More problems with LLMD; need feedback.

Ok, here's what happened: She tested my thyroid (T3, T4, etc., etc.) then put me on Nature Thyroid.

The dose was really low, and I ended up with hypothyroidism so severe I had to go to ER, and could have gone into congestive heart failure. I was completely nonfunctional. The only thing I still did was feed the dogs and eat popcorn and peanut butter etc. I could no longer drive or go to the store.

I had already asked for a retest, which she should have known I needed.

The dose was so low, it was equivalent to 1/4th of the Synthroid I was already on, and I already had hypothyroidism. Yes, I know about Synthroid, and am going to try to find something else, but obviously, the Nature Thyroid didn't do it, although as I said, the dose was really low. And I also know you can't compare the two in the strictest sense, but that's what I came up with from doing a bit of research.

Bc the ER doc. wasn't sure what dose of Synthroid to put me on (he put me on 100 mcgs), and bc I was so, so sick, I ended up self treating.

When I went to the ENT doc (otolaryngologist) who had done my thyroidectomy, and he saw the ER results, he was so shocked, his face turned red, and he looked at the floor. I've known him for a long time, and I had totally forgotten that he was a viable option for treating the thyroid (not on ER basis though). He was POed at my LLMD, which doesn't exactly help our cause. I was kind of shocked just by his reaction.

There is noone else in my state; well, there's one other LLMD, but he is super expensive, and has extremely complicated protocols and a crappy PA.

Right now, I'm continuing with her treatments, bc without them, I get terrible BABS/BART symptoms.

She uses Labcorp, I guess bc it's cheaper for the patients, but all my Lyme and cos tests were negative, though other types of tests were positive.

I have a history of C. Diff., and she has me on Azithro. and Rifampin, plus herbs. I'm having bouts of diarrhea, although they may be unrelated to the abx.

Margaret

Hi Girlie,

My thyroid levels were already low.

She tested me last Fall, and the last good day I had before the ER was right around Christmas.

She had me on 16.24 micrograms of Nature Thyroid. All I know is the ENT doc, who is familiar with Nature Thyroid, was pretty upset. He knows all the thyroid medicines, and is willing to put me on Armour, but is deferring to the Endocrinologist (appt. in June).

Plus, she (the LLMD) never had me retested. So, being organized is not her strong suit, but she should have known to put me on a higher dose of thyroid, bc she knew what I was on at the time, which was 100 mcg of Synthroid (which was already low).

I am now on 150 mcg of Synthroid.

When the ENT doc took my levels, he said they were close to normal (and that's after I treated MYSELF, ha ha, with old Synthroid).

My TSH was in the 17 to 19 range in the ER.

I'm still having several horrible days a week, but I think that's from the Bart/Babs combo--hot sweats, flu symptoms, et. al.


Margaret

Margaret are there any highly thought of LLMD's or LLND's in nearby states?

You have been too sick to continue with status quo. If there is another Dr you could see that would allow phone or skype appointments after the initial visit?

I could have done more gift certificates. You need more nutrition to support all that your body is going through.

It is terrible what happened to you, M! That thyroid problem was horrifying! But if you are happy with her treating lyme and co, I think you should keep her just for this, since you don't have other options. Follow up with the endo for your thyroid. THat way you have a good cover for all of your medical issues.

Of course if you feel up to it, you can always go to a different LLMD, but for now, since traveling is difficult for you, I would stick with her. Just make sure YOU are in charge, since the office is so unorganized. How are you feeling besides this concerns you have? Do you feel any better?

I am on Synthroid too, yes, I know, I've heard everyone panics when they hear the S word LOL
But it works, I have been on it for 9 years, and I feel well. I can't function without it. Someday when I will find a good endo, I'd try the Armour or whatever is called, but for now, it is more important to stick to the right dose of a med that has worked for me, than to play around with medicating myself. I need this med! Everything goes haywire without it.

Post Edited (Simela1) : 4/29/2015 11:13:21 PM (GMT-6)

You could bring it up in a nice way BUT ONLY IF it is eating you up inside LOL

I find most docs will never acknowledge they messed up and you may create animosity between the 2 of you, which sure won't solve anything.

My LLMD won't do anything besides treating for Lyme and co. And maybe that is why. Maybe it is too much for many LLMDs especially if they themselves had/have lyme, to keep up with all this. Which is also the case with my LLMD--he also had/has lyme. Maybe we expect a little too much from LLMDs that were themselves affected by this. Also, some docs are wiser and more sharp than others. Yes, she messed up, but you need her on YOUR side. She may get defensive and make even more mistakes going forward, if she feels nervous around you.

I would say something like: Gee, doc! What do you think happened with my thyroid problem? Do the med that you put me on, usually work for most people? Maybe it didn't work for me because my thyroid is out?

That way she won't feel like you lost confidence in her and she will likely be more careful in the future :) I do think your main problem is babesia right now. Here is an excellent video by dr. H talking about how to differentiate the co-infections. I think you are hitting babesia with what you are taking and you are herxing. Here is the video--I hope it helps--it sure helped me:

https://www.youtube.com/watch?v=O9a-2Nb2sbk

Post Edited (Simela1) : 4/30/2015 12:51:02 PM (GMT-6)

I hope that watching the video will be giving you some answers. Caughing and shortness of breath can also be a sign of babesia. Asthma-like symptoms can be caused by a swollen thyroid glad but you don't have one, so I'm not sure if it's related to your thyroid issues or not. Maybe someone else can be more helpful. If your asthma is just a asthma-like symptom of one of the infections, it should resolve with treatment for Lyme and co. I don't know your history--do you know which came first? Lyme and co OR asthma? My son was diagnosed with "chronic sinus infection" that persisted for over a year. It went away with treatment. That's because he didn't have it-I argued with the docs but they didn't get it. It was a symptom. It was not a medical condition standing on its on. And the list could go on...

Post Edited (Simela1) : 4/30/2015 5:27:55 PM (GMT-6)

I sure hope you can find some answers Margaret. I'm sorry you're going through such a rough time. Hang in there.

((((((HUGS)))))

My youngest son and my youngest daughter got the croup too. You know I have always watched them because they were born after I got infected. Hmmm. I don't know what to say. I wonder if you were born with Lyme and co and made you have respiratory issues... I don't know if they were born with the infections from me or not. They developed normal. My older kids didn't get the croup... Odd that you got it and both of my little kids got it but not my older kids.

Croup is believed to be caused by a viral infection. But ticks carry viruses too. Arrrrrrrr. I don't know what else I can add on this except maybe asking rowing mom if her daughter ever had croup because she had congenital Lyme and co. The way they treat croup is through steroids (if it's bad) or just over the counter anti-inflamatories. Were you treated with steroids and recover from croup or you were not treated and you were left with a respiratory problem?

Post Edited (Simela1) : 5/1/2015 10:33:00 PM (GMT-6)