Osteoperosis in family, low vitamin D

[Anna212]

Hi all, I havnt posted before, I live in Cornwall UK. I did a private thyroid test through blue horizons medicals, which thyroid uk recommend, which also included screening for vitamin D. My results for it came back as 15 for vitamin D and states should be over 50. I opted for G.P comments which stated significant vitamin D deficiency which advised supplementation and seeing my G.P. Iv been having fluctuating symptoms came on 2-3 months ago of bone pain/aches , lower-mid back pain and in around hips, bones cracking, muscle aches/spasms, low grade fever, weakness/fatigue. There is Osteoperosis on maternal line-my mum, her mum and her mum, so 3 generations (I'm 44) I find this concerning as I also have a history of Anorexia several years ago and my eating still isn't as structured as it should be, though my weight is up. I took my private results to my NHS G.P yesterday and also mentioned of the Osteoperosis in family of my mum, gran and great gran. My G.P doesn't seem too concerned and also pretty much discounted my private test and Vit D levels, as I had a standard NHS test for iron, thyroid, liver, kidney blood test 2 weeks before doing my own test and my G.P stated the results were not the same, but I'm actually thinking I may have autoimmune thyroiditis and with this levels can fluctuate. It didn't include Vitamin D, as my surgery wont test for it I was told yesterday. Iv tried to do some of my own research and have read that Vitamin D is needed for absorbing calcium. I bought some D3 and currently taking 1000 IU, but thinking of increasing it. Another thing worrying me is I have been prescribed an antipsychotic called Amisulpride and again come across that antipsychotics and some psychiatric meds can lower/deplete Vitamin D levels and affect bone density. I was honestly expecting G.P to send me for a bone scan to check with the history of it, but just didn't feel taken seriously. Iv looked at NICE guidelines and my G.P doesn't seem be following them.

[Kaarina]

If I were you I would change your GP or ask your "uninterested" doctor if he will refer you to an OP specialist. This is what I did and I see a doctor in the endocrinology department of my local hospital twice a year. I also suggest that you give the NOS helplines a call 0808 800 0035 (free from mobiles and landlines) and tell them what you have told us. From what you say I would think you are more than eligible for a DEXA scan to find out your T scores.

Your Vitamin D level test result is very low, it should be between 80 - 150. My OP doctor is extra pleased with my result of 123.1 and I have it tested twice a year on the NHS, in April and October when I see him and the result stays stable. I do not sit in the sun but I eat lots of sardines.

Do let us know how you get on if you speak with a nurse on the helpline. Look after yourself.

[Nanaedake]

I agree, see a different GP. With a vitamin D level that low your GP should be concerned. 1000iu is not enough for the kind of deficiency you've got. I would go back to the Thyroid UK forum on healthunlocked, post your vitamin D result and ask what level of supplement you should be taking. The Vitamin D Council website has good recommendations too.

[HeronNS]

Definitely you need more Vitamin D. My level was too high so I brought it down to 80, which I was told was "low normal", last test was something like 100 which I think is a good level. There are a couple of different ways of reporting D levels, I think the two measurements are ng/mL and nmol/mL (1 ng/mL = 2.496 nmol/L). Which measurement did the private test indicate for you, and did your doctor understand which level was being used?

[Anna212 in reply to HeronNS]

Thankyou for replying HeronNS, 100 does sound like a good level. On my results for the vit D it states nmo1/L 50 - 200, so is good it states the ranges it should be in and I can aim for. My G.P didnt spend much time looking at my own results let alone how they measured it, which was quite deflating really.

[HeronNS in reply to Anna212]

Yes, the 50 level is the absolute minimum. That used to be considered optimum, but we've learned more about the importance of D in our bodies and that we need more. As the others here have said you need a doctor who cares about the health of his patients, and you need more than 1000 IU per day, at least until those levels get better.

[LynneH-19]

Hi Anna

Have you actually been diagnosed with OP from having a DEXA scan? Have you broken bones yet?

Regarding your vit D. 15nmol/l is very low.

I personally took 5000 IU of D3 in gel capsules that contain the D3 in olive oil. Drs Best brand, which I order via the internet from a U.K. firm called Bodykind. Look on Amazon as well, but make sure it’s fulfilled by Amazon. Avoid buying from the US as you will get stung for customs duty.

I aim for an optimal D level of around 150 to 170 nmol/l. This not only helps your bones, but also other body functions like your immune system. Since reaching this level I never now catch colds, flu etc, although the staff I work with, seem to catch everything that’s doing the rounds.

I maintain this level by taking 2000 IU D3. I will vary the amount according to my blood level, season and weather.

In summer if I’m working in the garden, or on holiday, I wouldn’t necessarily take any, if I’m getting some sunshine.

I arrange a D check approximately every 5 to 6 months. Remember to take your D3 with a fat containing meal. I take mine apart from my K2 and A retinol, so I sometime take it with a teaspoon full of coconut oil, if I’m not having sufficient fat containing meals.

Like you my GP won’t do vit D requests, so I arranged a postal, finger prick collection kit test from the NHS Birmingham Hospital lab. I’m on holiday at present so haven’t the contact details with me, but the test cost approximately £28. I can provide more details if you remind me, when I get home in a couple of weeks.

‘Vitamin K2 and the Ca Paradox’ by Kate Rheaume Bleue is worth reading, if you haven’t already seen it.

Don’t forget quality protein is needed for the maintenance of the collagen bone matrix. This is what gives bone it’s strength and flexibility.

blogs.creighton.edu/heaney/...

He was a Professor in the US, who was also a vit D expert and wrote many papers. Unfortunately he passed away last year. He recommended 1.2g of protein per KG of body weight. More than the U.K. RDA, but his evidence seems reliable.

I know nothing about the drug you are on, so cannot comment about that.

Best wishes

[Anna212 in reply to LynneH-19]

Thankyou for replying LynneH-19, no I have no diagnosis, as found G.P quite dismissive of my symptoms and family history of osteoperosis. No broken bones, but thurs before Easter I could hardly walk lower-mid back pain going into and aroung hips, bone aches and fatigue/weakness, clicking joints. I felt worried bending over as my bones been all crackly, I felt so depleted I kept breaking down crying. Also skin dry and my nails very brittle and dry. Iv read vit D is a hormone, so must be why symptoms fluctuating with my hormones. My mum has broken and fractured her bones couple times and my gran's leg snaped, she fell to the floor literally and had her leg amputated. Iv ordered from bodykind before, so will check those vit D ones out. Thanks for all the info and also about the protein and fats-I keep coconut oil in. I may actually buy some grass fed collegen aswell. Have a good rest of your holiday

[Met00]

I agree totally with the others that a Vit D level of 15 nmol/l is MUCH too low and it sounds like you're actually experiencing symptoms of Vit D deficiency. I would definitely see another GP asap, they should be prescribing a high dose of Vit D to raise your levels as a matter of urgency! I can understand your concern about osteoporosis too, and you do describe a number of risk factors that should be taken seriously. Osteoporosis itself though doesn't cause symptoms, not till you break a bone and experience pain from that, so if you haven't broken anything it's far more likely that the pain and fatigue you're experiencing is down to Vitamin D deficiency. I'd get the Vitamin D deficiency addressed first as that seems very urgent to me, then ask to be checked for osteoporosis.

[Anna212 in reply to Met00]

Hi Met00, yeh I was quite alarmed when my results came back. That's good info to know, as I didn't know osteoporosis doesn't cause symptoms until a break. Thanks for the info-people have given me some really good info and having it confirmed that I'm not just being over the top in my own concerns with it.

[judej]

Hi Anna, Your GP should order the DEXA scan based on your Mum's and Grandmothers breaks and fractures not to mention your anorexia. My GP was hesitant as well even though my mother had severe osteoporosis and my father had it in his hips. I even had a letter from my hip surgeon stating I had osteoporosis! It wasn't until I went to my GP last week while she was filling out the request form that she asked if my Dad had a fracture in his hip and I said yes and that ticked the box! I got my DEXA scan the next week. So make sure you tell your GP about your mothers fractures. Good luck and don't be defeated. There is a lot of support for you here.

[Anna212]

Thanks judej, really good you have got somewhere with getting it sorted. I actually have to collect my new psych meds from pharmacy and I'm planning to say to pharmacist about weather It's o.k for me to take these new psych meds with a serious D deficiency, because I don't want my levels lowered anymore and I will tell them what my level is and see what they say, as been affecting my heart rate aswell.

[Nanaedake in reply to Anna212]

If the GP refuses to refer you for a DEXA scan and you really think it's crucial then ask for the refusal to be recorded in your notes. Ask for it to be recorded in your notes that there is a family history, you have suffered with anorexia and you have a severe vitamin D deficiency. You might risk getting their backs up but at least your concern has been recorded and if your symptoms continue after you've increased your vitamin D levels then it might trigger a referral in the future.

[Anna212]

O.K thanks so much, I have made appmt with a different G.P in same practice for next month-not til 21st though. And I have increased D supplement. All the info Iv had here is/has been really helpful.

[Kaarina in reply to Anna212]

I wish you all the very best with your appointment next month and do let us know how you get on.