I've had Hashimoto's since I was 14 (am now 47). I'm on 150mcg levo. Levels are all good - high in range for T4 and T3, vitamin levels all good (D near 100 where I feel good). Gluten free diet. But still I have aching joints and muscle pains all of the time. There is a not a day when I am pain free. My knees are particularly bad at the moment. I'm not overweight.
I've read a few things lately that say aching joints comes with Hashimoto's. Am I doomed to feel like this forever? Asking now because I was out last night with some friends and they were talking about someone who has hurt his knee and his awful it is that he is in daily pain. I thought "welcome to my world".
I haven't been to my GP about this yet. I suspect only painkillers would be suggested. I've also had pain in my cocxxy for nearly 4 years that started randomly. Xrays etc show no arthritis.
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RhubarbGiraffe
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The joints thing is normally just not enough thyroid meds. You can take a little more Levo. 10-20% I know you say your blood tests are good but (I will get objections here) you need to drive thyroid medication on symptoms not a 3-6 monthly blood test. If it is what I suspect you will improve in about a week if not it's something else.
I assume book an emergency appointment. I wonder if its just because of Christmas, or perhaps they are all booked up until x date and they'll reopen them again soon.
The objection is, james, that most patients cannot just adjust their medication at will. Their dose is strictly controlled by their doctors who do not like increasing doses and only do so very reluctantly based on the TSH. It's really not as easy as you make it sound.
I cant believe people dont have 3-4 pills extra Levo 50mcg laying around. I have boxes of thyroxin 50's and 75's, a bottle of 100 thyroid gold, 300 x 60mg NDTs laying round in the fridge. You just buy it online when you want to experiment. Anyway what ever - I gave up on Endos' and GP's years ago
I cant believe people dont have 3-4 pills extra Levo 50mcg laying around.
But you are not in the UK where most people are only prescribed the exact amount of tablets for 4 weeks at a time, which is how most GPs tend to prescribe even for chronic illness requiring lifelong medication. In those circumstances, there is no way someone can have extra tablets lying around.
RhubarbGiraffe Can you post your latest results, with their reference ranges, so we can see whether you are optimally medicated.
I certainly don't have any extra lying around. My GP practice is very strict and will not allow us to order more than 7 days before the last prescription expires. Given that it takes them 3 days to process the request and another 3 for the pharmacy, there is no wriggle room.
Well, my dear, you'd better believe it, because that's the way it is. In fact, where I live in France, it can be even worse. I had one endo that would make the next appointment in two calendar months, but give a prescription for 8 boxes of levo for those two months. But, the boxes only contained 28 tablets each, meaning that I never had quite enough to last. When I mentioned it to her, she just looked blank. She had no idea what I was talking about. Please don't just assume that other countries are just Australia with a different language. There are so many vital differences.
Hahaha - my GP hands out scripts for 12 months. Any body would think NHS was handing out cocaine or heroin . Don't know about others but my hypothyroid anxiety would never let my Levo/NDT medication reserves get down to a few days worth. What happens if you get riots and looting with the Bexit thing, and you cant get to a chemist for a few month ? I was even thinking (when I was struggling with Levo and NDT) that I might make better friends with my local butcher and get fresh lamb thryoids and chop the up into small bits ??
I think - and I've often thought - that it would probably be easier to get hold of cocaine or heroin! Not that I've ever tried. But, these doctors like to keep strict control of everything. For one thing, they think all patients are idiots and not capable of controlling their own medication. And, for another, their fragile egos feel threatened by patients learning about their disease and understanding what they need to make them well. They just cannot let go the reins.
And, they have little interest in what happens to their patients should their supply be interrupted. They don't even live on the same planet as us! They are up their in their ivory towers, looking down on the rabble, with no understanding of real life. I once had an operation on my back, after which, the surgeon said to me: "in future, you will have to make the bed and clean the bath on your knees so that you don't bend too much - well, that's the theory, how it would work out in practice, I don't know, because I've never done either." Can you imagine someone being so out of touch?!? Maybe you have a new breed of doctor in Australia. If so, please clone some and send them over to us!
Coccyx pain is a hypo symptom. So, it sounds as if you are under-medicated. Who said your levels are good? Your doctor? Do you always get a print-out of your results? If so, post them here and let's have a look. You can't always trust a doctors opinion of 'good'.
I get the GP to tell me results verbally, but I also do private testing once a year. Here's the last Thriva results. No T3 because of the stupid way they have things set up - meant to get that, but couldn't work out how to order it. Have complained, got a small credit to my account and will make sure I order it next time. But last one was in upper 2/3, so I am a good converter.
TSH 0.383 (0.27-1)
FT4 18.7 (17-22)
B12 83 (37.5-188)
Ferritin 65.5 (44-150)
Folate 18.5 (8.83-40)
Vit D 75.4 (75-100)
Looking at these now, I feel perhaps it's the Vit D levels. Mind you. FT4 is quite low too.
I am now taking BetterYou sprays for B12, Iron and Vit D (3,000UI). I feel better when my Vit D levels are around 100, so I'm hoping that will help relatively soon. These results were October 25th. Vitamins taken 4 hours after levo.
Blood tests always done first thing after fasting and 24 hours after meds and vits.
Pain is all muscular, rather than grinding bone type pain. I think inflammatory in nature.
I'm vegetarian, so please don't tell me to eat liver
last one was in upper 2/3, so I am a good converter.
Without giving me the range, that is absolutely meaningless.
Are you sure you got the range right for the FT4? I've never seen a range like that. But, if it's correct, then your FT4 is far too low.
Your nutrients are all on the low-side. I would want mine much higher than that. And, your vit d is low enough to be causing problems. Your zinc is probably low, too, and that can cause muscle pains.
All in all, whoever said your results were all good is living in cloud-cuckoo-land.
Range definitely right, 17-22 "normal", 12-17 "low".
Looking back on my results a year ago, my FT3 was 5.18 (3.1-6.8) and my FT4 was 22 (17-23).
It was me who said they were good. Perhaps it is also I who is living in the land of the cuckoos due to suboptimal results! They didn't seem bad when I got them in October, but now I can see they're not great.
Range definitely right, 17-22 "normal", 12-17 "low".
Oh, I see! Well, that's rubbish for a start. 'Normal' is different for everyone. And it's not automatically 'normal' for you just because they say it is. The range is 12 - 22, which is the more usual range. 17 is just mid-range, which is far too low for most hypos.
FT3 was 5.18 (3.1-6.8)
And, that's only just over mid-range. But at that point, your FT4 was 22 (same range), so conversion isn't brilliant. Could be worse, now, due to declining nutrient levels. But, they both need to be tested at the same time, and compared. You can't take an FT3 from some time ago and compare it with a recent FT4. It doesn't work like that.
Understanding results is not exactly an art, but it does take some practice. And, GPs never really get the hang of it. So, don't beat yourself up about it.
Hi Greygoose- your comment about Coccyx pain is very, very interesting. Been suffering from terrific pain there for about 2-3 years, so much so, cannot sit down some days. Doctors putting it down to age ( 63!), also suffer from Plantar fasciitis and knee issues. They won't investigate further just want to give painkillers etc....Wasn't aware that Coccyx pain was related to Thyroid issues but then again should have guessed as so much musculoskeletal issues are linked to faulty Thyroid-DUH!
Am hypo with Hashi's and have faulty DIo2 gene. Just sent off for full blood panel with Medichecks and have been supplementing VitD and B12 after picking up on tips and excellent advice on this forum. Where would we be without it!
Going to try and get private endo to prescribe T3 as local CCG and endo's are a dead loss. Hopefully, once I have optimum treatment other ancillary issues may improve. Fingers crossed...
But it was something I searched for especially because I had a friend who had coccyx pain and I was convinced she was hypo. Doctors 'diagnosed' her with fibro!
Optimal nutrients would be a good first step. But, before you even think about T3, you should get more up-to-date testing done of FT4 and FT3 to see if it would be of any use to you.
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