I was diagnosed with an underactive thyroid back in 2018. I assume it's autoimmune related as my anti body score was 410.8 but it's never been stated as such. My mum also has an underactive thyroid which I think is the main reason they started me on levothyroxin in the first place; 2 years before in 2016 when I was at uni the gp there said I was borderline, so just needed to keep an eye on it despite having symptoms, and my sister who is a medical student said my results look like I was subclinical when my GP started me on 100 Levo.
Since I've gone down to 50, up to 75, then back to 100, then 125 where we've kept it for quite a while (I've been feeling best when my TSH is at 0.6 which I know is on the low end but anything above that and I feel horrendous). Last year I had to have my gallbladder removed due to gallstones despite my age (26). I am overweight but not so much so that it should have caused gallstones. I did however read an article stating that having untreated subclinical hypothyroidism can cause gallstones so there's that.
Over the last few years my symptoms have become really bad. Sometimes I wake up at night because of joint pain (mainly in my hands and feet). They also swell up in extreme temperatures. Headaches, concentration issues, feeling cold, dry skin eyes and mouth, constipation, tired all the time even when I've slept through the night- typical underactive thyroid symptoms. I had tests done and TSH was 1.6 so I thought maybe it needed to be increased. I'm now on 150, my symptoms are still getting worse and worse and after 3 months my blood test is now indicating an overactive thyroid. During that time I've gained half a stone been sleeping the majority of the weekend with no relief in symptoms (although I have been going from feeling cold to hot to cold, constipated in the morning which can go the other way towards the middle of the day, but i don't know if that's due to me having taken my medication or coffee or dairy).
I've had my vitamins checked, cortisol blood tests, inflammation markers, all back normal. I make sure to leave an hour before I eat after taking my medication. I've been taking B12, vitamin D, cod liver oil, cut out dairy, gluten, etc. I used to be really active (running 3 times a week, martial art for 2 hours 2-3 times a week.) My weight didn't go down but at least I felt good. This stopped over COVID and after surgery, and now my joints are so bad I can only go for long walks at my best.
I hated my job, so thought maybe this was my mental health, but I've started a new job since which I'm really enjoying and there's been no change in symptoms.
I've been referred to muscle skeletal for the joint pain now and have an appointment next week with my GP where we'll most likely lower my dose back down to 125. I'm just feeling so annoyed. I was hoping my bloods would at least give some indication as to why I can't function but they're all normal. My sister said sometimes with an underactive thyroid the symptoms don't go away and there's nothing you can do and I really can't live with that. I feel like I'm doing all the right things but nothings working. Sometimes it feels like everyone thinks I'm making it up but I'm not. I don't want to be ill. I don't want to be 27 with just enough energy for my 9-5 job where I have to sleep the entire weekend in order to function for the week with any spare time I have trying to claw back energy levels. And I don't want to be on antidepressans. I have plenty of friends who suffer from depression and this isn't it. I am single, have no children. I have no other reasons to be feeling so exhausted and out of it all the time.
What do I do?
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BluePumpkin
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Welcome. Firstly you need to get a print out of the blood tests your GP has done and post them here with the range of the test, in brackets. Understand that GP's dont get any training in nutrition and what they say is OK, likely isn't. If you don't have OPTIMAL results for your vitamins then your thyroid hormone can't work properly and you get symptoms.
This goes for thyroid results as well. They think the TSH is the best indicator of how you are and ignore your symptoms which is wrong. The best indicator as well as symptoms is a FT3 result that the NHS don't even test.
First step is to get copies of your most recent test results
See EXACTLY what has been tested and just as important what hasn’t
High thyroid antibodies confirms autoimmune thyroid disease, also called Hashimoto’s
Do you always get get same brand levothyroxine at each prescription
Do you take levothyroxine waking or bedtime?
EXACTLY what vitamin supplements are you currently taking
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.
Thank you! I've posted my blood results in the thread so I'm not copying and pasting the same reply.
Vitamins- I take the Kirkland D3 (2000 IU) x2 - I was on prescription strength Vitamin D in the winter then continued with the Kirkland brand afterwards.
I've been referred to muscle skeletal for the joint pain now and have an appointment next week with my GP where we'll most likely lower my dose back down to 125.
Refuse to reduce dose levothyroxine based just on TSH
You’re only over medicated if Ft3 is over range
Insist on full thyroid testing….TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12
ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Many Hashimoto’s patients will have very low or suppressed TSH when adequately treated
If GP not happy request referral to endocrinologist of your choice
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who understand Hashimoto’s and will allow low TSH…..
tukadmin@thyroiduk.org
Comprehensive list of references for needing LOW TSH on levothyroxine
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
I've been tempted to try going private - I have enough savings to pay for a private GP appointment. I wasn't sure whether I'd be able to ask to be referred to an endocrinologist as my bloods are coming back in range. I read articles from the US that said you should really be referred but that's the US.
I don't know whether asking to try NDT would help, but I know GPs don't prescribe that as studies show NDT doesn't make really difference compared to levothyroxin.
Okay, sort out vitamins first (check B,D, Folate, Iron?) 9am Monday bloods, 24hrs away from last time I took my medication. Check for coeliac and I'll give splitting up my medication a go!
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
REMEMBER.....very important....stop taking any supplements that contain biotin a 3-5days before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Hi, thank you both so much for your quick replies!
I'm not gluten/ dairy free but I know they can cause inflammation so I cut down on both to see if it'd help (it didn't)
I have access to my blood results through patient access. I wanted to post pictures but it won't let me add more than one so I'll type them out.
These were done last week:
Free T4 was: 20.80 pmol/L with a stated range of 9.01 - 19.05
TSH was: 0.02 mlU/L with an expected range of 0.35 - 4.94
In April the TSH was 1.68 up from 0.63 (which is where I am usually) in January. My T4 hadn't been tested.
B12 (done in July): 463 pg/ml normal range stated 187 - 883
They've never tested my T3 but I did try out medichecks in May 3 weeks after I started my new dose so really it was too soon. They flagged my folate so I went back to my GP to test for that (among other things) but I can't find a result for it.
I'm a meat eater but do limit how much I have - I've been trying to cut down on portion sizes etc due to my increasing weight which isn't helping my joints.
I'm going to confess - I haven't started taking a folate supplement. I asked my GP whether to start taking one and they said to do the blood tests first before doing anything else. Then the folate test didn't show up on my record so probably was never done, and like an idiot I forgot about it
If your last blood test for thyroid was at midday I would refuse to change dose and ask for a retest. This time do it fasting, 24hrs after taking last levo and as close to 9am as possible. Probably won't need to chnge dose on that result.
Folate deficiency can feel a lot like being hypo, many similar symptoms. That might be your problem but you also need B12. A B complex is whts recommended here, like Thorne Basic B. I'd retest after a few months on that. Your result needs to be 50%+ of the range. No need for a private GP til you've got that sorted.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
That’s really helpful thank you! I'm constantly researching and there's so many things to think about it gets overwhelming sometimes
Ferritin from medichecks was 101 (range 13-130)
I asked the GP to check my folate after the medichecks results but I've checked my record and can see it hasn't been done. I'll ask them to test this along with the D and B12.
My most recent test was done at 12:00 - I'd gone to see the paramedic so it was a random spur of the moment decision to test it based on me telling her about my symptoms. I take my thyroxine first thing in the morning so definitely less than 24hrs.
Suggest you get FULL thyroid and vitamin testing done correctly
Test early Monday or Tuesday morning, ideally just before 9am and last dose levothyroxine 24 hours before test
Come back with new post once you get results
Have you had coeliac blood test?
If not get a coeliac blood test done BEFORE trialing absolutely strictly gluten free diet
Once all four vitamins are optimal
If still have symptoms
Look at seeing recommended thyroid specialist endocrinologist for trial of T3 prescribed alongside levothyroxine
Private prescription enables access to Thybon Henning 20mcg tablets T3 via specialist U.K. pharmacies. Cost 50p -60p per tablet. Typical dose of T3 is 5mcg 2 or 3 times per day
My most recent test was done at 12:00 - I'd gone to see the paramedic so it was a random spur of the moment decision to test it based on me telling her about my symptoms. I take my thyroxine first thing in the morning so definitely less than 24hrs.
I just want to chip in and agree with SlowDragon- Gluten-free is ONLY effective if strictly. I was sceptical but receptive when I received this advice almost 2 years ago. I also virtually cut out dairy. It took a few weeks to start feeling the benefit but wow 😮
When I got the ‘go gluten-free’ advice is was put in a way that will never forget
I was told- it’s like pregnancy- you can’t be a little bit pregnant 😂 in the midst of so much information that nugget lodged in my foggy brain with ease. I hope you get sorted and make sure symptoms lead and lab work follows 😉👍
I only recently found out about going gluten and dairy free - I'd like to try it out and see if it helps! Just got to try and be a bit more disciplined!
The warburtons GF soft white squares and brioche squares are fab as bread and toasted - freezer friendly.
Promise bread makes a lovely soft bready sandwich- I cannot tell the difference with either and the latest incarnation if gluten-free pasta in Sainsbury in pink wrappers is fab it has the lovely springy chew that’s been missing for so long! I don’t feel denied at home just a pain when we go out but I like cooking anyway. 😋👍
Oh and gluten-free speckled hen! I even make my own bhajis 60 - 100 at a time - freeze lovely!
Very sorry you are experiencing such problems - one suggestion I would make is that you are taking cod liver oil as well as Vitamin D - this can build up in a 'thyroidy sluggish liver' and can cause the joint pain you are experiencing - cod liver oil is quite a potent product - we used to take it when we were kids but there again a different world then.
hi I can’t comment medically only that I am experiencing similar. I have gallstones and pain and have had extensive investigations lost 2 stones in weight last year in 6weeks nothing untoward found except I had H. pylori which was treated. Started to add a little weight but have a pain down right side into pelvic area but they say not gallbladder.
The tiredness etc you experience is how I feel. I am double plus your age but it’s really since after many years I was diagnosed border line when been under since the 80’s!!! But then they said over then back to under. Still on constant 100 as told you’ve been on this for years so doesn’t explain your changes !!!!
I am now on antidepressants, covid made be agoraphobic but I’m not now, but the tiredness etc was diagnosed as depression.
At your age feeling like you do I sympathise extremely. I follow a low FODMAP diet as I have severe food intolerances this was diagnosed by previous doctors/ hospital in a previous living area the doctors I have now are great don’t get me wrong and so careful.
I hope you get some respite and feel better soon good thought are sent to you.
You have my sympathies! It really is awful - I wouldn't wish gallstones on my own worst enemy. There's a study I read that says being borderline underactive affects how you process fat which makes it more likely for cholesterol to crystallise into gallstones. Gallstones is really the worst pain, I was lucky - went straight to A&E and was booked in for surgery 4 months later. I had had the pain before and when I told the A&E doctor I had just ignored it the last few times he looked at me like I'd grown an extra head! I just thought it was a trapped nerve until I had such a bad attack I couldn't even hold my phone when I called 111 the pain was so bad.
The tiredness I'm really struggling with the most - not having the energy to do much when you have a whole list of things you want to do. That happened to me but rather than depression, COVID made my social anxiety worse, but as soon as I started going back into the office again it got better which is odd considering you'd think socialising would be the worst for social anxiety!
I've never heard of FODMAP but will look it up! I hope you feel better soon! It's been really great to find this space and talk to people who are facing similar things.
just a small input. I used to suffer with lots of inflammation but since giving up nightshade veggies, potatoes. I also avoid lectins unless cooked in the pressure cooker. Also I don’t eat fast food or foods with preservatives. My weight came down as I felt like moving more. Selenium also helps thyroid function.
Thank you! This is really helpfully and certainly something I'll have to try. I've been having lots of issues with joint pain so appreciate the help! 😊
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