Re: Awful GP appointment, Adrenals (Pheochromocytoma)

[Guest guest]

Most GP's are useless chin up mate. I know nothing about Pheochromocytoma so

sorry i cant help directly.

You have most probably told me in the past (bad memeory!) but what adrenal

support are you on at the moment? I used to sometimes get a fast pulse just

before my next HC+T3, some people seemed to think it was my body producing a

little bit of adrenaline to help cope until my next dose. If your adrenals arent

supported propperly do you think it could be this at all ?

Steve

>

> Hi All

>

> Does anyone have any experience with: Pheochromocytoma ?

>

> I doubt I have this condition, but GP has suggested I be tested for it.

>

>

[Guest guest]

Hi Steve

thanks for replying

well i'm on 30mg HC. this doesn't seem to be cortisol related. think i've tried

taking 20mg hc an hour before getting up, doesn't make any difference.

chris

>

> Most GP's are useless chin up mate. I know nothing about Pheochromocytoma so

sorry i cant help directly.

>

[Guest guest]

Hi I suspect your GP treated you in such a way because

you have put forward a possible cause for your ongoing symptoms which he has

never heard anything about and he was caught out - and doctors don't like that,

so have a way of tuning the tables and blaming their poor patient. Don't let

this worry you - at least, your doctors now knows of such a possibility and

will no doubt be doing something to find out a bit more about it. I am

glad you gave back as good as he gave - doctors don't expect that. They seem to

forget that they are actually there to get you well. BUT never allow a doctor

to make you feel bad, if you do, then they have won - and believe me, many are

very good at that.

Did he make any suggestions as to how you should get tested or

where to go from here?

Luv - Sheila

oh and he said are you someone who doesn't believe in psychological connection

to ill ness? and i said absolutely i do not believe in this. why he says, well

i say, i've goen down that road with about 4-5 psychiatrists, many drugs, and

got no where. i have got furhter with nutrition and hormones. if you took the

time to read my notes, i said, you'd see this. he was trying to pin this on

anxiety, but it makes no sense, i wake up feeling ok, then get this reaction (i

am not worried about anything), and it gets better as the day goes on. It

really is a joke how little these people know, and how unsympathethic they are.

i have been right about all my conditions: sleep apnea, low testosterone etc.

so not a good day.

I may try 'butcher's broom' to see if that helps, may try florinef, too. can't

go on like this.

chris

[Guest guest]

Hi Sheila

Thank you for your reply, it helps to have someone to talk to as it were. He

was an awful man, bullying someone who is unwell.

Anyway.

> Did he make any suggestions as to how you should get tested or where to go

> from here?

Well, he said " yes, we can do another armfull of tests on you if you want " . very

rude. I asked for electrolytes (he said this was tested in 2009, so a near 3

yr old test should still be valid, huh?!), and he will test for urea i think.

Fasting glucose (waste of time), TSH/thyroid function test (waste of time), and

those tests for pheochromocytoma - this involves 3x 24 hour urinary tests, for

catecholaamines (adrenaline, noradrenaline ) - to see if my body is over

producing adrenaline, which it would be if i have the above condition. It's not

even as if this POTS condition is unheard of in the NHS - there's a dr about 50

miles away from me who has a special interest in it.

It's rubbish to say i had an armfull of tests before, they are so thick. i had

about 15 tests, and i had to ask for triglycerides and cholesterol which were

the ones taht really showed an issue . when i went to belgium, i had about 60

tests done.

Ok so my thoughts are this:

+get the electrolytes tested and see if anything is amiss there.

+if nothing shows up on the catecholamine test, then i assume that it is

something like POTS that i have (see last post))

I will have the blood tests next wednesday, and they need to order the pots for

the test. i'll get them wendesday, maybe before.

Why are GPs so unhelpful, is it any wonder people self treat.

chris

[Guest guest]

ditto everything sheila has said ...don't let the b****** get you down chris

(often easier said than done, i know that!)...

>

> Hi I suspect your GP treated you in such a way because you have put

> forward a possible cause for your ongoing symptoms which he has never heard

> anything about and he was caught out - and doctors don't like that, so have

> a way of tuning the tables and blaming their poor patient. Don't let this

> worry you - at least, your doctors now knows of such a possibility and will

> no doubt be doing something to find out a bit more about it. I am glad you

> gave back as good as he gave - doctors don't expect that. They seem to

> forget that they are actually there to get you well. BUT never allow a

> doctor to make you feel bad, if you do, then they have won - and believe me,

> many are very good at that.

>

[Guest guest]

Thanks Trish

had to take today off work - was so stresed out after yesterday, and then there

was that other news earlir in the week, i just am drained. need to take a bit

of time off.

chris

>

>

>

>

> ditto everything sheila has said ...don't let the b****** get you down chris

(often easier said than done, i know that!)...

[Guest guest]

Just got back from seeing the occupational therapist (OT), she was quite

helpful. She had heard of POTS (postural ortostatic tachycardia syndrome) -

one of the other people she sees was recetnly diagnosed with it, there's a dr at

one of the Birmingham hospitals who diagnosed her with it - a neurologist.

That said, i gather he just told her to have lots of salt and do some exercises

and have support stockings. i don't think he offered medication: in the US,

they would give fludrocortisone, maybe midodrine too, recommend abdominal

binders or support stockings. i don't know why they won't give medication in

this country.

The OT said it might be worth getting tested, but i explained i'd have to change

gp's given how bad mine is. so i could see a neurologist or a cardiologist

about this possible problem. I had emailed a cardiologist who has an interest

in 'POTS' and he said he would see me either NHS, or private. I don't know how

he'd treat, and i am really rather sick of doctors at the moment. i discussed

the use of offlabel meds with the OT and she said they have to be careful with

the ethics of such a situation; i said " oh you mean the ethics of letting

someone suffer when you can give them something that'd help them, but it's not

licensed? " Of course, i know she meant the opposite of this and didn't mean

what i said at all, but i am sick of being ill, so couldn't help myself from

saying it. Similar to when i saw the CFS 'specalist' that pacing sounded very

wishy washy and not very helpful, the same specailist who just said i was

depressed, and the one who ignored low testosterone results.

Me and the OT disagreed over the appraoch of just having to live with these

conditions, and adapt to them -i said i'm not going to just adjust to these

things, having not much of a life, saying on well that's all i can do, i can

function for one hour a day! no way! i told her that's ridiculous. i wasn't

this bad 3 years ago, so i'm not going to settle for this now; i struggled so

hard to escape a load of crap in 2007-8, only to end up unwell with whatever i

have, so not going to settle. i will try every trick in the book.

this OT was going on about maybe it was low cortisol in the morning that was

causing my POTS (she said the NHS only recognised adrenal extremes, so it's

interesting she is aware of cortisol problems); i said i don't think it was

cortisol (as i have tried HC in the morning). but i didn't say about HC as she

doesn't know i'm on it, I did ask about 'aldosterone' though. She said you

can't just keep adding hormones, as it throws something else out, but i disagree

- ideally yeah, of course, there'd be no need to take any of this stuff, but

it's not ideal. life isn't ideal. So if we have to replace something to get

some quality of life... i also got accused of having health anxiety but i

explained my healthh is not that good, and i'm not going to settle, and the

symptom i have at the moment is life limiting; if i could get rid of that, i can

start to live.

i am hoping that butcher's broom might help; it is given for this condition,

though I am not sure I exactly have POTS, but it is the only thing that fits,

and it is not uncommon for people with CFS to have this.

All I need is to get some reduction in symptoms and that will provide many knock

on improvements in other areas and that could swing things back in my favour.

at present, having fight or flight reactions as soon as i try to get going in

the morning, isn't really much fun, and doesn't really help me.

Today i tried drinking the recommended 500ml of cold water first thing, then

resting half an hour before doing anything - this is supposed to help with the

BP, i think it helped a little.

What a performance it all is just to try and get some quality of life. Still

none the wiser if it's adrenal.

chris

[Guest guest]

Hi - sorry you're having such a rotten week. At least the OT sounded as though she was a bit more aware than some doctors - it's just that the whole process is soooo slow, isn't it. Absolutely agree - if you're not well, it's obvious that you explore every option - before you decide to accept a severely limited lifestyle. Definitely sounds like the POTS specialist is worth a go. Have you contact with any other people who have it?I've got a GP's appointment on Monday - dreading it and could really do without the stress. Will let you know how I get on - I'm going to have to explain the whole adrenal/thyroid thing with her. Getting treatment from doctors really shouldn't be such hard work - every time I go, I feel I have to fight my case - you shouldn't have to do this when you're unwell.Anyway, good luck with what you do next. Oh btw, you mention adrenals and I think you visited Hertoghe, didn't you a while ago? Did he have anything to say about the adrenal issues?All best, Alison

[Guest guest]

Hi Alison

thanks for your message

Well this weird symptom, symptom x, is prbably the last major piece in the

puzzle for me: other parts were sleep apnea (treated), and testosterone, also

treated. cortisol, too of course.

>Definitely sounds like

> the POTS specialist is worth a go. Have you contact with any other

> people who have it?

Not yet, no. i've read a few blogs, read a few good articles on it. If it's

not Pots, i don't know what it is. it comes on in the morning and is better as

the day goes on.

>I've got a GP's appointment on Monday - dreading it

> and could really do without the stress. Will let you know how I get on -

> I'm going to have to explain the whole adrenal/thyroid thing with her.

Please let us know how you get on.are you going to tell her everything and about

any improvements you might have had? are you going to write it all down and

hand it to her, or just talk to her?

> Getting treatment from doctors really shouldn't be such hard work -

> every time I go, I feel I have to fight my case - you shouldn't have to

> do this when you're unwell.

I know, I know. it's awful. They've never heard of Ostler:

http://en.wikipedia.org/wiki/_Osler " Listen to your patient, he is

telling you the diagnosis, " - and there was another quote, if you listen even

more carefully, he will likely tell you the treatment.

>h

> btw, you mention adrenals and I think you visited Hertoghe, didn't you a

> while ago? Did he have anything to say about the adrenal issues?All

I saw a colleague of his. The clinic does treat adrenal issues with low doses

of HC, DHEA, and florinef if needed. But of course they test first and

prescribe physiological doses, and monitor it all.

I was asked about the symptoms of low aldosterone, as according to their

interpretatoin, i think i am borderline low on aldosterone. but i have some

aldosterone syjmptoms, and not others.

if you go there you get about 60 tests done (inc urine tests), for about 430

euros (vs 1 test with genova which can cost like 80 pounds eaily), and they

correct what is wrong. it is a refreshing change from this country. someone

emailed me privately once to tell me not to keep mentioning that i was going to

the Hertoghe clinic - for the reason that there are many ill people on the board

who are really struggling and would love to be able to afford to go there. I

was quite hurt and offended by this, for many different reasons. I didn't keep

mentioning it for a start, and also, i've had to borrow to pay for it all, and

have struggled for ages with my health. and do i really need to justify it?

it should also give others hope that there are doctors who can help, so that's a

different way of looking at it, and perhaps if i go there, i can pass on

knowledge to others.

good luck with your appointment, let us know how u get on

chris

[Guest guest]

did you say you had started taking T3? If so, how much

are you taking, how many times a day and when did you last increase it?

Luv - Sheila

All I need is to get some reduction in symptoms and that will provide many

knock on improvements in other areas and that could swing things back in my

favour. at present, having fight or flight reactions as soon as i try to get

going in the morning, isn't really much fun, and doesn't really help me.

[Guest guest]

Hi Alison

I wouldn't sit there explaining the thyroid/adrenal connection

to my doctor and getting stressed into the bargain, but what I would do is to

write her a letter and take it with you on Monday, and tell her that you have put

down everything in writing, including an explanation about the thyroid/adrenal

connection and that you will leave it with her so that she can read and digest,

and then make another appointment with her.

If you haven't asked for the specific minerals and vitamins to

be tested, here is your chance to do so. List in your letter that you would

like the following tested to see whether any of these are low in the reference range

and explain that should any be low, they would need supplementing before the

thyroid hormone can be fully utilised at the cellular level. These are iron,

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

copper and zinc. In case she tries to tell you there is no connection between

these low levels and low thyroid, be one jump ahead of her and enclose the

attached document showing just some of the references to the research/studies

that show there is.

Last, ask that your letter of requests be placed into your

medical notes.

Let us know how you get on, and I hope this will save you lots

of unnecessary stress. Let me know if you received the attachments OK.

Luv - Sheila

Absolutely

agree - if you're not well, it's obvious that you explore every option - before

you decide to accept a severely limited lifestyle. Definitely sounds like the

POTS specialist is worth a go. Have you contact with any other people who have

it?

I've

got a GP's appointment on Monday - dreading it and could really do without the

stress. Will let you know how I get on - I'm going to have to explain the whole

adrenal/thyroid thing with her. Getting treatment from doctors really shouldn't

be such hard work - every time I go, I feel I have to fight my case - you

shouldn't have to do this when you're unwell.

.._,___

2 of 2 File(s)

A17.THYROID AND ADRENAL DYSFUNCTION.doc

LOW MINERALS AND VITAMINS AND THE THYROID CONNECTION.doc

[Guest guest]

Most OT's understand the situation, but then they do not write prescriptions,

handle hypo cases nor do they have any power to make medication recommendations

- mores the pity!!

[Guest guest]

No i'm not on T3 at the moment.

I have everything here, T3, T4, Erfa, Naturethroid, even some T2 (though it's

expired)

I don't really know what to do, or what to take. Just feel rubbish most of the

time.

Chris

>

> did you say you had started taking T3? If so, how much are

[Guest guest]

thing is though, this OT i saw was against taking hydrocortisone, so it wouldn't

have made any difference if they could write prescriptions.

they just expect you to live the life of a sub human, vegetate for 23.5 hours a

day, and pace yourself. repeat, then collapse again. Do this every day . for

the next say 40 years. then die, not having lived as a man or woman should, just

exist.

that's it. that's their treatment. great, huh.

Chris

>

> Most OT's understand the situation, but then they do not write prescriptions,

handle hypo cases nor do they have any power to make medication recommendations

- mores the pity!!

[Guest guest]

Hi Sheila, Steve, thought you'd want to hear that my GP appointment this week was civilised and better than hoped. Yes, Sheila - thanks I did get the attachments. The GP has agreed to do electrolyte tests - which was the main thing I wanted, iron, ferritin, B12 and also to keep an eye on my bone density and send me for a scan. So some progress. She wouldn't do D3, magnesium, copper, zinc - 'not routine'. Will have to retry that another time.I didn't go into a long verbal explanation about adrenals and thyroids. I just made it clear to her that I had given this a lot of thought, had done my research and needed her help. And sending a letter up front did help. So far so good. What a relief.I get the results  next week. Does anyone know where potassium and sodium should be in the range - is it at the top?Thanks again everyone for your help. And sorry I've hijacked your thread again but thought it simplest to keep it in the same subject.What a lovely day, isn't it? Best wishes Alison>> Hi Alison> > I wouldn't sit there explaining the thyroid/adrenal connection to my doctor> and getting stressed into the bargain, but what I would do is to write her a> ._,___>

[Guest guest]

Hi

Alison

You

should tell your GP that you are not asking for your D3, magnesium,

copper and zinc to be tested as " routine " but that you are asking

that these SPECIFIC levels be tested to see whether any of these are low in the

reference range. This is because it is well known (at least, to those who know)

that should any of these be low in the reference range, no amount of thyroid hormone

can be fully utilised at the cellular level. Show your GP the following

references to show the association between these and low thyroid:

Low vitamin D3:

http://www.eje-online.org/cgi/content/abstract/113/3/329

http://www.goodhormonehealth.com/VitaminD.pdf

Low magnesium:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292768/pdf/jcinvest00264-0105.pdf

Low copper

http://www.ithyroid.com/copper.htm

http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm

http://www.ithyroid.com/copper.htm

http://www.rjpbcs.com/pdf/2011_2(2)/68.pdf

http://ajplegacy.physiology.org/content/171/3/652.extract

Low zinc:

http://www.istanbul.edu.tr/ffdbiyo/current4/07%20Iham%20AM%C4%B0R.pdf

http://articles.webraydian.com/article1648-Role_of_Zinc_and_Copper_in_Effective_Thyroid_Function.html

Yes,

Sheila - thanks I did Luv - Sheila

get

the attachments. The GP has agreed to do electrolyte tests - which was the main

thing I wanted, iron, ferritin, B12 and also to keep an eye on my bone density

and send me for a scan. So some progress.

She

wouldn't do D3, magnesium, copper, zinc - 'not routine'. Will have to retry

that another time.

> Hi Alison

>

> I wouldn't sit there explaining the thyroid/adrenal connection to my

doctor

> and getting stressed into the bargain, but what I would do is to write her

a

> ._,___

>