Polycythaemia Vera & Dental Care

[CarolineL]

Hi all,

I just wondered if anyone living with Polycythaemia vera (PV) had had any dental issues?

About 6 months before my Polycythaemia vera (PV) diagnosis (18 months ago now) when I was having symptoms but not officially diagnosed, my dentist suggested I might have periodontitis (gum disease) and suggested a full teeth clean. When I next went back after this clean I had then been diagnosed with Polycythaemia vera (PV) and so explained that both the condition and the medication I was on (aspirin at the time but now Apixaban) caused bleeding gums but my dentist still insisted that what she was seeing was gum disease and that now we couldn’t reverse it but only maintain it.

I went for another appointment last Friday and my dentist advised that it was worsening and that I should go and see a specialist as this was unusual for my age (48). She asked if my condition caused any dental issues and I advised again that all I knew that it did cause was bleeding gums as did my medication but she seemed to just dismiss this.

I have done a lot of research on gum disease inbetween appointments and apart from bleeding gums I have no symptoms of gum disease at all. When I look at images of “healthy gums” online my gums look near enough identical. Since having teeth I have always brushed my teeth at least twice a day, often 3 times, used mouthwash as well in adulthood, and over the last year have also been using a water flosser daily. I also don’t have a single filling and grew up in the south of England where flouride was added to the water whilst I was growing up and well before this was standard. I don’t seem to be a typical candidate for gum disease and I therefore feel that it is more likely that any symptoms the dentist is seeing (which incidentally she never discloses) seem more Polycythaemia vera (PV) related than dental related. I have also looked at dental studies online and whilst most are simply on managing potential excess bleeding during any procedures one did state “Polycythaemia may initially present with: spontaneous bleeding from the gum, purplish or red areas on the tongue, cheeks, lips and gums, poor oral hygiene, including inflamed gingiva, periodontal disease.” so I am wondering if I have effectively been misdiagnosed?

I appreciate that Polycythaemia vera (PV) is rare and consequently my dentist has never heard of my condition and knows nothing about it, like many non-specialist medical staff, so when she sees bleeding gums the logical conclusion would be that she is seeing gum disease. However, the cynical side of me is also well aware that any procedure or referral she recommends involves a hefty fee so there is a monetary motivation there too!

I am now considering a second opinion or at least switching dentists to someone who will actually listen to what I’m saying about my condition and medication. I just wondered if anyone else had similar experiences or dental issues due to Polycythaemia vera (PV) because as normal there doesn’t seem to be information widely available surrounding this!

Many thanks in advance.

[clickinhistory]

@CarolineL when I was seeing the specialist for the first time, he asked if I was suffering from a small list of symptoms, bleeding gums being one of them.
I know my teeth are not the best, years of working in pubs and clubs before the smoking ban, parents who smoked, but never smoked myself, spent a small fortune on dental products and various toothpastes, nothing changed after the bleeding started.
Specialists, be they docs, dentists, tend to see only what they see through the lens of their training, that is why Polycythaemia vera (PV) gets missed in the early years of symptoms, docs are not looking for it, just the normal reasons why these symptoms appear.
I would suggest taking in some material to the dentists to show them, even Macmillan have it listed as a symptom. It seems to be linked to the thickness of the blood and platelet counts.
Good luck with the dentists re-education

[CarolineL]

Thank you for this.

Yes, it is very frustrating that no-one knows anything about the condition nor indeed on how it presents itself! What’s more frustrating at present is that I am telling my dentist these things and she isn’t listening at all and simply tunnel visioned on her original diagnosis. It will now cost me £150 for a private hour long consultation to actually get to the bottom of it. It’s almost worth it to get a second opinion and either get my dentist told once and for all from a peer or, worse case scenario, start getting pro-active treatment.

My instinct though is that this is all Polycythaemia vera (PV) related as I have good oral hygiene and only one symptom of gum disease which is a listed symptom of both Polycythaemia vera (PV) and Apixaban. This and the fact that nothing was ever mentioned by any other dentist I’ve had in all these years, that there were only signs of any gum issues just before my Polycythaemia vera (PV) diagnosis (and of course now that I have been diagnosed), leads me to believe that I have been misdiagnosed by my dentist and that what she is seeing is simply Polycythaemia vera (PV) symptoms, particularly as she has never mentioned anything other than bleeding gums.

[Erica]

Hi @CarolineL I will copy your post to the Blood Cancer UK nurse advisors, just in case they can help at all @BloodCancerUK_Nurses
I hate anything to do with my teeth, look after yourself

[Duncan]

Oh @CarolineL, this sounds horrible. I’m sorry to read you’re experiencing the dreaded bleeding gums. I agree, it sounds like it’s not due to how you’ve looked after your teeth and gums. I’d say your dentist should be giving you awards for looking after them so well!

I had a truly terrible orthodontist in my teens who messed my teeth up so badly that I struggled to go to dentists for years afterwards as I assumed it would always worsen my teeth. Now I am a living stereotype of ‘bad British teeth’ through no fault of my own! Kind of amazed I haven’t had bleeding gums, to be honest.

Definitely seek someone who really should know better. I mean, dentists have a rather small area of expertise, whereas haematologists should know more about a wider range of bodily functions. I’d be more likely to trust a haematologist about blood issues than a dentist. Pity you even have to think about getting a second opinion though, and at great expense to yourself. That dentist really should take your Polycythaemia vera (PV) diagnosis more seriously.

Just a thought, but do you have an A&E dentist at a local hospital you could attend during the week sometime should your gums be doing their thing? Might be a chance to see an emergency dentist who could check this stuff with haematologists there and then in-hospital.

And on a personal vegan note, I wonder if you could recommend any moisturisers with SPF? I use plain argan oil as my daily moisturiser but want to change to one with some kind of SPF and thought you might know some good ones. I currently use Baby Bum Mineral SPF 50 Sunscreen Lotion but would rather not have to apply multiple lotions every morning as there’s only so much time in the day! No worries if none come to mind.

Let us know what happens with your predicament!

[PollyVera]

@CarolineL - hi Caroline, this really piqued my interest. I suffered from bleeding gums for a long time, in part due to over zealous cleaning with hard brushes over the years and bad luck, so I believed. I too, have good oral hygiene.

However, I see a top periodontal professional, who had encouraged me to see my GP because my gums were, before my Polycythaemia vera (PV) diagnosis, almost scarlet and when I had my 3-monthly hygienist appointment my gums bled quite a lot.

When I was diagnosed with Polycythaemia vera (PV), I emailed her just to say thank you for being alert, and she asked whether I had primary or secondary Polycythaemia vera (PV), so it’s encouraging to know that some medical professionals have an awareness. Since having venesections to reduce my haematocrit, my gums have become a beautiful pink gum colour and the bleeding has all but subsided. The periodontist asked if she could use me as part of her training programme to alert her students and peers to the condition.

Apologies for the chapter and verse

[CarolineL]

Thank you Erica - it would be really helpful to have some professional input on top of online research.

[CarolineL]

Thanks Duncan and nice to hear from you.

It sounds worse than it is as when I say bleeding gums it’s just very light bleeding on a tooth here and there every now and again and a pinkish tinge on the toothbrush when I brush my teeth. Certainly not any horror scenes! I have noticed it tends to get worse when I’m a bit stressed or anxious, and likely when I’m nearing my threshold/a venesection. I say likely because my last venesection was July 2023 so I’m struggling to remember but my last count in February was 0.44 so I can’t be far off another one, hence why my dentist may think my symptoms are worsening!

I hear you with dentists! I too had 3 years of orthodontists and braces and I was so sick of dentistry by the time my braces came off I did avoid them a little after! Then came uni, then a permanent move to Manchester, and then life got in the way and before I knew it almost 25 years had passed! In saying that, when I went to the dentist again all I needed was a a quick clean so my dental hygiene can’t be that bad!

With regards to moisturisers I think most of the ones I use would probably be UK only, but I do think Elizabeth Day of all people recommended a moisturiser on her newsletter a few weeks ago which I think is available in the US, is vegan, which has a decent SPF and which she was raving about. I think I made a note of it so let me check and get back to you, otherwise I can certainly ask on the vegan beauty page I follow and see if anyone has good recommendations. Leave it with me!

[CarolineL]

Hi PollyVera - this is really interesting and thank you for sharing.

My gums weren’t bleeding until about 12 months before my diagnosis which seems to have been an early symptom. It’s only very light, occassional bleeding and doesn’t seem related in any way to oral hygiene. Like you my gums are a healthy pink apart from on the odd tooth at the moment where it’s a teeny bit darker but as I said to Duncan above I am almost at my threshold now so I suspect my HCT is building up again hence suspected symptoms appearing worse.

How lucky you have such a great dentist who encouraged to seek medical advice and at least some dentists seem to have some awareness outside of their relatively small scope! I only wish I had a dentist who would actually listen to what I’m telling them rather than simply dismiss what I’m saying or at least do their own research on Polycythaemia vera (PV).

I think at this stage my only option is to pay the £150 and see the specialist. I have explained my situation and concerns to the staff at their dental practice and they have made notes of my condition and medication and the fact that both cause bleeding gums. The fee is for an hour consultation which gives me a chance to really discuss the matter and get some answers as opposed to the normal 5-10 minutes my dentist deigns to give me.

In any case I’ll be looking ar other dental practices and hoping to transfer to a dentist who is a little more understanding of Polycythaemia vera (PV).

[Duncan]

Oh that’s a relief! I hate thinking anyone here has to tolerate the worst side effects of our MPNs, so I’m glad the bleeding isn’t a total horror scene!!! Sorry to hear you too had terrible dentistry! Wow it’s almost a rarity to hear of good ones, like @PollyVera!

Glad too that you’ve not needed phlebotomy for so long, one less thing to deal with hey?! Long may that last.

Thank you for your moisturiser tips, I really do appreciate it. They all seem to have honey in them over here, or other random ingredients that seem unnecessary, like overbearing fragrances. I’m past caring about my wrinkles but I would like to avoid the dry skin that seems to be a byproduct of my Polycythaemia vera (PV) no matter how much I hydrate.

Thanks @CarolineL, hope you find some answers to your concerns.

[Liz59]

Duncan I use MooGoo for my skin its an Australian brand all natural, not tested on animals. If you want to have a look and see if its of use to you.

[Duncan]

Aw @Liz59, thank you so much! Hadn’t heard of MooGoo so I’ll have a look

[Norwich]

Loud you get your haemo to refer you into the hospital dental service? They might be better placed to give you that second opinion that you need. It would be free.

[CarolineL]

I’m certainly going to ask at my next appointment - thank you.

[CarolineL]

Hi Duncan - My helpful vegan beauty page has recommended Medik8. It’s a moisturiser and unusually for a moisturiser is SPF50+ which I’m sure would be very useful in US weather and with your medication. It’s also certified by The Vegan Society! I’ll post the link further down but I have been assured that this is available in the US although can also be shipped out.

Advanced Day Ultimate Protect™

[Duncan]

Thank you so much, @CarolineL, Medik8 looks great, and just what I was after. I did some research and found another promising SPF 30 moisturiser made by a brand I like, Andalou, that my local health food shop sells. Reviews to follow…

[CarolineL]

Hi all,

I just wanted to give you all an update on the dental situation.

I asked about bleeding gums at my last haematology appointment in June and the Doctor confirmed that the blood thinners I’m on could cause this but also suggested taking a Vitamin C tablet a day as this can help. They also said that my iron levels were very low and that this could be a contributing factor so to eat lots of legumes, leafy veg etc. which I do anyway as I am vegan.

I immediately started taking Vitamin C supplements and did notice that the bleeding reduced slightly. In the meantime I went to another dentist appointment where she stated that my gum disease was “getting worse” and that it shouldn’t be at this level for my age (48). She was again pushing me to go to the periodontist which would cost £150 for an hour appointment. Despite me explaining what the haematologist had stated and reiterating that Polycythaemia vera (PV), Apixaban and iron deficiency all caused bleeding gums she was again very dismissive and simply referred me to go to the periodontist who then proceeded to call me at least once a week to make an appointment.

I battled with going for the periodontist appointment as I was reticent to spend £150 unnecessarily as I still felt that with my good oral hygiene, which I am fastidious about, this was all symptomatic of my condition and medication as I had not had any of these issues until just before diagnosis and then since. In the meantime, my husband happened to sign up with a new dental practice who were taking on NHS patients and I registered at the same time and finally received a call last week to go in for an initial check-up.

I had my first appointment with them today and duly completed all the medical history forms and made them aware of the various conditions I had which would cause bleeding gums. I then reiterated this to the dentist upon entering the consultation room. The dentist took x-rays and did a check of my teeth and said that everything looked fine. They acknowledged that there was some bleeding on my gums during the gum check but were satisfied that this was due to the Polycythaemia vera (PV), iron deficiency and medication and not any underlying gum issues. They recommended an appointment with the hygienist for a teeth clean and a chat, but other than that they were happy with everything and said they didn’t need to see me for another 6 months.

I cannot stress how relieved I am. I have had almost 5 months of stressing about my teeth and being concerned that this was yet another issue that I was going to have to deal with on top of the Polycythaemia vera (PV) etc. To have someone now vindicate my own feelings and tell me that there is nothing to worry about and that my teeth and gums are all looking fine and as they should is a huge relief, especially when I take such pains to look after my teeth and always have.

Obviously I will now be leaving my old dental practice and I will also be sending a stern e-mail of complaint stating that despite my making the dentist aware of my conditions and medication that I was summarily dismissed and instead seen as a money making enterprise for them, as I have no doubt that the periodontist appointment would have led to more treatment and costs. They simply didn’t listen to me and had no understanding of my condition, and a complete unwillingness to learn, hence why I wanted a second opinion in the first place as all trust had gone. It was like my dentist was fixated on her diagnosis and nothing I said or presented to her as explanations was going to detract from that opinion. I’m actually very angry as if they are doing this to someone who isn’t as tenacious or who won’t challenge anything like I do then they could be taking money from someone who could ill-afford it for no benefit to their oral health whatsoever.

Anyway, I wanted to update everyone just in case anyone else has these issues. My advice would be to thoroughly explain to your dentist that those with Polycythaemia vera (PV) are more susceptible to bleeding gums and that medication, iron deficiency etc. are all factors as well in causing gums to bleed and this needs to be considered. Also, it is always worth getting a second opinion! I was very fortunate that I was able to get into another dental practice so quickly but even if you have to pay for an appointment then it’s worth it as then at least you will know one way or the other.

Many thanks for listening and for all the advice.

[Duncan]

Hello @CarolineL, thank you for sharing your success with your dental situation! I’m so glad to read that the bleeding reduced after taking vitamin C supplements. Funnily enough, I noticed improvements in my skin after taking a few bursts of vitamin C and other antioxidants recently, really glad it’s helping you too.

I’m so pleased you stood up for yourself, for how good you know your dental hygiene is, and your knowledge about Polycythaemia vera (PV)/Myeloproliferative neoplasms (MPN) in the face of a medical expert who really should know better. Dear me, that dentist does sound so dismissive and dare I say it a bit negligent. You shared your potentially serious, risky blood cancer side effects and they think they know better than your haematologist?! Well, I’m just glad you trusted yourself and found a different dentist!

Well done too for looking after your teeth so well and being told they’re looking fine. Bet you’re glad you stuck your neck out a bit. Enjoy the relief, it reminds me of how I felt after changing haematologist!

I wonder if the previous dentist might do well to listen to their patients better, and act upon the information shared so diligently, like with how you approached them. I’m sure you know there is PALS should you wish to take your issues with them further.

Lovely to hear from you @CarolineL, I hope that pesky Polycythaemia vera (PV) is behaving!

[Erica]

Oh @CarolineL thanks so much for taking the time to write so comprehensively your experiences with your dentists.
I got from it, if in doubt get a second opinion for peace of mind, so, so true.
Look after yourself and please do keep posting,

[CarolineL]

Hi Erica,

That’s absolutely the message to take. Healthcare should be a collaborative process and if you are not happy with any aspect then you have every right to ask for a second opinion or for more information.

The fact that my previous dentist couldn’t cite any gum disease signs other than bleeding gums is why I took the issue further and sought a new dentist. Once the trust had gone from our relationship then I saw little point in continuing with it. My new dentist, who is already far more understanding and actually listens to me, is a breath of fresh air and I am confident that they will give me better overall healthcare as they understand my complications.

Many thanks.