Burning toes/foot?leg?: Hi there, I've been... - Thyroid UK

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Burning toes/foot?leg?

Blossom234 profile image
17 Replies

Hi there, I've been taking my 50mcg of T4 since Saturday last week (15/06/2013) from 25mcg as directed by my doctor. I got up this morning, a bit earlier than usual and both of the backs of my calves started to feel very heavy. I could move them fine, but they just felt as if they were filled with lead. I thought the heavy feeling would settle once I had a shower (I always feel a lot better during and after a shower) and went out for an hour or so. I planned to go out into town anyway as I had things to sort out. I was dressed quite cool as it was a pretty close day today and there were no problems.

It wasn't until I came back after being out much later (half of the second walk was uphill) that I noticed something else happen.

I came back from being outside (the way back was downhill) and I felt my left calf cramp, come over heavy and look a little puffy. Right leg was fine throughout all of this. This carried on for about half an hour even when I was sitting down.

Although the cramping, heaviness and puffiness went away the toes on my left foot felt as though they were burning. They don't feel hot to the touch, which is a bit weird. It isn't as though I'm completely inactive, I walk downhill and uphill every other day to go the shops with my boyfriend. Is the T4 still taking its time to work or am I still not taking enough? I only ask this as the lower lids on my eyes used to get very puffy and they've now gone down, so I can only assume the T4 can only sort one thing out at a time, but I really don't know.

Can anyone help me out with this?

Thanks :) xx

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17 Replies
greygoose profile image
greygoose

Actually, the T4 itself doesn't sort anything out. It's a storage hormone and has to be converted into T3 to be of any use to the body. That's why it takes several weeks to kick in. But I doubt if your final dose will be 50 mcg, that's just a tiny starter dose. Hopefully your doctor will increase it again in a few weeks.

Hugs, Grey

Blossom234 profile image
Blossom234 in reply togreygoose

Hi Grey thanks for your response.

I didn't know T4 was a storage hormone!! :o

xx

marram profile image
marram

Hello, Blossom234.

The cramping and burning sensation is common amongst hypothyroid sufferers. It is possible that you are suffering multiple deficiencies if you have only just been diagnosed, and as you start traetment you might find that these become evident more and more. What is happening is that your body is being 'fired up' like a car which has been standing for a while, and all the components are a bit seized because there is none of the oil circulating!

It is possible that as your thyroxine is increased, as it should be, it may start to settle, which is good news. If it does not start to settle, you may need to consider having blood tests to determine if you need some kind of supplements to aid your body to recover. There is some very useful information here:

thyroiduk.org.uk/tuk/treatm...

As you read you will notice that some of these elements are essential for conversion ot T4 (that is your Levothyroxine you are taking) to T3 (which is what your body uses as a kind of lubricating oil to make it run smoothly). If you are deficient in any of the essentials you could find it difficult to recover.

Marie XX

Blossom234 profile image
Blossom234 in reply tomarram

Hi there Marie thanks for your answer and the link!!

I like the car imagery! I think I am low on vitamins as I have not been tested for things like calcium, vit D or magnesium. I have eaten healthier over the past few weeks but I'm still probably not getting enough from what I've consumed. I take in a lot of dairy (I drink tea 3 times a day, latte maybe twice a week, milkshake every other day). I don't think that's too detrimental...

The only thing I have been tested for in the past was Iron/ferritin, albeit over a year ago and that was to check for anaemia. That came back as borderline (29ug with normal as between 30-400ug), but anything else I would not have a clue.

Would a GP do a complete blood test to check for vitamin levels? I had a complete blood test previously and there's no mention of vitamin D or calcium or any of the others going by the copy of the results, which makes the term "complete" a bit...I don't know...misleading?

Thanks!! xx

Yana profile image
Yana

I felt exactly the same when I went on Levothyroxine, even within the very first days. My legs felt like they were on fire, and I was tempted to stop the medication thinking something was seriously wrong. I spoke to my sister who works in a doctors surgery, she said don't stop you medication because sometimes you can feel worse before you get better.

This was true as the burning sensation did go away after a few days. Take on board the information on the link above about essential vitamins and minerals, they work for me. Taking magnesium made me feel like I had a new pair of legs as I am a regular at the gym and this mineral can easily be depleted through sweating, coffee, alcohol and even through the lungs.

I chose to take the supplements when my doctor said I was near optimal with my levels, as I didn't want anything to interfere with my medication. It's your decision only you can decide whether to take supplements or not, I know not everyone likes to.

Blossom234 profile image
Blossom234 in reply toYana

Hi Yana thanks for your answer!!

I've not taken supplements before - apart from chewable vitamin C tablets when I was a kid!! I always assumed if I eat enough fruit and veg that was enough but since upping my dietary intake of healthier foods (I had a really poor appetite before) taking vits is worth thinking about, especially now that my nan takes evening primrose (she has arthritis) and says that it's helped a lot.

Thanks!! xx

Yana profile image
Yana in reply toBlossom234

I've always had a poor appetite and put it down to the fact that exercise can suppress the appetite, although other people would say different. My appetite has come back with a vengeance since my increase from 75 to 100 mcgs. I've lost 2 1b already, within 2 weeks.

I've taken this as a positive thing and can only think I'm converting t4 to t3 and in the past this has not been happening, because I use to get tired before getting hungry.

It's early days yet and as we know things can change from day to day, so I'm not getting to excited yet!

Blossom234 profile image
Blossom234 in reply toYana

Hi Yana

Yes, by all means take an increase in appetite as a good thing! I certainly did as I was a very unhealthy weight before. Not that I looked like a skeleton but my clothes were hanging off me and I used to be a 6. I weighed something like 7.4 stone. This was back in Dec 2012/Jan 2013 and before the hypo was even found.

Now I weigh 7.12 stone and about a size 8. I'm eating food that contains more fat but I'm not excluding fruit/veg altogether.

Funny that you should mention about getting tired before getting hungry. On one occasion my boyfriend and I were out shopping and I came over very weak. We stopped in a cafe where I had a latte and a slice of cake. Not very healthy I know *smacks hand* but it did help me to feel better. I'm not diabetic but I'm guessing what I had was hypoglycaemia? We went back out in the cold and that was when I started to get tired again! At least now things are better and I know what triggers attacks.

And yes, things do change from day to day - today I feel ok but there have been times when my mood's been incredibly changeable!

Best wishes x

Jackie profile image
Jackie

Hi Burning can be any hormonal issue but do make sure your Glucose is in range, very associated with Diabetes, hormonal and autoimmune.Thyroid TSH, T4 and free T3,

Best wishes,

Jackie

Blossom234 profile image
Blossom234 in reply toJackie

Hi Jackie

For my last blood test I was checked for blood glucose and that came back as 4.6mmol/l. I do have a family history of diabetes but touch wood I have not yet developed it. Thyroid blood tests are not yet due to be done until 23 August but I'm not sure if I should book that much sooner. Only other thing I could do is go back to the GP.

Thanks!! x

Jackie profile image
Jackie in reply toBlossom234

Hi If GP is like mine, you have to ask for extra tests. When I had my diabetes start, I had to diagnose it myself, very se3vere then, I used to have annually tests but in just a few months went so bad. I kept asking about my feet, no one, even my Rheumatologist knew of the connection, should have asked my Endo. After I found out what it is I read it is a common sympton, also other odd problems in the feet, and horrible nerve pains called peripheral neuropathy, causes me real problems. So depends on when you had the last Glucose test, also the Hb1Ac is better. If you suddenly get very thirsty or getting up in the night, classic, I am under weight so that is not always relevant. GP, `s are normally fine about Diabetes tests, even they know how common it is!Yes, I would also ask if you can have TSH, T4 and Free T3 if possible, some will do the FT3 with the tests, if you pay about £10 for it.

Best wishes,

Jackie

pilot44 profile image
pilot44

Hi Blossom234

Yes have had the same - used to play 3 games of golf a week but once started on Levo could only manage 1 game.

Eventually went to see a Reflexology Consultant and found that my Manganese, Calcium & Vit D were very very low. Now on 5000I/U daily for Vit D (the Vit D supplements bought in a supermarket are only 250I/U so you need proper high strength ones) plus Manganese & Calcium. Just back from a week walking in Italy and I'm fine. You do need to get your Vit levels checked. Hope this helps.

Good Luck

M

Blossom234 profile image
Blossom234 in reply topilot44

Hi Pilot44 thanks for your answer.

When I go to the GP to get my vit levels checked do I ask them simply for my vit levels to be checked? This may sound like a silly question but I only ask that as when I went for my blood test that diagnosed the hypo, they did a "complete blood test". Does a complete blood test not include vit levels? It seems odd that it wouldn't if they're meant to be "complete"!! I've never ever been checked for vit levels either apart from my iron on one occasion which is going back a year and that came back as "borderline anaemia".

Also is it safe to take supplements like this on top of the thyroxine? I know that there are certain things I can't take as well as the thyroxine but I don't know if this includes supplements like calcium, etc.

Thanks!! :)

xx

Yana profile image
Yana in reply toBlossom234

Thought you might be interested in this link below.

stopthethyroidmadness.com/f...

Blossom234 profile image
Blossom234 in reply toYana

Thanks Yana x

pilot44 profile image
pilot44

Hi Blossom234

Not sure - the GP's ask for specific things and the lab only tests what is asked to test.

I went to a reflexology practitioner privately as they test everything on a machine in front of you and you can see exactly when any particular item is not right. Without the right vitamins the Levo (T4 - raw material) will not be converted to T3 (that is the material the body actually uses) She described it as - you see loads of supermarket trucks driving round the town but when you do into the store the shelves are empty. Your body may well have enough T4 (Levo) in the blood stream but is not converting it to T3 so the body can actually use it.

So I understand!!! I'm only a balding old accountant what do I know!!!

What part of the country are you living and I'll try to come up with a local reflexology practitioner for you.

Regards Martyn

Blossom234 profile image
Blossom234 in reply topilot44

Hi Martyn thanks for your answer!! :)

I live in Bristol (South West Uk). Might be worth looking into a private reflexologist, although I don't know how much they usually charge. I went to a private osteopath before and they charged me £35 per session.

Thanks x

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