Does anyone understand why doctors ignore the thyroid and will make people go under every other test possible because they won't admit that it is the thyroid causing the problem? Also, why do they not usually test for autoimmune thyroiditis as the cause for hypothyroidism? And why don't they tell you that this is possible that it may be caused by an autoimmune disease and that giving you T4 meds is not going to stop the auto-immune problem? I just can't get my head around it!!
They also, in my experience, treat the thyroid as if it is separate to the rest of the body. They said it has absolutely nothing to do with my irregular periods - and it has nothing to do with other organs in the endocrine system. They also said that heart palpitations have nothing to do with it either. I just thought it was important to share this information with others because if I had listened to, and believed these doctors, I would probably not be alive right now. I educated myself and became my own health advocate, and I'm so glad I did.
Does anyone understand why doctors ignore the thyroid and will make people go under every other test possible because they won't admit that it is the thyroid causing the problem?
Because they were told in med school that thyroid wasn't really a problem, most patients are liers and whingers and exaggerate their problem. And because they learn nothing about symptoms for hypo. Therefore, if someone has a symptom, it must be something else, and if your labs are all in range - and you only need to test TSH to know everything about thyroid status anyway - then there's nothing wrong with your thyroid.
why do they not usually test for autoimmune thyroiditis as the cause for hypothyroidism? And why don't they tell you that this is possible that it may be caused by an autoimmune disease
Because they didn't learn about autoimmune thyroiditis in med school and know nothing about how it works, and believe it is irrelevant.
and that giving you T4 meds is not going to stop the auto-immune problem
See above. They probably don't think that T4 is going to stop the auto-immune problem, because it isn't meant to. T4 is thyroid hormone replacement, and just replaces the hormone that your thyroid can no-longer make. But, then again, there is nothing that is going to stop the auto-immune problem. All we can do is replace the hormone that your thyroid can no-longer make…
They also, in my experience, treat the thyroid as if it is separate to the rest of the body
Yes, but the do that with all the body parts. That's what they learnt in med school, and what they learn in med school is sacred, and has to be true and they don't want to hear anything against it. What we should be asking is why are they not interested in going forward an learning new things. For them science stopped on the day they left med school, and everything they learnt there still applies.
They said it has absolutely nothing to do with my irregular periods. They also said that heart palpitations have nothing to do with it either.
As I said, they don't learn symptoms.
However, I think most of us are on to them, now, and we don't believe a word they say anymore! But, the question that is probably now occurring to you is: why is their education so bad? Well, for that you have to know that Big Pharma controls the purse strings where most medical schools are concerned. And he who pays the piper calls the tune. Big Pharma decides what doctors learn in med school. And, it is not in BPs interest that doctors learn how to make patients better.
If all us hypos got the right treatment, we would no-longer need all those PPIs, those anti-depressants, those statins and beta blockers and all the other drugs that mask our symptoms (if we're lucky!). And Big Pharma would lose a lot of money. And they don't want that! Big Pharma is not in the business of creating cures, it's in the business of making return customers. So, nothing is ever going to change whilst they reign supreme. Are doctors to blame? In part, I think, yes. But, I guess they've got to make a living like everyone else. Just curious that The Caring Profession should stoop to causing so much harm.
Thanks for your extremely insightful reply - I hope all thyroid patients get to read this. Yes that does make sense if Big Pharma is controlling what they learn in med school. It doesn't suit their business model for patient's to get better (especially thyroid patients who have a whole host of issues). It's so dangerous as we are taught to trust the medical system with our lives.
I can only say ‘hear, hear’. Like Dani272 I have had to learn about hypothyroidism and in my case, NDT, because Teva does not agree with me. My doctor literally said to me: I know nothing about NDT, look it up on the Internet. If that were me I would make it my business to learn to help my patient. Gisela
I think it's rather rare to get sent to a specialist, these days. They much prefer saying there's nothing wrong with you, it's all in your head. So many people clamouring to see and endo and doctors refusing out-right. Mind you, there's no guaranteeing they'll get the treatment they need even if they do see a 'specialist', they often appear to be as clueless as GPs!
I would have thought that was a dangerous thing to say, given that they have no idea what's a symptom and what isn't. Headaches can be caused by so many things, not just thyroid.
That's funny about the knee bending thing. I was mute for six months after my thyroidectomy and someone suggested I might be able to get "disability" for a while because I truly couldn't do much in public. So I took the government's medical examination and the doctor seemed more obsessed with how far I could bend my knees than anything else. He said that he had never seen anyone so physically fit and declared me perfectly fit for work! I wrote on a piece of paper that yes, my body in general was very fit but I was MUTE! He didn't seem to know what to do with that info and that was the last I heard about it. Someone gave me the phone number of a lawyer that would fight my cause - but, of course I couldn't do anything about it because... you guessed it, I was mute.
Endocrinologist are less than useless. Waited months only to be told everyone in the waiting room would tell him that they are tired, and food allergies had nothing to do with me feeling unwell. My bloods were OK, so I was to carry on doing what I was doing. I felt like death warmed up. Thankfully the internet told me different and with 3 days of giving up dairy I felt so much better.
I expect he was a diabetes specialist - most of them are - and their ideas about thyroid are even weirder! Being called 'endocrinologist' implies that they know all there is to know about all hormones. In reality, most of them just have a smattering of knowledge about insuline, and that's it. It think it must be the most uneducated speciality that exists!
Omg I was the same!!! They told me my symptoms had absolutely NOTHING to do with diet or allergies or anything. Even though my body was not digesting anything I ate. They told me to drink milkshakes. MILK!? But ironically when I took out dairy from my diet, my health improved DRAMATICALLY. They shouldn’t say such things as it is so dangerous. If I’d had carried on doing what they told me to do, I wouldn’t be here today.
Most of us feel and have experienced the same....I posted earlier about an endo who didn't appear to have a clue...they are everywhere.....greygoose has summed it up.....I hate to think what state I would be in now if I had followed conventional hypo treatment......in a padded cell or dead more likely!!
The only thing medics seem to do is raise your blood pressure!!
They are not trained properly - Greygoose has said it all. Even when something is staring them in the face they will ignore it if TSH is within range.
When I was first really unwell in 2005, with what I know now was hyperthyroidism, I had many typical symptoms. I didn't know at the time because my brain was badly affected and i couldn't think at all clearly or understand anything. Apparently, according to my medical notes, which I got in 2012, I also had a 'visible goitre'. That was completely ignored; I was told that my physical symptoms were 'all psychological' and I was put on a cocktail of psychotropic drugs which sent me completely out of it all for the next 5 years. Can a goitre be psychological??!
Thanks for your reply. Omg... I cannot believe they ignored a goitre??!!! That's insane! i am totally in shock about this. How are you doing now - have you got the right treatment?
Thanks Dani272, It's a very long saga - I was left to moulder on for more than 5 years, being told to take all those damn drugs, go for all sorts of 'therapies', and go on courses which were supposed to 'help my anxiety & depression'. As I was no more than a zombie, due to the effects on my brain of the underlying thyroid disease plus antidepressant, antipsychotic, anxiolytic, I was just saying 'yes'to everything. The moronic GP did at least put me on beta blockers (I suppose because of my anxiety); otherwise I could well have had a stroke. He kept on & on about everything being 'psychological' and I remember that at one point he said he'd 'studied some psychology and was always right'!!! He did no more blood tests, no physical examinations, only had a very smug smile on his face all the time when he was telling me to 'try harder'.
Due to circumstances, I was totally alone at that time and had no advocate to stand up for me. I found out much later that a couple of friends, not local, did ring the GP to say they'd known me for many years and after speaking to me on the phone they realised there was something terribly wrong with me - one of them actually tracked down his number down from her home in Australia - but he assured them that 'everything was under control'. In fact he even barred one of them from calling, because she was pestering him so much!
I had absolutely no motivation to do anything of my own volition, but by a long & roundabout way, at the end of 2010, I eventually consulted a private hypnotherapist. After a couple of sessions, he said he couldn't help and insisted that I get a 2nd opinion from another doctor, so I saw a lady doc. at the surgery. She took one look at me and ordered a whole raft of blood tests. Thyroid results:
TSH under 0.05 (0.25 -5.0)
FT4 82.9 (9 -23)
FT3 27.1 (3.5 -6.5)
She referred me to endocrinology, saying I'd have to have RAI. Finally in January 2011, I was seen at the endo dept. at Ipswich Hospital. Things were still against me - they said I'd got Graves', but did no proper tests, started me on Carbimazole, but told me I'd have to have RAI anyway. As I still was not in possession of mental faculties, and only wanted to feel better, I did what I was told, and after only 2 months, had this horrible RAI.
The awful story goes on and on; it's actually incredibly nasty but I won't bore you with it all. After alternating between Hyper and Hypo for another 18 months, seeing more ignorant endos, getting absolutely nowhere and feeling really desperate, I somehow came across the wonderful Dr. P and consulted him in January 2013. I owe my life to him and will be forever grateful that I managed to find him when I was still unable to think clearly or comprehend much at all.
Thanks to him, I know that I've actually got Hashi's and have had it probably most of my life ( I might have Graves' as well, but don't know for sure). Since 2013, it's been a long hard journey, with a lot of trial and error, 2 steps forward, one step back a lot of the time, but I'm now SO much better. My brain seems to be working better than it did for a long time before I was so acutely ill, and I'm myself again. The whole thing was complicated by the fact that close family members had taken advantage of me when I was so vulnerable, to do me down in order to feather their own nests. Dr P was so very understanding about the whole situation, which really helped a lot.
Thanks to his advice and my own grim determination, which I'm now able to tap into, I've turned my life around and since the beginning of 2017, I've felt well and been very happy. Needless to say, I changed GP surgery! I know from other people that the ignorant, arrogant b......d is now a partner at that surgery, still telling people that he's always right.
Once I was able to think for myself again and just before I saw Dr P, I did complain to the GMC, but they defended the GP of course.
Sorry to hear you were let down badly, as was I. Make a complaint to PALS (Patient Advice Liason Service) & a formal complaint to the Surgery. PALS will follow it right through. Whereas the GMC will only defend the Dr. Good Luck 👍
Thanks Hillwoman - see my reply to Dani272. My complaint got me nowhere.
As SlowDragon has said, the NHS would have been saved a huge amount of money if I'd been diagnosed and treated properly at he outset. I must have cost a fortune!!
The really maddening thing, to put it mildly, is that similar occurrences are happening all the time, and the NHS is still wasting an incredible amount of money, while I, like so many others on here, am having to fund my own medication (I'm now taking T3 with a low dose of Metavive) plus supplements etc. Anyway, must stop writing now and go and get something to eat! Cheers, Trixie.
So very sad to read the additional details of your story. I wish I could say you'd just been very unlucky, but we know on this forum that your experiences are common. Many us have to self-treat, as do you. Glad you found Dr P and your health is improving. xx
Thanks Hillwoman. It was actually a lot nastier than I wrote - I left out the worst parts. I'm really incredibly lucky to be alive at all.
However, fortunately I am still here and as the saying goes - what doesn't kill you makes you stronger. Although I wish I hadn't lost almost 6 years of my life, the whole saga has given me many things to be grateful for.
I wish you all the best in your health journey. Take care. Trixie xx
Think of the money saved and medications not needed if we were treated correctly ie. Full Thyroid and vitamin testing and dosing using Levothyroxine and T3 (or NDT) according to FT3 and FT4 and optimal vitamin test results ( often requiring ignoring of low TSH)
Thanks for your reply. Yes I always think that if they just treated thyroid patients properly, that would deal with sooo many other health concerns that are created as a result of thyroid problems.
Id like to say thats its ignorance over thyroid illness alone but in my experience its far wider than that. Doctors are taught to not think these days......they look at their screens and follow what shows up on them......using grey cells doesnt come into it very much at all, top that with a ten minute window to see a patient, come to a diagnosis, treatment plan & keep a record, its plainly obvious that we all have no chance of getting proper assessments or treatments unless its on their screens!! I find it really quite acary at how the art of medicine has just plain dissappeared.
I like quite a few others pay out for a private consultation if needs be where you get an hour and a doctor with time to think and then you can tackle the ignorance issues if needs be......
The other week I went to my GP to ask for my heart meds to be phased out....something that the cardiologist had written should happen after a specified time. The consultant told me the GP could do that. Oh no said the GP I cant do that I will have to refer you back to the consultant......I rest my case.......
All who have replied to Dani are spot on. Grey Goose has really explained it down to a tee. Doctors just don't know but I don't blame them I blame the system they are not taught properly about it in medical school because every doctor I have been too can not explain anything to me about the Thyroid they just go on the results they get from the pathologist and fill out a script for the tablets. Maybe their lecturers don't know either. One of my tests came back with a remark under the readings of my Thyroid from the pathologist after about 35 years of taking tablets which said" Thyroid readings normal at last" I asked my doctor what it meant (I knew but didn't let on to him) he actually passed over the topic and never really answered my question. From what I have read on here everyone is so helpful with their knowledge and I would like to thank you all for that. Doctors need to go back to study the Thyroid or read this column actually I have told them about it, even my Endo I can tell they didn't like it but the truth never hurt anyone.
Sadly, your story is very familiar to most of us here. ... Doctor 100 years ago, used their eyes and ears. If you had all the symptoms of hypothyroidism, you were treated for hypothyroidism. ... Now, doctors "treat to the tests". IE: If your test results are "normal" they won't treat you for hypothyroidism even thought you can be sitting in front of them with every hypothyroid symptom in the book! ... Honestly, it's a wonder most of us haven't lost our collective minds! ... See if you can find an OLD doctor. Some of them still listen.
Also , a hundred years ago doctors would generally only treat patients who could pay them, so if you were poor you could not hope for treatment. Our current government maybe wouldn't mind if those days returned!
Oh yes Dani! I have been there, done that, wore the T-shirt! I had a lovely old fashioned GP who listened, thought out the box, examined you, would make suggestions and recommendation and was generally fab. I got Ill, he listened, he tested me and concluded l was developing a thyroid problem. Monitored me for a while (as I was post partum) then diagnosed me with Primary thyroidism, dosed me fast and well, sorted out my exemption certificate etc. All was well until I moved to a new area. New surgery, new GP. I assumed all GPs were kind, intelligent and well informed like my old GP. What a shock! I ran out of medication, went to see my new GP for a repeat prescription, met an old fart who drooled that ‘endocrinology was his specialism’, and by just looking at me (not examining me) he concluded ‘if you have a thyroid problem I’ll eat my hat!’, he then spent the next 2years referring me to a variety of specialists (except an endocrinologist), even a ENT for my swollen, painful throat and hoarse voice. (In amongst all their comments (which I found out years later) he had several comments and recommendations including ‘her TSH is marginally raised (3 separate observations) ‘I believe she has some kind of autoimmune disease’, ‘I recommend she sees an endocrinologist’, ‘and labelling her with ME is an unhelpful diagnosis’. Guess what he diagnosed me with? Yep, you guessed it ME/CFS. I then spent the next few years so Ill, I was ready to top myself. I had to attend a 6 week CFS clinic where they talked about pacing, and having to live with an incurable condition, and finally someone there listened when I said I used to be on levo and referred me to an endo, who immediately trialled me on 50 levo (I was previously on 100). So obviously I still had a lot of symptoms. It has taken over 13 years to finally get back to where I was when I was originally diagnosed with hypothyroidism. Even then every symptom/ill has been blamed on ME, I even had 2 endocrinologists state my previous symptoms were due to hypothyroidism not ME, yet GP ignored it all. The old fart is the remaining partner of my surgery and treated like god. Other GPs in my Sugery have come and gone. I have had 2lovely ones join over the years who left within months. The rest have been cloned locums who just tap away at their keyboards not even looking at you. I thought it was just my surgery, but I think it is endemic across the NHS, docs too scared now to think for themselves and make recommendations. I read another post about what Jeremy Hunt has done to the NHS over the last 10 years and I think there is a correlation there! OMG it is so depressing when you think about it! I finally have my diagnosis, but am now fighting the extremely poor care. The best thing I did was find this forum and learn as much as I can about what is going on in my body! Personally I don’t trust the NHS. (Dreadful Treatment after disastrous emergency birth experience too! - the system is broken) You occasionally come across a godsend in amongst the sea of mediocre, but they inevitably have their hands tied.
Is this also true of say Chinese doctors, or mainly Western ones? To me it seems in the Western system the diseases that eat up hospital profits command the most attention such as diabetic complications, congestive heart failure, lately the opioid crisis.
Diseases where people muddle along for years & years & years are perhaps not ones tracked closely, or studied to monitor hospital/practice quality. We are usually not the life or death squeaky wheel, obvious money pits requiring STAT resuscitations night & day.
Gifted doctors & nurses who labor successfully to keep patients out of specialist offices, hospitals & their intensive cares do not receive the limelight or comparable pay to the specialists. The little if any reward they receive is becoming the doctor’s doctors. Their practices (in the states) become quickly “closed” - sorry 😐
Chinese doctors often study TCM (Traditional Chinese Medicine, & elsewhere in Asia, TAM:Traditional Asian Medicine) & Western medicine for 4 years each so there's far more of a holistic approach. Patients get treatment depending on what is the best for their needs when they present with a condition. Both approaches are accepted equally rather than TCM being thought of as quackery. People choose TCM/TAM as a first line approach at the start of an illness to nip it in the bud rather than as a last resort when Western medicine has failed.
There was a BBC documentary that may still be available on YouTube about Acupuncture. A young woman had heart surgery with Acupuncture as part of her treatment, & was filmed leaving hospital in a fraction of the time someone would leave a Western hospital for the same treatment. I tend to go to my GP & pain services only when I'm unable to fix something myself.
Ditto everything you said. I always have hashimotos and only found out through my own private testing. Took results into 6th GP with my autoimmune family history and only then did he refer me to an endo who has signed me off after testing for adrenal fatigue WITHOUT doing my T3 still. Nobody will do my T3. Now going to pay. Crazy crazy. I feel your pain. I don’t know why they choose to ignore. I think it might be the cost of T3 and also not really understanding importance
I agree with all above, but you would think it would be cheaper to treat all of us who have thyroid disease with the appropriate medicine, instead of going round the houses, at great expense.
Every time I go to my GP with any complaint, he just pushes another pill. and when I get home and read the instructions, they are never compatible with any of my other medicines or illnesses!!!!!!!!!!!!!!
I never take them. They are also put on repeat, crazy.
Lots of Dr's are not trained well enough with thyroid issues . Most that know something only know the T4 part . The T3/NDT they don't even consider since they are afraid and don't understand much about it . The T4 BIG PHARMA has very big lobbyists and therefore are in the pockets of the Medical Academia . They train Dr's accordingly . It's about time that Dr's get the appropriate training so that thyroid patients can feel their *Optimal* .
I think it is nearly all to do with money unfortunately. Can't think of any other reason the UK "normal" ranges are wider than other countries and even if they are out of range they still don't want to do anything until well over range. I would rather pay for prescriptions than not be diagnosed, but as prescriptions are free for hypothyroidism I think this affects the whole diagnosing guidelines.
I do wonder when doctors themselves suffer with hypothyroidism how they get treated 🤔 I’d love to have a GP with the condition so they might actually understand 🙁 not that I’m wishing hypothyroidism on anyone 🙁
Thanks for the link, what an interesting read, such a shame so many people are denied T3 medication who desperately need it to live a normal life. Let’s hope one day they sort this out and treat people with the medication they need, but unfortunately money is always the problem ☹️
My two cent's worth as to why docs are so useless at thyroid is because it's just "too hard" and the professor who teaches it at med school probably doesn't understand it either. When I had to learn all things thyroid in order to save my own life, I had to study full time like a maniac for about six months. I had to learn things that I never had any interest in (particularly organic chemistry) and loads of biology. These are subjects which I abandoned when I was about 13 years old, they were just not my subjects - I am more physics and mathematics.
Now, medics don't seem to have heavy duty analytical minds and the endocrine system needs that kind of thinking because there are so many factors and interacting factors sloshing around. The type of tenacity I had to apply to my getting normal again just isn't going to come from someone else. I fiddled with my dose, I changed my brand, I drove my doc crazy with blood test for this, blood test for that, then let's repeat everything at a different dose... (and just by sheer good fortune, I had a doc who was interested in the thyroid, not good at it but he wanted to understand this dark horse of a subject). I kept up this insane performance for about a year - and got there. It will be rare to find someone who will work with you like this and who has the energy to put up with you.
And that is why I think most docs just do not want to go into the subject of thyroids - it's just too hard, time consuming and takes up too much energy. You are on your own folks, get studying, no matter what your age, you have to build again with worn out tools to save your lives.
Wow, Clarrisa, that is a really good idea. Let me have a good think about that. I could certainly summarize and quantify my path to normality. I would have to think hard about how to defend the statements: "Well if your TSH is low for a long time you can get osteoporosis and heart disease!" Nonsense, but it would be a whole new world of research as to why that myth is just not true.
Let me have a good think. It would be good wouldn't it?
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