I had a telephone appointment with my GP today. He told me that my blood my TSH is elevated and that I need an increase of liothyronine. I told him I have an appointment with the Endocrinologist in a week or so, hence the blood test.
He then asked me when I was going back to work as I have been off for quite a while.
I'm afraid I got cross.
I said to him that for over 18 months, I was gradually getting more ill with the levothyroxine. He only referred me to endocrinology when I told him I was going to stop taking it. In the meantime, my blood pressure went up, my cholesterol went up and I became pre-diabetic, all after being diagnosed hashimoto's hypothyroidism.
It took another 6 months and a change of endocrinologist before I was put on liothyronine. I have been so so weak and fatigued etc etc.
I told him I have only recently been able to stand in the kitchen and do a bit of washing up, without having to go and lie down due to feeling so lousy. I told him I cannot get out of the bath without help. I told him if I bend down, I need help to get up.
He then said that he cannot keep giving me sick notes, and will I be going back to work in two months.
I told him I don't know yet. I'll go back to work when I'm better. Give me a break, I said.
Which he took offence at!!!!! Der.
Does he have no idea how ill I have been?
Sorry to moan, but I have also had depression and anxiety and been waiting for a referral from my local mental health team since June 2022, and am still waiting. They have said there is a long waiting list.
However, maybe it is all due to lack of thyroid hormones and I will improve when I am optimally medicated.
Just wanted to vent.
Has anyone else experienced this?
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DandyButch
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I was started on 5mcg liothyronine 2 x daily in February this year. It was increased to 10mcg 2 x daily in June. I already take VitD. I know my B12 and folate were low, but ferritin was high.
But because they were all within Nice guidelines as within normal range, gp won't do anything.
My next appointment with the Endocrinologist is in a week or so.
If your Endo is a good one how about he/she writes to your GP, stating time off work to recover. Generally these things are reviews every two mo ths or so. So your Endo could say your not fit to work and will review ay your next app. GP is probably under some pressure from someone higher up. Doesn't excuse callous behaviour but I haven't noticed much care going on recently in GP surgeries.... Lol.You don't need a doctors qualification to see that you've been to hell and are having to climb slowly back. Big hugs ❤️❤️
What bedside? It was a telephone consultation, which grossly lends itself to even more of a power imbalance.
I’m sorry you are going through this DandyButch . All I can tell you, my crippling anxiety vanished once on treatment and t was a massive shock. I do believe after years of misdiagnoses and missed opportunities, once diagnosed we should automatically be fast tracked for some specialist therapy to manage the shock and trauma of it all.
As for the waiting list, I presume it’s talking therapies. The waiting list can typically be anywhere between 12 months and + in a lot of areas. You maybe offered some online type thing self directed course instead. Beware, if you do take it up and your symptoms improve (as gained from thier scoring symptoms system) you will no longer be on the waiting list for the actual therapy.
In my area CBT is all they offer now, gone are the days of psychotherapy on the NHS. Frankly its MH on a budget. CBT might help some but its touted as a cure all, which its certainly not.
Certainly isn't! I remember years ago being referred and saw a clinical psychologist who said after a bit he was sure that there was an organic cause as my mental health was good. Back then I was stuck on a TSH level that fell just short of being over range so 'alls well' NOT! But the Clinical Psychologist was spot on! Still had to wait for my TSH to cross the magical cut off point... Then hey presto diagnosed and treated pronto. Getting optimal was another story!
How did you manage to get optimal after treatment?
I have not been as fortunate with mental health professionals or doctors. Despite insisting that my hormones needed attention, 30 years ago, and again 2 years ago, no-one supported my opinion. They kept asking if I had had a bad childhood, or had a trauma in my youth, which would be easier for them to treat, probably. I kept repeating that I had a good childhood.
Why don't they listen and believe the patient. Surely we know our bodies better than them? Oh yes, we are stupid, and they know more than we do.
I have asked if I can transfer to another GP in the surgery, but they said no, they are all full.
Hello DandyButch. I really feel for you. I managed to get optimal because I went private and saw an amazing kind specialist called Dr Skinner. He was old school and was taught to treat by signs and symptoms before the dastardly blood tests and ranges ruled. He recognised the classic features of Hypothyroidism the minute I walked into his consulting room: Moon face, slow pulse, bloatedness, slow speech, etc. I was by then very ill (as he wrote in his notes) because although I'd eventually been started on thyroid treatment, I'd been left on a starter dose for over a year and was grossly under treated. I was on the verge of loosing my job and as sole income earner with two children to provide for & mortguage to pay it was a very serious situation.
I'm eternally grateful to him, he got me better and eventually I moved across to NDT after trying the synthectics. That was a light bulb for my body and felt instantly better. I kept my job and my home. Sadly we lost Dr Skinner, may he rest in peace, he helped so many..... and as I couldn't get the NDT on the NHS I ended up self treating for a few years until I found a GP Surgery who would.
In the middle of chemo though a few years later I had to seek a NHS Endo so that I could keep getting NDT on the NHS as part of new NHS regs. Another kindly knowledgeable Endo agreed I needed NDT Sadly that NHS Endo has now retired.....
However it was on here that I learnt about the Co factors and for me the biggies was B12 &, vit D, eventually got B12 jabs on the NHS but again self treated until I did. That and going GF.
What I'm saying is I had to move beyond GPs as most but not all did not listen. None of them understood the impact of Hypothyroidism and largely couldn't recognise by symptoms or signs, a couple were kind and realised I was ill but didn't know what to do or had their hands tied by NHS pathways. Infact I have found in general GPs do not really understand chronic long term conditions and have learnt to politely to stand up to their nonsense. It's not easy
I'm so so sorry you've been through all these years of suffering. If you haven't already read Barry Durrant Peatfields book called Living with your Thyroid it's a great D source of info. And this forum is great with many very knowledgeable people on here. You will be more informed than GPs. They call such patients Expert Patients. Knowledge is power & that book and this forum helped me to stand up politely to the many doctors who know so so little about my chronic conditions & recconise when I was being spun nonsense.
In many cases I'm sad to say I am well now not due to GPs but despite them. I've led them not the other way round. I don't mean this unkindly but it's the truth. Stay strong: you can get better.
hi Waveylines … you could be writing my story … I have the same journey and saw Dr Gordon Skinner too … god rest his beautiful soul.. he saved me when he put me on NDT … many years ago but I am now on combination of T4 T3 with another endo. I am pleading for NDT but am in a trial of t3 which I have now been on for about 22 months. Some benefit but not to the degree of NDT. I also SI b12which has helped and use cofactors methyl folate vit d. Found this site invaluable and thank everyone everyday for their generously sharing knowledge.
Sorry to hear you trod the same road.... Lol. Thank heavens for Dr Skinner.... Bless him! I still don't know how I drove to his Birmingham clinic and back.... On reflection don't think I should've been driving.
Oh Nooo re the the T3/T4 trial. Why have you been taken off NDT if it suits you?
I couldn’t get my GP to prescribe and couldn’t do the journeys to Birmingham although he did have a clinic in Stafford for a short while. So I got back into the t4 only via GP … all many years ago and downhill from there. When I looked for Dr Skinner again … desperately wanting NDT I found he had passed away. Now with endo who will prescribe t3 and am hoping I might be able to get NDT with him although he’s still reluctant and as I have felt some improvement on t3 with t4 and cofactors vit d b12 …. I’m still feeling fatigued foggy and walking in mud … so still looking for the needle in the haystack. I’m now medically retired from my nursing job - but looking for answers. Thanks for your reply
Dr. Skinner was brought before the 'organisation' for prescribing 'other than levothyroxine' but I think that many people don't feel much better on Levo.
I, myself, had severe palpitations when on levo but they disappeared when I was prescribed T3.
Since Dr S's demise, his staff collated all of their 'scientific' eveidence and hope to publish their scientific findings but, unfortunately, they need a large amount to do so.
How on earth can doctors, who have a lot of training, be so ignorant about thyroid. It is incredulous that in 2023, with the many sources of information that are available, that they can be so narrow minded. It makes you wonder what else is lacking in their supposedly 'brilliant' training.
Are they taught that all patients are hypochondriacs? And just need a placebo to improve their health?
Yes, I would like them all to experience the misery of, in my case, hypothyroidism. Although I am sure hyperthyroidism is equally tough. Also, that they struggle to get the correct treatment at a time when they are struggling with the awful debilitating symptoms.
They are taught to go on blood tests only, not taught signs and symptoms. In recent years the blood tests have been reduced to just TSH. Unless that's over range then the labs may or may do a Ft4, very rarely Ft3. And to add to this the TSH level for starting treatment for hypothyroidism was massively increased to a TSH of over 10.....not based on any solid bundle of research evidence, just arbitory picked!! GPs are taught that the TSH must stay in range so many think a TSH of four or higher is 'fine' and don't increase thyroid treatment to lower the TSH. They are taught Levothyroxine is the main treatment and patients should not need Liothyronine. As for NDT it has a big fate red cross through it. This is why GPs don't need to see you face to face anymore as they 'see' everything with the blood test result even if it is only the TSH!! 🙄 Sorry I have zero faith in GPs. Maybe there is the odd gem out there, am yet to meet it if that's true.
I'm telling you it won't need much knowledge building for you to be more informed than your average GP re Hypothyroidism.
I have often wondered why the medical profession and NICE have steered away from NDT, which, as far as I am aware, was used for decades to treat hypothyroidism , based on symptoms. Question.....
Could it be anything to do with certain cultures not eating pork, or vegetarianism, or veganism, or pushes by big pharma to use chemical rather than natural product.
Big pharma and some very arrogant Endocrinologists who dug themselves a very deep hole with their condemnation of combination thyroid hormone treatment and don't know how to back out of it. I've no idea how it will ever end..... except if some eminent Endo reinvents what we know already.... Lol
I think that doctors are blissfully unaware that misdiagnoses and wrong or no treatment does not just affect health and quality of life (and even that is a strain on their brain) but that it can have far reaching consequences for all areas of life. People lose their jobs, can't finish their education (with future consequences on income etc.), end their relationships and some take their lives because they can not cope. If they have no support system, like this one, they live in total hell and with little hope. I wish we could send these careless doctors through that for even just a couple of months, so that they get a feel for what it is like and step down from their pedestal of superiority and arrogance.
I had CBT for both perfectionism and insomnia on recent years. It didn't help and I had no faith in the therapist. The reason was I know what a proper psychologist and psychiatrist are like as I was in hospital 4 months and 3 months 27 years ago. I was an outpatient, and then an inpatient on a psychiatric ward. I now think this was either thyroid or B12 deficiency related. I also had a wonderful therapist, all on the NHS.
I fail to see how CBT could possibly help with insomnia, a positive mindset only takes you so far. As someone who has suffered with insomnia on and off for years I'm afraid my reply would be unrepeatable if some numpty had asked " have you actually tried going to sleep".
I seem to remember I had sheets to fill in - same as for perfectionism - I didn't reckon it much. I think there was a sleep diary to keep as well and being regular in sleeping habits. Didn't work anyway 😂
Most of us have experienced it, I imagine. They have no idea how it feels to be under-medicated. What's more, they don't care. I don't even think they believe us and consider us all to be moaning hypochondriacs with mental problems. Yes, we have mental problems! All sorts of mental problems: depression, anxiety, memory loss, paranoia, claustraphobia, agoraphobia, dyslexia, etc. etc. etc. But it's all down to low thyroid hormones in the brain - the brain needs a lot of T3 - I even believe that my poor spelling is down to being hypo! But they have no idea about all that. All they care about is the TSH, and as long as that is somewhere within the irrealistic range, then for them, there's no problem. They haven't a clue!
Yes, I would be upset, too. You did well to tell him exactly where he got off! Not enough patients do that, so doctors think they can just say what they like!
Next time someone, a GP or anyone, makes you feel this, own it. I implore you to say aloud “yes, it’s all in my head, because mental health symptoms are very much part of thyroid disease!” 😠 this has made me so mad to read. Sorry you went through it.
Of course, and it is not my intention to invalidate that. I believe, I hope, you will find yourself in a fighting spirit soon however unfair it is that we need to fight anyway.
I also hope there is more than one GP in your practice and one that will give you the fit note. Otherwise, another health professional can such as the endocrinologist or others involved in your care. I believe not just GPs and Consultants can give and sign fit notes.
Me too, Graygoose! (A professional writer, that is.) I've found docs here in the U.S. get very defensive when they realize how much I've written about medicine and who I've written for. Most don't appreciate an informed educated patient.
Oh most of them hate an informed patient! They like docile, obedient patients that do what they're told an don't argue. They do not like being asked questions! Mainly because they can't answer them! lol
My stock answer to my suppressed TSH is it's not a thyroid hormone and combination thyroid treatment always suppresses TSH. The important thing is, are my thyroid hormones in range? (That's floors them because they are......) They say yes. I say. Well there you are all is well then! Smiling sweetly. End of discussion...
Unfortunately my Free T4 is suppressed as well, because I can't take anything with T4 in it without a severe crash. But my Free T3 is always in the top quarter of the range. That's not satisfying to them. Ugh.
I sympthasise Rileyfloof.... Lol.Your body your choice. I tell my GP that too.... Patient choice. There's not a lot they can say than that but to mote it on their files....so they can't be sued. Which you can now see on the NHS App Xx
Has GP agreed to test vitamin D, folate, B12 and ferritin levels before endo consultation
Obviously essential to test TSH, Ft4 and Ft3 together…..has GP done this
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and (if go back on levothyroxine) last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I've been I the exact same position. Bedridden and housebound. Didn't even have any energy to lift myself up from the chair. Once on t3 only things changed and that first dose I took was like a light bulb being switched on. I can only take 1 dose of t3 daily as splitting it has no effect whatsoever. I just listen to my body and when the chronic fatigue, all over body aches and just a dreadful overall feeling crept back that was my q to up dose. The next morning within an hour of taking increase I would feel normal again.
8 years on and through a bad time with perimenopause I'm now finally balanced with both my sex and thyroid hormones.
Do have to say only on starting testosterone did I finally crack it and this gave me the energy to start exercising again, weights. Only recently started to lose weight when for years no amount of calorie deficit or exercise worked. Having fatty liver, likely insulin resistant, high cholesterol, told years ago I was pre diabetic and larger proportion waist to rest of body so metabolic syndrome. I started berberine the start of June and almost certain this is reason for now able to gradually lose weight. Not that it's that that's made me lose the weight but that berberine is helping with my fatty liver and likely insulin resistance and cholesterol. Have a read up on it.
Hope something from all this might hit home and help for in the future. I'm sure your endo will increase your prescription and that will give you room to increase when you feel need. My endo did that with me, over prescribed to given me room to increase. I'm on 55mcg of Morningside t3 now. I've been on a lot higher dose in the past when things were a mess with perimenopause but I'm post menopause now and best I've been since starting my thyroid journey 11 years ago.
Ah yes I remember those terrible days of struggling to stand, room spinning and was lumped with an erroneous diagnosis of CFS/ME! This justified them to do nothing. At the time that condition was largely seen as a mental illness. The specialist CFS/ME Psychologist I was sent to however said I was a very positive well balanced person with no signs of mental illness. This did not remove the diagnosis or spur doctors on to find out what was wrong with me then...... I was probably classified as an Anomaly.... Another favoured words my doctors like to use which means they don't know!Sorry won't go on anymore..... Just makes me so angry that people get treated so poorly.....
Another reason why I hate such diagnosis as CFS/ME etc. I remember years ago when my symptoms were so bad, life was unbearable and a suggestion to the pain clinic where they have “psychiatrists” was offered, and at that time fibromyalgia was all in rave so I flatly refused and it was put in my notes that I don’t want to end up with such a diagnosis.
My gp referred me for heart tests, due to him listening and noticing a possible issue. I was having bad palpitations at the time whilst on levothyroxine. Including 24hr monitor. After tests I had my appointment with the doctor......After saying hello, HE asked ME why I was there!!!!!
Sorry to hear that. Awful....poor you. I dread to think what's on my notes. Am pretty sure it won't read well....but am beyond caring tbh so long as they leave me and my thyroid meds & B12 jabs alone!! 🙄
Thank you. Sorry to learn about your experiences too. Looking back all my symptoms were consistent for hypothyroidism, and possibly related conditions such as PA (all sorts seems to run in my family) many many years ago. T3 wasn’t tested, but both TSH and T4 were and were within range at that time. So, I’m inclined to think none of the tests are useful for diagnosis and life would have been so different had they gone by my symptoms alone all them years ago.
Since then, I discovered thyroid disease runs in my family, those that have been diagnosed don’t take the treatment and others don’t want to even have the tests. It’s clear as day to me that if they addressed the thyroid disease, all thier health conditions would be significantly easier in the lung run. But, that’s a whole other story probably as a result of health inequalities and stigma towards hormonal difficulties and I seek to have gone off on a rant.
I blame my sofa life as I call it. I am taking solace in the fact that I am begining to feel not so freezing cold. May even save some money on the energy bills! 😆
I was on NP Thyroid for 31 days at the insistence of a new clinician, even though i told her I don't convert T4 properly. In that 31 days, I went from the bottom number of RT3 on the range to just touching the top. Miserable. Gained 15 pounds on a no sugar no everything diet for candida, and almost had to go on disability from work due to weakness, brain fog, difficulty speaking coherently, and depression. I called my previous doctor and was put on sustained release T3, and within a couple of weeks I could feel myself shifting back to normal. It can take weeks or months to clear the RT3, from what I read. My normal T3 dose is high due to thyroid hormone resistance, at 100 mcg daily. I can't even take supplements with thyroid glandular in them because they contain T4.
Honestly, it's a case of, "If you could walk a mile in my shoes". They simply don't know how bad it can get. Before my diagnosis, I was bedridden, sleeping for 20+hrs a day and in horrible pain the brief times I was awake. I honestly thought I was dying of bone cancer or something, I felt so ill. Most Drs nowadays have been taught that, "just take a pill a day and it's all fixed". Nothing could be further than the truth.
Hello DandyButchI know what you mean. My GP is useless. My last TSH results was 3.85 She says I'm adicultly medicated!! l feel terrible. She says I'm in range as it goes up to 4.2 on their scale!! Everywhere l read l shouldn't be above about 2. I take 75/100 levothyroxine alternative days.
I have an endocrinologist appointment my first one next week . I have been waiting since early February. Cancelled twice by hospital one was strike action. Meanwhile l cant work properly so husband is keeping me. I feel useless I'm 62 next month. I am praising you for being able to work at all at 64
We should have our state pension at our age. My pension age is 67 at least yours is 66. I also have a gynecology problem as well making it difficult to be on my feet for long.
I have to work until 67 also. I lost my job too.And yet, the politicians want everyone who are ill to get back to work. Are they aware of the stupidity of that statement.
If you are too ill to work, how can you get back to work?
Hello DandyButchI might have a bit of good news for you. The state pension age is rising again to 67 for people born after april of 1960. If you were born before then your state pension age is 66. Unfortunately l was born after then so mine is 67 missed the boat! I'm so jealous of people a bit older than me with their bus passes and state pension some got theirs at 60 so unfair. When l was younger l thought l would get mine at 60 too. People get ailments in their 60s that's why it's the age of free prescriptions let's pray that doesn't change too as l have a big bags full to collect!
After I read your post, I investigated, and yes, you're right. I get to retire a year earlier than I expected. Good news for once. Thankyou.Only 21 months to go, and counting....
Not much I can add except take note of all the support and advice and you will no doubt improve.
Your GP sounds an arrogant, ill-informed buffoon who should be ignored for his crassness and lack of compassion. Who in their right mind would prefer to suffer like you rather than have a normal sociable life and able to work? Prize eejit!
Many of these deficiencies impact on other body systems and my most positive experience has been treat them all and the results are far more than one could expect, but if just one area below par in treatment then everything suffers. So defo B12 and hypothyroidism needs treatment. Try to see a different GP if you can and take Slowdragons info.
You will get there as you are clearly tenacious and can bite back!!
Thank you, but currently I'm very up and down with all this. I have to try to think positive. Not that that is easy when you are treated badly by medics who should be helping you improve your health. It's like they have ticked their limited boxes, dosed you up on all tablets available to treat all the extra symptoms of underactive thyroid, so you are well, you need to get back to work. You can't possibly still be ill!!!!!!
I have asked to see a different gp at my surgery, but they say no because they each have maximum allocation.
According to a number of doctors, including the late dr Durant-Peatfield, it is possible that the thyroid meds circulate in your blood stream but do not get absorbed at tissue level . He advocated a relaxing lifestyle and treatments including natural dessicated thyroid , NDT, such as Armour, but there are others. A GP in Bristol treats patients using NDT and believes this to be much more effective than Levothyroxine, although we know that a lot of patients feel well on Levo ( and some, apparently don’t tolerate NDT). She developed Hashimoto after contracting Covid, treated herself , and now treats others. Two of my family members are on Armour ( having suffered when taking levothyroxine) and now feel well. They are treated by different consultants . It takes time to get to your required level of NDT. They stated on a quarter of a grain and built up to two grains a day, but some people may end up needing more. Unfortunately, NDT is available mostly ( if not exclusively) on private prescription and costs around £1.50 a grain, around £3 per day ( a price of a cup of coffee in a posh cafe! ) plus a consultation fee. I wish you all the very best.
I don’t really know as I am not a coffee drinker; I drink tea and it used to be a little cheaper than coffee so I estimated coffee price. Obviously got it wrong but it only reinforces my point about the cost .😊
Depending on size, it’s at least around £3.65 ish and more in the posh places. I haven’t had any in a while, and when I do I use my various discounts to bring the price down. Even then it’s stupidly pricy now. What’s worse, some places change more due to cost of living and yet they don’t even have the heating on and makes me wonder what they get are the changing me for! Same with some restaurants. Mind you, it’s been many months I’ve ventured beyond my bed and sofa bar for medical appointments. They world could be a whole different place by now!
If you can, start to rely less on doctors and do your own research and challenge them with your findings! They will pay attention if you quote reputable sources. If not, find another doctor. I found one in my practice and just go to her ( although have to wait), . You should not be left housebound . My hubby and I rarely go to cafes and restaurants because the food is full of additives… I wish you all the very best.
Thank you. It describes me to a T anyway. Only, at time of diagnosis things happened so fast and there has been a lot for me to learn. But, my GPs are used to my driving my health care or as they call it these days “self directed care”. Not that it is always enough to challenge the powerful beast that is the NHS as a whole. The issue is I am having to optimise dose slowly as a full dose based on weight caused chaos. I accept my body needs to rest and slow pace to heal. But, thank you for your encouraging words.
Looking briefly at your bio, you have gone through a lot. It should not take many months to optimise your medication so if can’t see much progress soon, look for alternatives. I mentioned NDT, it does help a lot of people . Relaxed lifestyle is also key; I have timetabled stretching and breathing exercises, reading mindfulness books like ‘ The Power of Now’ , and walks in the park, into my daily (and nightly, if can’t sleep ) routine; it makes a world of difference.
I feel your pain, after seeing a doc on 2nd Aug I requested a US and she said no, after a somewhat lengthy discussion she advised me that SHE went to medical school and I was the patient and not to trust Dr Google. She sent me for more bloods and only requested TSH and T4….
Oh, and I have a US booked for Saturday even though “it’s not medically necessary” she put one through anyway! 🤣
Also, my “emergency” endo appt put through in May is still 8 months away if it’s that soon.
Your doctor may well have gone to medical school, but was obviously not given adequate training in Hypothyroidism and it's symptoms, it's diagnosis and treatment. She is not experiencing it. How can she be so rude.
I know my appointments have been a long time apart also. NHS self imposed problems. I am sure they, NICE, direct finance and tests and treatments to targeted fashionable medical issues, meanwhile cutting costs elsewhere.
GPS are restricted by NICE. They believe what they are told, but do not question the rules which can be biased depending on who provides the " evidence ".
No conspiracy theory here. Ha!
Hang on in there. Knowledge is key to at least challenge any arguments provided by medics.
When I was in hospital for two weeks they stopped my levothyroxine, which I was on at the time. I kept asking the nurses and doctors for it, and was asked, by the doctor, on more than one occasion, why I was on it????? When you deal with doctors that are this idiotic, we need to be assertive, even when we are well under par.
I feel your pain! I don’t think Doctirs really care and they certainly don’t understand thyroid problems……. At the beginning of the year i was really ill, i had a stomach ulcer, my thyroid meds did not absorb into my body as i was throwing up blood, they gave me a blood test increased my thyroid meds and put me on ferrous sulphate, as my iron levels were low, this was in April, Now through my own hard work on getting my health back to optimum i feel loads better! hold on in there, plus it’s not up to your Doctor when or if u go back to work………
Oh I am so, so sorry for you, it is awful being so fatigued and then having to face GPs who treat you as if you are making a fuss about nothing! I'm sorry I hadn't read your post before. It may be of some comfort to know that I was just like you, exactly as you have described, often having to stop and sleep half way through washing up, until finally given T3, right there and then in the hospital where I had my appointment with the endocrinologist, and it worked straight away. (I didn't realise at the time, just noticed that for the first time in many years I had no tummyache - and it has never returned!) The fatigue took a while to ease but the thing is that having been so, so bad, I am sure you will be happy even if not restored to full health. For some of us being able to wash up can be a thrill!!!! How are you now?
Yes, the difference is amazing. However, having sourced information via this forum, and other places, some of which are so clinical, and ignorant, or biased, I discovered that regardless of levothyroxine being the cure-all for hypothyroidism by NHS, it doesn't work for everyone.
However, getting a gp to listen, is impossible. They are the one-size fits all brigade.
I ended up in a really bad place, mentally, because of the Levothyroxine not working for me, but gp kept popping me pills to treat all the symptoms. I was rattling. Plus, I learnt that a lot of the meds he was prescribing, contradicted with the levothyroxine absorption. He didn't know!!!
The government should know about this complete lack of care for hypothyroid patients.
But, once again, it is more common amongst women than men. Does that not highlight the lack of interest by NHS, NICE, and consequently medics. Because it isn't considered important, it is overlooked.
Because women aren't allowed a voice, and when they raise the issue, they are always ignored. Computer says no.
Medics should question the narrative. Just because something is in guidelines, doesn't mean it is right. Do they not question the narrative.
Sorry, having a good moan, again, but it has made me so angry. All I want is to feel well.
The medics just assume, here's a tablet, there there, all better now. If you're not better, they have no idea what to do, and basically just say you need to get back to work. It's all in the mind. I wish!!!
Still, deep breath......
I am, very slowly, improving. I have my endo telephone appointment on Tuesday. My gp
said I need an increase in liothyronine, so I hope she gives me an increase.
Like you, when taking levothyroxine, amongst other things, I had pain constantly in my liver area which vanished within a few days of stopping it. Again, gp didn't have an answer.
I never knew that I could get private testing done without a doctor's permission until I started reading thyroid forums. I won't go into the saga of my thyroid hormones, but optimising my nutrients has been a revelation for me.
My iron and ferritin have been a problem all my life. I found out purely by accident that I could buy iron supplements without a prescription. That was the information I needed to make a huge difference, and I started to buy and test my own iron.
It took me nearly two years to raise my ferritin to mid-range. Then I decided to dose with sufficient iron to maintain my ferritin as close to mid-range as possible. I tested an iron panel regularly. I stayed on a maintenance dose for five years. My serum iron stayed low for years, but out of the blue my serum iron and ferritin started to rise, and I stopped taking the iron supplements. So, including the first two years, I was on iron supplements for a total of seven years. Doctors would usually only give me iron prescriptions for 2 or 3 months, would never re-test, and based on how I felt I think my iron/ferritin dropped like a stone every time I stopped taking the supplements, so it is no surprise that I always felt dreadful.
One very noticeable effect of all this iron was that at some point, almost without me noticing, my anxiety disappeared and my depression was massively reduced.
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Another thing that I've benefited from is discovering that, although my B12 wasn't low, I felt better with a top of range level of B12.
Having supplemented methylcobalamin to top of range or over I have 95% eliminated the eczema I've had since I was a child. I've also 100% eliminated the spots I developed at the start of puberty. These improvements started in my 50s.
I have also made sure I never take folic acid. I need methylfolate to improve and maintain my folate levels.
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Vitamin D - I don't do anything special with this. I dose 4000 iU vitamin D3 most days. I'm happy with a level of 100 nmol/L, although I know some people raise theirs to 125nmol/L or 150 nmol/L. I got no benefit from the higher levels.
I will start the supplements imminently. I did some last year before I nose-dived.
The only problem I have is not having any spare money to pay for private testing. I am on universal credit, having lost my job, and live in private rented accommodation, so have no spare.
However, thank you for your help, and experience. Not a quick fix, is it?
Hello Tabbygirl22 How can doctors not understand how debilitating it is? How can they not realise that the medication is not instantaneous in making people well? And, sometimes other people don't understand either.
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NHS 'guidelines' preventing my GP prescribing for hypothyroidism - help please!
Is it a breach of my patient rights when a GP does a thyroid blood test without telling me?
Successfully negotiated Levo increase but GP has scared me 😱
Ideas, help and advice for approach with GP please
Teacher: Hypothyroidism & CFS/ME
