I'm going to apologise in advance for the rant that I'm about to write...
I think I've actually reached the end of my rope, I was back at my doctor today my neck is so swollen that people are actually commenting on it!! I'm totally deaf in my right ear as I said in my last post, my weight has rocketed, my hair is falling out rapidly, the fatigue is unbearable, my skin and nails are bad, it hurts to walk, my mood is low and omg the brain fog is so frustrating and so on my bloods aren't too bad tsh slightly elevated nothing is optimal she offered me anti depressants the last 2 visits I relented and said ok if you think they'll help ok I'll take them and her reply was well no they won't work with that attitude!! And now that my tsh is above 5 it now need to be above 10 for treatment and that yes I have symptoms but they're most likely psychological and there's no blood tests to measure that. I feel like giving up!! I'm beginning to think I'm imagining all of this.
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crazycatlady1901
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You are NOT imagining any of this!!! Your doctor is ignorant! I know there are many doctors like this, but I never imagined they could just disregard symptoms like yours...!
If there is no other doctor you could turn to, there is always the option of ordering thyroid drugs online and start self-medicating. Both NDT and synthetic thyroid drugs can be ordered online, without a prescription. If your thyroid is failing, which both your symptoms and your TSH indicate, you should start feeling better almost immediately.
hi crazycatlady iam in much the same position as others notice my neck yet the gp dosnt. A few weeks ago i bumped into an old friend who said' my goodness whats wrong with your neck' a neighbour also said the same (she had thyroid cancer herself and even felt my neck). The gp keeps referring me to mental health and now for the 3rd time this year mental health have referred me back to the gp as they said theve nothing to offer me.
Yeah that's exactly what's happened to me 😔 I'm really at my wits end struggling to function struggling to look after my kids can't keep a job because I'm sleeping round the clock just don't see the point anymore I've done cbt for a year just finished it last week and I still don't feel any different
Thats what they were going to put me on CBT but yesterday i had a phone call from mental health telling me its not the right service for me so shes writing to the gp who i know will do nothing.
I did I took my aunt and the doctor just went on and on and on about how it was in my head and my aunts like so how does she's fix that then ? And she's like well I don't know there's no tests for that
When i complained at my last surgery I told the receptionist that a certain gp should book himself an appointment with mental health. I made sure the rest of the surgery heard too. The receptionist then passed me a complaints form.
Never ending circle! I have statement from two psychiatric that no ad's for me as I am not ill because I am anxious, I am anxious because I am ill. They have clearly stated that my issues are physical and before my physical health is under control there is no point for therapy as I might not even need it.
When in deliver these paper to GP I get kicked out and they raise their hands getting frustrated that I have had the nerve to go to psychiatric on my own which naturally makes GP look like an idiot because they thought they solved the mystery.
Annoying isn't it? Suddenly GP 's think they are smarter than psychiatrics.
Can't believe she said the attitude thing about the antidepressants. Attitude has nothing to do with whether they'll work, so if she thinks that's key she truly is a numpty. Time to see someone else in the practice - or another practice altogether...
Plus has she checked your Vit B12, ferritin, Vit D levels?
My money's on it being your thyroid but self medicating is a big step (I know because that's what I do). Definitely something to think about though.
Actually according to studies attitude plays a big role. So like SSRI is mostly a hoax. People think they will get better taking them and they do. Doctor can congratulate themselves and tell they were right even though the pill itself had 0 effect. Placebo effect is strong medicine.
But for some ad's really help whether they believe it or not as they actually had ongoing issue with brain chemical.
From what I've read, they may act as an adrenal stimulant. So they can give knackered adrenals a kick and that's part of how/why they work. But the truth is, they don't really understand why they work. Everything in the research says "SSRI's *may*..."
Let's compare that to something like, ooh, T3. We know how that works ladies and gentlement but they so rarely give that. I saw something a while ago about there being no such thing as a Prozac deficiency. And yet many doctors behave as though that's what the problem is!
Yeah I have read about it too just recently, and that the awful withdrawal symptoms could actually be down to adrenal fatigue and thats why before weaning off of ssri one should start supporting their adrenal glands. And the studies about side effects, I think it was upto 90% who complain about loss of libido and 40% of all users will have problems with the rest of their lives even after weaning off. That is one of those side effects that have far too big impact for ones life as it might ruin your relationship and make it harder to start new ever again. Naturally bone loss, which is far more possible using ssri's than T3 should be ringing bells too.
Not long ago it was on the news over here in FInland that they admit they have no clue how ad's work. To me that sounds something that makes me want to run away, not to use them widely and approve it as a standard treatment to any illness doctors are to lazy to figure out.
Ugh.
And then WHO is worried about depression becoming the biggest health issue in few years. Of course doctors want to prescribe more ad's, but is none of them capable to actually read the studies about increasing numbers of autoimmune diseases, vitamin and mineral deficiencies etc that cause depression! Could there be a connection between them. Of course not, bah humbug.
Sorry I got carried away But this annoys me so much lol.
Well, if she thinks antidepressants will work as a placebo, then attitude certainly is significant. It also says considerably more about her attitude to you!
I went through all of that 20 years ago. I'm aghast it's still happening. I saw two psychiatrists (one as in-patient), depression, high anxiety, always sleeping. In fact only today my 35 year old son who I have a fractious relationship with, said in a nice way - well you were always ill mum. Heartbreaking. You have a goitre, therefore very low thyroid. As others have said, you could change GP or GP practice but in my experience it doesn't get you very far & a whole load of hassle. You could take someone with you to GP for support & be assertive & ask for an endo referral. Or, as in my case, circle around the whole lot and self-medicate. You would get loads of support here if you do self-mediate. Very best wishes x
Yeah exactly what my 12 year old says to me, "we never do anything or go anywhere because your always ill " she's basically became my carer an has to help with her brother all the time because I can hardly function
Do you have a thyroid support group anywhere near you? There are lots of people who self medicate it might help to meet some people and have a chat, self medicating is a massive thing but you need to remember, everyone on this site has either struggled to get a diagnosis or decent treatment after diagnosis or both! You will be hard pushed to find one single person who had a timely diagnosis and then got adequate treatment. GP's are at best ignorant and at worst neglectful when it comes to thyroid problems. By the time mine was diagnosed I was 8 stone heavier had developed T2 diabetes was clinically depressed and to be honest actually thought I was dying of some mystery "body slowing down" disease, in fact there were times when I hoped I would die just so the struggle would end. All this whilst raising three children and trying to keep my failing marriage together. If I had the knowledge 20 years ago I would have definitely self medicated. Because my life at that point could not have gotten any worse!! Everybody's story is similarly shocking, what are your options.....
Change your GP
Or take control and change your own life....
If you do decide to trail the NDT you have and you see improvements it might be a way of proving to your GP it was your thyroid, take advice from the experts on this site about starting doses ect.... Sadly you are probally fast approaching the time when you have nothing to lose........
I am at that point I'm tired of being sick and sick of being tired!! I'm waiting on Ndt arriving but was really worried about self medicating incase it was infact just in my head but reading all the comments has now actually made me feel less pathetic and more determined to get myself well and if that needs to be on my own without any help from my gp surgery then so be it as I literally have nothing more to lose. I trained so hard for a career that I love that I can no longer do as my body won't allow I've spent the last 3 years feeling like a failure professionally and in my family life. Enough is enough
I feel so much empathy for you I know exactly how your feeling, it's the "been there done that got my tee shirt" scenario, I never understood why GP's are willing to leave us until we are literally half dead before treatment is started. I had been going in and out of my Drs for 8 years had all the classic symptoms my mother was hypo. Some of the causes I was told ..... I was
Depressed
Stressed due to marriage problems
Working too much (2 days a week)
Lazy
Eating a bad diet
Needed to excersise
Run down
A hypochondriac
It's truly appalling it was eventually a locum who ordered the blood test and diagnosed me!!! Yes given the option and information self medicating would be my path .... Keep us posted on how it goes
The only dr who listened to me was at a walk-in-clinic. My regular gp had stopped my levo as apparently my thyroid healed. I asked her if that was the case what should I do to keep it healthy. this was her rude answer 'If you want to carry on taking some-thing then you can go to the chemist buy yourself some B12 and take them'
Hi again,I've just read your post about 3 months ago with your story. You may have posted before that, not sure. You say for 3 years you've had symptoms & around pregnancy time. My thyroid problems started with pregnancy & was diagnosed when he was 8 months old, but the bloods did show very very low (maybe I was lucky after all but they couldn't get my meds correct.) You DEFINITELY have a low thyroid and you won't feel any better without some type of thyroid med. You should now decide whether you are strong enough to continue battling with the NHS (GPs or endo). Even if you did see an endo, you can't predict the outcome. I saw a Professor endocrinologist in a Birmingham teaching hospital (2005) and he was a complete waste of space. My personal view (after 35 years of having hypothyroid) is that you could go on another 10 years trying to get the medical profession to do what's necessary; you will lose precious years, get utterly frustrated and despondent. This site can give you a list of both NHS and private endocrinologists who have been recommended; you may strike lucky with an endo. That is the only route I personally would recommend to you if you continue without self medicating. PM me if you are want to rant! Hugs x
Thank you marigold22 im not going to fight with the NHS anymore im totally done being spoke over spoke to like a child and being told this is psychological, I want to self medicate but I'm put off with the fact I have dyscalculia (number dyslexia) and I don't really fully understand ranges and stuff because of it and my t4 and t3 ranges aren't the worst I was thinking that I should maybe have my rt3 tested first
I had every type of dyslexia going when I was under medicated. Don't be put off self medicating because of that. Perhaps you have a good friend or relative who could help you, but all you would have to do is write the numbers from your blood results and send them here for others to interpret. Ranges and all the info here is very complicated to understand, particularly when one is ill. I'm only just beginning to understand it and I'm optimally medicated now. I'm not 100% sure what blood tests you should get, others here will advise you. You do need Vits B12 & D, ferritin, folate as suggested above. x
At the risk of sounding frivolous have you thought about going to A&E?! or going to a walk in NHS centre if you are near a city. I know that NHS is deteriorating but hadn't realised it was that bad. Hope someone takes notice and treats you soon.
I was thinking of maybe going to the out of hours service with my throat as I feel like I'm choking and air hungry like there's something lodged in my throat, but after today I don't know because when I said about my swelling my doctor smirked pressed down on my tonsils (not even where I'm swollen) and said nope it's all fine I might give it a try suppose it couldn't do anymore damage
Its been like a twisted game for weeks!! Will I / won't I give you Levo?? Antidepressants ? It's your attitude, its a rut, your body will adjust to your symptoms, its your past, its depression, its psychological, it's in your head, you need to try pacing. but come back and see me in a week!.... Why? So we can go round and round this demented circle again???
I ended up in A&E two years ago, though I admit that hospital has a bad reputation. Ended up being referred to an endo who knew far less than me - he couldnt interpret blood results. So if you do go to A&E you would probably get even more ignorant comments and very unlikely to confirm you have under active thyroid. They are great with broken bones but not thyroid. Which area do you live?
You could ask here if anyone can recommend an Endocrinologist in the Glasgow area, but as I said, there are loads of poor quality endos. You are in a very poor state of health and cannot continue like that. You shouldn't be expected to. I have been in exactly your situation & it seems no way out. There is though. I personally would buy some levothyroxine which is T4 hormone for low thyroid. I can't advise you on where to get it or how much to start with. You can post that question here for others with the knowleddge. Big hugs x
The worst part of having a doctor with that attitude is that it makes you begin to doubt yourself. We know what is wrong with us, but it seems almost surreal that someone who trained to help patients feel well would take such delight in denying us treatment and/or validating our thoughts and feelings. My family have been telling me since I got ill last year that the docs just don't want to admit they are wrong. I just couldn't believe they would put their egos above the welfare of a patient, but I hear so many stories like yours, and mine, that I am coming to the conclusion that it must be true.
I echo what others have said. If you can't change to another doctor's surgery, I would self-medicate, using guidance from the knowledgeable people here.
Looking at your blood test results from a previous post they look good, but you clearly have hypothryoid signs and symptoms. The only way to demonstrate whether or not your symptoms are due to hypothyrodism is a trial of thyroid hormone, perhaps 50 mcg levothyroxine for three months. There is clearly a disjoint between your blood hormone levels and your symptoms, thus I wouldn't be hung up on the blood test numbers. It's incredibly difficult but try and get your GP to give your a trial of levothyroxine, digging your heals in and not moving is a good tactic, they are short of time and often will do anything to get rid of a patient. (It shouldn't be like this, it's not the GPs fault, they are mislead by endocrinologists).
I very stongly suspect you will need some liothyronine (L-T3) in the future but it is much better and easier to try for levothyroxine for now and see how you progress. Don't let the doctors get you bogged down in the thyroid blood test numbers, keep them focussed on your signs and symptoms. Levothyroxine is increadibly cheap and safe, a trial is not unreasonable.
Could anyone recommend a sympathetic endo in the Leeds or Yorkshire area ? After 33 years of doctors that don't believe I still have hypothyroid symptoms while taking thyroxine, I am thinking of self medicating, anything to try and function normally . I have been referred to an endo in Bradford but not received an appointment yet and don't hold out much hope of his attitude being any different . Thank you
Can't believe someone else has waited 30+ years to get well. Me too, would love to sue them. You can get a list of recommended Endos (private & NHS) from Louise Warvill Thyroid UK. Or buy some T3 yourself and try it. Many people here will PM you with where to buy. T3 was the making of me in the end. x
Thank you everyone, I've atleast woke up feeling less pathetic and more determined today and I'm going to try Ndt because let's face it I have absolutely nothing more to lose.
You go for it girl! Grab YOUR life and make it better. Once you get "mental issues" written on your notes, that is all they see - you could walk into the surgery carrying your head under your arm and they would still say it was a mental issue. I went once to the surgery with a T shirt which read "I am a martyr to my hormones" but it did not even cause a raised eyebrow. I hope you feel better soon.
Exactly, and all the while you are being left to suffer. I had never been so unwell in my life, I was off work fro 4 months. I have no regrets about doing it myself
Yeah I'm on b12 injections and I take folic acid but my ft4 is 16.67 (12-22) range and ft3 5.56 ( 3.1-6.8) range so there not bad that's why I'm confused lol
I was first told my thyroid was "borderline" back in 1990(ish). I wasn't given any numbers so I don't know what my thyroid was really doing at the time.
I was given my first prescription for levo in 2013. It was only for 25mcg and it was given very reluctantly indeed. The doctor wouldn't increase my prescription. Instead she wanted me to see an endo because I was "subclinical" and didn't really need treating. *rolls eyes*
Doctors will keep you hanging on, stringing you along for ever if you let them (like I did for 23 years). I'm sure it is no coincidence that during those years I was prescribed four different kinds of anti-depressant, all SSRIs, none of which made any difference, and in some cases made me very much worse. Jazzw mentioned above that SSRIs give the adrenals a kick. I suffer from high cortisol and probably have done all my life. So no wonder SSRIs often made me worse.
Do I regret allowing doctors to make me suffer? Yes, a million times Yes!
Do I regret self-medicating and learning how to treat myself? No, a million times No!
If you use NDT it is important to use prescription grade NDT with known T3 and T4 content and not 'thyroid glandular' which may or may not have hormone in it.
Do not give up - say you want to be referred for a second opinion to another endo and remember YOU are the patient - you know your body better than anyone.
With a TSH of above 5, your symptoms certainly aren't psychological. You were actually hypo when it hit 3. But, doctors don't know that.
I agree, time to start self-treating. It's not that big a step, just seems like it. And, if you don't like it, you can just stop, no harm done. Just start low and work up slowly. Stop increasing when your symptoms are all gone, and stay on that dose.
But, you do need your vit D, vit B12, folate and ferritin tested, because these are all very important for the way your body handles the hormone you give it. Plus, if these are low, they will be adding to your symptoms.
And, there's always someone here to help you. So, why not give it a go instead of wasting your time and energy arguing with ignorant doctors.
Doesn't matter about your bloods, everyone should start with about half a grain, and increase by half a grain every two weeks until you get to two grains. Then stick for a while to see how you feel. Then get labs done to she how you're doing. After that, if you still need to increase, increase by just a quarter grain each time.
The object is to keep increasing slowly until your symptoms are gone, and then stick at that dose.
Just present with your swollen neck and deafness at first ......... and only move onto the rest when you are in a one-to-one with a doctor or nurse. Stay very calm. Make a succinct list of your supporting difficulties [which you can refer to], delivered in a very matter of fact manner so you avoid any risk of sounding hysterical ........ which could blow your credibility! Sounding overly knowledgeable about your test results is NOT a winner either. This latter is always the danger when you are feeling ill and are distressed by the lack of empathy and support from your G.P. However, the danger is that it will put off the A&E doctor with whom you want to stay onside and establish a professional patient/doctor relationship.
Bursting into tears is OK when you are told what is really wrong with you and help is offered!
So scientific! If attitude to your meds is the difference between them working or not working, they must be no more effective in themselves than a glass of water. +
So sorry you're having these problems...but I can totally relate. I live in the US and the doctors here are morons, too. I have recently switched from a female doctor to a male doctor, which I have an appointment with on the 13th of June. I'm just hoping that he has more common sense than the woman doctor has, but who knows? The people on this blog are wonderful and will give you really good advice. Don't let the doctor make you feel like this is in your head, because it's not. I was prescribed antidespressants for years and years and took them. I will NEVER take them again, so be careful. They can cause a lot of problems.
I'm not wanting antidepressant 😔 I have took them in the past and they didn't agree with me, I just agreed to get her to stop talking at me, I'm not depressed and would have absolutely no issue admitting it if I was but I'm not, I hope you have more luck with your new doctor.
Hi I also live in Glasgow and have not had much help from Drs or Endo! I have started to self medicate with ndt about 6 weeks ago and not seeing too much of a difference yet. However I have been ill with thyroid problems since I was 13 years of age- goitre, half thyroid removed, then full thyroidectomy in 1988 and have been getting sicker and sicker since then! Gave up my professional career etc the usual story! There is a Glasgow support group who meet in Waitross cafe in Newton Mearns twice a month. Perhaps someone here can give you more details? I also met the wonderful Lorraine Cleaver who has given me great advice and HOPE that I can get better! So I am sticking it out! Please listen to advice from people here! Thinking of you X
Anne-M omg I'm so sorry that is horrendous!! doctors should be ashamed of themselves the way they treat patients with thyroid issues is disgusting I hope NDT works for you in the long run its just sad that so many people have to fend for themselves in these situations. X
Thank you cat Lady! Self medicating can be scarey but myself and others feel we now have no option! The other problem with me is I have brain fog which makes it really difficult to understand all the research, but I keep at it! Good luck on your journey and be reassured that you are not crazy or alone. I hope to get along to one of the Newton Mearns meetings and I hope see you there! X
Oh I hear you on the brain fog that and fatigue are my worst symptoms they are horrendous, the weight gain and lack of hair are just about bearable, yeah I'm going to try and get along sometime 😊 X
Oh dear, I have the same problem. 30 years was dealing with ignorant doctors in Russia and Canada. Finally found holistic doctor from us. First we changed my diet, gluten free, no food after 6pm, vitamin C 4000mg dayly (that was extremely helpful), bcomplx, iron, aloe were. .. some other supplements. ... I see the hope in the end of tunnel! Please Find naturopath doctor. Don't give up!
Hi all I'm new here. I just read your heartbreaking story Crazycatlady and it pretty much mimics mine and as I can see from the responses so many many of us. I'm so very sorry you are going through all of this. That doctor is a complete and total moron! You are at 5! you darn well should be treated for hypo. The range was change years ago to 3! I think you are absolutely right to self treat. Start slow you should probably end up around 2.5 to 3 grains a day. Break it up 2 to 3 times a day it works so much better that way. I Hope you feel better treating with the NDT. I've been self-treating for a few years with NDT from Thailand and according to my blood results at doctors it's working as well as Armour or Np Thyroid did. Still I've never felt great on this medication or I'm hoping I can feel better. Does anyone know if there is a safe place Online to purchase just a T4 medication like synthroid or levoxyl? I think I need a little more T4 and a little less T3. I can message anyone with were to purchase good reliable T3/T4 if anyone needs that info. It's probably the same place everyone else has been getting theirs. lol Thanks for any help any of you lovely ladies can give me. I hope everyone is feeling better soon!
Sorry to hear that you're going through what I went through too as I know just how terrible it feels to be treated like a malingering idiot when you're actually ill
B. state that if you're sub clinical with symptoms you should be given trial of levo
I'd suggest writing into complain about the doctor not following rhe NICE guidelines and to see a different GP. I only got a diagnosis because I changed GP practices (as my last practice had decided I was an alcoholic that fabricated my food and exercise diary as it was impossible to be THAT FAT on calories that low - I am partially quoting)
CHANGE YOUR GP! I'm so sorry you are feeling like this..i too am at the mercy of a ridiculously high paid guesser AKA so called GP.....listen to the people here they are not experts but they have trodden this miserable road and have a lot of experience....im still struggling and its taken 18 months of utter misery and wasted visits to doctors and endocrinologists....im having to find my own solutions but its doable with people from here to support you....seriously i cannot stress this enough change your doctor...and for what its worth i was 'parked on Antidepressants for fkn* years!! there is now empirical evidence to suggest that this may actually be part to the cause of thyroid disorders...! funny how this stuff is carefully hidden from public view! i am not on any medications now apart from armour thyroid and vitamins....my hair loss is chronic i still lack energy i am now in range but its upper limit of normal so i have a way to go yet...
good luck my dear.....theres lots of support here xx
Hi CrazyCatlady21 , not 100% but I'm pretty sure you might have Hashimotos Thyroidits - look into the symptoms - brain fog and crazy mood swings were two of my main symptoms from Adrenal Fatigue and all my symptoms expect hair loss have gone away by giving up gluten and dairy but gluten is the main one!!
Anyway if you've any questions I'd be happy to help xxx
I kept being told that I was causing all my own symptoms because i was overweight; I pointed out that the weight was one of my symptoms and was told that my food and exercise diary was a tissue of lies as nobody eating that little could be putting on weight so I was obviously missing off several bags of family size crisps and chocolate per day that I was eating from the diary.....
I moved GP practices and was diagnosed (without an elevated TSH) within 5 mins of my first appointment. Before I moved I asked everyone I knew in the area for a recommendation of a GP; one of my friends with what can only be described as a challenging personality, recommended her practice and I moved.
Perhaps you can ask for local recommendations from other people on the forum to get someone thyroid friendly?
The best bit was when my new GP diagnosed me from symptoms I told him he was wrong as the other quacks had been dismissing it for nearly 7 years. I'd been so worn down by them (thyroid issues run in my mother's family and I was the only female in the line from my Gran over 35 that allegedly had a fully functioning thyroid) as I'd been asking constantly whether it was my thyroid and being told that it was completely normal that I'd been brain washed into thinking my thyroid was fine. BTW - my FT3 and FT4 results had been below range or sat 0.1 over the bottom end of the range for the 7 years but my TSH was around 1.2; so previous quacks had never read about secondary hypo.....
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But this annoys me so much lol.
but they couldn't get my meds correct.) You DEFINITELY have a low thyroid and you won't feel any better without some type of thyroid med. You should now decide whether you are strong enough to continue battling with the NHS (GPs or endo). Even if you did see an endo, you can't predict the outcome. I saw a Professor endocrinologist in a Birmingham teaching hospital (2005) and he was a complete waste of space. My personal view (after 35 years of having hypothyroid) is that you could go on another 10 years trying to get the medical profession to do what's necessary; you will lose precious years, get utterly frustrated and despondent. This site can give you a list of both NHS and private endocrinologists who have been recommended; you may strike lucky with an endo. That is the only route I personally would recommend to you if you continue without self medicating. PM me if you are want to rant! Hugs x
Doctor says I should give up on thyroid being the problem....
Newbie - do I give up?
Results, now I feel flat, deflated and ready to give up!
