5 weeks after increasing to 75mcg levo and…

[JoJoloveschocolate]

I feel bloody great!!! After feeling like I was circling the drain a couple of days after the increase I now feel like somebody has flicked a switch inside me…Turbo Boost…in a non-over-medicated kind of way. It’s mint! It won’t last though will it 🤣🤣. In another week or so I’ll probably end up stalled…broken down…on the hard shoulder of life…hazards flashing! Ah well. Shall enjoy it while it lasts. Thanks to everyone who replied to my last cry for help on here.💖 Xxxxx

[HealthStarDust]

Happy for you. Any good day is worth celebrating and make the most of 🙏🏽

[JoJoloveschocolate in reply to HealthStarDust]

Thank you HealthStarDust! It’s a rollercoaster isn’t it. I’m prepared for the fact that it will all go wonky again very soon…either that…or my bloods will come back with a low tsh and the gp will try to reduce the dose. My friend keeps telling me I need to be more positive (I think she might be an ex-friend because i haven’t heard from her since I started to get really unwell with hypo symptons) but I think it’s just the reality of the situation isn’t it. It all mainly seems like hard-going. Feel glad to be having some good days for a change. xx

[HealthStarDust in reply to JoJoloveschocolate]

JJLC

I have no good days. Good moments here and there. So, my advice to you is enjoy it! Don’t waste precious energy on what may be, and be here in the now and tackle things as and when or IF they come up. Remind yourself you was able to insist on an increase, and can do so again if needed.

🫶🏽

[JoJoloveschocolate in reply to HealthStarDust]

I hope things get better soon for you HealthStarDust. I totally understand.Before i found out i was hypo every day was horrendous. I just carried on, spending more and more time in pain and in bed because i just thought it was all due to worsening of cfs/me that I’d been diagnosed with.I just bumbled along taking painkillers, anti inflammatories, laxatives, heartburn meds, meds for trapped wind, meds for dizziness, this-that-and-the other. You’re so right - I’m taking your advice and going to live in the moment and tell myself I can/will be strong later, if needed. In fact, everything might be plain sailing! Thank you so much for your advice xxx

[HealthStarDust in reply to JoJoloveschocolate]

You are welcome.

And, thank you. You have given me some hope that better times could lie ahead with Levothyroxine 🫶🏽

[JoJoloveschocolate in reply to HealthStarDust]

I really really hope things get better for you. I expect things to be up and down for a while, but it’s lovely to have some days where everything seems all settled all at once instead of constantly stuck on a merry-go-round/ see-saw of horrible symptoms.

[HealthStarDust in reply to JoJoloveschocolate]

Thank you m’dear. At the moment everything is falling apart, so I have multiple referrals to other services. If they understood the thyroid, I think they’d understand that I am still just under medicated most likely.

I’m so glad you shared your good news. We all need that glimmer of hope 🫶🏽

[JoJoloveschocolate in reply to HealthStarDust]

Oh no!! I’m so sorry to hear that. Will you be seeing an endocrinologist to help you? I was in a similar situation before the cfs/me diagnosis. I ended up having to give up work. I couldn’t cope. After the diagnosis they sent me off to a specialist clinic - 50 miles away on a busy motorway to fill in worksheets like being at school. I think I probably have got cfs…but all related to autoimmune thyroid disease. I think I’ve had it for years. I remember saying to the gp at the time about thyroid issues in the family. Thyroid sure is a rocky road. Do you think they will increase your dose?

[HealthStarDust in reply to JoJoloveschocolate]

No. Just other specialities for others things which are more likely to be symptoms of under medicated I believe.

I hope they will increase dose. Like you, I don’t take it for granted that I may not have a fight on my hands the next time. We shall see 🤞🏽

[JoJoloveschocolate in reply to HealthStarDust]

I know exactly what you mean. I wish wasn’t a fight. I’ll keep my fingers-crossed for you that you can get the dose increased without any malarkey. There are so many things that are hypo related that I wasn’t aware of. I had my gallbladder out when I was age 30 and apparently gallstones are also common with hypos. I had no clue. It’s surprising the things that are related to being hypo or being under-medicated. I had severe stabbing pains in my ears before levo and then one day one of the members on here mentioned that they get ear pain when under-medicated!

[HealthStarDust in reply to JoJoloveschocolate]

Yes. There is so very much to process when diagnosed. In a way, due to the slowness of optimising dose, all we can do is process. And, being on the forum is like a peer support lead therapy service in a way.

Although, of course I’d rather have a disease with a much easier cure and skip all the processing and go on to enjoy life!

[JoJoloveschocolate in reply to HealthStarDust]

So true…and yes - the slowness is a bloody nightmare….just wanting to feel well then but then having to contend with all the back and forth with feeling well and feeling ill again. I’ve been seriously tempted to give up, but couldn’t face the prospect of going back to the beginning again. I’ve been diagnosed with cfs and now hypo…and to be honest it feels like - out of the frying pan and into the fire! We’ve just got to hang in there haven’t we. One day we’ll look back on all this and…well…certainly won’t look back and laugh, that’s for sure! x

[HealthStarDust in reply to JoJoloveschocolate]

I have seriously been tempted to give up. Even today! I thought I would take a break for a few days and have some semblance of normality as this was my experience before when I took a break for a few days (long story, but I was trying to solve symptoms of what I believed were from was over medication). But, by day 3 the fatigue came back! So really really really trying my best to stick it out. It’s just such a head-trip to be on medication/hormone that makes you feel worse not better!

[JoJoloveschocolate in reply to HealthStarDust]

Exactly. I never, ever expected to feel so ill at the start of each dose/ increase! On the 50mcg and 75mcg doses it took roughly five weeks each time before I started to feel well. The wellness feeling dropped off pretty quick though on the 50. Maybe it will last longer on the 75. I think it’s a matter of us getting used to our own reactions/responses isn’t it…learning the signs from our own bodies of under/over medication…when things feel off. Sounds like you’re having a rough time. Are you due for blood tests soon?

[HealthStarDust in reply to JoJoloveschocolate]

Learning the signs from our own bodies of under/over medication…when things feel off.

100%

The only dose in which I felt as you described (better then worse) was my first dose 100mcg. But, this proved to be too much for me all at once, and dropped to 50mcg and increasing slowly ever since I’ve not experienced that again.

It’s the life of bed and sofa bound for me still, and trying to be patient with myself.

[Lalatoot in reply to HealthStarDust]

You don't need to take levo all at once. I couldn't tolerate doses of more than 50mcg so the endo dosed me in multiple daily doses. I now dose first thing and bedtime though I have also dosed in 3 doses Inc mid afternoon.

[JoJoloveschocolate in reply to Lalatoot]

If I get an increase up to 100mcg this time after my blood test I’m going to try splitting the dose. When I went up to 75mcg I felt at first like I’d been hit by a truck. Slow dragon suggested then splitting the dose if things didn’t pick up, but it evened out after a couple of days. But for any more increases - I think I’ll split them to try to avoid that feeling of being flattened again.

[Contra21 in reply to HealthStarDust]

Having no thyrpid is a death sentence? Will we ever het energy back otlr just give up?

[J972]

Amazing news! 👊🏻 Congratulations xx

[JoJoloveschocolate in reply to J972]

Thank you! I’m enjoying feeling well for a change. It’s good to feel that sense of “getting a break” instead of everything being awful all the time! x

[J972]

I can only imagine!

You never know, this might be your dose/sweet spot - here’s hoping! But I can understand your reluctance to ‘get the Brasso’ out for now. Enjoy x

[JoJoloveschocolate in reply to J972]

Hehe! Thank you so much for your comment, you made me smile xxx

[TiggerMe Ambassador]

Isn't it just the best feeling to know that you are still capable of feeling like you 🤗

Best medicine ever

[JoJoloveschocolate in reply to TiggerMe]

Oh, it really, really is the best feeling! In fact, I’d forgotten what is felt like to feel like “me.” It’s been such a long time. My world seemed to be getting smaller and smaller…bed to a short walk around the block. Even my vocabulary seemed to be shrinking if that makes sense! I’m still having some aches and pains and getting tired quickly, but I seem to be able to bounce-back faster somehow and I’ve been able to cut my painkillers down too. And poo…..I have done normal non-constipated poos that are not like rubble/rocks!! TMI…I know…But - Praise be! lol xx

[HealthStarDust in reply to JoJoloveschocolate]

Oh no! Poo talk is always welcomed 💩

[JoJoloveschocolate in reply to HealthStarDust]

Lol!! Omg. It was the poo issue that was the final thing that made me test for thyroid. I’d increased my fibre intake, fluid, etc, but nothing I did seemed to work. I was able to actually go for a poo most days, but every time it was like pooping bits of brick and slate! Agony. I did a poo the other day that was normal and I was amazed….proud of myself…I wanted my husband to look at it…it was perfect…a thing of beauty 🤣🤣🤣x

[HealthStarDust in reply to JoJoloveschocolate]

Oh! I look forward to the day. Oddly, I didn’t suffer from constipation pre diagnosis, but since I’ve been on my current dose I have. I guess until someone’s on the right dose, in a way we become more hypo?

[JoJoloveschocolate in reply to HealthStarDust]

Yes, it’s strange isn’ t it. I think I read on the forum somewhere that someone said that being under-medicated can make you feel worse. I know after a few weeks on the 50mcg I started to feel really rough again. Worse than before. Constipation is miserable. I had it on and off for years then it went to a whole other level! Like trying to poo small pineapples…made of rock!

[HealthStarDust in reply to JoJoloveschocolate]

Yes, I believe being under medicated can make people worse. It stands to reason. The only thing is, we can’t actually do anything about it until dose increase week happens. It’s a miserable disease that’s for sure.

[Ellie-Louise in reply to JoJoloveschocolate]

😂

I was replying to the husband bit that you mentioned, that really tickled me.

[JoJoloveschocolate in reply to Ellie-Louise]

🤣🤣xx

[HealthStarDust]

How are you doing now? More good days discoing at the supermarket?

[JoJoloveschocolate in reply to HealthStarDust]

Hiya! Thanks for asking about how I’m doing. Well, I had a couple of days shortly after I made the original post where I felt like I’d fallen off a cliff and went to bed for two days and had to go back on the painkillers and lay there thinking “uh-ohhh, here we go. again. That’s what you get for bragging and discoing down the supermarket🤣!!”…but then …I bounced back and felt fine again, so I think at that point I might have just gone a bit boom and bust and massively overdone things because I felt so well. Things are not quite as good now, but thankfully nowhere near as awful as I felt when I got a few weeks into the 50mcg and symptoms came back with a vengeance. Overall, I’m not feeling too bad, but I have noticed this last week feeling a bit more achy again, muscle weakness, low back pain and feeling a bit irritated by everything.Strange, but also I had a bout of tinnitus again yesterday which shocked me because that stopped completely a few weeks after starting the levo. I’ve got a routine blood test on Tuesday and I’ve been trying to work out in my head what the tsh might be, using all kinds of strange mad-professor made-up equations! I did that last time and the tsh was nowhere near what I thought it would be 🤣🤣Lol. I think I might need another increase, and am hoping that if that’s the case it won’t be as difficult as last time. How are you doing? xx

[HealthStarDust in reply to JoJoloveschocolate]

Aw! Bless you.

The boom and bust feeling is very familiar. Sometimes it comes on all at once and I’m suddenly very cold, fatigued achey and just crash. Bed and binge watching has been a friend. Lately my spine is hurting, since my last increase, but other symptoms slightly improved such as pain in foot and leg. This seems to be the consistent pattern for me. Some symptoms slightly improve while new ones develop with each increase. I’ve got a few more weeks on current dose so as always I’m hoping things will get better. On the 6th week of my last dose increase I definitely felt more awake and that has continued.

If you need an increase I hope you find it easier to get one. I’m always fearful that I won’t get an increase but so far so good. Always use the words ‘trial’ and your wellness could sit anywhere in the range and it’s not enough to be in range.

It’s good we are having progress! Yahhhhh!!

[JoJoloveschocolate in reply to HealthStarDust]

Oh it is wonderful to feel a bit of progress isn’t it, albeit up and down. Go us!!! I’ve had foot pain too… very strange. All the aches and pains are odd…they come and go and migrate around the body. Also I was having massively heavy periods/hrt withdrawal bleeds (not sure, but was having a bleed every 28 days)….anyway since starting levo i missed a period and have had two very, very light bleeds, so I’m hoping this, and some dietary changes, will help my ferritin level too. I also feel a bit more awake like you which is nice and also I felt a change in the way I was coping with stuff if that makes sense…feeling a bit less like every small general life issue that cropped up meant the end of the world. Although, that said, I’ve been a bit more irritable the last few days, but that might be related to having an increase in aches/pains again. I’ll see what the blood test shows…although I don’t really trust the nhs tests - last time the tsh was 1.9 on the nhs and 2.8 on the medichecks and the tests were done not too far apart, same conditions. Ah well, we’ll see. Thanks for the advice - to ask for a “trial” of an increased dose is a brilliant idea. Last time I mentioned an increase to the nurse before i saw the gp and she made me feel like i was a drug-seeking addict! Knowing my luck the tsh will come back as -100! Lovely to hear how you are doing and having some progress xxx

[HealthStarDust in reply to JoJoloveschocolate]

TSH vary loads for all kinds of reasons! See under heading of interpreting thyroid function tests in CKS summary at this link cks.nice.org.uk/topics/hypo...

I often cite this if needed and luckily I have several TSH on one dose on my NHS record to prove it (long story). My advice is to steer the conversation on symptoms away from blood tests as far as possible.

Irritability… yes this comes and goes for me too. Usually it dissipates quickly once I recognise it’s happening and work with it.

Periods… my last one was light and earlier/ later than expected. Hard to judge as the one before that was 3 weeks long! But, I believe they do stabilise. I’m more concerned that I don’t seem to be ovulating despite period!

I think some medical professionals are very good at making us feel like drug seeking addicts. These are probably the same ones that let the power dynamic get to their heads rather than work with us collaboratively as well as not knowing what they are doing.

As for progress, YES! Definitely go us! A few weeks ago my home temperature was kept at 24, as well as being constantly under an electric blanket. Now, I am surviving on 23 most days, and not needing the electric blanket. Obviously cold supermarkets and some people colds homes are still a no-no! And you will not believe how many cosy thick pyjamas I have had to purchase. But but but, I am glad I am not needing the electric blanket. 🙏🏽

[JoJoloveschocolate in reply to HealthStarDust]

Thanks for the info. Wow! I didn’t realise so many things could affect it. Makes it all even more hit and miss doesn’t it….like playing the lottery. I might take bets on it!! I’ve got a morning appointment 0850 and I’ll leave my thyroxine off until after the test and not have any breakfast or coffee before I go. I predict that my tsh will be low as I thinks it seems to lag behind how I feel. Last time I had it done it was about two weeks after having covid so maybe that dropped it a bit.

Yes, I think the periods will stabilise and maybe the ovulation will too, once the thyroxine levels are also stable. It seems to mess up all the systems in the body doesn’t it.

I hate dealing with doctors or getting into conflict with “authority figures” It’s very hard for me because of past issues. I think that’s how I ended up with a diagnosis of frbro then cfs….just kept nodding and smiling. I’ll just have to grasp the nettle. Urrrghhhh.

I’m also a lot warmer now, and have not been having as many raynauds attacks. I haven’t been crashed out in bed in the afternoons lately either, but….I am still sneaking upstairs to put the electric blanket on at night…now that I think I am addicted to! And cosy thick pyjamas…I hear ya! I sometimes look like a fleece version of the the blob!🤣

[FallingInReverse]

JoJoloveschocolate HealthStarDust and others on this thread… hi!

I found this old thread by searching “5 weeks” on this board because I am 5 weeks and 3 days into my med change and I am completely fed up and losing my patience.

I was trying to find something that would justify my doing my blood test tomorrow and getting on with my next titration, vs waiting the 6-8 weeks. Interesting to see the comment that you felt better around the 6 week mark (but it didn’t last.)

Ugh. Patience.

That being said - the rest of this thread reads like the internal dialogue I was having just now. So many similarities to my history too.

I know (and will confirm next week) that I am still undermedicated with sub-optimal vitties/minerals and maybe even food intolerance, so I still have a few steps to take over the next few 6-8 week timeframes before I REALLY lose hope.

Right now I’m perusing the board trying to keep my mental health together.

Merry Xmas.

[JoJoloveschocolate in reply to FallingInReverse]

I really feel for you. It’s very hard going isn’t it. I’ve found that an 8 week blood test results never really connects with how I’m feeling. Last time I thought it would show I was under medicated and would need an increase but my tsh came in just under range and my t4 had gone up to 13.8 (i think) from an original low of 9 (7-17 range). I left it a few days and things levelled out again. Now I feel like I’ve been hit by a monster truck…but that’s probably just all the madness of Christmas and being exhausted from all the running around getting things done. At least this year I’ve had more energy to be bothered with it all. I’m doing a medichecks blood test in January just to see how things are going (tsh, t4, t3, iron, and vits) and then I’ll go from there. I’ve stopped trying to guess what it will show. I’ve never been right so far. I think for me there is always a lag between the biochemistry results and the symptoms. I also read that it can take a while for some symptoms to improve. Then pattern seems to be that my t4 goes up with an increase and then drops some time after the 8 week mark/test. I’ve been very, very tempted to give up or mess around with my meds, but decided to just crack-on and push through and be consistent with everything. I thought about increasing meds myself but I know if it pushes my tsh further under range my gp will reduce my levo and I don’t want to go backwards. I’m trying to just trust the process and be positive. I didn’t realise how complicated it would be long it would take to get things right and stabilise, but here we are. Someone in here…I think  tattybogle posted a little “graph” of the recovery process that sums it up perfectly…not a straight upwards trajectory, but more like a toddler has taken a crayon and drawn a mad squiggle! It’s a good idea to peruse the board, I’ve been reading loads on here and storing up the info for future reference. It’s so good we have this place to turn to for advice and reassurance that things will/do get better. Take care and Merry Xmas to you too x

Edited…sorry it was Jaydee1507 who posted the little graph. Sorry, Tattybogle. My brain has been eggnogged into oblivion! x