Just venting about annoying people: I have been... - Thyroid UK

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Just venting about annoying people

salsapixie profile image
59 Replies

I have been hypothyroid for about 5 years and I take levothyroxine 75 micrograms daily. I'm also an NHS nurse so a lot of my beliefs about treatment are based on good quality research. I do believe supplements and general good diet are helpful too. What I'm getting really annoyed with are people making sweeping claims about certain diets etc. I had an argument with a colleague who believes in alkalising diets and lots of other stuff. She insisted on telling me about how she had "cured" her "hypothyroidism" with some type of diet. She had diagnosed this herself and not received a formal diagnosis at all. I found this quite hurtful, like I was almost being blamed for having my chronic condition. I also ended up in an argument with a local juice seller, who kept posting (highly unproven) information about treating cancer and chronic illness with very restrictive diets. I had to disagree and he made the claim that almost all chronic illness is lifestyle related. Again, implying it was all my fault. I'm not disputing diet and lifestyle can help chronic illness but I hate these people who use poor quality evidence to claim you can cure your illness. That somehow you're a bad person for taking mess despite it being based on good quality research. Yes supplements, healthy diets and exercise can all help but I most certainly didn't bring on this illness myself! Grrrr! Rant over

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salsapixie
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59 Replies
Ruthi profile image
Ruthi

I do sympathise! Its like my college tutor telling me to cheer up and get out in the fresh air when I was deeply depressed (and ended up hospitalised a few weeks later). Right, so if it were that easy do you imagine that I wouldn't have tried it, you insensitive moron? The other thing that many hypothyroid patients suffer is the (often unsaid) belief that their weight gain is just laziness and eating doughnuts!

However, here's the rub. As you probably know, doctors are a deeply conservative bunch, and very risk averse. As a result they tend to ignore new research until it is proven over and over again. And the thyroid medics, such as they are, are all stuck in a loop toe-ing the BTA line in the face of overwhelming evidence that a substantial minority of patients need something more than levothyroxine. Most of the longer term members of this board are the victims of that thinking. We search desperately for a doctor who will listen and think outside the box, and we are sitting ducks for the snake oil salesmen because we are so totally desperate. Luckily we have some really knowledgeable members here who really, really know their stuff, and they help countless people regain their lives.

And there is more. Be very wary of so-called evidence based medicine. I have worked with doctors and was horrified by their poor understanding of statistics and science in general. It is that ignorance combined with the power of the drug houses that leads doctors to make some horrendous mistakes. Common ones we see on this board are a failure to understand what 'range' is and how that differs from optimal, and a belief that suppressing stomach acid production with PPIs is a harmless and effective treatment for heartburn. And there are many more mistakes that some quiet reflection might avoid.

Doctors like everyone else are only human. Quite intelligent humans, but nevertheless they are subject to the same frailties as the rest of us, plus, as a general rule, they are hugely arrogant. They are the cleverest, and have risen to the highest level that education will take them, so they must be right. I used to date a senior doctor from one of the London teaching hospitals. He was/is indeed clever, and better educated than I with only my postgrad diploma, but it just seemed to make him capable of bigger mistakes, and incapable of questioning his own wisdom.

So come here with your eyes open! So many of us have been forced to self medicate because doctors would leave us bedridden but 'in range' (often on the wrong tests). So many are left suffering because they haven't yet been brave enough to go it alone, and their doctors seem indifferent to their suffering. And tread gently or we will bite back! We have the energy to do so nowadays!

salsapixie profile image
salsapixie in reply to Ruthi

I agree. Sometimes doctors don't really listen to you fully. Sometimes they don't understand hypothyroidism outside of blood test ranges. Since being treated, I've gained about 20lb in weight and it's difficult to lose it. Doctors seem to think it's easy. Named G.P. is great it others make assumptions. When I saw one about treatment for depression I was advised to exercise so I pointed out that I was training for a marathon!

It was my named G.P. who diagnosed me. I sought help over a number of years for tiredness. Sometimes I was anaemia, sometimes not. Sometimes my TSH was high, then normal, then borderline. Before I got diagnosed, was told my bloods were normal when I called. Then a few days later got a phone call asking me to see a doctor. It was only because he took the time to look at the pattern of blood results rather than the last normal results that I got diagnosed. That action changed my life for sure. There are some good people in the NHS who do look outside the box.

Ruthi profile image
Ruthi in reply to salsapixie

Do you have your latest blood results, Salpixie?

I assume with the variations you have Hashimoto's?

salsapixie profile image
salsapixie in reply to Ruthi

I have no idea. I'm planning to get a print out next time I'm at G.P.

Ruthi profile image
Ruthi in reply to salsapixie

You'll learn never to trust a GP's interpretation! If you don't have online access to your test results (well over 5% do nowadays) then always get a copy. Your named GP sounds lovely, but they have a horrible habit of moving on (without permission, how dare they?!) and in the end it has to be your responsibility. Especially since you have the intellectual wherewithal to handle it all.

Roadrunnergreg profile image
Roadrunnergreg in reply to salsapixie

You need to know being in range ain't optimal, if you wonder what I'm on about try wearing shoes two sizes too small... See how your feet feel...

Bluecat101 profile image
Bluecat101 in reply to Ruthi

doctors wont do what their colleagues wont or think of something different to help (in case of being sued) When l worked in Pharma - which l had to give up as l have ethics - they said adverts in Medical mags were aimed at age of 8!

fibrolinda profile image
fibrolinda

Well said :)

Is the evidence really any poorer than a lot of the so-called mainsteam research (like eating fat raising cholesterol and therefore causing CVD) which has been shown to be influenced by the result the company funding it wanted to show. It's been said that research takes at least 17 years to filter down to primary or (even secondary?) care. Remember lay people often use the term "cure" to mean "almost completely alleviate the symptoms of ..." (as do GPs). So sometimes you just have to smile and nod.

salsapixie profile image
salsapixie in reply to Angel_of_the_North

I don't look at all Research as correct, that's for sure! A lot of studies funded by big pharma. Cholesterol normal ranges cut as a result and for years everyone blamed fat for everything, now realising sugar is far worse for your health. My cholesterol is high (6.6) but I refuse to take statins because a) I believe a lot of research is funded by big pharma who have gained millions from it, and b) because I don't want muscle issues when I'm very active,

Bluecat101 profile image
Bluecat101 in reply to salsapixie

We have to be thankful getting out of EU - as the TTIP agreement being sought with Brussels wd if agreed allow UK be flooded with American Pharma (who almost rule their Gov) here with contracts where they cd not be sued and not dismissed

jimh111 profile image
jimh111

I find patients, doctors and alternative physicians lack scientific rigor. Endocrinologists in particular put their elementary knowledge of the thyroid axis ahead of clinical presentation. If a patient has severe hypothyroid signs and symptoms and they respond to thyroid hormone then they are hypothyroid (using a wide definition - not just low hormone levels). If this conflicts with their theory then the theory is wrong. You don't alter the data to suit the theory. We also get nonsense on the other side. Statements like you are deficient in X which stops your hormone working. If it stops thyroid hormone working then the TSH will shoot up because substance X will stop it working in the pituitary.

If only we could have some good science from both sides!

Ruthi profile image
Ruthi in reply to jimh111

I agree.

However there is some excuse for the armchair doctors, they aren't supposed to be experts, and they generally arrived there (here) because of the appalling treatment the doctors meted out in the first place. So although they are wrong, and slightly dangerous, I don't lump them in with the endoknobs.

You are, by the way, wrong about TSH always reflecting hormones not working properly. I had a lovely TSH, but negligible amounts of free T3.

jimh111 profile image
jimh111 in reply to Ruthi

'I had a lovely TSH, but negligible amounts of free T3' I'm guessing you have a higher fT4 or perhaps a down-regulated hypothalamic pituitary thyroid axis. It comes back to endocrinologists adopting a scientific approach. If the TSH, fT3, fT4 don't make sense then they need to find out why and not titrate according to TSH. Indeed if the TSH is too low for the fT3 and fT4 then it will have knock on effects on deiodinase meaning the patient will need T3 treatment.

My point about X stopping thyroid hormone from working was that these sorts of nutritional deficiencies will affect hormone action in all cells, including the pituitary.

Ruthi profile image
Ruthi in reply to jimh111

I think that is a rather sweeping statement, re X affecting all cells. It may or may not be true, but in general the research hasn't been done to that detail. Often the effect is to block/fail to catalyse a reaction in a relatively local area.

As for the cause of my failure to convert, who knows? I did indeed have a high FT4, and optimal nutrients as it happens. But I don't convert levo. However I do appear to convert the T4 in NDT reasonably well. Since the effing doctors wouldn't even admit there was a problem until they had almost killed me, they weren't in a hurry to work out what is going on.

jimh111 profile image
jimh111 in reply to Ruthi

"block/fail to catalyse a reaction in a relatively local area" Yes, that's the point and where research needs to be done. Why do patients have peripheral resistance to hormone but the pituitary responds OK (i.e. the TSH drops as hormone increases).

Ruthi profile image
Ruthi in reply to jimh111

Despite its complexity the endocrine system is beautifully designed and supremely efficient until you throw modern living in. So evolution hasn't needed to worry too much about the few who got ill. I would love to know what causes so much AI disease nowadays.

Roadrunnergreg profile image
Roadrunnergreg in reply to jimh111

Not neccisarily so, you need to know your FT4/FT3 and RT3 levels and ranges to see what's happening plus other commonly deficient nutrients like B12, zinc, Vit D3, and highish cholesterol, just to start with...

Bluecat101 profile image
Bluecat101 in reply to Ruthi

Labs here appear to refuse to include T3. Supposed to do it twice and not

Ruthi profile image
Ruthi in reply to Bluecat101

Yes, my GP usually has to ask twice, and my TSH is 0 due to long term NDT use.

Now that Blue Horizon have a phlebotomy service I just plan to drive an hour to the nearest BMI hospital when I need it.

Bluecat101 profile image
Bluecat101 in reply to Ruthi

Thought l knew things; what please is NDT and a BMI hospital. lt wd be useful if people said where they lived or what Health Trust they used. For example here: Bournemouth Hospital and Southampton usually refuse to co-operate on patient records and similar. Lymington Hospital (where l live) originally tried to put me off having blood test because form was from Bmth

Ruthi profile image
Ruthi in reply to Bluecat101

NDT is Natural Dedicated Thyroid, like Armour. It contains T3 which is known to suppress TSH. And in long term use the TSH is permanently suppressed.

BMI is a chain of private hospitals. They have a phlebotomy deal with Blue Horizon, a private lab that does test T3 when asked.

Bluecat101 profile image
Bluecat101 in reply to Ruthi

Thanks for that. l have recently seen there are on line Labs we could use

Ruthi profile image
Ruthi in reply to Bluecat101

Yes, with pinprick tests. But I am needle phobic, and need someone to stab me while I lie down with my eyes closed.

Bluecat101 profile image
Bluecat101 in reply to Ruthi

Not always, the first one that came up had places all over country where you could go. Was about £69

Ruthi profile image
Ruthi in reply to Bluecat101

Oooh! What was it called?

Ruthi profile image
Ruthi in reply to Ruthi

OK, spotted it. Medichecks home finger prick. No good for me, but good value if you can do self stabbing!

Bluecat101 profile image
Bluecat101 in reply to Ruthi

Two came up and i dont remember what l asked, now cant find same but here is another after ages looking where they say they will tell you were to go: bloodtestsdirect.co.uk/

Angel_of_the_North profile image
Angel_of_the_North in reply to jimh111

... unless you have a pituitary problem as well ...

jimh111 profile image
jimh111 in reply to Angel_of_the_North

True ... ish If you have a pituitary problem your fT3, fT4 will be low. If you have low TSH, low fT3, low fT4 I wouldn't worry about X 'stopping your hormone from working'. I'm drifting off subject. The point is that both patients and doctors are not sufficiently rigorous in their analysis of hypothyroidism. So a patient with a damaged brain is supposed to know more that an endocrinologist who is supposed to be an expert.

Justiina profile image
Justiina in reply to jimh111

Exactly.

I told endo I have suffered a concussion earlier in my life so ih think it should be valid reason enough to investigate has it had impact in my health as I was the same than Ruthi above. Nice TSH , ft4 but rock bottom ft3.

Endo said I never ever have any problems with my thyroid function either way.

If he had tested me he had found out mt ft4 was rock bottom too which had been then enough to investigate my pituitary function.

Although later my TSH decided to react and has been creeping up slowly.

I'd like to ask the endo now does he really think never ever and can he guarantee that.

Going to a doctor next week again. Actually the hospital I was treated after the concussion. So they have all the information they need but I guess I have to go it through again as my ft4 has been rock bottom long enough it not be a one off and a mistake.

But if the doctor is as lazy as most them are he won't bother to look up my file from the computer next to him to see yes I really suffered a head trauma.

jimh111 profile image
jimh111 in reply to Justiina

Whiplash injuries cause secondary hypothyroidism so I guess concussion can also (maybe a mild form).

Bluecat101 profile image
Bluecat101 in reply to jimh111

l assumed for decades l was hypothyroid - with no help from Medics but better under a super Healer (now gone) Recently seen a young Endo consultant at Bournemouth and went with a long list of symptoms - easier than answering on the spot. This lady soon said: l think you may be low in Cortisol - do another blood test. When it came back low (through my GP) blow me GP wanted another test ??panic - and of course that was low too. l had rarely heard of Adrenal Fatigue - and the normal thyroid test doesn't cover it, when this lack can lower thyroid test figures. GP wd never query why l was on lowest figure or below for 4 years+

Marz profile image
Marz

Please click onto my name and you can read of my EDITED profile to wellness. Sadly those very educated Docs forgot to tell me I would need B12 injections/treatment for life when the Terminal Ileum was removed with the Ileo-Caecal TB that took years to detect - in spite of presenting with endless symptoms and removing a healthy appendix. I now live with the consequences.

It is the ripple effect in mis-diagnosis that concerns me - when B12 Deficiency and Thyroid issues are missed. Endless conditions are tested for and treated when it is the underlying root cause that needs help and can be treated inexpensively. The NHS could save squillions if they got their act together ....

Your comment about diet is key - sadly we are not what we eat - but what we absorb :-)

salsapixie profile image
salsapixie in reply to Marz

This is very true!

Everyone has a personal journey I think and getting well or at least optimal is a struggle for many hypo people. Diet and supplements did nothing for me eventually before medicated. Of course it helps many and is vital to those who have auto immune disease to stay ontop of the condition. Eating as healthy as possible helps but sometimes there are just too many other factors involved and you need medication also.

Hobnobbing profile image
Hobnobbing

I totally get what you are saying. Someone I know was promoting her juice diet as a cure for Lupus! At best it was well meant but misinformed. At worst it was cynical and exploiting vulnerable, upset people who are scared and don't know what they are really dealing with as well as being potentially deadly. Another post I saw was from a book called The Promise - full of feel good mush and nonsense. Apparently I have a dis - ease because I am not at ease. First of all, what does that even mean? Second of all... am I responsible for my chronic illnesses?

I'm not denying that lifestyle factors, good diet and positive attitude all make for better outcomes but as someone living with these illnesses, I have more insight and yes, I'm on a steep learning curve myself about how to live with these illnesses.

humanbean profile image
humanbean in reply to Hobnobbing

Apparently I have a dis - ease because I am not at ease.

Hahaha - does the same accident of syllables happen in other languages? No it does not.

French : Disease = Maladie ; Ease = Facilité

German : Disease = Krankheit ; Ease = Leichtigkeit

It's a bit like saying that Dog is God spelt backwards, so dogs must be gods.

in reply to Hobnobbing

Personally I think genetics plays a massive role in things. My sister in laws side of the family are never ill don't understand illness and are as strong as oxes, luckily my nephew and niece take after their side. Our side of the family are falling to bits and it goes right down the family line. Even my uncle who had a fantastic diet and emigrated to Australia at 15 became very ill from a long list of things and died young.

SimonA87 profile image
SimonA87

I used to work with someone who bragged about never getting sick and said it was all down to having a positive mental attitude.

That being said, there may be a diet component to my hypothyroid. Have you tried measuring your TSH before and during a restrictive diet? Mine changed quite a bit but my problems are with Free T3 levels which suggests my thyroid is not the problem.

helvella profile image
helvellaAdministratorThyroid UK in reply to SimonA87

Recent Guardian article which might be of some interest regarding those who never get sick:

theguardian.com/lifeandstyl...

Saggyuk profile image
Saggyuk in reply to SimonA87

Funnily enough, I have had tests before and after restrictive diet when they undertook 4 gluten trials and was the same result every time. They would test before and would always have low tsh, and then they tested after six weeks of being on gluten and my tsh climbed to 30-50 every time. It also took three months for my tsh to go back to normal after going back to gluten free.

I'm not sure being healthy or having a positive mental attitude stops the bugs - that I was never lol. I never got ill in my life no matter how ill the people around me got who snotted all over me. I always thought I had a hyper immune system but suffered the autoimmunity because of it. I also used to heal super freaky fast too and actually did totally freak out a number of medical practitioners on several occasions - they would check the computer, ask whether it was definitely that location they removed something etc, go and check the paper files and then come back and check the same area on the other side just in case they wrote left/right wrong then stand there and scratch their heads - one of them even dared to ask whether I was definitely me lol!!! I would also be the only one left standing after eating a meal which would provide a nice bout of food poisoning to everyone else.

The first time I caught the flu (well cold ahem) was when I first became pregnant which made sense as your immune system is supposed to lower. Since going gluten free and reducing antibodies and inflammation, I have caught the odd thing here and there and even got my first cough and I'm actually quite happy about this as presume it means my immune system is behaving more normally although I'm still hardier than most.

Maybe my system was not previously a hospitable environment to many bugs or viruses or maybe my immune system was over powered - who knows. The only thing I do know is that I behave like a man when I have a cold as not used to getting them lmao!!

elwins profile image
elwins

It was discovered over sixty odd years ago that I had a under active thyroid, after a lot of pushing by my mum, no heel prick as a baby, my mother always thought I was born with it. When I was a child no man made tablets, because of the type of tablet each one was different. but I am lucky it is fairly stable, even if it is for life.. Good diet does help, but you just have to accept it. It is something which cannot be cured but can only be controlled.

helvella profile image
helvellaAdministratorThyroid UK in reply to elwins

Have been wondering what happened when you changed from the old desiccated thyroid to man made (levothyroxine).

Did your GP explain anything? Did you just get changed over with the GP guessing the dose you'd need? Did it go fairly smoothly or was it very slow and hard to adjust?

There aren't very many who both post and went through that. For so many reasons, it would be good to have your account of what happened, if you would like to! (I suggest a new post if you take me up. :-) But don't feel pushed into it if you don't want to.)

Hillwoman profile image
Hillwoman in reply to helvella

I agree it would be very interesting to hear elwins' account. No pressure though. :-)

Marz profile image
Marz in reply to Hillwoman

Elwin made a new post similar to above ...

Hillwoman profile image
Hillwoman in reply to Marz

Thanks. :-)

silverfox7 profile image
silverfox7

I did that bit so long ago I can't remember much! When I was diagnosed I was put on extract as it was called now. Thankfully, as I'm sure that helped, my GP had just been diagnosed as well! With the extract I was asked to take my basal temperature and it was reasonably stable but I dosed accordingly, if dropped consistently I increased and if it shot ip and stayed there in the absense of other signs I would drop back. My husband was a lecturer in Endocrinology and it was ado his research topic in the broader sense so he helped my doctor to understand its workings plus he also understood if I got tired etch do it worked very well all round. My husband was a scientist though and not a medic though he was employed in a medical school and I think they are far ahead than the medics in many ways.

After a few years there was a strike in Canada where my meds came from so we were both without for about 3 months so I decided I would go over to Levo, may be a mistake! Both of us were struggling to work out how many tablets weee needed to cover me for two moths but eventually we arrived at 56! Being without had certainly left its mark. I then started on Levo. Can't remember much about the switch over but I was fine and I don't think any fine tuning. I'd already got my family but the time I was diagnosed and my husband recognized the symptoms butcitcwas seemingly a long time before bloods shows this. I was fine on Levo, 75 mcg I think, until the menopause. By then my husband had sustained a brain injury in a RTA and my excellent GP has left. I finally moved up through a hundred and then 100/125 though not perfect. I was never offered a trip to see and Endo and by then I had heard very disturbing things about the msn in charge so no way was I going there! I had lost my husband by now and he had said never to see him but didn't say why. Thankfully for me my new GP was someone I'd known as a student, I'd worked with medical students, and he told me I could take what I wanted as I couldn't take too much!!!!!! Great for me but not helpful for others! But I'm a cautious person so went to see Dr Gordon Skinner! Unknown to me at the time after my first visit he had asked my now new GP to either add T3 or put me on NDT. I was never told this and I got my notes from Dr Skinner's office after his death and it was documented. She told me never to go again and reported him to the GMC as he had never contacted her which I said I thought that was very strange as hecalways told me he would. I refused my name yo be put forward to the GMC but when I received the copy of my notes much later I found the copy of the letter he had sent so felt sick as I thought I had given the wrong address! Low and behold her replies were there saying she would ignore his requests etc. do I lost my faith in doctors though this one had retired. I now felt very much on my own but found HealthUnlocked so I did try my best to make myself as well as possible. The breakthrough was realising thstvi was t inverting well so raised my supplements I'd mostly taken from day one and added others in. I also found I had loads of food intolerances so ate according to what my body liked and my weight went down by half a stone and my bloods improved. New endo turned down adding T3 as it was improving g and now half way so wanted to see if it kept moving. It did but not quite there. In the last 2 years I had been thinking of going back to NDT so was eagerly reading every pod time could butvtgen heard a lot about one overseas which I could get without prescription and read only one concern that it may be had a little bit more T3 in it but was t this what I needed so gave it a go! So been doing that for 2 years now.

So glad I got some experiment in the early 80's on NDT. Levo worked very well for me for a time but after the menopause glad I found NDT again. By now I was very used to listening so my body and my back ground has been a huge help as well. Highstight said I should have stayed on it from the start but as we all know hindsight is a wonderful thing. Last year I had two operations and sailed through the pre med because I had a letter from an Endo who said I was fine on it and I knew how to manage it. So why am I still on this forum? Medicine is always evolving etc so I want to keep up to date with ehstvis happening but above all I want to help others if I can from my varied experiences so dortyvthis is almost a book but thing it a very good post to show both sides of the coin from the same person. Levo also brought me free prescriptions, useful then as could get vitamins with them. Wish we could now though I suspectcit would be for inferior brands. So I've found my journey interesting butvit also helps to have good people around us. My GP couldnt condone my doing it alone but would do my bloods, the labs wouldn't! But my endo has now turned me over to a junior member of staff which I suppose can be a good sign that he thinks thinks going well but the underling started panicking that my TSH is 0.01. I gave as good as I got but finally said how did he know my pituitary was working as it should! He stopped then and gave me the osteoporosis letter etc but wrote to my GP saying l had good knowledge of the subject so happy with that! Now she is happy and I'm certainly happy so alls well with the world!

StitchFairy profile image
StitchFairy in reply to silverfox7

It's interesting to hear from someone who's been through this from the days before levothyroxine became mandatory. You're not the first person I've heard say things went wrong when you hit menopause. There is obviously something going wrong when the balance of sex hormones changes.

janveron1 profile image
janveron1 in reply to silverfox7

Thankyou so very much Silverfox for thinking of us and sharing your experience. My mother had 30+years of Armour prescribed by her doctor because she was diagnosed in 1958. She was lively and energetic until she died of natural causes at 87. She was not around to help me go self medicating but memories sustain me. I am on Nature Throid and doing better than when on Levo.

Thank you again. Janveron

Bluecat101 profile image
Bluecat101

You are right. lve been ignored by Medical profession for over 40 years and at last got diagnosis of low cortisol when cd barely function at times. Even friends hinted l slept too long and too late and you can see they dont believe you, especially as symptoms can vary. Now they know why, and had battle with nice current gp to get to Endo

Kitten1978 profile image
Kitten1978

People make a lot of money selling books on special diets and supplements. It's a big business. Besides, we have limited control over our lifestyles (I would love to cycle to work but there is no cycling path and I don't want to risk my life cycling on the road) and over what we eat (e.g. even if I move to Alaska and grow my own vegetables I will have no influence over the pollution in the atmosphere and in the water). We cannot eliminate all that's unhealthy and our world is simply becoming less and less healthy place to live (although according to some the global warming has been "invented" by the Chinese to destroy USA economy...).

I get what you are saying though: my acupuncturist offered to cure my hypothyroidism with acupuncture and iodine... I lost my respect for her when she did and I never saw her again.

UrsaP profile image
UrsaP

One of the points that always gauled me is when you read things like 'there is not evidence to prove NDT, ( or such,) is more effective than synthetic t4', when there are no studies to make those comparisons, but the way it is worded may lead people to believe that these has been tests, and studies have been conducted. This to me, is unethical and misleading.

Hello Salsapixie, I don't think you should be taking such things personally, these people are only trying to help. It has been proven, by research, that 99% of people who have hypothyroidism have hashimoto. Autoimmune problems are all connected to the digestive system and often there are inflammations in the gut due to parasites, candida, H pylori, toxicity from all the sprays used on crops etc. causing leaky gut. Each individual will find what is going on in their body and through a lot of research trial and error can heal themselves. Yes, one can go deeper and attribute illness to certain stresses, emotional events etc. and this can be looked into down other meditational paths.

Do not get upset, it's a long journey, but in a way a gift :)

sandybabe40 profile image
sandybabe40

Most humans behave like animals to others with issues. My illness came about: I was a health freak, almost vegetarian. I was given substances from being a child and I was unaware of it.

I developed arthritis but my doc gave me Prozac and never bothered to call me in with the results. They then gave me an injection of radiation to Xray my bones. I did the research this type of treatment unstabilised the thyroid resulting medication for the rest of mt life. I do not tolerate Levothyroxine well. But still get no understanding from the medical profession. I have multiple reactions to most medications.

I did a juice diet, I no longer have diabetes, but I think that diagnosis had more to do with the thyroid problem. But you can never tell a doctor (S) they are wrong. I now after several years of miss treatment by the NHS that I have developed a mental health issue. And all the mistakes they have made are not even taken into account.

I would like my mental health issue to turn into a suggestion Jeremy Clarkson declared on TV. He suggested some be shot in front of all their families. I second that with the other failing NHS workers I have had the displeasure in being in front of. I feel so sorry for all the hard workers in the NHS. Cases like mine and others have dragged the NHS to its KNEES.

Don't just trust your doctor the drug companies have the powers over the doctors. I have known one woman who cured her cancer but was poisoned by what she took. if she took smaller dosage she would have been cured. research what radiation will do to your body and you will never go for NHS treatment if you have cancer. Both alternative & medical should be working together.

silverfox7 profile image
silverfox7

Phew lots of comments over such a wide range! I'll just throw a few things in that may or may not be helpful!

I was diagnosed pre internet etc so felt very alone though my doctor was in the same boat and did a lot of research and my husband filled him in with the workings and what could go wrong-wish I had listened! So I think we must be grateful we know have the wonders of the Internet at our disposal but it also leaves us open to alternative 'theories' which may or may not be helpful. So we must also remember we are all different people and what works for one may not work for others but that doesn't say it had to be wrong, just may be working for you!

I would look at various ideas and think about what they were saying and which one I wanted to try first and if it doesn't help try something else.

Drug companies, yes we don't like them but we can't live without them! Who else is going to throw money at research if they don't get money back at some point?

When I first met my husband he was doing a PhD on TRH so thyroid related. You can't just walk into a University and say I want to do X and be paid Y salary it's far move complex. I'm going back to 1969 do things may well be different now, I don't know but my husband I think was asked by a senior member of the academic staff if he would be interested to do three year research on ------- and if the drug company were interested then they would give a grant. This would cover pay for three years at the staring rate for junior lecturers so he wasn't getting a fortune, then the university needs paying for the lab space, the utilities, glassware and the rest of scientific equipment and that's not cheap, drugs, chemicals, use of a secretary and all that entails, animals and that doesn't come cheap as they are specially bred and not pinched from someone's back garden etc. they then need a technician trained to a reasonable standard and so the list goesxobe and the money is needed for the next three years. The research topic had to. E agreed by the drug company and the supervisor as well so it's a very expensive outlay and not guaranteed to have a useful outcome.

So it's understandable that the drug company want to get there money back. They own shares in their company and in a good economic climate they can make money but shares can go up and come down and later years haven't been that successful. My husband got his PhD and then a further grant to continue his work. We never had any money as he worked with people in the states, Netherlands and South Africa and he applied for grants when he could. After the three years he was offered a lectures post in another Univerity town but commuted as that was cheaper than my not working and he continued writing papers etc around the world till was critical injured in an RTA leaving him brain damaged. A rocky and finally a frightening journey but he couldn't have done it without the drug company funding him. Just wanted to put it out there as I know we moan about the cost of drugs etc

Roadrunnergreg profile image
Roadrunnergreg

Hi I seen over 50 replies so not read em, but here's my take and experience. Whilst doctors are taught medicine unfortunately their not taught enough about nutrition, and how the body works in that respect, doctors seem to be taught that give your patient Levothyroxine it will sort it, but for things to happen properly you need a good range of nutrients.

It's my firm belief that if you have a thyroid problem, you've got an adrenal problem that's preceded it, due to an amino acid deficiency, seeing as the adrenals thrive on amino acids... This was my biggest improvement... If you have a fatigue problem your deficient in amino acids, if you have a high RT3 you have adrenal fatigue and amino acid deficiency too... Their interlinked period...

Vanessa09 profile image
Vanessa09

My goodness hearing these people's radical claims has made me angry just reading them!! My daughter was diagnosed at 3 weeks old with hypo so I'm assuming her diet of bottled milk (because she was too ill to take to the breast) were to blame!? She's going through so much rubbish right now, I'd give anything for her to be "better"! :'(

UrsaP profile image
UrsaP in reply to Vanessa09

I'm sorry to hear about your daughter being hypo. I would not wish it on my worst enemy!

My son is struggling with increasingly similar symptoms to those I had growing up and all my life - I'm now 55, he is 22. If I try and talk to Dr's to ask them to consider he might have same condition, because I have seen symptoms, for many years, of lethargy and coldness, plus his body temperature being way below normal, I'm effectively labelled 'Munchhausen'. Dr's will not consider I might have a point. They say his TSH is 'normal' even though creeping up, and mine was 'normal for about 12 years before they diagnosed me - despite all the other symptoms! They seem to want to look for any other reason but thyroid. Though Dr P, having seen him a couple of months ago, thinks he is struggling more with Adrenal than Thyroid - We know they are linked. I too have had, and I am currently trying to regain adrenal health.

I'm on t3 only now, for some years, having proved for 20+ years that t4 didn't work for me, yet apparently they want to remove t3 from prescription because of it's low benefit value along with the recent hiked up prices (Which NHS seem to have done nothing about - which I find odd)

Thyroid is in the family. Hyper and Hypo. And my mother died from TC last year. I think I am entitled to worry about my son, and the future of the quality of care that may not be available to him and others that need it.

There are a lot of claims radical or otherwise on here. People feel so strongly because they are living through, in many cases, hell. They are on here, because they have been forced, through misdiagnosis and mistreatment, to go against GP's and look for alternative help and assistance to regain some sort of quality of life.

The knock on effects of this condition is devastating. People, myself included had to give up jobs and life opportunities because of it. My son, a bright and able lad, at 22, has already had to forfeit a Rugby scholarship and is already two years behind his peers.

Try not to get angry with the comments. People do feel strongly. I suppose this forum is one way we can voice our opinions and let of steam, to people who generally understand, because they are in the same boat.

I do hope your daughter gets the treatment she needs. I wish you both all the best.

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