Moan of the Day

[EdithWales]

Those who have read my post about the tale of woe about my undiagnosed hypothyroidism would be pleased to hear my feisty self has returned and I am cooking on gas as we say in Wales. Until today when the pharmacist from the Doc Shop rang to say that my TSH was 0.I and T4 22.9, I was to reduce the dose immediately to 100mgs I was flabbergasted as I feel well, him in doors politely asked if we should be treating the patient rather than the lab results ( sounds familiar? ) but she was adamant. I spoke to another friend who is a recently retired Consultant and she said the same. This person was using a flow chart and there is no room for flexibility. Fortunately I am seeing the Cardiologist tomorrow and I will also make an appointment see the Endocrinologist who is familiar with my GCA/PMR

I find this telephone medicine very frustrating, not just for a bossy boots like me but for those who don’t know or who are too ill to navigate the system.

Thank goodness we have each other.

🥂

[DorsetLady PMRGCAuk volunteer]

This person was using a flow chart and there is no room for flexibility.

Now that also sounds familiar more’s the pity .. 🤔

[PMRpro Ambassador]

Especially if it is a pharmacist who sees it at one level I suspect! Sounds as if you probably are on a smidgeon too much but probably not THAT much too much ...

[EdithWales in reply to PMRpro]

I am sure you are right. I am going to make an appointment to see the Endocrinologist, I will get more sense out of him 🥂

[SheffieldJane]

You are taking all the right actions. I have also experienced extreme caution in prescribing Levothyroxine at the expense of my well being.

[EdithWales in reply to SheffieldJane]

Thank you Jane. It makes absolutely no sense, an A level biology student could have diagnosed I was hypothyroid and I am now symptom free on the higher dose if I reduce it as the pharmacist is instructing I will not beable to get out of bed.

I will get further advice.

🥂

[PMRpro Ambassador in reply to EdithWales]

I'd definitely prefer to be slightly hyper than hypo. There are experienced docs who look after ME patients who treat them as being hypo and keep them slighter hyper - improves their QOL no end. And the rest of autoimmune fatigue is probably the same.

[EdithWales in reply to PMRpro]

Saw the Cardiologist today who was as perplexed about the Thyroid, he said he would take advice from someone who knows what they are talking about, I have left a message asking for an appointment from the Endocrinologist, he has my GCA/PMR history anyway.

With regard to the AF, he wants me to have an ECHO on Friday but you are right I have to have the rat poison (Rivaroxaban) it’s that or risk a stroke. He did actually give me a choice but what’s left of the last of my common sense knows I just have to get on with it.

🥂

[PMRpro Ambassador in reply to EdithWales]

Nah - warfarin is the rat poison! Not sure about Rivaroxiban, I chose Pradaxa for 2 reasons. Although it is 2x daily, that means it is out of your system a LOT quicker if you need it to be AND there was an antidote even then. There are now antidotes for some of the others, I've had no problems with it. OH did with the one he was on - Apixiban I think. If you are taking any cardiac drugs, don't take them within 2 hours of the anticoagulant - just in case! Not a good look when the blood level rises too far over time!

[EdithWales in reply to PMRpro]

Thank you. I had a choice and him in doors has Riveroxiban so I settled for that. I was told it was once a day but not it should be taken with the main meal

I am still in partial denial, been ploughing my way through the posts on the AF forum and had better read the drug literature.

Pharmacist woman said no alcohol, Dr ❤️said I could in moderation, I had done that anyway. Another thing to add to my misery. I will have to find another Emogi

🥣 (nice bowl of porridge ) !

[PMRpro Ambassador in reply to EdithWales]

Pfft - unless there is something special about Riveroxaban, the odd glass of prosecco won't hurt. The lady needs to swot up on the NHS line ...

nhs.uk/medicines/rivaroxaba....

"Drinking heavily, especially binge drinking lots of alcohol in one go, is dangerous while taking rivaroxaban. The alcohol can increase the risk of bleeding."

StJoes

stjoes.ca/patients-visitors...

says "It is best not to drink a lot while taking this medication. If you choose to drink alcohol, do not drink more than 2 standard drinks a day,"

Somehow, I don't envisage you getting blotto

[EdithWales in reply to PMRpro]

Thank you. I do know and I have only had 3 glasses of wine since the beginning of May, I can do it.

Endocrinologist just rang me offering another Zoom and I said I wanted to see the whites of his eyes. He said the TSH could be contributing to the AF so it has to be brought down, I am to alternate between 100 and 125 daily and see him in 6 weeks. He also said I can check my own blood using a Monitor my Health service which uses a finger tip prick

Better do as he says

Sorry you don’t like my bowl of porridge

🥕

[PMRpro Ambassador in reply to EdithWales]

I prefer your prosecco glasses ...

[EdithWales in reply to PMRpro]

ok You win 🥂

[EdithWales in reply to EdithWales]

Follow up

Saw Dr ❤️ sent me a copy of the letter to my GP. He described me as “ well preserved physically and mentally “

Not how I would describe this gorgeous glamorous babe, it’s the 🥂that’s done it.

Pickled onions last longer than fresh ❤️🥂

[DorsetLady PMRGCAuk volunteer in reply to EdithWales]

Alcohol always been used to preserve! … and you’ve obviously achieved the concentration sweet spot 😊

[Body_bonkers]

Blood tests have limited use in managing thyroid. I know what dose feels right for me and tell the GP’s accordingly - encourage you to do the same !

[EdithWales in reply to Body_bonkers]

Thank you. My problem is I don’t speak to doctors only Pharmacists who have given me totally diverse instructions. My daughter had thyroid cancer 20 years ago and was told by her surgeon to never let anyone other than him change her dose and he prescribed what he thought what the patient needed. All I know is if I listened to the last woman to go down to 100 I wouldn’t bet out of bed. Still waiting for the Endocrinologist to come back to me and until then I am sticking where I am. I have enough to contend with my newly diagnosed AF, don’t like it, I know where I am with GCA/PMR

Will let you know how I get on

🥂

[PMRpro Ambassador in reply to EdithWales]

Trouble is, the knowledge is of theory rather than practice. Even GPs struggle with that ...

[EdithWales in reply to PMRpro]

I know. It doesn’t help though 🥂