I posted a few days ago about my private prescription for ndt , [hope I'm allowed to post that bit]🙈 , I am at the moment waiting on the delivery of said medication and hoping it works for me.
In the meantime I have received the endocrinologists report and have now received a gp appointment for tomorrow [ bloody shocked😮] as no one at my surgery as bothered about my TSH being 45.6 ..I've not taken any thyroid hormone for over 2wks now so this level will inevitably be rising everyday.
But the last few years I've been having weird symptoms in my legs, for which I have mentioned in previous posts, I put these symptoms down to my diagnosis of primary hyperparathyroidism ,but I'm unsure it's linked solely to the condition.
It only effects me at bedtime around early morning 2.30/3.30 it's like clockwork and always wakes me...First with burning feet [ not diabetic been tested for that], then the vibrations down the legs from the pubic bone,I'd say like weakness , my bones feel like they are actually vibrating [ much the same if you sit on your mobile phone when it vibrates 🤷♀️ strange I know!! Then I sweat profusely with the vibrations constant..but I'm starting to notice I'm now having the sensation in the day to.
My mother and aunt on my father's side both died of motor neurons disease, and I always remember the specialist who dealt with both my mother and aunt..[ he was shocked I had an aunt who was under him who died of it, and now my own mother] he urged me to always question any neurological problems I have, that's why when I started to have tremors before I got my hyperthyroidism [ graves diagnosis] I asked about motor neurons and was utterly dismissed by the very gp who couldn't even diagnosed my graves disease 😡.
Obviously the tremors were linked to graves, but even after full thyroidectomy the tremors although they have diminished have never really gone totally, my mother's first symptoms presented as weird sensations in her legs, both myself and my brother just thought it was age related [ she was in her late 60s], but over time her legs became weak , and she had several falls .
Unfortunately it took the surgery over 13 months or so to actually do something and she was referred to Newcastle hospital where she eventually got the awful diagnosis.
I want to mention these symptoms to the gp I see tomorrow, but obviously this appointment is in relation to synthetic thyroid hormone not working for me, I have also been informed to mention to the gp I will be taking ndt prescribed by roseway , but I'm unable to continue funding it indefinitely , I just feel nothing will be achieved tomorrow with this gp😢 and honesty don't know what to do for my mental and physical health , i have been very unwell these past few weeks and know the very fact my TSH at 45.6 will factor in some of my symptoms ,and the very fact im now not on any thyroid medication will to🤦♀️
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birkie
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Hello, & good luck with the natural hormone treatment. Do you think it might be “restless legs” & that it might be helped by some regular big doses of magnesium. I know your digestion is a problem so maybe you could also use magnesium bath salts & spray. Lots of info online if you research. I think you can even make your own spray. I bought cheap mineral bath salts from Superdrug recently.
Remember to take any tablets of magnesium 4 hours away from your hormone. I think I’ve read that taking magnesium at the time of an attack can help.. good luck with appointment
Agree with both replies above - I was going to say restless leg also.
I had it while pregnant and it does pop up infrequently. It is indeed a weird buzzy feeling, not tremors or shaking, but a deep internal electric buzz, for me it makes me feel claustrophobic like I want to jump out of my skin.
But also agree with SD obviously pursue the motor neuron thing as you go.
I don't know about restless leg🤷♂️ but it alway starts with my feet burning..when I turn over in bed I get this sensation from my pubic bone right down my large leg bones ..like I'm sitting on a vibrating table, then for some reason I start sweating profusely and now I'm getting it in the day to that's why I posted my concerns.
I purchased the Harrogate magnesium spray 2 bottles [ not cheep stuff] I religiously applied it before bed for over 3 months ,it did nothing, and I don't have a bath only a shower so can't soak 😔 I've tried all the remedies, even ice socks, which just became warm after a few minutes, I have an ice fan at my feet which are always outside the bed.
I'm also wondering if low B12 could be a cause 🤷♂️ as mine is in range but low 325 the top level is 700..I've tried B12 tablets and spray but like vit D they effected my stomach and gut.
I did ask for B12 injections and a gp agreed after looking at my levels, but for some reason nothing was done and I enquired again, but got a different gp who just told me my B12 was fine at 325 so no injections would be given😡
I can't remember if I ever pointed you at my blog entry for burning feet?
Quite possibly nothing relevant or helpful but it seems better to say something than not.
helvella - Burning Feet
This is my blog page about Burning Feet. You might find something helpful there. It links to a comprehensive (though fairly short) article about burning feet. And a couple of other relevant articles. Plus a couple of links to some products which might help.
I've gone on to several sites nhs ect to try to determine why my feet burn, gp did diabetes test and I'm fine, well within range, as I said I mentioned B12 to a gp last year who agreed to some injections due to stomach/gut issues with the tablets and sprays.
But as I said other gp refused it, I even told the gp my son would pay for me to have the injections, I've just gone through some bloods taking at Liverpool this year,found a B12
At 363...RANGE...197.00...771.00] there's room for improvement in the range I reckon.
Yes I'm reading it, hoping to get something I can talk with this gp about and not the bleeding obvious..."it could be diabetes " because that's what I always get, eventhough I show them the blood test results for diabetes being normal 😡 they just leave me to my own devices and seem to have no idea about what to do🤦
Hi Birkie. So glad you have got NDT to try. Fingers crossed it works for you. I take on board everything you've said re. motor neurone disease and your family history, which will be a great worry re. symptoms you have in your legs and the vibrations.
In hypothyroidism the deep tendon reflexes are affected, one of which is the ankle jerk reflex associated with S1 nerve root. (Woltman Sign) A common site of back problems is S1/L5. I have a huge nerve entrapment history re. this and had back surgery in 2007 to shave the L5 disc, as the S1 nerve root was trapped at least 6-7 years. In hypothyroidism we tend to get nerve entrapment. It can be sciatic where the legs, ankles and feet are affected., and tarsal tunnel syndrome would also affect the feet.The deep tendon reflexes in the arms can cause cubital tunnel syndrome and carpal tunnel syndrome, for example( aka tennis elbow and golfer's elbow) . You are very hypo at the moment.
I wonder ( personal opinion) if the burning feet you experience is actually positive , and a good thing, rather than bad. If you have nerve entrapment, and the nerve is temporarily released (perhaps because lying down in a position which takes pressure off the nerve) , circulation to the legs and feet may be boosted or restored. What position are you in when in bed and it happens? Your position may be affecting how much the nerve is impinged or freed off.
Is the burning feet sensation a burning, painful nerve pain, or is it boiling hot feet in that circulation is restored to the feet when you might normally have cold feet? The vibrations could possibly be due to trapped and un- trapped nerve irritation, where pressure is being released ,then reapplied???
Your vit B12 is far too low,and this will be contributing as B12 and the B vitamins are involved in good nerve conduction. Ideally, your B12 needs to be about double the level it is at present, in my opinion.
During the day when you are having the problem now, pay attention to what you are wearing on your feet. Unsupportive footwear may also be causing you problems. Slippers may not offer the support you need. OR, does it start up when you have changed your shoes to outdoor ones? You might be better or worse depending on what footwear you have on your feet. OR is it a particular chair you are sitting on?
As regards magnesium, you can order magnesium soap on the internet via iherb site. There are good reviews on the internet for "Sweet Bee", sweet sleep magnesium butter with lavender which people use on the soles of their feet, ankles and lower legs before they go to bed at night. I always meant to try it , but haven't as yet. Like everything, its quite expensive, but sounds lovely.
When you get the leg and feet symptoms, you could try lying flat on your face and leaning on your elbows to see if it makes it worse , better or has no effect. Then, if you can, straighten your arms so that your back is arching back and hold. If these measures affect it you have a nerve that is being irritated by entrapment, which the exercise may be freeing off.
I have a complicated medical history, not only do I have the thyroid problem but I also have primary hyperparathyroidism which is bone related, when walking I feel my pain is like my bones are rubbing bone on bone.I wear sketches trainers with sole protection and support, I really don't know why turning over causes this weird vibration ,the pubic bone vibrations are unsettling, then the sweating, I get anxiety when I have to turn over because I know what's coming, I'm literally soaked in sweat.
As for the burning feet well I could set my watch to when it happens ,which in its self is weird ,always around 2.30/ 3.00💁♀️ WHY?? It lasts around a couple of hours..I spray them with cold water use my ice fan, they are permanently outside the bed..I can only describe them as someone holding my feet to a fire , they feel hot to touch also.
I tried putting the ibuprofen gel on them at night [ gp gave me it for joint pains] but it doesn't work, I have ostiopeania in my spine and calcification in both ankle joints and knee joints so I've a lot going on🤦 but I agree on B12 ..but today the gp appointment was only to discuss the urgent appointment with an endocrinologist who will pescribe NDT..she didn't want to discuss anything else 😡 I asked her what this urgent endocrinologist appointment would achieve? As 4 endocrinologist in the NHS refused me NDT...who are you going to send me to?.
I also mentioned I was taking a private prescription for NDT my son as paid for me to try it...she then said.."ho good just stay on that then"...I pointed out my son could not afford the prescription every month ,and I'm on disability living allowance 🤦♀️ she then said OK I'll sort the urgent endo referral for you....Good god what a shambles 😡
A doctor who has since died and was hypothyroid himself , but helped a lot of thyroid patients, had cellular resistance to thyroid hormone. He took a large dose of T3 only, and believed the receptors needed flooding at 3a.m, which was when he took his daily dose.
You most certainly do have low T3. I don't know whether or not your peculiar symptoms appearing like clockwork at 2.30a.m-3a.m. could be to do with low T3 or not. It is the time of day that he believed he had to flood his receptors with T3, however. Whether this is just a coincidence, I don't know, Birkie. Someone else with more knowledge than me re. this may have an opinion???
check your b12, d3 ...both can trigger odd sensations when low or low normal....low b12 especially for the tingling sensations legs and feet which my friend had...supplemented w biliqual b12 and used home device near infrared red light therapy and it gradually went away and his felt like standing on burning sand he said and he was low normal b12 so that can cause it, d3 more so for aches pains and exhaustion....and common to be low w both. also check electrolytes which can cause weird sensations i experienced myself....and oddly many drs ignore this...i supplement w b12 and d3 w k2 in it, and found at one point my potassium had dropped to bottom of low normal causing weird sensations in feet, legs, calves, face, and stomach and raised it w food, also i take magnesium b4 bed nightly which magnesium has over 300 functions in the body which help w sleep , elimination, etc and restless leg for many
This is a big problem for me....I tried vit d [ I have primary hyperparathyroidism my vit d was inadequate at 29 but I just couldn't stomach the vit d in any form,,same with the B12 I tried tablets, spray just couldn't stomach it🤮 I asked about B12 injections to which one gp agreed, then I saw another gp who said my B12 at 363 was good [ range is 197.00....771.00] no gp will listen they have just thrown me on the scrap heap😡
Hi birke your symptoms seem very similar to mine which lead to my diagnosis of hyperthyroidism. What I want to say is that most of these systems may very well go with meditation. Which is good news. Like you I would wake at around 3am desperate for the toilet with my feet and lower legs burning. Once I was out of bed, my temperature would plummet and I would begin to shake beginning with my legs and progressing up ward to my jaw and teeth. Eventually tests should my TSH at 32 and I was put on 50mcg. It took quite a few months for these symptoms to calm down and I also did some meditation for my vagus nerve which finally stopped my night tremors.
I actually was hyperthyroid [ graves thyrotoxicosis] in 2018 I lost my thyroid in 2019 my t4 was 100 my t3 was 39.6 TSH undetectable. Since 2019 I've been hypo but I still sweat profusely and have the vibrations in my legs and weakness, but I also have primary hyperparathyroidism which is bone related so I have a lot going on health wise 🙈
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