December 2023 – Sam Kelly Fitness

I am sharing this here as I feel it is important to talk about these things and honestly the sudden change in my HRT and drop to low levels has been pretty catastrophic for me as it often can for for people in surgical menopause. Hopefully I can get hold of my specilaist and get back to my normal self over Xmas. I will be dropping the letter into my doctor surgery later today.

Dear XXX Doctors,

I am a patient at XXX and wanted to raise an issue I ran into recently regarding ERT. I am a 50 year old woman and have been in surgical menopause since 2019. I did not initially fare terribly well on ERT and as a result sought the advice of a recognised menopause specialist registered with the BMS who as well as working privately runs NHS clinics. I initially consulted with her on the continuation of night sweats in October of 2021. She suspected I was not absorbing the transdermal oestradiol terribly well and recommended I increase estradot patches to 150 mcg. After this my night sweats, lethargy and hot flushes resolved.

Since that point aside from the odd infection I have remained generally in good health, my blood pressure is fine, cholesterol and all other blood markers appear to be within healthy parameters. I continued running my business and working on part time law PhD. All was in general fine.

On October the 23^rd of this year Dr GP contacted me out of the blue. He felt I was on too high an ERT dose and wanted to drop my dosage. Which he did switching me from the 150 mcg patches to 4 pumps of estrogel. He believed that I would actually feel fine on that dosage and should I not after 6 weeks or so he would arrange blood tests to see if was absorbing the gel. At the recommendation of Dr Specialist when I began to have serious issues sleeping I increased to 5 pumps a day. Over the past 2 months since the change in my ERT I have had quite serious night time hot flushes that result in disturbed sleep, extremely low energy, I have struggled to concentrate and had to take time out of my PhD and felt so tired and actually at times very unwell I had to take time of work. I went from exercising 6 days a week and walking around 13000 to 15000 steps a day to struggling to exercise 3 to 4 times a week and walking 8000 steps a day. I also gained a few pounds in the process. However, I persevered believing that the doctor had my best interests at heart.

My oestradiol level was checked on the 13^th of December and came back at 197 pmol/l (a low level) I also appear to have a higher than normal SHBG which may further be inhibiting absorption. Overall it is clear that I am not absorbing the transdermal gel terribly well. This is the case for some individuals. Dr Louise Newson has previously covered the reasons for this which may include the difference in skin thickness or distribution of capillaries[1]. It is important to note that the amount of medication applied is not the same as the amount of medication absorbed and some individuals are quite simply poor absorbers[2]. When my blood test results returned at the low end of normal and as I was suffering the return of symptoms my assumption was that it would be acknowledged that I was a poor absorber and would be returned to a dosage that allowed me to be free of symptoms and lead a decent quality of life. To my surprise Dr GP stated that he could not support a prescription for above the standard highest dose even with the evidence he requested provided. He suggested that I unofficially use more than the official prescription, but this leaves me with a situation where I may run out early. I also do not understand the logic.

I questioned why this was his recommendation and he stated that there was no evidence as to the safety associated with higher doses, however if I am not absorbing the majority of the gel I fail to understand how I am receiving a higher dose. Dr GP also stated that it was due to NICE guidelines. I could not find a statement in the NICE menopause section prohibiting higher doses in order to control symptoms, in fact the general guidance appears to be to adjust dosage according to response the guidelines also state “Adopt an individualised approach at all stages of diagnosis, investigation and management of perimenopause and menopause”[3] he also cited the main concern as being the risk of breast cancer however the NICE guidelines state “HRT with oestrogen alone is associated with little or no change in the risk of breast cancer”[4] The American Cancer Association states “estrogen-only HRT is not linked to a higher risk of breast cancer. The Women’s Health Initiative studies also found no increase in breast cancer risk in women using systemic oestrogen-only HRT.”[5] Even in women with the BRCA1 mutation who have undergone hysterectomies oestrogen only replacement does not appear to have any increased risk of breast cancer[6].

The other risks associated with ERT such as blood clots are commonly accepted to not be a risk with transdermal methods. I am not sure what risks I am avoiding then by having my oestradiol levels kept at a level that is no longer controlling menopausal symptoms. In fact there is research that indicates in the 50 to 60 age group women who have had hysterectomies and oophorectomies who avoid ERT are at an overall higher risk of all cause mortality[7]

When I raised the potential benefits of ERT to bone density which needs according to research to have blood levels of above 250 pmol/l in order to be effective I was informed that ERT was not given for that nor was it seen as relevant, the control of symptoms was the only reason for prescribing. An interesting statement when a patient raises it as a concern in particular when it is considered that falls are most common cause of injury related deaths in over 75 year olds and injury in over 65 year old. The issue being breaks which of course is far more likely with low bone density[8].

All in all I have been placed in a situation where I went from feeling well and active to not sleeping, gaining weight, feeling very unwell and unable to work plus not wanting to exercise. I was then told that fundamentally this was for my benefit. The appointment itself was classified as “women’s health”. I would be very interested to have it explained to me how gaining weight, losing work, not being able to pursue my PhD, not sleeping and becoming more inactive is going to benefit my health long term when all research would indicate otherwise. I suspect that the answer would be that I must just carry on as normal regardless of how awful I feel, women have historically often been told we must just put up with a lower quality of life and expect less, I did hope that in 2023 we were moving beyond that.

Then there is the matter of how this was undertaken which I feel was somewhat disingenuous, had at the outset the doctor explained that regardless of the outcome of drop in dosage, regardless of any return of symptoms and regardless of any blood results confirming poor absorption he would simply not prescribe above the standard dosages it would have been rather more honest. At which point I would have sought advice from the menopause specialist, not reduced or changed my ERT and asked to undertake blood tests to ascertain my levels at that point. I suspect in doing so I would have avoided a few rather unpleasant months. I presume that the real reason has little to do with my health or wellbeing which has done nothing but deteriorate since Dr GP decided to call me in October and more to do with cost reduction.

I am going to see the menopause specialist with my blood results as soon as I can, which may be tricky over Christmas. I am lucky that I can afford to do so but many other women would not be able to do so and they deserve a quality of life. Being over 50 or in menopause surgical or otherwise does not mean our day to day ability to function in the world should be viewed as so utterly meaningless and insignificant. We still have a great deal to contribute and for those who menopause symptoms are significant HRT or ERT may be a part of being able to do so. However that means ERT/HRT at a level that actually controls symptoms. It may well be necessary to check that levels are within normal ranges via blood tests, if the blood tests come back at the lower end of the range and symptoms are present the logical approach would be to adjust the dosage not tell the patient that they should be fine regardless of whether they are. Women deserve better.

Kind regards

Samantha Kelly

[1] https://www.balance-menopause.com/menopause-library/hrt-doses-explained/

[2] Armston A, Wood P. Hormone replacement therapy (oestradiol-only preparations): can

the laboratory recommend a concentration of plasma oestradiol to protect against

osteoporosis? Ann Clin Biochem. 2002;39(Pt 3):184-93.

[3] https://www.nice.org.uk/guidance/ng23/chapter/Recommendations#individualised-care

[4] https://www.nice.org.uk/guidance/ng23/chapter/Recommendations#long-term-benefits-and-risks-of-hormone-replacement-therapy

[5] https://www.breastcancer.org/risk/risk-factors/using-hormone-replacement-therapy

[6] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6143051/

[7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3780684/

[8] https://www.ageuk.org.uk/latest-press/articles/2019/may/falls-in-later-life-a-huge-concern-for-older-people/

For most of my life I have been the person that worries about letting everyone else down, that must keep going at all odds. This applies to my training, my work and my relationships.

Honestly it didn’t work very well for me. When my daughter developed cancer in 2016 my closest friends at the time vanished. They couldn’t change roles, in most of my friendships at that time it was about the other person, I was the chirpy person who helped them through difficult times. Or who tried to do little things to make their lives better. Then when I was broken and couldn’t do that they vanished. Our relationship was built on uneven ground and when tested it fell.

I had been the same with work and university, feeling that I had to keep going when exhausted and ill. That I just had to keep plugging away. The reality there is no one actually noticed. When I went from teaching classes to working at home the students I had in classes didn’t really mind as they had another instructor who was teaching great classes. My supervisor as long as I met targets didn’t mind how I got there. But I worked through periods that really I probably shouldn’t have.

I continually made a rod for my own back both in friendships and with work. Ultimately this led me to become depressed because I was using keeping going as a way of not actually feeling anything. It also prevented me from making genuine relationships. Relationships that were built around an equal footing.

Then there is the issue of running myself into the ground doing everything for everyone. Because I could not let anyone down. I hated the idea of my loved ones EVER being disappointed even when they had put themselves in that situation. I need to add here that my children are adults. My last blog was about the importance of setting boundaries and why we need to do that with loved ones. Because lets be honest who wouldn’t get someone else to do the things for them they didn’t want to do if it was an option!

This week I have been thinking about the importance of taking time, something I have struggled with my entire adult life. Particularly after my daughter became ill the first time. The keeping going as I had previously mentioned actually made me quite depressed. All of the feelings that were smooshed down hidden by being busy had to go somewhere.

Thankfully as I mentioned in an earlier blog I was lucky earlier this year to spend a few weeks going through a lot of this with a counsellor. Which really helped, he helped in particular with working on setting boundaries but also admitting that I was not perfect, that I couldn’t always keep going. That I couldn’t always be ok.

At the end of last week we had some worrying news. My daughter has a genetic disorder which caused the initial cancer and regularly causes worries. Right now her genes are giving us cause for concern. It might be nothing it might be something. But it is definitely worrying. My normal way of dealing with this would be to act like I am ok, to carry on regardless. To just keep going and put everyone else first. This time I didn’t. On a practical level I need to arrange appointments which takes time, but I am also bone tired which happens when we are suddenly thrown into the mire. So from Friday onwards I shut up shop, I gave into the tiredness, I acknowledged that my daughter needed me there and needed me to be vulnerable and available. I took the week off work and everything else and it was honestly the best thing I could have done.

Although we still have a hill to climb with this particular situation and that will take probably till after Christmas taking the time to stop, to acknowledge that we are once again in a difficult place means that I am at the moment facing it feeling less harrowed. I am still pretty exhausted but not the same level of bone tired I was a week ago!

There is always the risk when we do take time out that we will lose clients (if self employed) or friends if we can’t meet their expectations but that’s ok. Other people need to do what’s right for them and you need to do what is right for you. We are never going to be everything to everyone, we can’t possibly do so. The people who are meant to be in your life will be and for your own sanity I thoroughly recommend that if you need to take the time out of life to deal with difficulties that have presented themselves. You don’t have to always be on top form and it is ok to rest as well as push!

Train hard, rest hard and take time out when you need it!

If you would like to have personal training in a private gym in Alnwick please get in touch.