I was on 225mcg and lowered to 150mcg. These blood tests were after 16 weeks on 150. I took two weeks off of 225mcg then started 150.
I feel awful. Terrible fatigue and brain fog. Was told I possibly had a thyroid storm.
My FT3 has never been this high ever. It’s almost over the range. Plus, I didn’t take my pill before. So if I did I’m sure I could have ft4 and ft3 over the range, but tsh is great.
Doctor lowered my dose to 137mcg and added Zooloft for thyroid symptoms I’m having which are insanely severe.
advice?
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Johnfishman22
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Low tsh feels like crap for me. Worse brain fog, worse fatigue. When it was 0.04 I felt the same as I do now. FT3 is higher for me then it ever has been.
It sounds like things are changing fast with your levels. keep an eye on them but dont change dose too quickly. Likely your levels are still dropping so stay where you are for now.
Most hypo people get low or even deficient vitamin levels due to low stomach acid. Suggest you get yours tested as those symptoms can be miserable.
Brain fog(can’t work), severe fatigue, muscle weakness, headaches and eyes hurt. I know, I’m not depressed. Never been depressed. I asked her and she said it will help with fatigue and brain fog?
I was offered anti depressants for adverse health symptoms/ high anxiety, but (thanks to advice from this forum) I was able to alleviate my symptoms by optimising both thyroid medication & key vitamins. I have had adverse symptoms when both under & over medicated thyroid wise. We all have our own sweet spot, where we feel most well. I now adjust very slowly (eg adding or reducing by 12.5mcg levo alternating days at first) until well tolerated. Did you test folate, ferritin, B12, vit D? If so, do share results and ranges.
I asked for something to help with the severe fatigue and brain fog. I mentioned ADHD meds, modafinal, but she suggested Zoloft? She said it should help. I am not depressed and never have been. She mentioned I am not her typical patient for Zoloft but said it can help with these severe symptoms?
I am trying to find my optimal spot. What I do know is that suppressing my tsh is NOT the right move, that makes everything worse. LOW TSH = fatigue, brain fog, muscle weakness and inmobile.
Ferritin 301 (22-334)
B12 589 >221
Vit D 130 (75-250)
What concerns me if FT3. It's high for me. FT3: 5.6 (3.4-5.9). It's always been around 4.3-4.4. That is my pre hypothyroid FT3.
Like tattybogle , I wouldn’t take an anti depressant unless this medication is necessary to alleviate symptoms of significant depression/anxiety that cannot be resolved by other means. I've been offered them by my GP on occasions when my anxiety has spiked, but (in my case) this was due to thyroid meds not being optimal, so I managed without. I have benefitted from counselling/ CBT, to cope with heightened anxiety levels, but understand talking therapy doesn’t suit everyone.
I don't have depression or anxiety. If anything I am frustrated that I still feel like crap and can't find my dose, but I am not depressed. Why would she offer me this for fatigue and brain fog? I don't get it.
I understand your concerns about antidepressants, as there is a chance they may worsen ADHD symptoms. However, some people with ADHD find these help reduce manic episodes. I’ve not come across antidepressants being helpful for fatigue & brain fog (the symptoms you mention)…… It appears to me that some GPs think antidepressants are a ‘cure all’ and widely prescribe them
Hi John, I remember your earlier posts and your surprise when 2 short weeks of dropping Levo after four years threw you into a spin and you are still working your way back.
I’ll add my 2 cents, similar to above.
Despite your patience in changes doses, you’ve done a lot of jumping around in rapid succession. Hormones like low and slow. Some of us believe you can’t go low enough or slow enough.
You note in your profile that you have gone up from 125mcg, to 150mcg, to 175mcg (looks like all in ‘23?). Above you say you were on 225mcg, then lowered to 150mcg for 16 weeks.
Your doctor now realizing a 12.5 change is warranted, I just wonder what he was thinking suggesting you power through multiple 25 mcg changes in a row when you were still so volatile in your symptoms.
For comparison, I have taken the last 9 months to increase from 50 to 100. I was 50 in Sept ‘23 and only a couple weeks ago I finally got to 100. (I also started T3 about a year ago, same dose for the whole time.)
In my personal opinion, I also question the Zoloft. Antidepressants are the most common cop out in the book… and come with their own ramping up and ramping down periods, and side effects. So I’m not saying you do or don’t need them. I’m just saying that tons of people on this forum (myself included) are offered antidepressants from doctors when they should focus on actually addressing our thyroid (the actual root causes of all our symptoms for many of us.) Worth really understanding what you are taking and what to expect from it.
I’m reading your clear and detailed history above, trying to think what I would do if I were you.
I would 100% take Jaydee and others advice:
Share results for ferritin, folate, B12 & D3. Our thyroid hormone can only work well when these levels are at optimal ( not just in range.) Our faulty thyroid creates deficiencies, but these 4 are needed for the thyroid hormones we do have to work. Downward spiral.
And then if it was me, I’d continue your patience with slow titration periods but continue making changes in much lower doses like 12.5 from here on out.
While you work on your vitamins too.
I know you’re looking for answers, and not sure the above sounds like one to you. But that approach has helped me make sense out of my symptoms and what my next steps should be.
i would .... ( you're probably not going to like this cos it's very boring)
1) not reduce to 137.5mcg , but stay on 150mcg for at least another 6 mths , (retesting TSH / fT4 / fT3 at 3 month intervals on same dose, just for information collection purposes, not with a view to changing dose for at least 6 mths ).
~ reason ~ TSH / fT4 / fT3 currently looking like 150mcg might be more or less ok for you since we know your TSH when originally feeling well was 1.5ish.
~ also , between ( huge drop !)225 and 150mcg you had another 2 wks without any, and we already know that your body does not like you doing this to it and spits it's dummy ,so i think you should allow it plenty of time to make best use of some stability /reliability in what it's working with..... in thyroid terms 'plenty of time' and 'stability' means MANY months, even 3 mths is not very long at all when you consider how many of the body's systems can become upscuttled by sudden changes in thyroid hormone levels and their need to find equilibrium again.
2) i would not play with antidepressants unless i felt that depression was the problem (which i don't think your is).
If i WAS going to change dose, or try antidepressants .. i would only do one of these at once . definitely not both together.
~ reason ~ antidepressants are a several months long journey by themselves , they take several week to start to work for a start , then the dose is very often doubled at the first review .......... sometimes they are the right choice and they have their place .. eg. my neighbour did find they definitely helped her head for about 4 months ( she was depressed and needing to find different work aged 60ish ) and then came off them without any issues when she starting to feel better... on the other hand , my daughter( 25, insomnia . stress . bereavement , breast cancer scare ) was made much worse by them (sleeping all the time /no appetite /more or less stopped eating & drinking/ turned her into a zombie .... doctor wanted to double the dose , she chose to stop ... finding a counselor who she related to well proved much more useful.
just noticed while looking back at your previous ..... you noticed no hypo symptoms before original diagnosis when TSH was found to be 10, but you say it worked really well .. 'worked' in what way? improved the numbers ? then when on 150mcg an dTSH was found to be back up at 10 and dose increased to 175
Diagnosed in 2017 - tsh was around 10, no FT4 or FT3, started on 125mcg, asymptomatic, or very unoticeable. Very athletic. Mom has hypo. Doc noticed my neck was large on a checkup. Antibodies are high.
Aug 2018 - feeling fine, no symptoms. 150mcg I believe
tsh 1.8
FT4 16 (9-19)
FT3 4.3 (2.6-5.8)
Feb 2019 - feeling great, no symptoms at all (I was in uni doing fine), was on 175mcg and increased to 200mcg here
tsh 10
FT4 11
FT3 4.4
March 2021 - on 200mcg, felt amazing. So much energy, I could take on the world here. Finished uni, started 2 businesses.
tsh 1.46
FT4 18
Dec 2022 - COLD TURKEY STOPPED 200mcg. (for 17 days) Brain fog and fatigue come in a week.
tsh 224
FT4 6
no FT3
Feb 2023 - 200mcg, felt very overmedicated. No sleeping for a months, heart rate was sky high. Can't focus, fatigue. Dropped to 175mcg for next blood test.
tsh 0.04
FT4 18
March 2023 - dropped to 175mcg here. Felt awful still, all overmedicated symptoms - should have waiting longer on this dosage as it was only 5 weeks.
tsh 0.05
FT4 14
July 2023 - on 125mcg, felt so hypo, I was in europe and just felt drunk walking around all day, dizzy, so tired, brain fog like I have never seen before. Was on 125mcg for 3.5 months at least. Increased to 150mcg
tsh 1.09
FT4 13
FT3 4.2
August - on 150mcg here. Still feeling exact same, waited 8 weeks. No change at all in how I felt.
tsh 1.04
FT4 14
FT3 4.8 (highest FT4 result yet- but no change in symptoms AT ALL, like nothing)
Oct 2023 - on 175mcg, again feeling the exact same, nothing changed here
tsh 0.37
FT4 14
Jan 2024 after 12 weeks on 200mcg .
TSH - 0.04
FT4 -16 (9-19) - other ranges are 12-22
FT3 - 4.6 (2.6-5.8)
I have 0 hyperthyroid symptoms. I sleep all day, extreme fog that feels like adhd, and fatigue that is insane. Doctor said I can try 225mcg levo for next step, but after that said I need to try armour thyroid or add t3 which I never needed before. He won't go up in levo again after this.
Tried 225mcg ....ended up feeling worse than ever before on 225mcg after about 4 weeks on it. The most SEVERE bedridden fatigue one could experience and the worst brain fog ever. No typical "hyper" symptoms such as fast HR and insomnia, but I did have palpitations.
told to take 2 weeks off then restart on 150mcg, when in the summer my tsh was 1.04 on it. and just wait many months.
2 weeks taking 0 ........
on 150mcg for 13 weeks, symptoms I experienced on 225mcg are STILL here. I can't described how tired I am.
TSH: 0.62
FT4: 14 (9-19)
after 16 weeks on 150
TSH: 1.82
FT4: 19 (11-23)
FT3: 5.6 (3.4-5.9)
Notice how your TSH is now going up on 150mcg ?..... so on the basis of this i don't think reducing to 137.5mcg is the right move, i'd stay on 150mcg for much longer and just observe.
if TSh consistently goes over about 4 ish on 150mcg , then try 162.5mcg for 6 mths ... my gut feeling is that somewhere around 175 is going to end up being 'about right' for you , but also that your body really really objects to having it's dose changed .
So . Mm main thoughts ~ stop bouncing your dose around . don't move it by more than 12.5mcg .. and don't change dose before having 2 blood tests at least 3 months apart (ie. allow any future dose change 6 months to settle , and don't change it based on one set of bloods) ...
and run away from the antidepressants ... run very far away.
(but then i am biased ... i tried them for a few days and they made me so dopey i pranged my van and i lost 9 years No Claims Bonus .. and i really did not like watching what they did to my daughter)
Disclaimer ~ my brain is not working great today , so some of this reply may be illogical ....
I really appreciate your reply. It’s very helpful.
1. The reason my doc (and me) wanted to do 137.5 is because for 1, it’s my body weight dose (86kg), and my FT3 is borderline high. It have NEVER been this high before. It’s almost 90% through range and is likely because I stopped 225mcg for two weeks then resumed 150mcg. Stupid doctor in Florida told me to do that (I’m from Canada). That’s what messed me up in the first place, stopping. Whenever I stop then start, I must convert tons to FT3 when I stop. Should I start at like 112 and taper up? Seems like I put myself in a mess from stopping and my blood is not reflecting how I feel.
2. I’m not depressed. If anything I’m just frustrated and want to get back to my normal high energy self. I asked for something to help these symptoms of fatigue and brain fog and she said Zoloft? Asked for modafinil and said no.
I know for sure now that a low tsh/ suppressed, feels like garbage. Definitely don’t want to go that route again. Big mistake.
How does my blood work have a such a GAP with my symptoms? I don’t get it. I waited 16 weeks on 150mcg cause I kept changing dose, and you’re right, TSH changed only on week 14-16 from 0.6-1.8. So it’s doing something.
What do you think of that FT3? I love that TSH. And was SHOCKED when she told me 1.8. Cause I can’t tell you how awful I feel.
"How does my blood work have a such a GAP with my symptoms? I don’t get it".
Treating thyroid is more of an art than a science. no idea who first said that , but the more i see of my own results and of other peoples on here, the more i realise that is the truth of it .
it's not a maths problem, we can't solve it with a maths mentality. it's an extremely complex bodily system that as yet no one understands much about
in thyroid land 2+ 2 may have equalled 4 yesterday , so we get lulled into a false sense of surity because it happened to make sense .......but it probably won't equal 4 next time. 'you can't swim in the same river twice' because everything in the body has moved on... and it will keep moving on. and fro some of us the numbers won't ever make sense aprt from by chance.
?why did my TSH not move from 2.5 for a year and a half while i increased from 50 mcg then 100mcg then 150cmcg ... then drop to <0.001 the following year when i tried 175 ... i dunno.
? why when i previously tried reducing to 100mcg did it result in total constipation , unable to digest anything, zombie who couldn't cross road safely.... so had to put dose back up.... and now 4 yrs later ....i can't believe it, but i'm not remotely constipated on 87.5mcg despite the fact that my T3 is lower than it's ever been ...i dunno.
ever tried walking in the woods on a moonless night ? ..... it's tempting to use a headtorch to see a clearly lit patch of ground however small it is (maths mentality)... but if you turn the headtorch off , accustom your eye's to the dark shapes and use only your peripheral vision, you have to take smaller steps and tread more cautiously , but you are aware of much more around you than you are with the torch....... which sounds like voodoo ... but it's not ~ i used to live in the woods., and seeing in the dark is an art i learned.by being prepared to turn of the torch , move slowly and follow my instinct ...... and invariably the people who fell off the path on the way down to see us were using headtorches and walking too fast.
Just want to add that I had a huge jump, after a thyroidectomy, from 112.5 to 200 in one go. I still remember what that choice by my endocrinologist did to my body. It was insane. She did it because my TSH was at 32. She went further to 225. And produced 'great labs', not unlike yours. And was so thrilled. 🙄But did not care that she screwed my body with that jump. For a long time.
Also, at 112.5 I felt wonderful, despite horrid labs. Everyone knew I would not be staying there because fatigue was setting in after the initial feeling of euphoria.
Guess where I am at now?
275 mcg. And feeling pretty darn good.
So see how nothing can make sense?
112.5 felt wonderful, awful labs. And 200, due to the rapid jump (and possibly fillers as I am on 5.5 × 50 to do that 275), was HORRID. 225 was horrid too and great labs.
Yet my final place might be 275 where I feel good, when 112.5 felt great too?
See how we can't always use straightforward brain power on it?
So as everyone is saying 225 to 150 could be quite the issue for your body.
So possibilities -
1) Filler issue. Synthroid 50s here have less ingredients
2) Your body is saying STOP IT, I can't take these jolts
3) Do you have a b12 number?
4) Sleep Apnea has some similar symptoms as well. People don't realize that. Have you ever had a sleep study?
Appreciate the reply. When you were jumped to 112 to 275, did you get bad fatigue? Bad brain fog? What did you do, go back down or hold out?
I keep trying to be logical about it but none of this makes sense to me anymore. My tsh has been way worse and I have felt completely fine. I don’t get it and don’t know what the solution is.
When I went from 112 to 200/225 I had a myriad of symptoms -
*Intense brain fog
*Would miss words in a sentence & not see it even on a second edit
*Crazy narcolepsy-like moments. I literally would be in a text exchange sitting up - one that was not boring 🤩- and drop the phone and go to sleep. The person would say 'But you literally just wrote!'
*Feeling like my bed was calling me for a nap endlessly
*One moment I will never forget, during this period. There was a major fire across the street. There were at least four fire trucks. One was almost directly under my window. I thought the fire started about 4 am, when I woke up. It started around 11:40.
*A bit TMI but it is something we need to follow. I had zero washroom issues at 112.5. When she put me to 200 I gave her her ten weeks she asked for, not one day I did not take the hormones. I know this sounds absurd & impossible, but the constipation was so insane that I literally did not go more than five days out of that period. I have no clue how that was not a hospital visit, but is the truth
*I literally could not function day to day.
*I felt not of this world, hard to explain how mentally off I felt
Now a few things -
I had had a total thyroidectomy. No clue where that fits in.
I do believe I was super sensitive to at least dyes, which I now have none to deal with 50s used to get to 275. I do think my new endocrinologist being open to doing this for me made some difference, just will never be sure how much
I have/had b12 deficiency & vitamin d deficiency. But, they were both dealt with a couple of years before this all occurred. So do not think that played into it all.
Sleep study. I have just started CPAP. I believe this has made a tremendous difference with both energy & brain fog. So not saying you have it but be open to the possibility that not everything has to be thyroid related, even when symptoms fall under hypothyroidism. Will never know what percentage was what re:helping symptoms, but CPAP has helped.
Oh, missed a question -
I had a period after the 225 & my frustration that I went on NDT. I begged my GP but she refused like I was asking for cocaine. I am in Canada, where they are more open than the NHS with NDT. Got it at first from Thailand & then from a new endocrinologist. Had horrid labs on both but felt fantastic on it. Had to leave it due to budgeting (I needed such a high level) & border issues here. At that time I would have sworn that levothyroxine was the devil & not for me. But I was wrong, I just needed the 50s and a proper level.
-------
If I had the money, when I have the money🤩, I will definitely do compounding. With NDT, levothyroxine & Cytomel I have issues in each with additives.
Unfortunately I can't answer what would have been as I went from the 225 mcg levothyroxine to an equivalent dose of NDT for many months, maybe six?
When I had to go back on levothyroxine, due to funds, I did go back to a high amount. I tried Cytomel plus levothyroxine during that period too, so again hard to make a comparison.
That's okay, appreciate your insight. Are you feeling normal now? I just want some hope that this terrible brain fog will go away. It is the worst thing about this. I would much rather break my leg and have my mind clear than this.
I still miss a word here & there. But nowhere close to the nonsense I experienced after she did that jump. It was debilitating. I taught ESL but could barely put one sentence together properly. Not being dramatic. If you see some on HealthUnlocked during that period it was due to extensive editing. And I would never see any error on the first edit.🙄
I still search for a word once in a while. But am optimistic.
But I do not feel any heaviness of the brain fog now. Just to have a one-on-one conversation took an amount of concentration that would bring me close to tears & exhaust me. This absolutely improved as I sat at 262.5 & 275 for a good four months or more. So levelling out made huge strides.
But as I have said CPAP has been a game changer in that area for sure, in very little time - in tandem (only two months? in)
I do feel that staying steady at any dosage brings huge rewards, even if it is negative. When you sit steady you can get valuable clarity either way.
I would call myself feeling pretty good, with continued optimism.
So many people have helped me here. They are beyond knowledgeable. Grateful.
And I do think that I would be beyond 'pretty good' if I could add in Cytomel again. But I am too vain to do it, as it bloats me extensively every time I give it a go. I keep the prescription by lying. Maybe lying is too harsh, by being vague. A highly underrated practice for anyone reading. Do not give up valuable prescriptions when you have not finished giving them every try possible & try to work through the side effects. I have seen too many people do that & struggle to obtain them again.
My FT3 has never been this high ever. It’s almost over the range. Plus, I didn’t take my pill before. So if I did I’m sure I could have ft4 and ft3 over the range, but tsh is great.
Has it not occurred to you that what is happening is a Hashi's 'hyper' swing? Your FT3 is higher, percentage-wise - than your FT4. That would not mean that your conversion is good. That would mean that you're converting T4 you haven't even got! Where is that extra T3 coming from? You're not taking T3, so the only explanation I can see is that it's being deposited in your blood by the dying cells.
Nor is it logical to have a TSH that high with such high Frees. But the TSH moves more slowly than the Frees and yours hasn't quite caught up yet.
So, given that you do have Hashi's, this would seem like a logical explanation to me. Nothing to panic about, just the disease taking its course.
I stopped 225mcg for two weeks then restarted. Likely why FT3 is higher because it's prioritized and converted if I go a few weeks without it. Same thing happened that started this mess for me, when I stopped 200mcg, then restarted after 17 days, I had crazy hyper symptoms and FT3 likely over the range
It could be. FT3 is most important, right? I am in Canada, I asked for my past blood results from years ago, and my FT3 was always between 4.3-4.4, even when tsh was 7, 10, 15, etc. It was always constant and I felt fine. FT4 was all over the place too. I was also diagnosed correctly when my tsh was 15 and moved to 76, again, asymptomatic.
But, what do you mean by asymptomatic? Do you know how many possible symptoms there are? And sometimes they're things you wouldn't associate with thyroid. But, in any case, TSH doesn't cause symptoms. It's T3 that mainly causes symptoms when it's too high or too low.
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