We all need to get behind the ignorance of thyroid disease individually!!!

[Flecmac]

I have written to NICE and CEO of Nottm University hospitals, I intend to write to my MP too. We all need to do this countrywide if anyone is going to listen!!! PLEASE do this, even if you are now well. Tell them how hard or even impossible it is to get diagnosed and treated correctly and the awful attitudes of these people, it’s just not good enough!!! We can’t allow this to continue, otherwise future generations are going to suffer the same!!!! Many thanks everyone.

[marigold22]

Very sadly (& I'm very sad today), many of us on this forum did all that in the spring/summer of 2017, and earlier. We tried extremely hard to change things when Liothyronine was being de-prescribed. It was then that a group from this forum started the petition & there's still under 30,000 signatures. Thank you for continuing this fight; many of us though sadly have run out of steam - me being one of them.

[Flecmac in reply to marigold22]

I totally understand!!! And well done all of you! But the bully I saw last week cannot keep treating people like this and there are lots more. It’s not just about Liothyronine although that’s very important, it’s the whole system we need to complain about and all the many different stories that are heartbreaking. It’s such an injustice!!! It’s the total ignorance and lack of knowledge now that lets us all down.

[Marz in reply to Flecmac]

Sadly it is in many disciplines - I was diagnosed with Crohns back in 1973 and saw Gastroenterologists every six months until I moved here to Crete on retiring in 2004. Not once did anyone check or tell me about B12. I do not have a Terminal Ileum - and have not had one since that time. B12 is metabolised in that area of the gut. The consequences I kept blaming on so many other things in my body - I am left with horrid nerve damage after spinal surgery that could possibly have been avoided had I had B12 jabs for the last 40 years. I now take care of myself and have them weekly - some damage has been repaired ....

All they did was weigh me .... and try to prescribe me nasties ....

[Flecmac in reply to Marz]

Sorry to hear that. It is indeed across the board, There is so much money wasted in NHS, but when it comes to helping people, there isn’t any. I am so disgusted that I am now stuck and I was told that if my bloods are the same endo will tell my doc to stop the 25 mcg levo that I have only just persuaded her to reinstate. She told me that she did not agree and would not be responsible for what may happen to me and she won’t increase unless endo says so. I am so worried about my appointment next week I just don’t know what may happen. I hope that you are OK, take care.

[Marz in reply to Flecmac]

Do you think it possible you could self-medicate with the help of all of us here ? You could say to your GP you will take this route and see if it focuses his/her mind. Many of us do take care of ourselves on this forum.

[Flecmac in reply to Marz]

If I had an endless amount of money I would but sadly at the age of 60 I have no income and no pension, just rely on husbands pension for both of us. I have been doing it myself for at least 10 years following others with no success and at a massive cost. I only have the time and money for something that works for definite, and that doesn’t seem likely. We are in a bad place health wise, husband diagnosed with prostate cancer and I’m seeing thoracic surgeon Wed as mass found on spine, lung nodule, bulging disc to name a few, so it could be serious and may require surgery, which means I need the best health to cope with it all ASAP. Money is vital but we would run out before I had a solution I fear! I also don’t like ordering from abroad, especially as I would not know how I would respond. I struggle with tablets, choking all the time, so I use expensive sprays for vitamins now and I react to lots of meds and food etc. So as you can see I am a very complex case. Thank you for responding, I do hope that you are feeling better, bless you.

[Marz in reply to Flecmac]

Oh dear I am so sorry it is all a struggle for you both. I really hope all goes well for you on Wednesday .... I wish there was more we could all do to help

[marigold22 in reply to Flecmac]

Have re-read your blood results, you have Hashimoto's Thyroiditis, an autoimmune illness, which means you have inflammation from the raised antibody(ies). Some of us have watched the 8 part series Broken Brain (ended last week I think), which was various Functional Medicine doctors (from US mainly, one from UK - Dr Rangan Chatterjee). From that series I learned that inflammation in the body means it has frequently moved up to the brain as well. They have now realised that the gut is the home of the majority of the immune system; and the body, gut & brain are definitely all interlinked. (I guess it's obvious really!)

We are obviously all different & our health journeys are different. I only discovered in January 2017 that I have raised thyroid antibody (thyroglobuin) via a private blood test. Having not fully recovered myself after 36 years despite increasing my T3 med myself, in the autumn 2017 I started on the Paleo Diet (caveman diet). Now though in sheer desperation I have taken my diet right back to basics. It's the AIP Diet (Autoimmune Paleo Diet)

aiplifestyle.com/what-is-au...

We are definitely what we eat, & I've admitted to myself that I have to give my body a rest & chance to heal; plus to discover my negative reactions regarding foods. One lady here said it turned out she was allergic to tap water, cow dairy & ?something else she had been eating every day. Taking my diet right back to basics isn't costing me anything extra. Apologies, can't remember if you take T4, T3 or a mix of T4/T3 - I'm financially struggling & have managed to buy myT3 online successfully; it's my lifeline. Good luck x

[marigold22 in reply to marigold22]

thyroidpharmacist.com/artic...

A better website explaining the AIP diet - from Izabella Wentz.

[SeasideSusie Remembering in reply to marigold22]

((( marigold22 ))) I'm sorry you are very sad today. I hope tomorrow is a better day for you.

[marigold22 in reply to SeasideSusie]

Thank you SeasideSusie. Chronic illness over 36 years = struggling financially x

[Marz in reply to marigold22]

Lets hope Spring is around the corner - we will all feel stronger when the sap begins to rise .... 😴