How often do you see your Doctor

Is it normal Doctor practice that after 12 months seeing a Doctor for ITP and with lot's of issues (thyroidectomy, parathyroid tumours, recently dx with RA and on methotrexate, fibroid embolization ) that he says on my last visit about one month ago he tells me that he doesn't want to see me again for 12 to 18 months.

I have discussed this in another post but I just would like opinions, he is a nice man but he has at times let me down by being a bit slack. Thank God that at time when I couldn't get to see him I seen other Doctors in the same practice and they acted on my problems immediately with referrals to specialist and treatment. ( These were problems that he knew about)

I am having regular blood test done with the methotrexate, so is this enough.

Thanks.

Milly:

You know everything that I have going on and I only see my hemo once a year. As long as my platelet count is okay, there really isn't a need. If I began to have problems again, I'm sure he would suggest an appointment. Even when I was having problems, I still only saw him every six months. I'd go in for counts and if need be, the treatments would be discussed on the phone. I was fine with that - I was being treated and it saved me from having to leave work and go in there.

I still see my other doctors regularly for my other issues, and that's enough!

How have your counts been?

I have an endocrinologist for the thyroid - actually I think I'm on my 4th [had one and then had to change medical plans and so had to get another - he then moved to another office in the HMO too far away for my gas tank so I started seeing another in the close office, I fired him when he kept calling me Melanie when we talked via emails, so now I have a female endo so yeah she is #4]. If I'm feeling "off" I just call her and ask her to put in an order for a thyroid panel.

You know Milly, the endocrinologist I fired was very nice - I got along with him just fine, good personality. But "nice" doesn't make a good doctor.

I think that you are even asking this question means you have some good doubts - I think that you have seen other doctors in the same practice and they have taken your concerns/problems seriously and have referred you to a specialist when needed means that you are not happy with the doctor you have. Maybe it is time for a change.

You know when we had to change our medical plans we switched to an HMO it probably was the best thing to happen for me. My "old" doctor I had been seeing for 22 years and I don't think he was listening to me any longer, yes he was hearing me but he wasn't listening. I honestly don't think he would have picked up a few problems my new doctor did.

So my opinion is - if this was me and my doctor knew about some problems and did nothing about them and I saw another doctor in that practice for the problem and he/she did refer me to a specialist - I'd go with a new doctor. You know why? because if "me" were my child I wouldn't put up with that [heck I wouldn't put up with that for my pet] - so why put up with it for me

Yeah thanks for you quick reply and I think a second opinion at least is in order, I have no endo , no hemo just a GP. Not sure what my last thyroid panel showed as he said he would call is there was a problem but I don't think it is right just seem to be putting on a lot of weight and not eating much at all. The only other Dr I have is a rhuem and he is fine.

Last year when I first got ITP the specialist at the hospital asked my Dr to send me for H-pylori test and he didn't do it, turns out it was positive and after one treatment was still positive so second round of antibiotics ( my dr didn't order the test I had to go back to the specialist to get the test ordered) I still have not had another test to make sure I no longer have it.
I also was really bad shape with the parathyroid, (gives you symptoms pretty similar to the effects of pred) so I had a double whammy there 50mgs of pred and the symptoms of hyperparathyroidism made me feel so bad that a couple of times I had to go to hospital for a drip to clear the calcium from my blood. He still did nothing another dr had to followup and get in touch with specialist, the list just goes on and on.

Sandi,
my last count, about a month ago was good (in the 200) I need another one in a week or so. Not so sure it will be ok though got so many bruises today (counted one arm this morning and about 10, only small but just like perfect little round circles) odd to me as even when I was at 2k I never had bruises or the spots. I feel ok though.

Melinda,
I guess you are right, after writing this it sort of brings it home I wouldn't really be happy if my vet treated my dogs like this so why am I accepting this for me.

I guess I am just worried that I am turning into someone that is always looking for something to be wrong and it doesn't worry me not going to the Drs but I also think that six months is too short a time to even know that my thyroxine levels are ok.
Other then the weight gain and tiredness I am feeling ok, so I just wondered if the 12 to 18 months thing was the normal.

I think you need an Endo for sure.

Try not to worry about the bruises. I've had a heck of a time with bruises lately and I'm blaming Prednisone, MTX and aspirin. I've had some weird skin things since starting the MTX...my skin is flaking in the strangest places. I've gone through a lot of different lotions until I found one that is helping.

Were you asking if the 12 to 18 months was okay for the hemo or a different doctor? I'm confused.

Yeah Sandi, not really too worried about the bruises as it maybe the Meth, and I did have to have some prednisone last week so I figured that may be it.

I dont have a hemo so apart from seeing my rhume I would not be seeing any doctor at all, sorry for the confusion a blonde moment on my side.

Oh, your Rheumatologist said not to come back for 12-18 months? If that is true, yes, get a new one!

This is my doctor visits

Rheumatologist; every three months

Hemo; don't have one (my GP thinks that ITP is not serious enough to need one)

GP; dont see him for 12 to 18 months

I have blood work every six weeks for the Meth, results go to the Rheumatologist

In Australia you can't see any specialist doctors without a referral from your GP.

My thought (and thank you for that schedule):

Rheumatologist - every three months is good.
Hemo - would prefer that you had one, but if the GP can manage it properly, you should be okay. I would hope that if your counts drop, he would see you ASAP.
GP - I don't see mine very often, usually only if I'm sick. The specialists handle everything else.
Endo - would hope you'd get a referral to one.

No prob on the schedule, lol Thanks for your thoughts on it, I value your opinion, all this Dr stuff is still pretty new to me so I just wanted to know what was normal for most folks.

Depends on my count. 30 or above, never. 20-30, at least monthly. Below 20, all the time. Below 10 I'm usually in the hospital.

When i was on the prednisolone it was every 2-3 weeks. I've been off it for over 2 years now and not taking anything else. my counts have been everything between 25 and 147 since then (although in the last 12 months it's been between 34 and 56, so i've sort of levelled out) and i see my haematology unit every 3 months - i have a haem nurse and a haem registrar and they alternate my appointments, so i see each of them every 6 months. they're happy for me to stay treatment free for the time being (although i'm being encouraged in the direction of danazol, which i'll be refusing!)

Seems as though everyone is different, but the more I think about it the more I am coming to the decision I need to find me a new GP, I just don't feel he is the best for me. It is not that I enjoy Drs visits actually I hate them, and I think my ITP is in remission for the time being it's just all the other issues I dont think he is doing the best by me

At the very least a second opinion is what I think I may do.

If you're not comfortable with that doctor, by all means, get a new one. Doctor-Patient relationships are very important.

Sandi is 100% right (as she always is). If you even have to ask the question, it's probably time to seek another option. What's the worst that can happen -- you can always go back to your current doctor.

I see my consultant or someone of his team once a year as an annual checkup to keep the 'Open-Ward' available to me.

'Open-Ward' means that I can ring the heamatology ward any time night and day and ask any ITP related questions or when I 'think' I see the signs and they then decide to tell me to go in for a blood test. When I get there, I have a blood test. The hour to wait if the count is low enough am admitted and given the prednisolone before my parents have got back home etc....

Once I have been discharged from the ward I have usually seen the hemo within the first week of being discharged. Then it varies because sometimes I have been given tapering instructions of a month before I see him next...

This time has been different. I think he is on annual leave or something because they quickly got me in and gave me the IVIG though I was concerned about his go ahead because he has been a little reluctant though it my normal treatment. That was in July.

I was 'discharged' to the Day ward a week later at end of this round of IVIG. My platelets had hit 5 so decided to put me on rituximab. I haven't actually seen my own consultant though am sure he was around one week though the staff seem to think he may be still on annual leave. I decided not to worry if I should be concerned about that or not. Leave that to them. I have seen a doctor each week to discuss tapering the steroids. But haven't had any result of the tests myself each week since the first week.

Being on here by the way has helped me to hugely relax over the idea of not knowing the count numbers. At one time I might have 'badgered' them for it. Where as now, the one doc told me that they are good. So I accepted it and last week I got told they weren't back yet. This was at the end of the the treatment that day. Yeh, am a little nattery because I don't know the actual number but am chilled out about it compared to what I would have been several years ago because of what I had read on here.

But back to how often I see my consultant/team Once a year minimum. When I have a drop I ring up and go in. I see him the first week of being discharged from the ward then about a month time then about 3 month time then about 6 month time then back to a year if it has gone smooth.

Thanks everyone.
I think also the fact that this is worrying me tells me that I need a second opinion.

Steve,
Sandi is an absolute legend and has been a great help to me but what you say is so true I can always go back to original Doctor if I want.
Rhiannon,
I also am having regular tests, every six weeks so I pretty much know what my count is but that is for another condition. One of the reasons I am doubting my Doctor is that he was the one that told me my ITP was cured.I didn't think there was a cure! He also doubted that the pain I was having was real and here I am on Methotrexate for RA.

Anyway I have a weeks leave soon so I will get a second opinion then.

Enough guys. I have one head and two arms just like everyone else. Thanks, though!

I agree with Sandi, I think it is in YOUR best interest to see a hematologist. Yes, a GP can certainly treat for ITP, but wouldn't you feel better knowing the person treating you is a relative expert? I love my GP, but they are GENERAL. ITP, though mostly not life threatening, is kind of puzzler. I know I trust my hema completely. I can't expect someone who has had minimal experience with this to really make me feel at ease and comfortable.

Wishing you the best!!

Thanks Mstrux,
I really like my GP as a person too, he is just a nice person but he is just a little relaxed about some things. I think my ITP is pretty serious because I tend to bleed a lot, no other symptoms just major bleeding, but my counts have been pretty good lately.

Sandi,
Didn't mean to make you blush, sorry about that LOL