New symptoms of burning pain & calf pain / pins & needles & numb toes after increase in levo !

[Toto88]

Hi everyone - I’ve been on this forum a few times with chronic head burning neuralgia, neck stiffness, jaw pain & ear tinnitus/ hypersensitivity. Recently I went to see a private endo & over the last 10 days increased my levo by 25mcg - I’m going to try the liquid form soon because I maybe allergic to what’s in the 25mcg & it’s fillers ! For three days now since the increase I have had increasing burning in my knees & calves, with pins & needles & numbness in my toes ! Hip pain also ! Has anyone else experienced this when firstly upping their levo & should I stick with this & see if it disappears or should I let the endo know ? Thanks everyone xx

[BadHare]

How’s your B12?

I’ve never taken T4 but did have these symptoms when my B12 was low.

[SlowDragon Administrator]

Agree can be low B vitamins and/or low vitamin D

Are you supplementing daily vitamin B complex ? Ideally one with folate in, not folic acid

Likely temporary.....as you have been left on far too low a dose of levothyroxine for far too long

[Toto88 in reply to SlowDragon]

So would you say increasing levo T4 before adding T3 is the way to go ? Just the private endo wants my T4 levels up before deciding on adding T3? Just I have read posts which say that regardless of how much Levo you up if you are not converting then this will only make you worse ! He has told me my T3 is low & will start this if need be but wants my T4 better before ? I’ve been taking B12, Vitamin D & Iron tablets every other day because I’m borderline anaemic aswell but not the folate you have mentioned ! I’m honestly feeling worse with the levo upped by 25 mcg & it’s only been 10 days or so !

[mandyjane in reply to Toto88]

You would probably be better with B12 patches or a spray for your mouth. Tablets wont be digested as needed. This does sounds very B12 to me and not much point increasing anything or adding T3 as your bodys will not be able to use the hormones if vits are low. You need you Vit D, folate, B12 and ferretin tested. Ignore a normal or in range result for B12 as it is not a reliable test.

[SlowDragon Administrator in reply to Toto88]

Yes....generally we need to get levothyroxine dose up high enough to get Ft4 in top third of range before can asses if you need to add T3

Adding T3 is not easy, frequently needs taking as 2-3 small doses per day and, due to utterly outrageous price charged to NHS, extremely difficult to get prescribed

So first step is to get levothyroxine dose high enough.

Typically that’s likely to need to be increased slowly until on somewhere around 1.6mcg levothyroxine per kilo of your weight.

All four vitamins need to be optimal.

If you have autoimmune thyroid disease, frequently we need to be on strictly gluten free diet too

If, after all these steps Ft3 remains low....then look at adding small dose of T3 alongside levothyroxine

Vitamins

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

In YouTube video...vitamin D at 40ng/ml (USA units) is equal to 100nmol (UK units)

youtu.be/74F22bjBmqE(Not working as expected?)

[FancyPants54]

I have this problem too. Burning feet in bed, with tingling toes and balls of feet. At it's worst the stinging felt like I had walked through a field of stinging nettles and spread up to my shins.

I have no idea what's causing it. I tried to increase my Levo and it got worse. I have just tested my essential minerals and vitamins and all are OK. Active B12 is good and D is good. Ferritin is still a work in progress but it's higher now than it's been for a long time.

When I walk my toes feel numb and if feels like my socks have bunched up under my feet when they haven't. I can't find much about this at all. Everyone immediately says "B12" but I know that is not the case. Despite good levels I'm still using my Better You spray anyway.

It's been a bit better lately. But towards the end of the week I sagged again in various ways. Felt more sluggish and more tired and less able to be bothered with things and it's worse again.

I have had a DIO2 gene test done, but that was weeks ago and still no result. I know I don't convert well. I'm wondering if the tingling is due to low T3.

[Toto88 in reply to FancyPants54]

Well yes - I have def seen a correlation between the increase in levo ! When I was on 50mcg I had it awhile but then when I increased it to 75mcg & 50mcg alternative days the burning pain in the knees, shins & feet went away. However, because i was told by my endo to increase 75mcg daily the issue again has started ! I would stay on the 75 mcg & 50 mcg alternative days if I didn’t have the burning head, neck, jaw neuralgia but I’m trying to get that sorted & that’s why I went to him in the first place ! He’s going to try me on liquid form - hopefully next week - I’ve been taking the levo in tablet form & it may well be the fillers or like I say T3 needs to gradually brought in x I had this knee, feet issue some 5 years ago for many years & im v sure the increase in levo made it worse then !

[Toto88 in reply to FancyPants54]

May I ask what dose of levo you are on plz ? I’m on 75 mcg now - so everyday that means 25mcg of the MercuryPharma brand is being added to the 50mcg Almus brand ! I think it’s the 25mcg extra each day that’s causing it ! I’ve looked back on my medical notes & in 2017 I was put on 75mcg daily - it says that I called my Gp to say I was reverting back to 50mcg because I complained of headache & muscle / burning aches in knees & feet. So at that time I went back to 50mcg & those problems went away ! When I however started to get the burning head neuralgia/stiff neck - ear tinnitus that was July 2019 & I was still on 50 mcg ! I did not however have burning knees/feet etc though ! I’m a v complicated case but I’m praying the liquid form which has no fillers sorts me out x it would just be v interesting to know how much you increased it by that worsened your symptoms & what brands & amounts you were taking then as apposed to now x Thanks v much for your help

[FancyPants54 in reply to Toto88]

Hi

This tingling/numbness is relatively new for me. It started sometime last half of last year. It began gradually so I'm not sure when exactly.

I've been on Levo for at least 2 years now and always the same brands after a brief and hideous experience with Teva (I sent in a yellow card for that and won't touch it again). I'm on 125mcg. 25 - Wockhart and 100 - Almus. I attempted to increase on the advice of an endo. He wanted 150 for 4 days and then 3 days back at 125. I didn't feel good at all and as I said my tingling/burning/numbness got worse. My T3 is consistently low regardless of my T4, which I have had over the top of the reference range in the past to no avail.

It seems to be something that has accumulated over time. I also have a really itchy forearm, and if I scratch it it comes up in painful lumps and bumps the are white and red and the tops come off if scratched and then take ages to heal. This has been going on for a few months now. GP said it was dermatitis and gave me a steroid cream that made things worse. But I've not been able to go back because of the current situation. I do think these things might be connected. I have to take an antihistamine every day to stop me tearing the skin off my arm and douse it in coconut oil every night.

[Toto88 in reply to FancyPants54]

I’ve actually got 13 tablets of wockhardt 25mg - so tmrw I might take that instead of the mercurypharma & see if it makes a difference! Do your knees burn aswell as your calves ? & do your feet go ice cold especially the big toe during the day ? I’m willing to try anything to get on top of these symptoms! I’m not sure what company wockhardt is owned by - I will have a look but I too stopped Teva because of problems ! I wish Almus would make a 75 mcg or 25mcg - I’ve been on that since my early thirties & I don’t think that’s the culprit! Have you thought of liquid form ? & maybe trying T3 ? This is my next move but you will have to see a private endo to have this prescribed. GPS are hopeless with regards to thyroid - they said I was within normal range & I knew I wasn’t ! This was clarified recently by the private Endo ! X

[FancyPants54 in reply to Toto88]

My knees aren't affected and my shins were only affected when at its worst. I started taking magnesium and zinc daily at that point and the burning and stinging returned mainly to my toes. I don't get cold toes.

I started on 25 Wockhart and never had an issue with it. I was OK on Mercury Pharma too, but decided to stick with Almus.

I doubt it's fillers of these meds to be honest. I've been on the meds without these issues for over a year. I do now have to take a beta blocker and anticoagulant for atrial fibrillation and I do wonder if it's more likely to be a reaction to one of them.

I have tried T3 in the past. I bought my own. I've tried NDT too. I was best on Armour a few years back but can't remember why I stopped it. Things went wrong I guess. I tried T3 only for quite some time but felt terrible and got scared of the high dose so I reduced and reduced that until I came off it. Then I ended up on Levo. I do see a private endo now. We are checking various things to do with conversion and if my gene test comes back showing an issue then I will have to consider adding T3 to the Levo under his guidance. This all gets way harder because I have atrial fibrillation and currently, sat here peacefully at my desk for ages, not stressing about anything, my heart rate is 93-97 beats a minute and thats with a beta blocker. I do wonder if it's because I'm still too hypo but it's scary to try T3 with a HR like that. Cardiologists freak out if you mention T3.

[Toto88 in reply to FancyPants54]

I believe you can change from hyper to hypo - if not medicated properly & now I’m going through the menopause that messes everything else up even more I believe! You see I would associate having a heart rate that quick as being hyper - when hypo it’s slow ! Beta blockers too interfere with levo ! Why not try liquid form in the levo which I’m hopefully going to start this week ! Ask your private endo - worth a try x

[FancyPants54 in reply to Toto88]

I am most definitely nothing like hypo. I do my full bloods regularly and I’ve never been close to having a decent level of T3 in my blood whilst on Levo, let alone too much of it.

[Toto88 in reply to FancyPants54]

So are you diagnosed with hypothyroidism or hyper ?

[FancyPants54 in reply to Toto88]

Hypo. You can't be hyper with low T3. I am hypo with fast heart rate and atrial fibrillation tendency. I have had a cardioversion earlier this year after 11 months stuck in AF, but with all that's going on I've not been able to go back to find out if it's still it normal sinus rhythm or if it's gone back to AF. It certainly jumps around a lot. And I'd like to know why it's so fast, because it wasn't fast before the 11 months of AF. I was taking half a tablet of T3 a day when the AF started so all the doctors freaked out. However, stopping it didn't change things and the bloods I had done whilst on the half tablet showed my T3 had dropped a little from before anyway.

I think the fast pulse is because I'm so low on T3 but relatively high on T4.

[Toto88 in reply to FancyPants54]

It is strange though - the small amount of levo 25mcg causing these problems though don’t u agree ? I might ask one of the admin on here about workhardt & mercurypharma & see if there have been similar experiences ! I was reading about anhydrous being in some of the brands aswell as mannitol ! The Teva I reported too ! X

[Batty1 in reply to FancyPants54]

I agree I have simular issues with numb big toes and hands that randomly come and go and increase in muscle weakness. It's just annoying to constantly deal with this thyroid garbage makes me want to scream!

[Toto88 in reply to Batty1]

Are you able to let me know what brands of Levo you take aswell then plz & amounts ? Together we maybe able to figure out if indeed it’s the fillers were allergic too !

[Batty1 in reply to Toto88]

I currently take (2) 50mcg Synthroid and 10mcg Cytomel since the Synthyroid 50mcg (white) has the least amount of fillers and I still have issues. I also developed psoriatic arthritis after my thyroidectomy, but doctors say my PSA has nothing to do with losing my thyroid.... certainly seems one created the other.

[Toto88 in reply to Batty1]

Why not try liquid form - worth a try maybe x

[Batty1 in reply to Toto88]

It's never been offered to me but it might be worth checking out since I do have stomach issues.

[Toto88 in reply to Batty1]

Well I’m hoping to start this week if the endo gets the letter emailed to my Gp ! I’ve decided to go back to my usual dose until then - see if the leg issues disappear! Can’t put up with even more pain x

[Toto88]

Is that caused by being undermedicated do you know plz ?

[Toto88]

Ok - well it could def be undertreated hypo - I don’t have diabetes & I understand lupus is usually from a tic bite ? Wouldn’t know about Sjorgrens! I’ve started retaking my b12 & iron again & vitamin D to see if that helps ! I was taking magnesium aswell but have stopped it ! I got a bit paranoid to be honest because in a lot of vitamins there is something called magnesium stearate which in large amounts can cause daily headaches - this is why I stopped them to see if my head pain stopped ! Titanium Dioxide is also another filler in these vitamins !

[Toto88]

I was just reading your profile there - hope you dont mind x you really have been through the wars & I commend you on how you haven’t given up ! I thought having a breakdown was hard but this bloody disease is so neglected by the NHS - half the endocrinologists have no idea what they are doing & wrkg within such strict guidelines which I believe are only driven by NHS lack of funding ! I did look at lupus but it says about rashes etc which I’ve never had ? I do really believe that the crap we put in our bodies these days - meds’ included have a knock on effect years to come ! I’m in so much pain but i will not take gabapentin or any of the other shit the GPs give out - I would rather die without another pill in my body than to keep taking them. I believe fibromyalgia is caused by again people not being medicated properly with T3 or T4 - they make too much money by dishing out pain meds ! & if we were all educated as children to eat iodine - rice - fish - vegetables - fruit - water - no sugar then half of us wouldn’t even be on this site ! Arthritis is caused by inflammation - fibromyalgia symptoms are caused by inflammation & mostly all other diseases are caused by it ! I do hope you recover - I think it’s so sad though that thousands of us are on this site because no bloody NHS Endos are fighting our corner & it’s appalling ! Sorry for my rant but your story is yet another example of how shameful the whole system is x I wish you the v best & thank you for trying to help me find an end to my pain x means a lot !!