Hello everyone. I was diagnosed with thyroid problems earlier this year but since taking Thyroxine - 50 mg per day am feeling my old usual self. I have Hashimotos, although no medical person has diagnosed this - my bloods speak for themselves.
In the last month I have started to get pains in my wrists and ankles and sometimes my knees. I'm 60 but apart from the thyroid issues I have no other complaints. I seem to have worse pain in my wrists during the night and last night my right wrist was so sore, it woke me up several times. It was a very cold night and I did feel cold during the night despite being wrapped up.
I tried to ring my Health Centre this morning to book an appointment but as usual the lines were engaged from 8.30 am until 9.15 am and then the message said all the appointments were filled for the day. I left for work late in order to do this - and can't do this every day - so I don't know when I'll get an appointment.
Just wondering has anyone else experienced this. Is this just another symptom that I hadn't experienced to date. I used to get the odd ache and pain but now this is constant. The fact that I'm feeling okay every other way makes me wonder am I starting to get arthritis or something. Any thoughts would be appreciated. Thank you as dear only knows when I'll get an appointment with the GP.
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Sunflower535
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Chances are you need an increase in T4 unless you are petit? When was your last blood test?
Have you had your Folate, Ferritin, B12 and Vit D levels checked? Low magnesium can also make you creak
February results showed your B12 and Folate on the low side have you been supplementing with a B complex?
Edit... just pulled up your latests result from you Bio (very handy)
Medichecks results Early October 2023
TSH - 2.88 (0.27 -4.2)
T4 - 21 (12-22)
T3 - 4.3 (3.1-6.8)
Thyroglobulin 177 iu/mlmax 115
TPO 466 (less than 34)
Late October 2023 - GP
TSH - 2.65 (0.27-4.2)
T4 - 21 (12-22)
These show that you aren't converting very well as your fT3 level remains low whilst fT4 near top of the range ( I'm assuming you are leaving 24hours after levo before testing?)
You need to request a referral to Endo to ask for a T3 trial 🤗
Yes Eeyore100. I am doing everything by the book - the way I am told to do on here. I have gone gluten free but may have slipped a bit at the weekend by eating something with gluten in it. I will endeavour to get an appointment with my GP but that is something that is nearly impossible to get and then I was made feel guilty by someone who asked was an appointment really necessary.
I don't know if your GP has a decent website? Some of them you can ask for a referral online... this sets the ball rolling without all the other nonsense
I would suggest asking Thyroid UK to send you the Endo list and see if there is a known one in your area and ask specifically for them
The only thing I can do online is order prescriptions. They are behind the times at my practice. If I was completely strict with Gluten and cut out dairy would this help my T3 to convert better or do I have to start T3 for that to work. I think if I could get an appointment with my GP I would push to see the Endo. He was the one that put me on Levothyroxine at the start - my GP under pressure from me referred me to him. She said I wouldn't hear from him for about a year but I got word back in 3 days at that time to start Thyroxine. Thanks again Eeyore.
Hmm.. I can order prescriptions via Systmonline or NHS app but if I go to their actual website it has other option... are they part of a group of practices they might have a group website?
Eeyore,, you might have hit the nail on the head. I don't take much dairy but last week it was so cold here, I was having a hot chocolate made with milk of course every day. I was blaming the cold for the worsening pain but maybe it's the milk. I rarely eat cheese and have stopped yogurt too. I don't drink tea or coffee so never need milk for that.
If I do decide to cut out dairy too, is there any other milk I can use to make a hot chocolate that wouldn't be as bad as milk - what about goats milk. I can't imagine any of the other milk such as Almond would taste that nice.
You might have to try a few, some people can do Goat I can't do any of them as lactose and casein intolerant...I like Rude's Tiger Nut Drink for hot drinks, almond milk curdles in hot drinks like a snow dome🤮
Might be worth asking to swop to lactose free levo?
I was on Mercury Pharma until recently and then changed on to Accord. That's when things got worse!!!! I wonder does Mercury Pharma have lactose. I know accord does!! Oh maybe I'm getting somewhere now!
They all do apart from Teva which many don't like as it contains mannitol and acacia (some people love it) and Vencamil which thinking about it only comes in 100mcg at the moment and some pharmacists won't allow splitting!
There has been some talk about Accord being under powered recently
Maybe that is something to do with it. I was annoyed I didn't get Mercury Pharma as I was doing so well on it and still am doing okay but for these pains but the Pharmacy is nearly as awkward as the GP. Thanks for all your help. I have a lot to get thinking about and I am going to be more vigilant regarding gluten, will try and cut the dairy starting now and see how I go. I know getting an appointment is going to be a nightmare. Tried before and then gave up ringing them. If I didn't have Thyroid UK dear knows where I would be. Thanks again.
(But avoid the Barrista one ….has sunflower oil added and tastes disgusting)
The fact your brand changed is also suspicious
Even though I am strictly dairy free I still get Mercury Pharma brand levothyroxine …..partly because I don’t want Teva and Vencamil tricky to source unless use specialist pharmacy by post
Thanks Slow Dragon. It's knowing where to start. I will stop dairy for a while and see if any change. The cold weather could also be a trigger. I do believe changing the brand didn't help although feel fine every other way.
When I had a nasty bug recently I was making hot chocolate every night. I still wasn't feeling too good but thought it was still the bug (?covid, but not tested). Then I remembered that chocolate was on my list of intolerances a while ago so I gave up the chocolate and just had the hot milk at night. Felt a whole lot better. Turns out that occasional chocolate is ok, but not regular chocolate for me.
Mentioned it to my daughter who said 'Oh Mum, everyone is sensitive to chocolate'.
It could be - I love my chocolate!!! I have removed the entire thing from my diet for the time being and will monitor these pains. Weren't as bad last night - I do think the cold weather is having a big impact on the pain. Thanks for taking the time to reply to me. Much appreciated.
Can I ask where did you do the stool test through. I got tested for Coeliac a while back when I was getting my reflux investigated. It came back negative. I have gone Gluten Free but maybe I ate something over the weekend that had gluten in it as my wrist was much worse last night than it has ever been. Thank for your reply.
The stool sample was ordered by my nutritionist, I know it was sent off to the USA for analysis and cost me quite a lot.
It came back with lots of foods my gut could not tolerate, and despite me not having gluten for a while (not the best thing to do when testing) it still showed traces of gluten in my body, and flagged up as a no no for me.
It also came back that I was suffering from a leaky gut. We were able to get this rectified with an elimination diet.
When I get home I’ll look up the company.
I ended up seeing a nutritionist when the first GP failed to help me with my thyroid and Hashimotos issues. Told me it was all in my head and depression.
This is when I discovered this forum and started to seek help, then eventually found my voice with my GP and refused to be fobbed off any more, as armed with thyroid information.
Thanks so much. My GP told me on 2 occasions that I was suffering from depression. First time the the pills went down the toilet, second time, I just insisted I be seen by an Endo. I didn't see him but he immediately put me on thyroxine after they referred me to him. I had hashimotos probably for around 10 years.10 years of my life I will never get back. Does no doctor ever get hashimotos I wonder.
The Dr’s that have Hashimoto’s, invariably recognise that many thyroid patients also need T3 added alongside levothyroxine and that TSH is useless for dose adjustment
You said you must google. Dr Peatfield's book is "Your Thyroid and How to Keep it Healthy" and is available from ThyroidUK and elsewhere. Here's the list of book suggestions from Thyroid UK.
I’m no expert but I developed appalling joint pains (wrists and elbows mainly) on levo alone and they woke me at night like you.
I’ve recently been prescribed t3 and the joint pains have almost entirely gone now! I’m still fine tuning my doseage but adding t3 definitely seems to have helped.
Thank you. I will see if I can get an appointment with the GP - tried this morning but no joy. I have been told by people that this isn't urgent and I shouldn't be wasting the GP's time with trivial things like this, then I feel guilty trying to book an appointment.
Don’t feel guilty at all! It’s impacting your quality of life so it isn’t trivial and you’re not wasting anyone’s time.
I used to feel like this too but try to remind myself that we do all pay for the NHS and it’s there to be used- no matter if the health issue is big or small.
Regarding milk alternatives, my current fave is Rude Health oat milk - but the gluten free one. Available in Holland and Barrett and some Morrisons. It’s creamy and not overly sweet.
Yesterday I picked up one called Glebe Farm, haven’t tried it yet but it says it’s enriched and creamy PLUS it’s on offer at £1.50 in Morrison’s at the mo 🤓 And it’s GF.
Regarding your joints, I feel your pain! I struggle with joint pain and stiffness, I’m trying to get to the bottom of it (not yet at full therapeutic dose myself) but it’s certainly worth increasing your levothyroxine as 50mcg is a starting dose for most. I just also wanted to mention two things: carpel tunnel is common with hypos, although that’s a very specific type of pain. The other thing I wanted to say is that I’m exploring the possibility that low cortisol levels are contributing to my joint pain/inflammation. I’m not treating that at the moment because I’m having my serum cortisol tested at my GP on Wednesday. And actually I’ve just thought of another thing: HRT. Oestrogen protects joints and reduces inflammation.
Oh and if you like cheese you’ll need a decent dairy free option and my favourite at the moment is Cathedral City. Pleasingly it seems to improve with age! My daughters couldn’t tell the difference between my aged, fake fromage and their extra mature cheddar the other day 🤌🏼
Oh thanks for that advice. I will check that cheese out. I stopped eating cheese as I wanted to cut back dairy a bit. There is so much to think about. I will cut out the dairy and check things to make sure gluten free and try and get an appointment too I think. Thanks again.
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