Just got back from rheumy appt.


Just got back from rheumy appt. I hope I don’t sound like a hypochondriac. It’s not that I *want* these illnesses, BUT it would be nice to get the truth from a dr. once in awhile. I don’t really know if she didn’t tell me the truth though. I asked to have tests for Sjogren’s, Scleroderma, Erythromelalgia and Lupus. She said she tested me a year ago, but she never told me she did. I asked her if I could still have one (or more) of these a year later and she said no. Does that sound right? Also, she down-played Raynaud’s. Again, I’m not trying to over-dramatic, but come on, everybody is different and things affect everyone differently. I told her I have pain with it and feel colder than normal and she brushed it all off and told me that’s nothing and to wear gloves. I hope I’m done with her because she’s the only *good* one where we live. She’s sending me to a hand plastic surgeon because there’s no hand surgeon here. I have fluid in my wrist because of a break 9 years ago and I told her it’s affecting my quality of life. There’s no guarantee this other dr. will be able to remove the fluid. I’m just pissed because I’d like something fixed for a change. Damn it! Sorry for the rant. Thanks for listening to me.

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Diane 3 years 0 Answers 477 views 0

Answers ( No )

  1. I'd travel for a better doctor. I'd make her show you the test results from the previous year…

  2. Thanks Julie and I should've made her, but she was in such a hurry to get to the next patient and I shouldn't make excuses, but I feel like I wasn't prepared for what she said. In shock, I just walked out till I remembered what she started to say. Her recep then went to ask her and told me it was about the hand dr. I wish I could afford to go back to MI. I'll have to see what happens in the near future. Also, she charges $70 or $75 to copy 1 page of test results so I didn't get a copy after the previous visit. Argggg!

  3. Good doctors are out there but hard to find. I finally got in to one here and he was do fantastic that it made me realize that I was being blown off before even though I didn't feel like it then.

  4. I'm so glad you found a good one, Alesha. 🙂 sounds like a keeper. Unfortunately, we don't have too many rheumy's here and she was highly recommended. I also have to get a referral for each specialist, but I might just do a search to see if we have any new ones here. I highly doubt it though. Sorry to sound so pessimistic, but this isn't the first time I've run into a dr. who seemed to care in the beginning and then let me down.

  5. As a suggestion, it may be worth getting your thyroid checked if you haven't already. When mine is low I feel cold more and that was what originally caused my raynauds.

  6. Thanks Becca! I'm seeing a naturopath and we'll meet again on Dec. 15 to go over a natural thyroid med. I showed her my results which were negative for a thyroid problem, but after she listened to my symptoms she told me she has other patients who go through the same thing and test results are negative too. I hope whatever med this is will help me through this. I don't sleep well at all either. I pretty much have all the symptoms of a thyroid problem.

  7. There is no positive or negative test for thyroid problems its all about the numbers. Do you have your blood test results that include your TSH levels and t4 levels? I may be able to shed a little light on them as it were.

  8. My internist requested the lab work and I see he didn't have TSH tested. I don't get it! Why wouldn't he have me test for that? T4 free is 8 and normal looks like 8-21 and T3 free is 4.5 with normal at 3.7-6.5. I'm going to have to see if the naturopath will send me for TSH and then I'll pay out of pocket if it's not too expensive. Otherwise, I have to wait 3-6 mo. for my GP to send me in order for it to be paid for. Ugh!

  9. TSH is essential for checking thyroid function. I'm seriously unsure why your Dr wouldn't test it if checking your thyroid. Your t4 may be in lab ranges but most people benefit from having it at 18 and above. Without seeing your TSH I couldnt tell you for definite but you may have subclinical hypothyroidism. Basically it's a very mild version of hypothyroidism and many Dr's choose not to treat it unless you are very symptomatic. When you get your TSH tested, the lab ranges are usually around 0.4-4.8 but optimum thyroid function is usually with a level of between 1-2. If you are anything above a TSH of 5 and are symptomatic, I would ask to trial a 25mcg dose of levothyroxine which is t4 in pill form. Just to see if it helps to alleviate your symptoms. I hasten to add I am not a doctor, I speak from personal experience.

  10. Thank you sooo much Becca for trying to help me. This is from Sept. 2015: TSH 2.14, T4 free is 9 and FT3 is 3.4. April 2016: TSH 1.18 and no T3 or T4 checked. This was by my previous GP. Sorry, but I now see TSH 1.04 for Oct. 2016. I was so mad I didn't look above to see Oct. TSH. My internist sent me for blood work in Oct. 2016. I'm going to talk to my nautropath first to see what she has. I really want to go natural now if I can.

  11. From what I can tell from those bloods you may be subclinical. Your ft4 and ft3 are in range but lower than they should ideally be. But your TSH is around where it should be. Like I said before, I would ask to trial on a 25mcg dose a day of levothyroxine. Just to see if it helps you feel better. Your Dr should do blood tests earlier than normal if you request it due to feeling symptomatic. I believe a naturopath would prescribe natural dessicated thyroid. It usually from a cow or a pig. Hopefully this information has helped somewhat. If you have any questions feel free to inbox me.

  12. Thanks so much Becca. The reason I have to wait awhile for some tests is because we live in Canada and they'll only pay for tests done at a certain time. I know I'm not saying that right. For example, we're allowed an a1c test every 6 mos. unless a dr. has a specific reason for the test to be done every 3 mos. This is the way it is here. I'll have to ask my naturopath for levo. and if she can't prescribe it, I'll have to make another appt. with my GP. I may p.m. you another day. Thanks again. JMHO opinion, but i think I have a thyroid problem. I have a lot of the symptoms, unfortunately.

  13. I believe the Dr's have a similar policy here with the NHS. But the Dr should retest earlier if you are getting worse. I am meant to be tested every 3-6 months but I recently have been getting tested every 6 weeks due to being out of the lab ranges and needing dose changes. Can you not tell the Dr your symptoms have been worse and you would like to check again? I've had mine tested 2 weeks apart before due to my symptoms.

  14. Demand better treatment. I'm very new to this condition. But I saw my Rheumatologist today (3rd visit) and she is truly compassionate. She has run labs 4 times to confirm scleroderma. She did mention gloves today but I'm also on a med to help blood vessel dilation. Hoping you get answers soon.

  15. I don't know for sure if I have any of the 4 which is why I asked her to test me and then she said she already did. I told her symptoms were worse and gave her examples and then asked if it was possible to have any of these a year after she tested me and that's when she said no. I'm not going to her anymore. I was pissed all night long. Going to try first to get a copy of the labs from the lab, but I highly doubt they'll let me have them. Then going to talk to naturopath and see if she can get them. If not, going to ask GP after the new year if she can get them for me. Ugh!

  16. Thanks Amy, but I can't demand anything here. I did that once and got dropped by a GP. 🙁 Please look at what I wrote to Becca above. All I can do is try. xo

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