I have had Lyme and coinfections for 19+ years(diagnosed).
I am having problems with extreme swelling all over.
I have muscle weakness from this and just LD & coinfections.
It is causing shortness of breath and I am not even able to shower.
I lose and gain anywhere up to 15 pounds in days.
I cannot work or barely take care of myself. I do not have high blood pressure.
I am diabetic and have Hashimoto thyroiditis. My heart rate has always been very fast, so that's not anything different.
I have been to my regular doctor and she is sending me to a cardiologist and GI doctor(for persistent diarrhea sporadically)
Thanks in advance for any thoughts or suggestions.
Posted by Lymetoo (Member # 743) on :
So sorry to hear this, orrn!!! Definitely get the heart checked out.
No other symptoms? Did she do a lot of blood work?
Posted by map1131 (Member # 2022) on :
What is your thyroid treatment for Hashimoto's?
I too have/had Lyme & long list of co-infections for 20 yrs. But the HUGE issue hiding behind these infections/symptoms was Thyroid disease and Hashimoto's for years.
Things greatly improved for me when I dug deep into the Thyroid disease world and learned the truth. I had been on the same thyroid hormone for 30 yrs. Education didn't happen until a few years ago for me. The Thyroid disease world is as crazy as the Lyme world. So sad!!!! The right medication for me saved me from he!!.
Please do some serious reading in this entire site above.
Posted by orrn71 (Member # 50137) on :
Lymetoo I have my cardiac appt later this month and I do have blood work to do.
Now to get the lab to work with me on payments as I haven't been working. Grrr...
map1131 Thanks for the information. I have had thyroid issues for over 22 years.
I am on levothyroxine 100mcg and my TSH was high so she upped it to 100mcg M-Sat then 150mcg on Sun.
I did take a T3 also, but my insurance wouldn't pay for it.
I am going to see about getting back on it though as I think I did better on it.
My levels seem to go up and down all the time. I do have a nodule in the right side of my thyroid that they are watching.
I opted not to have it removed last time they biopsied it as my levels are so unstable now as it is.
It also hasn't gotten any bigger for 20 years.
It is so hard to know what symptoms are being caused by what.
I am also diabetic which is mostly uncontrolled. I go from blood sugars of 42 to over 500.
Not good at all. This is all without diet changes really. Very frustrating!
I haven't seen a LLMD for over a year as I lost my job due to being sick and haven't been able to work since.
So state insurance, but of course no help with LD treatment.
Sorry! I didn't mean for this to be a "poor me" post.
I appreciate all the information that is here and the people that are willing to share their stories and knowledge.
Thank you so much for taking the time to answer and give me some ideas.
Posted by Garz (Member # 52095) on :
i have Hashimoto's disease also and am managing my own combination T3 +T4 combination treatment.
this is possible via online pharmacies for the T3 ( Triomel brand from Turkey - well known and quite reliable) and not expensive approx $14 for 100 tablets of 25mcg
I also do periodic testing of the main Thyroid hormones TSH, T3, T4 etc which is also quite affordable - around £50-60 per test in the UK
i found the thyroid information here a good balance of detailed enough to be useful and still easy enough to comprehend.
i was stuck a couple of years ago and i decided to focus more on the thyroid side of things after reading Horowitz latest book where he states his Lyme patients often do not get better unless their thyroid hormones are restored to the ideal range ( and he is not talking about TSH)
Posted by Lymetoo (Member # 743) on :
Good info, Garz!
Maybe orrn could see about the T3 from Turkey.
Posted by orrn71 (Member # 50137) on :
Yes Thank you Garz!
I will check into that. I do feel like I am still very "hypo" when it comes to my thyroid.
Thanks for all the great information!
Posted by Garz (Member # 52095) on :
I have been asked for information on Tiromel so thought it might be helpful if I post it here in case anyone else would like it.
Basically, they sell generic versions of medicines that are no longer protected by patents. There is also a page here reviewing the various online suppliers – the one in the link above came out as well recommended.
i would encourage anyone considering this path to learn as much as you can about the thyroid conditions and if your primary care doctor will not prescribe the suitable medication you will at least be in a position to get yourself tested and self medicate with a suitable combination if needed.
combination therapy with both T3 and T4 medications is quite feasible at home.
for example - I currently take a combination of around 50mcg of levothyroxine 1x per day ( T4 prescribed by my GP) with 1x Tiromel 25mcg in the morning and 1.5 x 25mcg of Tiromel in the evening.
this seems to put my free T3 and T4 in about the optimal range ( but be aware that dosing is frequently quite different from person to person so don't take my doses or anyone else's for that matter - you need to get tested)
I worked up to this T3 dose gradually - testing every 6 weeks or so and adjusting as needed. __________________________
I should add i am not advocating other people follow this path.
I do however acknowledge that it is often very difficult to get proper thyroid disease medical treatment in many countries.
And that those with chronic illness and Lyme disease, in particular, may not do well on conventional T4 only medications(ref Horowitz - "how can I get better")
do your own research and tread carefully.
Posted by map1131 (Member # 2022) on :
orrn, you can get Liothyronine genetic T3 from many pharmacies using Goodrx coupon for a fairly cheap price. Skip doing it thru your insurance co. I've done it before when my insurance refused paying for it.
Ex: Liothyronine 25mcg 60 tablets for $22.31 at Walmart with GoodRx coupon.
Lyme folks with thyroid disease need T3 hormone for survival. It's the energy hormone. For whatever reason many Lyme folks bodies don't function (image that) at converting T4 to T3.
Also Lyme seems to take our T4 and convert it into RT3 (reverse t3). If you have RT3 test done and your lab range is high, you will continue to be hypo and your Hashimoto's lab will continue to be sky high.