Here We Go

[debber]

I went to the doc here to at least get blood work here where I live in Virginia. I moved here last November. My doctor who I've been going to is I Indiana and I do have apptmt w her on April 10, next Friday. I can't wait to go and yes, I'm driving all that way and ins doesn't cover her but I don't care I will pay.

Well, I go to this general practitioner and she gives me this speech about how the desicated meds are unbalanced compared to prescribed like levo. I told her I was on levo and it did nothing for me and still had the symptoms. She said she can't prescribe any of the desicated meds as they are not regulated. She said let's try the Levo again. I told her I didn't think it was good idea to take me off nature thyroid and after coming off my armour, my body can't take another jolt. She said let's get blood work done and see where I'm at. She said again I can only do the regulated meds lol. I'm not doing this you guys and putting my body thru this. I was on levo a high dose and told her this and it seems like it didn't matter to her. I know my body and what I've been thru. Here is an example of all doctors are not createdv equal.

I will be taking my blood work to my doc in Indiana and she is not covered by insuranc either and will pay out of pocket and worth every penny to me. I get my results next week and will post.

Am I missing something here or being stubborn????

[humanbean]

Most NDT has 38mcg T4 to 9mcg T3 per one grain (65mg) tablet.

Levothyroxine is 100% T4 and 0% T3.

I know which one I would describe as "unbalanced" and it isn't the NDT!

You aren't missing anything. The doctor who wants to put you back on levo isn't interested in your health or how you feel, she is only interested in making you tow the line and stick to guidelines that were written to keep pharmaceutical companies happy. She probably gets kickbacks from the pharmaceutical companies who make levo. If the doctor was truly interested in your health then she would pay attention to your experience of being on levo previously. The fact that she (metaphorically) put her hands over her ears and sang "La la la la, I'm not listening" in a loud voice while you spoke, says to me that you don't have to listen to her!

[jezebel69 in reply to humanbean]

Brilliant answer humanbean - said it all lol

[humanbean in reply to jezebel69]

Thanks jezebel.

I do worry sometimes, about posting my little rants, in case I go over the top!

[debber in reply to humanbean]

Thank you Jezebel and Humanbean. You guys rock!!!

[greygoose in reply to humanbean]

It's good to go over the top sometimes. These stupid, ignorant, arrogant, unfeeling, bigoted doctors get us into such a state, we just have to get it off our chests.

Go for it, HB, let's hear it like it is!

[debber in reply to greygoose]

I know Grey. It's really disturbing to me as how people, great people, that are going to the doctors and being told this. Why don't the doctors just tell them to go audition for The Walking Dead as that is what they are doing. It went right over her head as I was on Levo for years and I had absolutely no change. When I first took it my energy picked up a little but I fell back into the fatigue. It was like they gave me a carrot, a small taste and then it got taken away. I'm going to tell her in an informative and nice way how I feel. Our health system stinks here and that is why people are unhappy and struggling to function as many are walking around not knowing. This is serious stuff. I struggled half of my life with this. I'm going to write an article about this and share my story as people need to know. Thanks Grey. You rock!!!!

[greygoose in reply to debber]

Of course it went over her head! She's got her own agenda and she's not even listening to you. It's not about your health, I'm afraid, it's politics!

You can tell her if you like, but I think you'd be wasting your breath and energy. Much better to use that energy to take charge of you health.

But you're right, people ought to know. But whether anyone will listen is another kettle of fish. Most people still believe that doctor knows best. Whatcha gonna do?!?

[debber in reply to humanbean]

Thank you Humanbean. I can't believe this stuff occurs, but it is and what is horrible to me is the people that walk in there and settle for it. I've learned a lot from all of this from my doctor (who is awesome by the way and has hashi and knows first-hand). I also know my body and I don't care what kind of education she has or whether she carries a doctor degree as there is nothing that trumphs how I am in tune with my body. I will use my insurance to get the lab work (pay nothing) and get the results printed out and I will be taking them to her and yes, it's a 10-hour trip and I don't care as it gives me my life. Not all doctors are created equal. I can't believe they even let those doctors practice. I just point-blank starred at her like, "Are you for real!" Lol. My face told it all. I did not let her know my hand as she told me she is going to run everything on me and I asked for that, too. I told her I want the whole panel done, T3, T4, Ferritan, Iron, Hormones, everything. She said we will get his done and then see where my levels are and she said we can try the levo lol. She can write the prescrip all she wants as I won't get it filled and I won't be back to her. Yes, I have all the right in the world to go to who I want to. Does she think I'm stupid enough to be put back on levo!??? LOL

Thank you for breaking the difference down between the two. You know, my body knew it too when I was on the levo as it did nothing for me and maybe it's suited for some people, but it wasn't for me. I kept going back to the doctor too (six times) telling her it isn't working, it isn't working and she kept telling me it takes time. I was on it for two years lol and it still didn't work. I decided to find another doctor one that would listen to what I said and one that was a specialist in this and knew what I was feeling and I found her.

And yes, I will never go off my thyroid med again ----- NEVER!!!!! What a lesson to me!!!! I went off of it as I wasn't getting my shipments and kept calling and calling and I wasn't the only one but I should have been calling my doctor but I was in Virginia. I should have called her. She told me she was getting all kinds of people reporting the same thing about not getting their meds.

Thank you from the bottom of my heart!!!! Debber

[helvella Administrator]

One of the very first lessons I learned regarding thyroid was that the assumption all patients would be fine on levothyroxine-only was contradicted by numerous patient experiences.

Yet we read your absolute statement about desiccated thyroid that seems, to me, quite as mis-guided as universal levothyroxine monotherapy. Even if it were true for a considerable proportion of people who need thyroid hormone, it most certainly is not applicable to everyone.

We often see the late Dr Lowe quoted as a case for liothyronine monotherapy. We see quite a number of people who simply do not tolerate desiccated thyroid - sometimes not at all, sometimes simply needing additional thyroid hormones to get their right balance.

[PinkNinja in reply to helvella]

I completely agree. After trying NDT for a considerable time and not being able to increase my dose high enough to become well (4.5 grains was not high enough but gave me side effects), I am now finding t3 monotherapy works quite well for me. My GP was nothing short of shocked when he saw how much better I was.

[debber]

Yep, she is wrong as my body tells me so. Why would I want to put myself through that again? I asked her that, too. She didn't say anything. You should have seen how she lectured me, too; like I was bad or something lol. I'm so thankful that I have the option to go my doctor as if we didn't we would all be walking around like zombies. We could audition for the Walking Dead. I think it's a real disgrace that this is going on.

I know she is wrong as I was leveled and I knew what it was like to really feel good and have myself back like never before and I'm striving to get there again and I'm not giving up. I struggled with it my whole life until I got in my 40s and I'll be damned if I'm going to do it the other half of my life. I didn't know any better but I do now. I pray for the ones that are in those shoes now and hope that they can be educated like I have been.

Thank you so much for your reply ReallyFedUp. I'm truly blessed!!!!

[Clutter]

Debbers, your doctor is missing something. Armour, NatureThroid, WP and Acella are in the US national formularly and meet pharmacological requirements so what does she mean by not regulated?

[debber in reply to Clutter]

I know Clutter, I don't understand either. I get my Nature Thyroid at the Rite Aid here where I live lol, right here in the US. She said it's a "not approved" drug. Lol. I've had this happen to me before with another doctor, the one who put me on Levo and I asked for different stuff and they told me there was no other lol. I'm happy that I didn't settle for that and went to another doctor. I swear, God was on my side running into my doctor that I have in Indiana. When I go back to get my results I'm going to let her know that the desicated is better and I really don't know what she's talking about lol by being not regulated and not approved. She said well, you might get one pill with more than the other pill lol. I'm going to flat out tell her what I know when I see her and what it does for me and let her know that I think it is disgusting that you doctors do this to people. I am going to tell her Clutter. I'm not sitting quiet.

My feel on it all is that they don't want you feeling 100% and they are only treating one little aspect of it in order for you to keep coming back and keeping the money flow. There are so many people here in the US that don't know about these other meds Clutter. I went to ER and the nurse didn't know what Nature Thyroid was lol. I had to go as I pulled my back out but I'm okay now. I just twisted a wrong way and caused spasm in my back. But yeah, she asked me to spell it twice. You guys got it going on over there I want you to know. I have had so many people tell me they are in Levo but they don't feel a difference lol I share what I know as I want people to not suffer. My doctor that said it's not approved, acted like she never heard of it either lol. She's full of crap Clutter. She's heard of it. I won't keep my mouth shut and I want her to know that I know my body and chose to be my own advocate and I no longer need her services and I am going to drive to Indiana and have an appointment on April 10th so I can get properly cared for what I need. I am going to write down the difference of what levo has and Nature Thyroid and let her know that it is better and also

what you said with being a US national formula and meets the pharmacology requirements and it has too as I get here at Rite Aide. I don't get it Clutter. What is her real reasoning!???

[Clutter in reply to debber]

Debber, Your doctor hasn't kept up with research or has swallowed Synthyroid's marketing bull, hook line and sinker. NDT i has to conform to pharmaceutical stands on potency and shelf life to be in the formulary.

NDT isn't licenced for use in the UK and isn't in the UK formularly but a handful of doctors prescribe it. Most members using it have to buy it online and self medicate.

[debber in reply to Clutter]

Hi Clutter, you should see what my Indiana doctor says about this. She is a genius when it comes to this and genuinely cares about people. She told me its in my bloodline as my mom is American Indian and very common too with American Indian and also the fluoride in the water when I was a kid. She thinks that is what happened. She also thinks I was overactive when a kid as I was super skinny and was so skinny was teased because of it. I went the other way now. There was one other she told me which hurts me tremendously and that is I could never get pregnant and it was all my thyroid and I didn't know it. I never took anything to not have kids. I went so many doctors and could never get an answer until I found her. I understand now. I want to get the message out to people. We are behind here. We have became an incompetent country here.

[debber]

If I didn't have that doctor in Indiana, I kid you not, I could audition for The Walking Dead lol. I'm serious Clutter, it's that bad. I went to so many doctors before I got my good doctor and I'm so thankful for her. I want to mention her name but I know I can't, but she is my heartbeat, my life line.