Peri & interaction with other conditions

[LegoFlower]

I've seen there are some very knowledgeable posters on here and I am hoping for some advice. I know I could read up on it myself but I am totally burnout out: lone parent to two SEN children and quite unwell myself anyway so I hope posters here can help me with this. Endless battles to try to get support for my children which is effectively like another full time job on top of my actual job plus normal parenting/ household tasks.

I am 41 and have been having symptoms that I think may be peri. I have no contact with my mother so know very little of family history but think she may have started peri quite early from memory, just from her behaviour.

My GP has done two blood tests and says my hormones are normal but I read this is unrealiable as an indicator because they vary so much over months and between people anyway.

My symptoms are:
• Suddenly very infrequent and light periods (they were totally regular since having children). HUGE PMS before a period arrives when it randomly does, like complete rage.
• Occasional sweats which is very unusual for me, I am usually freezing if it is under 20°C and always have been.
• Lack of motivation to do anything or concentration. Endless procratination.
• Short temper and mood swings which is out of character.
• Absolutely no libido. I have been single for a long time and not dating so not having sex anyway but I used to have the desire to. Now I could not care less.
• Even more problems with sleep than usual. I want to stay up all night and sleep all day.
• Total mental and physical exhaustion and a lot of aching and pain.

The problem is that I have ME/ CFS, autism and ADHD (treated with meds) so have had a lot of the above symptoms for many years, it's just that they have got worse. I know it is very common for ADHD in particular to get worse when peri starts in terms of motivation/ disorganisation. 90% of autistic people have sleep issues and I always have however, melatonin had improved that in recent years until this last year. I am also likely in autistic burnout from trying to raise the children alone and hold down a demanding professional job which could account for some of the lack of motivation etc. CFS/ME obviously means I am permanently exhausted and in a lot of pain anyway, but again it is getting worse. The GP thinks my other conditions account for most of the symptoms, even though they are significantly worse than before (I've had ME/CFS for many years now and obviously autism and ADHD since birth!). She thinks my symptoms are worse because of stress and burnout and not being able to rest, and that it is also likely stress that has caused my periods to stop for months at a time.

That leaves the mood swings and sweating still unexplained but she doesn't feel this is sufficient to diagnose peri and states that per NICE guidelines she cannot prescribe HRT before 45 based on symptoms unless blood tests show hormone deficiencies and from looking it up this seems to be the NICE advice. I would like to try it and then if it doesn't help I can stop rather than waiting another 4 years before even attempting it. She is a very good GP generally and supportive but wary of prescribing it as a trial because she says it can have very negative effects if it isn't needed.

Is there anything I can do? Or am I wrong and these symptoms are likely just my other conditions getting worse due to stress/ burnout and no rest?

Any advice please?

When I spoke to a nurse from carer's support she asked about all of this and said they were very strong indicators of peri and wrote to my GP about it but when I spoke to the GP she didn't think they are and seems to be relying completely on the blood tests which she says show my hormones are fine.

it's hard to imagine that the relentless of your situation with those chronic conditions wouldn't make your usual symptoms worse.

Which other medications do you already take regularly?

Thanks for replying.

I have:
melatonin (sleep issues, autism)
lisdexamphetamine (ADHD)
Pregabalin (pain meds, ME/ CFS. They want to add more but I don't want to go down that path so just live with it atm).
Propranolol and promethazine (anxiety from the autism. I won't touch SSRIs due to bad reactions earlier in life and prefer to take these ad hoc as needed)
Zolmitriptan (migraines)

I have managed to come through a lot of awful things in my life and keep going, mainly to provide a nice home and stable upbringing for my children. Fortunately I can work from home so keep the money coming in. But recently I just feel it's all too much and I'm losing my grip. I have so much to do but just don't seem to be able to get on top of all of the children's stuff with school/ social workers/ specialists etc, and the house, and provide them with enough of my time, and do my job well. At least one if those is always a mess and yet instead of getting on with it I just procrastinate and have no motivation at all. When I was younger before I had children - despite my health issues - I worked 80-90 hrs per week and was very motivated. I just don't want to do anything anymore. It doesn't feel normal to me. I think because of the autism and ADHD I was always very organised to compensate for it and I can't stand feeling like I am failing at everything like this but instead of digging myself out of the hole I get nothing done at all except the bare essentials. The pain from the ME doesn't help of course but the other problems I am well used to "managing" because I always had to, and for much of my life without the ADHD medication or the melatonin which helped immensely so I don't understand why I can't cope now.

Google says that some of those drugs can have unpredictable interactions with at least some kinds of HRT. Also some of them are supposed to help with menopause symptoms. I can see your GP's logic not wanting to complicate the picture trying to figure out which of your medications is doing what to you.

Oh, that's interesting. Which ones are meant to interact with HRT? None of them are related to hormones except the melatonin. I've been on all of these medications for some time now with no issues and she didn't mention any concerns like that, just the NICE guidelines and that they've been told they are not meant to prescribe HRT to anybody under 45 regardless of symptoms unless their blood tests show up low hormone levels.

If you google
"name of each of your drugs" interaction HRT
You'll come up with some, eg for Melatonin:

Thank you. I will do that. I could understand it with melatonin with it being a hormone. For the other medications I'm not really sure why they would interact but I will look into it.

I guess what I really was hoping somebody could answer is whether the symptoms I described are likely indicators of perimenopause at 41, whether anybody has been in a similar situation with other conditions that made diagnosis more difficult, and primarily whether there is anything I can do if my GP is adamant that we must rely on blood tests only until I'm 45 regardless of symptoms rather than try HRT to see if it helps then stop it if it doesn't?

Do people who've researched this a lot/ have gone through this process agree with the NICE guidelines that only blood tests for hormones are an accurate indicator of whether you are in perimenopause and symptoms should be ignored? It seems arbitrary to me that suddenly at 45 it can be diagnosed and HRT provided based on symptoms but not at 41 when surely this 4 year gap must be within the normal range of different people entering this stage? And if melatonin may be affecting my hormone levels anyway then does them measuring my hormones against an average even make sense? It's not like they took a measure before the onset of these symptoms over this last year and are comparing to that: my blood tests are being compared to the average for women my age presumably and given my health conditions etc mine may not have been average to start with!

And I also read that starting HRT later into the process is not as effective for all of the benefits of it so don't really want to wait four years to start it and lose some of the benefits if it might help now. I am not sure what I would lose from trying it now if it might help and stopping if it doesn't, over enduring another 4 years of this potentially unnecessarily if it could really help me.

The approach just doesn't make much sense to me logically. I am wondering if the NICE guidelines are based on averages with anyone outside of those (which I often am in various ways 🫣) as collateral damage, i.e. mainly about rationing funds rather than individual patient needs/ care. And if so (if the guidelines are not reflective of the latest research) it may be worth me challenging the GP on this/ going privately to a specialist.

Bump!

Would it be better to post this in chat? I am not sure what to do.