A little disappointed...

[Boss302Fan]

I saw my Rheumy on 11/25 and he was satisfied with my progress, just wanted me to try to stay within the tapering “guidelines” of not being on a specific dose >30 days, in other words cut DL’s simple taper by 1 week by making adjustments. I said I’d my best (meaning I’m not changing a darn thing) and told him I needed a new prescription of 1s & 5s (setting up an inventory plan just in case).

He prescribed blood workup for the inflammatory markers and Vitamin D titer and suggested I touch base with my GP in case she wanted to piggy-back on his so my insurance would cover it. I provided the GP office on 11/26 with my list of Vitamins and Supplements, doses, and when taken. I also asked if we should look at Vit K, Ca, Folic acid titers as well as Cholesterol related.

The next day the GP Office contacts me saying no additional bloodwork but drop the Vitamin K2 and Vitamin E (I’m taking the mixed Topo / Toco Vitamin E and not the alpha Topo of which the alpha fraction works out to 28 IU and if you assumed all the fractions were alpha topo about 210 IU but it’s not the same).

The reasoning given by the GP via the Office staff was K could cause a blood clot and E a stroke. WTH! Vitamin K2 works with D3 in the metabolism of Ca. It works to prevent deposits of Ca building up in the blood vessels. I’m not taking K1!

Then the Vitamin E, again, I’m not taking 400IU of alpha-topopherol, I’m taking the mixed fraction vitamin E, completely different animal and benefits. I’m like, did she read the specifics of what I am taking?🙁

I’m staying with the K2, gone off the Vitamin E mixed T while I reconfirm my past readings and this time going to save on the computer and print copies..or, pull excerpts and do a print with references and give it to the GP during my next visit.

[HeronNS]

At some point doctors are going to have to recognise that patients are exponentially better informed now than our parents were and give us some credit for knowing rather a lot about our own specific condition. I was told by the only rheumatologist I've had the misfortune to personally cross paths with that only four studies had been done on Vitamin K2 and they showed it didn't work to improve bone health. I looked it up. Yes, at that time four Western studies showed up, but it was unclear whether they had actually distinguished between Vitamin K1 and Vitamin K2, and the results were disappointing. But all I had to do was add Japanese to the search and there in front of me were several more studies, these ones showing the benefits of Vitamin K2. Only a few years ago no ordinary non-medical person would have had direct accesss to this kind of information so we would never have known if our doctors knew what they were talking about or not. They keep talking about collaborative health care but methinks the most important partner in the collaboration is the patient, not the GP, not the specialist....

[PMRpro Ambassador in reply to HeronNS]

They still ignore studies not published in English and some won't accept that work done by non-native English speakers is valid...

[HeronNS in reply to PMRpro]

Well of course the studies I saw were in English. This is back in 2016 I guess, when I went to the osteoporosis workshop at our local hospital. The physiotherapist was great, worth going just for her presentation, the rheumatologist was simply a pill pusher with an agenda, no interest in listening to us.

[kulina in reply to HeronNS]

I also find the doctors are pill pushers. Maybe it's how they are trained? I find the physiotherapists more helpful in treating you as a whole person not just as a disease.

[Hidden in reply to kulina]

There have been times whe in pain from few that I wished my Dr was a pill pusher... 😱

[PMRpro Ambassador in reply to kulina]

They have a touching faith in the value of lab results - without understanding them - and believe a lot of the hype that the drug reps spew.

[Blearyeyed]

Yep , they are proving that they often know less about the specific uses of particular sub groups if vitamins and minerals than a well read patient.

Many of us benefit from K2 but wouldn't be able or need to take K1.

Many use different soluble vitamins including your variety of Vitamin E to reduce the impact of side effects and to maintain the balance of nutrients in the body that are being depleted by its work processing steroids and fighting inflammation.

We do it to help prevent future issues to do with our skin , circulation , digestion etc.

And there's the key , many, many Gps and Specialists couldn't give a fig about , or don't have the knowledge about , preventative strategies and Self Care.

So when they meet a Patient that does they often show their ignorance or are dismissive of things that work.

That's probably why many of Us just get help on forums like this and fund our own supplements.

And hardly ever get a blood test to check for the nutrients as the doctor's won't sign off on the expense.

[HeronNS in reply to Blearyeyed]

I alternate daily between a complete B vitamin and a mixed tocopherol Vitamin E. I hope this way I'm getting enough to benefit and not too much. My doctor added B12 to the list of tests last visit and it was fine. as were the other things tested for, except low iron.

[Blearyeyed in reply to HeronNS]

Yes ( and sorry Boss if you read this reply as well as Heron I have just forgotten where you are ) on the NHS , even with Multi System Chronic Diseases like Me , it is a fight getting even the most basic vitamin , electrolyte and nutrient tests done at all , and then it's once a year even if you show a deficiency.

It took them long enough to start checking B vitamins regularly in UK Patients with certain conditions , I haven't even tried to get my Vitamin K etc checked other than privately as I know what the response would be. My Vitamin D came back this week , still only 42 , that's after a year of increased prescribed supplements but they had no idea because they only do it annually , even if you show a deficiency , the lab won't do it even when requested by the GP , they all just assume that the supplement will work!

[PMRpro Ambassador in reply to Blearyeyed]

And it may briefly - jinasc had symptoms that were low vit D related and a normal course of high dose vit D resolved them quite quickly and the blood level was fine. A few months later the symptoms were back - low vit D again. It took at least another course, maybe 2 and now she takes 2000 IU daily. The so-called RDAs/recommended supplements are not enough for some people.

[Blearyeyed in reply to PMRpro]

Definitely not for me , and none of them have any clue about how important it is to keep those levels higher in relation to heart conditions , or that checking for Vitamin D which is perpetually low despite supplementation can give them an indication of poor cardiac function and the need to increase medication or monitor those already at risk of strokes or cardiac issues more closely

[Hidden in reply to Blearyeyed]

Good tip. I will ask when I have my dmard test in January. My vitd was low at dx pmr and hasn't been tested again I don't think.

[Blearyeyed in reply to Hidden]

Have it annually , and Cholesterol as often as every four months if you can get it.

If you haven't had electrolytes , B vitamins ( Folates etc.) and Liver function tested in a year it's good to check it too.

Upside was, for once , I am still definitely not diabetic!

[Hidden in reply to Blearyeyed]

I have liver function, cholesterol, kidneys, esr, thyroid, fbc etc checked every 3 months or there abouts for dmard. Hba1c 2 or 3 times a year at the moment as I sneak a couple in. They haven't done electrolytes for 3 years. My potassium was low once, but it was the usual take of blood being left sitting too long. B12 was fine but that was 2 years ago. I only know exactly what's been done since my test results were made accessible online 2 months or so ago.

[Blearyeyed in reply to Hidden]

The various electrolytes have been low numerous tines for me in Clinic Tests, and knowing how much they affect heart and brain function , cause increases in nerve pain issues , and can be a warning that we need to change fluid balances to help prevent a UTI or kidney issue , I have decided I will not let them get away with testing it anymore .

My sodium and potassium were borderline low , despite my increased intake of all salts . They had told me to do it but not given me a recommended supplement or amount to take , they need to address it properly now I have records proving the recurring facts.

I know why they don't test though.

The amount of us with good balanced diets but multi system conditions other than PMR/ GCA whose conditions are affected by digestive issues and malabsorption is likely to be huge.

The blood tests cost a lot , and need repeating to show results , and with those tests they cannot deny the proof of malabsorption despite use of oral supplements . There next option is the IV or injections. They have finally jumped on board of the benefits of Vitamin B , but to start a lot of Chronically ill patients on this sort of protocol would be astronomical . At the moment only very extreme or severe Chronic cases are checked regularly and get these options , usually only after they have reached the point that the need food supplementation as well. It's all very costly so definitely something the NHS would not want to be forced to provide.

The solution : if you don't test for it , you can't prove it , so they can say you don't need it.

Pounds over Patients at work.

[PMRpro Ambassador in reply to Hidden]

Low potassium is NOT because of blood sitting too long - that raises potassium as it leaks from the cells into the plasma.

You will like this bit of reading I suspect:

ncbi.nlm.nih.gov/pmc/articl...

Things the clinician often doesn't know. And should ...

[Hidden in reply to PMRpro]

I will prod the dr accordingly. It just shows you can't trust anything tbey say without double checking.... 😕 At least I had it retested and was in the range. 😊

[Boss302Fan in reply to PMRpro]

I’m on 2700 IU D3 total per day I’ll be real interested to see what my blood workup shows, going this Monday to have it drawn.

[Scarter770]

K2 and D3 are most essential. Vitamin E is as well. Most doctors do not recommend supplements of any kind if not made by Big Pharmacy Companies. That is the way they are taught in school.

[PMRpro Ambassador in reply to Scarter770]

In English-speaking countries possibly I'd venture to suggest - here in central Europe we are encouraged to take some reponsibility and to purchase certain supplements by our doctors.