M.E. is apparently the new contender for me, so bad I could laugh!

[Femme1]

Visited doctor today with my blue horizon results:-

THYROID PROFILE 2

TOTAL THYROXINE(T4) 97 nmol/L 59 - 154

THYROID STIMULATING HORMONE 2.59 mIU/L 0.27 - 4.2

FREE THYROXINE 13.7 pmol/l 12.0 - 22.0

FREE T3 4.0 pmol/L 3.1 - 6.8

IMMUNOLOGY

THYROID ANTIBODIES

Thyroglobulin Antibody 18.8 IU/mL 0-115(Negative)

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 7.7 IU/mL <34 (Negative)

Method used for Anti-TPO: Roche Modular

Gave the massive list of my symptoms, and he said there is NO PROBLEM WHATSOEVER with my thyroid, there may be an issue in later years, but nothing now?????

One of my previos rounds of blood taken last year by my doctor showed smooth muscle antibodies, and I had to have re test for this end of jan. Upon calling receptionist a week later, was informed the results were fine, another mistake, there were still antibodies and I should have been retested again a few weeks ago.

Is there no end to the stupidity?

Doctor said my symptoms were more likely M.E and ignored thyroid concerns, he said it was some form of post viral fatigue to which i asked if this would last several years and he said yes. He had feeling ME answered all of my symptoms. I reminded him of skin, hair and nails, swollen tongue, constipation etc and he said yes it can cause these too.

Here are the further bloods he has ordered, which I will go to the local hospital to be drawn at 8.00 am tomorrow (my choice of time re thyroid result mainly)

bone profile

complement c3 and c4

C Reactive protein

ESR

FBC

GFR

HAEMOLYSIS

IMMUNOGLOBULIN AND SERUM

ELECTROPHORESIS

Immunology carrier test

Liver function test

Thyroid function test TSH

UREA AND ELECTROLYTES

VITAMIN d (I remembered to ask about my vitamin d test taken last november, i said there is a link with low vit D and thyroid and thus wanted to know my result, he looked this up and said yes it was low but didnt necessarily mean that it was thyroid, could just be the time of year)

Is there any point to all of this grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!

[rosetrees]

Your GP should have been humanely refused entry to medical school. Your Free T3 and t4 are low. Ask him these questions:

Where is TSH produced? How can he be certain that your pituitary is functioning effectively? How does he know which levels in those ranges are right FOR YOU.

Refer him to this extract from the GMC guidelines for doctors:

"Work in partnership with patients

- Listen to patients and respond to their concerns and preferences

- Give patients the information they want or need in a way they can understand

- Respect patients’ right to reach decisions with you about their treatment

and care

- Support patients in caring for themselves to improve and maintain their health"

I can see what he's doing. He's refusing to acknowledge that you have a whole endocrine system - which can be subject to multiple malfunctions. He's preferring that old chestnut "you've got ME" because it means he doesn't have to do anymore testing and doesn't have to give you anymore treatment.

Stand your ground.

[Femme1 in reply to rosetrees]

He said that if my T3 AND T4 levels were low for me then my TSH would be much higher? I then said what if 2.59 is high for me, perhaps my healthy TSH IS .5 OR 1.0 he then quoted the text book phrase that a TSH lower than five is perfect, thus my t3 and t4 levels are good for me too! Nonsense I know.

Will undertake blood tests in the morning, and I shall fast so that I get a realistic TSH level, then see what the rest amount to.So disheartening !

[Femme1 in reply to Femme1]

p.s thank you for the support, it means a lot that people on here are so caring and more importantly turned on to this issue. x

[shaws in reply to Femme1]

Maybe send a copy of this to your G.P.!

thyroiduk.org.uk/tuk/testin...

[Femme1 in reply to shaws]

I was well prepared Shaws, I took this with me with my list of symptoms, and he basically rubbished it and said my low t3 and t4 where not the kind of lows this referred to, apparently this table means much lower than the range, and he said if my t3 and t4 were low 'for me' my TSH would be much higher. Me no understandy

[shaws in reply to Femme1]

I haven't a clue either. Neither does he if he ignores your clinical symptoms. How can they give 'another name' ME or CFS when there is no blood test to detect these as far as I know, so diagnose on symptoms but not thyroid gland problems.!!

Maybe ask for another referral and [e-mail] has a list of sympathetic NHS Endos or private doctors.

[Femme1 in reply to shaws]

I am begining the process of looking at thyroid specialists now, majority appear to be in London so am searching a little nearer to home, and for those that may not require a doctor referral. Thanks ffor the support

[poing]

That's a pretty big list of things they are going to test. I hope something turns up that will point you towards an answer and help you get well.

At least they are looking - CFS was once suggested to me by a doctor, who ordered absolutely no investigations whatsoever. None!

I think that sometimes the thyroid is an innocent bystander in all this - it stops working because of some other underlying illness. If the thyroid problem isn't autoimmune, I think this is more likely. I'm not saying that thyroid meds won't be part of the solution though... just think it's worth keeping an open mind at this stage.

I do hate it when doctors are so adamant about what things are not. Your thyroid is definitely part of the overall health picture here. The same idiot GP that told me I might have CFS also said I categorically that I wasn't iron deficient. He was utterly and totally wrong as it is possible to be, because I took iron supplements and got better.

[Femme1 in reply to poing]

Youre right about keeping an open mind poing, and perhaps there is something to be said about the thyroid not being the cause but simply struggling because of another issue. But whatever the reason , the GP wouldn't have it that my results were hardly perfect, and obviously not good for me Why does your 'iron' issue not surprise me n the slightest either????

I did say that I was now looking at going private for further tests because I was so worried about my health, could this have inspired the tests?

Makes you wonder doesn't it!

[sarahstevenson]

ME is such an easy diagnosis for them to jump to - as they don't need any proof as evidence and neither do they need to treat you.

My endo says all remaining fatigue on current dose of 30mcg T3 is the result of ME / CFS and couldn't possibly be undermedication of T3. The additional very low ferritin ( 5 now climbing slowly with NHS supplements) D3 etc were just sidelined.

Dr P says "rubbish" - its all metabolic malfunction and you need to know what's really going on. Hope your further tests shed more light on this .

A nursing friend said the positive thing about an ME diagnosis is you can use it for work related discussions. I tried to be positive about this but it hasn't helped and I now have temp low hour jobs when I can.

Take Care

[Femme1 in reply to sarahstevenson]

Agree with you regarding the diagnosis of M E to save further testing, he said he would wait on results but this was his assumption. And Dr P makes a lot of sense, instead of a one size fits all diagnosis which achieves no further research or help, find and treat the cause. Yes I do suffer with bad fatigue, but this is one millionth of the problems i endure, so am non to keen of this being the total focus for diagnosis.

Thanks for the advice Sarah, and I am sorry to hear that you are still struggling with fatigue and similar symptoms

Reply to this

[rosetrees in reply to sarahstevenson]

Your nursing friend needs to review her attitude. It would be more positive to treat people effectively for their real illness. Then they wouldn;t need "work related discussions". Trust me. Been there, done that, got the t-shirt, the book and the film rights.

[sarahstevenson in reply to rosetrees]

Don't worry Rosetrees - Think she was just trying to help me look on the bright side - she's had more than her own fair share of "bad medicine" and is a great patient advocate and quite vociferous on the behalf of patients. We need more like her to fight the patients corner.

[rosetrees in reply to sarahstevenson]

In that case, humble apologies to her friend. Blame it on the Levo - it's making me bolshy!

[sarahstevenson in reply to rosetrees]

No worries as they say down under, probably the way I'd written it - mmm apparently I'm "nicer" after physio and on T3 only according to my hubby and son - what do they mean by that - huh!

[rosetrees in reply to sarahstevenson]

mmmm. I'm on T4 only at the moment, and it's definitely making me a bolshy old ***.

[rosetrees in reply to sarahstevenson]

Perhaps I need to try T3 then! (I might do just that after my appt with Dr P next week)