Re: Disasterous GP appointment

[Guest guest]

Hi Jess

firstly let me say bless you, i cried when reading this , i've been through it

all even down to the cfs diagnosis. I've suffered 8 years like this.

My bloods showed normal all the way through and it wasn't until i had a scan on

my thyroid what was exactly happening, actually got the same going on with my

youngest daughter now.

Can you ask to see an endo?

I only know what i have suffered but the story reads the same as me. I was given

thyroxine but still didn't get well on that so now i'm taking T3 and am starting

to get my life back. I've spent the best part of my 30's feeling the same as

you, now i'm 40 its time to make a stand. My gp also thinks i'm a mentally ill

hypochondriac and now i'm demanding tests i'm adding fuel to his fire but i

don't care , i'm so close to being well i'm not standing for his insults and

tuts!!

I have written a letter of complaint now about treatment in the last 8 years and

that i don't wish to be left to rot!

If you've got it in you fight!! and there are so many amazing people on here

that will help you.

Big hugs to a fellow sufferer

love Sha xxxxxxxxx

p.s at a tsh of 2.5 i couldn't get out of bed i was very poorly , dry eyes no

energy etc etc

--- In thyroid treatment , " wjess19 " <jess.linden.white@...>

wro

> Jess

>

[Guest guest]

Hi Jess

Sorry to hear of your experiences with your GP. It won't make you feel better

to know that you're not the only person to have been treated like this.

It is good you have an appointment with Dr Peatfield, he is excellent and I'm

sure will do his very best to help you.

You mention you have some test results, what are they please - the exact

results, with units, and reference ranges?

The dry eye may be thyroid related and / or vitamin A related. If you look at

this link:

http://www.livestrong.com/article/408798-dry-eyes-from-a-vitamin-a-deficiency/

I have read that people with hypothyroidism cannot convert betacarotene to

vitamin A very well, so it is possible that there could be a connection there -

perhaps you are low on Vitamin A because you cannot convert it well because of

hypothyroidism - could that be the thyroid link? Oh Vitamin A deficiency is

linked to reduced resistance to colds, too

http://www.healthsupplementsnutritionalguide.com/vitamin-deficiency-symptoms.htm\

l#Vitamin%20A

You can buy Vitamin A quite cheaply - I would go for preformed Vitamin A - this

is a good brand:

http://www.amazon.co.uk/-Labs-Vitamin-10000-gels/dp/B002X9X13O/ref=sr_1_8\

?ie=UTF8 & qid=1314360651 & sr=8-8

FT4 of 9.9 is too low, and TSH of 2.55 is not good either.

Your GP is useless - seems to be fairly typical.

> I told her I still felt awful and she asked about my home and work life

obviously trying to find some reason for me to be stressed or something. I said

other than being ill I was very happy, I'm a happy person. She just said it was

in my head basically and offered me antidepressants and anti anxiety or therapy.

I was shocked and really upset but not entirely surprised, I think my

experiences echo many on this board.

It isn't all in your head at all - don't listen to such rubbish; no one on this

board will tell you it's in your head. You know yourself, trust your own

instincts. You know what is normal for you, whether that's from a distant

memory, or glimmers of health. And if it isn't thyroid, it isn't going to be -

in my opinion - a prozac deficiency. There are other hormones too, some people

might need other hormones or adrenal steroids or certain nutrients. If any of

these are deficient, it'll mess the whole lot up. It may even be a combination

of things - it doesn't just have to be low thyroid, but low thyroid and x, y, z,

or low thyroid caused by x,y,z.

> I have a diagnosis of possible CFS from a complementary doctor from sheila's

list and he worked with thyroid uk for 10 years and he said although my levels

are a bit out he thought my symptoms were too severe to be caused by only a

slightly raised level. The more I talk to doctors I think maybe it isnt my

thyroid and I'm just clutching at straws... But the more I see people on here

talking about stiff, I think maybe it's possible... I'm so confused.

CFS isn't really a diagnosis, i don't think. And how can you have a diagnosis

of possible CFS? Isn't that like saying someone's possibly alive? " oh he might

be alive, he might be dead, i'm not sure. " " oh he might have a cold, or he

might have a broken leg, or he might be depressed - he might be healthy, too - i

know i'll put possibly every medical condition down i know of in his notes " ?

I'm sorry, you have something, or you don't. I'd steer clear from that doctor.

How on earth can any doctor say it's not your thyroid when he hasn't even

trialled you on meds? There is only one way to find out if it's thryoid.

Ridiculous, sorry.

>my symptoms were too severe to be caused by only a slightly raised level

Well what else did he test, trial etc? How does he know what is your optimal

level of thyroid? Look for instance what Myhill says:

http://www.drmyhill.co.uk/wiki/Hypothyroidism

" There is another problem too which is that the so-called " normal range " of T4

is probably set too low. I know this because many patients with low normal T4

often improve substantially when they are started on thyroid supplements to

bring levels up to the top end of the normal range. Indeed Dr Skinner, who is a

consultant virologist at Birmingham, has shown how many patients with CFS have

low normal levels of thyroxine (T4) and do well when their levels are increased

to average levels. The laboratory I use has a normal range of 12-22 pmol/l and I

am finding many levels coming back at 12-15. In these patients there is an

indication for trying T4, especially if symptoms suggest this. I emphasise that

this is a trial - it does not commit one to thyroid hormones for life. "

Go with *your* instincts. The only sure way to find out if it's thyroid is to

trial treatment. It would be best if you could do this with someone like Dr

Peatfield *if he deems this necessary*. In the meantime you could perhaps

research your other symptoms - have you had an adrenal saliva test done? a 24

hr urinary thyroid test? How's your diet, do you supplement etc?

Can I point you to this questionnaire?

thyroid treatment/files/MEDICAL%20QUES\

TIONNAIRES/ (Hertoghe questionnaire) - what do your symptoms match?

You say you had pig flu (I refuse to call it swine flu - just a severe sounding

name to make us scared whilst they sell billions of pounds worth of tamiflu),

how was that treated? Flu could have been devastating to your adrenals?

Interesting how you say you got worse after that? Were you ok before that?

Please tell us your symptoms and what the Hertoghe questionnaire says, and also

provide any lab results

Best regards

Chris

[Guest guest]

Hello Jess,

I am so sorry about what is happening to you and the lack of support from your

GP -who seems to have made their minds up over what is wrong with you without

really listening to you.

I have been through exactly the same process as you. I was diagnosed with CFS

by a NHS specialist consultant at my local hospital and that seemed to be that

as far as the medics were concerned as everything was then associated with being

the CFS. My TSH was just like yours and I felt really really ill and in so much

pain with total exhaustion. I was on painkillers, anti dierectics, laxatives and

they were consdering blood pressure tablets (even though I had never had a blood

pressure porblem before being ill)

Eventually fearing i would loose my home thorugh being too ill & off work I sort

private treatment just as you are now -well done! Am afraid you will have to

fight back hard -once that label of CFS is given it's hard for NHS doctors to

see beyond it. I was eventually 'formally ' diagnosed as hypothyroid as well as

CFS ( hmm I thought one excluded the other but no the medical profession said

that the hypothyroidism was a result of CFS!!!).

Anyway to cut a long and windiy story short -I found with adrenal support and

dessicated thyroid I could become almost hundred percent well again. Am trying

to think of the name of the American doctor who wrote a great book (actually

about fribromalgia) -sorry can't remember....anyone else remember? In this book

he argues that CFS patients usually required adrenal as well as thyroid support

and with this combination many of us get well. Of course I can't speak for your

needs but its worth checking out. Dr P of course can do this very nicely for you

and am sure will be a great help. In the meantime you could try making sure

that all your vitamins, including vit D are at optimal levels. I was prescribed

selenium it didn't help me but everyone is different.

Just to encourage you I now work full time and apart from a weight problem

(which am working on) am very well and fairly active.

Big hugs and please keep in contact,

Ange

xx

>

[Guest guest]

Dr. Lowe? http://www.drlowe.com/geninfo/explain.htm

>

Am trying to think of the name of the American doctor who wrote a great book

(actually about fribromalgia) -sorry can't remember....anyone else remember? In

this book he argues that CFS patients usually required adrenal as well as

thyroid support and with this combination many of us get well. Of course I

can't speak for your needs but its worth checking out.

[Guest guest]

HI,

I am really sorry you are having such a hard time being heard by your GP. If

this were me, I would write a letter to your GP practice, saying that you are

very unwell, list all your symptoms andhow they are affecting your life, and say

that you want them to do comprehensive blood tests to determine what is wrong.

Say that you are not prepared to be dismissed anymore. Also ask in the same

letter that they send you a copy of their complaints procedure by post. In

doing this you are not threatening to make a complaint, merely making them

realise you are serious about being treated properly. I would send this to the

practice manager and ask to see the most senior GP at the practice to discuss

the matter. I'm not sure that I think actually making a complaint does any

good, but hopefully implying that you are preapred to go that far will be enough

to get you the treatment you deserve.

It has taken me a year of having to keep going back to the GP about extreme

tiredness for her to take me seriously and run comprehensive blood tests, which

she only did to 'get me off her back' I'm sure but which has thrown up raised

rheumatoid factor (on top of hashi's) and I finally have a referral to a

specialist. I only wish I had been firmer at the start and then maybe I

wouldn't have spent the last year feeling so crap.

By the way, dry eyes, joint pain and extreme tiredness could be related to

elevated Rheumatoid Factor (a marker of rhuematoid arthritiss etc) as well, as I

have just personally found out, which is why it's important to get your doctors

to do comprehensive testing if you possibly can before self treating.

Wishing you all the best.

Nadia

From NHS website:

If you disagree with the way your GP wants to treat you, or you're unhappy about

the service provided by your GP surgery, tell them openly.

However, if you feel unable to do so or you're unhappy with the response you

receive, you may wish to make a complaint.

All GP surgeries should have a written complaints procedure, and you will find

this at reception or on the practice website.

As a first step, speak to the practice manager. You can also complain to the

practice in writing, or by email.

If this doesn't resolve the problem, or you'd rather not raise the issue

directly with the practice, you can complain to the local primary care trust

(PCT).

[Guest guest]

Hi Jess, well you are having to go throw the mill, but you are among friends here and we no how you feel, the TSH is not a good test as it is for the pituitary gland and it is slow to tell what is happening to the thyroid. having said that it should be below 1.0 as you don`t need this hormone to be signalling at all. the T4 is to low should be above the middle of range. if i were you i would write down everything i could remember, symptoms etc: keep a list day to day and wait until you see Dr P. Angel.