Hi everyone, I take thyroxin for an underactive thyroid, diagnosed with ME and Fibromyalgia.
Over the last few years I seemed to have had a number of problems with my big toes.
First of all 2yrs ago both of my big toe nails came off , they don’t seem to fully adhere to the nail bed even now. When they grew back they grew back in -growing and I had the nails partially removed. They seem to be doing ok at the moment, apart from enormous callous’s on the underneath of both big toes.
Over the last few months I’ve noticed I keep losing sensation in my big toes , it’s like when you’ve been to the dentist and had an injection and it’s wearing off .
I don’t know whether it’s something I should worry about or not .
Wondered whether any one else as come across this ? .
Would be grateful for anyone’s advise . X
Sue ( Scooby doo )
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Can you add your most recent blood test results and ranges
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Low B12 is very common and can cause exactly these type symptoms
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Does your GP do ALL the correct thyroid testing ? If you have copies of your last results it maybe worth posting them for members to comment. How much VitD are you taking ?
Have you had your FT3 tested - ? If Low in the range then it can be linked to Fibro/ME.
There are co-factors to take with VitD - are you taking them ? Magnesium and VitK2-MK7
My Gp is a waste of time as is the neurologist, only do the basics and won’t do anymore.
I’ve had one long battle over 6 yrs .
Lost all faith in the Nhs treatment of my condition, made to feel like an Hypocondriac and a nuisance.
I’ve recently gone gluten free and started different supplements.
I’d read a lot of positive comments about this . I must admit I have felt better .
I hadn’t got the energy or fight left in me to keep battling with the medical profession. So helping myself was a better option .
I use toning tables in my local gym. It’s called the feel good factory and consists of twelve tables targeting different muscles. The tables help you to do as little or as much as your capable of .
Really helped to keep my muscles and joints moving .
I had this feeling in one big toe and then not long after I found I had a rebellious fungal infection! It seemed to set about my toe nail at a ferocious pace! I feel like I painted my toenails a few weeks prior and when I went to clean it off, the whole bloody toe nail came off!! It was soooo gross! 9mths later I’m still dealing with it but it’s better than it was.
If it’s not an infection. Have you had a diabetes test recently?
I had something similar and it was a fungal nail infection which then caused ingrowing toenails. Did the gp not take a nail sample for testing at any point? If you have Hashimoto/ under active thyroid, your circulation will be poor at you feet hence cold etc.
I have same symptoms on my left big toe but no fungal infection .it's just weird numb feeling . I'm same with the heat..feel like I will self combust my hands get so hot ...and sweaty ...so embarrassing..but of course doc says it's just the heat ..everyone is suffering ...sure ..but it's same when it's cold !!! Clearly in my head ..🤔🤔
Have they offered you any pills as I believe there are some that do work ..some women in the NDT thyroid page have said they're on it and works.. I'm thinking of asking as same with my face .... Very embarrassing!
I just checked ..the other lady says she takes probanthine and really helps. I'd never heard of it.ay be worth asking. I had full hysterectomy 20 years ago ..tried hrt for a while ..couldn't find anything that agreed so been off them over 15 years ..I asked go should they not check my hormones but they said no as I long past menopause !!!! Really ?? A blood test should tell us though won't it ???? Hmmmmm drive me crazy
I remember reading that big toe joint problems are a hypo symptom. I have pain in both mine despite being very careful about shoes etc. I was surprised to see it reported as a symptom. I’m sorry I don’t have references, it might be worth doing a Google search. Maybe physio could help? They might advise about braces etc.
Hi, i don’t have issues with the nail like you have but I had this sensation started in my tight big toe about 19yrs ago. Then when I stubbed it so bad and broke the nail half way down and blood spurted out I actually realised it was numb as it didn’t hurt when I did it. I have this sensation most of the time only now it has spread to my scalp, face, Mouth, hands and lower legs. I went to gp and was referred to neuro. They said I had MS symptoms but not actual MS. Never really got to the bottom of it and they just put it down to neuropathic pain and put me on some pregablin, but then as the drug became too expensive I was taken off it and put on a low dose of amitryptaline. I find the more you think about it the worse it gets so I ignore it now as it can be quite irritating. Although mine has developed to other areas and the sensation can go from numb to feeling like it’s just waking up after an injection at the dentist for days or months it hasn’t caused any real problems. Debbie x
I find I am lacking in salt when I start to get cramps in legs and feet, so I increase it for a few days and it stops. I don’t have problems with circulation but the pins and needles can be a pain in the rear. Good luck with your GP x
For what it's worth I have read about 40 books on thyroid problems because I had Graves disease and now hypo- thyroidism and the book that mentions 'big toe problems' is " Hypo-thyroidism - the unsuspected illness " By Broda Barnes and Lawrence Galton. That era of information was well before the synthetic thyroxine and they used natural dessicated thyroid which had a good combination of T4 and T3, which may help your toe to heal.
I had a similar problem with one big toe - fungal infection was ruled out by gp sending off clippings, although many of my nails are thickening too! I paid privately for a podiatrist who removed as much of the old toe nail off (there was another growing through) - since reducing my T4 medication (I was over range) and introducing a small dose of T3, (nhs endo), many of my symptoms have eased, and touch wood, I’ve got a new nail into the bargain!
If you need to wear nail polish for an event take it off within 24 hours - let your nails ‘breathe’. Best of luck. 😊
Callous on underside of big toe could be from you walking or standing with a lot of pressure on the big toe area which would also cause nerve issues in the big toe...just a thought but out of curiosity do you have any hip,lower back,knee or feet pain or weakness in legs while standing or walking besides the numb big toes?
I don’t do a lot of standing or walking due to the ME and Fibromyalgia. Loads of joint problems and weaknesses .
To be honest that’s what I thought calluses was caused by. I was a painter and decorator up till 6yrs ago , working on site wearing steel toe cap shoes. My feet were near perfect then .
Certainly not weird to just start having issues with toe calluses. I use to be a runner doing mostly half marathons and never had too many issues until my thyroidectomy 3 yrs ago until I either developed or always had psoriatic arthritis and this disease has attacked my tendons throughout my lower body (feet,hip,knees and ankles) after my knee surgery last year to fix my tendon I developed a inability to put my heel on the ground it's super close to ground I just can't apply enough pressure to keep my heel planted and because of this I tend to walk on balls of my feet (although not noticeable by strangers) and I pronate due to inner knee weakness because of surgery and that forces my big toe issues even more. For your toe nails falling off I'm unsure what that could be but someone suggested a fungal infection (maybe) or your toes are punching the front of your shoes when you do walk or stand and causes you to have toe nail to jam repeatedly and this is causing your problems (saw this alot with runners) but that deserves a doctor or podiatrist check up to be sure.
I know the issues with unable to walk or stand for any length of time I have had this very issue with this psoriatic arthritis flare that has just made moving nearly impossible at time...just stinks and I hope you get some relief real soon.
Have you had B12 tested? You may benefit from other B vitamins:
"B vitamins for neuropathy (maybe the numbness is a sign?)
B vitamins are useful in treating neuropathy since they support healthy nervous system function. Peripheral neuropathy is sometimes caused by a vitamin B deficiency.
Supplementation should include vitamin B-1 (thiamine and benfotiamine), B-6, and B-12. You may choose to take these separately instead of as a B complex.
Benfotiamine is like vitamin B-1, which is also known as thiamine. It’s thought to reduce pain and inflammation levels and prevent cellular damage.
A deficiency in vitamin B-12 is one cause of peripheral neuropathy. Left untreated, it can cause permanent nerve damage.
Vitamin B-6 may help to maintain the covering on nerve endings. But it’s important that you don’t take more than 200 milligrams (mg) of B-6 per day. Taking higher amounts can lead to nerve damage and cause symptoms of neuropathy."
I've had an under-active thyroid nearly 30 years and have had ingrown toenails on both big toes most of that time. Since then I have gotten Athlete's Foot and my toenails have a fungus that I have been told by a podiatrist to apply some vaseline of Vick's vapo Rub to. I googled these "remedies" and most sites said it contained a certain substance that "could" be of benefit: that is, if that same substance doesn't become toxic & make it worse. Say la vie. Peace be with you.
Hi i am interested to hear about your problem feet. I too have weird feeling in my big toes and also feel my toe nails are in growing. I was worried that it might be diabetes.
I’d be interested to know if anyone else has this problem.
I have hypo thyroid and consistently experience joint soreness in my big toes when under medicated. Also in my hips. And I experience a weird icy/ hot numbish sensation in my right foot especially. I am not 100% sure but it seems to be happening at the end of the day when my dose is wearing off. I take T3 only though, but still - for me these symptoms seem to be around being under- medicated. Just my experience.
Hi, I was first diagnosed with Hypothyroidism years ago, then I had a new GP who refused to accept I had hypothyroidism and refused to repeat my prescription. I then spent 2-3 years feeling really ill. One of the weirdest symptoms was my thumb nails coming away from their beds. I also noticed I had really hard skin on my feet. I would have pins and needles on my hands every morning when I woke up. Along with all the normal symptoms of feeling tired, fluey and my body aching. He then diagnosed me with ME. Anyhow to cut along story short, I managed to get back on levo and the symptoms cleared up and I finally got rid of the ME diagnosis and just a hypothyrodism diagnosis. In that time I went GF and had a course of B12 injections as well as a good increase in levo (125/150). So my gut feeling is the nails and skin are deffo undertreated hypothyroidism, and probably the fibromyalgia and ME! As people have said, check your B12, and your FT3. My conversion is very poor and cause ME symptoms when it goes below a certain level. I feel best when my TSH is suppressed (and the GP hates it!)
Finding a GP that listens is a nightmare. I totally relate to being made to feel like a hypochondriac! I had a fabulous GP before I moved, the Sugery I am at now is a nightmare, they also seem to be the same robotic clones. Any good ones who joined also left quickly! I would say it took me about 8years to get where I am now, and fight the ME diagnosis and get that removed. (I was sent to a CFS clinic and everything) I try to avoid the GP now. For me one of my biggest turn around was tearing up any info I had on ME and stoping trying to google ‘cures’ for ME. I knew in my heart I had a thyroid problem, and that is where I focussed. I so much better now than then. Have you actually got to see an endocrinologist? That’s what i found my GPs where testing me for everything and referring me to everyone except an endo. When I finally got to see one, he said my symptoms were due to hypothyroidism not ME. I got him to write several letters to GP and asked to have the ME diagnosis removed. It has made life a bit simpler now, they can’t blame symptoms on ME any more! Good luck! X
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Painful big toe - gout? Can this really be linked to being under-medicated and hypothyroid??!!!
Thyroid problems ruled out?
Skin after thyroidectomy 
Peripheral Artery Disease?
