Hormone levels very low - a bit worried

[YourSpleenIsDamp]

I'm 45 and had perimenopausal symptoms for a couple of years; GP was rubbish and said to come back when I hadn't had a period for a year! So I went privately with a local specialist, and started Evorel 50 with Vagifem and Utrogestan about three months ago. Had a review last week, and the doctor was a bit concerned that I hadn't seen much improvement in my symptoms, so did blood tests. They've come back and my estradiol is "certainly much lower" than shed expect in someone my age, more like somebody several years after menopause, and testosterone is so low as to be "undetectable".

The doctor has been great; has switched me to oestrogel (2 pumps, to be increased to 3 if I don't feel "much better after a month") because she's wondering whether I'm not absorbing it from the patches, with a plan to add testosterone once my oestrogen levels have improved.

Just slightly gobsmacked; I have an auto immune disease which I'm currently unmedicated for (starting new meds for that in the next month) and had been blaming that for the crippling fatigue. Also have osteopenia, which was one of the factors in deciding to try HRT, yet the rheumatologists have never once suggested looking at my hormone levels, and seem happy to say the osteopenia is "just one of those things", as I don't have any of the usual risk factors for it.

Now I'm wondering how long my hormones have been so out of whack; fatigue is horrendous, I sleep a couple of hours at midday but still exhausted. Main worry is bone density; osteopenia was diagnosed three years ago, and I've been taking calcium and vitamin D since then, but HRT only for three months.

Feeling a bit all over the place now. Why would my hormones be so awry? I'm wondering if any autoimmune diseases affect hormone levels; I don't know whether to ask to be referred to endocrinology, or discuss it with rheumatology in three months when I next see them. Could perimenopause alone be responsible for such low levels? Confused and a little bit scared; I'm starting some pretty hardcore arthritis meds in the next month, but now I wonder if simply getting my hormones under control might fix everything.

Sorry for the essay! Just wondering anyone has experience of this kind of thing? Thanks

Hi @YourSpleenIsDamp Sorry you are so worried which is understandable.
It's a real shame that you aren't getting good support from some drs for your bone health especially.

You haven't said what your auto immune disease is and that will be an important factor in your bone health. If it's something like Crohns or coeliac, that can affect absorption of calcium etc.

If it's a hormonal disease, perhaps your parathyroid, (not the same as 'thyroid') that affects bone health.

Have any tests been done on your parathyroid glands? They ought to be for early bone loss.

This would be done by either an endocrinologist or a rheumatologist.

It also depends on how low your bone density is. Osteopenia can be mild or on the border of osteoporosis. The range for the T-score is from -1 to -2.4. Osteoporosis is diagnosed as -2.5.

Do you have your results?

Also, when was your last bone density scan? They ought to be done every 2- 3 years and more like 2 for someone with a problem. Insist on one now if the last one was 3 years ago!

Calcium and Vit D do not actually build bone when taken as supplements, unless someone's diet is deficient. This is a real area of discussion at the moment and it's changing, although GPs seem to be behind the curve. There is concern than calcium supplements can cause furring of the arteries.

The only women who benefit are much older women, who are not able to get sunlight, or who have a diet deficient in calcium. Vit D is good for everyone in the winter months, but alone, it will not build bone.

The treatment for low bone density in young women (under age 60) is HRT. This is in the statements by the British Menopause Society.

It's good that you are on HRT and you really need a new assessment of your bones now, and again in 2 years to see if the HRT is helping. You also need to do exercise, like weights, Pilates, and brisk walking or jogging. Your bone scan will show which areas are weak- usually hips or spine- and you can do exercises to impact those. The Royal Osteoporosis Society has a great website, videos of exercises, and a helpline - it's really worth digging into their website for advice.

I'm posting from personal experience here. I was diagnosed with severe osteopenia a few years older than you are- no risk factors. I have had advice from a gynaecologist and rheumatologist (privately). With long-term HRT and exercise etc, my bones are pretty good now for someone of my age. (much older than you are!)

Despite having a family history of osteoporosis - my mum suffered spontaneous shattering of her sacrum. I have really struggled to get a dexa scan and HRT the first GP told me that it wasn't reason to start HRT and the one who started the HRT reluctantly gave me a dexa scan and was then dismissive of the osteopaenia finding.
Trying to get a referral to a private menopause specialist.

Trying to get a referral to a private menopause specialist.
@Lonecatwithkitten Are you the OP, or asking about DEXA scans?

You don't need a referral. All the private specialists I know (incl mine) take patients through their own PAs. You just choose who you want to see, phone, and make an appt.

Your GP was a bit clueless as a family history of osteo is the one main reason for monitoring early.

Where are you putting your patches? I presume you change twice weekly?

I've had very similar. I'm so furious that I've been so badly treated. I didn't go private, just nhs referral to menopause clinic. She Couldn't understand why I was on such a low level of HRT and she suggested a scan which showed I too had osteopenia. When I went back to GPs many of them have been equally dismissive even after I've seen the specialist consultant. Disgusting.

I have no idea what other medical conditions you have or might have. but from what you've said and my very limited understanding ( no medical expertise at all!) it is perfectly plausible that many of your symptoms could be menopausal alone.

I suffered with very low estrogen throughout my 30s (due to a specific health condition) culminating in a diagnosis of osteoporosis at 39. I wasn't offered any treatment by the NHS so did research and discovered HRT was required so went though Newson Health and now on 150 micrograms of Estradot patches. Being on 50 Evorel sounds rather low for your age and with the Osteopenia, although I'm no expert and obviously don't know anything about your autoimmune disease and how that might be impacting your health.

I'm not due another DEXA scan for two years so can't say if the HRT has helped, yet, but I'll be surprised if it hasn't made a difference as I think my dose is quite high. I also do a lot of strength training. I have recently started Testosterone as my level was low and feel a lot better already.

Sorry not sure how much that helps. If you can afford it I recommend Newson Health and I believe there's no waiting list anymore (I promise I'm not on commission 🤣).

@JinglingHellsBells not the OP and also not very clear - trying resolve with health insurance whether I need referral or can go. Complicated as covered on husbands policy which is excellent cover, but normally requires a visit to a private GP first which is currently logistically difficult. It's a US/French policy due to his employer/office location.

Thanks everyone for replying. Sorry for missing out vital info - it felt like I was posting an essay! The autoimmune disease I have is psoriatic arthritis; I'm not medicated at the moment. Ater trying and failing three DMARDs I'm starting biologics in the next couple of weeks. There's such a huge overlap of symptoms between arthritis and menopause - joint pain, fatigue, can't seem to regulate my body temperature, am either streaming with sweat or shivering.

The menopause specialist I've been seeing seems pretty good - the Oxford Menopause Clinic - and was convinced my fatigue would improve with HRT. She ordered the blood tests on hearing that I still feel like death warmed up! On the other hand, the rheumatologist thought the fatigue will improve when my arthritis is under control! I'd love to be doing any exercise, but I can barely walk at the moment as the arthritis is flaring in my ankles and feet. Really missing my bike! Been told not to run again or do any high impact exercise after previous shin fractures/osteopenia. All seems pretty confusing and contradictory, and the brain fog doesn't help!

Interesting about the parathyroid. My GP is useless, so I'll talk to the rheumatologist at my next appointment, by which time I'll have had a follow up DEXA scan (last one was almost three years ago) and ask about blood tests. Also wondering about forking out for a private GP appointment - it feels like nobody's looking at the bigger picture, and although I can try and piece it all together, I'm not medically qualified. And I'm completely worn out with all of this, single parent, both DC autistic and need a fair bit of support.

Thanks so much Jingling - your wisdom on here is so helpful. Many times I've gone to type a question here and found you've already posted the answers on somebody else's thread!

Ah, you are having a really tough time. I think in the short-ish term, it would be good to give your HRT 3-6 months to see how you feel. It's also worth getting 2nd opinions if you can because IME (friends etc) there can be as many opinions as there are specialists! You need to find someone sympathetic to your circumstances. Good luck.

I also think 50 evorel is nothing, low, possibly. No wonder you haven't felt much change in awful symptoms. Not every consultant agrees with raising oestrogen levels quickly, but those that do would have you on 125 or 150 (say patches) soon. Maybe ask if oestrogen can be increased?

I've started oestrogel today - 2 pumps for the first month, then increase to 3 if I don't feel any better. I think 2 pumps is the same dose as an Evorel 50 patch, and the doctor thought it might have been I wasn't absorbing any with the patches, rather than the dose being too low. But having read people saying that's a low dose, I won't hesitate to increase it if I'm not feeling better, and suggest higher again if that's not enough. Just need this DEXA scan done, but I couldn't make it to the one they offered a fortnight ago - too tricky with childcare etc - so I'm waiting for an alternative date.

@oblomov - sorry you've been treated badly too. It seems very common; I saw two GPs about my symptoms, and neither would refer me. No mention of oestrogen at any rheumatology appointments three years ago when I'd fractured my shins. I'd be angrier if I weren't so tired!

My levels were 135 on 50 patches and too low apparently; I had awful meno symptoms including flushes still, after an initial boost when I'd first started. (I seemed to get substantially worse a few months after covid in jan.) also 45 and auto immuney, was still having periods!

Have slowly gone up to 100 (I find it hard to go up) and only just started to feel better. On 75 patches my oestrogen was 260. Gp is aiming for over 400, or best symptom control.

I have wondered if people with autoimmune stuff may suffer more in meno.

I don’t want to depress you but it took me 5 years to get HRT I was happy with. If it’s not right after a few months make another change. Be persistent until you’re happy and stable.