futurehope Posted July 23, 2009 Report Share Posted July 23, 2009 After years of having POTS and needing thyroid replacement (because I don't have a thyroid), I've finally learned...DO NOT RELY ON FEELINGS OF RAPID HEARTRATE TO DETERMINE CORRECT SYNTHROID DOSE.I've posted on here asking you all about your "normal" resting heartrate.I've kept careful track of my thyroid test results for years to see what they were. Normal TSH for me is between 1.5 - 2.5In the past, before acquiring my new knowledge, I would call the doctor and tell him I was feeling hyper and he would decrease my synthroid dose. I now know that the "hyper" feeling could have been from my POTS and not from too much thyroid.I had become more and more sluggish and lethargic because I was having my dose decreased because I "felt hyper".I probably have been hypo for three years. Never again.I have learned not to rely on "feeling" to determine the correct synthroid dose, especially since I have hyperadrenergic POTS. I will be using the results of my TSH test from now on, and will expect that to come out between 1.5 - 2.5It's difficult, sometimes, to tease out the symptoms and what is causing what. Is it thyroid? Is it POTS? I now know that my feelings are not as useful because the POTS itself causes hyper feelings.End of post. Hope I can help someone else. It took me years to figure this out. Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 23, 2009 Report Share Posted July 23, 2009 Good advice! A lot of symptoms of hyperthyroidism are similar to POTS. I also take Synthroid but my doctors does blood work every 3 months to watch my TSH level. I wouldn't go longer than 6 months without getting blood work done! Quote Link to comment Share on other sites More sharing options...
futurehope Posted July 23, 2009 Author Report Share Posted July 23, 2009 You make another good point. My opinion is that having both POTS and thyroid problems, I will make sure I'm tested more frequently than once/year.At what TSH level are you kept? Just curious. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 23, 2009 Report Share Posted July 23, 2009 I always feel best when my TSH is lower than 2. I don't ever go by symptoms tho, particularly not heartrate--which seems to be mainly affected by POTS. If my thyroid is swollen that is often an indication of hypothyroidism and need for adjustment of synthroid for me. It can be confusing though, and got very confusing during pregnancy (when I was not diagnosed with POTS). I've had doctors (and my own knucklehead father) want to reduce my synthroid dosage b/c of tachycardia. Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 23, 2009 Report Share Posted July 23, 2009 My doctor always tries to keep my TSH between 1.0-1.5 When it would go higher I started getting more symptoms. Increased heart rate is a side effect of Synthroid, unfortunately, but I found that about two weeks after increasing the dosage my body/heart rate tend to adjust. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 23, 2009 Report Share Posted July 23, 2009 I go by symptoms AND TSH. If my TSH is 1 or a 2, I won't mess with the dose. But if it is a 4 or a 5 and I feel like crap (either way, tired or wired) I'll bump up the dose to try and knock out my own thyroid production. I have Hashi though and its tricky that way. Quote Link to comment Share on other sites More sharing options...
futurehope Posted July 24, 2009 Author Report Share Posted July 24, 2009 Interesting, for those who responded, that you keep your TSH at 2 or below. Mine is 2.5.I'll be seeing another endo of mine next week and get her opinion on where to keep the TSH.Thanks for your replies.Oh, yes. I found out (the hard way), that I should "ride out" the increased heartrate after increasing the dose to allow my body to adjust. I noticed my heartrate is decreasing as time goes on. Quote Link to comment Share on other sites More sharing options...
heiseygirl Posted July 24, 2009 Report Share Posted July 24, 2009 do any of you feel that your thyroid med aggrivate your pots. i want to go on other meds but all the docs are afraid to change mine. Always have less symptoms of pots when not taking thyroid meds. had testing with dr.khranna in maryland to confirm pots go back in september to start figuring out what is causing it or what to do. Quote Link to comment Share on other sites More sharing options...
futurehope Posted July 24, 2009 Author Report Share Posted July 24, 2009 Heiseygirl,I believe it "aggravates" POTS in the sense that our systems are very sensitive to any changes, including changes in the dosing of synthroid. For me, when I increase the dose, I can expect a few weeks of tachy before I adjust. It took me years to learn this about myself.Still, the alternative is worse. I know from experience. Being hypo aggravates POTS too. Add to that, mental dullness, extreme fatigue and it's difficult.I do not have a choice. Whatever effect the synthroid has, I must adjust to it. I need the hormone.Like I said in a previous post, I will now rely more on my TSH rather than on what I feel. What I feel changes daily and changes also when adjusting meds. The big questions for me now are, at what range should I keep my TSH and how frequently to test? Many on here have said below 2 or 1 - 2 is where their TSH is. One of my endos is okay with my 2.5. I will speak to my other one and get her opinion.What, exactly, are you concerned about with your thyroid issue and your POTS diagnosis? Quote Link to comment Share on other sites More sharing options...
heiseygirl Posted July 24, 2009 Report Share Posted July 24, 2009 Heiseygirl,I believe it "aggravates" POTS in the sense that our systems are very sensitive to any changes, including changes in the dosing of synthroid. For me, when I increase the dose, I can expect a few weeks of tachy before I adjust. It took me years to learn this about myself.Still, the alternative is worse. I know from experience. Being hypo aggravates POTS too. Add to that, mental dullness, extreme fatigue and it's difficult.I do not have a choice. Whatever effect the synthroid has, I must adjust to it. I need the hormone.Like I said in a previous post, I will now rely more on my TSH rather than on what I feel. What I feel changes daily and changes also when adjusting meds. The big questions for me now are, at what range should I keep my TSH and how frequently to test? Many on here have said below 2 or 1 - 2 is where their TSH is. One of my endos is okay with my 2.5. I will speak to my other one and get her opinion.What, exactly, are you concerned about with your thyroid issue and your POTS diagnosis? Quote Link to comment Share on other sites More sharing options...
heiseygirl Posted July 24, 2009 Report Share Posted July 24, 2009 i did not take any thyroid meds for almost a year and had very little pots my numbers eventually got too high and had to go back on them about 6 months into them pots reared its ugly head again. My original specialist that diagnosed pots felt that the thyroid meds were causing my problems. took me off them then back on at a lower dose and said your betteer. not! See Dr. Khurrana in sept after he did testing to confirm pots. did pass the sweat test which is good. He said we will look over my blood tests. Every since i got sick in 2001 have had a high bilirubum count.. I also have Von Wilebrands a bleeding disorder. Very Frustated Quote Link to comment Share on other sites More sharing options...
futurehope Posted July 24, 2009 Author Report Share Posted July 24, 2009 It is really frustrating when you have more than one medical condition and you try to help one and you end up aggravating another. My opinion is, your doctors can look at your TSH numbers and determine if you need supplemental thyroid. I have determined that for me, I can't just go on "how I feel" since POTS tends to make me feel differently on different days.Hang in there. Just remember. You do need the correct dose of thyroid hormone as it affects many body processes. Quote Link to comment Share on other sites More sharing options...
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