Anyone had this problem?

[Mrsvemb]

I don’t post very much but read the updates every day. I am currently on Rivaroxaban, having previously been on Apixaban and Dabigatran. All three cause hair loss and it is getting worse. I have seen my cardiologist twice in the last few weeks with a view to changing my medication. It is worth trying Edoxaban as a last resort. I see him privately.

He has written to my GP asking him to facilitate the change. For some reason my GP has referred me to the anti-coagulation clinic. Never been there before and don’t intend going now. They have just called me and say I have to go for a blood test and then an appointment at the clinic.

I have regular blood tests, which include liver and kidney function etc, which I always provide a copy of results to my GP.

The anti coagulation clinic is at a hospital where it is impossible to park. I live in a village and there is no bus service to the hospital. The only way I can get there is by taxi, which costs me £20 each way.

I don’t understand why my GP can’t prescribe as he always has done with the other three anti-coagulants. He could send me for a blood test if he needs one. Usually, I give him a copy of my results done by my oncologist.

This has made me very angry. I have always tried to save the NHS money by passing on my blood results done privately. Not any more. I am Mrs Angry 😤. Rant over.

Val

[CDreamer]

It’s very frustrating when there is no joined up ness, makes me mad as well!

Surely the anti-coag clinic is only for Warfarin & INR testing? Think I would go back to GP & enquire what on earth is going on?

My GP does all my bloods - as they should if you are on NOACs.

Let us know how you get on.

[Mrsvemb in reply to CDreamer]

Thanks for your reply. Good to know that I am not alone on my thinking. I queried this being only for Warfarin and INR, but was told that they see patients on the new anti-coagulants as well. They apparently monitor liver and kidney function. I even told her that I am having my bloods done at the private hospital this week and can send them a copy of the results but she is still saying that I need to attend the clinic. What a waste of resources. I am trying to get an appointment with my GP.

[CDreamer in reply to Mrsvemb]

I despair......it was discussed at Patient Day - just how much money was wasted through this ridiculousness & how there is absolutely no excuse for this in the days of high tech communications! You are not alone in your thinking!

[Hidden in reply to Mrsvemb]

I'm certainly no expert but I do think you'll find they might just want to test kidney and liver function in isolation, not as part of a package of other blood tests.

Are you not able to tolerate/ cope with Warfarin ?

I do all my own testing at home on my own device and on the test dates just ring the INR results through to my INR Clinic. They then give me my new dose, and my next test date.

[Mrsvemb in reply to Hidden]

Thanks for your reply. I refused Warfarin at the outset, because I don’t want the dietary restrictions. I am intolerant to gluten and that is enough to cope with.

Val

[CDreamer in reply to Mrsvemb]

But why can’t your GP do your kidney/liver function tests if you are on NOACs. Agree re Warfarin.

[Mrsvemb in reply to CDreamer]

That will be my question to him. The surgery gets away with funding my blood tests because I always give them a copy of the ones I have done privately for my oncologist which 8nclude both liver and kidney function. Last done in June. Stupid thing is I am having my bloods done this week and could get a hard copy for this stupid clinic, but I am not travelling to the anti-coagulation clinic anyway.

[Hidden in reply to Mrsvemb]

Hi Val,

To be honest, and I understand what you are saying ( and CD too) about Warfarin but, I have made very few concessions to Warfarin .... ever, probably greens, that's it. I have made no concessions either re alcohol ( but maybe that's nothing to boast about ). I have made more concessions to food and diet as a means of dealing with my AF ( see my recent comments to LouBrig) rather than as a concession to Warfarin. I self test my INR levels at home ( or wherever I go in the world) and I'm fine. Even my gluten free diet ( and free from other stuff too) has no impact on my Warfarin and INR ......... but maybe I'm just a different exhibit of this AF induced almighty freak show.

John

[Kaz747]

I’ve been on all three too and am it seems Rivaroxiban is the best for me because of side effects with the others. My hair was falling out for a few months but is good now. I spoke to my trusted pharmacist and medical herbalist who recommended a particular multivitamin and said he the anticoagulant my be a contributor but he believed it was primarily a stress response to all the physical pressure my body had been under (at that stage I’d had a number of procedures, tests, complications, drugs and five anaesthetics in 13 months).

[Mrsvemb in reply to Kaz747]

Rivaroxaban has been the best for me too apart from the hair loss. The other two caused really bad nausea as well as the hair loss. I guess Rivaroxaban is lesser of the evils. I just thought that it was worth trying Edoxaban, but I won’t be jumping through hoops to get it.

[Kaz747 in reply to Mrsvemb]

Edoxaban isn’t an option for me as it’s not available in Australia.

[wilsond]

Very frustrating for you! I'd try GP again and ask for an explanation. I have had thinning hair , I'm on apixaban ,but it seems to have settled down now. I wonder if other factors might be at play,are you stressed or anxious about anything? Other medications that may be interacting?

I take a supplement called Biotin from a health store,and my hair and especially my nails have really improved. ( My nails were terribly flaky and brittle,even toe nails!)

Might be worth a try. No contraindications with medicines noted.

Good luck,let us know how you do xx

[Mrsvemb]

Thanks to all for your useful comments. It has helped to know that I am not alone. I was very angry yesterday and needed to vent my anger.

I intend going back to my GP though it may take a couple of weeks to get a routine appointment.

[Cally53]

My GP regularly test my bloods. The local hospital anti coagulation team then access my records to check it has been done. I get a letter from them annually which has a questionnaire attached and blood results. If it was noted that I hadn't had a blood test they would include a blood form and ask me to arrange one at my surgery as soon as possible. Seems a simple system to me and I can't understand why it would not be done like that everywhere! I have never been asked to go to the anti coagulation clinic.

[Mrsvemb]

OK it’s a bit clearer now. It was not my own GP who made the referral to the anti-coagulation clinic. He is on extended leave returning on 20th November. I have never met the doctor who made the referral, she knows nothing about me and my situation. I have a telephone consultation with her next week. If I don’t get any joy from her, I will wait for my doctor to return. It’s not as if I am without anti-coagulation.

Man6 thanks to you all for your support.

Val😄