I’m not looking for medical advice, just your thoughts. I met with a hepatologist mid January for consultation. I was very impressed with him but I have a problem with one thing. He wanted me to take 10,000 IU Vit A daily & prescription 50,000 IU Vit D weekly. My levels were not checked but Vit D was normal in July. I have researched enough to know an overload of those two can cause hypervitaminosis. I took one Vit D and said nope! I finally got word that the hepatologist I have been waiting for since October will officially be here 1st of April. I will be seeing him & until then, no vitamin supplements.
Thoughts?😊
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gwillistexas
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Hi Arlie. Exactly. I have taken 1,000 IU d3 daily & have for several years. I’m probably going to have Internist check my levels pretty quick when thyroid is checked. That way I’ll know. Hope you’re doing better😊
I can't speak for the vitamin A, but my D is very low at 14. So I was prescribed the same 50,000 IU as you were. Freaked me out at first, but after researching..that is what is recommended to get it up IF you are in a deficient state. I don't blame you for not taking it since you were just at a normal level in July. Plus youcan ask the new doc about it soon. I suspected mine was low due to previous history and was already taking 2000 IUs before I had labs done and that obviously wasn't touching it. I can say I believe it is making me feel better and I'm only 3 weeks in. I'm usually skeptical about something making you suddenly feel better, but I definitely have had more energy. So if anyone's doc is not checking vitamin levels, I'd recommend that you at least ask about it. Sorry for the long post. Keep us updated🙂
I was low in 2015 and took 6 weeks of the 50,000 IUs and never had it rechecked. It was low again this past August when I was diagnosed, so did 6 weeks again. It was even lower in January which is concerning. This time my hepatologist prescribed it for 12 weeks! That's a lot of vitamin D! 😳
It is. I probably would have felt better about it if he had asked it to checked after a certain time on it. He scheduled me to see him in 6 months & Vit is nowhere on the lab order that he wants week before appt.
I totally agree with you. It makes no sense to "assume" you are low. I see my hepatologist every 3 months right now so I'll have a recheck in March. It's a little scary taking that much but I'll roll with it for now. Good luck with your new doc🙂
I just checked my D results from Oct 2018 & it was 43 total. Labs also have D2 which was 1 & D3 at 42. Do you know what your D3 & D2 levels are? I wonder if there is a reason your doctor prescribed the D2.
I just read that some labs still combine into one test but there are newer methods that break it down. Obviously my lab isn’t one of them. I wonder why A test is taking longer. Maybe I’ll know result tomorrow. 😊
So glad you had it checked and the result is great news! I am wishing for a 70! I always say "go with your gut" and you were right in this case. We have to continuously advocate for ourselves. I trust my doctor but we've had a few interesting conversations. I'm pretty sure he thinks I'm crazy, but no one knows me better than I know myself🤪
I understand they hold their well earned title of specialists but they’re only human. 😊 I’m glad I had it checked.
I agree with others above. Why has he prescribed without a blood test? And if you took it without being monitored it may give you unwanted raised calcium levels. It's may be that most of us in Northern Hemisphere will have lower vitamin D levels in January than in July, but we are not "most people". We are ourselves, having gone to great inconvenience to get individual advice? Not long to wait, like Arlie says, and that's the hepatologist that you really wanted to see. Best wishes
The rx was written for D. I looked at it last night & it’s Vit D2, not 3. So I researched D2. It is different from 3. D2 is used to treat hypoparathyroidism & few other things. I’m wondering now, if he thinks because my thyroid levels won’t stay normal because of parathyroid. Would make more sense but it still should be tested.
Yes...too bad it didn't occur to you to ask him those questions during the appointment. I was on the Megadose 50,000 iu for 8 weeks since I was low. I was going to supplement with OTC D3, but hepatologist said, I’ll prescribe them so all you have to do is take it once a week. After the 8 weeks, supplemented with 2,000 iu. He checks my Vitamin D every 3 months. I haven’t had Vitamin A checked.
Can you ask him the question by calling or sending a note via patient portal? I think you have every right to ask that question.
I don’t recall if it were D3 or D2 since it was prescribed to me a few years ago when pbc was diagnosed. Yes, it was normal after, but you need to keep taking lower dosage, store bought D3 to maintain adequate levels. I take 2,000 iu D3 daily. My doctor checks my D levels quarterly.
Yes! Thank you. From what I've read D3 may actually do a better job of keeping it up. I was taking 2000 IUs that didn't seem to be helping. I may go up to 5000. I guess I'll see what hep says in March. Thanks again🙂
Firstly the point is that we pbcers do not absorb a, e d and k properly... so it can def be a good idea to supplement.
if you are unsure of the levels then you could ask the consultant secretary to check with him about amounts... or perhaps speak to the pharmacist... they would be able to check the levels with your conditions, best wishes cazer.
Yes I understand the absorption problems but still feel it should be checked first. The pharmacist did say with the Vit A I have to drink loads of water because A can settle into fat cells. She said 8,000 IU is normal dose. I can only hold so much water😁
i had supplements before transplant... but can't remember what doses... iwas certainly better for them.. but if you are not happy... perhaps ask gp to check levels... and hold off until you get results.. at the end of the day you have to do what you feel happy with.
it may have been symptoms which led to the prescription.... e. g... skin issues joint problem etc... which perhaps the consultant has seen lots of times before and knows are down to the malabsorption.
its worth waiting a few weeks if you are not comfortable with it, best cazer
When I was first diagnosed, I was given the 50000units/weekly for 2 months and then 5000/daily by the gastroenterologist. My primary was stunned that I was taking such high dosages but lab tests revealed that my Vit D levels were still borderline low. My dietician son told me that with PBC our bodies are only able to absorb a limited amount of Vit D. My solution? I now spend the winter in sunny Florida!
My dermatologist doesn't want me to be in the sun without sunscreen, though my hepatologist said, go sit in the sun. I supplement because sun does too much damage to skin. 😎
G’morning. I’m not 100% sure myself. All I know is when last fibroscan showed F3 fibrosis, my GI felt a hepatologist could explain & put my mind at ease. And it worked 😊
Cazar, are you applying Gwillistexas is not sick enough for a Hepatologist? I don't think any of us want to be on this site & or having to see a GI or Hepotologist. My understanding is PBC is a liver rare disease & Hepotologist traet rare liver diseases. Symptoms do not determine your stage of PBC. F3 fibrous is definitely not a early stage. I'm sure I am not the only one, I have not been treated by a GI I have only seen a Hepotologist. I hope that does not come across snotty. Was not my intentions. I feel like people feel a entitlement for being sick.
i was just meaning that in England we do not get regular bloods as the normal... only if there is a problem or they are looking for something...
my point is that here gwill... would br be in the dark probably and that it is good that he/she is under hep... you obviously have a better system over there... most of our local hospitals do not have hepatoligist only general Gastroenterologists.. hence my suprise. i also did say I have no knowledge of fibro as that was way sfter diagnosed and never had one...
also i did not know about fibro.. and he said he was symptomless.
not sure what i said that was wrong but heh ho, best cazer.
hi again... i think the confusion came from the time line... if you read my comments in order i thought gwill was symptomless and cirrhosis free.... hence my surprise and really was just agreeing that maybe the vits were abit previous... but have to say feel abit got at.... bye cazer
cazer...maybe I need to clarify. No, at this time I do not have Cirrhosis. I’m really very thankful that my GI referred me to a hepatologist to help me better understand this disease & hopefully keep me on the right path to keep my liver healthy for as long as possible. Nothing wrong was said, I think just a little misunderstanding. 😊
Thank you. No hard feelings either way. 😊 I don’t think Bobbie meant to come across in a harsh manner. She’s a very nice lady & ive come to know her well through this disease. 😊🦋
I think it is better for you to see a hepatologist for peace of mind. You have pbc & a hepatologist treats liver issues whereas a GI is more of a generalist.
Agree. And even though my GI knows a lot about PBC, I’m still very thankful for his referral. I did find out when I went for labs today, alcohol can affect your Vit A levels. I don’t drink but didn’t know that. 😊
I saw my GI one time. The rest of the year I saw his NP & she is loaded with knowledge about the liver. She will still be following me as I’m seeing hepatologist. Love her😊
What would be the difference between regular vitamin D that you would buy at the store and the prescription vitamin D the doctor would give? Does anybody know?
Dosage...prescription strength D is 50,000 iu & you only take one per week for 2-3 months depending on doctor’s direction. Store bought is at most 3,000 iu taken daily (haven’t see higher than that).
You’re welcome. My hepatologist said it is easier to ramp up the D to desired levels with the prescription strength D, then maintain with daily doses of store bought D. That is why he prescribed it.
perhaps that's why she was so defensive of you... nice to have good friends but not at someone else's expense... it has really got me down... but there is no point in trying to defend myself as my comments have obviously been very misconstrued... it was an innocent comment about the hep which has turned into a bit of a nightmare... all i ever try and do is give info if i think i have some... and then the feed turned into a chat I just don't understand her reaction... entitlement for being sick... what does that even mean.... am I getting backlash for something else... sorry just don't understand????
cazer...I can’t speak for her or anyone else. Maybe it was a bad day or moment. I truly do not feel she meant to hurt you in any way. I realize sometimes our words may not be received as they are given. Some of us who are In the States, don’t understand the medical system in other parts of the world.
Can we just put it to rest? We all mean well & we all need one another. Without one another, some have no one. 😊🦋
i think you are right that it is a cultural thing.... in England we mostly get referred to a hep at a transplant centre when things are fairly far advanced.. hence my surprise when you said you are under one.... this is a 200 mile round trip for us.. so really not so great in some ways....
i appreciate your efforts to smooth things over and yes fair enough a line will be drawn but bobbie should not have fired off... ive not had the best week either... tooth abcess... and lots of pain from Pancreatis (recovery) so none are that strong....
no I'm not going for sympathy vote... but just didn't need uncalled for such lack of understanding.
My 2 cents. The medical systems are completely different. In the US, medical care is not administered by the government. Most doctors will not try to address issues they have little familiarity with. Hence, if you are diagnosed with pbc, you should be under the care of a hepatologist. Likewise for those of us with thyroid goiters, we are monitored by an endocrinologist. There are a lot of specialists especially in the major metropolitan areas.
gwillistexas my vitamin D wasat level was low so my primary care dr started me on vitamin D injections a month ago I will get injections once per month for 4vmonths then none until next year. I'm also receiving monthly B12 injections. My hepatolist said it was okay to have both.
genj65...In 2010, my b12 was depleted. I took injections for 3 months then was told to use sublingual b12. My d was also very low so I took prescription to get it back to normal, then 2,000 daily. All has been good. Last July my d was normal but not high normal. I should have results tomorrow. Thanks!😊
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