SO FRUSTRATED: I have went to a new doctor since... - Thyroid UK

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SO FRUSTRATED

debber profile image
39 Replies

I have went to a new doctor since my doctor I had has breast cancer. They have found that I need to reduce my medication. I am okay with that. But with the reducing of my Nature Throid, a quarter every two weeks, I have had terrible symptoms. I am tired, I am shedding profusely, headaches, I am very hot but yet my body feels cold, I don't want to get out of bed, and depression has set in. Why am I feeling this way now as when I was on the higher dose I did not have this?

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debber
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39 Replies
debber profile image
debber

And oh, this doctor has switched me over to Armour also which I have not taken it yet. I am concerned with switching over and reducing my nature throid with all these symptoms.

greygoose profile image
greygoose

Why? Because your dose is not too low, I would imagine. Did you get a print-out of the results? Or did you just take their word for it? Always, always get a print-out. You need to know exactly what was tested and what the results were. If they are only testing the TSH, then that is wrong.

debber profile image
debber

They have sent me the printout and I will post it on here. They said my thyroud hormone is low which is too much medication. I take three tablets of nature thyroid. I was on four tablets of 65 grams and I went down to three. But since decreasing I'm having terrible symptoms. My.body is cold but I am hot if that makes any sense. I am shedding profusely. I've lost over half of my hair and getting ready to shave it off and get a wig. I have headaches and no appetite. When I wake in morning my body aches. Depression has set in with all of this. I sit and cry now.

greygoose profile image
greygoose in reply todebber

OK, so they are only looking at the TSH. And the TSH isn't even a thyroid hormone, it's a pituitary hormone, and very unreliable! But, let's have a look at the print-out, anyway, to see if they've tested anything else.

Cheer up, there's always a solution. :)

debber profile image
debber in reply togreygoose

Thank you Grey. I'm setting up my login right now and I will get it for you. I was doing great on my dose that my doc who had breast cancer and now the new doc wants to reduce and I have been feeling horrible

debber profile image
debber in reply todebber

I know it's from reduction of med but will it level or will I continue these symptoms?

greygoose profile image
greygoose in reply todebber

If you are on too small a dose for you, then the symptoms will continue until you increase it again.

Angel_of_the_North profile image
Angel_of_the_North in reply todebber

That's wrong. Your thyroid hormones are Thyroxine (T4) and liothyronine (T3). If you are over medicated, these are HIGH. I suspect your doctor meant TSH which is NOT a thyroid hormone but is produced by the pituitary gland. It is almost always low when you are taking any form of T3 (as in Amour or nature-throid). You should not be dosed according to TSH, but according to Ft3 and Ft4. Just go back onto your old dose and feel well again.

debber profile image
debber in reply toAngel_of_the_North

Yep, Angel, she is dosing me according to my TSH count with is low, it is 0.10 and she is going off of that only. I have not had any difference in that count even with reducing it one tablet. She will have me off of it is what she is wanting to do. I see what she is doing. I am not doing it. I feel worst than I had ever felt. I was on four tablets and now I am down to three and I am not going any lower. I am ordering it online as that is the way to go. They are so uneducated here with this. When you take a nature dessicated med you can't go by the TSH and she knows that. I wonder why the pretend to not know that. Thank you so much, Angel, for the knowledge and now I understand why I feel so bad. They keep telling me I feel bad because it needs to level out. It will not level out as I had the same symptoms when I was not even taking thyroid med. I know my body as it's been through it. They give us no credit for that all. I tried to explain that to her nurse and she got mad at me. I guess I'm not supposed to have a say.

I LOVE YOU GUYS SO MUCH!!! I AM NOTHING WITHOUT MY FAMILY!!!!

Angel_of_the_North profile image
Angel_of_the_North in reply todebber

You need a new doctor - with a clue. And a doctor's office with a better attitude to their clients. That nurse is cruising for a bruising.

debber profile image
debber

I feel like stopping all my meds as I feel why take them when I have these symptoms. My other doctor got breast cancer and was everything to me. She is not well. I had to find another doctor.

greygoose profile image
greygoose in reply todebber

Well, that's not the solution, is it. It sounds to me like you just need to go back to your old dose, and tell your doctors to take a funny walk. Are you buying your own, or is it prescribed? You have to realise that they have no idea what they're doing.

debber profile image
debber in reply togreygoose

Well you were right Grey.

TSH. <0.010 ulU/mL

That is what it is.

She said it's low due to too much medicamedication. I take 3 tabs of NT. I was on 4.

Angel_of_the_North profile image
Angel_of_the_North in reply todebber

Buy extra from Mexico or Canada.

debber profile image
debber in reply toAngel_of_the_North

I'm going to do it. I seen it online and that is what I am doing. Thank you, you guys. I didn't know I could do that. You-all rock!!!!

debber profile image
debber in reply togreygoose

It is prescribed. You can't get here in states without prescription.

What do I do Grey?

greygoose profile image
greygoose in reply todebber

Can you not get it on-line? I'm sure a lot of people do in the US.

Other than that, all you can do is throw yourself in her mercy. She obviously knows nothing about thyroid, but you could try explaining to her that a low TSH does not, in and of itself, mean you are taking too much medication. You need to see the FT3 to know that. The TSH is bound to be suppressed when you are taking NDT, or any other form of T3. That's a law of nature!

debber profile image
debber in reply togreygoose

I'll look online and see if I can. I just know that I felt great on higher dose and now terrible. Everyone keeps telling me it will level. I'm not so sure about that as I was like this when not on thyroud med. It's so frustrsting and I'm so sad over it all. Why did they have try fix something that's not broke!??

My last blood result from May 18 2016 showed THE L <0.010 and that is the same result with one tablet decrease, so decreasing one tablet did nothing on that count.

My T3, Free was H 7.0

T hyroxine Free 1.8.

Those results were from May 18 2016 from my old doctor and four tablets.

This doctor just did Tsh and the same level came out with three tablets.

There was no change in the TSH count.

I will keep you posted Grey. Thank you so much.Xxxxxoooo debbs

greygoose profile image
greygoose in reply todebber

You're welcome.

Try posting on here to ask about buying NDT on-line in the US. There are quite a few American members, and someone will probably know. Replies by PM, only, please. :)

debber profile image
debber in reply togreygoose

Okay Grey. Thank you so much. I have family in UK and if I can get over counter there that would be great. I will try to see if Ii can find it over counter.

I just talked to nurse and she said they wsnt me start two tablets in morning.I'm not doing it. These symptoms I had when off of NT and reducing it is sending me down that road.

I will keep you posted. Thank you forhearing my cries. Xxxxxooooo

Debbs

108Optimist profile image
108Optimist in reply todebber

My tsh went to 0.14 when I self medicated for the first time with ndt and the doctor called me up to say there was something amiss with my thyroid. I laughed yea I know. I pointed out the raise in ft3 and ft4 at the same time and how I could go for a walk and had popped everyday. They were nice but the didn't get it. They scared me off ndt. I stopped taking it and watched my energy and poops aND ft3 ft4 slide away again. I retested, got the proof and started self medicating again. If it ain't broke don't fix it. Try to source your ndt online. I would even tell the doctor that I'm doing that because of their refusal to continue what was controlling your symptoms. Give them a copy of stop the thyroid madness and walk away head high. It's easy for me to say. Harder to do. Start accepting you know yourself better than your doc. That's where I'm at anyway! Take care ☺ x

debber profile image
debber in reply to108Optimist

I love you Claire. I will do it. I just got done talking to nurse and she yell at me for being on three tablets lol. Could you pm me at <email address deleted> YOU RICK GIRL!!!!

108Optimist profile image
108Optimist in reply todebber

Pm through here debber? just read the bit about armour aND you haven't tried it yet. Fair enough. It's on hand for emergency! What three tablets? You mean your normal nature thyroid dose? Do your best to be calm with them as want them onside for future. I always writeit all in email to them for my notes as well x

debber profile image
debber in reply to108Optimist

I'm note sure if we have PM on here. Do we?

I Will do that. Yes for NT or Effa.

I used to take Effa and loved it. It was the best!

108Optimist profile image
108Optimist in reply todebber

I will pm you here look out for a notification. I'm going to bed now so sorry if I don't respond today take care 😀

debber profile image
debber in reply to108Optimist

Okay honey. You sleep well Claire. I look forward to talking w you.

Nitey-Nite....

Clutter profile image
Clutter in reply todebber

Debber,

To send a PM click on the member's username and then click on Messages top right of the member's profile page.

To read a PM sent to you click on the red dot over your username and click on messages.

debber profile image
debber in reply toClutter

Thank you Clutter. You and Grey are the best! I will do that. :)

Angel_of_the_North profile image
Angel_of_the_North in reply todebber

Pm by clicking the blue person's name, then Message button on the upper right.

debber profile image
debber in reply toAngel_of_the_North

Thank you Angel. I didn't know that. I feel kind of silly lol

debber profile image
debber in reply to108Optimist

Are you on Armour Claire?

greygoose profile image
greygoose in reply todebber

What? NO. I don't know anywhere in the world you can get it OTC. It's even illegal in France! I meant on-line, you can buy it on-line without a prescription. I'm sure lots of American members do that, so post a new question and ask.

debber profile image
debber in reply togreygoose

Hi Grey,

I got online and found a few companies that have it. Is it the same stuff? I will be calling them today and I did send a few emails to see about it. I didn't know they had that online.

I also noticed that there is one that will be having Erfa back on August 16 2016. I used to take Erfa from Canada and it was great stuff and stopped as I couldn't get it any longer and that's when my old doc put me on Nature Throid. I sent them an email too.

I will keep you posted on what I find out and in the meantime I will post and ask here too.

Thank you so much Grey and I will keep you posted on how I'm doing.

The doctor yesterday never even got back with me and I dealt with her nurse on the phone just calling to tell me that she would run it by the doctor me requesting the nature throid instead to stay on it. I told her I was doing fine on my higher dosage and she came unglued with me. She got an attitude with me. I will be finding more out today when the new doc calls and I will be sure to tell her the TSH is a pituatary hormone and that I need all levels done.

I miss my other doctor so bad. I loved her so much. She told me she carried her phone in her bra and believes that is what gave her the BC. I remember her doing that too. God be with her!

Love Ya Grey!!! debbs

greygoose profile image
greygoose in reply todebber

You're welcome, debbs. I hope you find what you're looking for.

Doctors know so little about thyroid, we're often better looking out for ourselves. But do learn as much as you possibly can, read on here, and read all the recommended books and articles, and you will end up knowing much more than your doctors, and that stupid nurse! How dare she shout at you!!! Report her!

debber profile image
debber in reply togreygoose

They don't know Grey. It truly is sad. The nurse totally ran over what I had to say and cut me off and she didn't hear me. She was not listening and neither was the doctor when I was there. I will keep reading Grey. I have brain overload yesterday big time. I love this website and if it wasnt for you guys I would lose my mind.

Anthea55 profile image
Anthea55

I agree with greygoose. Go back to your previous dose and stick with the NatureThroid which worked for you.

Don't forget to check vitamins and minerals. Hair loss can be worse if you have deficiencies.

debber profile image
debber in reply toAnthea55

Thank you so much!!! I'm going to self medicate and need to be PM if anyone can help <email address deleted>.

Love to you all!!!!

What was the reason for reducing your dose? I'd go back on the dose you felt well on unless your FT3 was over range.

debber profile image
debber in reply toAngel_of_the_North

Hi Angel,

The reason is my doctor who was awesome got breast cancer and Im not able to get scripts for my thyroid any more from her. I had to seek another doctor and this doctor I have now is my second one I have seen and she's not working out either lol I told her I feel great on my dosage I have and she tells me I can't stay on the dose as my TSH is low and I am over-medicated. I took her advice and I went down a half a pill and then two weeks later another half a pill and I'm here to tell you my body has crashed. I called her nurse and told her about my symptoms and she said it will go away and it will level and it's because I was on too much medication. I told her that I felt that way when I wasn't on thyroid medication and that is the reason I had to go on it. I had it my whole life Angel until in my early 40s when the doctor with breast cancer told me. She told me she knew I was the moment I walked in the door lol Every since she medicated me, I 've had my life back and felt the best i ever had. I didn't know you could feel that good.

My previous doctor to her who I didn't like either took the whole panel. My T3, Free was H 7.0. Is that high Angel? My thyroxine free was 1.8. How do these levels look Angel?

I just know when I was on the four tablets I felt great and I didn't have all these symptoms and I don't know why they want to mess with something when you feel great. I cannot stand the doctors here as the majority of them do not explain anything and just want to medicate you. She also mentioned one more thing and I forgot to mention this, she told me if it got too much with the symptoms that she could put me on a antidepressant medication lol Is she for real?

Thank you, Angel for telling me as I understand a lot better now. I know why I am feeling so bad. It is so maddening and I do understand why it's called thyroid maddness. I got to the point where I couldn't get out of bed as my body weighed a ton, just my arm itself I had trouble lifting and my body ached and I did not have that. If it is effecting my hair coming out in droves, what do you think it is doing to my organs? I will not be seeing her any more and I am off tomorrow and she is getting a nice little email from me. I'll be sure to post that too.

Lots of love to you, Angel!!!!! xxxxxxoooooo debbs

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