Jump to content
RemedySpot.com

Re: Genova Tests - some results

Rate this topic


Guest guest

Recommended Posts

Guest guest

Hi Sheila

I did get that impression about Dr S that he doesn't really treat the adrenal thing from reading his book, it just seems a bit complicated to see Dr P too - I'm not sure how it would work if you see what I mean but I'm going to ask at my appointment on Friday and see what happens.

I've got the results back from my thyroid screen and reverse t3 and the adrenal stress profile and am going to attempt to post them ; )

I have been having a bit of a legal battle with my employers up until recently and my solicitor got hold of some test results that I didn't even know existed from my medical notes so I'm going to post the thyroid related ones as reference as I thought they might be helpful.

So here I go!

Blood test results February 2008TSH - 3.33 (0.40 - 5.00) Parathyroid Hormone - 2.2 (1.6 - 6.9)

Blood test results March 2009TSH - 1.97 (0.27 - 4.20) Free Thyroxine - 14.3 (12.0 - 22.0)Free T3 - 5.4 (4.0 - 6.8)

(I'm not sure if these are relevant at all but I also had the following results all with high readings at the March 2009 blood test)

Creatine Kinase - 177 High (26 - 140)C Reactive Protein - 7.4 High (0.0 - 5.0)Total Immunoglobulin - 125 High (<100)

Genova Test results from this week:

Total Thyroid Screen and Reverse T3 Blood Tests:

Total Thyroxine - 110 (Optimal Range 77 - 150)(Ref Range 58 - 154)TSH - 1.65 (Opt Range 1.0 - 2.0)(Ref Range 0.4 - 4.0)Free T4 - 13.7 (Opt Range 12 - 20)(Ref Range 10 - 22)Free T3 - 5.18 (Opt Range 3.4 - 6.0)(Ref Range 2.8 - 6.5)Free T4:Free T3 Ratio - 2.64 Low (Opt/Ref Range 3.0 - 5.0)Thyroglobulin - <20 (Opt Range <40)(Ref Range 0 - 40)Peroxidase - <10 (Opt Range <35)(Ref Range 0 - 35)Reverse T3 - 0.30 (Opt/Ref Range 0.14 - 0.54)

Adrenal Stress Profile Saliva:

Cortisol Levels:Sample 1 - 28.4 High (12 - 22)Sample 2 - 6.6 (5.0 - 9.0)Sample 3 - 4.5 (3.0 - 7.0)Sample 4 - 2.9 (1.0 - 3.0)Total Daily Cortisol - 42.4 High (21 - 41)DHEA Levels:Sample 2 - 1.37Sample 3 - 0.81DHEA Mean - 1.09 (0.40 - 1.47)DHEA:Cortisol Ratio - 2.57 (2.0 - 6.0)

Adrenal Stress Stage - Resistance stage 1 - adapted response

I've been taking levothyroxine for 7.5 weeks now and am currently on 100mcg daily. I stopped taking all my tablets for 48 hours before doing the tests (other than the levo I also take Loestrin 30 contraceptive pill to treat my endometriosis and melatonin at night to help me sleep). The Genova results for the adrenal test says that they indicate an 'acute stress response adaptation' - I wasn't stressed and I don't drink/eat caffeine because I'm allergic to it and I don't smoke.

I was reading another book about hypothyroidism yesterday and it said if you have a higher than normal cortisol reading that as well as feeling ill you can have problems converting T4 to T3 but it didn't say what you need to do to improve the situation.

I also did the thyroid urine tests but havent got the results back yet - will post them when I do.

I have no idea what all this means : ? and would appreciate any advice ; )

Many thanks

Bunny

>> Dear Bunny - you certainly have been put through the wringer and I hope you> start to see some light at the end of your long tunnel soon. DO post your> salivary adrenal results to us - you can post your 24 hour urine one's later> when you receive them, but I do think from what you are saying that they> will show you do have an adrenal problem. Unfortunately, Dr S does not treat> low adrenal reserve as far as I can make out. He used to, until the GMC got> on his back restricting his practice (which ends in November this year). >

Link to comment
Share on other sites

Guest guest

Sorry just found these that I thought might be relevant - from the March

2009 blood test results:

Iron - 17.0 (6.6 - 26.0)

TIBC - 75 (41 - 77)

Iron Saturation - 23% (20 - 55)

Ferritin - 45 (13 - 150)

25 OH Vitamin D - 79 (51 - 163) (but I was taking vit d supplements at

the time which I had to stop due to allergic reaction)

Creatine Kinase - 177 High (26 - 140)

C Reactive Protein - 7.4 High (0.0 - 5.0)

Total Immunoglobulin - 125 High (<100)

ESR - 21 High (1 - 7)

I had no idea what C Reactive Protein or ESR were so just looked them up

and found this:

'a high ESR and/or CRP indicates that you have some inflammation,

somewhere in the body'

Although someone seems to have highlighted all these results on the test

results pages with a highlighter pen, nothing was said to me and nothing

further was done to investigate them - I was just told the results were

normal so I must have ME and there was no treatment for it. I had no

infections etc at the time that I was aware of and I usually am aware of

them.

-- In thyroid treatment , " BunnyH " <karen.liff@...>

wrote:

>

>

> Hi Sheila

>

> I did get that impression about Dr S that he doesn't really treat the

> adrenal thing from reading his book, it just seems a bit complicated

to

> see Dr P too - I'm not sure how it would work if you see what I mean

but

> I'm going to ask at my appointment on Friday and see what happens.

>

> I've got the results back from my thyroid screen and reverse t3 and

the

> adrenal stress profile and am going to attempt to post them ; )

>

> I have been having a bit of a legal battle with my employers up until

> recently and my solicitor got hold of some test results that I didn't

> even know existed from my medical notes so I'm going to post the

thyroid

> related ones as reference as I thought they might be helpful.

>

> So here I go!

>

> Blood test results February 2008

> TSH - 3.33 (0.40 - 5.00)

> Parathyroid Hormone - 2.2 (1.6 - 6.9)

>

> Blood test results March 2009

> TSH - 1.97 (0.27 - 4.20)

> Free Thyroxine - 14.3 (12.0 - 22.0)

> Free T3 - 5.4 (4.0 - 6.8)

>

> (I'm not sure if these are relevant at all but I also had the

following

> results all with high readings at the March 2009 blood test)

>

> Creatine Kinase - 177 High (26 - 140)

> C Reactive Protein - 7.4 High (0.0 - 5.0)

> Total Immunoglobulin - 125 High (<100)

>

> Genova Test results from this week:

>

> Total Thyroid Screen and Reverse T3 Blood Tests:

>

> Total Thyroxine - 110 (Optimal Range 77 - 150)(Ref Range 58 - 154)

> TSH - 1.65 (Opt Range 1.0 - 2.0)(Ref Range 0.4 - 4.0)

> Free T4 - 13.7 (Opt Range 12 - 20)(Ref Range 10 - 22)

> Free T3 - 5.18 (Opt Range 3.4 - 6.0)(Ref Range 2.8 - 6.5)

> Free T4:Free T3 Ratio - 2.64 Low (Opt/Ref Range 3.0 - 5.0)

> Thyroglobulin - <20 (Opt Range <40)(Ref Range 0 - 40)

> Peroxidase - <10 (Opt Range <35)(Ref Range 0 - 35)

> Reverse T3 - 0.30 (Opt/Ref Range 0.14 - 0.54)

>

> Adrenal Stress Profile Saliva:

>

> Cortisol Levels:

> Sample 1 - 28.4 High (12 - 22)

> Sample 2 - 6.6 (5.0 - 9.0)

> Sample 3 - 4.5 (3.0 - 7.0)

> Sample 4 - 2.9 (1.0 - 3.0)

> Total Daily Cortisol - 42.4 High (21 - 41)

> DHEA Levels:

> Sample 2 - 1.37

> Sample 3 - 0.81

> DHEA Mean - 1.09 (0.40 - 1.47)

> DHEA:Cortisol Ratio - 2.57 (2.0 - 6.0)

>

> Adrenal Stress Stage - Resistance stage 1 - adapted response

>

> I've been taking levothyroxine for 7.5 weeks now and am currently on

> 100mcg daily. I stopped taking all my tablets for 48 hours before

doing

> the tests (other than the levo I also take Loestrin 30 contraceptive

> pill to treat my endometriosis and melatonin at night to help me

sleep).

> The Genova results for the adrenal test says that they indicate an

> 'acute stress response adaptation' - I wasn't stressed and I don't

> drink/eat caffeine because I'm allergic to it and I don't smoke.

>

> I was reading another book about hypothyroidism yesterday and it said

if

> you have a higher than normal cortisol reading that as well as feeling

> ill you can have problems converting T4 to T3 but it didn't say what

you

> need to do to improve the situation.

>

> I also did the thyroid urine tests but havent got the results back yet

-

> will post them when I do.

>

> I have no idea what all this means : ? and would appreciate any advice

;

> )

>

> Many thanks

>

> Bunny

>

>

>

>

> >

> > Dear Bunny - you certainly have been put through the wringer and I

> hope you

> > start to see some light at the end of your long tunnel soon. DO post

> your

> > salivary adrenal results to us - you can post your 24 hour urine

one's

> later

> > when you receive them, but I do think from what you are saying that

> they

> > will show you do have an adrenal problem. Unfortunately, Dr S does

not

> treat

> > low adrenal reserve as far as I can make out. He used to, until the

> GMC got

> > on his back restricting his practice (which ends in November this

> year).

> >

>

Link to comment
Share on other sites

Guest guest

good, as opposed to bad solutions? :-)

Seriphos, http://www.moodcure.com/correcting_cortisol_levels.html

" Remedies for mood or sleep problems caused by elevated cortisol:

If you are a night owl, a supplement containing a cortisol-regulating nutrient

called phosphorylated serine (brand name Seriphos, this is not the more readily

available phosphotidyl serine), taken before dinner (approximately four-six

hours before bedtime), should get you to sleep "

Ross's book is well worth a read (mood cure above is her site)

http://www.amazon.co.uk/Mood-Cure-Charge-Emotions-Supplements/dp/0007323697/ref=\

sr_1_1?ie=UTF8 & s=books & qid=1272822654 & sr=8-1

Or Apex Adrenacalm

http://www.myvits.com/product/f0d314eb-1883-428b-ad86-6b4f6a63a2f0.aspx

> If anyone does have good solutions to the high cortisol problems it would be

great to see them posted here.

>

> Vicky

Link to comment
Share on other sites

Guest guest

Thanks useful advice as always!

What i do not understand, is if one has high cortisol in the mornings it would

seem to imply that one has high energy in the mornings. For me (like most

hypots) it takes me a year and a day to get going in the morning and as the day

wears on things gradually get better - only to then have to beware the second

burst of energy that prevents me from going to bed at a reasonable time and then

threatens survival the next day even more. Yes - classic - but WHY?!I guess I

really do need to deal with that saliva test - I just keep thinking I must get

the basic vitamins and minerals in first and give my system the breaks it needs

to help it to work and then deal with that later on....

Hope you are OK - as you can see I haven't managed to keep myself off the PC

despite my intentions(!)

Vicky

> > > If anyone does have good solutions to the high cortisol problems it would

be great to see them posted here.

> > >

> > > Vicky

> >

>

Link to comment
Share on other sites

Guest guest

http://www.naturalnews.com/019339_adrenal_fatigue_chronic_stress.html

Symptoms of adrenal fatigue:

Morning fatigue -- You don't really seem to " wake up " until 10 a.m., even if

you've been awake since 7 a.m.

Afternoon " low " (feelings of sleepiness or clouded thinking) from 2 to 4 p.m.

Burst of energy at 6 p.m. -- You finally feel better from your afternoon lull.

Sleepiness at 9 to 10 p.m. -- However, you resist going to sleep.

** " Second wind " at 11 p.m. that lasts until about 1 a.m., when you finally go to

sleep.

i have read different things, including the body is trying to flog the adrenals

into action but it takes them all day to respond

>

> Thanks useful advice as always!

>

> What i do not understand, is if one has high cortisol in the mornings it would

seem to imply that one has high energy in the mornings. For me (like most

hypots) it takes me a year and a day to get going in the morning and as the day

wears on things gradually get better - only to then have to beware the **second

burst of energy that prevents me from going to bed at a reasonable time

Link to comment
Share on other sites

Guest guest

Hi Vicky

The book I'm reading at the moment has a adrenal saliva results chart in it

almost identical to mine (in that it has high cortisol in the morning but is

then close to normal throughout the rest of the day and it says:

'This does not necessarily mean that this person will have lots of energy - many

people with high cortisol describe symptoms of fatigue, anxiety, and insomnia

(similar to low cortisol symptoms). High cortisol can impair the conversion of

T3 to T4. Looking at the big picture, this person has high cortisol and the

rhythm is not normal.'

(Stop The Thryoid Madness - J A Bowthorpe)

When I first looked at my results before reading that they didn't seem to relate

to how I was feeling at all, as the way I feel fits exactly the description of

adrenal fatigue, but if high cortisol can cause the same symptoms as low

cortisol then I guess I can see it makes sense.

I'm not sure how useful the test is though if the doctor I'm seeing doesn't

treat adrenal fatigue (assuming I even have it) and not being well enough to

interpret the results of all these tests myself makes me feel like they were

slightly pointless. It could just be the situation generally but I'm sure

levothyroxine is making me feel depressed as well now. I wish I'd discovered

all this years ago when I was well enough to do something about it ; (

Bunny

>

>

> Hi Bunny,

>

> I will be watching with great interest to see how you get on with the cortisol

problem. My cortisol serum test was moderately raised (not enough to worry a

GP).

Link to comment
Share on other sites

Guest guest

Adrenal Stress Profile Saliva:

Cortisol Levels:

Sample 1 - 28.4 High (12 - 22)

Sample 2 - 6.6 (5.0 - 9.0)

Sample 3 - 4.5 (3.0 - 7.0)

Sample 4 - 2.9 (1.0 - 3.0)

Total Daily Cortisol - 42.4 High (21 - 41)

DHEA Levels:

Sample 2 - 1.37

Sample 3 - 0.81

DHEA Mean - 1.09 (0.40 - 1.47)

DHEA:Cortisol Ratio - 2.57 (2.0 - 6.0)

You seem to have most of your tests back quickly, although when you get the

thyroid urine test back, do post that result as well. It can give a good

picture.

" Adrenal Stress Stage - Resistance stage 1 - adapted response

The Genova results for the adrenal test says that they indicate an

'acute stress response adaptation' - I wasn't stressed and I don't

drink/eat caffeine because I'm allergic to it and I don't smoke.

I was reading another book about hypothyroidism yesterday and it said if you

have a higher than normal cortisol reading that as well as feeling ill you can

have problems converting T4 to T3 but it didn't say what you need to do to

improve the situation. "

Looking at your saliva results, they don't seem too bad? i.e. only one reading

out of range, which was the high one.

I am sure being physically ill with poor thyroid functioning is a physiological

stress for the body. So perhaps that's the stress, rather than say emotional

stress about a bad situation in the family or whatever. You know what I mean? If

you feel like things are an arduous undertaking, this is a physical stress isn't

it.

You mention about improving the siutation with regards to converting T4 to T3.

This is why there is so much talk about Armour and or T3 tablets. This is why so

many of us feel better with T3 and it improves your health and functioning.

I would assume that most of us need an adrenal supplement? i.e. any abnormality

in that test, means that you need some degree of adrenal support, to help that

and to help the thyroid? Clearly it's a specialist thing and only Dr P or Dr S

could advise about how much to take and why etc. But there are things we can do

about the conversion issue. I do believe, this is why I was told to take

Selenium to help the thyroid conversion.

Fiona

Link to comment
Share on other sites

Guest guest

Hi Fiona

I'm not sure how much I trust the adrenal test to be honest or any test really

as they never seem to correlate in any way with how bad I am actually feeling.

If I'm lucky I might have one or two hours of energy in the evenings, but the

rest of the day I am absolutely shattered and then naturally I am wide awake

throughout the night ; ) I just wish these tests would actually tell me

something for a change - although even when they have my doctors have completely

ignored it anyway, so I'm really not sure how much use they are. I was hoping

they would give me some indication of what to do going forward though and I'm

not sure they have.

I stopped taking levothyroxine today - I think 7.5 weeks is long enough to see

if it helps me and it's only made me feel far far worse. This weekend was just

the end of the line for it really - my neck has swollen up so much my chin has

totally disappeared now, I have raw itchy lumps all over my face and a massive

angry rash appeared all over the sides of my face and all down my neck and

chest. I've been itching like crazy all weekend and feel totally awful.

The thing is I am used to being prescribed tablets that make me feel worse

before they are meant to start helping me, so I wanted to get up to the 100mcg,

which I did 10 days ago and make absolutely sure that it wasn't helping and I

also didn't want to go back and be told that it might help if the dose was

increased cos I'd given up on it too early. At least I know now that increasing

the dose just increased the awfulness.

I did start taking levothyroxine before taking any adrenal supplements yes (you

asked this earlier) but to be honest I knew nothing about adrenal problems until

I came across the TPA website and that was after I'd had my first appointment

with Dr S and been given the thyroxine for 3 months and told to come back in

two. But I presumed he would know these sorts of things so if there was

anything else that needed looking into that he would do that just as a matter of

course.

My Mum who also has hypothyroidism and all of my 4 cousins have all been given

levothyroxine and all but one of them seem to be doing much better on it, they

are out and about which they weren't before and have also lost lots of weight

and just look healthier all round - so that was my experience of it prior to

finding this site and so I thought it would just be the same for me - I had no

idea that there were all these other things I had to consider. I just thought I

would take it and get better just like Dr S said I would.

Now I'm not really sure what to do because I don't know if my adrenal test

results are telling me I should take adrenal supplements or not. I'm not really

sure what is going on exactly - from the test results I've been able to find in

my notes I can see my TSH levels have been high (7.3 was the highest I found)

but have gradually come down even before I started taking the thyroxine - I'm

not sure if they just go up and down all the time and it just so happens that my

blood tests have caught them on the way down all the time. But in the same

space of time they have gradually gone down I seem to have got far worse symptom

wise.

Something is obviously going on because although I've been ill for some time it

is now starting to show unmistakeably to other people - my hair started falling

out last year and I had to have it all shaved off - it is growing back now but

with obvious bare patches - my skin is just going crazy on my face in

particular, my eyes are permanently bloodshot and swollen, my joints are

crunching like mad and supplements make no difference and I just look awful.

Aside from the thyroxine making me worse it just feels like something is making

everything much worse and I just don't know what it is. I was just hoping the

test results would give me more of a clear indication on what needs sorting out.

As you can probably tell I am not feeling that positive right now - I am going

back to see Dr S on Friday but am dreading the journey there and back as even

the idea of walking to the local train station feels like too much for me right

now. But I'm hoping not I've stopped taking thryoxine having a couple of days

without it will make me feel slightly better and more able to manage it.

I don't think I can get to see Dr P - at least not until I feel considerably

better which is kind of defeating the object, so I think I am going to find out

how to get the health report by post and do that. That will be something at

least - I just really need someone to look at my results and interpret them and

tell me what to do now. Had you had all the tests for ferritin, B12 etc done

before you went to see Dr P? I'm just wondering whether to get those done first

before I send off the questionnaire - I had them done a few years ago but they

are probably too old to go by now. Genova seem to do most of them but I can't

seem to find anywhere that tests for magnesium, copper and zinc which I'm

presuming are blood tests. I did a hair sample one about a year ago but I'm not

sure how reliable they are so really want to just get them all done again really

for accuracy.

Thanks for your help ; )

Bunny

> You mention about improving the siutation with regards to converting T4 to T3.

This is why there is so much talk about Armour and or T3 tablets. This is why so

many of us feel better with T3 and it improves your health and functioning.

>

> I would assume that most of us need an adrenal supplement? i.e. any

abnormality in that test, means that you need some degree of adrenal support, to

help that and to help the thyroid? Clearly it's a specialist thing and only Dr P

or Dr S could advise about how much to take and why etc. But there are things we

can do about the conversion issue. I do believe, this is why I was told to take

Selenium to help the thyroid conversion.

>

> Fiona

>

Link to comment
Share on other sites

Guest guest

I Bunny, I can assure you that the 24 hour salivary adrenal

profile is an excellent test. It tests your cortisol and DHEA at four specific

times during the day. At those specific times, your cortisol and DHEA have

their own specific reference ranges, so you know just exactly what is happening

throughout the whole day.

Being wide awake throughout the night would suggest that your

Cortisol at that time is too high - it should be low at night to enable your

body to calm down after the days activities and let you go to sleep. Why don't

you telephone Genova Diagnostics and ask to speak to Dr Nigel Abrahams and ask

him to explain exactly what your specific cortisol and DHEA levels mean as you

can't understand them, He is a lovely man and will be happy to help you. Ask

him also whether you should be taking adrenal supplements. This is his

specialty. Tell him, if you wish, that Sheila from TPA asked you to contact him

as you are so concerned.

7.5 weeks is most definitely NOT long enough for anybody to tell

whether levothyroxine is working or not. You start at a low dose, and after 6

weeks you increase by another 25 mcgs, and keep increasing by such a dose every

6 weeks until your symptoms have disappeared and your blood results have

normalised. When starting such treatment, you must be patient. However,

if the levothyroxine is actually making you feel worse, then there is obviously

another condition stopping it from being properly absorbed.

It does sound from your symptoms that you allergic to one of the

fillers in levothyroxine which could be maize or lactose. You MUST get tested

for lactose and maize intolerance. have you told your GP. He can prescribe you

pure levothyroxine which he gets from dale's Pharmaceuticals. Talk to him

about it - you will get really poorly if you are not making the thyroid hormone

your body needs, and you are not taking any replacement. If you are allergic to

the fillers, then definitely, by increasing your dose, you would feel so very

much worse.

Have you been tested to see whether you have antibodies to your

thyroid (Hashimoto's disease)? The levothyroxine would have made your TSH

decrease, but by how much did it decrease before you started thyroxine?

Have you been checked by your GP to see if your blood tests show

low for ferritin, vitamin B12, vitamin D3, magnesium, folate, copper or zinc. I

ask this because if any of these are low in the range, your thyroxine is unable

to convert to T3. You should also definitely insist on your GP testing your

free T3 and to telephone the laboratory to ask that they specifically test for

this. You do not have to get these tests done privately, you are entitled to

get them done within the NHS - so INSIST

If you are going to have a telephone consultation with Dr

Peatfield, then I would get your GP to do as many tests done as you can - they

will all help build up a true picture of what is happening - or is not

happening.

Luv - Sheila

I don't think I can get to see Dr P - at least not until I feel considerably

better which is kind of defeating the object, so I think I am going to find out

how to get the health report by post and do that. That will be something at

least - I just really need someone to look at my results and interpret them and

tell me what to do now. Had you had all the tests for ferritin, B12 etc done

before you went to see Dr P? I'm just wondering whether to get those done first

before I send off the questionnaire - I had them done a few years ago but they

are probably too old to go by now. Genova seem to do most of them but I can't

seem to find anywhere that tests for magnesium, copper and zinc which I'm

presuming are blood tests. I did a hair sample one about a year ago but I'm not

sure how reliable they are so really want to just get them all done again

really for accuracy.

Thanks for your help ; )

Bunny

Link to comment
Share on other sites

Guest guest

> I stopped taking levothyroxine today - I think 7.5 weeks is long >enough to

see if it helps me and it's only made me feel far far >worse. This weekend was

just the end of the line for it really - my >neck has swollen up so much my chin

has totally disappeared now, I >have raw itchy lumps all over my face and a

massive angry rash >appeared all over the sides of my face and all down my neck

and >chest. I've been itching like crazy all weekend and feel totally >awful...

> Something is obviously going on because although I've been ill for >some time

it is now starting to show unmistakeably to other people - >my hair started

falling out last year and I had to have it all >shaved off - it is growing back

now but with obvious bare patches - >my skin is just going crazy on my face in

particular, my eyes are >permanently bloodshot and swollen, my joints are

crunching like mad >and supplements make no difference and I just look awful.

Aside >from the thyroxine making me worse it just feels like something is

>making everything much worse and I just don't know what it is. I w>as just

hoping the test results would give me more of a clear i>ndication on what needs

sorting out.

I am worried about the above! Have you contacted Dr S about this bad experience?

(first paragraph I quoted)?

Was it an allergic reaction to the tablets? Was it a different manufacturer of

Levothyroxine than you had the last time? It's just that I had a bad experience,

where I felt like I had gone all week without, when I hadn't forgotten any

tablets. I now stick with the same sort of Levothyroxine, to cut out this risk,

to give me peace of mind. Therefore if this is the only time this has happened,

you could always get a prescription request for another lot and request the

brand you trust from the pharmacy.

Are you lactose intolerant? Had any allergies to medications before?

What you have to decide is, is this this specific manufacturer of Levothyroxine,

or any Levothyroxine that is causing a problem?

Otherwise I think there is always light at the end of the tunnel and that there

is no way it's possible to be severely ill, without there being anything that

you can do about it. I went to DR P out of desperation, not knowing if he could

help or not, when I was at my worst. I.e. never been so ill, in bed all day, out

of bed, doing two ten mins tasks a day. Life was a nightmare at that point.

I think this is why we need the specialists, to interpret the tests for us, so

they make sense so to speak. I wonder if the urine test (the one you are still

waiting for) will give a bigger picture and relate to how bad you are feeling.

Surely it will only be a couple of days away, and don't make any big decisions

until you have this test result.

Clearly only medical advice can determine if you should be taking adrenal

supplements and I woudn't like to do that on my own initiative, without advice.

By the way, I had some tests like B12, feritin etc (had to for the NHS to put

you on scrap-heap with ME diagnosis). I didn't actually take them to DR P

appointment. It has only been more recently that I have been getting print-outs

of my blood results and didn't in the past, to know if for years my iron stores

have been at the low end of normal or not. This is the downside of the

receptionist telling you that your bloods are fine...

Fiona.

Link to comment
Share on other sites

Guest guest

Hi Sheila

Being wide awake at night would suggest that my cortisol level at night is too high and that is what I expected to see - but unfortunately that isn't what the adrenal saliva tests results showed. I can't telephone Genova unfortunately as I am hard of hearing. I'm sure the tests are helpful for many people but I am obviously disappointed that they have not shown what I was expecting them to show and do not seem to tally with my symptoms.

I did post my thyroid test results earlier in this thread along with TSH levels from previous tests but I think they just got lost as the thread continued - I was going to repost them once my urine test results come rather than keep reposting the same stuff, but as that hasn't come yet here they are:

Blood test results February 2008 (I also had a previous TSH of 7.3 but it hasn't got a date on it - I'm sure it's pre 2007 tho)TSH - 3.33 (0.40 - 5.00) Parathyroid Hormone - 2.2 (1.6 - 6.9)

Blood test results March 2009TSH - 1.97 (0.27 - 4.20) Free Thyroxine - 14.3 (12.0 - 22.0)Free T3 - 5.4 (4.0 - 6.8)

(I'm not sure if these are relevant at all but I also had the following results all with high readings at the March 2009 blood test)

Creatine Kinase - 177 High (26 - 140)C Reactive Protein - 7.4 High (0.0 - 5.0)Total Immunoglobulin E - 125 High (<100)ESR - 21 High (1 - 7)

and these were also from the March 2009 test but all seem okay:Iron - 17.0 (6.6 - 26.0)TIBC - 75 (41 - 77)Iron Saturation - 23% (20 - 55)Ferritin - 45 (13 - 150)25 OH Vitamin D - 79 (51 - 163) (but I was taking vit d supplements atthe time which I had to stop due to allergic reaction)

Genova Test results from this week: (after being on thyroxine for 6.5 weeks - I stopped taking them for 48 hours before tests)

Total Thyroid Screen and Reverse T3 Blood Tests:

Total Thyroxine - 110 (Optimal Range 77 - 150)(Ref Range 58 - 154)TSH - 1.65 (Opt Range 1.0 - 2.0)(Ref Range 0.4 - 4.0)Free T4 - 13.7 (Opt Range 12 - 20)(Ref Range 10 - 22)Free T3 - 5.18 (Opt Range 3.4 - 6.0)(Ref Range 2.8 - 6.5)Free T4:Free T3 Ratio - 2.64 Low (Opt/Ref Range 3.0 - 5.0)Thyroglobulin - <20 (Opt Range <40)(Ref Range 0 - 40)Peroxidase - <10 (Opt Range <35)(Ref Range 0 - 35)Reverse T3 - 0.30 (Opt/Ref Range 0.14 - 0.54)

Adrenal Stress Profile Saliva:

Cortisol Levels:Sample 1 - 28.4 High (12 - 22)Sample 2 - 6.6 (5.0 - 9.0)Sample 3 - 4.5 (3.0 - 7.0)Sample 4 - 2.9 (1.0 - 3.0)Total Daily Cortisol - 42.4 High (21 - 41)DHEA Levels:Sample 2 - 1.37Sample 3 - 0.81DHEA Mean - 1.09 (0.40 - 1.47)DHEA:Cortisol Ratio - 2.57 (2.0 - 6.0)

Adrenal Stress Stage - Resistance stage 1 - adapted response

I'm beginning to find it rather confusing to be honest because earlier when I posted that I was feeling worse after taking levothyroxine for 6 weeks or so I was advised that I should be feeling better by now and not worse - and I also got this impression from Dr S's book which gives a detailed account of how most people feel when starting and continuing to take thyroxine. 7.5 weeks was more than enough time for me to gather it is useless for me and I think I have been pretty patient given that I've spent nearly 7 weeks now unable to get out of bed most of the day and sadly I am not exaggerating. I started on 50mcg for 3 weeks, then 75mcg for 3 weeks and have been on 100 mcg for about 10 days now - and except for the first week when I felt much better I have felt consistently crap every single day. I took the dose and increased it as advised by Dr S and that is what he told me to do. I've already been tested for maize and lactose intolerance and it came back normal - that was two years ago when I reacted to the Vit D I was taking.

My GP will not send me for any more blood tests because she thinks my thyroid results are normal - and thought they were normal even with a TSH result of 3.3 - she also now has a 4 page letter from the private endocrinologist I saw stating that I do not have a thyroid problem and no further tests are needed. ly going to see that endocrinologist was the worst thing I ever did because it just put the final nail in the coffin of me ever getting this treated on the NHS. I am trying to change GP but it is not an easy task because I live in a tiny village where my GP is basically the only GP there is. There is another practice about a two mile walk away but it is temporarily closed at present and they have not said when it will reopen - it also has a horrendous reputation as being the worst in the area. There are practices in the towns around where I live but they have all stated that they do not cover my area and even if I did manage to get in there they are miles away and I have to work out some way of getting there. Besides which all my notes will remain the same so the chances are they will take exactly the same attitude as my current GP. So it's not that I find it hard to leave my current GP it's just that I don't have a great deal of options.

Unfortunately if I want to get any tests done at the moment I do have to pay for them myself - I will probably just get them done through genova and go to the same lab as before but will have to wait til I feel well enough to get to the lab as I don't at present. I can't seem to find tests for magnesium, zinc or copper on their website though but I am probably just being blind again.

Even if I do figure out the cause of me not getting on with thyroxine I'll be honest - I DO NOT want to take that tablet ever again - I am highly allergic to most things synthetic and since I am having to pay for everything myself anyway I would rather just take the natural version that likely has more chance of helping me anyway and will be asking Dr S about it on Friday.

I'm going to apologise in advance if this message comes across as grumpy - I'm sure thyroxine is also making me feel very depressed and I'll be very glad when it gets out of my system and I go back to feeling crap but hopeful, which is how I usually am.

Bunny

>> I Bunny, I can assure you that the 24 hour salivary adrenal profile is an> excellent test. It tests your cortisol and DHEA at four specific times> during the day. At those specific times, your cortisol and DHEA have their> own specific reference ranges, so you know just exactly what is happening> throughout the whole day.> > Being wide awake throughout the night would suggest that your Cortisol at> that time is too high - it should be low at night to enable your body to> calm down after the days activities and let you go to sleep.

Link to comment
Share on other sites

Guest guest

Hi Bunny

Have you tried taking the thyroxine at night rather than in the morning to see

if it makes any difference?

L

>

> Even if I do figure out the cause of me not getting on with thyroxine

> Bunny

>

>

Link to comment
Share on other sites

Guest guest

Hi L

Yeh I did try that for a few nights - I read about it on here in the files

section so thought it might be the answer - but it didn't seem to make the

slightest bit of difference. As long as I take it at all I feel awful and as

soon as I stop for a few days, which I did before having the blood test done and

have done today, I gradually start to feel better again - well back to what I

was before taking it anyway.

Bunny

>

> Hi Bunny

>

> Have you tried taking the thyroxine at night rather than in the morning to see

if it makes any difference?

>

> L

>

>

> >

> > Even if I do figure out the cause of me not getting on with thyroxine

>

> > Bunny

> >

> >

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...