Does it get worse before it gets better with starting levothyroxine for hypothyroidism ?

here i am Back again after started taking thyroxine 50mg for 1 week for bad hypothyroidism symptoms with a tsh of 9.7(0.0-6.0) ft4 9.5(8-18 range).and now and feeling more awful and achey and exhausted than before just bit concerned but not in a panic is this the norm anyone please did anybody else start off this way? thanks sara

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  • hi i can only say that in my case, i have been on 50 levo for two month that i now feel worse, im at my wits end to know what else to do , i dont have the energy to fight but i think we have to, wish i could help you more but i am new to this as well but hang on in there, people will help on this site just keep asking the questions xx

  • thanks lola sorry to hear you having a rotten time of it as well just a thought im not as far on as you you maybe you do need more levo to get better from what the ladies have told me on here 50mg is quite a low dose and people need a few increases to get it right have you had your bloods redone as yet

    sarax

  • hi sara, had bloods done twice but todays results were no use as nurse took insufficient bloods for test to be completed????????????????????? couldnt make it up could you? was waiting for today as hoped meds would be increased but now have to wait at least a week, junes results they said were normal but on getting print out today it clearly said three abnormal results? i really dont understand

  • yes, it quite often gets worse before it gets better. It can take upto a year to get the levels right and for you to feel reasonably ok again, patience and perseverance is most definitely required.

    For most people the body hasnt been working at full capacity for a while, when levo is introduced suddenly it starts working again, which in turn requires more thyroxine. It seems worse when your on the borderline between 3 and 10 (TSH) you actually feel better when your more hypo, but you do get through it and then it's more fine tuning the dose to suit.

    Hope it sorts you out before too long

  • thanks suzymac really helpful it makes a lot of sense what you said

    sara x

  • Sarah, I'm sorry that treatment for this disease is quite lacking. They don't seem to want to delve into the individual cause. I guess time is money and that is what it would take. When I started on Synthroid I had lots of side effects and they are probably different for everyone depending on how the disease affected them. For me it was muscle issues and I was in a lot of pain but at least my doctor allowed me to increase my Synthroid as I felt the need. They do not do that here or now. Give it some time and most people end up on 100 to 125 mcg. of T4 (sometimes more). If you still don't feel well, consider other options that are voiced on this blog. stopthethyroidmadness.com/m...

  • thanks heloise very helpful im having my bloods redone next week so should give a idea where at i think he got me in so quick for another appointment so i can get on the right dose quicker as am very poorly with it fingers crossed

    sarax

  • Well, that's a hopeful sign that he wants you to feel well as well as look so on paper. Good that you are checking your test results. You have a right to have them and I would keep a log on each and every one of them. Very helpful to compare them over the years. Surprising that some doctors ignore them when they are obviously abnormal. You must call them on it. Thyroid problems have deprived me of much of the quality of life I deserved. It could have been different had I known what I know now. Quite different!

  • all i know sara is this thyroid problem is alot harder than i thought, after all the symptoms i had i was relieved when he said" under active take this you will be fine just stay on it for life", but you have to fight the doctor and the nhs for everything and at the minute i could not fight my way out of a paper bag, can hardly talk some days and cannot assert myself as so fat now i have no confidence, sorry i dont want to scare you off, il get up in the morning and try and fight my way through this, as all of us will have too, i hope your journey will not be so hard , i hope also that you start to feel better soon take care sara, hope this site and kind people give you some hope x

  • lola im so sorry you are feellng so horrid my heart goes out to you its very hard i agree iv only been really poorly since had my baby boy 6 months ago but i been fighting so hard to get the the help i need for me to look after them maybe its making me fight that bit harder because of them. please dont give up im not! and speaking to people on here it does get better but i think you def need a increase till your feeling better or you will stay the same and not get better if you have not got mr tofts book thyroid disorders get it! i found it helpful sadly it dos not have info on why i feel so awful starting levo hence why im here and i bought the thyroid uk help pack has lots of information to help and guidance best money iv spent i go armed with everything in there and learnt about the condition also i take it to my gp now iv found with the doctors that knowledge is power as a lot of them have not got a clue iv been refered to thyroid speciaist also i should be getting increased again with levo in next 2 weeks you got to keep going lola i know its hard but it will be worth it hang in there big hug

    sarax

  • I know exactly how you feel Lola.. at least we have each other online!! :) xx

  • I left it 4 years thinking I was just being lazy and feeling so old (I'm 31) Felt like I was 80. Started on the Levo now but I feel so much worse! Feels like the start of Flu all day :( I just want to scream out - I can't take feeling like this anymore!!!! So horrible. Just have to have patience I guess. I'm so jealous of people who felt great straight away!

  • Hi Sara,

    Some people feel worse initially on levothyroxine till they work up to a dose that suits them. If after a while you are not getting better it is time to look into maybe adding some T3 to a reduced T4. Unfortunately, it does take time, considering it is the active T3 we need for our whole body to work efficiently. Each and every cell needs T3 and levothyroxine should convert to enough but sometimes it doesn't convert efficiently.

  • thanks shaws i think im going slowly in reverse thats why im feeling so bad and the shock to the system of thyroxine as so hypo but im not as bad as last week thank goodness so i think im on the right road now and my ft3 was quite high first blood test so i dont think i have a conversation problem but im going to keep a eye on it for the future i think your right and its the dosage i need to get right am having a increase next week iv been reading mr toft book and feel more confident i will get better soon many thanks x

  • Hi sarah, I was diagnosed Feb this year with a level of 29. I started on 100mg but reduced to 50 mg as I felt really bad. Still had aching joints and muscle cramps but really jittery. Tests now TSH 9 and on 75mg. I feel worse than before I went to the docs. My main symptoms are aching joints, cramps and itching (like needles) all over. Was also on Statins and came off these to see if this helped. Four days after stopping , I had two days completely without pain and itching,. I thought I had found the answer. It was heaven and I now remember how it should be. I will not give up. Sorry if my answer does not help but you are not alone

  • hi stephen sorry to hear you feeling so rotten i am actually not feeling as bad as was iv been doing some research to try understand whats going on i thought it might be maybe helpful for you from what ladies have said on here what makes sense is that you actually can feel worse while your getting back to your correct tsh level when your betwwen a tsh of 3 and 9 yours is still pretty high like mine and why we feel awful i am aching more than before but i am getting another increase next monday hopefully upto 100mg i think its sort of a no mans land until you your on a dose that is correct for you so keep going you are getting there ! the 100mg was prob just a bit much at first and a bit of a shock to your system from what i researched i bought dr toft book on understanding thyroid disorders it s only about £5 and its really helped me understand about the thyroid and what medicaton i need and increases and take it to my gp appointments now and dr toft says that you should start on 50mg then 100mg 4 weeks later then 150mg another 4 weeks if needed until your sorted im having my bloods done every 3 weeks so i can check where im at so not to take to much i managed to find some blood tests from my thyroid from last year when i was in better health my tsh was 2.2 and ft4 14.6 or there abouts of course everyones levels are diffrent and i realize looking at these the are not perfect and was the start of my thyroid problem after having my first child and my 2nd child has made it worse but maybe a blessing as i would never of discovered why i was not 100% but the ranges are so wide how are you ever to know whats right so i found out that having a tsh in the low end range say 0.5-1.5 is ideal for most people and should feel in good health it s ok the doctors saying yo are in range but you must go off your symptoms i really hope you feel better soon i also bought the thyroid uk help pack for about £10 really helpful keep going

    sarax

  • Hi sara, thanks for your response. I did find out from the side effects leaflet that anyone over 50 should start on 50mg. Better late than never. The past couple of days I have felt about 10% better. I now realise that even 25mg can make a big difference to how you feel. I was waiting 8 weeks for next test but will now reduce this. Will get the book. Thanks for your positive response and look after yourself x

  • Hi sara, thanks for your response. I did find out from the side effects leaflet that anyone over 50 should start on 50mg. Better late than never. The past couple of days I have felt about 10% better. I now realise that even 25mg can make a big difference to how you feel. I was waiting 8 weeks for next test but will now reduce this. Will get the book. Thanks for your positive response and look after yourself x

  • I'm struggling with a low start dose Levo for extended time due to age /BP considerations [I suppose]. Got stuck feeling down with neck pain- quite persistent for weeks.

    After reading tips on here I decided to try adding Iron supplements to diet, trying a Spatone sachet, 3 times a week.[It's well absorbed]

    I think this helped, though it could have been co-incidence. neck still persisting at lower level -but due for med review shortly.

    Iron is well known to cause fatigue when low but my ferririn was 74 when last tested -not that low.

    Nutruitional levels seem to be crucial in the thyroid patient esp. under treatment.

    Don't neglect to watch B12, D3 Zinc+copper and Selenium intake/status either.

    I think T3 is successful as it doesn't rely on first stage conversion of the T4 [as in Levo].

    Snag is -T3 is lively stuff to manage and even harder to get given by cash strapped NHS system.

    [I know- enough gets wasted]

  • thanks tegz il keep in mind what you said i never under estimate supplements i think they do help iv read a few book on thyroid problems recently including my thyroid and how to keep it healthy which is helpful and reccomended from that im taking at teatime a multi vit i taking a mega vitiman from holland and barratt which has decent levels of everything including what you mentioned, vitiman e 500mu-1000mul l a day, 1000g calcium and 500mg magnesium iv actually just rang got results from yesterday blood test and my tsh has gone from 9.5 to 3.4 in 3 weeks so i must hopefully be doing something right m really hoping the levo will be all i need to get well again but il just keep plodding i hope next increase will help with the aches and symptoms hope you get sorted soon tegz im aching so much and pains even more on the journey back down to my correcct tsh level so maybe on the postive side your getting nearer your goal all the best

    sarax

    .

  • Thanks Sara- I think your focus on nutrition has helped. You had a high start TSH and getting back is hard going- do you go for the burn or coast in easy.. :) Neither route is trouble free, it seems.

    I have D-P 's book, very good. He stresses that adrenal status is paramount before thyroid can be adressed.

    I have seem though, that thyroid treatment can 'reset' adrenals, also.

    I suppose it all depends if adrenals are prime contributor to UAT, or not.

    Have you tried the online adrenal surveys available?

    I did -and came out on the 'mild' [I think, recovering] side so didn't press for adrenal tests, though I think they have contributed to thyroid [& poss BP] probs in the past.

    I hope you are on the right road -with that T3 reading better.

    The other gem fact I read was that walking [ie:regular low level exercise] helps with the T4c to T3 conversion- so hit them thar hills :)

  • yes its early days il have to hit them hills when bit brighter have a snooze in a bush on the way lol! my only concern and confuses with these blood tests is that the free t4 has only gone up from 9.5- 10.3 does the thyroxine levels(ft4) take longer to stabalize and come up compared to tsh levels readings ?? it is only 3 weeks since starting but maybe there could be a adrenal problem if i dont improve and the ft4 rise so i will def keep this in mind and get it checked at my next blood test hoping there not a problem dont need any more complications

    thanks tegz

    sarax

  • Lots of imponderables there!

    The usable T is the free T3 which [surprise] is not measured by NHS- unless you get Endo involved and he's switched on.

    Private -I did get done, but it doesn't mean a lot, in isolation.

    A lot of hormones get bound to protein and levels depend on uptake,conversion and of course your day to day usage, depending on activity.

    Therefore , no one can say for sure what to expect- just that the NHS don't try very hard to help if you're not a T4 cookie cutter!

    Staying on your own case certainly will pay dividends.

    I'm fairly new myself..

  • thanks tegz it would be great if it was as simple as benig a t4 cookie cutter very funny lol!i had a round of bloods tests done last month before my tsh level soared and was at 1.5ml and free t4 8.5 and my gp did actually test for free t3 and it came in at 5.7 ml which was slighty raised apparently not delved into information on that yet i still not quite sure about the t3 thing , not had 1 done since but i think i will do a round of blue horizon home tests including t3 again if dont get on the right road least this doctor thought of actually testing for free t3 i think having the right knowledge really helps and like you say staying on your own case i really wish you all the best for getting sorted im sue it wont be 2 long

    best wishes sarax

  • afaik- T3 is most useful in diagnosing over medicating with T3 med. -as this is a crunch point, if too high.

    The other way it can be used is to compare FT3 with RT3 and get the ratio. From memory, I think >10:1 is rising on the right side.

    RevT3 test is expensive to get done & needs immediately centrifuged, frozen samples according to my advice.This one can show up resistance to tissue take up, I believe. These are way ahead of what the NHS will do as anywhere near standard procedure [more's trhe pity]- even if expensive the savings in suffering and wrong treatments would be a net gain.

    The NHS doesn't have the freedom to go there- being a political football for so long. No doubt many medics would like that too- it would certainly up their status, in the eyes of many, and remove a lot of contentious meetings with patients.

    Labs also seem to have a stranglehold on what tests get done.

    I have a blood test Monday.

  • best of luck fr monday tegz hope you get somewhere and can get bit more sorted thanks for all the infomation appreciated

    sarax

  • Ah the pains...amazing so many GPS have said pains must be something else...how many of us have neck shoulder and knee pains and aches? I have had these on and off for three years. Oh for the sun to be on my back.

    3 years ago gotHashimotos/ thyroid it's.

    Had Levo gradually up to 50mcgs. OK for 3 months then hit the wall. Increased to 100mcgs OK couple of months then hit the wall. 3 years after being on the floor now on 150mcgs for 4 months. Left with bouts of bad tiredness mornings can be horrid. The neck pains and shoulder aches can get you down too (those symptoms that GPS fail to link for some reason) . I have waited 4 months and feel surely my body should have adjusted , or does anyone know it takes longer when you are supposedly on the right dose?

    Now seeing Prof in Oxford out of desperation , we are about to try an experiment taking top 25mcgs off t4 and replacing that with 5mcgs t3 every 8 hours.....let's see.

  • Hi there all I have been reading your posts and I am also in the same boat as most of you, I was diagnosed about 3 to 4 months ago with hypothyroid and I have been moving up the doses every 6 weeks and hoping for the best I started on 25 mcg and I am currently on 75mcg for one week today :D so far there has been progress and I remain hopeful because I get a lot of mental and mood symptoms. I am 21 and male which made the doctors rule me out for thyroid trouble for 3 years even though I had all the symptoms. my last TSH reading was 2.1 (0.27 - 4.2) and my doctor says there is room for improvement so we will continue to up the dosage every 6 - 8 weeks till I feel well again :) every time I start a new dosage the first week is strange I get a lot of unusual feelings.. and i get a little overly emotional :P

  • Hi all looking for some guidance on my situation. I was initially diagnosed with hypo-t when I was 12, but stopped the meds when I was around 14-15 (22 now) because well I was young and stupid and knew nothing about hypo-t, I just knew it was a drag to take pills. So I suffered with the hair loss, weight gain, fatigue, pretty much all the symptoms until now. Went to the dr. Cuz the symptoms were getting to me pretty bad a week ago, the dr made me do blood work (still waiting) and gave me a prescription to Levo which is I believe 0.1mg which isn't much right? Well anyways he gave the prescription on the spot because I told him the symptoms were pretty bad. This is the 4th day of my on them and I'm experiencing body aches, moodiness, anger, insomnia, and I hear my bones make cracking noises a lot when I move. Not sure if this is normal, and I just need time to adjust because I haven't been on them for a really really long time, but idk I think I need some advice. Thnx. Sorry for the long story.

  • It take 4 to 6 weeks for your body to stabalize. T4 has a half-life of 7 days (meaning for every 7 days, the first dose you took will be reduced by half due to metabolism). You must take it consistently for at least 4 weeks to get close to what a "final" result on that dose might feel like. Don't despair, keep at it. Trust me, having been in your situation once, you want to be as consistent with this as much as you can.

  • OMG this blog brought me so much I'm 5 months pregnant and my doctor put me on 50 mg of Levo a couple of weeks ago but after explaining to him it made me even more fatigued heat up nachos to 100 milligrams which I'm totally freaking out about taking I have no idea how I'm going to function on this medicine if I couldn't function on it at 50 milligrams so from what I'm seeing it takes time to get in your system but I just don't know if I can deal however I am very happy I found this blog I thought it was just me thank you ladies wish me luck LOL

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