Where has everybody gone? - ThyroidBoards.com News and Announcements - Thyroid Boards

Jump to content


Photo
- - - - -

Where has everybody gone?


  • Please log in to reply
5 replies to this topic

#1 Lovlkn

Lovlkn

    Super Moderator

  • Administrators
  • 6584 posts

Posted 04 November 2019 - 03:07 PM

Wondering where everybody has gone??

 

If you are a new poster or a poster from the past and just checking in please reply so we know you are still around.


Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

# Advertisement

Advertisement

Posted Today, 05:16 AM



#2 GOLGO13

GOLGO13

    Super Veteran Poster

  • Members
  • 230 posts

Posted 05 November 2019 - 01:43 AM

Exactly...the forum has just about died. I do think almost everyone is on facebook groups nowadays. The problem with those are they are like the wild west...with opinions all over the place and varying quality. Generally they are mostly alternative medicine based. Probably because people who are struggling are going to try anything. Not that I didn't go that route a bit also...but I find it's best to take input from all sides instead of completely dismissing something.

 

I'm still here though and check in to see if anyone posts often.


Original: TSH 71 TPO 1980

Levo 100 (March 2018): TSH 1.02 (range .5-4.5)....FT4 1.65 (range .82 to 1.77).

Levo 100 (April 2018): Felt terrible TSH .68

Levo 88 (May 29 2018): Felt better but low energy TSH 3.010 (.450-4.5)|Free T3 2.8 (2.0-4.4 pg/ml)| Free T4 1.50 (.82-1.77ng/dl) TPO 226

Levo 91 (equivalent) (July 16 2018): Felt sort of OK TSH 4.470 (.450-4.50)|Free T3 2.6 (2.0-4.4 pg/ml)| Free T4 1.44 (.82-1.77 ng/dl)|TPO 181

94 (half 88 and half 100) Best I have felt so far TSH 3.671 uIU/mL (0.350 - 5.000)| Free T4 1.14 ng/dL (0.70 - 1.25)| Free T3 2.2 pg/ml (1.7-3.7)

94 generic (Dec 2018) TSH 4.98...boo...

94 Synthroid (Feb 2019)Name Brand 6 days a week and 100 Sythroid one day a week TSH 4.829 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.01 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.6 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (April 2019) 5 days a week, 100 twice a week TSH 2.763 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.08 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.5 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (June 2019) 4 days a week, 100 3 days a week TSH 2.889 uIU/mL 0.350 - 5.000 uIU/mL| FT4 1.15 ng/dL 0.70 - 1.25 ng/dL|FT3  2.7 pg/mL 1.7 - 3.7 pg/mL

94 Synthroid (July 2019) 2 days a week, 100 5 days a week TSH 3.931 0.350 - 5.000 uIU/mL| FT4 1.07 ng/dL 0.70 - 1.25 ng/dL| FT3 2.4  pg/mL 1.7 - 3.7 pg/mL

100 Synthroid (Oct 2019) 7 days a week, 50 once a week TSH 2.479 0.350-5.000 uIU/mL| FT4 1.06 ng/dL 0.70 - 1.25 ng/d

100 Synthroid daily Synthroid 50 once a week TSH TSH 2.874 range .350 to 5 | T3 free 2.5 pg/ml range 1.7 to 3.7

112 Synthroid daily (Jan 2019) TSH 2.43 range .350-5.000 uIU/ml |  FT3 3.3 range 1.7-3.7 pg/mL | FT4 1.04 range .7-1.25 ng/Dl 

 


#3 Lovlkn

Lovlkn

    Super Moderator

  • Administrators
  • 6584 posts

Posted 05 November 2019 - 06:08 PM

36 views and 1 post so there is some activity but obviously more lookers than posters.


Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#4 GOLGO13

GOLGO13

    Super Veteran Poster

  • Members
  • 230 posts

Posted 06 November 2019 - 01:08 AM

I notice that as well. Sometimes it's hard to tell what those views are. My guess is many of them are people doing google searches and coming across a specific topic.

 

I do worry about people on the facebook groups. Thyroid medication is a tricky thing and you really need to know what you are doing when using it. And, I saw a lot of people getting advice to go on thyroid medication when their numbers looked pretty darn normal. 

 

I'm sure some people were able to find help in a good way, but I also think there was a lot of bad advice being provided.

 

hashimoto's is a tricky disease for treatment I'm finding. And it's very debatable on how it's treated by both alternative and conventional providers. 

 

I do believe in the diet component to some extent. I'm doing alternative med diets, but it could just be that I'm eating healthier and that's why its helpful. I do believe in trying to slow the autoimmune attack even if that's not really something conventional doctors recognize. 

 

However, I'm not sure about the testing analysis done by alternative medicine. Focusing so much effort on RT3 despite it being a debatable test. I've even seen some alternative medicine doctors saying that it is not a good test, but many say it's the main test. I've seen indications that the test doesn't mean as much if you are on thyroid medication, in that it messes up the results. 

 

I will say that doctors are probably a bit too much one trick ponies with T4 only medication and review labs based on that. As you figured out, many people without their thyroids need combination therapy. Not everyone, but it seems like quite a few people do from what I've seen in studies and online. 

 

I think NDT is an interesting product, but I don't think I'd want to try it. Partially because I don't think regular doctors know how to dose it. And I don't trust alternative doctors enough. Based on everything I've seen I rather just add some T3 to my T4. It seems easier to manage that. But I also don't know if endos are good at managing the combo meds. For now I'm doing pretty good on T4 only despite bad FT3 numbers. I'm interested to see if that number is better now that I'm feeling better, but I'm guessing it's not much. My endo does not believe in using FT3, but she's nice enough to order it for me. Even if it's not used by them, I still want to have in case they do decide to use it in the future.

 

Long random rant there. Wish it was a bit more clear cut. I wonder how many other diseases are like this...having stark differences between alternative and conventional medication. 


Original: TSH 71 TPO 1980

Levo 100 (March 2018): TSH 1.02 (range .5-4.5)....FT4 1.65 (range .82 to 1.77).

Levo 100 (April 2018): Felt terrible TSH .68

Levo 88 (May 29 2018): Felt better but low energy TSH 3.010 (.450-4.5)|Free T3 2.8 (2.0-4.4 pg/ml)| Free T4 1.50 (.82-1.77ng/dl) TPO 226

Levo 91 (equivalent) (July 16 2018): Felt sort of OK TSH 4.470 (.450-4.50)|Free T3 2.6 (2.0-4.4 pg/ml)| Free T4 1.44 (.82-1.77 ng/dl)|TPO 181

94 (half 88 and half 100) Best I have felt so far TSH 3.671 uIU/mL (0.350 - 5.000)| Free T4 1.14 ng/dL (0.70 - 1.25)| Free T3 2.2 pg/ml (1.7-3.7)

94 generic (Dec 2018) TSH 4.98...boo...

94 Synthroid (Feb 2019)Name Brand 6 days a week and 100 Sythroid one day a week TSH 4.829 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.01 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.6 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (April 2019) 5 days a week, 100 twice a week TSH 2.763 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.08 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.5 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (June 2019) 4 days a week, 100 3 days a week TSH 2.889 uIU/mL 0.350 - 5.000 uIU/mL| FT4 1.15 ng/dL 0.70 - 1.25 ng/dL|FT3  2.7 pg/mL 1.7 - 3.7 pg/mL

94 Synthroid (July 2019) 2 days a week, 100 5 days a week TSH 3.931 0.350 - 5.000 uIU/mL| FT4 1.07 ng/dL 0.70 - 1.25 ng/dL| FT3 2.4  pg/mL 1.7 - 3.7 pg/mL

100 Synthroid (Oct 2019) 7 days a week, 50 once a week TSH 2.479 0.350-5.000 uIU/mL| FT4 1.06 ng/dL 0.70 - 1.25 ng/d

100 Synthroid daily Synthroid 50 once a week TSH TSH 2.874 range .350 to 5 | T3 free 2.5 pg/ml range 1.7 to 3.7

112 Synthroid daily (Jan 2019) TSH 2.43 range .350-5.000 uIU/ml |  FT3 3.3 range 1.7-3.7 pg/mL | FT4 1.04 range .7-1.25 ng/Dl 

 


#5 creepingdeath

creepingdeath

    Super Gold Veteran

  • Members
  • 670 posts
  • LocationDelaware County Pennsylvania

Posted 22 December 2019 - 07:23 PM

I'm still here....

I just don't visit as much as b4 feeling much better.

I still check weekly for any new posts where maybe I can help someone like others did for me.

I would have been lost and still sick if other members didn't help me understand all this thyroid crap....

I was also very alone when all this started to happen to me.....

It helped a lot to know I wasn't the only one not getting better with standard thyroid treatment.

I felt better communicating with people from all over suffering with the same ailment I have.

 

I owe this forum & am glad to be able to play it forward for someone else.

 

jamie~



               


#6 GOLGO13

GOLGO13

    Super Veteran Poster

  • Members
  • 230 posts

Posted 23 December 2019 - 04:16 AM

I do wish more came here...but I spend quite a bit of my time on a Men's group on FB...it's a small group with just over 300 men. It's been quite helpful actually.

 

FB groups are nearly all alternative medicine groups. Or a mix of alternative and not. either way they can be difficult to deal with. Some of the groups are very large with 50K+ people in the group. And the help you get is all over the place. Like, 30 people saying you have to change diet and 30 saying you don't. I got kicked out of one group that was hardcore alternative. It was for the best because that group was a mess. It is the most popular group unfortunately. Just a lot of bad advice on there. Not because they are alternative, but because some of the moderators give bad advice (not even normal for alternative medicine). Other moderators seem to be making money on what they are doing...so anyways, I'm good with not being in there.

 

Any of the really large groups are hard to stomach. Just a free for all quite frankly. 

 

The little men's group is very good though. Small enough to be reasonable. And good discussions. It's a good group of guys even if they are all different walks of life.

 

I've become a bit less into the alternative stuff, though I still follow the diet (no gluten, dairy, soy, added sugars, corn, veggie oils, etc). The only foods I seem to have actual bad reactions to are legumes and dairy. My family has a history of dairy issues, so I'm not too surprised by that. But Legumes surprises me a bit.

 

Things are getting better for me. I'm on 112 synthroid now and feeling pretty good. I still have a few weeks before I can test to see where things are.


Original: TSH 71 TPO 1980

Levo 100 (March 2018): TSH 1.02 (range .5-4.5)....FT4 1.65 (range .82 to 1.77).

Levo 100 (April 2018): Felt terrible TSH .68

Levo 88 (May 29 2018): Felt better but low energy TSH 3.010 (.450-4.5)|Free T3 2.8 (2.0-4.4 pg/ml)| Free T4 1.50 (.82-1.77ng/dl) TPO 226

Levo 91 (equivalent) (July 16 2018): Felt sort of OK TSH 4.470 (.450-4.50)|Free T3 2.6 (2.0-4.4 pg/ml)| Free T4 1.44 (.82-1.77 ng/dl)|TPO 181

94 (half 88 and half 100) Best I have felt so far TSH 3.671 uIU/mL (0.350 - 5.000)| Free T4 1.14 ng/dL (0.70 - 1.25)| Free T3 2.2 pg/ml (1.7-3.7)

94 generic (Dec 2018) TSH 4.98...boo...

94 Synthroid (Feb 2019)Name Brand 6 days a week and 100 Sythroid one day a week TSH 4.829 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.01 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.6 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (April 2019) 5 days a week, 100 twice a week TSH 2.763 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.08 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.5 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (June 2019) 4 days a week, 100 3 days a week TSH 2.889 uIU/mL 0.350 - 5.000 uIU/mL| FT4 1.15 ng/dL 0.70 - 1.25 ng/dL|FT3  2.7 pg/mL 1.7 - 3.7 pg/mL

94 Synthroid (July 2019) 2 days a week, 100 5 days a week TSH 3.931 0.350 - 5.000 uIU/mL| FT4 1.07 ng/dL 0.70 - 1.25 ng/dL| FT3 2.4  pg/mL 1.7 - 3.7 pg/mL

100 Synthroid (Oct 2019) 7 days a week, 50 once a week TSH 2.479 0.350-5.000 uIU/mL| FT4 1.06 ng/dL 0.70 - 1.25 ng/d

100 Synthroid daily Synthroid 50 once a week TSH TSH 2.874 range .350 to 5 | T3 free 2.5 pg/ml range 1.7 to 3.7

112 Synthroid daily (Jan 2019) TSH 2.43 range .350-5.000 uIU/ml |  FT3 3.3 range 1.7-3.7 pg/mL | FT4 1.04 range .7-1.25 ng/Dl 

 





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Recent Topics

28 June 2020 Feeling So Warm! - Is feeling overly warm a sign of too much thyro...
26 May 2020 Endo threatening not to refill my medicine unle... - I have been dealing with something really fr...
16 March 2020 Looking for parathyroid adenoma, found thyroid... - I haven't been here in a while. I had a lot of...
28 February 2020 I'm not worried about a low TSH, but how to... -  I made an adjustment to my levothyroxi...

Back to Top