Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Kathleen on March 23, 2022, 09:41:31 AM
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Hello ladies.
Yesterday I had my appointment with Dr Boden at Newson Health. For background I am post meno and while at NH I have been prescribed Oestrogel and Utrogestan plus Androfeme and then changed to Sandrena and latterly Cyclogest. My reason for approaching the clinic was that I was still having issues with episodes of anxiety, low mood and tearfulness. As time went on I also experienced tender breasts and spotting and bleeding.
I am not sure what to make of my Zoom call yesterday and I would be interested in your opinions. Basically I feel that I am no further forward. Dr Boden said that my blood test results were at their best in August last year and I should have been feeling much better then (however although I had times when I felt much better I still had episodes of anxiety and crying so still very up and down emotionally ). I asked if the AD I am taking should be changed but she said that she only really worked on hormones. At our last meeting in January when she prescribed Cyclogest she said that if that didn't help, there were still further options to try but yesterday I think she gave up on me. This may have something to do with her announcing that she is leaving NH and I will be referred to another Dr for a follow-up appointment in June.
The half hour consultation ended with her suggesting that I could contact a company called Life Code who can tell me how well I metabolise hormones however their service is expensive. She also suggested. I contact the nutritionist at NH who may suggest some supplements to take (clearly she had forgotten that I had ordered their supplements in the past which were quite expensive and discovered that were basically B vitamins, vitamin D and magnesium all of which I already take). She also recommended the services of their psychologist. Lastly she wants me to arrange a blood test to measure my oestrogen levels asap but as I won't have another appointment until June I don't see the hurry. Of course all of these suggestions are very costly.
What do you think ladies? As I write this I am feeling a bit lost. I will continue with my HRT regime for the time being but sadly I don't know what to do next to try and help myself get back to a normal life.
Sorry to go on ladies but I promised to update the forum because I know how important it is to learn from each other.
Wishing you all well and I look forward to reading your comments.
K.
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Oh dear that does sounds rather disappointing. I understand why you are not feeling willing to fork out tons more money on this!
Can I ask - Have you got anywhere with NHS services in the past? Or is that why you went private ? Just thinking a GP would be able to discuss ADs and possibly refer for CBT or something as well as looking at the hormones. Although you may have to search around for a sensible one with sufficient expertise in HRT.
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Sadly many Private Clinics will offer alternatives . A bit like Vets who are locked in with various dog food companies ::). Would you consider going to the GP again to ask for an appt to an NHS Clinic? 1 should not have to pay for testing which is not available on the NHS . Hormone blood testing is reliably unreliable.
MayB it's time 4 U to consider an anti-anxiety medication to tackle that side of your symptoms. In 2002 my GP prescribed a betablocka to ease early morning anxiety surges - taken at night they really did help keep me sane.
Also I take 15mg of antidepressant split into two doses day and night as well as having an anti-anxiety emergency drug to hand. I had my 1st panic attack at aged 3, so have suffered intermittently to differering degrees from then. At this time I have no where to dissipate anxiety which can floor me. I wonder often how I ever managed to act/sing on stage!
Relaxation therapy, yoga, deep breathing, fresh air can help sometimes. My singing teacher told me when I was 11 that few people use their lung capacity correctly which can cause anxiety and tiredness. Sing ? Keeping a mood/food/symptom diary helps some to chart the ups and downs of hormone fluctuations.
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Kathleen - I hear you!!! I had the same experience yesterday with my bhrt clinic.
Basically I was told, if I'm not tolerating the prog... Nothing they can do for me. All that money...
My doc had also recorded wrobgky my pre yous treatment. This is the second time there has been a mix up. Not impressed.
Anyway, slightly different in my case, but luckily my brain kicked in and I used the appointment to access further methods of prog delivery. Said I wanted to keep trying... They are my only access to these lower dose products.
So... Now I'm going to do my own experiments. I've got a stock of different products ready to try. I can also buy utrogestan online. So I don't intend to go back for a whole. I'm not feeling they add any value to my trials!
I'm sorry you're in the same position with a paid for clinic. It really feels like they don't need the business and don't care.
Perhaps someone can recommend an alternative clinic for you..?? X
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Dear Kathleen,
My heart goes out to you. I know how much you have invested in this and it must seem all the greater a disappointment as a result. I suppose my concern is that some of these clinics may be getting too "big" and their original promises of being especially interested in more complex cases, dealing holistically with people etc etc seem to be no longer as important to them.
Frankly? I feel it's shocking to be left high and dry with nothing to hold on to till June. In your shoes, I would be profoundly resenting the money spent for no progress in the most important aspect of this journey, having as decent and consistent a quality of life as possible. This can't happen when plagued by anxiety.
As we know, everyone has their unique experience on here and I would not feel comfortable or confident about suggesting or recommending an HRT/AD course of action which may not suit you or cause you further harm.
I think, therefore, some detective work to ask of your practice manager if there is a gp with recent training in menopause management or a special interest in this field. Then, if one exists, book a double appointment, face-to-face (insist on this) with this person and just use the time as well as you can to determine if they have what it takes to determine a way forward for you. If you don't get that "vibe" and you can ask if your case is too complex for them at this point, ask to be referred to an NHS specialist clinic. This is your entitlement and what these provisions are for. Take a friend with you to the gp if that would help. Again, you are entitled to request this or just show up with them! They cannot turn them away.
It strikes me, from what you describe, that not only have you exhausted the scope of NH, but, more importantly, the exasperation is exhausting you.
Take heart, my friend. Seize this opportunity to take control and look to the resources you have, as the beautiful being you are, to line your pockets with self-love and self-care, not those of NH! Go well.
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Kathleen - i agree with Postmeno3....i feel so sorry for you and the time/money wasted.
I too have bad anxiety due to Peri ....i work in broadmoor Hospital too and a Psychiatrist here who is really good told me Sertraline AD is the best for anxiety....so i stopped Citalopram to go on this . I was 6 weeks in on 50mg and just upped to 100mg 4 days ago...so i just have to see.
I am also on Oestrgel 4 pumps, testim and due to start Progesterone 1st April.
Will follow this with interest as sounds similar to my situation.
Please let us know how you get on xxx
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Hi Kathleen ❤ I'm so sorry, I'm not much use, so I can't give you much advice, but have you seen a functional doctor? Or and alternative one. My heart goes out to you and big cwtches ❤
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I see someone at Newson Health, who has helped a lot and so I understand how frustrating it must be to not feel like you are seeing the improvement you wanted to.
I also wouldn’t want to offer too much advice about your HRT prescription, other than saying that your remaining symptoms do sound possibly estrogen related so a test does sound like a good idea. They are signs of high estrogen. It would of been helpful to have that before your recent appointment though. I’m not up to date with your history so sorry if I ask questions you’ve answered here already. Have other symptoms got better? How long were you experiencing anxiety before HRT was started?
So my experience is that I had many symptoms including anxiety that was present before peri menopause and then was exacerbated by it. Is that the same for you? Although improved, I still have anxiety and I think it’s important to remember not all of it is down to my hormone imbalances. So I’ve booked a course of CBT therapy to help me now that I know my hormones are quite good and that what is remaining is more the result of years of wondering what was wrong, that it is more about my mental health and not something taking hormones can completely cure on its own. HRT isn’t a stand-alone remedy, in my opinion, for all the changes we go through at this point in our lives. Because we are still going to experience a different phase of life, physically and emotionally, and we need to address those through many different means. For me, that means HRT, a therapist for CBT, meditation, a change of lifestyle, a good solid relationship with my partner ( which we’ve had to work on since this started ) so I have someone to talk to about this aside from online forums! Plus exercise is super important and helps enormously with anxiety and tearfulness. I like to get outside often, focus on positive things, I avoid social media for this reason too. I hope none of this sounds patronising or dismissive, it’s just what I have found helps. While I do acknowledge the costs involved with Newson, I understand in part that they say their focus is on hormones, and that other issues indirectly or directly affected need to be resolved with the help of your GP or someone who specialises with mental health more than they do. Have you considered seeing a therapist? Anxiety is hard to resolve on your own.
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I found the National Association for Pre-menstrual Syndrome (NAPS) really useful 4 advice .
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Kathleen I feel that I have also had a not dissimilar experience with Newson. I was really hopeful when I had my first consultation but when I told them I needed further help because things were going horribly wrong they offered me a 15 min phone call (for £95). I had the phone call but didn’t really get any further than being told to stick with it. And then got more unwell and have had to go back to my gp for help. Luckily I have a supportive gp but it feels a bit like Newson aren’t set up to deal with complex cases. Although I know that many people have a really good experience with them. I guess it also depends who sees you, as they now have a really long list of GPs that work for them. For me the main issue is that it’s hard to get any support from them after the initial consultation as they only want to see you after three months. Which is fine is you’re getting on ok with the hrt they prescribe.
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Kathleen, sorry to hear this. Since you are postmeno, using blood tests are a good baseline to assess your situation. Are you able to post your numbers for oestradiol, testosterone, FAI as this would be a really good starting point?
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Hello again ladies.
Thank you all so much for your thoughtful replies. I am truly grateful.
I need to sit down and think all this through but I will stick to my current regime for the time being.
At my January appointment Dr Boden said that there were still plenty of options to explore in the future but yesterday no further changes were mentioned. Perhaps the fact that she is leaving NH has complicated matters?
Once again many thanks ladies. I am so grateful to have you all on the forum at times like this.
Take care everyone.
K.
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Hi Kathleen
Sorry you didn’t get very far yesterday. Perhaps email the clinic and say you were unhappy with your consultation. I have done this before with another private specialist and got a free review with a different doctor. Newson are normally very quick due dealing with any complaints
Nik xx
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Hi Kathleen,
I just wanted to say that I hope you feel better soon. You are such a supportive and kind woman. You helped me out when I was feeling lost and at rock bottom. I have the same anxiety and tearfulness :'(. I also have hormonal depression at times. It’s exhausting.
I did see a booklet that was released recently by the Newson team called Reproductive depression. I just wanted to let you know in case it helps with anxiety too.
Here is what I am trying alongside hormones ; Journaling, meditation, yoga, a little weights, I use the calm app for the anxiety..
Sending you love and healing :bighug: :bighug:
Angela xx
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Keep trucking Kathleen!
We’re all trucking with you! xx
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Hi Kathleen
I can really understand your disappointment with NH. It's one of the things that's made me reluctant to go private as I'm also a complex case and I don't necessarily feel you get a wider range of options than at an NHS menopause clinic - and I expect you've been to one of those already.
I totally agree with Postmeno3's comments about clinics having to expand at the cost of the patient experience. Add to that all the extra publicity in the media about HRT and it's no wonder some feel very short-changed.
I do think how we process hormones can vary hugely and in that sense - just to play devil's advocate - looking at alternative testing from Lifecode GX et al might help but I realise you feel tapped out financially and emotionally already.
For me it's estrogen dominance that's the issue. I'm back on taking Utrogestan orally on a conti regime now and I can feel a low mood and fatigue creeping up on me again. All any of us want to feel is 'normal' and it's hard to remember what that was these days!
Keep us updated and best of luck.
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Hi Kathleen,
I really feel for you. Thankfully you don’t have to make a decision today and can research other options.
Will your regular GP prescribe the same products and doses so that you don’t feel ‘stuck’ with NH for medication?
I think I’d let the clinic know that you’re not happy and feel the consultant wasn’t prepared for you as surely reading a client file is necessary before the consultation. Hopefully you’ll get a free consultation, get your blood results looked at and can decide whether to stay with the clinic or not. The next doctor might be fabulous!
Keep strong Kathleen. Sending hugs. X
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Just to add, I have been very happy with my Dr at NH. Jill Crowfoot. I feel properly listened to and when I have had queries in between consultations she has always written me detailed emails within a day or two.
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Hi,
just to add that I had a zoom appointment with NH, and my partner sat in with me. He was disappointed with it all - as was I. We were told " at NH we only do this here". They were not open to any ideas or suggestions . It was very conveyor belt and also the specialist could not answer any complex questions - I do not think she knew - it seemed a bit scripted.
But I am sure that they do help those who have no access to HRT and when they were a small concern they were great for complex cases.
You may want to look at magnesium for anxiety, but not mag' oxide. 400mg a day spaced out in 100mg is apparently a good dose started slowly and built up. But always check with the GP that is is ok etc.
And counselling of CBT helps - so does meditation.
PMxx
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It’s strange isn’t it that NH won’t offer any advice on a bit more of a holistic level; given that menopause usually needs addressing from all angles. Their clinicians are mostly GPs so they should have the knowledge about other medications if hrt isn’t working for certain symptoms. And Louise N was on tv this morning talking about mental health and menopause!
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Hello again ladies.
Thank you to everyone who has taken the time to respond.
I am still trying to decide what to do for the future. The regime I am on currently is Sandrena gel, Androfeme and Cyclogest. Of those I believe only Sandrena gel is available on the NHS so if I returned to my GP I would have to change at least two products. There is now a menopause clinic at my local hospital so I could try approaching them.
Back in January my NH doctor had said that there were still many options to try but on Tuesday she said that she was out of suggestions. I wonder if she just didn't want to start me on a new plan which might upset the doctor that I was being assigned to. If that is the case I am extra disappointed because I don't think my treatment should be compromised just because of a change in personnel.
Thoughout my fifteen months as a patient at NH I have been thinking about the advice I was given by an NHS gynae consultant who said that for some women on HRT, less is more and he advised me to gradually titrate down my dose of Oestrogen. This is a tricky one because when I came off all Oestrogen various symptoms returned, including night sweats, flushing and some VA. The worst by far was that the mood changes and crying became more frequent and that is why I eventually threw in the towel and decided to contact NH and try HRT again. NH by contrast seemed to favour ever increasing doses of Oestrogen as well as minimum progesterone.
Sorry to go on ladies but as you can tell I am still trying to process all this. NH have now contacted me and arranged a follow up appointment with another doctor in June and I will decline nearer the time if I want to attend that appointment.
Thanks again everyone. Your comments and suggestions have been extremely helpful during a confusing time and I am very grateful to you all.
Take care ladies.
K.
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That’s an interesting comment from the gynae Kathleen. I can only speak for myself but I certainly haven’t got any better with increasing doses of patches. And in fact couldn’t tolerate the dose that NH wanted me to take. I’m currently reducing, but was on a high dose. I hope you find the right answer for you soon. x
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Hi Kathleen
All I can say is that my specialist favours low doses of estrogen and progesterone. I’ve only been with her a few months but certainly am having a better result from this than the previous Studd regime, which almost took me out.
So, I’m sticking with low, slow and consistent. x
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Hi Marchlove. I’m not sure if this is the place to ask but can I ask about your previous regime compared to your current one? Were you on higher doses that affected you badly? The reason I ask this is that I’m currently in a pretty bad way and struggling. X
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Hi Dawnp
Yes, his normal one that to be honest is not any different to what you can get from your Gp, but it wasn’t continuous.
3 pumps of oestrogel and 200mg progesterone, reduced to 100mg, but still awful.
What are you taking at the moment? x
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I was up to 200 patches and 100mg Utrogestan but now trying to find a progesterone I can tolerate. About to start Provera. And have just reduced to 175 patches, and will continue reducing.
Was it the Utrogestan that made you feel awful?
Can I ask what regime you are on now? x
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Any Utrogestan to be honest! It’s good that your trying an alternative, that’s the only way you’ll find out what can suit.
I’m in the fortunate position of being on compounded progesterone so I’m taking low dosage, which is suiting me better, but still early days. xx
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I’ve tried three different progesterones now but I’m intolerant so I’m struggling. I would like to try compounded but I don’t think I’ve got any way to access it. Would it need to be through a specialist private clinic?xx
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Yes, unfortunately, although I did spot something, which I’m afraid I didn’t keep, mentioned on a Panay article, which suggested that compounded could be a possibility in rare situations of intolerance.
How rare??
I don’t know if other members have ever known compounded being prescribed under the nhs? x