Hidden thyroid issues?

[DolceVita]

Hi all!

I'm new to the board, decided to check in on CFS research and treatments and what not. I'm 25 and have had CFS for 2.5 years.

I'm curious, has anyone else's doctor ever tested their reverse T3 levels? All of my standard blood tests were normal and all the standard doctors ignored my problems, didn't believe me, the usual bit. This includes the standard tests they do for thyroid (T3, TSH); all within range. But I found this medical clinic in Los Angeles that specializes in CFS among other things and they tested my reverse T3 levels which after doing some reading is a test that almost nobody does (and my GP thought it was all just bullcrap when I told her about it). Apparently the normal range is 90-300 and mine was at 550. So my doc started me on bioidentical hormone therapy and I started taking T3. And although it's been really slow and it's been almost a year now, my reverse T3 is now down to 28 and I've improved from being almost completely bedridden to at 50% capacity now. Granted, I've been taking other supplements and getting gamma globulin injections, but it's interesting that an actual biological marker changed as I've been improving. And to clarify, nothing is wrong with my thyroid so it's not exactly a thyroid disorder.

Anyway, phew, sorry for the long explanation, but I'm really curious if anyone else has had experience with this? I found this link that kind of explains what it is if anyone's interested: http://www.stopthethyroidmadness.com/reverse-t3/

Ok, that is all. Thanks for your time!

[neil25]

Hi there, im 25 and i've had cfs for just under 2 years now. I've had my thyroid tested numerous times but its come back normal. I'm not convinced that what your saying is a big problem otherwise it would have be tested by all doctors and not just a cfs clinic. I think people just want to look for the tinyest thing to help when they have cfs. I'm glad your getting better but im pretty sure its not down to the thyroid.

[DolceVita]

Right, like I said all my standard tests came back normal too. The reverse T3 isn't something people generally check. If you look at the link, it describes RT3 as something the body produces when it's in a "protective" mode to keep you from overexerting yourself and letting your body heal itself (at least, as I understood it). High RT3 prevents normal T3 from binding in your cells (T3 binding is the "normal" state to put it simply) and acts in its place; high T3 is partially responsible for that tired, sluggish, unwell feeling you get when you are ill. As my doc explained it to me, sometimes when our systems crash (like in CFS) the RT3 goes up but then the mechanisms to properly reabsorb it are broken and need some help.

I am not suggesting it's all in the thyroid, I don't think I ever said that. I know there are a whole host of things that are wrong with the body. I did say though that this ISN'T indicative of a thyroid problem per se. I am just curious if anyone else had their reverse T3 levels tested. It might be worth looking into. Considering there are no cold hard facts on how to treat CFS, I'm not too quick to put much faith in what "all doctors" do

[neil25]

I appreciate your post. I just think its so hard to get my doctor to test for stuff like that. If i ask him he'll just shoot me down and ask what the hell i am talking about. I showed my doctor about an article on the blood ban in the uk and his answer was this is only a precaution there is nothing wrong in your blood. I'm fed up with going to see ignorant doctors so it's almost impossible for me to get this Reverse T3 test done. I wish they find stuff in standard tests would make it a lot easier to get testing and treatement.

[DolceVita]

Would it be at all helpful to print out literature on this and show it to him?

I don't know how difficult it is to switch doctors where you are, but it may be a good idea to consider finding one who is more open to trying new things perhaps? Of course, I don't know anything about your situation, just a thought Ugh, been there! It's SO frustrating when doctors don't listen. Most don't know about this reverse T3 thing, and supplementing with bioidentical T3. Who knows maybe it could help people.

[neil25]

I'm not debating the fact that reverseT3 is not important i think it is. The only problem is convincing doctors. Ive been to 3 doctors and not one of them is willing to test me for more stuff. If i asked about the reverseT3 they would probably be ignorant about it.

[susy]

I'd like to know what doctor or clinic you saw in LA that has been helpful.

I am actively looking for someone to help me, because I'm really sick. It sounds like you are talking about the Holtorf group in Torrence.

At this point I'm looking for any leads in the state of CA to find a good doctor.

I think you are on the right track with thyroid issues and Stop the Thyroid Madness.

Susy

[DolceVita]

Yeah, I go to the Holtorf Clinic! They're great. They believe in combining alternative and Western med, which I think is just about the greatest thing ever (and is SO unusual for MDs). Couldn't sing their praises more

It's a bit pricey as they don't take insurance on their own and you to pay up front. But they're technically out-of-network and you can still submit insurance claims for them. But I think they're very much worth it bc they're willing to test for everything under the sun (if it applies to you of course) and they really get that CFS is legit.

And they do phone consults and can mail you everything if it's hard for you to go there I think.

Is it obvious how much I like them?

[alicewoolf]

The Holtorf clinic sounds great. I just wish there was something similar in the U.K. does anyone know if there is? Just a shot in the dark really. As Neil rightly points out, doctors here just don't take cfs seriously at all. It's such a struggle to get them to do certain tests. and it,s either antidepressants or natural supplements which can help but are simply not enough on their own. I'd like to try low dose naltrexone or Nimodipine but cant find anyone to prescribe them to me.

[DolceVita]

Yikes, that sounds awful. To be perfectly honest, 95+% of doctors here are exactly the same way. I'm just paying out of pocket at this point for this specialized treatment and hoping for a chance of getting reimbursed by the insurance.

[lili2701]

I also have thyroid problems, I have had hashimoto's but my antibody levels have almost got back to normal now, just by eating healthily, my doc was impressed as it happens rarily apparently. Anyway as my symptoms persist, I have finally found a doc who is willing to give me a treatment, I'll start next month with very low dose. She will also check my T3 and T4 through urine, dunno what that means.. and other hormones, cortisol etc.. I really believe the thyroid plays an important rold in CFS, so many people have been saying that they improved on a thyroid hormone treatment.. there are more tests to carry out then TSH, T3 or 4, there are so many symptoms linked to hypothyroidism, also taking ur temperature in the morning when u're still lying down can be a good indication of hypo..

[*Emerald*]

Neil, where is your nearest M.E clinic?