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Hughes Syndrome APS Forum

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I need some advice on what type of doctor I am looking for

becca10 profile image
6 Replies

I have been looking at lists of doctors on the site APS Foundation of America, and have found several that are fairly close to my home, within 3 or 4 hours which I am willing to drive. but the ones they have listed or either Hematologist or Rheumatologist. I don't know which one I should be looking at. I have been to both, I have seen the Rheumatologist since I have been diagnosed with Fibro. Any suggestions which I see be seeing for the APS dignosis I received?

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becca10 profile image
becca10
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6 Replies
MaryF profile image
MaryFAdministrator

Hi, I don't know about the organization you mention only the link I gave you previously, I would be tempted to get in touch with one of them off the list to find out who they suggest nearer to you: apsaction.org/

You also when you do see somebody need to be firm about your inadequately treated Thyroid, probably masquerading under 'Fibro' umbrella and also make sure your levels of B12, D and iron are looked at. Other members of course may have actual suggestions in your area. MaryF

becca10 profile image
becca10 in reply to MaryF

Actually, I found the organization through the site you gave me. I will be very firm with who ever I do eventually see about the Thyroid, B12 , D and iron are looked at very closely. I will certainly keep you up to date as to what happens with this.

Becky

MaryF profile image
MaryFAdministrator in reply to becca10

Good, and also remember that in the USA it may be possible to request a trial of natural desiccated thyroid, if your current medication is not up to the job, as the Synthetic is normally only T4 and most of us need a mixture. Keep well, and let us know how you get on. You may find others on here have been successful about this.....let me know if you get stuck and I may be able to find some USA Thyroid contacts for you. MaryF

becca10 profile image
becca10

I certainly will keep you all informed as to how my search is going and if I get stuck I will also let you know. You have all been so great in helping me so far. I feel like I really know you all personally and the support I have gotten from everyone has really made me feel so welcome to the group. I can not tell you how much I appreciate it all.

I have written down the information on the natural desiccated thyroid to discuss with my doctor when I go to see her either this week or next week when I can get an appointment with her.

Thank you again MaryF for being such a huge help for me!!

Becky

There are APS specialists listed at the following sites; hope this is helpful.

APS Action

apsaction.org/

Stop the Clot

stoptheclot.org/learn_more/...

APS Awareness USA

apsawareness.com/

becca10 profile image
becca10

I have looked at the site apsaction.org/ many times and have contacted a few of the doctors listed. Some have contacted me back and some have not. The ones I am really interested in, are really too far away from where I live of course.

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