Started levothyroxine in July this year, was suffering from horrendous headaches daily and so tired.
According to my GP my thyroid levels are now in the normal range but I feel awful still. Lethargic, exhausted, so cold, aching joints, no concentration, just have to sit or lie day during the days.
I have two children under the age of 12 so really struggling and GP Doesn’t know where to go with this. Any advice appreciated, will I ever feel normal again.
Welcome to the forum
First a few questions
What were your results BEFORE starting on levothyroxine
What dose levothyroxine are you currently taking
Which brand
How long on this dose
What are your most recent thyroid and vitamin results and ranges
Plus have you had thyroid antibodies tested?
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
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
4 months is still quite early days in your thyroid journey.
I was diagnosed in 2020, my children were 2&4, I am now well and able to plan a busy half term, including taking them to London on my own.
I remember those days all too well; dropping them off at school/preschool, coming home and sitting on the sofa all day until pick up. I wouldn't eve have a cup of tea all day because it took too much energy to stand long enough to make it.
Learn as much as you can from the fantastically knowledgeable people here. They helped me regain my health when the medics stood in my way. You'll get there.
I'm so glad you've found the forum. ❤️
Thank you so much for replying, I actually feel overwhelmed and emotional that you understand, thanks exactly how I am, weak, lethargic and can’t even be bothered to make myself lunch as I feel too tired.
May I ask, did you just improve month on month? I am now on 100mg of levothyroxine and apparently this is the correct level and working, do I just stick with it or can you recommend I do anything else or get anything else checked?
Thank you so much again, I can’t tell you how much I have needed to hear a message like yours.
Do you have your latest blood test results?
Unfortunately, medics don't know much about thyroid health and treatment. I very much doubt you're on the correct dose because you're still symptomatic.
My journey has been a difficult one but in the end I went to a private consultant. Two in fact, but I've made more progress in the last 6 months than I had in the previous 2.5 years.
Getting my vitamins optimal has helped me too.
I am now on 100mg of levothyroxine and apparently this is the correct level and working,
What EXACTLY has been tested
Just testing TSH is completely inadequate
So …..First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Hello there!
I wondered if you could help me, Iv got a copy of all my blood tests since August and can’t see what I am supposed to be looking for, hence not sure I am being tested for the right things. Feel dreadful today and fed up of this, if I send you a picture of my results, would you be able to advice as to if I have had the right tests?
Hi 😊
This is my first post, I just joined the forum today. I've got 4 kids 6 and under, I had bloods taken a few weeks ago because I've been feeling ridiculously tired and achy, came back last week that my free t4 levels are low and also vitamin D and a few other things were abnormal so I've just had more bloods done today. Been reading up on underactive thyroid and I have all the symptoms. At first I was starting to think I could have Fibromyalgia (had an emcs in December last year, have PTSD and severe anxiety/depression ever since). I feel like a really rubbish parent at the moment because I have no energy to do anything, 3 of my kids are autistic and youngest is 10 months old so I'm finding it a battle, I just want to feel normal again.
Sorry I have no advice but I can sympathize x
Oh bless you, you sound like you’re struggling big time too. I understand why you are saying you feel like a rubbish parent, I do too at the moment but your not feeling well so don not give yourself a hard time, your children and loved, fed and warm so they are happy I’m sure, if they don’t have as many trips to the park at the moment it’s ok.
Sending hugs x
Mummybear0213
please write new post of your own with info on dose, brand etc plus results and ranges etc
Members can advise on next steps
Please post your blood test results here so we can advise you as well. My biggest regret in life is not finding out I had a thyroid problem until my kids were 9 and 6.
I am so sorry you are experiencing this. The best thing you could have done is join the forum. My own thyroid journey started a few months ago after wanting to have a child (all in profile).
I do not have children yet, and reading experiences like yours should scare me somewhat at least. But, I am not in the least bit scared. The fact that you’ve reached for support via this forum shows just how strong you are and what a fantastic parent you are! It may not feel like it, but that is fighting spirit you have! So, if anything, you give me hope.
To put it bluntly, you are not OK as you still have symptoms. There are many reasons this may be, so you must start by posting your latest full thyroid panel results. If you don’t have them, then get them privately and post results so the knowledgeable folk on here can help.
Now, to put it even more bluntly, you will get through this, you will be OK and I write this while I feel so cr@p myself. first things first, be kind to yourself and take some more power back for your health. You’ve taken the first few steps already.
Hope that helps. We’ll get through this.
Best.
just briefly to say ….30 years ago when I was first starting on levothyroxine and I was very unwell ……I also had 2 small children under 6.
I now have two grandchildren …..and I am rushing around happily looking after them
It’s essential to address the whole situation caused by thyroid….NOT just testing TSH
One step at a time
First step starts with getting full thyroid including thyroid antibodies and vitamin testing
1) fine tuning dose levothyroxine and often necessary to stick on one brand levothyroxine …
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour
No other medication or supplements within 2 hours, some like iron, magnesium, vitamin D, HRT or PPI at least 4 hours away
Many people find it more convenient, possibly more effective to take levothyroxine at bedtime
2) getting vitamin levels tested and supplement to bring to GOOD levels
3) gluten and/or dairy free often gives enormous benefits especially if cause of thyroid disease is autoimmune
Hi there. Boy do I know how you feel!
When my son was 18 months, climbing up bookcases and out of windows (yes!), all I could do was lie on the sofa all day long. It was the biggest effort once a day to work up to taking the dogs out with my son for a midday walk, and then back on the sofa until my other half came home. I remember thinking “what’s wrong with me? No one cares or knows”. I’d been going to the doctors off and on by that point for about 8 years (!!!) Complaining of tiredness, low mood, and awful global joint pain. Then a proactive physio asked for thyroid and vitamin D bloods. And it came back positive. Thank god for that physio.
Fast forward a year or so, and I’m still feeling like pants on Levothyroxine, being told I’m now fine and my bloods are within “normal range”. Load of rubbish obviously. Pushed for an endocrinologist (as per NICE Guidelines - read them asap). She gave me T3 and I started to feel better. Then she left to have a baby and new one didn’t know about thyroid disease (ops). So then went private. Haven’t looked back. Mostly successful. And he also helps with other imbalances like vitamins and minerals, hormones (testosterone etc), and now menopause. If you’re anywhere near me I can recommend him. He also bosses the GPs around so they do the right tests and prescribe the right meds! He does so video/calls as well. PM me for details.
You’ll get there don’t worry. This is a temporary blip. But you need the right medic in your life ❤️ And us of course 😘
This sounds encouraging! Have PMd you..
I’ve pm’d you for details of the consultant x
I would love a PM with his details too please! Sounds just the person I need!
Is live these details too.
What a helpful response, you have given me so much hope! Your Consultant seems to good to be true, I’ve seen one NHS and one privately, no help other than a prescription for t3, for which I was grateful. But I still feel very unwell, I just wish they would look at the bigger picture as your Consultant does. I would be really grateful if you would PM me with his details? He seems to be just the person to help me. X
Hi, I feel your pain. I’ve had a constant headache since taking levothyroxine and there seems nothing they can do about it. I’m on the waiting list to see an Endo for a second opinion as I am fed up. Just had five months off work due to this and feeling generally rubbish everyday, aching feet, muscles …. The list goes on. I’m now on 100mcg per day. It should have been 125 every other day but that sent me hypo resulting in racing heart high BP and massive anxiety that something bad was going to happen.
Good luck with your search for answers.
I would stress the importance of getting vits, mins and iron levels above mid range, GP's don't understand the importance of this, levo needs all these to work, low iron can cause headaches, aching feet and muscles points to low magnesium and Vit D
Decent supplements will help especially when you just haven't the energy to eat properly 🤗
morning it may be the brand of thyroxine you are using. Try a different brand and it may help
I just wanted to reach out to offer my sympathy. I truly believe only other sufferers genuinely know how you feel. The amount of times I’m told by others “that they get really tired too” and I’m not doubting they don’t, but I liken thyroid fatigue to being hit by a bus. I set my alarm at least an hour early, I cannot just get up when the alarm goes off, I need an hour to wake up because it feels like something is sitting on me. However, once I’m up, I try to not sit again until I’ve done everything that ‘must’ be done because once I sit I’ll fall asleep. I’m sending you every sympathy, but please don’t feel guilty, just sitting watching tv with your children is precious time x
Just reaching out with sympathy, it's absolutely awful feeling as you do with young children. I can't give any helpful advice - in my case I needed T3 not Levothyroxine. Our children do survive, mine, now in late 30s and early 40s, feel very loved and are secure even though as one put it "all she did was sleep all day". Before T3 the thing that helped me most was an ME/CFS clinic where we were told "never do more on a good day than you can do on a bad day". Easing up on what I expected of myself made a difference to my mental health, no more "bad mother" "lazy" etc self-criticism, instead loving kindness and understanding. Physically I did improve but it was the psychological difference that was of most value at the time. Thinking of you and hope you find something that really helps soon.
will i ever feel alive and well again
Do you ever get properly well with hypothyroidism?
High DHEA and High Cortisol Levels. Will I ever be able to tolerate T3 or NDT?
Help me please will I ever feel like myself again
Will I ever feel ok again?
