HRT and hemangiomas

[alwayswantchocolate]

I started on evorel sequi patches last November. I have 3 hemangiomas in my liver which were discovered incidentally when I had gallstones.

I was worried about using hormones but was assured by my GP that the hormone would be absorbed directly into my blood stream so wasn't a problem with the liver hemangiomas. Anyway, the HRT helped with my joint pain significantly although my cycles are still irregular. Then a couple of weeks ago the joint pain flared up again after being gone since last November and I had a very short cycle too.

I contacted my GP to discuss, and she recommended the coil. I reminded her that I had hemangiomas and had been cautioned against the coil. I off-handedly asked again about the patches affecting the hemangiomas and she said she'd double check (!). I've had a text today from her saying they could have been affected by the patches after all and I've been referred for a liver scan!

I'm feeling all sorts of things. Annoyed mostly, as I specifically asked about this before using the patches and wouldn't have used them if I'd have thought there was a risk. I'm scared of the 'rare thing' and have health anxiety as, rewinding 11 years, it was very unlikely that my mum's headaches would have been caused by a rare brain tumour but then that's what it was and I lost her.

Has anyone else used HRT with hemangiomas and been fine?

Also, has anyone had HRT work for something like joint pain and then had it stop working? My GP said my hormones are like a staircase and I could have taken another step.

I'm doing a big run on Sunday but thinking I should stop the patches after the run (it's changeover day for the patches anyway) until I find out the results of the scan.

Thanks if you got this far!

From a quick google, hemangiomas are harmless and benign growths on the liver. They are not liver disease as such. As you're not being treated for them (online it says they can disappear on their own) it's not an issue, is it?

Were you informed about the the hemangiomas at the time?
Everything online says they are harmless and up to 1 in 20 people can have them (but won't know unless they have a scan for something else.)

britishlivertrust.org.uk/information-and-support/liver-conditions/liver-haemangioma/

HRT is only contraindicated (re liver) if there is active liver disease.

Obviously if you're really worried, ask your GP to follow through and refer you to a menopause specialist.

Your other issue about patches not working...you may well need a higher dose of estrogen as your own estrogen falls.

It's unfortunate that your GP seems unaware of HRT and the liver.
Unless you're feeling ill with liver symptoms, it doesn't seem to be an issue.

Yes I was told they were harmless when they were found but then two years later our county coil fitting service refused to fit a mirena coil became of them.

i was originally told that it was fine to take estrogen through a patch by my gp so went ahead with HRT patches. Now, after much researching, I think she has realised that any increase in estrogen ‘could’ make them start to grow regardless of how it entered my body. Hence the scan referral, to see what’s happened.

Why don't you contact the people above in the link? They might be able to help. They have a nurse-led helpline.

I'd try not to worry.

Thank you, I called them today.

The nurse hadn’t heard of the link between HRT and Hemangiomas but did a bit of a search and found that there could be one. She seemed unconcerned though, said even if they had grown she didnt see it as a big problem in her years as a liver specialist nurse.

She also, off the record, recommended a health anxiety instagrammer who I’m now following, perhaps that will help me navigate my way through the wait for the scan and results.

Hello all, sorry to join in this chat. Can hemangiomas cause elevated liver enzymes? I am having a ultrasound soon, just curious is it related to hormones imbalance. Thanks.

@alwayswantchocolate The fact that you have 3 hemangiomas is a bit different from the more common occurence of 1 hemangioma.

IMHO it could (but not necessarily) mean that you have a certain predisposition, and your own oestrogen could have contributed to their growth (as well as the gallstones).

May I ask if you are in peri or post menopause, because these phases are completely different regarding your own oestrogen levels?

@Juliefaith "There are several subtypes of liver hemangiomas: giant, calcified, flash filling, hyanilized and other types. Only the giant hepatic hemangiomas can cause significant complications."

"Giant liver hemangioma size may be related to the elevation of liver enzymes."

https://pmc.ncbi.nlm.nih.gov/articles/PMC7509359/

I’m 49, in (hopefully late) perimenopause now. I stopped the HRT and it’s been 51 days and counting since my last period (which I had after stopping the HRT) and night sweats and hot flashes have increased. I believe this indicates a fall in oestrogen…

My first scan when they were predominantly looking at my gallbladder showed 3 liver hemangiomas. A scan a couple of years later showed only one larger hemangioma. My GP thought they’d just sized the three together and called it one. The liver specialist nurse I spoke to said it was more likely that two had shrunk and one had grown. That nurse seemed to think it was all no big deal but I should go along to the scan anyway.

My liver scan is on Monday.

I have had slightly elevated liver enzymes (out of range but only a bit) which increased a bit at each blood test, then went back down again. My GP, who is largely clueless, thought that the hemangiomas were causing it.

however the increases also aligned to my increase in marathon training and then decreased after I stopped running stupid distances so I’m more inclined to think mine related to that.

@alwayswantchocolate Thanks for replying. During perimenopause, the wild fluctuations in oestrogen levels can cause all sorts of issues, and maybe liver hemangiomas respond to those fluctuations in a similar way as fibroids in the womb, high levels of oestrogen can increase their growth, and low levels of oestrogen can cause them to shrink.

It's very difficult to manage perimenopause symptoms with or without HRT. If I were in premenopause now, I would stay on the pill to try to override my erratic ovarian function during perimenopause, stop around age 54-55 and hope for the best.

I had a horrible perimenopause, but now I feel much better, 8 years post-menopause. I have tried HRT during peri (Estradot patches and Utrogestan) and my premenoupause nightmares have returned with a vengeance, heavy bleeding and migraines, so I have stopped HRT and haven't looked back.

I have learned to manage hot flushes, other menopause symptoms like joint pain are not as bad as they were, but I suspect this is due to a self-learning process that menopause has triggered in my brain (long story).

I understand that many women want HRT for future bone protection. I have a DEXA scan every year to monitor bone density and despite a slight decrease in the last 2 years, it's still considered normal for my age.

Thanks for your answers. I hate this perimenopause journey, ups and downs with health.

Hi, I know this is an old post but just wondering OP how you are doing now?

I also have a liver hemangioma (just one though) and I am on HRT. GP said it is OK.

However I had a benign tumour (lipoma) grown massively in size (in the bowel) during pregnancy and had to have emergency surgery for it and complcations

So I am a bit worried about this as well. I think mine is around 2cm.

Anyway just wondered how it was going. Maybe I will ask for a liver scan.

Hi, well the scan was fine, showed no change. A hepatologist my GP spoke to said I shouldn’t be on HRT though so I haven’t used it since.

My perimenopause has ramped up another gear though and I contacted my GP about it recently who referred me to a menopause specialist GP so they could advise on alternative treatments.

By weird coincidence that telephone appointment was today and he said there was no reason I can’t take HRT and he wanted me to have a liver function test and if that was ok to go back on it! I’m not happy at all with all the conflicting information and had hoped for another option as I don’t want to take the HRT
after what the hepatologist said.

Sorry you’re going through something similar.

Thanks for replying. OK so yes it is similar here, I queried it with the GP who said it was Ok but I am a bit concerned, however I am not that keen on stopping HRT either.

I do have some healthcare with benenden health however they already covered the scans for the liver (ultrasound and MRI) to diagnose the hemangioma and because they also found a kidney problem it covered a kidney specialist but not for the liver

I don't think you can claim for the same problem again, (just how it works) so I might need to ask for a scan on the NHS, and I remember when it was diagnosed they said it didn't require follow up.

I wonder if I am being over anxious (I get quite anxious since the colon lipoma nightmare) and I guess as these are there since birth it has not grown hugely during my two pregnancies, but then there seems to be mixed messages online and with the consultants.

I'm also getting quite heavy periods on the HRT (or withdrawal bleeds as they call them) so maybe stopping would help that.

It's tricky to know what to do. I feel a bit funny going back to the GP after they have already told me it was OK to take it. However GPs are generalists.

I don't really understand why they want you to have a liver function test, I wouldn't have thought the hemangioma would cause problems there.

I feel more inclined to go with what the liver specialist thought given they would know more about the liver, but am no expert.

What size are yours? mine is a single one around 2cm.

I found this quite useful, it concludes that In summary, endogenous and exogenous female sex hormones seem to play a role in the pathogenesis of liver haemangiomas although significant enlargement occurs in only a minority of patients. None of our patients developed symptoms or complications related to the presence of these haemangiomas, questioning the need for observation, especially in patients with no risk for significant enlargement over time.

However, routine liver ultrasound follow up in women with hepatic haemangiomas receiving hormone therapy appears appropriate.

https://pmc.ncbi.nlm.nih.gov/articles/PMC1774167/

See I have a problem with anything that probably won’t, would be rare, etc. My mum had headaches that were likely to be caused by one of many things but very very rarely terminal brain cancer but it still was. They can tell me until the cows come home that it’s unlikely but to me I hear ‘still possible’.

Like you I feel uncomfortable disagreeing with the medical profession. The doctor I spoke to yesterday was very nice but I just don’t want to do what he said.

i also have health anxiety and try to avoid tests unless necessary or I’m very anxious. The last thing I want is another LFT because it will cause me endless worry and I don’t see the point. I have no symptoms of anything. I now have to find a way to politely wriggle out of the LFT and HRT!

I agree with your thoughts about them not having grown previously through eg pregnancy. I also took a contraceptive pill for two decades. Or at least I don’t think they grew, who knows. Your one sounds small. Mine I’ve been told are different sizes between 2-6 cm.

In your shoes, I would probably push for an NHS scan to put my mind at rest citing anxiety. It’s worth a try.

Hi again, I have contacted the GPs asking about monitoring with an ultrasound so will see what they say.

Incidentally recently I have had a new lipoma (on my side) and some kind of bony mouth growth which they are now scanning but I these all seem to be hormone related so am considering stopping the HRT.

But then I worry that HRT is good for heart and bones which worries me also!

I hope I am not increasing your worries going on, I do know what it is like!

The reassuring thing is hemangiomas are benign I suppose. I was reading about a woman who had surgery on this massive one, but she recovered and was fine afterwards. The liver is amazing apparently and can regenerate itself.

From my experience with the bowel lipoma it is good that they do know of these things in case they do grow and cause problems then they are at least aware of it etc.

This is all what I am trying to tell myself anyway.

It's tricky when these experts all tell us conflicting things isn't it. I wonder if the herpetologist realise you were on transdermal HRT, and also if the menopause specialist knew much about the hemangiomas as they don't specialise in that but in menopause. But I am no expert myself of course.

Anyway hope you are feeling ok and not too stressed. I am presently going through tests for this mouth growth thing including a CT scan, they said it will take 2 months for the rests and follow up which seems a long time.

The GPs are asking liver specialist if mine needs monitoring due to the HRT and going to let me know.

That’s good to get a view from a liver specialist. Hopefully they’ll be able to advise.

Yes I worry about missing out on the benefits of HRT! I think I'm never happy!

I feel just the same. It's not easy is it. I can post what they say if you like. I got the feeling the GP thought I was a bit of a worrier. But she was polite and didn't say anything

Yes please do share, I’d be interested to hear what they say.

So I have had a reply saying it's benign and doesn't need monitoring while on HRT

Here is the message from the consult

...there is nothing to monitor. These are benign and common. No reason to stop HRT (not estrogen sensitive unlike adenomas). The main reason for being aware of these is that they don't get confused with other pathology in the future should she need scanning for other reasons in the next 30
years which of course is highly likely

Strange how there are such polar views of this isn't it. I don't know what to think really. I'm on cycle day 105 (a new record) so I think for me I will just white knuckle ride the rest of perimenopause as hopefully I'm in the last stages, awful as it currently is, as I am completely stuck on what to do in my instance.

Thanks for sharing your response, I appreciate it. 💐

That's ok, stressful isn't it. I hope all goes well for you. I might tr coming off the HRT for a bit anyway as I am not liking these heavy periods / bleeds etc, before taking it they had been getting nice and light!