Latest / The Dr Louise Newson Podcast / 58 – ADHD and the gap in hormone care for women

Transcript

58 – ADHD and the gap in hormone care for women · The Dr Louise Newson Podcast

0:00
So Sarah Jane, it's great to have you on my podcast.
0:03
We're just laughing actually, because Sarah Jane just told me
0:06
that she waffles on a lot. So if there's some
0:09
interruptions, we'll know why. So it's one of the things that
0:13
keeps me going. Actually, someone was asking me
0:16
last night, you know, why do you keep going when you keep being
0:19
told off or you keep being blocked?
0:21
And it's because of stories, it's because of women and my
0:25
patients, but not just my patients, actually increasingly
0:28
people recognise me that they stopped me in the street.
0:31
And it's not just a thank you for your nice Instagram account,
0:35
it's actually usually thank you because you've saved my life
0:39
because I've got information from your Instagram or your
0:43
podcast or balance app. And it's made me realise what's
0:47
going on in my life. And then they could get help.
0:49
Whether they got help in my clinic or elsewhere is
0:52
irrelevant actually, because the first treatment in my mind is
0:55
just being empowered with knowledge and it's very humbling
0:59
and I don't do any of the work for that.
1:01
But it makes me realise that it's really important work that
1:04
I'm doing and I do it with a great team of people.
1:07
So you reached out to say thank you, but it's just useful, I
1:13
think, to hear stories from real people.
1:16
So if you don't mind just sharing a little bit, that would
1:19
be great. OK, hi Louise, thank you for
1:21
inviting me. So I'll try and be as quick as I
1:25
can because I don't, I go around the houses.
1:26
So basically I was diagnosed with ADHD last year last
1:30
September. Life changing.
1:32
All my life I thought I was stupid and lazy.
1:36
Got this diagnosis, got the medication and wow.
1:41
Absolutely wow. My life completely changed, but
1:45
in such a challenging way. So I just tried.
1:48
It's like starting my whole life after 46 years.
1:51
But then the perimenopause crept up along and absolutely blew me
1:57
out of the water to the point where I felt like I was on a
1:59
roller coaster and not the fun kind I was.
2:02
I didn't want to get up in the morning.
2:04
I have everything in my life and more, but I couldn't.
2:08
I didn't feel like I existed. I felt numb and a desperate
2:13
basically. And suicide was something that
2:19
has been in my mind because I just couldn't cope anymore.
2:26
So I had to start pulling my socks up and deciding that no
2:29
one's going to help me. I need to go and do it for
2:31
myself. So after listening to podcasts
2:35
about being diagnosed late and with ADHD and listening to
2:41
podcasts with Ewing and the another lady as well, very well
2:46
named lady as I'm walking around taking a dog for a walk because
2:49
I didn't have any time to do this and I thought, OK,
2:53
testosterone keeps coming up. What is this link?
2:57
So I'd research like before I couldn't retain information.
3:00
Now I'm like a sponge. I am 2:00 in the morning Ting,
3:04
right? What kind of research Now, you
3:06
know, and I came up with the testosterone.
3:08
So I went to my doctor's and I said, look, I'm looking at
3:12
testosterone. They're saying, no, we don't do
3:14
that, but we can give you estrogen.
3:16
And I was like, well, I heard that because with ADHD hormones,
3:20
I think it's, it's a lot worse for us and that we need X amount
3:24
of this, this, this, Oh well, I don't really know about that.
3:27
So here's, here's a patch. So they gave me a patch and
3:30
within an hour I felt sick. And when 3 hours I thought I had
3:33
the flu. So I took it off and thought,
3:36
right, OK, that's not right. I went privately to a menopause
3:40
specialist and I said do you have any, any a knowledge about
3:45
ADHD and she says no. I was like right, OK, but I
3:47
really need that support because there's a link different link.
3:50
You know we are getting treated like other ladies without ADHD
3:53
but we are needing more help. She says well I can give you
3:57
some gel. I reduced the amount off you go.
4:00
Put the gel on and Oh my goodness I was in and out of
4:03
consciousness. I put it on at night time and I
4:05
felt like the. So were you still having periods
4:08
at this time? Yeah, I'm still having periods
4:10
now. Yeah, You see, just just for
4:11
listeners to to know, like if women are still having periods,
4:15
they're still producing some, it's impossible to know how much
4:18
estradiol and progesterone. So sometimes when we give
4:22
hormones, estradiol and progesterone, when women are
4:24
still producing it, you can get too much in the body.
4:27
And this is sounding like, obviously I don't know the
4:30
insurance and outs, but it sounds like that's, that's so
4:32
when people have low progesterone, low estradiol,
4:36
then having those hormones obviously can make a lot of
4:38
difference. But for some women, it can
4:41
amplify too much and make things worse, which is what it sounds
4:44
like happened to you. Yeah, and it wasn't just
4:47
affecting me because like, I've masked all my life and all of a
4:49
sudden I'm having to put my mask back on just to get through the
4:52
day. You know, my family really
4:54
suffered because my mood foods were horrendous to the point
4:57
where I was, I was shouting of a husband because he didn't fill
4:59
the water, the water jar up. What's it called?
5:03
Filter. That's the one.
5:05
And you know, I'm like, he's just empty the dishwasher for me
5:08
and he's just done this for me and he's just done that and I'm
5:10
going absolutely mad at him. So again, I thought, right, OK,
5:14
I need to really look at this. So again, I went back to your
5:19
information, I did a bit more research on you and again, like
5:23
you said on Tuesday about, you know, you're upsetting a few
5:25
people because of the ways that you're wanting to help people,
5:30
which is so brave of you. I think it's amazing because it
5:35
needs to be done. Women are losing their lives.
5:38
And so I, I went to the clinic, I did it all online.
5:43
I had to pay, which is obviously when you're in a situation like
5:47
that, you will pay the money. But I'm very fortunate to be in
5:51
a position where I can pay, whereas there's lots of people
5:54
which I've been in touch with recently can't afford the
5:56
payment. So I've said, look, Christmas is
5:59
coming up. Can you ask people for a bit of
6:01
money instead of a present? And you can put this money
6:04
together because that's because I said really you only need like
6:07
I had two appointments. That's all I had.
6:09
And I got diagnosed with PMDD, which I didn't even know that
6:13
what that was. But I had my start my first
6:16
period at 8. I had really heavy periods.
6:18
I had every contraceptive going. That hasn't helped.
6:22
And I had posted a depression for two years.
6:26
So again, I've been let down outside.
6:29
So it's like so, so when I'm talking to this doctor on your
6:32
lovely doctors, Doctor Dando, she was she was really, really
6:36
nice and she was a bit OK, this is this is going to be a tough
6:40
one. Let's see how we go with this.
6:42
We all have to do things probably backwards with you like
6:47
to say she she thought that PMDD, which made sense.
6:51
So she says what we're going to start with is testosterone.
6:54
So a small amount every morning, every evening, and then we're
6:59
going to introduce the progesterone.
7:00
So I have two weeks on, two weeks off and then see how you
7:04
get on with that. Three months later we'll have a
7:06
chat again and then we'll look at the Easter, Easter gel
7:10
because clearly I was a bit a bit scared about doing that
7:13
after my last two experiences. So within that I would say
7:18
within three weeks, wow, I was my husband's like, what's this?
7:24
And I'm like, I know this is the person I should be, but I can't
7:27
be because of the hormones. But then I'm just crazy lady.
7:32
You know, I would have been put away in a psychiatric ward years
7:34
ago. And that's what's happening
7:35
still. And it and it's absolutely
7:37
heartbreaking because I went to your talk, Louise, which was
7:39
amazing. And that story you told, I was
7:43
bawling my eyes out to the point where I actually reached out to
7:45
someone afterwards because she had the similar experiences.
7:48
And I just feel as though, like I say, I was so amazed by the
7:54
difference. And then after three months, I
7:56
went, come on, let's, let's do it, let's try it.
7:59
And within three days, that was it.
8:02
That was a final piece of the jigsaw to the point where,
8:06
sorry, that's why I'm going to jump.
8:08
I cried because I was just, I've never ever felt so good in my
8:12
life. I'm 47 now and I've never felt
8:16
so alive. I think the word is because I
8:21
always felt so numb because I I've had lots of things thrown
8:25
at me. But then I realise I have to be
8:27
a warrior and and that's what I'm doing.
8:30
I'm a warrior. I'm on a ADHDUK app on Facebook
8:37
and as soon as I see his post going, I've had enough.
8:41
I can't do this anymore. I'm like straight in there with
8:43
have you checked this? Have you checked that?
8:46
And people have probably messaged me.
8:48
I think I've helped about 20 people so far and they went, oh,
8:51
this is what I needed to hear because I'm not getting any
8:53
answers. But a lot of it is to do with
8:55
the cost. People can't afford that.
8:57
No, absolutely. And people shouldn't have to
8:59
pay. You know, I, I've learned a lot
9:02
as a doctor over the last 30 years.
9:04
And you know, when I qualified, I knew vanishing little about
9:08
hormones, especially the role in their brain.
9:11
But also as women, it's often normalized a lot.
9:14
You know, the hormonal changes we get throughout our cycle is
9:17
just something we have to put up with almost.
9:19
And you know, I don't know why we have to put up with something
9:22
because, you know, if people have pain because they've hurt
9:28
the finger or they have headaches or they have
9:31
arthritis, they don't have to put up with it.
9:33
It's fine to medicalise various symptoms, but the problem is for
9:37
women, it's almost like, well, that's just their emotions.
9:40
And people do know it's due to hormones, but they're too almost
9:44
scared or they don't have the right understanding because then
9:47
they think, well, let's just give contraception because
9:49
that's labeled as hormones, but it's not hormones.
9:53
And so increasingly we see and speak to a lot more younger
9:57
women who are like you were 20 years ago, they experiencing
10:01
symptoms. And it's really sad because a
10:04
lot of people don't know what it's like to feel well, because
10:08
it's they just had to carry on like that.
10:11
And many of us, you know, myself included, wish we'd started
10:14
hormones many years before. And we try really hard.
10:18
You know, I think that many years ago, you know, I was
10:21
trying really hard with, you know, exercise and nutrition and
10:25
everything else. Some people just said, well,
10:27
you've got three children, you'd be a bit tired.
10:30
But they never said that to my husband, not once.
10:34
And you know what? Often women know something isn't
10:38
right. And if you're not getting help
10:41
from a healthcare professional, we asked other people.
10:44
And there's a lot of criticism about social media, but actually
10:48
it allows people to have conversations with people
10:50
they've not had before. And not all the information is
10:53
correct. Of course it isn't, but a lot of
10:55
it is. And I think that's what's
10:57
happening in these conversations.
10:58
And then I'm sure it's the same for the forums that you're
11:01
joining as well, is that women are joining the dots quicker
11:04
than healthcare professionals often.
11:06
Yeah, definitely. And it's like, that's awareness
11:09
now where, you know, I get people say to me, oh, you're
11:13
jumping on that bandwagon. Are you got ADHD, have you?
11:16
And I say, oh, what a strange thing to say.
11:18
I didn't know you was with me all my life.
11:21
And then I don't justify it anymore.
11:23
If you're my friend, you're no longer my friend.
11:26
I have lost friends. I am not bothered because
11:30
they're not my people. People who get me have stuck
11:34
around, people who question me or not interested.
11:37
Then I'm I'm too busy now too busy to to get that on with
11:41
everything else. I want to make a difference and
11:43
I don't need that. But going back to the the
11:46
hormone like I'm on three lots of HRT and I said to doctor
11:52
Dando, is this something I can get on the NHS just like well,
11:54
yes, but you you've gone privately now because aren't
11:57
great with doing that. So I was like, right, OK, I will
12:01
try that then. So the next day I actually
12:03
emailed the doctor saying look, I asked for your help, you
12:06
couldn't help me. I'm on my knees, my family are
12:09
on the knees. I've just had this, you know,
12:12
thrown at me now I've had this thrown at me and I just want to
12:15
live. I just want to feel good.
12:18
So please help me because everything I've been prescribed
12:21
I can have on the NHS. So why should I have to pay when
12:26
everybody else doesn't? What?
12:28
Why? What have I done wrong to
12:29
deserve that treatment? And I said, you know, I'd need
12:33
to have a blood test after three months again, that I'll have to
12:35
charge me. Why, why?
12:38
Please help me. And the next day, yes we can.
12:42
Raising. They can.
12:43
And it's like because I would have really, if they didn't, I
12:48
would, I would make a way if people can't say no to me now
12:51
because I'll find a way around it.
12:53
It's like I'm I am on a mission. It's very important because
12:56
you're absolutely right to ask for hormones and it, it's really
13:02
interesting because in the clinic, obviously the clinic
13:04
that I work in is a private clinic, but a lot of people
13:08
actually are able to come once or twice.
13:10
They, they go on the right hormones for them and then their
13:13
NHS GPS take over. They're prescribing.
13:17
But there is still a lot of GPS that say, no, you can't, we
13:20
won't. And I can sort of understand if
13:24
there's they're not getting the right training or education or
13:28
if it was a really, really unusual condition.
13:31
So say for example, I was running a rheumatology clinic
13:34
and someone had an autoimmune condition that needed quite high
13:39
doses of a biologic agent, which has lots, can have lots of
13:43
potential risks and side effects and maybe needs monitoring.
13:47
If I wasn't confident as AGP, you know, I wouldn't want to
13:50
prescribe something I wasn't confident in.
13:53
But what surprises me is that GPS seem quite happy to say, oh,
13:56
I'm not trained in menopause yet or hormones yet.
14:00
Half of their population will have hormonal changes.
14:05
Yeah. So it feels like almost
14:07
embarrassing that they're just got this wilful blindness.
14:10
Whereas if I was a psychiatrist and I'd prescribed you some
14:13
antidepressants and said could you continue these for Sarah
14:16
Jane and the NHS, The chances are they probably would.
14:20
Whereas there are more risks with antidepressants than there
14:22
are with hormones. And you've been very clear.
14:26
Thank you for that, Talking about how the hormones have
14:30
probably saved your life as well and improved your mental health
14:33
and your family life and everything else too.
14:36
So you're not on methadone, you're not on some awful drug
14:41
that has got risks. And then the natural body
14:45
identical hormones. So they don't have the risk of
14:47
breast cancer or stroke or clot or whatever the older synthetic
14:51
hormones do. So it just fills this real like
14:55
sometimes I think I live in a parallel world really.
14:58
And it must be like that for patients because, you know, why
15:01
do you have to ask? So, you know, be so sort of
15:05
worried about asking for something that is just replacing
15:08
your natural hormones. So that's it and it's like for
15:10
the send synthetic hormones for ADHD people that is the worst
15:15
thing you can do. I had a Marina coil fitted and
15:18
within so 3 or 4 weeks taken out and they were like, Oh no, you
15:23
need to keep it in for longer. I was like, listen, I need this
15:26
out and I've done more research. This is the worst thing I could
15:29
have had and if you don't take it out, I'm going to take it out
15:31
myself because I can't. It was even worse.
15:34
My moods were bad anyway, this was even worse.
15:36
And you know, and it's like we're in the 21st century.
15:42
We can talk to people from all over the world and be in front
15:46
of them, but we can't look at this.
15:49
So it's been out forever and ever.
15:52
We've always had the menopause, we've always had periods.
15:56
So why what? Why are we not being looked at?
16:00
You know, it's like I'd been let down with I wasn't looked at as
16:04
ADHD because it was the naughty boys that got all the attention
16:08
and the support I've seen or not support.
16:12
We didn't. So OK, right, OK, I've agreed
16:14
for that. Let's move on.
16:16
And then it's like, well, hold on a minute now I'm going again,
16:18
am I? I'm having to get up and stand
16:21
up and, and just wobble some heads because nobody's doing it
16:26
for me. So I'm having to do that.
16:27
And I am put on this planet to help people.
16:30
That's that's why I'm here. And I have got so many different
16:34
things going on with different things and I just want to make a
16:37
difference. And if I can say just one
16:39
person, which I have done, then I'll keep on doing and, and
16:42
listening to you and, and, and the amazing work that you're
16:45
doing. You know, like, yes, a few
16:48
people have like been a bit upset about things, but
16:50
actually, if you look at the bigger picture, how many people
16:52
have actually saved? But don't look at that you know
16:55
of. Course not, no one wants to
16:57
think about good things, but but you see, it's happened for many
17:00
years. Actually, I'm very interested in
17:01
the history of medicine and there's lots of female doctors
17:04
that have been taken down by the establishment over the years.
17:07
But also women have not been believed and listened to.
17:10
And, you know, you only need to take a peek into the the asylums
17:14
in the Victorian times, they were full of hormonal women, but
17:17
they were a nuisance. So it's easier just to lock them
17:19
away. Yeah, if you go into psychiatric
17:21
hospital now, there'll be lots of women who've been sectioned
17:24
and some of those women, they'll have hormonal changes.
17:28
If you go into prison service, which I have done last year,
17:31
most of the women in prisons have hormonal changes, but
17:34
people are only worried about them getting pregnant.
17:36
So it will give them synthetic hormones.
17:39
And so the synthetic hormones that you say block the natural
17:42
hormones working in the brain. And often mental health can
17:45
worsen. But people don't join the dots
17:47
in medicine. So the psychiatrists don't think
17:49
about hormones and the people who are prescribing
17:52
contraception don't think about mental health.
17:54
So the people that are suffering with these conversations are
17:57
women, and the people that are suffering the most are the
18:00
women's from lower socioeconomic classes.
18:03
Yes, I was about to say. Women from different
18:05
ethnicities, often because of different cultures, but also
18:09
English isn't their first language.
18:11
And women that just don't have a voice because they're just
18:14
pummeled to the ground. So it's not always people from
18:17
low socioeconomic classes. You know, there's a lot of
18:20
people I see who are actually very wealthy, but they are
18:23
having such an awful life and they have no one to advocate for
18:26
themselves as well. Because if you're in a if you're
18:29
in a relationship, it might not be a good relationship.
18:32
So you can't share that. And I think a lot of times when
18:35
people are feeling very vulnerable and low, they need
18:38
somebody else to help them get the treatment that they want and
18:41
understand about the value of hormones.
18:45
And that's where, you know, working with other people, You
18:48
know, I couldn't have done this work 40 years ago without the
18:51
Internet, without social media, We couldn't have done this
18:53
podcast. You know, things have really
18:57
moved on. And I think a lot of medical
19:00
people don't like this empowerment that's happening
19:04
outside the consultation routes. But I think it's really, really
19:08
powerful actually, because a lot of things are about choice.
19:12
You know, we can choose about all sorts of things that affect
19:16
our health either positively or negatively.
19:18
So I can choose whether I'm going to have avocado for lunch
19:22
or whether I'm going to have fish and chips or burgers for
19:24
lunch. And no doctor is telling me off
19:28
for having an unhealthy diet choice.
19:30
I could smoke 20 cigarettes a day and no one would come
19:33
knocking at my door. Whereas if I asked for some
19:36
natural hormones to help my mental health and physical
19:38
health, it's suddenly come to this awfulness and it does seem
19:43
a bit almost laughable. If people weren't suffering, it
19:46
would be laughable, but the suffering is palpable.
19:49
Absolutely. That's why I want to make a
19:51
difference, because not everybody's got what I've got.
19:54
And I that's why yes, on a mission, because yes.
20:00
Which is great because there's lots we need to do and we need
20:03
to work together. And women work better when they
20:05
lift each other up, not push people down.
20:07
And, you know, this is a global revolution that we're starting
20:11
or we've started or we're continuing.
20:13
I don't know who started it, but it's been going for a long time.
20:17
That women deserve a voice and we can amplify our voices in a
20:21
lot quicker ways. So it's great to for you to be
20:25
so open to talk about what you're doing because we all can
20:29
help each other and we learn from our own experiences so
20:32
much. Definitely.
20:33
But just three things. So Jane, that you think are
20:38
going to make the biggest difference over the next 10
20:41
years because we can't be in this mess in another 5-10 years
20:44
time. It's not fair on women who are
20:46
suffering. No, not at all.
20:48
So the only thing is, it's just getting it out there and and
20:52
also like doctors, why can't they have one nurse who does a
20:57
course on menopause, menopause in ladies with ADHD, menopause
21:02
without ADHD and have a have a nurse at that practice.
21:06
Yeah, that's so important. That's sensible.
21:09
It's it's. It's simple, isn't it?
21:11
Yeah, it's not rocket science, but but I think things are
21:14
changing and we need to just keep changing quicker and faster
21:18
to help and reach more. Like people like yourself, you
21:20
know you are you didn't you didn't come into menopause
21:25
support you. You had a different life before
21:28
this, but you've made such a difference to so many people's
21:31
lives and, and you're just such an inspiration.
21:34
And yes, you just, you need to be cloned.
21:38
So I want to be 1 no. One really wants my life, I tell
21:42
you. But well, thank you so much for
21:45
coming today. It's been really great.
21:47
Thank you. I really appreciate the support.
21:49
Thank you.