I am so upset by the treatment framework that is passed down to primary care practitioners. Hashimoto's isn't diagnosed without testing thyroid peroxidase antibodies. This is refused on the basis that only TSH needs to be checked. I suffered several years before I was lucky enough to get the test (worked with an ENT/Thyroid Surgeon who tested for it after years in antidepressants from GP). Now my daughter has just had the test after suffering the same as I did and being given antidepressants, the same as I was. I finally went with her to see GP re her low iron, high cholesterol etc. She told daughter all physical symptoms including fatigue and anxiety were caused by her mental state. That is when I stepped in, telling her we had a strong family history of autoimmune conditions, I asked if she would request TPOa test. She was very reluctant and only wanted to test TSH again. I pushed for it in light of my own experience, my other daughter with coeliac disease, and more conditions in the family. The test was done and extremely raised, diagnosing Hashimotos.
Why is the NHS letting patients (mostly women) down so that more damage and suffering continues? Why is it so difficult to get the full range of thyroid tests done? Why not listen to symptoms instead of sticking to the NHS gold standard of TSH? After diagnosis symptoms are ignored as long as TSH is in range. No chance of full thyroid panel which would show whether T4 is being converted to the active T4? The list goes on. I will stop now. 😡
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And with all that going on bow I worry the government might take away my PIP when review times come along. Pip has made it possible for me to run all my blood tests, see a private cardiologist before the 9 month nhs waiting list, and see a private endocrinologist after the nhs rejected my referral three times.
It is indeed unfortunate. My GP suggested to decrease my dosage which I'm feeling good on right now to the previous lower dosage where I explained about my symptoms of fatigue, anxiety etc. He kind of insinuated that it could be due to mental health issues as I had previously sought help in this area.
Not sure why it didn't occur to him that the anxiety could be due to being undermedicated?
I'm so glad we have the supportive forum with the knowledge and experience that guides us to advocate for ourselves at the doctor's.❤️
The next time the GP requests to lower your dosage and thinks that all is in your head, you could show him this publication that clearly links thyroid disease with neurological issues such as anxiety and depression:
From a scientific standpoint, the monoamine hypothesis, which connects mental illnesses to the action of monoamine neurotransmitters, is the most compelling explanation. In relation to thyroid hormones, triiodothyronine (T3) is known to control the levels and activities of serotonin and noradrenaline. Depression and anxiety disorders can be brought on by low T3, and these illnesses are also associated with low serotonin and noradrenaline levels. According to a meta-analysis, 25% of cases with resistant depression were successfully treated when T3 was added to tricyclic antidepressants. Serotonin and noradrenaline levels rise as a result of T3's effects.
Hi trying to upload these documents and having difficulty - can't seem to get the link to turn blue which means you will be able to open it - any ideas.
The problem is that most GPs are clueless about the thyroid, it's too complicated but some GPs I've interracted with, have the courage to admit it. If possible, scout around until you find a sympathetic ear but I admit, it's getting more and more difficult to do this.
I actually have to tell my GP what to do as he has no clue. My Hashimoto's Thyroiditis is very complicated and TSH often reaches over 125. I am one of only a few in County Durham that takes T3 and T4 medication and has never had it taken away from me. T4 alone makes me very poorly. Too much liothyronine and I have heart spasms and have to be rushed to A&E. I'm such an expert on my own condition the doctor hates it, however he does any blood work I want and I set my levels for Liothyronine and Levothyroxine and he just agrees. If I listened to him I'd be dead. Currently taking 40mg of Liothyronine and 200mg of Levothyroxine per day.
My tsh fluctuates the highest recorded for tsh was 85 , my recent one was 34 , has the liothyronine helped you take control of the tsh ? As I am currently just on 150mcg levo.
Andrew taking Liothyronine changed my life. I went into a myxedema coma due to my TSH being 150 back in 2014. I actually thought I was going to die. Within days Liothyronine changed my life. My carpal tunnel went away, my puffy face went down, I didnt feel sluggish, my mood lifted, my brain fog went, I felt 25 again. My condition is complex so my TSH is never right. It did initially bring it down from 150 to about 49. It's now 36 I think and thats the best it's been for about 8 years but I'm slowly increasing levothyroxine in combination and I feel bloody fantastic, the best I've felt in a long time so I have a feeling when I next get my bloods my TSH might be around 20 or below. If you've been taking levothyroxine for a long time and you TSH isnt getting better then speak about combination therapy. I had a very good Endo because of my myxedema coma and they put my on T3 but a lot won't because of the cost but it really did make a massive difference for me. You know your own body, if you dont feel right, fight and demand they take action.
Thanks for replying mate , I will discuss this with my doctor or consider going private , I've just found out my testosterone is very low aswell and I'm sure I saw a post saying testosterone and thyroid issues can be connected
Sorry for my spelling of it lol. Mine is high mate and it's because of my thyroid. Don't let them put you on statins. You need your thyroid sorted first.
The low testosterone will likely be to do with the thyroid, but just thought I'd let you know that my uncle had a complete personality change, became lethargic, demotivated, exhausted, depressed, all sorts, and it nearly broke his marriage up. Just in time, his GP thought to test testosterone levels and they were pretty much zero. Once on replacement testosterone my uncle became his old self again, almost immediately, and his marriage is going strong 20 years later.
"...testosterone and thyroid issues can be connected."
That was my experience. Here's an image showing my lab values of Free Testosterone. There was a time when a diagnosis of hypothyroidism was made when someone had high cholesterol. Now, if a patient is receiving levothyroxine for hypothyroidism and their cholesterol is still above normal, I would suggest that means that the dose is insufficient or that T4 - T3 conversion is inadequate. You don't have a statin deficiency so they won't help you.
Lab values of Free Testosterone as related to thyroid dose of T4 / T3 combo therapy
Thanks for that mate, might sound daft but when I see something visually I seem to learn more from it than just words alone , so seeing the graph and understanding it more has left me flabbergasted that a link is clearly associated between the two
Have you got the results for total testosterone as that's the one I have just had done although I will be asking the doctor tomorrow for a full testosterone panel
it seems whatever is wrong with you these days, the doctor will blame mental health. Absolutely disgusting what is happening to people and it can only get worse sadly.
Same old story for me sadly .The one they always write down for me is anxiety! I mean yeah like getting diagnosed with a neurological condition and hashimoto's isn't gonna cause any anxiety.
For me it's the being so very ill and having to fight to be heard or believed that takes it's toll.
I completely agree, thats why other autoimmune diseases like Polysystic ovaries is ignored. a serious autoimmune fertility condition affecting 10% of women....and yet AIDS a new disease in the 80s affecting mainly men, is cured within a couple of decades..grrr.
".and yet AIDS a new disease in the 80s affecting mainly men, is cured within a couple of decades..grrr."
It isn't actually cured, but yes, there are medications that put people in remission. In the West. In developing countries it played out very different and still does. It is the women and children that suffer the most due to men having unprotected sex then going back to their wives and the wives are not able to avoid sex with their husbands nor use condoms so become HIV themselves, and their children are born with it. There are many elderly females caring for their dying daughters and grandchildren on their own.
Again, it was the women who were affected the most.
And now the mainly male politicians and Musk have condemned those women again by withdrawing funding for overseas aid without actually understanding what it was being used for.
You and your daughter have my sympathy and understanding. I went to doctor with severe alopecia areata, fatigue, aches snd pains, low mood, brain fog etc. asking for thyroid test. TSH was 9, told to come back for retest and as TSH was around 5, wasn’t offered treatment. Spent all the several thousands I’d inherited on alternative treatments to no avail except most hair grew back. After many years of illness moved - new surgery. Patches of hairloss again, so asked for thyroid test. TSH 14, low T4 - given treatment T4 and tested for antibodies (positive, over 1000 so Hashimoto’s).
It is deeply upsetting, annoying and harmful when symptoms are dismissed. Many, many years (decades) of life adversely impacted by this attitude in so many clinicians.
(Turns out that alopecia areata may also be linked to coeliac disease, which I had to diagnose myself with costly testing (after advice of naturopathic practitioner to try gluten free diet for a month). . Many symptoms improved on gluten free diet. Cannot tolerate trace amounts of gluten now. After a few years one new consultant let me have the genetic test which confirmed coeliac gene, so finally believed by medics.)
Goodness that's terrible. I can relate in that I had to spend all the reserve of money I had going private. Have no savings anymore. Same thing not being believed and decades of ill health. Honestly it's appalling. My hair is thin, white and patchy, and never grew back to its former thickness. Completely dismissed by GPs. I was dismissed again yesterday for immunomodulatory treatment by a female consultant no less, after previously being greenlighted for it. Have spent all night in pain and a few tears and have no recourse left in the NHS.
Oh I am so so sorry for everyone - I went through the same thing 25 years ago and still ongoing - hit the menopause (there is a link there) and spent a fortune - funnily enough it was the women consultant's who were and still are being obstructive - I had to go to Belgium in the end to get thyroid hormone !
Yes, I find female GPs and consultants are no better overall at taking an interest in health topics to relating to women than men are, and they can be just as obstructive, it's a mystery why. Imagine having to go to travel abroad to get better treatment. It's shocking.
That was 19 years ago I went to Belgium - but I had no choice I had over 100 symptoms as listed on the Thyroid UK site - skin turning yellow - eyes yellow - falling over - no muscle strength - spasticity- muscles going into spasm so I couldn't move until the spasm went was stuck in the middle of the High Street once with my bottom sticking up in the air as I had tried to go up a kerb and got stuck ! Slurring of words - memory gone - eyesight fading - skin covered in sores as the liver could not metabolise nickel (in strawberries for example) from food I was eating (and I didn't drink) - my skin burning through the windscreen of a car so I had to get my car windows blacked out to the maximum contacting the DVLA to get permission on medical grounds - I had to wear clothing covering ALL my skin or I burned like a blow torch - this was due to beta carotene not being metabolised due to liver being compromised due to so little thyroid hormone - how I got through this I do not know - chest infection after chest infection - antibiotics - allergies to - so was running out of what I could use - I heard my consultant say to someone - I don't know what we are going to do as we are running out of antibiotics to give her - that's why I went to Belgium - I was dying -and first thing he said was you need thyroid hormone - I had also gone from 8.5 stones could eat what I wanted all my life never put on a pound to 16 stones rapidly ! Been to hell and back and still nothing has changed for us all has it and that makes me so angry.
had to wear clothing covering ALL my skin or I burned like a blow torch - this was due to beta carotene not being metabolised due to liver being compromised due to so little thyroid hormone
You were almost certainly very short of real vitamin A. In healthy people beta-carotene is a provitamin that converts into vitamin A (retinol) in the body. Some vitamin A supplements that are sold actually contain beta carotene rather than real vitamin A. But people who have thyroid problems can't do the necessary conversion very well, and end up very low in retinol as a result.
As far as I know beta carotene is not particularly dangerous but high levels of real vitamin A (hypervitaminosis A) are, so whereas beta carotene doesn't need to be tested if it gets supplemented, vitamin A ought to be to be safe - but such testing is very expensive.
According to the wikipedia link on beta carotene :
When plasma retinol is in the normal range the gene expression for SCARB1 and BCO1 are suppressed, creating a feedback loop that suppresses β-carotene absorption and conversion.
Thanks for explaining this humanbean. I had no idea about that. I have natural tan coloured skin but don't tolerate the sun well and have been burned in the past, I don't sunbathe ever. I have always been perplexed as to how some people can sleep stretched out in the sun and others struggle. I'm sure there's many factors, but in the context of low thyroid I had no idea there was a possible explanation.
what a terrible time you had, I really cannot think how you got through that I am in the doldrums right now with ongoing symptoms and a long history of working to improve my health, energy, and great cost and I feel so guilty at time. I wish you well
Alanna012 included - thank you for your kind support - having had so many 'people' tell me nothing to do with your thyroid it always helps to have someone acknowledge our journey.
The problem was and is with my case - I was a pure case of total breakdown of the human body due to thyroid disruption and I don't think anyone had ever seen such a case - as probably most are given drugs to suppress symptoms - although in a document dated 1850's my symptoms were listed - I was unable to take any drugs (I wouldn't have taken any anyway) I was showing such multiple symptoms as my body struggled to stay alive. I worked out that my body was so strong in trying to help me and that the human body 'steals' vitamin and minerals from other parts of the body to keep the thyroid going - such as C - zinc - magnesium - B vitamins etc. etc. - and many of the symptoms I was suffering from were as a direct result of serious deficiencies causing text book symptoms - which luckily enough I recognised.
I forgot to mention my jaw dislocated - agony - my clavicle bones came apart and piggy backed on to each other - and my pelvis had shunted forward which was causing the agony of movement (in moving forward at work to answer a telephone I would scream in agony) - my connective tissue was breaking down as identified by an osteopath - who told me something was wrong and wrote to my GP who ignored it ! Mucopolysaccharides had infiltrated my body so that every organ was struggling to work properly - in absolute agony with my back and all joints I had to keep working - so many people helped me osteopath's - Alexander technique to train me how to get out of a chair without screaming which was very alarming to my work colleagues - private physio's - Rieki - cranial osteopathy - sports massage - reflexology and even homeopathy - thyroid blood tests were showing I was at the bottom of the range but not showing a high enough TSH level - so denied it - even privately - I was so lucky I had private medical insurance whilst working - but I had to give up work as I grew to such a size and couldn't get into any of my clothes any longer and was unable to walk far without gasping for breath and was getting chest infections just from the aircon. My immune system was fighting against my thyroid to the tune of over 7000 antibodies. I was so ill - but I KNEW it was the thyroid and gave my renal consultant a book called Solved the Riddle of Illness and he was convinced as well - when I finally got on thyroid hormone and he saw the blood supply to the kidneys had improved my levels he was - shall we say - annoyed that I had been denied this vital hormone I was so deficient in.
I would suggest everyone reads Solved the Riddle of Illness by Stephen Langer - once I knew it was the thyroid - having studied nutrition and believing that illness is 'dis-ease of the body that we need to help re-balance - I worked on the deficiencies causing the symptoms I was suffering from but still being denied the main item I needed thyroid hormone - I remember so looking forward to seeing a dermo about the sores all over my body - and she said "nothing to do with your thyroid " I ran out of her room sobbing as I so knew in my case it WAS and when I took my first 25 mg of T4 and felt the pain in my joints melt away within minutes and watched the circulation speed up and disperse the sores to virtually nothing - I thought of her. I went to see an endo the other day and said my eyelashes have fallen out again and she jumped in immediately and said - "nothing to do with your thyroid" - I just smiled at her "
In closing I remember seeing a consultant who said to me 'Oh you are what we call a big file' - I said nicely excuse me but I have had to live that - he looked at me and said - of course - I apologise !
Keep fighting your corner all as I still do for us all - in the hope that one day someone will twig what is causing so many many symptoms of disease or should I say deficiency diseases today ! Best kept secret in medicine today in my opinion !
I'm so sorry to hear about your suffering, Alanna012. In the end, it seems we have to diagnose ourselves with expensive testing (not easy when we have no savings left). I hope you find a way to better health. Sending love and hope x
Completely agree, on all counts. As soon as I hit the menopause, all GPs focused on was mental health - not the underlying cause. Then the same with my thyroid issues. If you try to educate yourself on the topic, they get annoyed and dismissive.
Yet if you have high blood pressure, high cholesterol and are approaching pre-diabetes instead of thinking something else could be causing it, they blame you for your lifestyle and throw statins at you without a face to face appointment? Yes some people may make a difference by changing lifestyle but mine was fine!
There are so many more female doctors now, perhaps they haven’t hit an age where thyroid conditions become more prevalent so they actually realise the impact (menopause now seems far better understood).
Absolutely re statins and these aren't good with the higher risk of the side effects of fibromyalgia with Hashimoto's. I believe the GP practice will have labelled me as uncooperative as I refused them!
I went back to my GP and asked for a blood test this week because my symptoms are worsening. I got told “You should only need a blood test every 12 months”. I last had thyroid bloods tested in early November, so 5 months ago. I have Hashimotos. Apparently the 50mg levo they gave me will be fine (despite representing a massive under dose compared to my weight and height). You see my autoimmune system should understand that it is only possible for it to have a flare up according to the NHS’ pre-determined schedule for when I’m next owed a blood test. Symptoms are routinely treated as though the patient is imagining them. I got my blood test, because I was insistent, again.
After psyching myself up to do battle to get a simple blood test, turns out I can’t get an appointment for a blood draw until May, but that’s a different problem!
Thats disgusting! Have you demanded to see an endo? Refuse to leave and demand a referral. If you dont feel right and poorly, remain firm. Ask the GP what experience they have in endo, you will likely find zero. Mine had to google what Liothyronine is. I had to threaten my GP with GMC and everything, now they know I will kick off if they dont listen, so they just do what I want. I refuse to feel poorly anymore and have someone who doesnt understand my conidition tell me what to do.
This is why I do medichecks tests. Once you hit something in range you must be stable so yearly tests. My private tests have definitely shown I haven't hit a stable dose yet.
Doctors always blame my mental health for almost everything I go and see them about. I am getting on a bit now. I was prescribed my first anti-depressant (valium) in the 1970s. Luckily I slept so much with them that I couldn't live a life, so I stopped taking them very quickly and didn't get addicted to them.
Personally, I'm horrified by how often doctors have chucked addictive medicines at me as if it is a normal thing to do. I don't have an anti-depressant deficiency!
I eventually treated my own depression and anxiety by optimising my iron, optimising my B12 and folate with methylated supplements, and treated my thyroid to get it to optimal.
I didn't realise that optimising my nutrients would have a positive effect on my mood until it actually happened. A doctor has never said to me "Oh, you're depressed, let's test your nutrients and improve any that are a bit low." Can you imagine? I would have to live in a fairy tale for that to happen, not the real world.
You are so right - we have children that are suffering and so deficient that they are now becoming violent - prisoners out of control - yet no-one has thought I wonder if their brain is crying out for nutrients.
Quote Research has shown that hunger can lead to behavioural, emotional and academic problems in children. Being hungry can reduce a young child’s tolerance to frustration and make them more prone to tantrums and behavioural issues. Nutrition can play an important role in behaviour, learning and mood. The Food and Behaviour Research (FAB) website offers information on a wide range of conditions such as ADHD, autism, dyspraxia, anxiety, depression and many other physical and mental issues. Unquote
Very sad that so many people are left with such deficiencies that cause them so much pain and take away their quality of life.
Wasn't there an experiment some years ago involving giving children supplements of omega 3, and seeing great improvements? I think perhaps it was Patrick Holford who was behind it.
Could be Patrick (Institute of Optimum Nutrition- was a member at one time ) but FAB have done wonderful work and on young offenders but does anyone equate bad behaviour with brain issues due to diet - no - and it breaks my heart - if the pregnant mother or indeed father have inadequate nutrition then these deficiencies are even passed down to the foetus/child so they start off badly !
fairy tale showing small glimmer of light HB ........... my daughter recently saw GP ,
GP (all by herself , no prompting) decided to look at cortisol and B12 , folate, ferritin ... this despite fact daughter has previous antidepressant / MH history on GP record .
Your observations are correct, women in western medicine are treated differently than men. This has historical reasons, and now the misogyny is hard backed into medical education.
When medicine started working on the basis of evidence, and they started doing randomised controlled trials, they routinely excluded women because of our monthly fluctuations in hormones.
But it isn't just with drugs. Medical schools have always taught that women are wimps and complain about pain when they aren't in much pain. So if a man comes into the ED complaining about pain, the clinicians, male and female, will assume that there is something wrong and give them painkillers. If a woman comes into the ED in pain, they will assume that there isn't much wrong and not give them painkillers. Yes, it is the same for both male and female clinicians. (I am study knowledge representations of pain for my PhD so I have citations for this).
Interestingly, if the cause of the pain is know, female physicians treat the women a little better than the men do. But if the cause of the pain is unknown, both male and female physicians downgrade the pain a woman is feeling.
This is not because they are evil people wanting women to not be treated, it is because of how they have been taught to see women throughout medical school.
There are two books that are well worth a read, one on medicine is Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, by Maya Dusenbery and Invisible Women: Exposing Data Bias in a World Designed for Men By Caroline Criado Perez.
Invisible Women covered more than just health. It has some real stinkers in it. Like when architects designed a housing estate that didn't have any kitchens in them. Being men that didn't cook, they didn't think about the need for kitchens!
So yes, because 80% of those with autoimmune conditions are women, there has been a lack of research into both causes and treatments. This then reflects on medical practice, and in turn on patients, both male and female. It isn't a personal problem with individual people, it is a system problem. And systems are much harder to change than individual people.
women in western medicine are treated differently than men.
I have a little anecdote about this, from several years ago.
I went to see my GP, I can't remember why. I was told I needed blood tests and was given a form to give to whoever was going to take the blood. I needed an appointment to get the blood taken. I asked for an appointment for first thing in the morning.
Receptionist : What tests are you getting done?
Me : Handed over the form.
Rec : Thyroid tests don't need a morning appointment you can only get them done in the afternoon.
Me : Pointed out that time of day matters when testing thyroid.
Rec : Repeats that testing cannot be done in the morning it must be in the afternoon. And is clearly getting annoyed with me for commenting.
So I end up with an appointment in the afternoon.
About a week later my husband goes to the doctor and is also given a form for blood tests. I'm waiting for him in the waiting room because we are going somewhere after his appointment. Husband goes up to reception and says he needs an appointment to get blood taken for testing.
Receptionist : Yes, Sir, would Monday at 8.30 be okay?
Hi Trisha I have always said if I win a lot of money on the lottery I will take the whole field of endo to court to stop this - in my opinion they are holding back the health of the nation whether that be women or men ! I got ill in 1991 - I had 100 of the serious symptoms listed on the Thyroid UK website - my eyes went yellow - my skin was tinged with yellow - (gall bladder/liver involvement) I was covered in sores all over my body ( low zinc due to seriously low thyroid hormone grabbing the zinc to keep me alive) my words were slurring - I put on double my body weight rapidly 8.5 stones to 16 stones in a couple of months - was told I was overeating - my beautiful hair fell out - I kept falling over as my muscles were not working properly to lift my feet up- I was in such pain with my joints I had to be helped turning over in bed screaming as I did so (all went when on thyroid hormone) I could go on and on and because my blood test did not show that I was low on thyroid hormone even though I was at the complete bottom of the range - I had thyroid antibodies at 7500 - at that time Drs were getting struck off if they did give thyroid hormone on symptoms so I knew it wasn't their fault but this still continues not looking at the symptoms and going by the TSH which is now unforgivable. Things should have moved on. Eventually after much damage to my body and after 15 years I went to Europe to get the hormone I so desperately needed but I am still not right. I am horrified that after much fighting for our corner we are still no further forward. Have you seen this - the Professor who was on the team to set the TSH test sets out how he was wrong but no-one will listen to him to get things changed !
I have seen this before. However it was extremely interesting watching it again, with everything I have since learned and experienced. Thanks for posting. An honest man. Something absent from many of our present so called eminent, endocrinologists.
Hi - yes I knew it had done the rounds but thought it might get to some who hadn't seen it - poor man I feel sorry for him even though he was part and parcel for me nearly losing my life over the blood test debacle - but everyone makes mistakes and he has tried desperately to alert people but of course the narrative now adopted suits all as it saves money I daresay. I was astounded to hear him say that in the days before the blood test patients were given - on symptoms !!!! - 200 mcg which automatically converted enough T3 - I have no thyroid and I am only on 120 mcg and 10 of T3 ! Says it all really.
I was struck by that and I can’t remember when he did that talk. I can understand his/their thinking on that. However of course new research finds that excess T4 indeed leads to all the very heart stuff (that’s what I keep tabs on having heart issues) they thought they were avoiding. I am no worse/better heart wise for dropping my T4. However so much heart damage done I have had to resort to surgery.
I was just saying to someone else there, out of the six people on my ward 50% was a constant number (female) one in one out, all taking thyroxine. How come this is happening and no-one is taking notice?
After all the time I spend attempting to highlight the heart and hypothyroidism connection and getting nowhere, my heart surgeons just acknowledged it as a fact. They at least are aware of the connection but nobody else in our medical system seem to be aware. When it’s costing the NHS literally millions and they just can’t recognise it, diagnose it, treat it properly etc etc ………?
Hi I don't believe that T4 can cause heart issues as they tend to state parrot fashion - the opposite is actually true - my Mother had an enlarged heart for years and when finally on T4 her heart went back to normal - after all the heart is a muscle - and low thyroid hormone affects the muscles - also whilst being examined by a consultant I see - he was checking my breathing (i.e. with stethoscope) and asked me if I had any thyroid hormone with me (he was not an endo by the way !) I said yes - why ? - he said your heart is drubbing - can you take it now please ! I had not taken my full dose that morning so it didn't affect my blood tests. Obviously the use of thyroid hormone to excess will cause the heart to be put under pressure but if I remember rightly there was a situation that caused this to be set down in stone - but can't remember the whole scenario at the moment. Bit like - fat is bad for you and then it becomes set down permanently - when in fact that was untrue and it suited the food industry at the time to say that.
I should have said so-called excessive T4 “can” lead to heart issues. Of course everyone is individual. In my case T4 (no matter how much or how little) was making no ‘further’ improvements. And T3 I just could not get a handle on at all. As I understand, this is where the particular ‘imperfections’ of the deiodinases, and their combinations can make the difference between T4 being helpful or not. So many people do well on T4 and I envy that. T4 for me at the absolute best was like an aeroplane doing a holding pattern. Perhaps limiting some of the damage but ultimately the journey had to be given up. I won’t say T4 has not done any good (and my heart issues were established long before any thyroid hormone was made available) but it does not do nearly enough for me.
It sounds like you got that ‘magic bullet’ with T4, which we also hear about pretty often about T3. Either ‘bullet’ would suit me thank you very much but I think in the end it will be a combination.
Hi - actually I feel the same as you - I take T4 and T3 but I have always said - it doesn't seem to be getting through to really boot out my symptoms - I think I have the 'deiodinases' issue - may I ask if you know what this lack actually causes for the thyroid gland - would be grateful for any information - I will be tested shortly to see if I do have the deficiency but I am sure I do !
All conversion does not happen in the thyroid gland itself.
From what I can make out and the ongoing research has uncovered, is that different combinations of at least three genetic pathways already discovered ( helvella would be much better explaining) have a big impact on how both natural and exogenous thyroid hormones are utilised. I don’t know the precise difference those can make, other than people (80%) who do not appear to have the genetic problems and presumably convert efficiently, seem to do well on Levo alone. Those with the genetic ‘iffy’ influences do not. The Canadian Thyroid Patients website does make a really good explanation. I get the ‘jist’ as they say but the detail is beyond me. E.g. One path is about interference with ‘normal’ conversion happening outside the thyroid gland. The thyroid gland itself converts for distinct parts of the body. This particular genetic defect could be very bad for the heart, as apparently the heart relies totally on circulating T3 in the bloodstream and if this type of conversion is poor and the hearts needs are great, you are going to have issues. Those who can convert T3 outside the thyroid gland do not experience this problem.
However it’s possible to have more than one of these genetic defects; clearly adding to your problems.
It’s a hell of a can of worms that is clearly conveniently overlooked and avoided by our endocrinologists.
I have never bothered with getting the genetic stuff checked (basically because in my neck of the woods it’s ignored as an issue).
Genes have their impact - but the whole picture is made even more obscure because two people with the same genes might end up with different conversion capabilities.
The effects of genes depend on those genes being translated into proteins. And that translation is affected by numerous factors.
For example, stress, diet, and other disease processes (e.g. infections).
The whole arena is too complex. We can sometimes see that a particular gene variant, or combination of variants, often results in a greater level of particular problems. But beyond those issues which can be tracked to a single gene variant, we've barely scratched the surface of combinations.
Just to say I had very high TgAb (c.800) when ill about 20+ years ago, never had raised TPO, yet you can only ever get TgAb tested privately. An endo.recently said this stat.represents only 5% of Hashimoto’s…so even if reluctant NHS has tested TPO negatively, you might still have it!
NHS GP refuses to acknowledge my private results and high Tgab, crossed out the word autoimmune when I used it in details for an appointment, shouted at me and said it wasn’t autoimmune as my tpo ab normal. Hopeless.
Stupid GP! Hope you saw the later post about Chinese research on TPO and TgAb hypothyroidism, referred to as Hashimoto’s, and at least some indication of how they were different re.metabolic ‘stuff’( unfortunately went abit over my Long Covid brain fog head)!
Yes, I’ll need to read that one during my good hours of the day/ week if they happen. I did get sent a paper a few years ago when first diagnosed about tgab and symptoms, and I do seem to get bad symptoms. I’ve done so many searches but It never gets so many mentions as TPOab.
I'm really sorry to hear about your struggles especially when it involves children. The NHS is unbelievably bad with Hashimoto diagnosis. My antibodies are always 920 and higher and they say it's slightly elevated..🤦🏻♀️🤦🏻♀️🤦🏻♀️ it's went to private Endocrinologist and even after his letter saying Hashimoto condition NHS still call it uncomplicated hypothyroidism. I'm female age 35 on 150mcg Levothyroxine since 2020.There is massive difference in how thr levels fluctuate between two conditions and what approach they should be taking. I'm very sad about how we all been treated and I agree that there are gender bias within healthcare sector. I also would highly recommend Professor (name removed by admin) who greatly helped me with treatment plan and changed how I'm feeling. I did see him privately and don't regret a penny spent as he's very knowledgeable and somewhat passionate about getting the right treatment for his patients. He works online and use different hospitals for blood works. Something that I found out recent with other private treatments is that prices vary between hospitals so worth to call up and ask for prices before booking. There is a lot of good information and specialist advise available for free on British Thyroid Foundation page. I believe you have to be a member wich is one of annual fee of £16 might increase soon.I truly wish you all the best in your and your kids journey!
I'm male and I totally agree with you! And it's not just thyroid disease, the discrimination extends throughout medicine, period. After all, who does the research and who pays for it?
These medical records keep coming back like a bad meal. I was suffering from anxiety following a heart attack and reacting adversely to every symptom. Result? I'm hypochondriac, the diagnosis followed me around for years.
I had the same happen to me - a nasty comment followed me for a long while - so now I say please do put any derogatory comment on my records that will stop me getting treatment !
I went to an appointment for an ultrasound on my reproductive parts and down on the records it said i had had hysterectomy, that was news to me lol. Puzzled is not the word.
I think it's due to a confluence of processes. 1) reliance on computers and not only reliance but using them as a substitute for human interaction with patients (people); 2) dehumanising health through privatisation/commercialisation; 3) reduced spending on health that stretches resources to breaking point, it's at the point of contact, the GP surgery where it all breaks down eg, telephone 'consultation' instead of face-to-face. 'Small things' like keeping accurate track of patients is one of the first things to fall apart, it's not deemed important enough.
Simple Answer! The NHS is funding driven!! I've worked in the NHS for years. Tests cost money as well as treatment.
The most recent protocols to guide all departments is "Where possible,and if it can be avoided at all, DO NOT test. Testing means there is a responsibility to treat under the Hippocratic Oath." Treatment costs money, billions. I've had a GP (old school) admitting this when we discuss modern NHS care, especially thyroid health. It's disgusting, I'm glad I don't work in the NHS anymore, I can't live with that lie. That is why so many health professionals are seeking work abroad these days. Unfortunately there's no real turning back, the NHS is extremely broken. 😢
Totally agree - has always been the same up to a point - but now it will get worse - there is no preventative medicine in this country unfortunately ! I thought I read that the Hippocratic Oath had been dropped - seem to remember reading that somewhere. Thereby they are off the hook !
He probably learned’ that from my case - as I used to show him my extensive blood tests that Belgium used to do - pages of vitamins mins and other hormones not tested in NH S or private - I was seriously deficient I virtually had malnutrition but nothing NHS could do as 1990’s and they just didn’t do anything like that - my Lupus consultant used to be in awe of the tests I was getting done and often showed his colleagues- so pleased things are finally getting there - they took their time !
I absolutely agree with you. The medical profession in the UK is dominated by ignorant, arrogant men from well off backgrounds who continue to wrongly diagnose women who have physiological issues with mental health conditions. It's downright misogyny. The same has happened to menopausal women. I was diagnosed with CFS 25 years and was sent to a psychiatrist! The treatment of pw CFS is a scandal. I have been looking after myself medically ever since. I also had severe hypothyroid symptoms (it's in my family) and was lucky enough to see Dr Peatfield who helped with that.I worked in the Department of Health on their Aids campaign back in the 80's. The reason the Government and the NHS responded (eventually) was due to extensive campaigns by a strong and united Gay (as it was known then) community. (I was also well and politically active and helped Jimmy Somerville chain himself to the DH building in Whitehall 😊)
We will never get change unless we campaign for it. Unfortunately many of us are too ill and tired. We need a Davina MCall moment with a public figure raising the issue. It's a scandal that so many of us have to pay to even function.
The NHS is barely functioning (husband is at radiotherapist and it's dire) thanks to Tory (spit) cuts and Starmer (spit) isn't helping helping. Getting anything done outside of routine is very difficult.
I actually went down this route (legal) went to see a Barrister in Lincoln's Inn field telling him my story and how I would like to start a group case - he said it would have to be me as a separate case which would set a precedence and change things but then warned me - would you be ready for what would happen - you are ill - your records will be pulled which would alert medical teams to what you were doing (in the late 90's it wasn't normal as now to ask for your records - it meant legal issues) and I may be unable to get medical help - that frightened me but was happening in those days - also he said you are very ill and this will take years - can you be under that stress for perhaps years - he said I had a case but didn't think I could go forward because of these issues - shame - I had always hoped someone famous who experienced the same problems and with some clout would so the same but it has never happened - yet .......................we live in hope !
Last night's episode of Casualty showed how misogynistic and money focused the NHS, or some people within it, can be.
A (male) surgeon would not believe the diagnosis of a (female) nurse and had to ask one of his (male) colleagues to examine and make a diagnosis. The nurse was correct.
This same (male) surgeon, who appeared to be on the board of the hospital, refused a request for a certain drug that would help an end-of-life Alzheimer's patient hang on for a little longer so his wife could be with him and he wouldn't have to die alone with no-one to hold his hand and tell him they loved him. 😡
I know this is purely a fictional show but the ideas must have come from somewhere...........
NHS are the cause of my poor health, lack of eyebrows not a single hair poor joints weight gain which wont go no matter what and when it came up on my results high anti bodies next to this in brackets no need to inform the patient. i started with an over active thyroid over 30 years ago and am now under active with hashimotos .
they have failed me on every single level. i wont bore you with all the suffering i have had at their hands.
i have recently been left some money and am now looking for private health care in Birmingham so hopefully i cam get proper treatment and get my life back.
Well done Trisha7 for standing up for yourself and your daughter. Sadly nought changes until it happens to them or a member of their own family I suspect.
Now and again there are one or two stories on here of support and belief coming from a consultant seen. Whatever happen to "do no harm" a lot of consultants seem to forget this.
It got worse. Antibodies over 1000. She saw GP who want to recheck TSH!!!! No treatment cos he said it may be graves disease or go overactive none of it made sense. Back next week to a different GP aaarrrgghh!!
It is so so depressing for all of us ! I was fobbed off for ages before I got an antibody test and that was BEFORE the current crisis in the NHS. My GP can request T4 but THE LAB will decide based on TSH whether to give a T4 result .
It pushes us all towards private testing .... my experience with endo was equally obstructive and inadequate They do not understand autoimmune conditions .
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