Update on progress : Saw Dr ❤️ following the ECHO... - PMRGCAuk

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Update on progress

EdithWales profile image
26 Replies

Saw Dr ❤️ following the ECHO who said it were no surprises and as I had found AF myself not significant. As I am now anticoagulated he didn’t want to see me again. I told him he wasn’t getting away with that and I would come back in a year. He had written to my GP asking him to liaise with the Endocrinologist and Rheumatologist. So I am happy with that.

I joined the AF forum and it both confused me and frightened me. Similarly the Thyroid Forum, I thought I knew about it but it is immensely complicated and I thought I was reasonably intelligent. What is the worst about them is I could not find the same amount of support and reassurance that I have always got on here. That blend of sound expertise, experience, support and humour has escaped me. So wonderful friends you are stuck with me.

Look after yourselves

🥂

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EdithWales profile image
EdithWales
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26 Replies
EdithWales profile image
EdithWales

I have re read this and it sounds rude and ungrateful which is not what I meant. There is a mountain of helpful advice on other forums and people who give their time selflessly . So apologies if it came out wrong .

However I am in unchartered territory, I have been on thyroxine for 30 years and never had a problem and now it’s gone berserk, the low mood is the worst. The AF is very frightening particularly talk of ablation and I am out of my depth. It am comfortable after 9 years of GCA and now PMR which is virtually symptom free

Maybe I had got too complacent. 🥂

PMRpro profile image
PMRproAmbassador in reply to EdithWales

I was about to post to wonder why a/f is seen as so terrifying. I have had to wait 10 years to be offered ablation and I can't wait for the phone to ring now I'm on the list. I will add that the electrophysiologist said I'm being offered it because I am a reasonably fit and active 70 year old, it isn;t automatic at that age. 60, no question, you get it. 80, also no question, almost certainly not here. I wonder why the difference.

I wasn't scared by the increase in a/f after the Covid bivalent jab - just seriously inconvenienced and pissed off. At least it happened after OH died so didn't affect me caring for him, that would have been awful trying to cope.

What is scary for you? Here to talk about it too - privately if you don't want to talk in public.

EdithWales profile image
EdithWales in reply to PMRpro

Thank you🥂

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to EdithWales

Don't worry, those of us that follow other forums, know what you mean...this is very active compared to some.... and quite "chatty" at times..

And learning about about a new "issue" can be daunting...🌸

EdithWales profile image
EdithWales in reply to DorsetLady

Thank you. I think the thyroid low mood symptoms are effecting me. My get up and go has got up and gone

🥂

Rose54 profile image
Rose54

Hi

You’re not the only one who found the Thyroid site complicated. They do seem to be focused on self treatment with non prescribed medication. To scary for Me .l have been on Levothyroxine like you for over 30 years was on 150 but been on 125 for a long time now.

Good luck with everything.

EdithWales profile image
EdithWales in reply to Rose54

Thank you Rose. I am glad I am not alone

Take care

🥂

SheffieldJane profile image
SheffieldJane in reply to EdithWales

I have been on 125 microgrammes of Thyroxine since 1986 and barely consider it along with my doctors. Just an annual blood test. Low mood is an old friend that shows up periodically and my heart sometimes gives odd little bumps. My low mood is caused by life, pain, fatigue sometimes a taper. A change, even a run out to the countryside can lift it. No woo woo sites for me.

piglette profile image
piglette

Having been on several forums for various things there seem to be an awful lot of people who get muddled with the information they are giving out, in fact the worst seem to be journalists on the media, some of whom seem to make things up to sell their media products.

EdithWales profile image
EdithWales in reply to piglette

Thank you piglet. I am not stupid but both seemed so complicated. I know I am not functioning properly but they weren’t helpful 🥂

piglette profile image
piglette

people seem to have become very aggressive since Covid I have found.

EdithWales profile image
EdithWales in reply to piglette

I agree. All the kindness has gone

🥂

PMRpro profile image
PMRproAmbassador in reply to EdithWales

Lot of hospitality staff here say the same - especially certain nations. Germans always were a bit of the elbow society ...

EdithWales profile image
EdithWales in reply to PMRpro

I think Covid has done huge damage to society 🥂

PMRpro profile image
PMRproAmbassador in reply to EdithWales

Definitely, Especially amongst younger age groups. Us oldies seem to have adapted better - I found it not much different in a lot of ways from my childhood in a very rural area.

Mayadill profile image
Mayadill in reply to EdithWales

I have to say it is a feature of this strange and possibly unique city of Brighton - I poddle around the neighbourhood with my rollator and there are many low white walls, perfect for sitting on. Again and again I only have to pause and some passer-by will say something along the lines of, "You all right there, love?" "Need any help?"

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Mayadill

Not only Brighton -car had a puncture recently -and it’s one that doesn’t have a spare so need to call for assistance!

Whilst I was at side of country road waiting for either son or BR (whoever came first) I lost count of the number of people who stopped as asked if I was okay -cyclists, car drivers & white van men! Was pleasantly surprised tbh… restored my faith in human nature!

Might have begin different if I’d had my Viking chariot 😳

EdithWales profile image
EdithWales in reply to DorsetLady

It’s definitely better face to face, my experience of the “computer says no” is dreadful. I have been waiting 7 months for refunds of my cancelled Dubai holiday, numerous emails, phone calls they just terminated and recorded delivery letters. I need energy to continue to pursue it but I won’t give up🥂

Mayadill profile image
Mayadill in reply to DorsetLady

Oh I don't know. People so often stop for something unusual. Def faith in humanity restored.

piglette profile image
piglette in reply to DorsetLady

It is the banks that take forty five minutes to answer the phone. I tried for nearly an hour the other day and put the phone down in the end as I am charged for the call at exorbitant BT rates if over an hour. Obviously my call was not that important to them!

Bluey-1 profile image
Bluey-1 in reply to piglette

Yep, life admin, having to set aside an hour or so to contact broadband provider which involves going through several ‘press button x’ before you eventually get through to a human. NS & I poor too. I was transferred to another person for verification, cut off and couldn’t get back to the original person. Arrgh!

EdithWales profile image
EdithWales in reply to Bluey-1

it’s not good for the blood pressure! 🥂

Bluey-1 profile image
Bluey-1 in reply to EdithWales

Always notice the stress rates on my smartwatch are significantly raised during such phone communications.

EdithWales profile image
EdithWales in reply to Bluey-1

Evidence it’s not good for you. 🥂

PMRpro profile image
PMRproAmbassador in reply to Bluey-1

I wouldn't mind the press button things - but I am phoning from Italy and they simply don't work. I end up with the wrong person to whom I must explain and request an transfer which almost inevitably puts me back in the circle again, Often some very ripe language - which must be shelved when a person answers or I'd be cut off altogether.

EdithWales profile image
EdithWales in reply to Mayadill

Good to hear🥂

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