DIY doctor to my daughter - help!

[Guest guest]

Hi I need help!! My daughter has had ME for 5 years (is 16) and through hours

spent on the internet and £££s spent on private docs I have managed to sort out

a lot of her symptoms, chuck out the wheelchair and get her into school more,

which is great.

However in April last year we got overconfident and off she went on a 4 day

scout/explorer camp, which involved v late nights and v early mornings.

Basically she crashed about a week later, which means that from May last year

she has been unable to wake up in the mornings. Not the teenager 'can't be

bothered to get out of bed' stuff but it's like she's under an anaesthetic and

it's really really hard to help her to come round. Most days she is up and ready

for school at 11.30am and this has been the case since May 2011. Before that she

would be ready by 10am.

Without going into too much detail she has done 3 adrenal saliva tests now

(between june 09 and March 2011)and they have all been very poor so she has been

taking NAE (4 a day at moment) for a good few years. I can't get her adrenals

tested since she crashed because she is not up early enough, but I think

basically her adrenals are exhausted. I took her to the GP in May 2011 out of

desperation and of course he was not interested in the adrenal stuff, went on

about her not having s etc and her thyroid was 'normal'.Basically there

was nothing they could do.

Anyway her test results in May 2011 were:

TSH 1.15 (0.25-5.0)

Free T4 12.8 (9.0-23)

Her last adrenal test (genova 3/2011) was:

Sample 1 11 (12-22)

Sample 2 2.3 (5-9)

Sample 3 1.2 (3-7)

Sample 4 1.9 (1-3)

I have tried everything re her trying to help her adrenals , cortisol tabs,

pregnenolone, salt water, Adrenal supps, etc but nothing is making any

difference.

I have got to do something, I am scared of thyroid meds because I understand if

you have ME they can make you worse in the long run but I have to try and help

her this has been going on for so long and no one (docs, school etc) is

bothered.

Please help!!

Liz x

[Guest guest]

Hi Liz

it must be so distressing to see your daughter going through this,

I'm afraid the only advice I can give is to take her to see Dr Peatfield as I

have read a number of posts here that say he is very good with adrenal problems.

If you click on the files link, then scroll down to file called Dr Peatfield and

then click on the file called 'ThePeatfieldClinicQuestionnaire-July 06'

at the end of the questionnaire are his contact details.

I hope you both get the help you need very soon.

luv Sian x

>

> Hi I need help!! My daughter has had ME for 5 years (is 16) and through hours

spent on the internet and £££s spent on private docs I have managed to sort out

a lot of her symptoms, chuck out the wheelchair and get her into school more,

which is great.

[Guest guest]

Hi Liz

it must be so distressing to see your daughter going through this,

I'm afraid the only advice I can give is to take her to see Dr Peatfield as I

have read a number of posts here that say he is very good with adrenal problems.

If you click on the files link, then scroll down to file called Dr Peatfield and

then click on the file called 'ThePeatfieldClinicQuestionnaire-July 06'

at the end of the questionnaire are his contact details.

I hope you both get the help you need very soon.

luv Sian x

>

> Hi I need help!! My daughter has had ME for 5 years (is 16) and through hours

spent on the internet and £££s spent on private docs I have managed to sort out

a lot of her symptoms, chuck out the wheelchair and get her into school more,

which is great.

[Guest guest]

On Thu, 19 Jan 2012 12:53:35 -0000, you wrote:

>Hi I need help!! My daughter has had ME for 5 years (is 16) and through hours

spent on the internet and £££s spent on private docs I have managed to sort out

a lot of her symptoms, chuck out the wheelchair and get her into school more,

which is great.

Glad to hear some progress, sorrt she's struggling still

>

>However in April last year we got overconfident and off she went on a 4 day

scout/explorer camp, which involved v late nights and v early mornings.

Basically she crashed about a week later, which means that from May last year

she has been unable to wake up in the mornings. Not the teenager 'can't be

bothered to get out of bed' stuff but it's like she's under an anaesthetic and

it's really really hard to help her to come round. Most days she is up and ready

for school at 11.30am and this has been the case since May 2011. Before that she

would be ready by 10am.

>

Sounds adrenal to me

>Without going into too much detail she has done 3 adrenal saliva tests now

(between june 09 and March 2011)and they have all been very poor so she has been

taking NAE (4 a day at moment) for a good few years. I can't get her adrenals

tested since she crashed because she is not up early enough, but I think

basically her adrenals are exhausted. I took her to the GP in May 2011 out of

desperation and of course he was not interested in the adrenal stuff, went on

about her not having s etc and her thyroid was 'normal'.Basically there

was nothing they could do.

>

>Anyway her test results in May 2011 were:

>TSH 1.15 (0.25-5.0)

>Free T4 12.8 (9.0-23)

>

>Her last adrenal test (genova 3/2011) was:

>Sample 1 11 (12-22)

>Sample 2 2.3 (5-9)

>Sample 3 1.2 (3-7)

>Sample 4 1.9 (1-3)

with labs like that she needs to go onto HC

The morning needs to be top of range, lunchtime near the top sample 3

mid range, and sample 4 near the bottom.

>

>I have tried everything re her trying to help her adrenals , cortisol tabs,

pregnenolone, salt water, Adrenal supps, etc but nothing is making any

difference.

>I have got to do something, I am scared of thyroid meds because I understand if

you have ME they can make you worse in the long run but I have to try and help

her this has been going on for so long and no one (docs, school etc) is

bothered.

>Please help!!

Coming in because nobody has answered and you need help, I am not an

adrenals person but have seen a lot of results discussed.

Sheila can hopefully give you some advice on HC in the UK, I do know

of some " non prescription " sources but Sheila may be able to help more

Nick

[Guest guest]

Off topic slightly, but Home Educating her is a legal option. She will at least

be able to work at her own pace without causing a worsening of her health

problems. This is different from the, off school because of health reasons where

the Local Authority send someone to the house for 2 hours a week.

If she is legally Home Educated then you can't be forced to send her to school

on days she can't cope, just because 'its the law'.

If you want more information contact me direct.

2.

>

> Hi I need help!! My daughter has had ME for 5 years (is 16) and through hours

spent on the internet and £££s spent on private docs I have managed to sort out

a lot of her symptoms, chuck out the wheelchair and get her into school more,

which is great.

>

[Guest guest]

Hello Liz

Here TSH is fine, though that tells us nothing, but her free T4

is very low. For anybody not taking thyroid hormone medication her result

should be just above the middle of the reference range, so rather than her

result being 12.8 - it really should be in the region of 16/17. The less

thyroxine she is making the less there will be to convert into the active

thyroid hormone T3 and it is T3 that every cell in her body and brain need to

make them function as they should. Any chance you can get these tested again,

as it would be good to know what is happening now, but she should also have her

level of free T3 tested and also be tested to see whether she has thyroid

antibodies. These are TPO and Tg.

Who on earth told you that for those with ME, taking thyroid

meds.can make you worse in the long run? ME, CFS and FM can all be symptoms of

hypothyroidism. Get her thyroid treated properly and she will lose those

symptoms. Why are you afraid of thyroid hormones. If any gland in your body is

not making sufficient of the hormone that it should, you have no choice but to

supplement with that hormone. If the thyroid is not secreting sufficient

hormone or the hormone is not be properly utilised at the cellular level, you

have no choice but to replace it with thyroid hormone. And, in the majority of

cases, we need to take thyroid hormone replacement for the rest of your life.

I would suggest that you buy Dr Peatfield's book 'How to Keep

your Thyroid Healthy' (or you can borrow this from the TPA Library) - this

should help you understand how the thyroid system works. I have also attached a

list of associated conditions that go along with being hypothyroid - check

these out and go through them by way of a process of elimination.

It is also important that she gets her levels of iron,

transferrin saturation%, ferritin, vitamin B12, vitamin D3, magnesium, folate,

copper and zinc tested. If any of these are low in the range, once again, the

thyroid hormone (not even her own) can be used by the cells. If her GP says

there is no association between low levels of these specific nutrients and low

thyroid, then copy off the attached list of just some of the references to the

research/studies done to show that there is.

Her last adrenal test (genova 3/2011) was:

Sample 1 11 (12-22) - this is too low. Cortisol

production should be at it's highest in the morning.

Sample 2 2.3 (5-9) - this too is too low, and

should be aroundf 4/5

Sample 3 1.2 (3-7) - this is right outside of the

bottom of the reference range

Sample 4 1.9 (1-3) - this is the only one that is

where it should be

However, last March is a long time ago to tell what might be

happening to her right now. You need to get her GP to refer you to the hospital

so she can have a short synacthen test. I know that this has to be done as near

to 9.00a.m. as possible, and you would probably need an alarm clock to wake her

up, but if the will is there, this can be done. Have you been self treating her

adrenals, or have you been seeing a private doctor such as Dr Peatfield or

somebody else. This needs to be checked and treatment recommended by somebody

who has experience in this particular field.

Luv - Sheila

I have tried everything re her trying to help her adrenals , cortisol tabs,

pregnenolone, salt water, Adrenal supps, etc but nothing is making any

difference.

I have got to do something, I am scared of thyroid meds because I understand if

you have ME they can make you worse in the long run but I have to try and help

her this has been going on for so long and no one (docs, school etc) is

bothered.

Please help!!

Liz x

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4752 - Release Date: 01/18/12

2 of 2 File(s)

MINERALS AND VIT. TESTING.doc

WHY THYROID HORMONE REPLACEMENT MAY NOT BE WORKING FOR YOU.doc

[Guest guest]

....However, last March is a long time ago to tell what might be happening to her right now. You need to get her GP to refer you to the hospital so she can have a short synacthen test. I know that this has to be done as near to 9.00a.m. as possible, and you would probably need an alarm clock to wake her up, but if the will is there, this can be done. Have you been self treating her adrenals, or have you been seeing a private doctor such as Dr Peatfield or somebody else. This needs to be checked and treatment recommended by somebody who has experience in this particular field.

Hello Liz,

I wholeheartedly agree with Sheila. Your daughter needs to have an SST (short synacthen test) to check her adrenal function and to rule out primary or secondary 's –whatever this GP of yours says. Do not take no for an answer from your doctor who apparently has no knowledge of this very specialist subject.

However, if your daughter were currently on any kind of sex hormone or glucocorticoids (HC, prednisolone, etc) a test result would not be accurate when testing for 's disease. In order to get a valid result she needs to be off any kind of steroids ideally for a duration of 6 weeks... there is one exception (steroid) which will not falsify the results and this is Dexamethasone. So if need be, she could be maintained for a short while on Dex.

Please insist (and make sure of it) that your doctor orders not only an SST but an ACTH serum test with it. This is of the utmost importance, because the ACTH serum result can be instrumental in diagnosing (or ruling out) secondary 's (which means in most cases a malfunctioning of the pituitary gland).

Furthermore insist – as Sheila said – on an appointment time of no later than 9 am – earlier if possible, because they rarely start exactly on time.... and something else....- on the day of the test your daughter needs to be as calm as possible and she needs to be fastened (no breakfast). No excessive stress whatsoever is allowed and she needs to lie down during the duration of the test (I have heard reports where the patient was allowed to wander off in between the blood draws to have a cuppa – this is an absolute no-no!).

Any stress will artificially push up the base cortisol level (it can as much as double the base level cortisol figure) and give a false starting point. Therefore you need to allow ample time to get her to the hospital for the test, preferably well ahead of the appointed time, so she can calm down and is not rushed in any way. I appreciate that this could prove to be very difficult to do, but if you were going to do this test then it must be done under the right conditions. It is difficult enough to interpret a possible borderline result at the best of times, so you need to make sure that the conditions that are required will be followed to a T and also that blood for the ACTH serum test is being drawn at the same time as the baseline cortisol (!) - discuss this with the nurse before they start. You won't believe how often the ACTH serum test gets messed up due to lack of knowledge by the nurse or doctor.

Please read below about the correct procedure for an SST. Do not be confused by the mention of steroids that should not be taken on the day of the test – this test is designed to check for a number of illnesses, not just 's... but to rule out any kind of 's your daughter would need to be off all steroids for ideally 6 weeks before the test. If that were not possible, she could be maintained short term on Dexamethasone....

http://dialspace.dial.pipex.com/town/estate/aquc35/book/Bible2010v1b.pdf - go to page 48

One other thought.... is your daughter a normal weight/underweight or overweight? Primary 's is possible but not very likely in an overweight person. People with primary 's tend to have trouble in putting on, or keeping on, weight. Although this is just a probability and not written in stone.

As an afterthought.... it is a long shot because it is an incredibly rare condition (even rarer than primary 's) , but has Kleine Levin Syndrome ever been considered with your daughter? http://en.wikipedia.org/wiki/Kleine-Levin_syndrome

The symptoms you describe don't really sound like KLS, but perhaps there are milder forms of this disease??? – As I said, it's just an afterthought.

With best wishes,

[Guest guest]

Hi Liz,

So sorry to hear about your daughter. Just wanted to let you know that I have

been in a similar situation to you with my own daughter who is 13. She was

totally unable to get out of bed in the morning and in the end I had to remove

her from school and home educate her. That was the very best thing that I could

have done for her as even now that she is on medication she still needs to pace

herself - she wouls still not be able to cope with a full school day or with

sports etc. That doesn't matter though as she is learning far more at home than

she ever did in school.

This group is excellent and without the support from here I would not have got

my daughter on the path to wellness. However, I will say that I have no help

from the NHS - they still consider everything to be normal! I would think twice

about asking for a Short Synacthen Test - this could put you in a funny position

with the Drs. Your daughter's results are not as low as my daughter's results

were and the short synacthen test still came back as normal and my insistence

that there was still something wrong further confirmed their view that I was

fabricating my daughter's illness.

I took my daughter to see Dr Peatfield - in my case though it was just to

confirm that what I was doing was OK. It is worth having his support behind you

as you will have to continue to self treat your daughter. Dr Peatfield felt that

the NHS would be too frightened of treating a child.

> I wholeheartedly agree with Sheila. Your daughter needs to have an SST

> (short synacthen test) to check her adrenal function and to rule out

> primary or secondary 's –whatever this GP of yours says.

> Do not take no for an answer from your doctor who apparently has no

> knowledge of this very specialist subject.