Minerals:

Sodium 139 (135-145)

Total calcium 10.2 (8.4-10.4)

Ionised calcium: 44.5 (40-52)

Erythrocytised Magnesium 5.48 (4.0-6.0)

Vitamin D 56 (30-60)

Lipid Metabolism**

Triglycerides 48 (30-170)

Total cholesterol 177

HDL: 70 (40-109)

LDL calculated: 97 (0-114)

Cholesterol HDL ratio: 2.53 (2.6-4.44)

Protein Metabolism:

Total protein 7.2 (6.6-8.7)

Ceruloplasmine 31 (25-44)

Inflammation markers:

CRP 0.4 (0-0.49)

MPX 0.6 (-10-10)

HS CRP 0.349 (0-0.05)

Liver Tests:

Gamma-GT 54 (5-36)

Antioxidants:

GPX meas 308

GPX 104 (59-116)

SOD meas 0.96

SOD 793 (569-892)

Protein SH 758 (396-734)

Vitamin E 9.6 (10.0-19.0)

Vitamin E Chol 5.42 (5.4-9.2)

Vitamin A 61 (57-111)

Zinc 110 (84-135)

Copper 145 (86-148)

Homocysteine 5.7 (<8.0 optimal)

Endocrinology:***

TSH 0.02 (0.3-4.5)

T3 Free 6.35 (2.1-4.2)

T4 1.47 (0.7-1.8)

AB to Thymoglobulin 100 (<100)

Anti TPO 139 (<16)

Adrenals:

Cortisol (8hr) 1.0 (7-25)

Transporting 41 (20-50)

Free cortisol 8am 0.4 (10-30)

Sex Hormones:

FSH 4.9 (4-13)

Estradiol 47 (30-150)

Estrone 16 (no range given – weird!)

Progesterone 0.57 (0-1.0)

Testosterone **** 17 (150-400)

Free Testosterone**** 0 (1.9-15)

SHBG 39 (41-79)

Pregnenolone 2.39 ( 3.2-14.0)

Androstanediol-gluc 0.84 (0.1-6.0)

DHEA sulfate 74 (80-480)

IGF-1 284 (123-444)

IGFBP-3 5.82 (1.73-7.48)

IGFBP-3/IGF1 5.41 (0-4.5)

Blood Toxicology:

Load <5.0 (<25)

Cadmium 0.07 (0.-0.4)

Mercury lower than the limit of detection (<0.08)

Nikkel 1.20 (<1.0)

IgE Rast:

IgE 18.7 (20-100)

Specific IgG:

Candida albicans 29.3 (<20)

Therapeutic Monitoring:

CEA <0.05 (0-4)

Other:

Vitamin B1 186 (60.0-120.0)

Vitamin B6 175 (35-110)

Vitamin B2 272 (175-475)

*I wish both insulin and glucose were lower. I have been on metformin for years

and have also eaten low carb for years. So why aren't these lower?

** I am proof that treating the thyroid will reduce e total cholesterol. Before

my thyroid treatment, my total cholesterol was 269. My triglycerides were always

good though.

*** My free T3 is ALWAYS over the range and my Free T4 tends to be low to mid

range. Could this be because of a reverse T3 problem?

****My testosterone has ALWAYS been sky high. Now it is the opposite. What

gives?

Next time I see him he wants me to have bloods for:

Aldostrone

ACTH

Sodium

Potassium

Calcium

I had planned to emial him tomorrow and ask:

Why is my aldostrone so high in urine?

Can I get a renin and aldostrone test done?

Is high cortisol metabolites in urine not a sign of high cortisol?

Why has my testosterone fallen so much?

I feel exhausted and cold like before, can DHEA and pregnonolone be interfering

with my thyroid meds?

With ferritin so high why are my MCv/H so low?

Been taking my BP and it is between 115-129 with diastolic between 70 and 50.

Why is the distolic so low?

Can anyone else think of anything else I should ask?

[Guest guest]

Hi Lynn

I wouldn't worry too much about what they said on the adrenals message board as

they rarely see urine tests over there so I doubt they know that much about how

to interpret them. The doctor's doing a more sophisticated analysis as he's

analysing the results in light of your symptoms and clinical examination for

signs whereas the message board are looking at your numbers in isolation.

In fact in order for your urinary cortisol to be considered high, it would have

to come back over the range (ie. over 100).

I had all those tests done and there were discrepancies for me too (although in

the opposite way to yours as I was not on any meds at the time) as my urine

cortisol test was very low (16) and my blood cortisol was good in the range

(20).

I think a lot of the work they do is based on symptoms and the bloods and urine

just give extra clues about what's going on. Some of it is likely to be trial

and error, ie. do your symptoms improve or get worse when you do x.y.z. thing

but at least you will have a doctor who attends to how you are feeling rather

than working solely with what your bloods are saying.

Also the bloods and urine are just a snapshot in time as hormones fluctuate

greatly throughout the day depending on what you're doing, what stress you're

under, how much sleep you get etc.

I'd email your concerns as that will help you to come to a decision about what

to do.

Lou x

[Guest guest]

Hello Lynn,

Many thanks for typing out all of those extensive blood results - that's a labour of love for sure !

Although you have listed all those results, you have not given much information on how you are feeling most of the time (apart from your salt cravings and dizzy spells) or which kind of medication (Levo or NDT?) you are on for your thyroid, except for saying you have been on HC for at least 10 months.

Since you are seeing a doctor in Belgium, I am assuming that you are under the care of Dr. H. or one of his team and therefore you should be in very good and safe hands. I am also assuming that you must be under the care of a specialist in the UK who has ordered all of those very detailed tests for you - so you are a very lucky bunny if you got all those tests done on NHS.... or a very poor one now, if you had to pay for it all out of your own pocket .... either way, if it is Dr. H. in Belgium who will look after you, there is hope that you will get sorted. I don't know him in person, but I know of his excellent reputation.....

Most of the lab results you have listed are way above my level of understanding. I have no experience in interpreting them, but a few of the more familiar ones intrigue me.... so I'll give you my thoughts on them, but please bear in mind that those are just thoughts and question marks - not answers.

Your haematology readings show an almost (but not quite) anaemic picture. All of the parameters of your red blood cell count are inside the norm - but only just..... There is no infection showing, all the white blood cells look perfectly normal. Your Vit B12, however, is over the top.... - seeing that your folate and ferritin sit comfortably high in the norm range, I wonder.... are you supplementing B12, iron and B-complex? - or more specifically... (assuming you do) .... would your red blood count still be inside the norm, if you did not supplement B12 ?

Your Uric acid shows a tendency to be on the high side, which could have any number of reasons - also your CRP marker is at the top end of the norm. An elevation would indicate some kind of muscle inflammation somewhere - but it does not tell us where. To add to that, you have tested positive for Candida Albicans, which does not help the overall picture ...

Your Gamma GT (liver enzyme) is elevated .... it is possible that this might be a result of you having taken steroids for over 10 months - but not necessarily, since it seems from your adrenal profile that you are rather in dire need of cortisol.... Having said that, I am unclear about the significance - and truthfulness (since you are taking HC) - of your 8 am cortisol reading. It seems to me that someone with such a low cortisol reading can't possibly still be standing....- on the other hand, you are taking HC, so perhaps that is keeping you upright....

I guess what I am trying to say in a roundabout way is that assuming your 8 am cortisol reading were a valid one, that might indicate either primary or secondary 's.

Primary 's would show very low sodium and high potassium in the blood. I do not know how this would compare to a urinary test though... in any case, both, your sodium was extremely low in the urinary test, and your potassium was also low-ish, but still in the ref range - but both parameters were pulling in the same direction, not to opposite ends. For that reason I am assuming that primary 's is not a contender.

Secondary 's, however, is to my mind very much on the cards. Secondary AD occurs when the pituitary gland fails to produce enough ACTH (which stimulates the adrenals to produce cortisol). When the ACTH output is too low, the production of cortisol from the adrenal gland drops. Due to lack of ACTH stimulation the adrenals shrink and slowly stop working. Secondary AD is still a rare condition, but not as rare as Primary AD. I am assuming that your doctor's thoughts were heading in the same direction, and this is why he mentioned that you might be hypopituitary. To my (very limited) graps of things, this (secondary AD due to hypopituitary function) would be at the top of my list for suspected possible diagnoses.

***Next time I see him he wants me to have bloods for:AldostroneACTHSodiumPotassiumCalcium

..... the above request confirms to my mind that your doctor (is this Dr. H. or your UK doc btw ?) wants to look into the possibility of 's. What I am not sure about is how they'll get about of obtaining any true ACTH readings whilst you are on HC. I don't know if there is any other way of measuring the amount of ACTH hormone without performing an ACTH stimulation test (synacthen test). To achieve a valid reading with that you need to be off all steroids for some time. To the best of my knowledge, however, there is one glucocorticoid that will not invalidate an ACTH test, and that is Dexamethasone. Please ask your doctor if you need to be switched over to Dex before they schedule an ACTH test for you, and also ask if you should stop any other steroid hormones you may be taking until after the ACTH test (To my mind it would be wise).

I hope I haven't muddied the waters for you now. All the best, Lynn, and please keep us posted on your progress.

[Guest guest]

Hi Lou

Thank you so much! I felt so stressed and worried after getting info from the

adrenals board, but now I feel a bit better.

The cortisol metabolites were all over the range in the urine, but I have since

read that testing cortisol when on HC always leads to strange results.

I emailed him this today:

" Dear Dr. H

When I saw you I was quite stressed after taking the wrong train etc. So, there

was a lot of information and I did not take it all in. Since I have come back

home however, I have been looking more closely at my urine and bloods and am

pretty worried. So, can you answer these questions? If you do not have time, I

could phone instead.

1. Why was my aldostrone so high in urine? – My reading tells me that high

aldostrone could be caused by Conn's Syndrome, Kidney disease, liver disease and

other lovely ailments. So, I am worried about this, especially since my liver

enzymes were elevated. There is also the possibility of me urinating out my

aldostrone. In this case it would be low in serum, but this was not tested.

2. My symptoms match low aldostrone but it was EXTREMELY high in urine. Does

that mean I am excreting it?

3. Are high cortisol metabolites in urine a sign of high cortisol? All mine were

over the range. I realise there is a large body of thought that says cortisol

and its metabolites should be disregarded when one is on steroids.

4. Why has my testosterone fallen so much? Last time I had it tested (07/07/08)

my free testosterone was 6.9 (1.0-4.0).

5.I currently feel exhausted and cold like before thyroid treatment, can DHEA

and pregnonolone be interfering with my thyroid meds? I am already on a high

dose of thyroid (300mg). I will be investigating Reverse T3 next. I know you do

not really believe in it, but if my reverse T3 is high, I would like to work

with a co-operative doctor.

6.With ferritin so high why are my MCV/H so low?

7.I have been taking my BP and it is between 115-129/ 70-50. I realise my

diastolic gets very low. Is the low diastolic a problem? My heart rate has been

between 80 and 95. Too high.

Regards,

Lynn "

[Guest guest]

Hello

Tis okay: I had already spent like 1.5 hours typing them out somewhere else, so

I only had to copy and paste.

I live in Southern Ireland and so am not under the NHS or living in the UK.

Up until very recently (last week), I felt good. I had the dizziness when

standing, the salt cravings and that, but my thyroid symptoms of being cold all

the time, feeling exhausted and gaining weight/inability to lose were all gone.

I was diagnosed with a thyroid problem in December of 2008 and Hashimotos

specifically in March of 2009. I have been on desiccated thyroid since January

and got to my optimal dose of 4.25 grains in August. I felt great, was losing

weight, weight did not pile on easily and was no longer cold ALL THE TIME (the

type of cold that never goes away no matter how many layers you wear). In late

October the feeling cold thing came back again, so I raised my thyroid to 5

grains.

I got my period on Monday of this week and flew back from seeing Dr. H on

Tuesday. Since Wednesday of this week I have been feeling the horrible cold

again and am also exhausted. However, I don't have any cold or flu symptoms. And

I really don't think rising again would be good. I am thinking of testing my

reverse T3 next and am trying to research where I could actually get blood

drawn, as there are no private hospitals in Ireland.

I am seeing Dr. H in Belgium yep. Dr. H ordered all the tests. I have not seen

any specialist in Ireland. I did see/waste my money on one GP here who

specialised in " unexplained illnesses " but he charged a fortune for his services

and since he was not an endo he couldn't even order the tests I did need.

I am a poor one after spending 1000 Euros on meds on Tuesday, 300 to see him and

flights etc. Then add the money I wasted on the doctor here and yeah....

Could my low HG, MCV, MCH be because I was having my period (sorry if TMI, but

during the heavy bleeding part) and in a lot of pain? Plus, I was sleep deprived

when these bloods were taken.

I am supping B12 yep and B complex yep but stopped for 10 days before the test

as was told to do so. I stopped taking iron about six months ago.

I was diagnosed with coeliac disease via enterolab in July so I assume my body

is healing from that and that could explain the high CRP number?

I am only under the care of Dr. H. My GP is useless so I only see Dr. H for this

stuff.

I was on 30HC when I had these bloods and had taken my morning 15mg dose.

How do I test for secondary 's? He said he was only putting me in for an

ACTH test, not a STIM test. I was thinking myself that I need a STIM test.

Thank you SO much! You have both given me hope!

Lynn

[Guest guest]

Hi Lynn, Armour changed its formula this year and many of us became very Hypo

again after years of stability. The new armour was hard and didnt have the

'smell'. The 'old' armour was soft and smelly.

Dont know if that was a contributor or not. There was alot of discussion about

it on the forum. I mention this in case you were not aware of the change of

formula

F

>

> Hello

>

> Tis okay: I had already spent like 1.5 hours typing them out somewhere else,

so I only had to copy and paste.

>

> I live in Southern Ireland and so am not under the NHS or living in the UK.

>

> Up until very recently (last week), I felt good. I had the dizziness when

standing, the salt cravings and that, but my thyroid symptoms of being cold all

the time, feeling exhausted and gaining weight/inability to lose were all gone.

>

> I was diagnosed with a thyroid problem in December of 2008 and Hashimotos

specifically in March of 2009. I have been on desiccated thyroid since January

and got to my optimal dose of 4.25 grains in August. I felt great, was losing

weight, weight did not pile on easily and was no longer cold ALL THE TIME (the

type of cold that never goes away no matter how many layers you wear). In late

October the feeling cold thing came back again, so I raised my thyroid to 5

grains.

>

> I got my period on Monday of this week and flew back from seeing Dr. H on

Tuesday. Since Wednesday of this week I have been feeling the horrible cold

again and am also exhausted. However, I don't have any cold or flu symptoms. And

I really don't think rising again would be good. I am thinking of testing my

reverse T3 next and am trying to research where I could actually get blood

drawn, as there are no private hospitals in Ireland.

>

> I am seeing Dr. H in Belgium yep. Dr. H ordered all the tests. I have not seen

any specialist in Ireland. I did see/waste my money on one GP here who

specialised in " unexplained illnesses " but he charged a fortune for his services

and since he was not an endo he couldn't even order the tests I did need.

>

> I am a poor one after spending 1000 Euros on meds on Tuesday, 300 to see him

and flights etc. Then add the money I wasted on the doctor here and yeah....

>

> Could my low HG, MCV, MCH be because I was having my period (sorry if TMI, but

during the heavy bleeding part) and in a lot of pain? Plus, I was sleep deprived

when these bloods were taken.

>

> I am supping B12 yep and B complex yep but stopped for 10 days before the test

as was told to do so. I stopped taking iron about six months ago.

>

> I was diagnosed with coeliac disease via enterolab in July so I assume my body

is healing from that and that could explain the high CRP number?

>

> I am only under the care of Dr. H. My GP is useless so I only see Dr. H for

this stuff.

>

> I was on 30HC when I had these bloods and had taken my morning 15mg dose.

>

> How do I test for secondary 's? He said he was only putting me in for

an ACTH test, not a STIM test. I was thinking myself that I need a STIM test.

>

> Thank you SO much! You have both given me hope!

>

> Lynn

>

[Guest guest]

Hi

No,I have used thiroyd/old armour and now erfa. I have never used the new armour

Thank God.

Lynn

[Guest guest]

Hi Lynn,

Many thanks for your reply - it helps giving us all a better picture, knowing a bit of background detail....

I fully understand your reluctance to see any other doctor but Dr. H. about your condition, but to look a little on the practical side.... not that I know anything about the health insurance system in Southern Ireland, but presumably there must be some public organization akin to the NHS, and perhaps if you look around a bit, will be able to find a doctor who is willing to work with Dr. H. and can at least order those expensive blood tests for you? .... or do you reckon personal egos will get in the way (( ? In my view it would be worth a try - Sodium , Potassium and Calcium won't cost the earth, but Aldosterone and ACTH - done privately - might. One of our members had been sending me the site of a private lab here in the UK, and they wanted ~ £ 170 just for Aldosterone alone.... I guess a private ACTH blood test won't be much cheaper .... so at a guess you might be in for another 500 Euros for those tests altogether - on the other hand, you can't put a $$ sign on our health ..... but it's a shame having to fork out this kind of money just to get the care we should be entitled to get on our health insurances.

***Could my low HG, MCV, MCH be because I was having my period (sorry if TMI, butduring the heavy bleeding part) and in a lot of pain? Plus, I was sleep deprivedwhen these bloods were taken.

IMHO - yes... that is plausible.

***I was diagnosed with coeliac disease via enterolab in July so I assume my bodyis healing from that and that could explain the high CRP number?

Again - yes, that is a possibility.

***How do I test for secondary 's? He said he was only putting me in for anACTH test, not a STIM test. I was thinking myself that I need a STIM test.

Actually, I wasn't sure about that one - so I looked it up on an extremely useful site, which Sheila had provided some time ago....

http://labtestsonline.org/understanding/analytes/acth/glance.html

You can check up on just about every test there is from this site - so worth keeping the website safe in your files.....

It should come up with the ACTH page when you click, but if not, just type "ACTH" in the "tests-box" at the top, and it should come up. If you read through all of the follow ups (click "next") it will tell you all there is to know about the ACTH blood test.... which, as I understand from this info, seems to exist. I am only familiar with the ACTH stim test, so that was news for me too.

I would still email Dr. H. and ask him if you need to stop your HC (and/or any other steroids) at any time before an ACTH blood test. I don't know if it needs stopping, but I just can't picture it in my mind if and how any conclusions can be drawn from the results when you are taking HC. - I would ask the same question for the aldosterone test, as this is also a hormonal measurement. - At least Dr. H. will be able to assure you on those points.... better safe than sorry.

***How do I test for secondary 's? He said he was only putting me in for anACTH test, not a STIM test. I was thinking myself that I need a STIM test.

Secondary AD can develop for different reasons, and the only 100% reliable diagnostic test I know of is an ACTH stim test.... but, as I said, to get a true reading from this test, you would need to be off steroids until it's all out of your system. Dex apparently can be given if absolutely necessary, but you'd get a clearer picture without any steroid involvement, as I understand it.

However - this stim test is designed to diagnose both, primary or secondary 's, and perhaps secondary AD can be diagnosed by different means... I am not sure. Secondary AD could have several causes. The most common cause is a benign tumour near the pituitary gland. It is apparently nearly always benign, although there is a small risk of malignancy. Off the top of my head ... other causes include autoimmune destruction of the adrenal glands and adrenal tumours.

I would expect that - should secondary 's be diagnosed from the blood results - the next step might be a scan of the pituitary gland to see if there could be a tumour.....

Whatever it may be in your case, I am confident that Dr. H. will get to the bottom of it and make you well again.

With very best wishes,

[Guest guest]

Oh and forgot to say he is also testing my parathyroid function. He did keep

asking had I ever had it tested.

[Guest guest]

Hi Lynn, Heavy periods are a classic hypo symptom- if you suffer from this then iron levels need to be watched too as low iron symptoms are similar to hypo ones. Mine got so bad that a hysterectomy was the only solution offered. As you need a high dose of Armour you may do better replacing some of it with T3- this is what Dr. P suggested to me- it got rid of the aches and pains in my joints too and gave me more warmth and energy- this is also a way to circumvent RT3. > Subject: Re: Anyone know anything about urine tests and adrenals?> > Hello> > I was diagnosed with a thyroid problem in December of 2008 and Hashimotos specifically in March of 2009. I have been on desiccated thyroid since January and got to my optimal dose of 4.25 grains in August. I felt great, was losing weight, weight did not pile on easily and was no longer cold ALL THE TIME (the type of cold that never goes away no matter how many layers you wear). In late October the feeling cold thing came back again, so I raised my thyroid to 5 grains. > > I got my period on Monday of this week and flew back from seeing Dr. H on Tuesday. Since Wednesday of this week I have been feeling the horrible cold again and am also exhausted.> . > > > > Lynn> > > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hello Lynn,

***I am scared to ask my GP to do the sodium, calcium and all that, or refer me toan endo as she FREKAED out and said she was very angry when she heard I had beenput on HC in the first place. So, now I feel like I can't go to her with any ofthis stuff. I also feel scared of asking her to refer me to an endo who would dothose tests. Why can't docs just be nice to us and just order the tests we askfor? We are PAYING them after all!

I fully appreciate your predicament, Lynn - but in my view it is vital that you find a solution. You can't go through life being scared of your GP and you need a doctor near-by to provide health care for you ....

Being afraid of your GP puts you into an impossible situation, particularly in view of you *possibly* suffering from adrenal insufficiency (which is another word for 's disease), for which you would need a lot of help.

Is this particular GP the only one you can go to? Isn't there anybody else around you could change to ?.... If not, I would strongly recommend for you to ask someone (a partner or close friend) to accompany you to see this GP and to put a few facts of life on the table.

By far the easiest way (for you) would be to ask Dr. H. to email or fax a preliminary report to your GP, so that at the least your GP will take your worries seriously and won't "tell you off" for taking HC. If a diagnosis of adrenal insufficiency were confirmed, then even your GP would appreciate that this treatment is needed to keep you alive - Do you think Dr. H. would be prepared to do that for you? It would really help you to have some professional backing.

Btw - what about the doctor who put you on HC in the first place all those months ago? - Can't you go back to him/her?

***I wanted to order some of these tests myself, but there isn't even anywhere inIreland where I can get someone to draw the bloods for a private lab.

Surely, that must be possible to organize. - Where would a blood draw normally take place? Have you gone there in person and asked one of the nurses if they would do a blood draw for a private test if you provided the kit and the instructions? Most phlebotomists would agree to that and charge you a little fee for the privilege.

***It still seems to me that the ACTH and the ACTH STIM test would both be skewedand inaccurate if I stay on Medrol or HC. But, and here's the horrible bit: inorder to get accurate testing, I would have to be off HC/Medrol for two weeksand consequently would have to be off thyroid. I could not tolerate even 1/2grain of thyroid without HC. So, I would have to feel awful and probably gainweight. Ugh!At the appointment, he said not to take my HC/Medrol in the morning of the ACTHtest, but he said it was not an ACTH STIM test.

Hang on a minute.... so Dr. H. did instruct you not to take your HC on the morning of the blood draw... - so that is clear then. If Dr. H. says all you need to do for this particular test is to stop your HC on the day until after the blood draw, then this is all you need to know and do.... sorted

I hear what you are saying though - loud and clear.... and you are right. You would crash if you took your thyroid meds on top of unsupported adrenal function. Your adrenals are not working - for whatever reason - and adrenal treatment has priority before any thyroid treatment.

***I don't know what to do now. Be miserable and gain weight in order to get anaccurate diagnosis or leave it and just take the meds according to hisinstructions.

I don't understand what you mean by that - you do not need to be miserable in order to achieve an accurate diagnosis... you need the right doctor(s) to find what is wrong with you. You have taken the first step in the right direction by becoming Dr. H's. patient. He will be very capable of getting you diagnosed correctly... but, all the tests needed to get to the bottom of what is going on will be costly if you have to pay for it all out of your own pocket. It must be possible to find a doctor in Ireland who is willing to work with you and Dr. H. - they can't all be useless. But if need be and you have to deal with your current GP, my best advice is to stand up to her (you might need moral support from a partner or good friend to come in with you) and jolt her into action by letting her know that there is reason to believe you might be suffering from secondary 's disease and would she please refer you to an endo of your choice - or would she want it on her conscience to have denied you help? - that should do the trick.... You'll be surprised how effective it can be when you stand up to be counted.

***I just really would like to know whether I can get off HC/Medrol sometime, asevery time I have tried to wean it has not been possible, due to gettingpalpitations, skin crawling sensations etc. I need HC to tolerate thyroid and mythyroid problem have at least been confirmed by antibodies tests.

Whether or not you can ever get off HC will depend on the diagnosis Dr. H. will come to. For now it would be very foolish to even try.

***Oh and forgot to say he is also testing my parathyroid function. He did keepasking had I ever had it tested.

Yes, that all makes sense and ties in with the investigation into hypopituitary territory.... but I can't help thinking about the cost. Please forgive me for banging on about it - I know, it's none of my business, and if you have got the means to finance all those test, then there is no problem. All of the tests that Dr. H. suggests are sensible and necessary in order to diagnose you properly, but they are also expensive - and a local endo could and should order them for you on your health insurance, - but, of course, it would need a little co-operation from a local endo with Dr. H., and since many doctors are ego driven, that could prove a little problematic. But hopefully not all are putting their own ego before a patient's health.

Best wishes,

[Guest guest]

Hi Lynn,

It is a pre-requisite that you or your doctor know what is your adrenal status

prior to giving thyroid hormones like L-T4 (Synthroid/Levothroid/generics) on

their own.

The potential for disaster on just L-T4 is very clear from that particular

instruction in the PIL.

My DW was put through that hoop a couple of decades back...and may have been the

case that eventually changed the PIL to properly reflect the risks.

If my DW's case wasn't noted and written up, I'd be very surprised indeed, since

it was a teaching hospital that did the follow-up.

best wishes

Bob

>

> Hi

>

> I am scared to ask my GP to do the sodium, calcium and all that, or refer me

to an endo as she FREKAED out and said she was very angry when she heard I had

been put on HC in the first place. So, now I feel like I can't go to her with

any of this stuff. I also feel scared of asking her to refer me to an endo who

would do those tests. Why can't docs just be nice to us and just order the tests

we ask for? We are PAYING them after all!

>

> I wanted to order some of these tests myself, but there isn't even anywhere in

Ireland where I can get someone to draw the bloods for a private lab.

>

> I am glad to hear that my period could make a difference to my iron levels. We

all know that menstruating women are the ones most at risk of anaemia. I think

this is highly likely. I just found out this evening that testing during the

period is not advisable apparently, unless periods are light.

>

> It still seems to me that the ACTH and the ACTH STIM test would both be skewed

and inaccurate if I stay on Medrol or HC. But, and here's the horrible bit: in

order to get accurate testing, I would have to be off HC/Medrol for two weeks

and consequently would have to be off thyroid. I could not tolerate even 1/2

grain of thyroid without HC. So, I would have to feel awful and probably gain

weight. Ugh!

>

> At the appointment, he said not to take my HC/Medrol in the morning of the

ACTH test, but he said it was not an ACTH STIM test.

>

> I don't know what to do now. Be miserable and gain weight in order to get an

accurate diagnosis or leave it and just take the meds according to his

instructions.

>

> I just really would like to know whether I can get off HC/Medrol sometime, as

every time I have tried to wean it has not been possible, due to getting

palpitations, skin crawling sensations etc. I need HC to tolerate thyroid and my

thyroid problem have at least been confirmed by antibodies tests.

>

> I can't live without thyroid, but in order to take it I need HC.

>

> The ultimate catch 22.

>

[Guest guest]

You should NOT be afraid of your doctor, they are there to try

to help you regain your normal health in whatever way is possible. As you are

so frightened of her, I would write her a letter so she has time to take it all

in before your next visit. I would be very blunt and tell her that I am writing

to her rather than talking to her face to face because she upsets me greatly

when I do this, and I need help and support and am unhappy with her attitude

towards me. I would ask her WHY she was so angry when she found I was taking HC

- especially as I had all the symptoms of low adrenal reserve and

especially as I am aware that the ASTH STIM test is done to check to see

whether the patient has 's disease (too little or no cortisol) or

Cushing's Syndrome (too high a level of cortisol). I would tell her the tests

do NOT test for low adrenal reserve and that I know my adrenals must be boosted

sufficiently in order to help the thyroid hormone get into the cells.

I would tell her that I am only too aware how badly I am likely

to feel if I have to stop my HC for two weeks, and that I will also not be able

to take any thyroid hormone replacement during that time because it is the HC

that is helping the thyroid hormone absorption and. I would tell her that I

have considered this, and that I am not prepared to do this, simply because the

test she wants will NOT show I am suffering with low adrenal reserve and that

you know she will only turn round and tell her me that I do not have an

adrenal problem and send me away without any prescription for any adrenal

supplements. It would therefore be a waste or her time and my time and would

only serve to make me ill and put my health back where it was before you

started treatment. I would then ask to be referred to a thyroid

specialist of YOUR choice, not hers.

In your letter, list the blood tests you require to see whether

you are low in the reference range for any of them, and let her know you are

asking for these specific tests because should any of them be low, your thyroid

hormone replacement will not be getting properly absorbed into the cells - if

she doesn't know this, then she needs to be taught, and if it is by her

patients, then so be it.

Remember, she is a general practitioner only, she is NOT a

thyroid specialist - and please never allow a doctor or anybody else to intimidate

you.

Send a copy of your letter to the Head of Practice and ask at

the bottom of the letter that it be placed inside your Medical Records.

If you are doing OK on your HC and thyroid, you may well have to

take your health into your own hands, or change to a GP who is willing to work

with you. Your GP has put you in a frightful situation and this must not be

allowed to continue.

To come off your HC/Medrol you really need a good doctor who

understand how they work, and you have to cut down very, very slowly over a

period of time. Until your body is ready for you to do this, you should not

make an attempt to reduce it.

Was there NO private hospital on the list I sent you the other

day that will draw your blood. I simply cannot believe that there is nobody in

Northern Ireland who is willing to draw your blood for testing.

Luv - Sheila

I am scared to ask my GP to do the sodium, calcium and all that, or refer me to

an endo as she FREKAED out and said she was very angry when she heard I had

been put on HC in the first place. So, now I feel like I can't go to her with

any of this stuff. I also feel scared of asking her to refer me to an endo who

would do those tests. Why can't docs just be nice to us and just order the

tests we ask for? We are PAYING them after all!

I wanted to order some of these tests myself, but there isn't even anywhere in

Ireland where I can get someone to draw the bloods for a private lab.

I am glad to hear that my period could make a difference to my iron levels. We

all know that menstruating women are the ones most at risk of anaemia. I think

this is highly likely. I just found out this evening that testing during the

period is not advisable apparently, unless periods are light.

It still seems to me that the ACTH and the ACTH STIM test would both be skewed

and inaccurate if I stay on Medrol or HC. But, and here's the horrible bit: in

order to get accurate testing, I would have to be off HC/Medrol for two weeks

and consequently would have to be off thyroid. I could not tolerate even 1/2

grain of thyroid without HC. So, I would have to feel awful and probably gain

weight. Ugh!

At the appointment, he said not to take my HC/Medrol in the morning of the ACTH

test, but he said it was not an ACTH STIM test.

I don't know what to do now. Be miserable and gain weight in order to get an

accurate diagnosis or leave it and just take the meds according to his

instructions.

I just really would like to know whether I can get off HC/Medrol sometime, as

every time I have tried to wean it has not been possible, due to getting

palpitations, skin crawling sensations etc. I need HC to tolerate thyroid and

my thyroid problem have at least been confirmed by antibodies tests.

I can't live without thyroid, but in order to take it I need HC.

The ultimate catch 22.

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.101/2555 - Release Date: 12/10/09

07:36:00

[Guest guest]

Hi Bob

I had the adrenal saliva test done before going on desiccated thyroid. The

bottom of the range was 21 and I was at a 20. My cortisol only came into range

at night.

I just wish now I had had an ACTH STIM test and other more advanced adrenal

tests done at the same time. My inability to handle even the smallest amount of

thyroid meds without adrenal support shows there is something seriously up with

my adrenals. I have been on HC for about a year now and anything less than 25HC

and I start to get palpitations, skin crawling, extreme anxiety etc.

What is a PIL?

Thank you,

Lynn

[Guest guest]

Hi Sheila -I am one of those non confrontational types. I am really afraid of

anyone who gets mad at me. I know it is bad, but it is the way I am. I have

stood up to doctors before for this type of thing, but I hate every second of

it.

I guess I feel bad that I went to another GP to get my original diagnosis. When

I told her that I had antibodies, she kindof smiled and said nothing as if

humouring me because my TSH was normal.

She thinks I have weaned off my HC by now I am sure, as the endo she sent me to

asked me to wean off them. The endo did not understand adrenal fatigue and was

aggressive and horrible to me so I never went back. It is me who wants the ACTH

STIM test and pituitary tests as I think I may have a pituitary problem or a

specific problem with my adrenals, rather than just normal adrenal fatigue.

What I need is an endo that would put their ego aside long enough to work with

Dr. H and do the tests for me. This way my health insurance would cover them and

they would be MILES cheaper yes. My bf suggested emailing Dr. H and asking him

if he knows of any endos or docs in Ireland whom I could work with.

Regarding the blood tests, I have sent an email to a private nurses agencies and

am working my way through the NI list, though slowly. There really is no way to

walk into a clinic/hospital in Ireland without a doctor's rx for tests. It's

different to the UK in that way. I was writing with someone else online who

ordered test form Genova and he said that he had to get a family friend to do

it.

Thank you Sheila.

Hi –It sounds crazy, but I feel bound to this doctor. I am 29 but

between the ages of 16 and 22 I had the most horrendous depressions. I was

actively suicidal. This doctor actually listened to me and was always there for

me. I really feel that leaving her would be disloyal somehow. Also, my mother

goes to her and she always asks about the family, so it would be really weird.

She didn't tell me off for being on HC, but she said she was so angry at the

doctor for prescribing it to me and implied that if he had not gone to college

wit her hubby, she would have reported him to the IMC! She said that there was

" no medical basis at all " for me to be on HC and I was just too chicken to

interrupt her and explain about adrenal fatigue and stuff. I left the doctor who

put me on HC around May as he only wanted to keep me on low doses of HC and

thyroid and I felt he was overcharging for such basic service. I have heard

similar reports since then about people spending loads of money on him, but

getting nowhere.

I will email DR. H and see if he could explain why I need to be on HC. Maybe I

should just change doctors though? I don't know.... Though I am under a medical

card scheme

http://www.citizensinformation.ie/categories/health/entitlement-to-health-servic\

es/medical_card as I WAS unemployed for a year and people that were unemployed

for a year keep this card for the next three years after taking up employment.

She is listed as my doctor on the medical card scheme and I am unsure how to

change to someone else. I pay so much cash for Dr. H; I would like to use my

medical card for the VERY basic service I get here in Ireland.

A blood draw would normally take place in a hospital, but they only take bloods

if rx'd by a doctor practising within the hospital or from a GP within the

county. So, I am trying to see about the clinics list Sheila gave me and have

contacted some nurse's agencies also.

" Hang on a minute.... so Dr. H. did instruct you not to take your HC on the

morning of the blood draw... - so that is clear then. If Dr. H. says all you

need to do for this particular test is to stop your HC on the day until after

the blood draw, then this is all you need to know and do.... sorted " - I have

read that it is useless to test ACTH or anything while on a steroid. Basically I

would like to know if I have adrenal fatigue,a pituitary problem or s and

I am not sure that a test done while on steroid (even if not taken that morning)

would be accurate. I have read that there is one type of steroid that will not

interfere with the ACTH test. Maybe I should ask to be put on that?

Sadly, I did crash when I tried to wean off HC and also when I got on thyroid

with no adrenal support. It was an extremely unpleasant experience.

What I mean about being miserable and gaining weight is that if I was off the HC

I would have to come off the thyroid also and then I would go severely hypo

again, even if it was only for two weeks.

What does a parathyroid investigation mean? Is that something to do with

hypopituitary function?

Thanks !

Hi – No I don't have heavy periods, but I was at the heavier bleeding

stage when the iron and haemoglobin panel was taken.

I am currently trying to find someone to draw blood so I can investigate the

Reverse T3 issue.

Thanks everyone.

BTW what is the correct etiquette here for responding to people's posts? A new

reply for each post or a post including them all like this?

[Guest guest]

Hi Lynn,

PIL = Patient Information Leaflet....take a look at an online version for any of

the generics or Levothroid.

They are very specific about checking adrenal status.....

Any doctor showing ignorance of this fact needs to do the refresher 'course' in

endocrine medicine....or the one that they do intend to attend rather than the

one that they missed at college....or the one that they missed (thyroid disease)

whilst on the ward during their hospital induction as house officers.

best wishes

Bob

>

> Hi Bob

>

> I had the adrenal saliva test done before going on desiccated thyroid. The

bottom of the range was 21 and I was at a 20. My cortisol only came into range

at night.

>

> I just wish now I had had an ACTH STIM test and other more advanced adrenal

tests done at the same time. My inability to handle even the smallest amount of

thyroid meds without adrenal support shows there is something seriously up with

my adrenals. I have been on HC for about a year now and anything less than 25HC

and I start to get palpitations, skin crawling, extreme anxiety etc.

>

> What is a PIL?

>

> Thank you,

>

> Lynn

>

[Guest guest]

Hi Lynn,

This explains why HC is important and it may be critical for you

http://www.bristol.ac.uk/news/2009/6152.html

(Dr Malizia)

this is current and ongoing work most likely inspired by Prof Stafford Lightman

(Prof of Medicine at Bristol University) with an international reputation for

his work on steroids.

If your doctor has any doubt about the reasons for the HC ask her to telephone

Prof Lightman and get his opinion.

He's just co-authored a paper on the need for Hydrocortisone (not prednisolone

etc) since the ultradian rhythm for steroids is so important.

Ultradian Rhythm ~ less than a day ( /day is the circadian rhythm )

The overnight steroid dip is needed to allow sleep and the rise of TSH, then T4,

then T3.

best wishes

Bob

>

> Hi Bob

>

> I had the adrenal saliva test done before going on desiccated thyroid. The

bottom of the range was 21 and I was at a 20. My cortisol only came into range

at night.

>

> I just wish now I had had an ACTH STIM test and other more advanced adrenal

tests done at the same time. My inability to handle even the smallest amount of

thyroid meds without adrenal support shows there is something seriously up with

my adrenals. I have been on HC for about a year now and anything less than 25HC

and I start to get palpitations, skin crawling, extreme anxiety etc.

>

> What is a PIL?

>

> Thank you,

>

> Lynn

>

[Guest guest]

Hello Lynn,

When I read the transcript to Broda lecture on this list the other day, I came across him saying that all a doctor has to do to achieve a diagnosis, is to listen to his patient and the patient will tell him the diagnosis.... Dr. Peatfield echoes those words in his own book and to my mind this is one of the wisest thoughts to uphold in medicine. Sadly, the world we live in nowadays is such that everyone is busily rushing around, and doctors learn very little about us in those 10 minute slots we get allocated for our appointments.... perhaps, if your GP had taken the time to listen to you, she might have grasped the problem.

I am trying to put myself in your shoes, and given your circumstances, this is what *I* would do.....

First I would ask Dr. H. to help you out and to send a preliminary report to your GP. This way it is out in the open that you are seeking help from the best specialist known to you, and if your GP has got any sense, she will realize that you are at breaking point and are crying out for help. From what you are saying, she does not sound uncaring - just ill-informed.

Next I would sit down and write a letter to your GP yourself, rather than confront her in person. Take your time over constructing such a letter. Start with saying that you have privately consulted Dr. H. in Belgium, because your are extremely concerned about your rapidly failing health and despite trying, none of the doctors you have seen in Ireland so far were able to help you. Say that Dr. H. suspects a malfunctioning of your pituitary gland and subsequent failure of your adrenal glands and that he would like a number of tests done to check this out, and would she be able to help and order those tests for you. - You do not need to go into much detail - in fact, the shorter, the better. Your GP is a doctor, and even if she does not believe in "adrenal fatigue" as such, she will understand the connection between hypopituitary function and 's... that is something she *will* have been taught at med school - lets hope she remembers....

It is up to you to decide how you want to go forward. It is, btw, a hallmark of low adrenal function to be unable to handle stress - you need cortisol in order to face stress .... and you are low in that. So your body/brain is compensating by making you avoid stressful situations that would upset you.... which is why you describe yourself as 'non confrontational'. In my view dealing with it all by means of letters is a way out, avoiding to upset anyone along the line, and hopefully your GP will be willing and able to help you.

" Hang on a minute.... so Dr. H. did instruct you not to take your HC on themorning of the blood draw... - so that is clear then. If Dr. H. says all youneed to do for this particular test is to stop your HC on the day until afterthe blood draw, then this is all you need to know and do.... sorted"

- I have read that it is useless to test ACTH or anything while on a steroid.

Basically I would like to know if I have adrenal fatigue,a pituitary problem or

s and I am not sure that a test done while on steroid (even if not taken

that morning) would be accurate. I have read that there is one type of steroid

that will not interfere with the ACTH test. Maybe I should ask to be put on that?

You will have to put your trust in someone, Lynn, and Dr. H. knows what he is doing. If he said that it will suffice for you to stop your HC on the morning of the blood draw for an ACTH blood test, then I am sure he is correct. You said that he even pointed out that this was not the ACTH stim test, so he won't have given you the wrong information.

However, since you worry about it, please do ask him again to explain why your taking HC won't invalidate this blood test when you email him asking to send a report to your GP. I would be extremely interested in hearing the answer to that myself.

What does a parathyroid investigation mean? Is that something to do withhypopituitary function?

The parathyroid glands are also part of the extremely complicated endocrine system. They secret a hormone that regulates calcium, phosphorus and magnesium, which are needed for the proper functioning of bones, muscles and nerves. If there were a problem with over- or under-function of the parathyroid glands, that could also upset the whole apple cart. I am not knowledgeable enough to explain in which way the parathyroid function interacts with the hypothalamus/pituitary/thyroid function, but like little wheels in a clock, all their functions interconnect, and if one of the glands is malfunctioning, it has a knock-on effect on all the others.

Love,

[Guest guest]

I did a big long reply to the people that answered my posts. Did it get lost?

Regards,

Lynn

[Guest guest]

> I did a big long reply to the people that answered my posts. Did it

get lost?

> Regards,

>

> Lynn

Nothing has come through so far, Lynn - sorry.....

[Guest guest]

#53292 see this post .

Bob

> > I did a big long reply to the people that answered my posts. Did it

> get lost?

> > Regards,

> >

> > Lynn

>

>

>

>

> Nothing has come through so far, Lynn - sorry.....

>

>

>

[Guest guest]

>> #53292 see this post .> > Bob

Thanks Bob - I had already replied to that particular message ... I thought Lyn meant she has sent a further message thereafter...

[Guest guest]

I wrote a two page post answering everyone's questions in detail . Do posts

get lost here sometimes!?

Lynn

[Guest guest]

Lynn,

Not sure what has happened to your message. It could be because you did a "two page" message, but I am clutching at straws.

Perhaps if you have a long message you could split it up somehow.

Try sending it again. I know it is a bit frustrating especially when you have written a long one, but would it still be in your sent folder so you do not have to rewrite it just copy and paste into another email - or two

Lilian

Moderator

I wrote a two page post answering everyone's questions in detail . Do posts get lost here sometimes!?