To fill in some historic details: I was treated for many years by Katharina Dalton for Premenstrual Migraine and Sinusitis using natural progesterone (Gestone Injections). Successfully. I hadn't been able to work for nine years but after treatment started went back to work full time. When she retired she advised me to stay on the treatment while I had my menopause (it was brilliant, no problems at all) and to continue with it if I felt I was getting benefit from it afterwards as it would prevent my getting osteoporosis.
I took this advice. It wasn't easy. Doctors were always trying to stop me taking it. A visit to reassured me. He said no need to come off it . Take it as long as I felt some benefit.
When I was 62, I was discovered by a rheumatologist to have low Vit D. He sent me for a bone scan. My bones were fine A few months later I had a hip replacement and the surgeon told me that while the joint was knackered, the bone taken out was good quality bone. This for me is enough evidence that it was working.
Forward to age 66. I became very hyperthyroid and lost a lot of weight quickly. I had never had any trouble with the injections before but now I had very little gluteal muscle to inject into and big hard lumps were forming. My GPs were prescribing the injections every month on auto as per agreement when I registered with them. Now I had to ask them to prescribe Cyclogest 400 mg pessaries x 4 daily to get the same amount as in a 100mg injection. They refused. This could be a long story but in short they stopped prescribing it.
Forward to two years later. My daughter had hyperparathyroidism and her surgeon insisted on my having a set of tests. My GPs did not want to do this but gave in when I was persistent. I was very Vitamin D deficient again. The surgeon suggested I get my GPs to send me for a bone scan. They resisted but I eventually got one. Bones are measured on this scan using a negative scale. When a result of -2.6 is reached you have osteoporosis. My left forearm was -2.6.
They tried to give me bisphosphonates. I researched it and found that most women stopped taking it after 3 years with very little improvement because of the dreadful side-effects. I knew this was not for me. I get side-effects to everything some of them really horrific. I let them bully me into taking adcal. I had terrible headaches. I was furious and insisted they refer me back to Nick Panay. He sent them a letter saying I couldn't do any harm to myself using progesterone but it made no difference. He then recommended Utrogestan pessaries because they would have known those and been comfortable with it but he only hoped it would stop it progressing and asked them to do a bone scan every two years.
Two years later they scanned my right wrist because the machine was set in position so that they couldn't get a good view of my left one. They tried to tell me that it had improved but when I was sent for this year for another scan,I pointed out the likely difference as I am right dominant. I have also been deprived of exercise due to the pandemic and illness. So they scanned my left forearm.
On Friday someone from rheumatology rang to tell me my score was now -3.1 so it has got worse. They know I have refused bisphosphonates because I am sensitive to medicines so their answer now is an infusion of zoledronic acid which should last me 12 months. I am terrified. Why are they so willing to risk giving me this when I was on something that was working and had never any bad side effects. Not only did it make me feel well I think it affected my hashimotos for the better and it also kept down my blood pressure. I have had a serious bad reaction to blood pressure drugs.
Please send me any sources of information or you own experiences as I know nothing about this drug but it does not sound like a good bet to give me something untried before in a year- sized dose. Please try to help as this is really upsetting me
[ Edited by admin to remove name of doctor. ]
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Mugs19
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I'm afraid I can't help with your main question as I have no experience or knowledge in that regard. However, this caught my attention:
I was discovered by a rheumatologist to have low Vit D.
and then
Forward to two years later. My daughter had hyperparathyroidism and her surgeon insisted on my having a set of tests. My GPs did not want to do this but gave in when I was persistent. I was very Vitamin D deficient again.
What was done about this? If you had low Vit D then you should have been put on a sufficient dose of D3 to bring your level up and then continue with whatever dose is required to maintain that level. It sounds as though you had some D3 prescribed and then to become very deficient again it must have been stopped. This is not the way to treat low Vit D or Vit D deficiency.
What is your Vit D level now? The Vit D Council, Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml) with a recent blog post on Grassroots Health recommending a level of at least 125nmol/L.
The NHS is only obliged to bring you into the "adequate" category which is 50nmol/L, after that you're usually on your own.
Also, when taking D3 we need two important cofactors - magnesium which helps the body convert D3 into it's usable form, and Vit K2-MK7 which aids the extra uptake of calcium to be directed to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
Unfortunately it's often the case that because doctors aren't taught much about nutrients (if anything) they are ignorant of "optimal" levels and important cofactors.
You asked what was done in 2018 when my daughter was ill and my Vit D very low. I took over the counter meds till I saw my Endo and he prescribed large dosesagain. My Gps ignored the result and never contacted me about it.
When I was up to a reasonable level I was told to stop taking it .
When first lock down started and I lost my Endo appointments for 8 months 2020 I took my treatment into my own hands as far as possible and had blood tests done. My Vitamin D was witthin range but sinking rapidly so I startedtaking supplements again.By the summer of 21 it was over range and endo told me to stop taking it.
Sept 10 2021 123.8(50-125)
25 3 22 111 (37.5-150)
5,8,22 82.3(50-125)
Another test due in 1 month before my Endo appointment
I have been supplementing since last test, BetterYou 3000 iu spray with K2 x2 daily. Some days I forget My arthrisispain and brain fog combine to make me very dozy and inactive. I take magnesium every night 200mg x2. Thankyou for your help and concerns expressed. I will try to follow up the lead on this.
I was worried that my symptoms were similar to my daughters and asked for a thyroid ultrasound scan. It wasn't enlightening. The practitioner was worried by a swelling on the left and called in a doctor. she didn't know what he was concerned about and told him to report it as normal. I tried to get more out of her by asking if my parathyroid glands were ok and she said she could only see one of them and that was alright.I sked how much throid was left after RAI and she said it looked normal in size. Will follow up on the article. Thankyou so much for your help.
I'm sorry to hear about the stress this is causing you. I can't comment on the treatment, but there are two bone health forums on HU, Bone Health and a US-based one. If you post there you may get some helpful information and you'll be able to search for posts on the topic.
If I've understood correctly, you've been diagnosed solely on the basis of a forearm score? Again, no expert here, but proposing that treatment without a proper DEXA scan showing detailed results for hip and lumbar spine seems, ahem, unusual. If nothing else, without that baseline, I don't see how they would properly monitor treatment efficacy.
Sorry, I didn't mean a full body scan, just the lower spine and one hip, in your case the left one. But obviously you've worked out with your doctor whether that's appropriate for you. There's another kind of scan, a REMS scan, that is like having an ultrasound. It's not yet widely offered or accepted, but I mention it in case you'd like to consider it. In the UK it's only offered a couple of places including Osteoscan. Best wishes.
sorry you’ve had a terrible time of it. I too gave up Aledronic acid after a year due to the side effects and my consultant assured me the infusion was the best option. I too was worried but I will say loud and strong it was the best thing I did. It takes 15 mins and a tiny scratch at the start. That’s it!!! No side effects, no nothing just a prescription for Vit D which I top up myself. And the good news is at my last bone scan I’d increased my bone density. I thought all the things you’ve thought but I don’t even give it a second thought now. Oh and over the last 5 or 6 years I’ve only needed 2 infusions as they can last a long time. Good luck and let us know how you get on. 🥰
They know I have refused bisphosphonates because I am sensitive to medicines so their answer now is an infusion of zoledronic acid which should last me 12 months.
I would be worried about any drug that was infused or injected and was intended to last several months. What if the patient was allergic to it or sensitive to it? You can't get it back out again!
I've no experience of zoledronic acid myself, but I think it is the drug my mother was given and it gave her necrosis of the jaw which was excruciatingly painful, and almost all her teeth fell out.
You might find this link useful, although it is a US site and so the treatments listed might not all be available elsewhere, or they may have a different name.
Reminds me of that drug for contraception to last for a year at a time. A friend of mine had it and was I’ll the whole year and more. No I agree with humanbean wholeheartedly.
Hi Mugs19 sound like you've been through a bad time. Taking Zoledronic acid is a really difficult decision to make read up all you can on side effects etc, there is a good friendly group called osteoporosis uk on face book which can give you information and advice, Ive learnt alot from them. I was offered biphosphonates and I only have osteopenia and after reading side effects said no way would I take them and ive asked for investigation as to whether I have hyperparathyroidism as this can cause problems with your bones, Endo was presuming cause was taking t3 and low tsh but told him you can't presume need to check what could have caused it. Dont let them bully you into taking something you are not happy taking.
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