Finally Seeing Hematologist Thursday

So I am finally scheduled to see the Hematologist on Thursday. I have been waiting a long time for this. I plan to take my old blood work with me so he can see it and compare with any new blood work he does. Do any of you have any suggestions for questions I might ask or important information I should give to him? I am very nervous about this appointment because I feel as though he i my last resort. I truly believe a trial of an anticoagulant would be a good idea for me and to get me off this beta blocker and methocarbamol. I have been on these two meds for a few months now and they seem to be not working as well anymore as I am getting increased migraines again. At first I wasn't getting any but they are back and seem even worse in intensity now. I want to make the most of this appointment and don't want to forget any important questions or forget to tell him anything. I'm not even sure what all to ask. I really hate doctors and get a lot of anxiety when going to them because I feel like they just think I am crazy.

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  • Remember your the patient and without you they would not have a job!

    Say what you have said above, bullet point your history, bullet point your questions. Start now, add to it when you think of something or get an idea from here.

    Do not be intimidated, take someone with you if you can for support. Its really hard to say everything, when you are so scared of the outcome, so believe in yourself. If need be pretend we are all with you in the room.

    Let us know how you get on. xxx

  • Before the appointment, write out your medical history in bullet points, and also mention any other relatives with similar, this will help you on the day, as we all forget things we mean to say. MaryF

  • Your not crazy. Remember to breathe. I know how you are feeling. I had a follow up appt today and felt I didn't do what I wanted although I had prepared. When I got to the office I had to redo paperwork for insurances and that always intimidates me because it brings all my history to the surface and I hate it. So the anxiety begins... good luck. I hope you do great. Let us know how you do.💪

  • I agree with what my colleagues have advised you.

    Dave

  • Hi,

    Today is Thursday. I live in Sweden so I am 6 hours before you if you live on the eastcoast of the US.

    Please tell us how it did go for you today when you did see the Hematologist!

    Best wishes from Kerstin in Stockholm

  • In waiting room as we speak

  • And?

  • They drew 12 vials of blood and he is going to compare my bloodwork with what I had in the past. Told me he doesn't think I will need to be on a blood thinner other than a regular aspirin daily. But depending on what the bloodwork shows he thinks I might benefit from some shots of prednisone to suppress my immune system response. I just don't think doctors here in the states are comfortable with putting anyone on blood thinners unless there have been documented clotting events which I never had. But then I don't know what counts as a clotting event. Other than my miscarriages, and frequent migraines I haven't had a DVT that I know of and only recently did the doctor say he thought I had had a TIA but he can only confirm that based on symptoms and not tests. So I'm still kinda in a limbo situation where I don't know what the ultimate plan is going to be. The Hematologist is going to look at the bloodwork. But his own nurse said her levels for APS are pretty high and he only has her taking Aspirin as well. He did answer all of my questions and confirmed that I do have APS. He explained how it can cause no problems for a long time but then "flare up" because of it being autoimmune and then symptoms go away as fast as they came. But because I have been feeling so bad recently that maybe the prednisone would help me. I am satisfied for now with the answers I have received and hoping the tests will bring even more answers.

  • So now you have to wait for the bloodtests.

    Has this Hematologist seen other HS/APS-patients? He is talking of Prednisone but not so much about Warfarin or a trial of LMW Heparin.

    Let us follow you please!

    Kerstin in Stockholm

  • I have reread a little from your erlier correspondence and by the symptoms etc I think you need Warfarin.

    Even if the antibodies will be negative (it is common they are) please ask him if you could make a trial of LMW Heparin to see if your symptoms get better and you also feel much better.

    Kerstin

  • I did ask him if he thought that would be a good idea and he doesn't seem eager to try that. I think the protocol here in the US is just different than other places. I believe doctors here have to have more documented clotting events before they will go that route. I have read some articles that discuss the different views that doctors have on the use of warfarin etc. Not all doctors agree about when to use it in APS patients. For now I am going to have to trust my doctors.

  • Hi.

    I hope you have a Specialit who understands this illness and who would be willing to let you do a trial of LMW Heparin.

    As we have said before, there are very few Doctors who understand that we have very thick blood and know HS/APS so the big issues for all of us is to find a Doctor who really have had patient-knowledge from different autoimmun illnesses (as they may go hand in hand like "cousins") and especially from HS/APS.

    Kerstin

  • Todd chick where are you located in the US? I agree withLlure, I think they are playing with fire. I had similar situation if any stroke symptoms should develop go to the ER immediately for help. Please keep us posted. May God be watching over you, Cindy in NJ

  • I realized I never updated this. The Hematologist confirmed APS and says I am high risk for stroke but because I have not had a documented clotting event he cannot put me on anticoagulation and the neurologist agrees with him. Just taking Aspirin and my migraine meds at this point.

  • Where in the USA 🇺🇸 are you?

  • Ohio

  • Some questions for you; as you have betablockers (or had) I wonder if you have got high bloodpressure? In that case it is important to remain on betablockers perhaps or some other drug for high bloodpressure. We should not have high bloodpressure with this illness!

    if you have some sort of neurological symptoms I think you should read or buy "Sticky Blood Explained" by Kay Thackray. I have it in pocket here in Stockholm. A really good book to understand our illness. Also good for relatives to understand how we feel.

    Also did you feel any better on baby-Aspirin? If your symptoms remain you should ask to try something stronger.

    Best wishes from Kerstin in Stockholm

  • Did you feel any better on Baby-Aspirin? Do you also have high bloodpressure?

    Kerstin

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