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#1 April 2, 2017 17:50:24

swhited
Registered: 2014-11-01
Posts: 17
Profile  

Symptoms lag behind tsh and Free T4

Hi,

Wondering if anyone else notices their symptoms lag behind their lab numbers?
I seem to experience symptoms for awhile after labs show the numbers have stabilized into what are good levels for me. Additionally, as TSH started rising in hypo territory long after RAI and we began looking at a small dose of replacement hormone, I notice I have to insist we adjust doses slowly as I seem to be very sensitive and even a small increase in Synthroid will cause hyper symptoms fast heart rate, sleeplessness, irritability, jittery anxious feelings. So as we manage the increasing hypo numbers and symptoms, I have to take it very slowly so that my body can slowly adjust. TSH just dropped from 7.50 to 2.98 in just 6 weeks which is too abrupt for my body. I end up feeling worse, sort of stuck in a weird limbo where I feel alternately hyper and hypo at the same time. I'm sure I'm not the only one who seems to be really sensitive to ups and downs of thyroid hormones. Wondering if some of you might offer your perspective of your experience. I know we are all different but it always helps to know there are others who feel similar as that nagging doubt about “ am I just being paranoid?” Always looms. LOL

Secondly, I'm wondering if there are some questions I should definitely be asking my endocrinologist so that I stay educated and informed, which we all know empowers us to feel a small amount of autonomy with a disease that often seems to steal that very thing from us.

Thank you for any thoughts you might share.
Susan

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#2 April 3, 2017 07:05:42

flora
Registered: 2013-03-28
Posts: 124
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Symptoms lag behind tsh and Free T4

Hi Susan,

Like you, I know all about how it feels to have a body that complains fast enough when we change a dose too abruptly, but then acts like cold molasses responding to it - sometimes, early into a dose change, it feels like a Grand Prix wrestler has picked me up, and body slammed me onto the mat! Going slowly is definitely better for me.

And yes, some symptoms just don't want to let go for what seems like ages. Even though I've recently got to a great level for me (feeling so close to “all back to normal”), my doctor says it can take several months after, for things to actually heal - in my case, proximal muscle complaints - and I'm (patiently) looking forward for these to resolve, too.

It took a lot of “trying on” different levels/doses, with the obligatory - and hard! - wait after each one, to see if we were moving in the right direction , but it's been worth it. I am lucky to have a doctor who understands that each thyroid patient is different, and that sometimes the numbers just don't tell the whole story - symptoms matter, too. It can be a long process - the ranges are so wide - but I guess all we can do is to slowly soldier on to find our own spot, and then wait some more, till our body heals from all it's been through.

Rooting for you!
flora


… there was a star danced, and under that was I born.

Edited flora (April 4, 2017 06:05:32)

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#3 April 4, 2017 07:33:36

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3944
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Symptoms lag behind tsh and Free T4

@Flora - love your wrestling analogy!

@Susan - Agree with your doc that it can take some time for symptoms to correct themselves once you have finally stabilized your dose. If some time has gone by, it might be helpful to document the exact symptoms and run them past your primary care provider to see if he/she can shed some additional light.

That's good that you know your body and know that you need to take dose changes gradually. I always responded VERY quickly to small dose changes of methimazole, and now still respond fairly quickly to adjustments of thyroid hormone replacement.


Kimberly
GDATF Forum Facilitator

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

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#4 April 9, 2017 05:32:54

Liz1967
Registered: 2014-02-25
Posts: 163
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Symptoms lag behind tsh and Free T4

During the six months I was on methimazole, I felt awful but after the TT, the first year on levothyroxine was much better; however, even though my levels were within normal range, I still had complaints of anxiety, headache, muscle aches, etc. In my case, and this is not true for everyone i am sure, my “Aha” moment came when I went back and looked at my thyroid levels from annual physical exams long before I had Graves and found that sometimes they were mid range, sometimes higher or lower. As these checkups were routine exams, mainly for PAP smears, with no physical complaints, it dawned on me that since I did not even notice these variations then, why were they affecting me now. I have always had some anxiety, get migraines, have aches and pains, long before Graves. So I got my TSH at the value suggested post TT level, between 1 and 2 ( approximately, can be a bit over or under) and keep it there. If I feel I am a bit more anxious or achey or more headaches, I think of thyroid levels as a last consideration, not first. I found my anxiety over my levels was working against me, definite mind body thing. That is just me, everyone is different, and should my resting pulse exceed 120 or my hair start falling out by the handful, I would for sure get interim labs, but other than that, I have given up on “fine tuning” my values. These levels are not obtained in a vacuum, they naturally vary a bit by lots of factors like stress, illness, weight, season, etc so for me, so if within range of .5 to 2.5, I leave it alone.

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#5 April 17, 2017 15:43:41

swhited
Registered: 2014-11-01
Posts: 17
Profile  

Symptoms lag behind tsh and Free T4

Thank you Liz, Flora and Kimberly,

I know from past values, TSH between 2 and 2.5 is a good place for me as long as T4 is less than 1.0. I agree with you Liz that seasons, stress, illness etc can affect things, and sometimes it's not really the Graves. Although I definitely notice that along with my endo we make very minuscule changes so as not to cause wild swings, but I think a swing up to 7.22 is a lot from 2.3 and it'll take awhile to heal from that swing. When I had RAI slightly over two years ago, I had an extremely low dose as my uptake values were through the roof. It took 9 months to make my TSH values to rise to a close to normal range -still remaining under 1.0 for a full year. Ultrasound and antibody tests also didn't begin to show the change for over a year either, so our best guess at this point is the RAI didn't “kill” my thyroid gland but sort of shocked it into mostly behaving. It wasn't until about six months ago that my TSH started to rise into hypo territory. It came back down after 25 mg of synthroid but then started rising again and so now I'm at 50 mg. I think my thyroid is not at a permanently stable place and so there are going to have to be adjustments and I'm super sensitive to synthroid and so we have to go slow otherwise hyper symptoms surface while my body adjusts.

I think your reminder Liz not to always blame my thyroid first is a good one. Something I'll definitely keep in mind. I suppose there may always be ups and downs- I think we all try to hope for longer term stability. But perspective is probably key.

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#6 April 17, 2017 15:43:46

swhited
Registered: 2014-11-01
Posts: 17
Profile  

Symptoms lag behind tsh and Free T4

Thank you Liz, Flora and Kimberly,

I know from past values, TSH between 2 and 2.5 is a good place for me as long as T4 is less than 1.0. I agree with you Liz that seasons, stress, illness etc can affect things, and sometimes it's not really the Graves. Although I definitely notice that along with my endo we make very minuscule changes so as not to cause wild swings, but I think a swing up to 7.22 is a lot from 2.3 and it'll take awhile to heal from that swing. When I had RAI slightly over two years ago, I had an extremely low dose as my uptake values were through the roof. It took 9 months to make my TSH values to rise to a close to normal range -still remaining under 1.0 for a full year. Ultrasound and antibody tests also didn't begin to show the change for over a year either, so our best guess at this point is the RAI didn't “kill” my thyroid gland but sort of shocked it into mostly behaving. It wasn't until about six months ago that my TSH started to rise into hypo territory. It came back down after 25 mg of synthroid but then started rising again and so now I'm at 50 mg. I think my thyroid is not at a permanently stable place and so there are going to have to be adjustments and I'm super sensitive to synthroid and so we have to go slow otherwise hyper symptoms surface while my body adjusts.

I think your reminder Liz not to always blame my thyroid first is a good one. Something I'll definitely keep in mind. I suppose there may always be ups and downs- I think we all try to hope for longer term stability. But perspective is probably key.

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