Should I be Honest?

[DuodenalSwitchaRoo]

Sooooo. As awesome as my GP is, she went to my surgeon to ask which vits/supps to prescribe. I have been prescribed Forcivil, Iron and D3 chewables. I see her Monday when she will include ADEK.

Now....should I take this stuff on top of my other vits?

Also, I see the surgical dietician at the end of May (I still haven't had my 3 month post op visit, but technically they did my bloodwork until I left the hospital on March 6th or whenever it was) so do I tell her I am taking a shit-ton of vits or do I go along with what they say?

It's double edged because if I tell them what I DO take they could learn something, heaven forbid! But they could also flip out about how I'm doing everything wrong etc.

I'm also not following their diet, but from what I read online, their diet is on par with other DS surgeons and I don't know anyone who follows those diets lol.

Have a feeling this is going to be a long ass drive into London just to nod and smile, leave and do my own thing.

 

[Larra]

Your surgery is behind you. No one can take it away from you. I think, since this is a doc you really like, you could take a stab at being honest. Esp since ADEK's are almost worthless for us - dangerous, in a way, because they can create a false sense that we are getting enough of the fat soluble vits we need are really we aren't. They contain the right things, but so little of each as to be useless.
Docs not familiar and experienced with the DS just don't comprehend the amounts of these vitamins we need to stay at normal, healthy levels. ADEK's will lead to deficiencies. You really need to take the separate, dry forms of A, D, and K. E doesn't seem to matter, I have never heard of vit E deficiency, but the others do matter, a lot.

 

[Elizabeth N.]

What Larra said^^.

 

[DianaCox]

Patel SHOULD know more than he apparently does. You and Kirmy ought to double-team him.

 

[DuodenalSwitchaRoo]

Patel SHOULD know more than he apparently does. You and Kirmy ought to double-team him.

Yes, yes he should! I know another DSer he did and she does the vitalady schedule as well....so I dunno if everyone just nods and smiles or what cos the fact sheet he sent my GP was more than lacking :/

@kirmy what do you tell Mr P about your vits?

 

[kirstabelle]

I was taking the AquaADEK on top of Vit D3, Vit K1/2 and Vit A separately. I was taking them because to me they are free.
I stopped 6 months ago and I have become deficient in E.

 

[DuodenalSwitchaRoo]

Do you guys tell your surgical team everything you take? Im seeing dietician/nutritionist at the end of this month and Im not sure how much to disclose.

 

[kirstabelle]

I told Jacques what I am now taking and just how sick I got before I was. He says keep doing what you are doing.
I know Gwen decided to go for it a few weeks ago and told Dr Kerrigan and team exactly what she is taking. They want to see her in 3 months to see how her bloods are on those levels of supplements so a step in the right direction, particularly since he is the most prolific DS surgeon in the UK and his patients appear to be least compliant, even when told to supplement the bare minimum.

 

[Terri]

I would tell them. Maybe it will help doctors and NUTS get a clue. If more start to realize what we are taking and our labs are good, that we are not at toxic levels, then perhaps they will see yes we do malabsorb and do need to adjust for it. Perhaps in the future DSers may get adequate vitamin and nutrition advice. One can hope anyway.

 

[DuodenalSwitchaRoo]

I just get worried. I have had a lifetime of fat-girl-itis. I want to please people and I want them to like me and if I fear they might react negatively to me and yell at me (and make me cry),I would rather lie. I'm hoping I will learn that not everyone needs to like me......someday.

 

[huneypie]

I told Mr Patel I'm doing Vitalady and then some and he was fine. The nut doesn't seem get it though, I don't see her, but I have spoken by phone.

 

[Elizabeth N.]

I would be honest....But I get a kick out of making docs' heads explode. Not everyone is quite that robust in their doc relationships :-D.

 

[kirmy]

Yes, yes he should! I know another DSer he did and she does the vitalady schedule as well....so I dunno if everyone just nods and smiles or what cos the fact sheet he sent my GP was more than lacking :/

@kirmy what do you tell Mr P about your vits?

Oh I told him what I take and he thought that was excellent. He is happy with vitalady. He started me on vita-something which was ok and some of his patients were ok on them but not me. The facts sheet is a bit pants. Beth asked me once if I wanted to put one together but I have no time to do shit. She then went on Maty leave so.......

Just take your Vitalady schedule in and tell them how it is. Your bloods will speak volumes.

 

[Sheanie]

I don't think you're going to have an issue with your doctors. It's the nurses who "interpret" your labs and take down your vitamin regimen that I predict you're going to have words with. I could be ass-backwards, but that's my feeling. I've never had a problem with the actual surgeons or doctors. Its always been their head nurse who thinks she knows everything (but really has no clue about the parathyroid connection) who calls, telling me my D is "toxic" at 120. It's the ignorant office staff you gotta watch out for. Dr. Patel will probably be a sweetheart.