The Frustration Never Ends with Doctors!

[Trina64]

I saw a different endo today and she was worse than my previous, which makes me think I will just stick with my previous one for now. She actually told me that she cannot take symptoms into considerations when deciding on what to do with thyroid. I was increased from 50mcg to 75mcg 3 weeks ago and she said she would not have made that increase because my TSH was in the middle of the range. I was very symptomatic at that dose. I was so mad and I think I got pretty loud a few times, which is NOT my nature at all. I have an actual diagnosis of hypothyroidism with supporting bloodwork, so it isn't like I "think I might have it." She kept using the word "guidelines". Ugh! If they walked (okay crawled) in our shoes for a day, they might just change their tune. My boyfriend went with me and agreed that I was marginalized pretty badly.

I asked her, "So in your professional opinion, it is better for me to be on Adderall so I can somewhat function than to get my thryoid at a level that helps me to feel better? That me being higher in the range in more dangerous than to take something not natural to the body?" She didn't answer me and actually seemed shocked, but it didn't change her position on thyroid.

I have 3 more weeks on the current dose before I test, so I sure hope I feel much better by then than I do now. At least I have other options and don't feel stuck with this nonsense. I still have my appointment with my current endo, plus I have appointments with two GPs, which one I know who doesn't really consider the TSH once diagnosed and on thyroid. The other comes highly recommended, but I don't know what he thinks about treating thyroid yet.

I am in the U.S. and it doesn't seem to matter when you are in the world. Thyroid patients simply are not listened to and are treated as if this is something we have brought on ourselves.

Sorry for the vent!

I do have one question....I increased from 50mcg to 75 mcg 3 weeks ago. I actually felt decent for a while, not great, but better. I struggled terribly for 2 days at the end of 3 weeks. Although today hasn't been great, it has been better than the last two days. Has anyone else had these ups and downs, but by week 5-6 things started getting better more consistently? I need a ray of hope that their will be glitches here and there, but it will eventually settle down. I am also on 5mcg of T3.

Thanks!

[humanbean]

This link is old but should still be useful :

web.archive.org/web/2004060...

There is a thread where the above link is discussed.

healthunlocked.com/thyroidu...

[HeartWoman in reply to humanbean]

Thanks Humanbean! My TSH was 1.65 on 50mcg (down from just under 3) so hopefully the 25mcg increase will bring it down to around 1 and will feel much better. My FT4 was around 45% in range on 50mcg as well. It was as low as it could be in the range. My FT3 was not tested the last time, but was well over 50%, I believe before going to 50mcg. I was on 5mcg T3 only.

I was just frustrated because I wasn't listened to and reduced to a lab report. My boyfriend is trying to keep me from going over the cliff and that is a big job right now. I am gluten free and have been for quite a while. Hopefully that will help me absorb the thyroid.

I just have to keep everything the same and test in 3 weeks.

[SlowDragon Administrator in reply to HeartWoman]

HeartWoman

Are you a different person from Trina64

It’s very confusing if different people jump in on same thread with similar post

[HeartWoman in reply to SlowDragon]

I don't think so. I thought I just had one user name. I will need to investigate. Maybe one device logs me in with one user name and another with a different. It certainly wasn't intentional. Thanks for b letting me know.

[SlowDragon Administrator in reply to HeartWoman]

So the opening post by Trina64 ….is also you?

[HeartWoman in reply to SlowDragon]

Interesting! Yes it is. I wrote the OP on my office computer and responded on my phone. I guess I need to change one of them. Thanks for noticing. It definitely was not intentional.

[Lalatoot]

Trina it is usual to feel an improvement on an increase and then to feel worse before any benefits become apparent. That's why it's recommended to wait at least 6 to 8 weeks for blood tests.For me it is weeks 2 and 3 of any dose change that are awful. So much so that sometimes I have reduced my dose again which has proved foolish as I needed the increase. And of course I then had to restart the increase all the time wishing I'd stuck it out in the first place.

[Saritabb]

It sounds like you might also need to increase your t3. Is your t3 Time released? I found that compounded Time release t3 helps me feel better over the day instead of jumping my t3 all at once

[Gingernut44]

I’m a bit puzzled by your statement that your FT4 was 45% through the range and yet you say “it was as low as it could be in the range” That doesn’t make sense 🙃

When you have your next test, make sure you get all three markers TSH, FT4 and FT3. Remember to leave 24 hours from your last dose of Levo and 8 to 12 hours from your last dose of T3. Make it a fasting test as near as possible to 9 am. When you get your results, post them, together with the ranges, in a new post for comments. Use the link below to work out the percentages.

thyroid.dopiaza.org/

[HeartWoman in reply to Gingernut44]

Sorry for the confusion. I meant that before I started thyroid I was at the lowest end of the range. Now that I am on thyroid, it is now at 40% in range.

[dtate2016]

You will find No rays of hope in mainstream medical treatment for hypothyroidism. I too am in the US, and found a small amount of relief in the Functional Medicine / Functional Drs. (Many of them suffer bravely a barrage of criticism from mainstream medical).

I went further still away from mainstream medical and found the root cause of my Hashimotos and am now 98% healed after 30 years. Here is who pointed me in the right direction: drchristianson.com/blog/eve...

I am now 3 years off of pharmaceutical thyroid replacement, losing weight slowly but steadily, feeling very well, energetic, clear headed (no brain fog!), and on and on. I did follow Dr. Christianson’s suggestions with the help of an open minded MD (still has her own practice - not governed by Commercial Medical Conglomerates). He has the research to back up what he says - an alternative endocrinologist that has been healing hypothyroidism since the 70’s. May he live long!

[Batty1]

Im in the US and I go to John Hopkins University Endocrinology Center (pay out of pocket) Im so desperate to get my health back after thyroidectomy and this knuckle dragging Endo has been no better then the (6) I fired before him…. I have a Functional medicine doctor who won’t touch my thyroid stuff because of cancer and honestly I wouldn’t want her messing with my thyroid meds…. Hate this disease it’s the gift that keeps giving.

[HeartWoman in reply to Batty1]

I am so sorry! Your situation is even more complicated than many. You would think that doctors would know that when the thyroid is removed, they have to rely even more on how the patient feels then some lab report. I hope you get it figured out soon.

I had my ovaries removed several years ago and have had to fight that battle too. Fortunately, I think I have that figured out, but it has taken an open minded GYN willing to let me take more than standard treatment. Now, if I can get my thyroid levels optimized, I should feel much better.