Endocrinologist frustration

[Coachgeorge]

As many of you are aware I’ve been ill for around 9 months. The entire time I begged my USA internist to refer me to an endocrinologist. Well, it finally happened but I’ve had to wait three weeks to get an appointment. In the mail today, I received a medical history to complete and directions for a blood draw. Sounds good, right? I look at the orders for the blood draw and it’s asking for Ft4 and Tsh. That’s it!! No ft3, no vitamins, no antibodies, nothing!! At least my internist checks the basics. I think I waited a long time for a whole lot of nothing. I’m better off with my internist and all of you. So sad, I’ve been very ill but I know there are folks struggling more than I am. I can’t even imagine their pain. This is ridiculous.

And, to make matters worse this guy is a professor who is teaching others to be endocrinologists😡

[Aurealis]

Here in the UK they don’t tend to test for T3 unless you’re actually taking it. Might it be a good sign that the endo is going to listen to what you say? Good luck

[Coachgeorge in reply to Aurealis]

I am taking it. I would think he’d want to know. Oh well

[NoUserNameIsNotUsed in reply to Coachgeorge]

Coachgeorge, could you call their office and let them know you’re taking T3 and that you would like to be tested for that? And ask to be tested for the other things too? Sometimes if you ask they are agreeable to it but otherwise they default to T4 and TSH.

[Coachgeorge in reply to NoUserNameIsNotUsed]

Good idea! Was too busy complaining to problem solve. Thank you!!!

[SlowDragon Administrator in reply to Coachgeorge]

Or just get Full thyroid and vitamin testing before you go

That’s what we recommend here

[Hidden in reply to Aurealis]

I live in Wales, UK (not Australia!) sometimes get T3 tested - seems to depend on the doctor and/or the hospital lab. I get private tests in between when needing to know how the T3 is doing

[milkwoman]

I would call the Endos office and explain that you’d like to get the most out of your appt and to do so it would be best to get some tests added to your lab order.

Things like:

FT3 (since you are taking T3)

TPO (thyroid peroxidase) antibody Anti-thyroglobulin antibody

Vit D25-OH

Vit B12

Folate

Ferritin

CBC

If your internist has recently run some of these tests then there may not be a need for a repeat by the endo.

[Celestialbeing]

Yes it is sad and frustrating, coachgeorge. Even the “best” endos do not test properly. They are the endos at HUPenn. They are not permitted to test FT3 nor script for desiccated. I am in the USA too. I will be participating in the thyroid cancer conference next week. There are ways around this issue. There are lists of endos/specialist clinicians on the RLC website and there is private testing available through private labs such as Canary Club. I will send you a message.

[Coachgeorge in reply to Celestialbeing]

Thank you

[Coachgeorge in reply to Celestialbeing]

What’s the RLC?

[Celestialbeing in reply to Coachgeorge]

The manufacturer of NatureThroid and WP thyroid porcine derived desiccated thyroid extract hormone. Right now there are issues with availability of some strengths. There is also NP by Acella but there are major issues with NP.

[Coachgeorge in reply to Celestialbeing]

Okay thank you

[Batty1]

Do the blood test and go see this Endo and at appt. ask for the Anti-bodies test ...as for FT3 it seems to be the ignored thyroid test I got met with this yesterday from my Endo and you can argue with these idiots about why Ft3 is as important as Ft4 and it doesn't matter because what you the patient feels is important for your health decision they think otherwise and you know it's more important what the Endo thinks he/she is superior..."rolling my eyes".

My disappointing phone call yesterday:

My Endo yesterday said that my 16 point HIGHER cholesterol level (crazy high)in 8 weeks has NOTHING to do with the reduction of thyroid meds 8 weeks earlier and my vicious jell-o like fatigue also has nothing to do with my med change 8 weeks ago either.....so my take away is MY ENDO does not CARE about my HEALTH and if I die from early heart disease .....NO BIGGIE.

I keep my expectations low when seeing/talking to Endo it's easier to deal with the disappointment. Good Luck maybe you get someone good.

[Coachgeorge in reply to Batty1]

I’m sorry. The longer I’m on this road, the more confused I get. It’s very frustrating. I had to retire and basically have no life beyond the bed and my tv. 😢

[Batty1 in reply to Coachgeorge]

I can totally relate I lost my active healthy happy life 3yrs ago to thyroid cancer and truthfully I lost my female organs to ovarian cancer and ability to have children 15yrs ago and that was easier to cope with then the Thyroid loss and I really feel it comes down to medical care "CARE" makes the difference.

[Coachgeorge in reply to Batty1]

I’m so sorry to hear. You are in my thoughts. We can only keep advocating for ourselves. It’s a struggle

[Hidden]

this is frustrating, but maybe do give them a call and see if this changes anything? I am absolutely stunned at the level of care in the whole Western world, including Ireland, where I live. Back home, in Poland, it is a normal procedure to run ft3 at all times, even if you just take levo...

[Coachgeorge in reply to Hidden]

Good to hear from you. I’m going to call today. I hope you are doing better

[Hidden in reply to Coachgeorge]

Sounds good! I'm doing better, thanks! Still adjusting, upping t3 and all, recovering.

[Coachgeorge in reply to Hidden]

It’s such a challenge. Wishing you the best

[Rudy1]

I'm not sure how you are feeling unwell but I have had major issues the past few years. Suddenly my body couldn't handle taking Levothyroxine.

After many visits to specialists I found a holistic dr.

I feel great. He tested all my hormone levels.

I'm on Omega 3s, CBD, Magnesium, bioidentical hormones, vitamin d. I'm on other supplements to adjust my hormones to help me sleep better.

I had severe muscle and joint pain. My endocrinologist could not help me.

Please see a holistic dr as well. They will test for things that conventional dr will not.

Good luck!

[Coachgeorge in reply to Rudy1]

Thank you. It has been considered. I was taking CBD but it put me to sleep. It's worth a try. I'm going to give this current plan a shot. If it doesn't work, I'm going to try functional medicine. Glad you are feeling better.

[Hidden in reply to Rudy1]

"After many visits to specialists I found a holistic dr.

I feel great. He tested all my hormone levels."

How long ago was this? Are you still taking thyroid replacement hormone (thyroxine or T3) too? Some people can only take T3. Or in other cases it seems the inability to take it is caused by adrenal problems, as the adrenals and the thyroid work closely together.

The reason I ask is that recently on here there was a discussion about giving up thyroxine. It seems that for some reason stopping thyroxine altogether can make you feel great at first. Then as the store in the body depletes there is a huge crash.

So be careful...

[Coachgeorge in reply to Hidden]

Are you responding to Rudy1? I get so confused on this website

[Hidden in reply to Coachgeorge]

Yes I was. It is confusing. And so many of us are suffering from the ignorance of doctors about thyroid problems. It's your thread though, so mustn't digress too much. Though I can't really think of anything helpful to say.

[Rudy1 in reply to Hidden]

This started last year. I am still only on Levothyroxine. The supplements I'm now taking are allowing me to tolerate the medication. My main issue was horrible inflammation in my entire body. Thx

[Buxon]

Not making light of your situation but...when I first noticed there was something wrong with my left eye I had field tests carried out at the local eye hospital. At the end of the tests I was accused of sleeping because I did not respond as they expected. I pointed out that I was aware I did not respond as often with left eye as I did with my right eye. Anyway, consultant told me to return in two weeks time and, wait for it, to drink enough coffee before I leave home for my appointment. I was furious. Anyway, two weeks later when I returned and had various tests done I was told.....There is bleeding in your left eye and you have a tumor on your pituitary gland which has stretched out your optic nerve and flattened your pituitary gland. The tumor has to be removed. But don't worry, we rather where it's located, because it can be operate on via your nose!!! After that we will deal with your eye......That was 2014 and to-date I am still being seen by various bodies and anything that can go wrong has gone wrong from panhypopituitism. Eye sight is poor and left eye retina has detached. But hey, that's life. Try and stay positive.

[Coachgeorge in reply to Buxon]

I’m so sorry. That’s awful. I’ll keep you in my thoughts

[Buxon in reply to Coachgeorge]

Thank you.