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#1 July 9, 2018 12:31:20

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

(Perhaps a new song for Paul Simon?)

I had a TT in 2013 to avoid the constant fluctuations and dose changes of thyroid medications, but regardless of how many times we find the correct dosage for me, it changes. I get to enjoy it for a short time and then I start feeling symptoms of things changing, have my blood drawn, get the results, and am instructed to change dosages. Then I go through 4-6 weeks of symptoms from the dose change, get my blood tested after 8 weeks, and find that the change took me too far in the OTHER direction. So we change the dose again, and the cycle continues.

I can't think of any reason or find any research as to why I can't hang onto a stable TSH level for more than 2 months. I guess in a few days after my physical my doc will order a free T4, too, but does anyone else have these constant fluctuations? I must be really, REALLY sensitive to medications (not to mention to the symptoms they cause!)

Sheesh - can we catch a break here please?
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#2 July 9, 2018 14:07:59

Liz1967
Registered: 2014-02-25
Posts: 260
Profile  

Still fluctuating after all these years

How much does TSH fluctuate? Mine ranges between 1 and 2.5 or 3 and I leave the dosage alone as it is so minor, almost seems seasonal. I stopped getting FT4, just confused things, did not correlate with TSH at all. Seems weird you are up and down with the same amount of thyroid hormone in, unless something interfering with absorption, like proton pump inhibitors. Since they just figured out proton pump inhibitors interfere, wonder what else might affect absorption that they dont know about!

Here is a new article saying grapes and soybeans affect absorption! Who knew.
https://www.ncbi.nlm.nih.gov/pubmed/24610609

Edited Liz1967 (July 9, 2018 14:11:28)

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#3 July 9, 2018 14:23:28

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

Hi Liz.
In the past the fluctuations have been pretty severe:

from March to September I went from 2.2 to 6.8,
from September to November I plummeted down to 0.7,
November to January down to 0.6,
then from April to June up to 2.3.

I have a physical Wednesday and she'll ask how I feel at this level and will ask if I want to tweak the dose some more, but I swear the tweaks are tiny: last time we switched me from 95 mcg a day to 93 mcg a day, and the time before that we changed from 88 mcg to 95 mcg.

I don't really want to tweak doses right now but the issue is I have all the symptoms of my TSH moving again so maybe in a week or two I'll have it checked again to see if it's going higher or lower. Sheesh!

Yes, I wrack my brain trying to figure out what could be interfering with absorption but I'm scrupulous about same time every day, no food or drink for an hour after, etc. I'm on some new meds but they are at least 90 minutes after I take my Synthroid.

Thanks for replying.
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#4 July 10, 2018 16:50:39

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 147
Profile  

Still fluctuating after all these years

I haven't had fluctuations since my TT, but it's taken me 2 1/2 years for my TSH to get into the normal range. It did seem to behave oddly sometimes. For example, in October my TSH was 0.19 and we lowered my levo from 125 to 112. When I was tested again in February, my TSH was down to .09. I finally got it up to 1.02 in June at a dose of 100 mcg. My T4 was high in the first 9 months after my TT (had some issues getting in to see my endo), but after my first dosage change (175 to 150), my T4 and T3 were normal.

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#5 July 10, 2018 16:55:24

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

Hi Emm…. glad to hear you've found some “normal”. So you pretty much stay at the same dose all the time now? that's my fantasy!
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#6 July 11, 2018 06:13:48

barbra
From: Hagerstown, MD.
Registered: 2013-05-23
Posts: 159
Profile  

Still fluctuating after all these years

Hi Sue,

I'm sorry to hear that you are still “doing the dance”, and I hope you can get settled soon.
I had my TT last August and have been stable on 75 mcg of Synthroid ever since. I can not tolerate the fillers in Levothyroxine, therefore I have to be on the name brand. Could not get stable on Levo.

Hugs.
Barbra.


I'm a little wounded, but I am not slain; I will lay me down for to bleed awhile. Then I will rise and fight with you again.
J. Dryden

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#7 July 11, 2018 09:14:57

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

barbra
Hi Sue,

I'm sorry to hear that you are still “doing the dance”, and I hope you can get settled soon.
I had my TT last August and have been stable on 75 mcg of Synthroid ever since. I can not tolerate the fillers in Levothyroxine, therefore I have to be on the name brand. Could not get stable on Levo.

Hugs.
Barbra.

Hi Barbra.
We switched me to name brand a few years ago so I guess that's not the issue. Here's the new one that's puzzling me: I am so TIRED and weak for the past week that I haven't even been able to go to the office. Doc says maybe it's because my TSH is slight elevated but I pointed out that it's been MUCH higher in the past and I haven't been this weak and non-functional. We're running a bunch of other tests but she wants me to raise my Synthroid a little. She also didn't like the looks of my EKG so getting an echo-cardiogram tomorrow.

Always something, right?
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#8 July 12, 2018 12:12:29

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 147
Profile  

Still fluctuating after all these years

Sue - LOL! Well, we'll see how it goes. June was the first time I've seen my endo since my TT that she didn't lower my dose, so it's only been a few weeks. I'm not scheduled to have labs done or see her again for 6 months, though.

Marci (MT)

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#9 July 19, 2018 11:21:45

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4075
Profile  

Still fluctuating after all these years

Hi Sue - I can't recall if we've discussed this before, but have you talked to your doc about alternating doses? Sometimes the commercially available doses might not keep you in your sweet spot. For example, if 137 mcg is too high and 125 mcg is too low, your doctor might have you alternate doses.

Of course, this is a nightmare with insurance. It's always something!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#10 July 19, 2018 16:47:03

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

Hi Kimberly.
I DO alternate doses, and have been doing that for years. Right now I do 88 three times a week and 100 four times a week, then if that's not right we switch one of the days to the other dose, so all my “tweaks” are very, very tiny, but they still cause huge swings in my TSH.

Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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