Hi I feel terrible today chills Inside low moods tearful .I can't walk since July last year and mood changed .Dr started me on levothyroxine in May this year at start on 25 mcg I couldn't tell.any difference 50 as well was looking forward to getting to the correct dosage .but after reviewing my test results on the phone August the Dr decided to leave me at 50 I had been on those since about end June . And was going to retest in about 8 weeks .After neck back neck and tooth pain severe left side I visited a diff Dr who I told that I thought I was u ndermedicated .he instantly said yes its nit High enough it won't ever get better at that dosage upped it to 75 .that I took but felt rough still .neck pain at night is unbearable. I am struggling to sleep .and my ability to walk is worse throbbing pain knee and thigh foot pain I have had since November last year .assumed was plantar fascitis type things .Dr hasn't examined it I now struggle walking at all esp today .last night was pretty bad coughing up mucus excessively fir over 3 years. I now read its z thyroid thing too .and the walking problems could be tho had mri spine few times no explanation has been given why can't walk .I cam walk but feel very unsteady and weak .little steps so end up staying home I used to do 12 miles walks and hiking loved it .holidays with family I am now feeling v down about being a nuisance hubby is very devoted and helps me but I feel I am holding him back now . I have taken thyroxine before fir 5 years . Ending in me having to come off them . Agreed by a specialist and then on thyronine which also ended with me not able take them specialist didn't have any answers so now I am having to try them again and was hoping no I'll effects .I feel I wasted 7 years if my life being ill I ws perfectly well and had never seen z specialist in my life but a gp picked up on thyroid level ..I didn't want to take them but threat.of being life threatening I had no choice then I'll from day one I am worried I will be repeating this a third time . I used to go cold had rashes heart racing couldnt sleep . Dizzy .I now have tinnitus slight hearing loss left ear abd felt had weight gain after my first operation last March before that I was fine. Gall bladder problems.led to operation .felt best ever after op no thyroid medication for over ten years long story but now am I likely be under medicated still ? Do others feel unwell I am thinking quality life wasnt great not walking nit knowing why since ten weeks after the op . But now mood changes inflammation head joints etc pain foot .is this really improving things . Feel my last piece 9f quality life has now gone I am not myself and want to be not influenced by mood swings and sadness . .hubby says stick with it but am I not still on a low dose if going cold etc thanks
Feeling mood changes and questioning why ..I ... - Thyroid UK
Feeling mood changes and questioning why ..I just want be myself again .
I must add I was cold dizzy rashes not sleeping as hyper heart racing bone aches etc after taking thyroxine low dose 20 years ago not before x
Levothyroxine doesn’t “top up” your own thyroid output…..it replaces it
Absolutely ESSENTIAL to be on high enough dose
75mcg is only one step up from starter dose and unless extremely petite very unlikely high enough dose
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
cks.nice.org.uk/topics/hypo...
bnf.nice.org.uk/drugs/levot...
nhs.uk/medicines/levothyrox...
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease …..and when on inadequate dose
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Are you in the U.K.
approx age?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Symptoms indicate you are undermedicated.
Follow SlowDragon's advice carefully....and be patient.
Your situation is not so uncommon when titrating the dose. When you increase dose....say 50 to 75mcg the body can initially respond positively but can quickly realise it needs more hormone so symptoms persist. It's the body asking for more hormones!
People often conclude at that point that the medication isn't working and wrongly stop taking it.
Doctors don't always understand thyroid medication
Your husband is correct....stick with it! There is no quick fix....but with the correct dose symptoms should be alleviated
Do you have lab results you can share with us.
If you are hypothyroid you cannot physically become hyperthyroid.....but the symptoms can be very similar!
I've gained a bit of weight and my endo lowered my dose! But then it was obvious that she has started diagnosing via the big pharma algorithm on her computer, as are most useless doctors. At the end of my last appointment, she suddenly looked at my test results again and mentioned that my glucose was a bit high. Then she looked at the computer, input something and said I had to cut out fruit - too much fructose - and added that I could have ONE apple a day, 50 grams. I looked at her in disbelief, thinking about my raspberry 'plantation' in the garden, it being summer and fresh fruit season, and wondering why she didn't suggest cutting out chocolate, cake, desserts, sugar generally. Honestly, if we couldn't come on here and laugh about some of these things, we'd be crying! And she used to be decent...
Higher HBA1C is common hypothyroid symptom
thyroid.org/patient-thyroid....
endocrinologist sounds like diabetic specialist (vast majority are)
Levothyroxine doesn’t “top up” your own thyroid ….it replaces your own thyroid …..because once you start taking it TSH reduces ( the message from pituitary to tell thyroid to make thyroid hormones) …..so your own thyroid stops/reduces its output
It’s essential to get steady increase up in dose
Typically takes 6-12 months to reach correct levels
Almost everyone on Levo will eventually be on approximately full replacement dose when adequately treated ……that’s normally about 1.6mcg per kilo per day
Stepping up in 25mcg …..retesting 2-3 months after each increase
I am with you all the way these tablets should be flushed down the toilet they are poison.I felt fine until like you my dr found out i had a underactive thyroid.I went through hell for about nine months i had so many symptoms i felt suicidal phoned the dr crying almost every day so he told me to stop taking them. And go back for a blood test in six weeks it came back very bad i don’t know how low it was but he was very worried and put me on a different brand. I am coping better on this brand but i’m still not as well as i was before i started on any of them.I want to stop taking them i feel a lot better with out them but he says i can’t i have to take them. I wish he would walk in my shoes he would definitely do something about it. What can we do i don’t know ⭐️
I appreciate that you really, really did not get on with those tablets. But some people find they change night to day in terms of their health.
It really does not help to dismiss them as being poison. Even if that is how YOU feel about them.
And different makes can be surprisingly different to those taking them. But I do not know of any way of predicting which makes are tolerable - and which are not - unless you know you have a problem with one or more of the excipients.
'these tablets should be flushed down the toilet they are poison'
We do completely understand that you've been going through a really bad time, and hope that things will get resolved for you very soon.
But to state that levothyroxine tablets are poison is not helpful to anyone, and just might cause unnecessary anxiety in new members here.
Millions of people around the world take this life saving medication every day and live well by doing so.
I am so sorry if i upset anyone it wasn’t meant too it was just something i felt them to be for me.Apologies to anyone who i might have offended they are not poison it was a silly thing to put ⭐️
I am afraid that I also said that and still do. .I think I didn't need them the first time as that's my only explanation . How affected me. . Not anyone else I knew or spoke to on forums either . I was so scared to take them again but did and had no effects this time so relieved and i can only say that I must need them. I realise others benefit and that's brilliant but I searched high and low for anyone who might have felt the same as I did if no-one said it the few of us suffering differently would be very alone. So I am glad to hear from someone felt the same. X
I definitely felt the same i was so ill i was in bed for 3 weeks i thought i was going crazy i almost phoned 111 one morning i thought i was having a heart attack.The Dr has changed my brand and i’m glad to say i am copying a lot better ⭐️
Maybe Levo isnt for you, not everyone gets on with it, we have several members on NDT or Levo and T3. Although Levo monotherapy is the recommended treatment and millions of people take it daily, and many do very well on it. Or it could be the brand that is the issue.
Its not for everyone. But if after 6 weeks of not using it your blood results were bad then that shows a clear need for some form of thyroid replacement.
Thank you i have changed brands and i am feeling slightly better i’ve got a few side effects.But i will try to cope with them ⭐️
I mean, if you’re truly hypothyroid then levothyroxine is not poison, it’s a life saver. Sounds like you were not on a high enough dose and badly managed by your GP. But to stop them altogether is dangerous - if you don’t take it you could die
I got told off for saying that they are not poison it was a silly thing to say. I’m not as bad as i was the dr changed the brand and they don’t have as many side effects.Thank You ⭐️
Hi Janine, I’m so sorry that you feel so unwell. It can be really tricky getting doses right and when anxiety levels are high it makes taking medication a bit of a minefield - we know we need it, but we don’t want to take it and this thyroid medication takes time to get right usually. Take care and use this community for support.
Results - is this why I have been feeling worse again?
Hi, I have had low mood symptoms for two years and fatigue since March 2015. My results show low T4 and low end TSH. Endos refuse to treat?
And again..questions about how I'm feeling
thyroxine dose in the morning 
Tablets not working
