Just back from the most frustrating doctor’s appointment that I’ve ever had! Apparently, my TSH (2.3) is perfect, no other thyroid tests have been done. None of the 30+ symptoms on the Hypothyroid symptom checklist are in any way related. My enlarged and very scalloped tongue is a dental issue, and she’s referred me to an ENT specialist to put my mind at rest that my sore throat and croaky voice aren’t cancer, but she thinks there’s nothing wrong with me. In other words I’m a post-menopausal hypochondriac.
I’ve told the doctor that I’ve paid to have a full blood check for hypothyroidism and will pass on the results when I get them back, when she has very kindly agreed to have a chat to catch up, although it would be best to wait until after I’ve seen the ENT doctor.
To be honest, this is the lowest I’ve felt in a long time. I know my body, I know when I’m well, and when I’m not, and right now I am not well. Sorry for the rant, I hate not being listened to by medics, the last time it happened was when a consultant told me I was making a fuss about my rheumatoid arthritis!
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Horsey07
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Horsey don’t ever apologise for a rant. I’ve had my fair share of rants and now have trauma from not being listened too. I often say talking to a wall would be more useful some days. Get your tests done. I wouldn’t copy them to the dr out of spite. She’s not interested anyway otherwise she would have ordered them herself. If u could, change doctors. Why does it have to be so bloody hard. I can hear u saying that from here in New Zealand 🇳🇿
Rant away! Just so you know that you're not alone, I too know how frustrating it is when you don't feel well and the medics that are supposed to help just fob you off. Being disbeleived when you don't feel well is very demoralising and you just feel like you're going round in circles. Unfortunately there are others on the forum with this kind of experience.
I'm in a similar situation of not being listened to and all my health issues being put down to anxiety despite having an extremely low FT4 and now over this year a below range FT4. As yet I'm still not diagnosed despite having symptoms and am awaiting a response to a letter I sent to my surgery.
So it seems I’m also a post-menopausal hypochondriac! ☺
So sorry you are going through this, something that many of us are familiar with.
I know my body,
But, of course, we're not allowed to. Doctor is a god and always right!
I had this a few months ago. I get sporadic tachycardia (no explanation as to why because Cardiology cancels my referral when the ECG is sent in and doesn't show it - being sporadic it's a case of catching it when it happens so it's hardly likely to show unless I'm at the surgery having an ECG when I suddenly get an episode!). A pretty bad episode saw me at the surgery a few hours later, ECG done, duty doctor comes in and tells me to lower my dose of Levo. I said it's unlikely to be the Levo, I've had this sporadic tachycardia for a few years and it's not connected. He argues that I'm overmedicated, I tell him he's looking at old results from a test that was done without any notice and I'd taken my Levo beforehand so my FT4 is bound to be high and my TSH has been suppressed for over 20 years which he'd see if he looks at my historic results. He insisted I was to reduce my dose. I told him I know my body and my history and this is not connected. After asking me 5 times to reduce my dose and me politely refusing each time, he walked out of the room. I honest don't think he would have cared if I'd dropped dead right there and then.
[It was resolved a few days later after me speaking to the Advanced Nurse Practioner (ANP) who knew my thyroid history and my tachycardia history, and after consultation with a different GP I was put on a low dose betablocker. Up yours first GP who walked out on me!]
I honestly don't know how we get around this ignorance about hypothyroidism. I just get my monthly prescription for Levo, add self sourced T3, test privately and know where I feel best and look after myself. It's difficult when it's time for a GP test, and the ANP has now left so I have no-one who understands, just TSH obsessed GPs, so I try to avoid thyroid tests at the surgery if I can.
Horsey, I rant regularly on here and am probably about to launch into another one!!
Here, you are believed and understood by people who have experience of and understand thyroid disease....medics cannot claim that and so they fly by the seat of their pants using only the minimal knowledge they gained in brief lectures at med school to navigate their way out of their lack of knowledge. Result, patients suffer!
Of course, after your life time you know your own body and when it is crying for help, yet medics seem to think they can do this in 10 mins. Impossible!
Yet, try to explain this to them and we become hypochondriacs with an overactive imagine probably fuelled by Dr Google. They forget they had to learn too and that the Internet can be a source of (reliable) information just like their textbooks and lecture notes.....but better!!
It took me decades to discover why my health declined so badly that I could barely function....medics were clueless and I'd probably be dead now or close to it if I hadn't arrived here a few years ago. I self medicate with T3 only and my GP looks on and probably doubts my sanity. I wrote her a long document/time line explaining in detail, with references, why I need this treatment....I'd had enough of being misunderstood. I've no idea if she read it or shredded it but now she leaves me to self medicate and I avoid thyroid tests unless they are sprung on me as happened a few months ago. The results came back ( as I expected) and all hell broke loose, she was convinced I was about to drop dead on her watch! We resolved that.
To be honest, this is the lowest I’ve felt in a long time
OK so the only way now is up!
Post your private results and members will have a look at what is going on. Your GPs chat about those results may not reveal much but the real thyroid experts are here so this is now the beginning of your road to recovery.
It will take time, there is no quick fix for thyroid disease, but you can recover with patience and determination....my case is complicated and it took nearly 2 years but now in my 70s I'm much improved given the damage done by decades of no, or wrong, treatment.
An old medic friend of mine, now long gone, used to say, "Listen to your body...thereafter I always have. Don't doubt that "gut feeling"!
I wish we had the solution to the appalling treatment currently meted out to thyroid patients, it is (I alledge) tantemount to criminal neglect.
I've just recently had a "crash" after a series of stressful incidents and ended in A&E, all tests and scan fine they had no idea what was wrong with me and sent me home with a bag of pills. In the middle of one miserable night it suddenly dawned on me....my cellular T3 level had dropped due to physical and emotional exhaustion. I'm now adjusting my T3 dose and beginning to feel better. No medic would have pointed to that but thanks to what I've learned here I know I'm going to be OK again.
It did turn into a rant.....but I hope something offers you hope that there is light at the end of the dark tunnel.
You're not on your own, we're all here for you. Knowing that helped me greatly!
You haven't given reference ranges, but it doesn't matter in this case. I can guess your GP thinks your TSH is perfect because it is roughly mid-range.
This is not true though - a mid-range TSH is higher than that of healthy people with healthy thyroids, and no known thyroid disease.
For more info on what TSH is "normal" for the healthy see this thread :
I think we should copy ALL the rants here and collect even more of them and then publish them in a book. Not that it would change anything.For some patients the only solution is either the addition of T3 and POSSIBLY the removal of T4 (if it is only causing reverse). I doubt if it will ever be a pharmaceutical. thyroidpatients.ca/resource... This website sources many research papers.
You have to know that your body went wrong for a reason but has the ability to heal if you can remove those reasons. Of course it started in the gut or other entry. There ARE doctors out there who understand and can direct us. There are supplements that are better than pharmaceuticals. Food seems to be a bigger enemy when it is contaminated and processed with artificial ingredients. It is a lot of work but start anywhere and when you feel the progress you will be motivated and it won't be so much work as it will be your mission.
Thank you for that very useful link. We actually grow as much of our own fruit and veg as possible, and I’m a vegetarian. We eat very little processed food.
Very good about your food .......and fruit is excellent and not JUST fiber and calories. Then you might look into any pathogens in your microbiome from other sources. There are many antibiotic herbs like oregano, neem, olive leaf, allicin, etc. Very helpful for killing off bugs. Biofilm is another tough enemy and there are enzymes for that. You have something else going on. There are also food sensitivity tests using stool or hair analysis. You could be eating something, a very nutritious food and even a healthy one that may still be causing a high reaction in your system. That will cause inflammation!Do you think you could try that Spina -thyr analysis app test if you don't take T3? I thought this Canadian website with this nutritionist had some excellent information about taking T3 only. There are so many links it will take months to sort out but worthwhile.
Sometimes - when the medical professionals make a statement, you actually wonder if they've been trained or not. I've found that one in particular has made stupid comments to me and I've said "Sorry doctor, that is not correct".
I believe the lack of knowledge by the UK GPs and even some Endocrinologists that they know very little especially about the clinical symptoms we can have before being diagnoosed or even afterwards.
Re the RA as well. My daughter has this severely as well as hypo but I am glad to say that she has brilliant care from a number of specialists/doctors - some who she has been consulting with for a umber of years.
She actually had juvenile R.A. and the doctor was as mad as a hatter when I mentioned, after several yearsof going to and fro GP due to my daughters symptoms. Eventually I said to him 'my Sister has RA.'. This doctor was then furious with me for 'putting ideas into her head'. Pity he didn't test then (about 5 years of age) as she is now severely disabled due to R.A. and has had many operations.
What a horrifying story. Condemning a child to that kind of pain and disability is inexcusable. I used to have a fantastic GP, unfortunately I couldn’t persuade him to move when I did. My new GP got thoroughly defensive when I challenged her, despite it being clear that thyroid problems are not an area of expertise for her.
My now late husband taught the subject in two universities. I worked in one so I asked some medical students what they thought of him without saying our connection. So I got an ok but he does go on a lot! I translated that to knows his subject but wants to get the message across. I don’t know if things have changed much since I left but at that time lectures were not compulsory and I’ve never understood why! In my time they had 4 weeks of lectures on the topic which mostly covered where your thyroid is and how it works. It was usual for the clinicians further down the line to go into in more detail.
I don’t know if or how things are at the present time but back in the days before automatic slide showing I attended lectures to show the slides. Lectures were not compulsory so why rush in for a 9 o’clock lecture when the sun is shining or you had a hangover from the night before. Even then at that level they were only told where the thyroid was and an outline of its workings. Medics often pick up things at clinical demo’s so occasionally I went across and took a register! Hopefully if they went on to take an interest that would be a miracle!
I hope times have changed but I don’t know but it does make it more understandable that there is lack of knowledge at times.
Medical students also pick up knowledge on ward rounds but I’m sure not many of us have been on the other end of that. And yet our thyroid can go wrong for, I imagine various reasons.
So I feel that goes a long way to explain why our GP’s are not always conversant with our issues. May be we should be more proactive with our issues and ask to be referred, I don’t know what the answer is unfortunately.
My GP phoned to say "my TSH was too low - T3 too high and T4 too low.
My response 'yes doctor that's what it should be as I take T3 only. He then said 'but T3 converts to T4'. "No doctor it is T4 that should convert to T3".
How can we recover our health when the GPs seem to have no knowledge at all about why we patients keep complaining of symptoms.
Obviously one who skipped lectures etc. But yes shocking only starts to cover it. To quote a well known saying-if only they could walk in our shoes! Yes the 4 hours of lectures is probably adequate to explain where the thyroid is and what it does but I suspect only the ones that ask more questions as it may be in the family, really get any further.
Not many of the doctors become GP’s so won’t be looking at us that level. I’ve thought for a number of years now that as surgeries tend to have more partners so that each should have a specialised topic so that many more subjects can be asked about, so knowing you will be listened to and action taken.
A fellow sufferer and I started a group in our city to talk about thyroid issues. It started well, I asked a local large hotel if we could use a small corner in the very large reception and I made sure we bought refreshments. Sometimes we chattered as a group or we split into two depending how the questions panned out but recruitment slowed mostly as many got a better offer and didn’t let us know their plans had changed she we closed it sadly. But we had thought talking from personal experience and face to face would help but it petered out. I suppose it was only as good as the questions it threw up but glad at least we tried and were a help to a few. Thyroid Uk sent us leaflets and some old magazines so hoping some went ahead and joined up.
I think some people who're newly hypo are glad to be able to talk to others who've had the condition for sometime. It may reassure them that they can get back to good health if ONLY the GPs are a bit knowledgeable and give them a proper dose of thyroid hormone replacements.
Many hypo people do recover on levo but others, like myself and on this forum, may not do so. I think it is wicked on the BTA to have withdrawn NDTs - thousands from 1892 onwards seemed to recover their health and it was removed wihout any warning. It must have caused immense stress and worry for patients.
Also T3 added to T4 or T3 alone was also withdrawn, despite people's symptoms being relieved.
I believe many on this forum have lost faith in doctors who're supposed to know best but some have their hands tied if they dare to prescribe T3 only or T4/T3 as T3 has - for some unknown reason - become so expensive in the UK. Why hasn't the BTA investigated why the cost has risen or sourced from elsewhere? They have never suffered with the clinical symptom of a dysfunctional thyroid gland but we expect them to be knowledgeable. After all, did they not choose to select endocrinology?
One of the GPs at my surgery phoned me to tell me my 'TSH was too low', T3 too high and T4 too low'. I said, "I know doctor" and that's because I don't take T4 and I take T3 alone. He said but 'T3 converts to T4'. I was speechless.
It’s so frustrating! I was told for years that I was “borderline” and eventually I went to see Dr P after reading his book. Unfortunately now that he’s retired that isn’t an option for you. You could read his book - Your thyroid and how to keep it healthy - and then self medicate with Metavive (check first if adrenals need fixing). I’ve been doing this for years now and staying under the radar. It’s ridiculous, but sometimes the only way to survive.
Many people travelled all over the country to consult with Dr P. I was one of them.
He was a gentleman and caring and did everything possible to help relieve symptoms.
If members want to read a story, they can read 'Tears Behind Closed Doors' which is someone's long, long journey to be finally diagnosed by Dr Peatfield.
Dr P, due to diagnosing/treating patients as he was taught was pursued as if he was a criminal, so much so that he resigned his Licence so that he could advise patients privately and not be pursued.
Dr Skinner was another one who the world seemed to hate and was put under a lot of stress which I’m sure caused his untimely death. Miss him even though I drove such a long way to see him. He worked in both Scotland and Birmingham but I think semi Teiresias but one day he was asked to look over some thyroid papers which wasn’t his calling but led him to realise we were not getting a decent service so he went out to learn all about the thyroid. Then used his previous surgeries to continue with the thyroid. He was taken to course many times but no judge went against him, we can only guess who did! That’s were I had my ankle reflexes done. He was very thorough and left no stone unturned and because of his great efforts he was up to date and not still in the dark ages! His family asked us all down to celebrate his life and ordered a huge room in Birmingham, it was almost over flowing but we got to know so much about him as a person, we laughed and talked for many hours and celebrated the life of a truly remarkable man.
I was very fortunate to consult both Dr P and Dr S and both had a 'gift' in that they restored the health of their patients. They were also trained around the same time. Goodness knows how hypo people in the future will be treated. It doesn't bear thinking about.
It’s really worrying. Are we supposed to simply rely on purchasing our medication from internet companies and setting our doses ourselves! I need to do some research into doctors who are at least willing to listen and try to help.
Yes - but we should not have to pay for private consultations but sometimes there's no alternative when we feel so unwell.
This is a woman who got the Scottish Parliament to investigate and I believe has been able to change the attitudes to being diagnosed and to be permitted options if not recovering on levothyroxine.
She came onto this forum and didn't need to take her own life, thankfully.
Sadly this is my life banging my head on the desk every time I see my Endo, Rheumatologist, Neurologist and GP they always blame my issues as being either me or something else which is usually another medical department when actually if the Endo would just do his job all if not most of my issues would probably disappear but at last can’t make money off a well person.
If patients from 1892 onwards could recover their health on NDT (natural dessicated thyroid hormones) the very first thyroid hormones replacement made from animals' thyroid glands. Why have they withdrawn it in the UK???? It's safety was well proven from 1892 and without the need for blood tests at all but on the expertise of doctors who knew all clinical symptoms and patients were given a trial of NDTs gradually increased until symptom-free. No blood tests just NDTs?
How can doctors who do not have dysfunctional thyroid glands make decisions of how to treat patients. We seem to have gone backwards instead of up-to-date.
I sympathise with your frustrations - GPs very much appear to be brushing people's symptoms off and even ignoring borderline test results !
Was your B12 tested? Your low MCHC could indicate a B12 deficiency, (microcytic anaemia), as well as swollen geographic tongue, severe fatigue, etc.
Below is latest BMJ research document summary (full document behind a paywall), from which you'll see that there is really no reliable test and diagnosis should be by symptoms, which you definitely have. Oh, and not to mention that research shows 40 per cent of those with thyroid disease go on to develop B12def/PA, which can be serious if left untreated.
Thank you, Polaris. Lots of useful information for me to work my way through. I’ve ordered a full thyroid panel via Blue Horizon, which includes B12 amongst other things. I’ll post the results here as soon as I get them back.
Hi Horsey07❤️Rant away 👍 I feel better when I've had a good rant on here because at least the good folk on here listen unlike many doctors and specialists 😠 I was again over at A&E recently with a resting heart rate of 147 the A&E doc said I was over medicated Without looking at my last lot of blood results, I told him that was impossible as all my thyroid hormones were in good range.. Still he insisted on saying it was over medication, I asked him what my calcium level was "2.59 he said" ... Ha!! I said theirs your answer to my palpitations and heart beat of 147 tremors server bad headache, weeing constantly and drinking like I'm in a desert, it's hyperparathiyroidism, he said "Yr calcium is in range" I said.." So are my thyroid hormones" but you want me to reduce them but my calcium has gone from 2.35 to 2.59 in 4 weeks and Yr not bothered, my heart beat was still at 134 and they discharged me with the instructions, see Yr gp.... Yeah like that will happen, the only way we can see a gp in my surgery is to ring, wait for the gp to ring bk then he/she will assess whether you warrant a visit to the surgery, the world's gone mad!! And we are suffering, I've wrote to my gp with 2 endos I want to see in regards to my hyperparathiyroidism, everything is pointing to this, bloods, scans, A&E visits, and still they are dragging their heels, totally wrong to be treated this way.. 😠😠😠
First of all the BTA removed T3 from being prescribed (although it is stated that only an Endorinologist can do so now (but it is too expensive so will not). They also did the same with NDTs. Both times causing immense worry and strain to hypo patients who had recovered their health with either product..
Just seen as well about may be ending up with PA. My grandmother had PA. sadly no one has thought to tell me I should be tested etc. Thankfully I have a lot of knowledge but many don't so it is worrying that often we aren’t told about other things before it could become an issue.
Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear on the Thyroid UK forum ( healthunlocked.com/thyroiduk/ ) regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being waylaid by the many irrelevant possibilities that web searches tend to return.
I continue to update the document quite frequently!
You might never have downloaded a copy, or not for some time, perhaps months or years If so, I suggest you download a copy and save it (or a shortcut) somewhere easy to find.
Please, if you think there is anything missing or wrong, let me know. Post on the forum or send me a Private Message.
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Is thyroxin a lot more expensive than depression medicine.
Sorry, more blood test result queries! 
Hypothyroid is much more complicated than I thought!
More than 20 trips to restroom last night
