Treating the lab results- NOT the patient - Thyroid UK

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Treating the lab results- NOT the patient

This is a general comment on the way many GPs are tackling the thyroid.

Faced with an insufficiency of knowledge in the General Medical Profession- they are simply using lab results to manage our conditions.

They do not fully understand know how to interpret data, or lab results. They rely heavily on the automated printout that says a person is normal if they are within range.

An Endo who was called upon to look at my results (but not me) was able to tell my GP that the range on the lab sheet was not actually the range she should’ve been using and provided her with a revised range.

I have read numerous cases ON this site where the GP is simply treating the lab results and ignoring, blatantly ignoring, the symptoms that the patient is feeling. They are not even up-to-date with latest guidelines! I would encourage those new to this site to read other peoples cases and not just get answers to their own - you will learn far more this way.

We had a vet from America visit us the other day. We have known her for some years and she was horrified at the treatment I had received.

Apparently at veterinarian school SHE was taught to treat the patient i.e. an animal, not the labs and that the lab results were there as an aid not to dictate treatment.

I could regurgitate numerous cases that I have come across ON this site to exemplify the level of incompetence we are facing.

All I can say to everybody is don’t rely on your GP to know best - you know by how you feel and they should be asking you how you are not just reading ’normal’ off a lab sheet. It’s symptomatic of a total lack of training- and you really do have to start taking responsibility for your own health and not looking for shortcuts - if need be get a friend or family member to help.

The administrators are going to extreme lengths to provide us with information and yes, it is hard work ploughing through it, but if you want your health back you need to do it.

And finally don’t rely entirely on patient access if at all!

You may find your records are incomplete and that there are records that have never even been entered (as I did). If I hadn’t been meticulous in keeping my own records and asking for my lab results printed out, I would have a very different picture of my recent history since being diagnosed and mismanaged.

All the information that pointed to my treatment after diagnosis for the first six months is incomplete and confusing to say the least, IF you look only at patient access. If you look at my records with the lab results it is clear that I was under medicated.

I’m a 15 stone 5’8” woman and I was kept on 25 µg of levothyroxine for 6 months and left to become extremely hypo because the lab results (using the wrong range ) said ‘normal’.

I have in the main, ceased to trust the medical profession, my trust is earned now. I’m cautiously optimistic I have found one GP out of five that I have had dealings with at my local surgery who is open and interested in symptoms - not just labs. But I am having to be my OWN health advocate going forward.

Question their motives re changing medication, because very often nowadays the financial proceeds the well-being.

Rant over

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Charlie-Farley

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35 Replies

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SlowDragonAdministrator3 years ago

Agree absolutely

ALWAYS get copies of your blood test results ASAP after each test

Just testing TSH and Ft4 is completely inadequate

TSH, Ft4 and ft3

plus TPO and TG thyroid antibodies at least once

Regularly retest vitamin D, folate, ferritin and B12 at least annually

Vast majority of thyroid disease is autoimmune

Do coeliac blood test BEFORE considering trial on strictly gluten free diet

Within range does not mean optimal

tattybogle3 years ago

Good Rant

i'm tempted ,if ever offered referral to Endocrinologist .. to ask to be referred to the local equine vet instead. Citing 'better training in interpreting thyroid labs ,and better observation skills ' as my reason.

Agreed also about 'patient access' / v's getting the actual records .. if what is written on my 'summary care record' is anything to go by .. it looks like a secretary stuck my history on a wall and threw a few random darts in it .. and then included anything the dart landed on in the patient 'summary' .. and just for good measure ,incorrectly transcribed a few of the dates while they were at it ... so according to my summary, i allegedly had post natal depression 9 months BEFORE i gave birth ... (and i never even had post natal depression anyway .. i just got offered an appointment for counselling 9 mths after birth .. which i didn't go to since i wasn't remotely depressed , i just couldn't walk up the hill anymore)

helvella• in reply totattybogle3 years ago

Until they prescribe you:

Levothyroxine sodium : Administered in feed at a rate of 0.1 mg/kg/day

horsedvm.com/disease/hypoth...

Which is approximately sixty times the dosing rate as usually suggested for humans - around 1.6 micrograms/kg/day.

tattybogle• in reply tohelvella3 years ago

Oh .. That might be a bit much for me, even if i do eat it sprinkled on my porridge ~ Wonder if anyone is frightening the horses by telling them they'll all get ostoeporosis and A/F if they take that much ?

Charlie-Farley• in reply tohelvella3 years ago

Would’ve been cooking on gas on that level😂👍 ! 🤪👍

Nonapplicable• in reply tohelvella2 years ago

This made me chuckle - I needed this, thanks x

Charlie-Farley• in reply totattybogle3 years ago

True to form as we both know! 🤣👍

DippyDame3 years ago

Hear hear!!

An old medic friend used to say, " Listen to your body"

High time medics listened to what we tell them our bodies are telling us!

Hedgeree3 years ago

Hi Charlie-Farley,

Yes I'm another one of the many forum members that are experiencing their surgery's incompetence in how to diagnose and treat a possible thyroid disorder.

It shouldn't be the battle that it is and it was only something that I became aware of after posting on this forum and trying to find out what is wrong with me.

It has taken me almost two years to get a referral to an endocrinologist; luckily the referall was accepted and now I'm waiting for an appointment but it could be some months before I get it.

Even then I know not to get my hopes up (as from reading and learning on this forum) many of the endos rely on TSH so fingers crossed I will eventually get an appointment with someone that understands about a persistently below range FT4 ☺

Take care.

Charlie-Farley• in reply toHedgeree3 years ago

Hi Hedgeree

So plenty of time to get super familiar with your own situation and make them dance a little perhaps if they are not helpful.

Plenty of time to come up with a cutting question or two. Perhaps something along the lines of “So where in the diagnostic hierarchy do you place overt hypothyroid symptoms and how the patient actually feels? Does this factor in your diagnosis at all? Or do you just treat the lab work namely TSH?” 🤪👍

knitwitty3 years ago

My friend , who is a retired GP, checked her medical records and she'd had TWO hysterectomies !! I knew she was superhuman but I think that's taking things a bit far !!

Charlie-Farley• in reply toknitwitty3 years ago

Just when you thought you’d heard it all LOL!

😱🤪👍

humanbean• in reply toknitwitty3 years ago

She's not alone. I haven't had two hysterectomies exactly but I have had various organs that have been removed, grown back, been removed again, grown back again. I did once follow the logic of all the removals of organs which were later found again then removed again. It turns out I must have been born with five ovaries and two wombs. I still have one ovary and a uterus left according to my records. (I don't have either, in the real world.)

Charlie-Farley• in reply tohumanbean3 years ago

Humanbean How do they get away with it ?! 😱 data is only as good as as the clowns inputting it 🤣👍

knitwitty• in reply tohumanbean3 years ago

I reckon you must be superhuman then !!

Charlie-Farley• in reply toknitwitty3 years ago

🤣 wonder what I might have multiples of - you have to laugh or you would literally cry 😱

humanbean• in reply toknitwitty3 years ago

Nope - just baffled and shocked at the inaccuracy of medical reporting and that a surgeon can report they saw something that was perfectly healthy which, in reality, wasn't even there. And also that a surgeon can claim, in writing, to have removed something which wasn't there.

knitwitty• in reply tohumanbean3 years ago

Actually it's quite scary because they are supposed to know what they are doing.

helvella3 years ago

The administrators are going to extreme lengths to provide us with information and yes, it is hard work ploughing through it, but if you want your health back you need to do it.

It is extremely hard work for people who have no science or medicine in their backgrounds, who maybe do not have English as their first language, etc. And on top of that, the mental and physical effects of thyroid disorder undermine whatever abilities we once had.

Whilst as an admin I appreciate your comment, let's be scrupulous not to leave out the many people who regularly put in anything from a sixteen hour day to a single helpful comment once a year!

Charlie-Farley• in reply tohelvella3 years ago

Indeed - no offence intended- I’ve had to battle through so much information whilst hypo sometimes reading a single paragraph several times scribbling notes diagrams just to digest one page and it is now paying dividends. I want to encourage people to take charge - no intention to undermine.

I’ve myself have always found learning a slow process and I had to work hard to keep up at school - sometimes failing miserably- mainly because I compared my speed of results with the ones for whom learning comes naturally.

But I know from personal experience, if you are prepared to work as long as needed for stuff to sink in, sometimes days longer than ‘the naturals’ you CAN grasp these topics.

Had a lovely friend whom I considered incredibly intelligent and he told me 10% ability 90% effort. He inspired me to go back to college and do a GNVQ intermediate in general science (sort of CSE/O level) I had to have a sleep when I got back every night from college my brain would hurt and this is before being hypo. Persevered and passed. All study since has been hard. Knowledge to me is like mud to a wall. Keep chucking and it eventually sticks. 😊👍

helvella• in reply toCharlie-Farley3 years ago

No offence taken and I just wanted to make sure the thanks were properly distributed.

serenfach3 years ago

I think I first lost faith in the NHS when a Consultant told me my vitiligo was because I did not wash properly!

A friend and I have made a pact that if either of us is admitted to the local hospital, not known for its quality care - then we will be a hovering advocate, double check stuff, question stuff etc. This should not be necessary of course, but both of us have had near misses with this hospital.

Charlie-Farley• in reply toserenfach3 years ago

Very wise!I have similar with hubby - you just have to nowadays. Diagnosis by symptoms has been replaced by treat the lab work 🙄

Localhero3 years ago

I hear you.

I lost faith in the NHS after an abnormal smear test almost 20 years ago. I have a family history of gynaecological cancers. My mother died of ovarian cancer, my aunt and cousin from uterine and breast cancer. But when I asked to be referred to a gynaecologist, I was told, the abnormality is very mild; we’ll do another smear in six months. Even when I reminded them of my family history, they refused to budge.

So I went to a private gynae a friend of mine had seen and rated. Turned out he was an expert on cervical cancer. He took one look and said, “this is not mild; this is moderate and severe. Some of it looks like it’s on the cusp of becoming cancer. It needs immediate attention.” His biopsy confirmed what he’d seen. I had surgery a couple of weeks later.

I had no money as I was on my own at that point and work had been quiet, but I put the fees on a credit card. But I didn’t care. I was never so glad I’d listened to my intuition. Needless to say, I’ve had jaundiced view of GPs and indeed most of the medical profession since then.

Charlie-Farley• in reply toLocalhero3 years ago

Yet another decision based on finances not on clinical excellence.

Thank God you listen to your intuition….

Localhero• in reply toCharlie-Farley3 years ago

Completely!

SarahJane14713 years ago

Great comments all 👏I have just read an article written by Dr Toft in 2017 about this exact thing. I don’t know how to attach the link 🤦‍♀️I am such a Luddite !

He basically says patients are suffering because doctors don’t listen to patients symptoms but treat using regimented guidelines.

It’s called Counterblast to Guidelines. Published in December 2017 in Royal College of Physicians Journal

knitwitty• in reply toSarahJane14713 years ago

It makes you wonder whether we could diagnose ourselves better than they can if we had access to the same diagnostic tools that they tap away at when you go and see them, that's supposing you can actually get to see them at all in the current climate !

tattybogle• in reply toSarahJane14713 years ago

i used to be a luddite. but now i can do this rcpe.ac.uk/sites/default/fi... (link to Toft's counterblast to guidelines)

SarahJane1471• in reply totattybogle3 years ago

👏thanks . I’ll work out how to be that clever when my Levo starts to work 😀

Localhero• in reply toSarahJane14713 years ago

Such a great article. Sadly, doctors are being driven by the wrong measures.

SarahJane14713 years ago

Also I great video on YouTube with talk by Dr Toft filmed by The Thyroid Trust in 2018.I’m late to the party

Charlie-Farley• in reply toSarahJane14713 years ago

Is it this one?

m.youtube.com/watch?v=HYhYA...

SarahJane1471• in reply toCharlie-Farley3 years ago