Is anyone aware of any organised type of protest that might have been arranged by thyroid patients over the years? I ask because I have never been aware of anything and I am heartily sick of hearing what is available on the NHS and the things that are not allowed as far as thyroid is concerned, ie here in Stoke, not a lot is allowed, even less than what is allowed in North Wales to my absolute amazement!
The temp GP did test me for type2 (negative fortunately) and TSH, which was .33 mU/L not T4 or T3 which he says are not necessary. But he has agreed to test for antibodies, gluten intolerance, another check on my Phosphate level etc etc nothing else thyroid related. I took a letter into surgery yesterday saying that I am thinking of self medicating and asking if he would also consider testing me for TSH, T4, T3, and the host of vitamins that are necessary, because I need those results before I can proceed and what the NHS won't test I will have to pay for privately.
I rang surgery asked whether GP had agreed to any additional tests and was told that he had added some to my current blood testing order, but a couple of my requests were for tests not avilable on on the NHS. So I am looking forward to seeing just what I can be tested for on my yesterdays request and what is not allowed.
Out of over 20 years of being tested, taking Levo, etc etc never have been allowed to see my thyroid results, I finally got my history of testing from GP, last week - if you can call it that. Over 20 years and I got a total of 4 results, all that were on my records apparently. I got no indication of what Levo doses I was taking at the time of each blood test, none for any time at all that in fact.
So I am furious again that thyroid, being so abolutely important for the human body - health generally - is just ignored.
Is anyone in any way inerested in setting up some sort of protest online with a view to making it absolutely clear just how many of us are being ignored by the NHS within the uk? How many can get no sense out of a GP, etc etc I would love to set up a flipping march on Parliament, or something big like that.
My family are all saying to me that if I was right and something is wrong with me, then the tests that I have asked for would have been done for me by now. If they are not allowed, then that is my fault for being inflexible and paranoid, trying to find an excuse for the weight gain etc etc which has to be because I am sitting here doing nothing while stuffing my face with cream cakes ('as the girls do in our office here every day and then they complain that they want to lose a couple of stones')! Which is basically what this temp. GP told me last week, walking for an our a day is ok..... though pretty useless and I should be doing Fitt training, especially Burpees, (google them) x 5 per day, stop eating so many calories because at my age (68 in June) you really don't need thousands per day and you can't expect to have good nails, a full head of hair etc etc at your age - the burpees will sort it all out for you and eat less of course!!!!
I just think that they are all winning and we are all having to pay for our own tests, treatment etc etc, being totally ignored for the most part.
We need to make a noise, make the so and so's aware that we are not an odd patient or two who are trying to find an excuse when they sit on their a** daily stuffing their faces!
I remember now why I gave up over 20 years ago and tried to forget all about my thyroid! I am beginning to feel the same way again.
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BrynGlas
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You can become a member of Thyroiduk.org.uk as it is they who work behind the scenes to try to change attitudes.
They also met with The Lords after the T3 fiasco so I hope something comes from this meeting.
After you read the following link, print the 'polemics' for your relatives/friends and any doctors as the lady who also wrote it also wrote a book called 'Tears Behind Closed Doors'. This is a 'Must Read Book' if hypo and is available through TUK. I was horrified when I read it.
I believe every word she wrote yet still, I believe a majority on this forum have gone through similar experiences - myself included.
Diana went on to work with Dr Gordon Skinner - another brave doctor (now deceased) and for his kindness/sympathy for patients he was called before the GMC several times because he diagnosed patients/treated them because he was taught before blood tests were introduced along with levothyroxine. He also diagnosed and treated Lorraine Cleaver and she put her case before the Scottish Parliament and they agreed that if levo wasn't working, patients were entitled to have options.
It certainly wasn't Dr Skinner's patients who complained and there were 10,000 Testimonials in Red Folders presented to the GMC who found he was doing nothing wrong. Who complained about Dr S????? I think because he wasn't an endocrinologist it might have put some noses out of joint.
It's unbelievable and I believe thousands have or still do suffer the consequences of the 'modern method' but may not have access to the internet.
The Polemics Surrounding the Diagnosis and Management of hypothyroidism:-
Just got back from picking up my new list of blood tests that I asked the GP whether he might consider adding to the tests that are already down for testing next week.
He says Free T3 is not something that the NHS does, it is no needed. Don't know whether they still do it in Wales, but they were testing for TSH, T4 and T3 as recently as Feb last year.
Well we can do nothing then can we? Why have I even bothered joining ThyroidUk and attempting to get myself sorted again?
I remember buying all of this out of my head years ago, the absolutely useless fight to try to find a way to get things right. I don't see any possible way that it is worth fighting for, because nothing changes or will change it seems to me. Maybe if I go and start bingeing on the cream cakes - as my temp gp says that I must do - my weight will disappear?
He says Free T3 is not something that the NHS does, it is no needed. Don't know whether they still do it in Wales, but they were testing for TSH, T4 and T3 as recently as Feb last year.
My surgery's blood is sent to Ysbyty Gwynedd for testing and my TSH is always suppressed so FT4 and FT3 get done every time even though not requested.
Both my son and his girlfriend (who live local to me, same surgery) had thyroid function tests done last year as part of an investigative bundle of tests, TSH and FT4 were done and for both of them the results were within range so FT3 wasn't done.
I give up.
I understand. As far as my surgery is concerned (and an endo I saw at YG nearly 20 years ago) I, too, have given up. They haven't got a clue. I do my own tests, have sorted out my own low nutrient levels, discovered myself I had a conversion problem, adrenal problem, etc, and self sourced T3 to add to my prescribed Levo (which my GP knows nothing about). I dodge NHS thyroid tests when I can and when I can't we get back onto the merry go round of "You are overmedicated, your TSH is suppressed" … "No I'm not overmedicated, look at my FT4 and FT3".... ad nauseum.
The only way to help myself, and save my sanity, was to take matters into my own hands.
Well, I have told my GP here that I intend to self medicate, I am not going to hide it. If there is any way that this can raise my spirits I owe it to myself to try it.
Seaside, I feel that I want to go down the route of NDT, you are on T3. I have to go down the cheapest route to be sure of being able to afford to continue it.
Could you tell me whether T3 or NDT is the cheapest option? I suspect that it will be T3.
Where do you live please? You must be near me if your tests etc are done at YG. I live near to Penygroes/Carmel, around the opposite side of the mountain, overlooking the Nantlle valley facing south.
I take a combination of Levo (prescribed) and a small amount of T3.
NDT without prescription, the only one I know of is Thai NDT and the brand is Thyroid-S. From what members have said on the forum recently it is currently not easy to source as there seems to be a shortage, and it has recently increased in price quite dramatically.
I understand that some members are having problems finding a reliable supplier of T3 (there are some known unscrupulous suppliers that take orders and payment but don't deliver) and I don't know the current price for that.
You would need to make a new post on the forum asking if members are willing to share their source of supply, and ask for replies by private message only.
We've had a lot of rain, heavy at times. We've had an awful lot of strong winds lately anyway and today hasn't been any worse (yet) than some of the other days. Over the last couple of weeks we've had waves crashing over the prom destroying part of the wall and high tides, I doubt it can be much worse.
It was Storm Ciara that did the damage where I live last week but we have a lot of strong winds (being on the coast) even when storms aren't big enough to be named, they have to be Amber or Red warnings to be named. I read that the storm names go alphabetically and alternate between male and female. The names are suggested by the public but chosen by the Met Office. Maybe Ethel will be next
That's good you are a member but I don't think you're aware of what Lyn Mynott does with regard to trying to change attitudes. I will add lynmynott so that she can read your response.
She began TUK in her home. She now has one assistant and another member of staff . I don't think we appreciate how much goes on behind the scenes.
I wouldn't have progressed as I have done due to TUK as I was directed to the few doctors (now deceased) who didn't put up with the nonsense stated by the 'official' organisations who you'd imagine would be as knowledgeable as many on this forum, but we find out that's not the case. One fact is that few GPs have little knowledge except to look at the TSH and have no incling as to what is an inactive thyroid hormone or an active one.
One GP phoned to tell me my T3 was too high and T4 too low. I said 'that's right doctor' as you know I take T3 alone so my T4 will be low. He then said but T3 converts to T4! - I said "sorry doctors" it is the other way around.
Shaws, I wasn't complaining about anyone. I just didn't know what was happening, had never heard of any protests or that sort of thing, that was why I asked on here. The poor woman will think that I am being nasty and calling her for all sorts. I honestly wasn't, but if I had not asked I would still have been non the wiser, wouldn't I?
Don't worry but changes are very, very slow in coming. At times we wonder why things aren't moving forward at all.
It would be wonderful if we again could also be diagnosed upon our clinical symptoms initially but 'modern day' doctors have no knowledge about clinical symptoms at all and are apt to treat a 'symptom' with something other than thyroid hormones.
Dr Skinner's associates hope to publish all of their scientific evidence when they have the funds to do so. Dr S was one of the 'old school' who knew and diagnosed upon clinical symptoms. They have stated it would 'shake up' how people are diagnosed. Who actually reported Dr Skinner, more than once, because he did as he was taught as a medical student? He diagnosed upon clinical symptoms and gave patient a trial.
No wonder he had patients from all over the country.
The fact that 'lies' (or misinformation) was stated in order to remove NDT from being prescribed even though it saved many lives since 1892. Just like T3 - removed without warning or notice and leaving patients high and dry and anxious. What kind of medical associations would do this.
Despite Dr Lowe sending the following and then three yearly reminders for a comment before his untimely death the association did not reply.
NDT was the only replacement since 1892 and was always prescribed upon clinical symptoms alone up until the 60's when Big Pharma could see a way of making money with T4 alone and blood tests .
We used to be prescribed NDT - withdrawn. T3 - withdrawn (the cost was a perfect excuse). This reveals that those at the 'top of the tree' care nothing about relieving clinical symptoms and probably know none at all. The reliance upon the TSH level which varies without the day. Do they think we're all neurotic if levo doesn't work(probably).
Considering that NDT (contains T4, T3, T2, T1 and calcitonin)was made from animals' thyroid glands with all the hormones a healthy thyroid gland would have provided we're left with levo (T4 alone).
I think I have to go onto NDT, I am drawn to that but got to go down this route of getting my tests done first, otherwise I won't have a clue where I am. Next date for bloods is the 18th, Tuesday next, won't get results until possibily Thursday - but probably Friday - review those results and possibly then order any further results that I need privately, wait for those results, then I need coaching for where I get NDT from and how much it costs/ dosage etc etc?
The following is from a (deceased) Adviser to Thyroiduk who was also a researcher and scientist and he knew everything about dysfunctions of the thyroid gland. I hope his advise on 'Safely Getting Well on Thyroid Hormones' is informative. He himself would never prescribe levo, only NDT or T3 for patients who were 'resistant to thyroid hormones'.
Last year I wrote to my MP and she told me she would put my case to Matt Hancock and she has replied again just to tell me she is still trying to get a response. I honestly think the NHS don't care about thyroid patients even though untreated people are probably putting a strain on the service. I look around and see a lot of overweight people and I wonder if they have thyroid disease. My own cousin is a size 22 and I think she is hypothyroid but she tells me her GP tells her that her TSH is fine. If that is the case why cannot she lose any weight because she has been on a permanent diet for years now. I wish things would change but I really don't think they will.
Ask your cousin to get a print-out of her results (and that she had a fasting blood drawn as early as possible). Or get a private test from one of the recommended labs.
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
She is really not interested and is a recluse and won't leave the house without her husband. I have tried to help but she doesn't want to see a Doctor because she doesn't like them. She is 59 years of age and we used be like sisters when I was child but things change.
Well, Lora7again with a person who has that attitude (although you feel sorry for her), there's nothing else you can do. Maybe she's just become used to depend upon her husband alone plus tied up in her own illhealth that she thinks others dont understand her suffering. We definitely do.
She is a very self centered and does not have any empathy with anyone. She once asked me for help to divorce her abusive husband. By the end of the day we had a man there with a court order to evict him from the house. He had actually harmed one of their children and she was frightened he would kill her. Not once did she thank me but moaned about the cost of the divorce. We are both only children and perhaps a bit spoiled but I have always tried to help others when I can. She has always just put herself first even before her own children and she now wonders why they hardly visit her.
Yes, but we are all programmed differently shaws and that lady is in despare if not in depression - might also be both.
Yes, but I got so down thinking of thyroid issues and determination firing my brain up (....'I will get myself better......I will get myself better' ) that and I just shut it out of my mind totally for years. I only got into it again because I couldn't get any help with my weight problem and the fact that I just could not cope with it anymore.
Poor woman, and how many others out there are pulling whatever hair they have got left out by the roots today?
Lora I have a neighbour near me who is like a stick insect. She eats a terrific amount of food each day, is always busy, bustling around the house/garden/caring for her animals. Won't answer the door or phone when she is eating and eats in her bedroom with the door shut (she does live in a single story Welsh longhouse).
If you saw the mountains of bananas that Sue has delivered each week by Tesco you would me amazed, I have never seen as many in most ordinary supermarkets, never in a regular shop. They are stored on the living room window-sill, that's how I know. At the beginning of the week, the amount of bananas must reduce the light in that room dramatically, it is a small window, the walls are 18"-24" wide stone and a good 50% of that space is taken up with bananas, width and heightwise.
She is agraphobic, paralysed by anxiety. Has been forced out of her house in the past year only because she lost her brother, father, then mother and she had no choice but to leave the house and go to their homes to care for them.
Before that the only time I have known her to go out was when I took her to the hospital because she had broken her collar bone. I can't tell you how hard that trip to the hospital was, she didn't want an xray because of 'radiation', kept telling me - 'MRSA Sandra, MRSA'! Looking around her as though the little MRSA critters were about to jump on her. Eyes wide, and shaking like an aspen leaf in the breeze.
My guess is that it is hyperthyroid???? She won't be tested for it because she won't go through her front gate to see her GP. She goes for lots of hippy style food/lifestyle and these days vegetarian to all intents and purposes.
And I can understand Sue's anxiety and her need to keep herself within her own property. I have been there and done that myself, shut myself up in my room and haven't wanted to open the curtains, never mind to answer the door or phone. It is easy to do once your family have flown the nest too, no incentive to go do stuff of course and what difference does it make to the world if you don't go out anyway? None of course.
I feel for your cousin, I can see myself in her, though I would prefer to have Sue's problem than mine and your cousin's, I have to say.
If you have no high opinion of yourself anyway, you are bombarded by health issues due to your size, health issues when you see that blob in your mirror every morning, you feel the self-lothing when you have done everything to lose weight, stand on the scales and it hasn't worked, your GP is lecturing you to 'eat less cream cakes, do your burpees daily, because your weight is almost off the scale you know Sandra!'
Your poor cousin, Lora. I presume that she would like to put on some decent clothes, look in the mirror and actually think that the image within is not bad at all thank you, to actually have some energy on occasions, to get a boost from any little thing that makes her feel as though there might be a life out there for her, because she has no quality of life at the moment.
My neighbour Sue, she has no quality of life either, for different reasons. She can't sit still, she is buzzing all the time, has ants in her pants 100% of the time.
But she has mine and your cousin's problem in my opinion, no self esteem, no life. She is existing only, we may as well all lie down in our coffins and wait because we are without any expectations of getting more from our lives, and no hope of that ever appearing out of the gloom.
And with thyroid, low or high, no one seems to win, because we haven't got the flipping energy to keep trying and no one thinks that we are human or important. The politicians are as apathetic as I am - sorting thyroid patients out seems like a lot of trouble doesn't it?
According to the page for Thyroid Uk, interpretation of thyroid results then, my latest TSH is high, (0.330 mU/ whatever it was, I know I have put it on here somewhere.) It was 0.2 at one stage, can't be bothered to look them out now.
I was encouraged that the Thyroid Trust conference in London I attended last month (see sep post) was attended by
a Guardian journalist with a particular interest in people stripped of T3 meds
a Scottish MSP with thyroid issues and hence "skin in the game"
and that, like Thyroid UK, Thyroid Trust has an "insider" in the House of Lords
whether any of these will make an appreciable difference is moot. As helvella has previously mentioned, any sort of progress is soooo slow it make glaciers look speedy
I can totally agree with you I'm no novice to thyroid illness as I was diagnosed with hyperparathiyroidism in 2004 which took 9 weeks to diagnose .skip to about 3 and a half years ago I became ill I knew it was either my parathyroid going overactive again or it was the actual thyroid, symptoms were somewhat similar. What anger me was the fact my gp did not listen to me he put all symptoms down to the menupause!! It's taken 3 years to diagnose me with hyperthyroidism/ graves.. I've lost my thyroid to it being toxic had my TT in May last year I'm now on levo because my endo and gp have absolutely no idea about this condition I've now been left under medicated I'm not doing well on the levo I have colitis and its flaring up when I take the meds... Gp and endo know this but are dismissing it, I fight to get T3 T4 bloods done I have to ask the nurse what bloods my gp has requested its usually only TSH which as the more informed people on here know really means nothing.. I tell her to do the relevant tests and she does add them probably to the discust of my gp.. One thing I don't get is when I had thyroid storm everytime they took bloods it was always TSH, T3, T4 anti bodies the full works... So if T3 and T4 arnt that relevant why did they do them tests the 10 days I was in hospital 🤔🤔 it can only be because that's what they should be doing but probably money is the problem I can bet if my gp had this condition he'd want the best care he could and He would probably get it where we have to fight for it shame on the NHS service 😠😠😠😠
As someone with Hashi's, I'm wondering if the NHS ever intends to supply Hashi's patients with a form of T4 (or T3) that is actually appropriate. All the brands produce medication that is full of allergens, toxins, carcinogens, and cheap fillers that irritate the digestive tract.
People with Hashi's can't tolerate all the crap in these 'medicines', yet there doesn't appear to be a single version of T4 out there that's available on the NHS without all the nasties.
I asked for Teva, as it has no lactose. It made me very ill. I'm now trying Wockhart, but am still getting digestive issues - probably from the lactose.
I'm still smarting from having to stump up £38 today for my NDTs. Fair enough if the NHS supplied it and this was my choice to buy abroad. But the NHS either cannot or will not do this, so we shouldn't have to pay import fees and VAT, since we're essentially letting the government off the financial hook by buying our meds ourselves!
And as others have said, also paying privately to get the bloody tests done!
If you could buy desiccated thyroid in the UK, you would be paying VAT. That is what is added when your purchase from abroad. If they did not charge VAT, it would be seen as unfair competition.
That was the situation when a vast proportion of the CDs and DVDs in the UK were being bought from the Channel Islands. That resulted in major changes to rules so it is no longer the case.
(I agree about the customs clearance charges which can be very unfair.)
Now, whether we should be paying for our medicines, or any VAT on medicines at all, that is another discussion.
I wasn't aware that VAT was applicable on medicines, just as with certain foods. I thought VAT was meant to be a tax on luxury items - although subsequent neo-liberal governments since Thatcher have stretched the boundaries of what could be considered 'luxury' beyond all recognition, such as utilities, for example. Not sure when heating your home or cooking food became a 'luxury'.
I know the import procedure requires payment of VAT on all items coming from abroad, but this is then claimed back by the importers and those down the line until it reaches us mugs: the customer.
As for the £8 Royal Mail takes for taking a payment and handing the package over - don't get me started. We aren't charged extra if we aren't in to take a package that needs to be signed for and have to collect from the Post Office. It's not like Royal Mail actually delivers the damned thing.
I have known for many years that the whole medical establishment stinks to high heaven due to my campaigning for cannabis legalisation. But developing Hashi's has been a real eye-opener into NHS corruption even for me! Then there's the sexist HRT scandal - and, of course, it's mainly women who get thyroid diseases.
What a world we live in. And, as a country, we keep voting the bar stewards responsible back into power!
Yes I am Michelle. I don't live here in Stoke I am over wintering with family here, so I have become a temporary patient here.
This is the GP who tells me to do Burpees x 5 to have weight literally dropping off me effectively. He tested me for TSH and type 2 diabetes. Results were 0.33 mU/ and negative respectively. He also told me that T4 and T3 are unimportant because our bodies convert T4 to T3 and so they were not important in the scheme of things.
I pointed out that I had a close family of auto-immune conditions, including Type1 diabetes and coeliac disease and that I wondered if I might have Hashimoto's. So he said he was testing me for both of them.
Over last weekend I wondered how I was going to get him to add vitamins etc etc. I decided to write him a letter telling him why I was asking him to consider adding the additional tests as well as T4 & 3, the vitamins too, because unless I know these base lines I could not work out where to start self medicating.
He refused T3 because he said that T3 was not tested in the UK , and he refused Selinium too, said there was no test available for it. He had added a note onto my letter, beside each one of these tests that I had asked for.
But on reading the instructions to phleabotanist (spelling?) he has added T3, so watch this space. T3 just might arrive on the new results, that is all I can tell you.
Excuse my French, but that's BS. I get my selenium tested on the NHS. I've also had free T3 tested. And free T4. I had to insist, though. I also insisted on zinc and found that was virtually non-existent. My hair was falling out like I had had chemo, but when I mentioned zinc, I was told it was down to having Hashi's and that zinc had no affect on hair loss. Seriously! I upped my zinc and within weeks my hair loss had slowed dramatically... and I have a GP with Hashi's. If she didn't know that, what hope do we have?
I never take a word of what they tell me at face value now.
Yes, I wish I had put a bet on with Ladbrookes that someone would tell me that the doc was making it up! roflmao!!! It's nice to be proved right. B. awful thing for the Dr to say, but I was sure that someone had mentioned selenium testing on here before, that's why I asked for it. I didn't think that he would stop it, but he already told me that the NHS don't test for T3 and they did it in Wales last year for me and if it is available in Wales it is still the NHS. I also found 2 more tnyroid results from 2005 and 2006 where they did T3 too
I don't blame you. Maybe your GP is one of those people who don't have problems with NHS use of Levo or whatever he takes. Or maybe he doesn't want to tell you, because he might get in trouble with NHS?
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