[swhited April 2, 2017 at 5:50 pm Post count: 18]

#1060833

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

[flora April 3, 2017 at 7:05 am Post count: 133]

#1185004

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

[KimberlyOnline Facilitator April 4, 2017 at 7:33 am Post count: 4288]

#1185005

@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.

[Liz1967 April 9, 2017 at 5:32 am Post count: 305]

#1185006

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.

[swhited April 17, 2017 at 3:43 pm Post count: 18]

#1185007

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.

[swhited April 17, 2017 at 3:43 pm Post count: 18]

#1185008

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.

[normandy May 1, 2017 at 8:41 am Post count: 3]

#1185009

Endocrinologist upped my synthroid from 50 to 75 and wondering how long it will take to notice some relief from my Graves’/depression. Mornings are the toughest for me. I wake up to a noisy stomach and lots of anxiety. I feel the need to get out of bed and get moving as that seems to curb some of the symptoms. I continue to feel ‘out of sorts’ which can run the course of crying to needing to lay back down. My appetite is not what it used to be and I have dropped some weight. I sleep well so that is a relief but the overall feelings have kept me away from my teaching job as I just can’t face standing in front of a class of nine and ten years olds. It wouldn’t be a pretty sight to have your teacher crying in front of you!
I had RAI four years ago and was doing great. This past winter I came down with a sinus infection and took a Z-pack of antibiotics along with lots of Advil for back pain and a couple of muscle relaxers prescribed by primary doctor. I couldn’t shake the feeling of NOT FEELING like myself and decided a trip to the Endo was in order. Blood work shows TSH is in normal range but much higher than it has been the past four years. Endo says the body was trying hard to fight the infection and immune system might not have handled it well thus putting me in a depressed state. Taking 20 mg of Prozac every day along with synthroid.
It’s odd that as late afternoon/evening rolls around, I begin to feel more like my ‘self’. But cycle starts all over again the next morning and I begin to doubt I will ever get back to the old me!
I turned 60 this year and that was tough but shouldn’t have put me in this present state.
I am trying very hard to believe this will all sort it self out but when in the ‘black hole’ it is very hard to stay positive.
Any suggestions, words of encouragement or just a hello would be great! I see the ENDO in two weeks for a follow up…
Thank you! This site is a comfort!
Normandy

[KimberlyOnline Facilitator May 1, 2017 at 5:47 pm Post count: 4288]

#1185010

@normandy – it can take a few weeks to know if a particular dose is right for you, but personally, I notice a change within a few days when my replacement hormone is increased.

I’m sorry that your symptoms are keeping you from work and clearly affecting your quality of life. If you don’t feel that your current regimen with the Prozac is effective, don’t be afraid to seek out a second opinion.

One other thought would be to check Free T4 and T3, if your doctor isn’t already doing that. TSH alone is fine for those who are stable and feeling well, but this additional info might help shed some light on what’s going on since you are clearly having symptoms.

Hope you can get some relief soon!

[Liz1967 May 2, 2017 at 4:55 am Post count: 305]

#1185011

normandy, I have learned thru this process not to be so quick to blame thyroid hormones! Prozac of course works by inhibiting the uptake of serotonin, thus keeping it in your body longer. You need serotonin to avoid depression. Serotonin is made in the gut with the help of bacteria. You just wiped out a lot of your gut bacteria with antibiotics. Maybe a good probiotic along with the Prozac could help restore normal gut microflora and help with serotonin levels. Depression is characteristically worse in the morning and improves thru the day. Any illness can make you depressed and people with influenza often feel crummy for months afterward, with lingering cough, fatigue, muscle pain, etc. Big changes in your thyroid levels can get you into trouble, of course, but as you have been doing well for years and suddenly run into trouble after an illness would make me look for other causes beside changes in thyroid levels that are still within the normal range. My TSH varies a couple of points periodically (often higher in winter) but stays between 1 and 2.5. The normal range for no thyroid is 0.5 to 3, and I do not notice any symptoms at either end of the range. Everyone is different and you may be more sensitive to changes, but explore other possibilities too. I ended up chasing my tail the first year on levothyroxine because I attributed everything to thyroid levels, resulting in frequent dose changes, up and down, so take any increases slowly.

[forumusertest May 25, 2017 at 9:37 pm Post count: 3]

#1185012

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