Raging: Went to the doctors as I said I still had... - Thyroid UK

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VanessaB profile image
12 Replies

Went to the doctors as I said I still had a swollen tongue,ridged fingernails,dry eyes,lack of libido always getting sore throats,pins and needles at night.

He looked at my blood tests said there was no reason to up my dosage as my ft4 was 15 (10.3-22.0) and was smack on in the middle I had the book from Dr.toft open at most patients feel better with ft 4 at higher end of normal.

He didn't even look at the book.

my tsh was 0.5 (0.35-5.0) I said to him people that feel great don't look for reasons to feel better as they are busy enjoying themselves.

I'm furious it's not treatment for a cold it's a chronic long term illness.

It seems to fall on deaf ears like talking to a robot the results say you're fine.Well I'm not bloody fine he didn't even look at my fingernails or tongue he has agreed to up my dosage and noted on my request.

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VanessaB
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12 Replies
shaws profile image
shawsAdministrator

They usually wont read items you bring in at the appointment. You can email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's article in Pulse and post it to your GP highlighting the appropriate question maybe then he will discuss it with you next time.

If he wont do anything ask for a referral or ask Louise in the same email to post you details of NHS Endos or private doctors. The just do not know anything about clinical symptoms, particularly the ones you state above.

VanessaB profile image
VanessaB in reply to shaws

Thank you Shaws I was just so upset as I named everything that was wrong he didn't even look at my tongue or nails or even suggested what it is if it's not my thyroid.

And shouted a me like a child saying Mrs Bowers your blood tests are perfect there is no reason to up you dose your ft4 is bang in the middle.It is an ongoing illness.I used to work as an electrician but I can no longer hold my arms above my head for my period of time or pull cable.

I can't get them to refer me either as they've said bloods are indicative it's no my thyroid.

I think private is the only way to go now.I will ask Louise to email the list to me.

Thanks once again and goodnight

ellarose1234 profile image
ellarose1234 in reply to VanessaB

I've heard so often on here that a doctor says "it's not your thyroid" did you ask him what it was then? It's no good him just saying what he considers it's not what is wrong with you, he should then discover what it is. Is that the way doctors diagnose nowadays? "It's not your thyroid....goodbye!"

shaws profile image
shawsAdministrator

We do get angry because we shouldn't be begging for help. Dr Lowe said most of us or too low a dose and it can make things worse. This is a link of answers to questions.

web.archive.org/web/2010122...

Excerpt

Barnes was right when, long ago, he wrote that circulating levels of hormones don't measure what's most important—how the patient's tissues are responding to a dosage of thyroid hormone. Our regimen involves multiple measures of how tissues are responding to a particular dosage, repeated at short intervals in a highly systematic way. Our model of assessment is taken from behavior modification, in which I was trained in the early 1970s. We know from hundreds of trial runs that we can precisely control the metabolic status of most patients only by using these multiple measures of tissue response. We adjust each patient's dosage until these measures tell use we've achieved normal tissue metabolic status—regardless of what the patient's circulating hormone levels are. I concede that you can do some fairly good tweaking by using free T3 and T4 levels. But still, if the patient's tissue responses aren't carefully assessed, the clinician isn't focusing on what's most important—the patient's physiological and clinical responses to treatment.

tulula59 profile image
tulula59 in reply to shaws

Please, please .... how do they measure/analyize/confirm our tissue responses whether you are on meds or not?

Are there tests for tissue responses?

Our own responses show clinical symptoms like swollen tongues, ridged nails, muscle aches and joint pains etc etc etc. If these wont be taken into account how else does one get anything actually confirmed when bloods are withing 'range'?

Any input here would be most appreciated.

WaryofMDs profile image
WaryofMDs

I believe that the reason doctors don't want to treat us properly for hypothyroid is that if they did there would be thousands of anti-depressants, painkillers, sleeping tablets, appetite suppressants and so many more medications that the drug companies couldn't sell! The thyroid replacement business is finished as the little white thyroxine pills are cheap and mass produced and don't create any profit to speak of. The NHS is now simply and outlet and testing ground for the drug companies. Well, my rant's over for the time being, I'd love to know if anyone agrees?

Stourie profile image
Stourie in reply to WaryofMDs

Agree with everything you have just said

Jo xx

Alexa-de-paris profile image
Alexa-de-paris in reply to Stourie

yes agree though this point, i feel needs adding:

additionally the NHS have this odd stipulation that if one is diagnosed with something that requires a hormone for life (as with diabetes) then all prescription related to what ever problem ( any other pills), are prescribed free of charge.

which I find ridiculous actually.

This included any antibiotics creams etc... yes i guess there are a load of TF symptoms that could benefiy from other meds, but fact is if the hormones are regulated and diet is regulated the other TF affected symptoms clear up on balance so those extra pep pills aren't ever need if regulation is done effectively.

so there is also a NHS cost saving mechanism at play too by NOT diagnosing TF problems and getting people to pay for other pep pill type meds ("to try out" in the process)...

i think a whole review of NHS prescribing guidlines is required also with a new clinical range review !

(and Yes ok prescribe any other hormones or thyroid related thing free of charge, but not everything).

WaryofMDs profile image
WaryofMDs

I mean "an" outlet for the drug companies not "and".

vajra profile image
vajra

It's to my mind fairly clear Vanessa that whatever the rationale that the combined position of the profession is to refuse treatment beyond bringing thyroid hormone blood values within range. i.e. to refuse to treatment based on symptoms.

We've had many discussions on why it suits the various entities that make up the system to defend this particular position.

There's a few that are more open/more committed to care. My own endo has quite candidly said that while he agrees that many are hypothyroid despite 'correct' blood values that there is /are no definitive tests available to establish thyroid status at the cellular level.

Despite this the great unspoken seems inevitably to be the above - that it is possible to treat by symptoms, and that the mostly selfish financial, legal and other reasons explain why there is such resistance to treating patients based on a combination of blood values and symptoms...

One view (based on a lot of experience) is that if a doctor won't treat symptoms and all is not well then it's time to move on. It's not most of the time like these people are ill informed and making decisions off partial information - they are acting off strongly held views. Better not to waste time and money beyond the initial tabling of the facts/symptoms trying to persuade the unpersuade-able - just move on to another.

For what it's worth aching arms and shoulders when trying to raise the hands above the head (in my case when installing ductwork in my woodworking shop, or just washing my hair in the shower) are very familiar to me - and in my case most definitely is the result of (possibly only moderate but significant) hypothyroidism. It's one of the first symptoms that surfaces along with a general lethargy.

One to watch out for is that it may be as above related to more than just blood hormone levels. I actually do OK once I'm in the upper half of the range provided everything else is all right.

Too much T4/not enough T3 though will produce the same symptoms for me even though my bloods seem OK by the stock tests - probably because my conversion and use of the hormone is compromised.

ian

auldreekie profile image
auldreekie

Those symptoms Vanessa are classic B12 deficiency symptons. Search here there is a lot of info on B12.

Lawoman profile image
Lawoman

Anybody thought about what's going to happen now that our 'beloved' gp's are in charge of the budget!!

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