DOCTORS LISTEN YET DON'T HEAR: 16 years... - Thyroid UK

Thyroid UK

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DOCTORS LISTEN YET DON'T HEAR

Retrowoman profile image
19 Replies

16 years HASHIMOTOS HYPO/HYPER 3 DIFFERENT THYROID MEDICINE'S & ONLY STABLE FOR A COUPLE MONTHS AT A TIME & GOLD STANDARD TEST "TSH,FREE T4 T4"

ASK FOR REVERSE T3 ASKED TO TRY TIROSINT & THE WALLS GO UP.

INS NEEDED CLINICAL INFO SHOWING UPS&DOWNS & 3 DIFFERENT THYROID MEDICINE COURSE THEY ONLY SENT SHOWING 1 MEDICATION USED & SAID I'M STABLE. SO INS DENIED NEW MEDICINE.

ASKED TO HAVE REVERSED T3 WAS TOLD COME IN WE'LL TALK ABOUT IT

SO THIS IS COMMON .

HAVE BEENUP TO 300 MCG LEVYTHYROXINE YOU'D THINK THEY'D DO A FULL THYROID PANEL EVEN SAID IF INS DIDN'T COVER I'D MAKE ARRANGEMENTS TO PAY IT.

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Retrowoman
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19 Replies

Can you get a hold of most recent results and post?

If you go to the Thyroid U.K. site look for the link to private labs available. Medichecks offers various discounted labs every Thursday, while Blue Horizon has various options for testing.

Be sure to always have labs done first thing as early as possible after fasting (water OK) and no Levo for 24 hours prior. This (patient to patient only tip) insures your TSH result is the highest possible result thereby avoiding dosage being lowered inadvertently.

And note that you are legally entitled to lab results - if they balk at your clinic very directly remind them they are breaking the law by withholding any results.

Retrowoman profile image
Retrowoman in reply to

All my Lab Results are on my Patient Portal all the way back to 2001.

So it's not like the Doctors can't see them,they just don't take the time to look & all they do is keep repeating standard test & up/lower meds.

Personally I think it's because if we start getting well then don't have to see them as often & that cuts into their pocket.

shaws profile image
shawsAdministrator in reply toRetrowoman

You only need a copy of your most recent blood test, with the ranges and members will respond. Put them on a new post.

startagaingirl profile image
startagaingirl

Echo everyone else, we need to see numbers to advise. If you can see them then post them. Without that everything is anecdotal only.

Retrowoman profile image
Retrowoman in reply tostartagaingirl

Appreciate it however my TSH HAS BEEN AT 64 T4 NORMAL T3 WAS NOT TESTED

I'M GONNA MAKE SURE TEST FOR T3'S GETS DONE.

JUST GOT ON SITE TO SHARE MY EXPERIENCE

Naomi8 profile image
Naomi8

A recent item in the news reported a case where the police were told of a serious offender at liberty over a number of years .They ignored what was being said due to not believing the credibility of the information from a member of the public.This was named as BIAS.GPs & endos hear but don't listen due to bias caused by ignorance,arrogance & having been conditioned(brainwashed) by their training into believing they are always the keepers of truth & rationality.

greygoose profile image
greygoose

I wouldn't get in a flap about testing rT3, if I were you. It's not going to make any difference to the way they treat you - they possibly don't even know what it is!

If your FT4 is high and your FT3 is low, then you're going to have high rT3. Don't need a test to tell you that. And the 'treatment' is to lower your levo and add in T3 - but what are the chances of your doctors agreeing to that? Very low. They don't have the knowledge to realise that is necessary.

If both your Frees are low, and you have high rT3, it's for non-thyroidal reasons - a bug, or a starvation diet, or something. And, there's not much you can do about that, either, except wait for it to go away.

You can, of course, do it privately, but it's expensive, and doesn't really add much to your sum of knowledge. rT3 doesn't cause symptoms, and only stays around for a short while before it converts to T2. So, it's a bit of a non-event, really. :)

Retrowoman profile image
Retrowoman

Reverse T3 SHOWS RESISTANCE to the T4 MEDICATION "SYNTHROID,LEVYTHYROXINE, ARMOUR ECT, & EXPLAINS A LOT..

NOT HAVING A TIZZY JUST STATING DOCTORS KEEP DOING SAME OLE SHIT & IF THEY REALLY CARE THEN HEAR YOUR PATIENTS & REVIEW LABS & HELP THEM TO GET BETTER...

Angel_of_the_North profile image
Angel_of_the_North in reply toRetrowoman

Is that scientifically proved anywhere? Why would a doctor care? They get paid anyway and the less you see them the better for them as you aren't taking up their time but your presence on the books gets them funding. Just try another GP.

I think it's the other way round: their ears hear, but their brains aren't listening - they are probably planning the afternoon's golf round or how to avoid the traffic when collecting the kids from private school. The NHS doesn't do Rt3 because they don't test T3 either and won't change treatment based on it - only levo is necessary and that's the only treatment in primary care. If you want NDT or T3, you'll need to go private or self-medicate (or find one of the rare endso who will prescribe), and you'll need to pay for your own tests from Blue Horison or Medichecks.

guysgrams profile image
guysgrams

I had to actually print out my reports and hand them to my Endo in order for her to take notice. We have had several discussions on my treatment since I started seeing her back in 2015. When we first met she agreed to start me on a combo of Synthroid and T3 and after a year of messing around with dosages and my testing the T3 only waters she agreed to put me on T3 only. That was in May of this year. So far so good. A year ago I had over range FT4 and over range RT3 (combo dose). Now my Ft3 is at upper end of range.

Retrowoman profile image
Retrowoman in reply toguysgrams

Well I'm here in the STATES & DOCTOR'S EGO'S GET IN THE WAY.

I HAVE SAT WITH THEM LOOKING OVER LAB RESULTS ON PORTAL & STILL KEEP DOING SAME OLE

SO I'M BECOMING MORE INSISTENT WHICH THEY DEFINITELY DON'T LIKE BUT IT'S MY BODY & I AM WANTING TO FEEL BETTER AT LEAST AS WELL AS I CAN.

WHEN 16 YRS OF 3 DIFFERENT THYROID MEDICINE'S HAS NOT HELP IT'S TIME DOC'S CARE TO THINK OUT SIDE THE BOX & DARN SHAME I HAVE TO BECOME PERSISTENT FEEL LIKE A RECORDING. I DON'T LIKE THAT.

startagaingirl profile image
startagaingirl in reply toRetrowoman

Please stop shouting at us - perhaps you don't realise the majority of us are in UK and our culture is slightly "quieter". By all means have a rant, the majority of us have been there with doctors who simply don't understand thyroid issues, but shouting at us (capital letters) just makes it difficult to read anyway.

If you want the assistance of the many expert patients here who know much more than the typical GP or endo, then give us your numbers.

helvella profile image
helvellaAdministrator in reply tostartagaingirl

Retrowoman

To repeat what startagaingirl has said, using all capitals is often called SHOUTING and is felt to be unwelcome - unless there is a special need.

Retrowoman profile image
Retrowoman

Well I used to say same however the act like their LISTENING until i read appt summary & they didnt HEAR what I said...

Retrowoman profile image
Retrowoman

WELLDON'T ASSUME I'M SHOUTING JUST BECAUSE EVERYONE SAYS IT MEANS THIS IN TEXT

ACTUALLY EASIER FOR ME TO SEE THE TEXT GOT BAD EYES.

NO DISRESPECT INTENDED

startagaingirl profile image
startagaingirl in reply toRetrowoman

Then how come some of your earlier posts above are in lower case? If you have bad eyes, all computer equipment has accessibility features built in that act as magnifiers to dramatically increase font size. Use of this might help you to get more out of this site as we all use lower case.

Disrespect taken

Retrowoman profile image
Retrowoman in reply tostartagaingirl

IT'S CALLED ZOOM & WHY ARE YOU TRYING TO ACT LIKE MY TEXT ETIQUETTE IS OFFENSIVE AFTER I STATED NO DISRESPECT INTENDED. THAT DUE TO MY EYES STRAINING I GO TO CAPS...

I HAVE MULTIPLE SCLEROSIS WHICH AFFECTS MY EYES.

LouiseRoberts profile image
LouiseRoberts

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