I have hashis and I wake up every morning stiff and aching from head to foot and sore joints. I feel like I've been ran over. It usually gradually eases when I get up and move around but reappears alot at night or can sometimes stick around for the whole day. I'm having a bad day today and it's painful even holding my phone and typing.
My levo was recently increased from 50mcg to 75mcg. I'm vit D deficient and taking 3000iu daily for 14 weeks (into the 4th week now) is this something that should be improving or do I just accept this is my life now? I'm only 34 but feel about 84!
Any tips and advice would be appreciated. Would something like yoga help? Or Is there anything I can take? Or it simply just a waiting game to get levels optimal etc
Thanks
Diane x
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Diane17884
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Your dose of levo may not yet be adequate. You should have been started on 50mcg of levothyroxine with 25mcg increase after every blood test which should be every six weeks until free of symptoms.
You need a Free T4 and Free T3 blood test because if either is too low you aren't on a sufficient dose of levo. The GP wont do these tests (or rarely). We have two labs who will do them and I will give you a link for information:
All blood tests have to be at the earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.
GP should also test B12, Vit D, iron, ferritin and folate at your next blood test. Tick off the symptoms you have and also ask for thyroid antibodies to be checked if you haven't had them tested.
Medichecks and Blue Horizon are the labs. Blood draw should be at the earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.
Thank you for that information. All my blood tests and vitamins results are on my profile. I'm lucky in that my doctor is testing every 4-6 weeks and has been happy to increase accordingly. I was only diagnosed in May. I haven't ever had T3 tested but I'm waiting to see how I get on with just taking levo until I get TSH and T4 levels as good as they can get . Then I will definitely request or test privately based on my symptoms. I was quite low in vitamin b12 so supplementing 500iu sublingual daily and still to introduce b complex.
Hello D. I have similar symptoms, just as you explain. I think mine may be too low T4 and am waiting for an increase to possibly take effect. Having said this no type or amount of meds have relieved these symptoms entirely. Mine is definitely not low vit D but yours could be. This is not much help but just wanted to say I'm experiencing almost a blue print of your symptoms.
Do you mind me asking what medication you take and what ur levels are at the moment? I Just want to compare really. My TSH has really came down a lot but my T4 has remained the same the last two blood tests and also think it's low at 12 (9-21)
It's awful waking up every morning feeling so unwell and in pain isn't it :(. I'm just at the start of my journey really so maybe I just need to be more patient which I'll admit isn't a virtue of mine lol
Yes well D, My FT4 is less than 1 and I have upped my dose from 25mgs to 50mgs. I also take T3 meds and my T3 is almost at the top of the range. Last bloods my TSH had begun rising and was about 1.76. You used exactly the same wording I use to my husband when I describe the pain/stiffness. Sometimes it is searing and burning. I do hope yours clears up when your med profile looks a little better. Do take note of the excellent advice given to you by shaws.
Gosh that is low isn't it 😳 thank you very much B, I hope yours does too. It's a minefield all this isn't it. Hopefully we get there in the end. It's something you'd take for granted before, just waking up refreshed and feeling no pain. At least we will appreciate it a whole lot more lol
Diane please feel free to private message me when, and I know you will feel better in the fullness of time, your treatment and condition is stabilised. You are probably at the most difficult stage of this disease so hang on in there! B x.
Thank you very much for taking the time to reply and providing those links. I do have K2 and magnesium alongside vit D to take but been trying to introduce supplements gradually and with my recent increase in levo wanted to wait a week or two incase of any adverse reactions. I wouldn't know if it was the Increase or the supplements. I will introduce the magnesium ASAP x
" We suggest that all adults who are vitamin D deficient be treated with 50,000 IU of vitamin D2 or vitamin D3 once a week for 8 wk or its equivalent of 6000 IU of vitamin D2 or vitamin D3 daily to achieve a blood level of 25(OH)D above 30 ng/ml, followed by maintenance therapy of 1500–2000 IU/d (2|⊕⊕⊕⊕)."
So essentially you could double your current dose by taking two sprays. Note the units above are ng/ml. The equivalent is 75 nmol/L but ideally aiming for 150 nmol/L before switching to maintenance.
I'd up your dose here also to at least 1000mcg if not more. You could still very very symptomatic from that level. Anything under 500. Aches. Pains. Brain fog. Numbness in extremities. Tingling etc. In order for your body to use that b12 though, iron and folate need to be in good order too. Iron middle of the range and folate near the top. Yours are both low. Are you planning g on addressing those? Have they tested/investigated Pernicious Anemia for you? Your deficiencies are a classic representation of Pernicious Anaemia (or other absorption issue like atrophic gastritis ) as well as hypothyroidism.
Thank you for your brilliant reply. I may up my dose to two sprays of vitamin D then and retest once I've done the 300,000 loading dose and see where I am. With regards to b12 I've recently upped it to 500mcg sublingual and will raise again to 1000mcg. Im also going to take a vitamin b complex alongside to help with ferritin. I have Spatone for iron. But I don't want to take too many all at once so im gradually introducing supplements every two weeks. I've always been anxious taking medications 🙈
My doctor wasn't concerned about any of my vitamin tests even tho a few are just 'within range' she was very unlikely to do further testing which is why I started supplementing. Which I know unfortunately can skew the results. I did have really bad gut issues which seem to have resolved with gluten, dairy, soya and egg free diet. So I'm hopeful that's the reason. I do suffer with many b12 defiency symptoms but again that could be down to hashis 🤷♀️
It's all a bit chicken and egg isn't it.?Each deficiency exacerbating the other. In a similar position myself (same deficiencies and symptoms as you) trying to untangle the threads so to speak. Totally hear what you're saying re introducing things gradually. But rather "areas" than individual supplements one at a time, because each will need Co factors as follows:
• vit d with D3, k2 and magnesium
• iron with vit C
• b12 with folate and iron
For me....Iron is my nemesis and the one that needs most urgent help. (Serum b12 and vit d are not too bad now) Because without it the b12 doesn't get processed properly and the Levo won't be effective. Last count iron was 4, ferritin 9, and hb 11.7
I strongly feel low stomach acid is a big part of it.
Yeah I think you are right. I do need to focus more on areas 🤔 I Just took my first magnesium, so that's D and mag sorted. I will introduce k2 soon. The added bonus is magnesium may help with muscle aches and pains lol. Then will move onto the b vits and iron. The spatone has vit C in so it's quite handy
You explained that perfectly, it's definitely like trying to untangle the threads. It's all very complicated but I'm so glad I have this forum for the amazing advice I've recieved. Feeling that I'm being proactive and doing things to help myself gives me hope x
Magnesium spray is really good in spray form sprayed directly onto arms and legs (and sore muscles!). Absorbed through the skin. Also Epsom salts soaking in the bath is a good way to get magnesium into you.
Hate to say...spatone (although the only thing I could tolerate) isn't strong enough to increase levels. Iit only delivers around 2mg of elemental iron per sachet. Whereas you need about 65mg of elemental iron 1-3 times a day to boost levels. I was shocked when I found that out as spatone ain't cheap! I've been looking at Vitron C:
I should add...the k2 is REALLY important with high dose vit D. It stops the extra calcium building up in your blood and puts it in your bones. You do not want excess calcium in your blood.
Yes I realised after buying it that I need a lot more iron than what spatone provides lol. I've got 48 sachets though so I'll use them up first. Ive saved the link you sent for future 😊 I'll also wait to increase vit D until I'm ready to take the k2 so I can start taking it with the higher dose. I'm currently on a soya free diet (through choice as part of my gut healing process) and I've got mk7. It is still safe to take as it's made from fermented natto? And I know we're also told to avoid soya.
Yes, every day for 20 years and that's exactly how I always describe it to GP (not that she ever takes any notice) I've now completely forgotten what it's like to wake up and feel well.😔
Things are greatly improving for me though, since finding this forum and taking all the advice from kind, knowledgeable members.
I'm managing to get well by doing the exact opposite to what my GP has always advised😳
It's early days for you, but you've found this forum and you're following the advice so you will soon be feeling better👍. GPs, and even Endos have little idea about thyroid and related problems. Strange, but true.
I would say don't ignore your B12 deficiency symptoms ~ I was repeatedly told by GP I didn't have a problem, and I really did! Only from advice from here did I get to the bottom of it.
If you have Vit D deficiency, you may have others ~ GPs are more than useless with all of it. I let my deficiencies get serious by believing they were 'ok' ~ go by how you FEEL and learn all you can from here.
Once thyroid meds are adequate and supplementing corrects your deficiencies, you will feel much better, so keep that thought in mind.
Try to avoid stress (easier said, I know) and to not get too anxious about feeling so ill, although of course thyroid being out does this to you anyway.
I think a bit of gentle yoga and mindfulness, walking in green spaces, etc., can all help, but as long as you feel physically up to it ~ don't overdo things. My little garden does it for me. 🌻🐝 xx
Thank you so much for your kind reply 😊 Gosh I've felt like this for over a year now can't imagine going at it for 20! So glad to hear your starting to feel better though with the advice from here. This site is brilliant. Everyone is so kind and patient and happy to help. I've learnt more here than anywhere else and it's so great to be amongst people struggling with the same issues who understand. Somehow makes me feel less alone is all this. Granted I have good family and friend support but I don't think anyone really knows until they have it.
Ive been trying so hard with my stress levels. Not fretting over the small things anymore. And feel a lot more able to cope. Before diagnosis I was so unwell with anxiety and worrying it was a relief to have something wrong and that I wasn't just going mad lol
It has been quite a journey so far that's for sure!
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