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
Written by
Charlie-Farley
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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)
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 ?
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 ☺
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?” 🤪👍
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 !!
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.)
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.
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!
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. 😊👍
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.
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.
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
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 !
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