Re: Paediatric Endo appt today!!

[Guest guest]

Hi ,

Your an amazing woman. was it junior docter you saw or the consultant.yOU can always telephone the patients advisory service at the hospital if you are unhappy with your daughters care and see what they say. I think it may be worth going back to gp and asking for a referral for a second opinion which you are entitled too.maybe someone on this website could give you a list of endocrinologists that do acknowledge all the facts about hypothyroidism and then you culd ask your gp to refer yor daughter to them.

Best of luck and kindest Regards, Bernie

From: "m.kidson60@..." <m.kidson60@...>thyroid treatment Sent: Tue, 15 February, 2011 18:28:10Subject: Paediatric Endo appt today!!

Hi All,Well, we have been. What a fiasco that was. The Paed was adamant that there were no clinical signs of hypothyroidism in spite of my Daughter presenting with a very large number of symptoms. She seemed to ignore most of these, or not even make a connection. ---___---

Best wishes,

[Ed]

[Guest guest]

Jeeez, – I am speechless !!! What a stupid cow !! She should be ashamed to call herself an endocrinologist if she does not even know the basic symptoms and tests for Hypothyroidism..... But I could not help grinning as I read on. By the sounds of it, you were brilliant ! Wish I could have been a fly on the wall. At least you got the short Synacthen test out of her ... that helps. Just remember – this test needs to be scheduled for 9am. Please reject any appointment later in the day.

A referral to an ophthalmologist is also a good idea... all kinds of eye conditions can be down to thyroid problems –so it is good to have her eyes checked.

I have picked up a few things that I would like to comment on..... you say your daughter has a `buffalo hump'... this phenomenon is usually a sign for too much cortisol rather than too little. Her adrenal profile however shows an extremely low cortisol output, if I remember correctly. But another possible explanation for a buffalo hump might be pituitary malfunction, which would also cause hypothyroidism. Something like pituitary malfunctioning would also account for a "normal" TSH..... Can you remind me please – what were her TSH and FT4? Sorry, I can't remember now.

I mentioned that my son hasIgA Nepthropathy, that my Mother had Pernious Anaemia and that I was diagnosedwith fibromyalgia.

Right...... and have your son, mother and you ever been tested for hypothyroidism? I do not know much about IgA nephropathy in particular, other than that it is yet another autoimmune condition and it can run in families. But I do know that kidney disease, pernicious anaemia as well as Fibromyalgia more often than not go hand in hand with Hypothyroidism. By the sounds of it, your whole family might benefit from thyroid treatment.... seriously. Have you read "Hypothyroidism, Type 2" by Mark Starr M.D. yet by any chance? I think you should get that book.

OK – so you are doing the FT3 and antibodies privately – thank God for your initiative. Your kids have sadly hit the nail on the head – why bother with the NHS? – but unfortunately even going private does not always guarantee success. Thank heavens for doctors like Dr. Peatfield or Dr. Skinner, but they can't take on the whole of the hypothyroid UK population singlehandedly. There are probably Millions of patients out there who are trusting their GPs to get it right and who are so badly let down by them.... yet most of them don't even realize it.

I am so sorry that you had such a disappointing experience yesterday, but I feel proud that you kept your head and put her straight – even if she was having none of it outwardly, it will have dented her confidence and deep down she might even have shook in her boots a bit. The line about her being the endo who has studied in Birmingham for 2 years says it all.... Freud would have had something to say about that <g>

On a personal note – I had a good laugh today. I have changed my private health insurer and as part of the exercise had an appointment at the surgery today to take a look at my medical notes - I always wanted to know what kind of notes my GP was putting in my file. It was all pretty straight forward, but when I got to the part of my hypothyroidism diagnosis it said in the penultimate notes before I got diagnosed: "clinically depressed, scored xxx points on form xwz. (which is some silly NHS form that I had to fill in and you score points which will "prove" clinical depression – utter rubbish!). Offers of Prozac and counselling refused. Pat. thinks she is hypothyroid, previous TFT normal" ... then he ordered a new set of blood tests on my insistence – which came back with all the figures in the red, including autoantibodies <bg> The next entry read "Hypothyroidism confirmed, 25 mcg Levothyroxine daily – retest in 4 weeks" ... it gave me great satisfaction to read this, but not as much as reading a follow-on referral letter to an endo, which started with the words : "Thank you for seeing this nice lady, who has diagnosed herself hypothyroid and I have started her off on 25 mcg Levothyroxine, blah, blah ...... ;o))

It's been a disappointing day for you and your daughter, , but you have still achieved a great deal and you have stood your ground.... If all else fails, you might want to go and see Dr. Peatfield, but let's first see what the tests will throw up.

Love,

[Guest guest]

Thanks ,

You, Sheila & this group gave the confidence to challenge what was being said.

That and the knowledge that my daughter is getting worse by the day. I felt

quite confident and surprised myself!

Her TSH level was: 1.92 (0.25-5.0)

free T4 16.3 (12-25)

I am very concerned that the paediatrician did not take the headaches and light

sensitivity seriously. It is unbelievable that we have come away with no help

for this. Even my sister is appalled. As you said in a previous message we

really are at breaking point as a family, we can hardly carry on & I know that I

am really, really struggling to cope.

Non of us have ever been tested for hypothyroidism. My dear Mother is no longer

with us, but, I have spoken to my son who has not yet decided if he wants to

have the blood test done. He does think that he probably does need the thyroid

hormone, but, he has to decide when to do it. I know that I need thyroid hormone

and I will get myself tested later, when my daughter is more sorted. I have

added in extra adrenal support for myself at the moment as things are so

stressful at home.

Do you know if the following may be related? I bought some Serenity cream for

myself to control hot flushes. I read that it can be used for teenage girls.

Although, my daughter is showing almost no sign of going into puberty, I thought

that I would try it. I was stunned by the effect - overnight she turned into my

lovely daughter and was much more relaxed and calmer. I have stopped giving her

the cream as I didn't know what I was doing and didn't want to skew any results.

There must be something going on here.

On the subject of puberty, the endo today wanted to see for herself if my

daughter was showing any signs of puberty and asked to take a look! When she

looked downunder she suddenly saw some p hairs that both my daughter and myself

know do not exist. She announced that all was OK and that puberty was well under

way. I didn't know what to say.

Things with my daughter do seem to be a conundrum - with mixed symptoms of

different things - like the buffalo hump and the surprisingly low cortisol. I do

wish that we could get to the bottom of it. I did mention pituitary function,

especially with the meningitis - she looked at me and then dismissed it.

I had better buy myself Mark Starr's book.

I agree about the private bit - I am not sure that this hospital is the right

place, but, at least they are prepared to run the tests that I ask for - now I

wonder if they can do pituitary tests - I will ask tomorrow.

> but I feel proud that you kept your head and put her straight – even

> if she was having none of it outwardly, it will have dented her

> confidence and deep down she might even have shook in her boots a bit.

> The line about her being the endo who has studied in Birmingham for 2

> years says it all.... Freud would have had something to say about that

> <g>

Thanks - I am glad that you are proud of me - it sometimes seems as

though I am always paddling lone canoes! When the endo started talking about her

training, I knew that I was hitting some raw nerves! She even said that she

could talk to the endo who has just retired as he has years and years of

experience - my thought was no thanks, he saw my daughter years ago and never

sorted anything.

> follow-on referral letter to an endo, which started with the words :

> " Thank you for seeing this nice lady, who has diagnosed herself

> hypothyroid and I have started her off on 25 mcg Levothyroxine, blah,

> blah ...... ;o))

>

Good to hear this - no doubt no one apologised to you for getting

things wrong!

>

>

> It's been a disappointing day for you and your daughter, , but

> you have still achieved a great deal and you have stood your ground....

> If all else fails, you might want to go and see Dr. Peatfield, but

> let's first see what the tests will throw up.

I am feeling a bit raw. I see that Dr Peatfield has surgeries very near to where

I live, so at least that is a possible option one day. The tests will be very

interesting.

x

[Guest guest]

, I am absolutely appalled at the lack of knowledge this

endoprat has about the workings of the greater thyroid system. She has

obviously trained ONLY in diabetes and should not be dealing with patients with

thyroid problems. I would wait and see what the fT3 and antibodies results show

before doing anything else.

I would then write a letter of complaint to this idiot,

highlighting all of your daughters symptoms and signs (check these on our web

site www.tpa-uk.org.uk under

'Hypothyroidism'. You can check the 'signs' yourself and list these too and

include the buffalo hump which is a sign of a hormonal imbalance - see http://symptoms.wrongdiagnosis.com/cosymptoms/buffalo-hump/hypothyroidism.htm

.. I would point out to her the difficulty your daughter has with swallowing and

about light sensitivity being one of the lesser known symptoms of hypothyroidism

http://ezinearticles.com/?Commonly-Known-and-Lesser-Known-Hypothyroid-Symptoms & id=2052129

If her private blood tests show that she has thyroid antibodies

and/or low levels of free T3 - mention these and remind her again that is T3

her body needs and that antibodies set about destroying the thyroid gland

completely over time, and that the more it becomes destroyed, the less able it

is to secrete the thyroid hormones required and such folk need thyroid hormone

replacement. I would ask her to cite references to the medical research that

shows having high levels of thyroid antibodies and a normal TSH plus many of

the signs and symptoms of hypothyroidism meant that your daughter has no

thyroid problems.

I pick up that this doctor is frightened of treating your

daughter as she knows she does not have the knowledge or the skills to be able

to do so, and that is why you had such a negative response.

I would write to her for no other reason other than to get it

out of my system and to let her know she should be doing further training into

the functioning of the thyroid before being let loose on children or anybody else.

, even you know more about thyroid disease than she does.

I would certainly ask your GP to refer you elsewhere, but to

somebody who knows about thyroid disease this time. I will send you my list of

doctors.

It will be interesting to hear what an ophthalmologist will have

to say as many can diagnose other problems that are going on such as hypothyroidism.

Luv - Sheila

My son agrees with me that we can'ty carry on and that his sister is

regressing, both children ask me why are we bothering with the NHS when they

won't listen, why don't I just go private and do things myself!

Sorry for the length, but, it has been a difficult day and I look forward to

hearing any advice.

Oh, I forgot - she is referring her to an opthalmologist about her eyes and the

headaches!

Best wishes,

[Guest guest]

Hello ,

Her TSH level was: 1.92 (0.25-5.0)free T4 16.3 (12-25)

Thanks for the reminder. Her TSH is nearly 2, which for a young girl in particular is in my view a bit high. But no NHS doctor would agree with that. Her FT4 looks ok-ish, but again, especially for a young person it should be nearer the top. But both those figures tell little, they have to be seen in conjunction with the FT3 and thyroid antibodies. Basically – if your daughter had a positive count of autoantibodies, this would show two things – that she suffers from Hashimoto's (because the presence of positive TPO or TgAB alone would be diagnostic for that) and it would also mean you could not trust the FT figures (FT3 as well as FT4), because positive AA's (autoantibodies) might have erroneously pushed up those figures. This can happen when the AA's attack the thyroid gland and destroy a little more of the tissues. When this happens, the thyroid gland pushes out an excess of thyroid hormones into the blood stream, which will falsify the figures.

But not everyone who is hypothyroid will also have positive AA's – so the absence of them would not be proof that she is not hypothyroid. It's a lot more complicated than that.

I am very concerned that the paediatrician did not take the headaches and lightsensitivity seriously. It is unbelievable that we have come away with no helpfor this. Even my sister is appalled. As you said in a previous message wereally are at breaking point as a family, we can hardly carry on & I know that Iam really, really struggling to cope.

I could not agree more. How can a woman like that be put up as head of a department?? God help our children if this is the extent of her knowledge.

Non of us have ever been tested for hypothyroidism. My dear Mother is no longerwith us, but, I have spoken to my son who has not yet decided if he wants tohave the blood test done. He does think that he probably does need the thyroidhormone, but, he has to decide when to do it. I know that I need thyroid hormoneand I will get myself tested later, when my daughter is more sorted. I haveadded in extra adrenal support for myself at the moment as things are sostressful at home.

Whilst I can fully understand your son's reluctance to be tested, you should do all you can to persuade him to get tested. The thing with (any) autoimmune disease is that it predisposes us for developing another. Making sure that we have sufficient thyroid hormone in our bodies is the best insurance policy for warding off further illness. I would imagine that your son has been through a lot and probably has to take medication for his kidney disease; so the thought of yet another pill is probably less than appealing. But perhaps you can explain to him that thyroid hormone is not a "drug" in the usual sense of the word, but a hormone that is vital for the proper functioning of the body – something that the body would produce itself, if it could.... I am not saying that his thyroid function must be low, but there is a good chance that it is, and if it were, then he would need thyroid hormone like he needs the air to breathe.

I do not know if high blood pressure is part of your son's kidney condition, but if it were, you might be interested to hear what Dr. Starr says in his book about kidney disease (quote):

A diminution of blood flow to one or both kidneys elevates blood pressure. This was initially demonstrated by gradually clamping off blood flow to dogs' kidneys. The lower the blood flow, the higher the elevation in blood pressure.

Dr.(Broda) believed decreased blood flow to the kidneys due to hypothyroidism was the underlying cause of most high blood pressure. Eighty percent of the patients entering his study groups with a prior diagnosis of high blood pressure had they pressures normalize with thyroid therapy alone. Only a few of the study group patients required medication other than thyroid hormones to help control their pressure. Decreased blood flow, due to narrowing of the kidney's arteries by atherosclerosis (prior to beginning thyroid hormone), was probably the reason why the high blood pressures persisted in the patients who failed to respond. The findings from the Graz autopsy studies compared with the autopsied patients' medical histories supported Dr. ' conclusion. Dr. never claimed he was able to reverse established atherosclerosis. A number of previously listed studies have shown its progression can be halted by correcting hypothyroidism. (unquote)

On a personal note – I can confirm that Armour thyroid medication does indeed normalize high blood pressure. My niece is hypothyroid and she self treats. Since taking Armour thyroid her BP has come down permanently from systolic values of nearly 200 to normal values of 130. She is only 38 yo and has had high BP for years. Since taking thyroid meds she no longer needs her blood pressure medication.

As for yourself....please check yourself sooner rather than later – if you need thyroid medication (and it sounds as if you do) then you won't believe the difference it will make to your life. Don't wait until everybody else is sorted out. You need all your strength to sort your children out – it's no good working yourself into the ground before you pick up yourself up from the ground. Please do those tests as soon as you can. If you already take adrenal support, your system will be ready for starting on thyroid if need be. If you can't face battling with your doctor, consider self treating. When I went to see Dr. Peatfield he checked me over and said I was hypothyroid. I stammered ... but, if I self-treat, what will my GP say? – to which he replied – and I quote - `don't bloody tell him then!' <g> It all worked out fine in the end, because I needed to condition my adrenals first before starting on medication, and I was fortunate that my subsequent blood tests came back positive, but if it had not, I would have self treated with Armour thyroid anyway.

Do you know if the following may be related? I bought some Serenity cream formyself to control hot flushes. I read that it can be used for teenage girls.Although, my daughter is showing almost no sign of going into puberty, I thoughtthat I would try it. I was stunned by the effect - overnight she turned into mylovely daughter and was much more relaxed and calmer. I have stopped giving herthe cream as I didn't know what I was doing and didn't want to skew any results.There must be something going on here.

Just as a matter of interest – are you using Serenity cream from Wellsprings (via Guernsey) or the other Serenity cream that comes direct from the US? There was a recent thread on here about Serenity cream, which might interest you (does anyone know how to find that thread for ? – I am hopeless at doing a search). It is very interesting that a few days application should have had such a dramatic effect, but it is obviously something she is missing from her own chemistry. I am sorry, I can't comment on whether it would be suitable for your daughter, but perhaps you will find some information in here http://www.progesterone.org.uk/index.php?main_page=page & id=45 or email customer services and address it to ` Graves, Chief Clinician, Health Science/Serenity `.

Good to hear this - no doubt no one apologised to you for gettingthings wrong!

Actually my GP had the decency to apologize for not believing me. Ever since he's been putty in my hands <bg>

I am feeling a bit raw. I see that Dr Peatfield has surgeries very near to whereI live, so at least that is a possible option one day. The tests will be veryinteresting.

I don't think you would regret seeing Dr. P. – don't know what he would charge to see a whole famil, but you could probably all three do with a consultation with him.

I'm looking forward to your daughters results.....

Love,

[Guest guest]

Dear ,

The bloods were taken yesterday, along with some other tests - see below! Once

we have these results we will have a better idea.

I could not agree more. How can a woman like that be put up as head of a

> department?? God help our children if this is the extent of her

> knowledge.

I dread to think. I have a friend whose son is very ill, she has put in a

complaint to the PCT as they are saying that there is nothing wrong - they have

now withdrawn all help. Even the head teacher at this child's school is

disgusted!

> Whilst I can fully understand your son's reluctance to be tested,

> you should do all you can to persuade him to get tested. The thing with

> (any) autoimmune disease is that it predisposes us for developing

> another. Making sure that we have sufficient thyroid hormone in our

> bodies is the best insurance policy for warding off further illness. I

> would imagine that your son has been through a lot and probably has to

> take medication for his kidney disease; so the thought of yet another

> pill is probably less than appealing. But perhaps you can explain to him

> that thyroid hormone is not a " drug " in the usual sense of the

> word, but a hormone that is vital for the proper functioning of the body

> – something that the body would produce itself, if it could.... I am

> not saying that his thyroid function must be low, but there is a good

> chance that it is, and if it were, then he would need thyroid hormone

> like he needs the air to breathe.

I hear what you are saying and thank you for your concern. For myself

I am just debating on whether to see someone who specialises in bio-identical

hormones as I am menopausal and have a few issues. At least I know that I can

get bloods taken easily at the local private hospital. The big problem with the

children is finding somewhere that will take bloods without a referral from your

GP. I have only found one place where we went yesterday and it is a 3 hour drive

each way. I am working on my son and if my daughter's results definitely show

something, then I am sure that he will be happy to have bloods taken.

> I do not know if high blood pressure is part of your son's kidney

> condition, but if it were, you might be interested to hear what Dr.

> Starr says in his book about kidney disease (quote):

This is very interesting. High blood pressure only seems to occur when he has

active infection/deposition of the IgA. I am not completely happy with this

though and I definitely need to sort things out for him.

> On a personal note – I can confirm that Armour thyroid medication

> does indeed normalize high blood pressure. My niece is hypothyroid and

> she self treats. Since taking Armour thyroid her BP has come down

> permanently from systolic values of nearly 200 to normal values of 130.

> She is only 38 yo and has had high BP for years. Since taking thyroid

> meds she no longer needs her blood pressure medication.

Now this is interesting!

>

> As for yourself....please check yourself sooner rather than later –

I will .

> I stammered ... but, if I self-treat, what will my GP say? – to

> which he replied – and I quote - `don't bloody tell him

> then!' <g>

I like this, I may do this as well depending on test results!

>

> Just as a matter of interest – are you using Serenity cream from

> Wellsprings (via Guernsey) or the other Serenity cream that comes direct

> from the US?

Thanks , I bought some from Wellsprings, then saw the posts and bought

some of the organic cream from the US site - although it came from Sweden! My

daughter's reaction was with the Wellsprings cream. As we only use organic

toiletries etc. anyway, I preferred the organic cream. Good idea to contact

them, I will do that.

> Actually my GP had the decency to apologize for not believing me. Ever

> since he's been putty in my hands <bg>

I'm looking forward to the day when mine is as well!

I will post yesterday's experiences in my reply to Sheila - it was a much more

positive day!

Best wishes,

x

[Guest guest]

Hi Bernie,

Thank you. The person we saw is new to the PCT and has replaced a male

Paediatrician who has just retired. So not sure how she would be classed. This

Paediatrician who has just retired and was supposed to be the endocrinology

specialist saw my daughter years ago about her UTI's and he didn't do a thing

either!

yOU can

> always telephone the patients advisory service at the hospital if you are

> unhappy with your daughters care and see what they say. I think it may be

worth

> going back to gp and asking for a referral for a second opinion which you are

> entitled too.maybe someone on this website could give you a list of

> endocrinologists that do acknowledge all the facts about hypothyroidism and

then

> you culd ask your gp to refer yor daughter to them.

I am going to wait until I have my daughter's results before I do anything, then

I will be sorting them out!

Best wishes,

x

[Guest guest]

Hi Sheila,

Thank you for this. You have amde me think about the consultation and thinking

back I can see now that she had absolutely no idea of any potential issues. I

think that this explains the looks she kept giving me when I was mentioning

Cushing's and 's and pituitary issues. The looks now seem to me to be one

of 'this is out of my specialist knowledge'

> I pick up that this doctor is frightened of treating your daughter as she

> knows she does not have the knowledge or the skills to be able to do so, and

> that is why you had such a negative response.

>

> I would write to her for no other reason other than to get it out of my

> system and to let her know she should be doing further training into the

> functioning of the thyroid before being let loose on children or anybody

> else. , even you know more about thyroid disease than she does.

I am really looking forward to writing this letter!!!

>

> I would certainly ask your GP to refer you elsewhere, but to somebody who

> knows about thyroid disease this time. I will send you my list of doctors.

>

Thanks I have the list now.

> It will be interesting to hear what an ophthalmologist will have to say as

> many can diagnose other problems that are going on such as hypothyroidism.

Yes, that was at least something positive.

Anyway, to talk about yesterday.

We saw a Dr who is not an endocrinologist. He took one look at my daughter and

said that she looks as though she has Cushing's! He was utterly shocked that

no-one was doing anything, not only for this, but also for all the pain that she

is in in her joints etc. He thinks that there may even be some arthritis. He did

a much better examination, even getting a colleague to look at her buffalo hump.

He checked her blood pressure and pulse lying down and standing up and said that

the response was not normal and that he was concerned about the capacity of her

heart. He did some muscle testing on her legs - he said that some muscles if you

have Cushings are weak whilst others are stronger in the legs - my daughter

presented with the muscle discrepancy if you have Cushings. He didn't understand

the saliva test results as they contradict how my daughter is presenting.

Anyway, we have agreed on a plan of action - first of all he is writing a

letter, which he said will not be very nice and will be controversial, as he is

disgusted! Then we are running various blood tests - full thyroid panel, urinary

hormone panel, pituitary antibodies, full immunology to look to see what other

anitbodies she has and Lyme disease.

These results are going to be very interesting!!

How can a Dr who is NOT an endocrinologist see all of this!

Best wishes,

x

[Guest guest]

Dear ,

How can a Dr who is NOT an endocrinologist see all of this!

Indeed!! Probably because he is not blinkered and conditioned by rules and regulations and by fear that he might heap the wrath of the RCP and BTA upon his head.... This doctor did what every good doctor should do – LOOK AT THE PATIENT.... an art long forgotten.

From your description of the assessment by this fantastic doctor I would guess that you now have to look at your daughter's pituitary gland, although her adrenal profile is still a mystery. The most common cause for causing Cushing's are pituitary adenomas. The following is a good website to explain things, including tests that could be done.

http://endocrine.niddk.nih.gov/pubs/cushings/cushings.htm#causes

The short synacthen test – if you want to go ahead with it - should also help checking out the pituitary function, although I would suggest that you see a different endo for the interpretation. That wretched woman endo wouldn't be able to see the wood for trees. An SST (Short Synacthen Test) can diagnose Cushing's as well as 's. The following might be of help:

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

Normal response:

• Basal cortisol in the reference range

• Cortisol increase above basal >=170 nmol/l

• Peak cortisol > 530 nmol/l

Pituitary patients:

0 and 30 min cortisol is usually sufficient.

Basal cortisol > 450 nmol/l is highly suggestive of intact HPA axis. (me: HPA=Hypothalamus-Pituitary-Axis)

If cortisol is < 350 nmol/l at 30 min then there is no need for ITT as this is indicative

of deficient HPA. (me: ITT=Insulin Tolerance Test)

If cortisol is > 600 nmol/l at 30 min, then ITT probably not required for this is indicative of intact HPA .( specificity of 96% Eur J endo 1998)

Using the 30 min cortisol value> 600 nmol/l provides a suitable substitute for ITT and

this will decrease the number of ITT performed.(Clin Endo 1996).

Do ITT or alternative tests if cortisol at 30 min 350-600

Well done, , for finding such a gem of a doctor, even if you had to drive 6 hours to do the round-trip. Hopefully the tests that he has initiated will give you a much better idea of what is going on. I admire greatly your initiative and commitment. Who is running all those tests, btw? I hope you will not have to do all this privately – they should all be done on NHS. It is bad enough that you have to drive half way through the country to find answers and get your daughter diagnosed, you should not be penalized financially as well for the incompetence of some doctors.

I bought some from Wellsprings, then saw the posts and boughtsome of the organic cream from the US site - although it came from Sweden! Mydaughter's reaction was with the Wellsprings cream. As we only use organictoiletries etc. anyway, I preferred the organic cream. Good idea to contactthem, I will do that.

I did the same ) – mine came via Sweden too, but originated from the US. I think they might circumvent some regulations by sending it via Sweden. I get the feeling that the Serenity does help my night sweats and (still) occasional flushes, but it's early days, I only started a couple of weeks ago. Btw – I used to suffer from hot flushes every hour on the hour for 10 long years and was told by my GP it was the menopause.... it was not – it was undiagnosed Hashimoto's and adrenal fatigue! Oh, nearly forgot.... if the Serenity Cream were suitable for your daughter, please do not use it on her until all the test have been done, in particular the hormonal blood tests and the SST. Any kind of exogenous hormone would influence and falsify the results.

Can't wait for hearing about all your daughter's results – I think there is now a light at the end of the tunnel ))

Love,

[Guest guest]

Dear and All,

Thank you for this. It is very difficult to know what to think until we have

some test results. The adrenal saliva profile is a mystery and I am wondering if

there could be a false negative result in certain cases.

I have been doing some research and I have found St Bart's in London who seem to

be specialists. Here is their website:

http://www.bartsandthelondon.nhs.uk/endocrinology/about_us.asp

Does anyone have any experience of them? I see that they treat more children

with Cushing's than anywhere else in the UK.

I don't know about the NHS tests - my daughter is asking do we have to go back!

Thankyou for your compliments. I'm afraid though, that I am paying for the tests

and the consultations. I suppose, that I am desperate for my daughter to be well

as any Mother would. I have been fighting with the NHS for so long and got

nowhere, that I feel that the only way to get my daughter well is to pay for it.

I know that it isn't right.

Depending on the test results, I may be writing a stinking letter to my GP and

the endo paed backed up by the Dr we saw yesterday demanding an immediate

referral to St Bart's.

I get the feeling that the Serenity does help my night sweats

> and (still) occasional flushes, but it's early days, I only started

> a couple of weeks ago. Btw – I used to suffer from hot flushes every

> hour on the hour for 10 long years and was told by my GP it was the

> menopause.... it was not – it was undiagnosed Hashimoto's and

> adrenal fatigue! Oh, nearly forgot.... if the Serenity Cream were

> suitable for your daughter, please do not use it on her until all the

> test have been done, in particular the hormonal blood tests and the SST.

> Any kind of exogenous hormone would influence and falsify the results.

Yes, I stopped the cream for my daughter after about a week, as I thought that

it would probably skew any results. The cream does seem to help my hot flushes

as well, though I have found taking high doses of Vitamin K helps enormously.

>

> Can't wait for hearing about all your daughter's results – I

> think there is now a light at the end of the tunnel ))

I think so too and so does my daughter. I can tell that she feels happier

already.

BWs x