Warning! There are a number of websites with unhelpful and inaccurate information about thyroid disease which should be ignored. The links given here are recognised patient support and information sites recommended by the BTA. The BTA is the only national professional organisation in the UK composed of research doctors and consultants who are accredited by having completed higher professional training in thyroid and other endocrine diseases.
I can't imagine why thyroid px would give a stuff about the "research doctors and consultants accredited higher professional training"...they know diddly squat about thyroid and adrenals from what I read here.
They also ignored Dr Lowe's scientific critique to them, which pointed out the flaws in their guidelines which keeps many unwell, some get more chronic conditions too. Despite about 3 requests from Dr L, they never replied which, I believe is ignorant and have closed minds to patients who are not recovering on levothyroxine alone and doctors keeping patients 'within the reference range', ignoring clinical symptoms and diagnosing only on the flawed TSH.
The BTA (which comes in behind the British toilet association on a google search) is a closed group of experts their words !!! Who take no notice of the people it is set up to help. They cannot answer individual queries. Surprise, surprise. Is this because we might ask why they have a job as thyroid treatment in the UK consist of a blood test and a prescription which actually does not require any input from GPs never mind Professors who are probably paid a kings ransom.
Another way to look at the BTA is as a Dictatorship who will tell us what we need and take no notice of our symptoms. We need advice on how to bring about a revolution (reminds me of Ukraine) but they would close ranks with the drugs companies and also they stay behind closed doors. Maybe we should call them out to face their patients in a conference where we could ask what they do with their time as they certainly aren't doing anything for the thousands of people who need help. If they point to their thyroid cancer work maybe they could explain why they do not have or do not put in place protocols for the NHS whose general surgeons just perform thyroidectomies without any evidence of cancer, which costs in NHS time and patients health.
I don't understand your comment about thyroidectomies performed without evidence of cancer? There are many reasons to perform thyroidectomies without cancer, compression on windpipe and gullett, spreading outside of area, impacting other organs?
When my radical neck dissection was performed, both lobes of my thyroid were removed but the histology report noted that only one had cancer although the cancer had spread up my cervical chain and infultrated the lymphatic nodes. You could say here that there was no evidence of cancer in one lobe but hashimotos was evident and it was removed anyway...
I think the protocol is to remove thyroid entirely if cancer is present, even if it is in only one lobe, and any thyroglobulin uptake thereafter indicates cancerous thyroid cells somewhere in the body, not necessarily in the thyroid bed.
My hemilobectomy was to relieve compression on wind pipe. FNA was inconclusive. Histology was positive. Completion thyroidectomy was performed 3 months later. Histology benign. I had RAI even though uptake for Hurthle cell isn't very good. I also had Hashi's and often remind myself of this when I bemoan the loss of a healthy lobe, which wasn't actually doing its job anyway.
Thank you clutter, I had read the RCP protocols. To he honest with you I am relieved that all my thyroid was removed in the first place because the other lobe would have been removed eventually. What upset me was that I understand the surgeon removed the wrong sternocleidomastoid muscle,jugular vein and spinal accessory nerve. Therefore I needed major doses of RAI. I have required 9 further ops..not sure if I will get to the bottom of it as it was so many years ago....fna have continued and so the story goes on. I hope you continue to do well...
I had a general surgeon who decided I needed a thyroidectomy because he thought I had thyroid cancer although I had no compression of windpipe or gullet or any impact on other organs. My guess was the thyroid was enlarged (although not noticeably and no symptoms of compression) because after five years of hypothyroid symptoms and diagnosis but blood tests that showed nothing the thyroid was working too hard. I had a general surgeon and an ENT surgeon ( who did not examine me until I was on the operating table) so two surgeons, four hours and other patients cancelled before they sent me to a physician who would look at my thyroid levels. I went from 8 1/2 stones to 12 1/2 stones in five years. That should have given them a clue.
So I reckon it must have cost the NHS about £10000 to treat me and after all that I still feel crap. Begs the question maybe the TSH and T4 are not a good enough measure for us.
Florence, it sounds like you had Hashimoto's. Bloods are often normal while it's wreaking it's havoc. Didn't they do an FNA prior to diagnosing cancer?
Have you tried T3 in addition to T4, or T3 on it's own or NDT? Five years of feeling crap is more than long enough to have given T4 a chance.
Hi Clutter, they did do a FNA but did the scan at a different time, the FNA showed nothing while scan showed swellings. Bloods show no Hashimotos, although I thought that was the problem and later self diagnosed Sjogrens which is another auto-immune condition. Asked my doctor to test for sjogrens and he agreed after telling me my dry mouth and eyes were due to getting older ! He was impressed when the tests showed I was right. I had five years feeling crap before thyroidectomy and fifteen years since feeling no better, but then they are medicating me to the level I had when I had the thyroidectomy, cos that is in the range. Did no-one tell these people about statistical outliers. Have spent thousands of pounds seeing different Private Doctors. Most recently last year £200 for a consultation and then £850 of blood tests which I am sure had already been done, then another £150 for him to tell me this. Then in desperation went back to the internet and found THyroid Patient Advocacy and went to Birmingham Conference so hopefully there is light at the end of the tunnel.
So now you see why I was so bitter with the BTA, who sit in their fancy offices telling us we are fine, while actually we are in misery, probably alone and surviving but not living for decades.
Yes, I understand and you have every right to feel bitter. I feel bitter about the 18 months I was almost bedridden because of T4. It's the information and support from sites like this that enabled me to make the decision to take my health into my own hands as the endocrinologists weren't helping me. Having sorted myself out they're now supporting me but I should have had the support much sooner.
I have a positive story they can use. I saw an endo, decided he was never going to get me better, so I decided to DIY rather than die and I am fine :-).
I think you will find that they will only do stories that are positive from start of treatment to end.I think you will find you can put your story on their site ,but they only accept happy ones.
Unfortunately the bta and the other bunch of clowns the btf have managed to put their thoughts on paper which have been more or less accepted as guidelines. Sheila from Tpauk wrote a very long winded rebuttal of their guidelines, in which she provided references to properly researched papers, only to be told that the Bta et al were not prepared to discuss it. The two organisations have fewer thyroid members than this forum has, yet they claim to represent all thyroid patients.
Its all very odd and makes no sense.
My thoughts are that we need to keep our heads down, get ourselves better and just be seen to ignore the bta and btf. Railing against them openly doesn't work and wastes energy.
I agree. That's my philosophy and approach. Help, inform and empower individual patients is the way forward. Simply make those organisations redundant.
What about the poor sufferers that have not found healthunlocked and the TPA?. I am also a success story to date but ONLY through these forums but I have children that are likely to face the same battles that I had so I am very much in this for the long haul. I understand about the energy levels and we have fought such individual battles but I will make sure I take every opportunity to belittle the BTA for their colluded mistruths..
The BTA and the Society for Endocrinology are both running scared. Every publication they produce is defensive and full of scare tactics. It isn't a good way for, allegedly, learned bodies to behave.
Even Dr Wass, on his programme on hormones a few nights ago, clearly said that new hormones are being discovered. It follows then that there are imbalances and nuances to endocrine treatment that none of us yet know about.
The question is - why do these learned bodies ignore their own patients. Logic (a commodity they clearly don't have) would tell me that they should embrace our concerns, encourage diagnosis of endocrine disorders and encourage the opportunity to try different treatments. Surely an increase in the number of patients diagnosed and the number of patients successfully treatment would results in increased kudos for them plus (more importantly) increased funding opportunities.
I can think of no other organisation that denies the existence of a large number of potential users. What do the BTA and SoE think the function of their members is? (Answers on a postcard, please)
Edit: Just looked at their website. Clearly some funding would be a good plan. It's at least 7 years old and looks like it. I guess maintaining their site and giving up to date info isn't an issue that they care about. (perhaps I should offer to redesign it for them!!!)
The BTA and SoE are there for the benefit of their members, medical professionals, not patients, and it shows! The people running the site are dinosaurs who still think of themselves as medical Gods and think patients should do as God tells them. Failure to thrive is the patients' fault and means they have not been compliant with their treatment/medication.
Its the old 'pots' and 'pee in'... little, if any, accountability, even when they 'kill' - no way to make complaints against them [GMC seems to be more for hounding those who get people well; obviously it has its place BUT...] - these places seem comparable to "The Banksters". Very sad state of affairs
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