Restless legs/cramps from hypothyroidism or hyp... - Thyroid UK

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Restless legs/cramps from hypothyroidism or hyperparathyroidism?

Andaman profile image

Hi,

I have a quite severe case of restless legs/cramps. I've been experiencing tingling, burning sensations, aching and tensed up, hard muscles mostly in my legs but also in arms and sometimes hands. Also leg shaking from the tension and tossing a lot at night.

I definitely have Hashimoto's, though I've only tested my TSH (3.8, so still within the normal range) but have done a sonogram which clearly showed an abnormal thyroid gland. I could have hyperparathyroidism as well due to the fact I had a quite severe vitamin D deficiency (9 ng/ml), now corrected and have elevated calcium levels (at 2.6 mmol/l), though I haven't taken a PTH test yet.

Has anyone here experienced such symptoms from either disease and had them resolve after treatment? Thanks in advance.

53 Replies

A TSH of 3.8 may be within the NHS unrealistic range, but it's still saying hypo. You are hypo when your TSH reaches 3, and in some countries would be treated at that level.

If you have Hashi's, then you could have a lot of nutritional deficiencies. Nutritional deficiencies could be the cause of RLS - especially magnesium. You should get your vit D, vit B12, folate and ferritin tested and supplement according to the results (people on here can help you with that). But, don't bother getting magnesium tested, it's no worth it, the results are unreliable. Just take some and see if it helps. :)

Andaman profile image
Andaman in reply to greygoose

Thanks for the advice! So you're saying those diseases themselves shouldn't cause the symptoms but rather the nutritional deficiencies they trigger. My vitamin D is at 32 ng/mol now. I have been taking magnesium for two weeks and been on a high magnesium diet and at first it seemed to be helping, but now things have got worse again. I have tested my magnesium serum level and it was in the middle of the reference range but I've read it's unreliable, as you're saying. :)

Den1987UK profile image
Den1987UK in reply to Andaman

Hello Andaman Yep same what is your blood pressure reading I get the same and have hypertension due to hypothyroidism including vertigo and dizziness and light headed ness and tension headaches tense muscles.

Mine today is

138 systolic

91 dia

Pulse 78

Also take vitamin D3 with zinc for absorption

B12

Magnesium

Omega 3 supplement

Folate

I am on propranolol 10 mg beta blocker can’t go higher because of Raynauds so having to cut salt and sodium from my diet to lower the blood pressure to right reading. I keep a proper blood pressure monitor and ear thermometer and finger pulse oxygen meter handy so I can check.

Andaman profile image
Andaman in reply to Den1987UK

Hi Den! Last time I checked mine, it was perfectly fine (don't remember the exact figures). So you experience all those symptoms despite taking levo?

Den1987UK profile image
Den1987UK in reply to Andaman

Hello andyman Yep on my Eltroxin Levothyroxine Sodium brand mercury Pharmaceuticals the side effects are high blood pressure and fast pulse and arythmias and some other unwanted side effects like and headaches and muscle weakness. Trying to change brand because I hate the side effects. Already diagnosed with hypertension so not good giving me more high blood pressure. Also have Tachycardia.

Andaman profile image
Andaman in reply to Den1987UK

Oh, I thought the only side effects you could have from levo were the symptoms of hyperthyroidism if your dose was too high... Trying to change the dose?

Den1987UK profile image
Den1987UK in reply to Andaman

Was on 75 mg but increased to 100 mg because was feeling like crud cold all the time anxiety beyond belief and depression was severe hair strands falling out and memory was bad and still is and slow thinking and brain fog was constant but can think clearly on 100 mg and brain fog is less but for 32 it’s scary other side effect I get is shaking hands. But before increasing to 100 mg I felt like I was 80 lol it’s near the right dose not right though but have to change the brand because although I can function a little better the side effects are unbearable. When I was diagnosed with hypothyroidism back in 2016 the doctor prescribed me Levothyroxine brand actavis but my face swelled up and couldn’t breathe and my legs went weak. I felt like I was dying but was a allergic reaction. Some people are allergic to the fillers or ingredients but not the T4 directly.

Andaman profile image
Andaman in reply to Den1987UK

Wow, that sounds terrible. I hope that works out for you. Thanks for sharing your story.

Den1987UK profile image
Den1987UK in reply to Andaman

Hello Andaman you’re welcome yep was very scary myself a guy and my brother both have hypothyroidism. I am only 32 and my brother is 42 so very unusual for two brothers to have it but not nice at all. A year ago I smoked now I don’t my brother gave up smoking he has asthma and hole in his heart archaic disease now unfortunately and blind in one eye. My mum has Arnold Chiari Malformation brain fluid pressure and pressure on spine and heart failure and prolapse disks in back and lymphedema and cellulitis and carpal tunnel syndrome and diabetes and fibromyalgia. I have have hypertension high blood pressure and Tachycardia and Polycythemia blood disorder and hypothyroidism and Raynauds poor circulation.

waveylines profile image
waveylines in reply to Den1987UK

You might want to change to a different beta blocker Den1987 as proponolol interfers with the conversion of thyroid hormones so not suitable if your taking thyroid meds. It made me very ill indeed -causing very high blood pressure. As the proponlol interfered with the conversion of thyroid hormones when I came off proponlol I had to stop my thyroid meds temporarily as once the beta blocker was out of my system my body had a big surge of conversion of T4 to T3 .

JudithW profile image
JudithW in reply to Den1987UK

My blood pressure was high until I started to take T3. Actions of T3 is to in crease Cardiac output, and reduce peripheral resistance, so it follows.

It has also helped and it continues to help skin changes around my ankle, and nearly all round the lower leg. They have grown smaller and are a lot less dark red. Sometimes They nearly seem to have faded completely.

I just want to say I totally feel your pain when it comes to RLS.... don’t know about you but i don’t just feel it in my legs.. it seems to be all over, especially across upper back and shoulders. I’m sorry I’m advance if you’re a guy (I can’t tell from you’re profile) lol, but I suffer it more at certain times of the month - related to my cycle.

I’ve also been getting the tingling in hands and arms, but after a recent blood test showing my B12 levels low Ive done research and found this to be a symptom. Maybe you could get B12 tested if you haven’t already?

Andaman profile image
Andaman in reply to HollieBerry

Thanks! Yes, it's really terrible and I feel it in my shoulders too. Yes, I'm a guy, and the picture must have been randomly assigned to me :D.

I have tested my B12, it was 325 pg/nml, so rather low. I've been supplementing it for a long time, because I'm vegan.

Astridnova profile image
Astridnova in reply to Andaman

Are you supplementing with frequent injections of B12, or with oral ones. I looked at a study comparing vegans, omnivores and vegetarians and all the vegans were suboptimal on b12. 2010 article compares B12 in vegan, vegetarian & omnivores

Serum concentrations of vitamin B12 and folate in British male omnivores, vegetarians and vegans: results from a cross-sectional analysis of the EPIC-Oxford cohort study

Gilsing, A M ; Crowe, F ; Lloyd-Wright, Z ; Sanders, T A ; Appleby, P ; Allen, N ; Key, T

European Journal of Clinical Nutrition, Sep 2010, Vol.64(9), pp.933-9 [Peer-reviewed journal]

Download here: go.galegroup.com.ezproxy.sl...

Andaman profile image
Andaman in reply to Astridnova

Oral B12, hydroxyocobalamin, 400% of the RDI, so you'd think that would be enough. Thanks for taking the time to dig up the study, but unfortunately I don't have an account on that website, so I can't download it.

waveylines profile image
waveylines in reply to Andaman

Andaman you only absorb a tiny amount of oral b12 -you might find the Betterthan B12 spray better. You spray under your tongue.

Astridnova profile image
Astridnova in reply to Andaman

Sorry Andaman. I've copied and pasted a few abstracts of that and similar studies. The last one shows how a cross-section of mothers with various diets can be deficient in B12, despite what they eat. It uses very low standards for therapeutic levels of b12 too, in my opinion. See study abstracts below:

Gilsing, A.M.J. et al., (Sept 1, 2010): “Serum concentrations of vitamin B12 and folate in British male omnivores, vegetarians and vegans: results from a cross-sectional analysis of the EPIC-oxford cohort study.” In European Journal of Clinical Nutrition (2010) 64, 933-939; doi:10.1038/ejcn.2010.142; published online 21 July 2010.

dx.doi.org.ezproxy.slv.vic....

Document controls

Abstract:

Background/Objectives: Vegans, and to a lesser extent vegetarians, have low average circulating concentrations of vitamin B12; however, the relation between factors such as age or time on these diets and vitamin B12 concentrations is not clear. The objectives of this study were to investigate differences in serum vitamin B12 and folate concentrations between omnivores, vegetarians and vegans and to ascertain whether vitamin B12 concentrations differed by age and time on the diet.

Subjects/Methods: A cross-sectional analysis involving 689 men (226 omnivores, 231 vegetarians and 232 vegans) from the European Prospective Investigation into Cancer and Nutrition Oxford cohort.

Results: Mean serum vitamin B12 was highest among omnivores (281, 95% CI: 270-292 pmol/l), intermediate among vegetarians (182, 95% CI: 175-189 pmol/l) and lowest among vegans (122, 95% CI: 117-127 pmol/l). In all, 52% of vegans, 7% of vegetarians and one omnivore were classified as vitamin B12 deficient (defined as serum vitamin B12 < 118pmol/l). There was no significant association between age or duration of adherence to a vegetarian or a vegan diet and serum vitamin B12. In contrast, folate concentrations were highest among vegans, intermediate among vegetarians and lowest among omnivores, but only two men (both omnivores) were categorized as folate deficient (defined as serum folate < 6.3 nmol/l).

Conclusion: Vegans have lower vitamin B12 concentrations, but higher folate concentrations, than vegetarians and omnivores. Half of the vegans were categorized as vitamin B12 deficient and would be expected to have a higher risk of developing clinical symptoms related to vitamin B12 deficiency.

European Journal of Clinical Nutrition (2010) 64, 933-939; doi:10.1038/ejcn.2010.142; published online 21 July 2010

Plasma total homocysteine status of vegetarians compared with omnivores: a systematic review and meta-analysis

Obersby, Derek; Chappell, David C; Dunnett, Andrew; Tsiami, Amalia A.The British Journal of Nutrition; Cambridge Vol. 109, Iss. 5, (Mar 14, 2013): 785-94. DOI:10.1017/S000711451200520X

Abstract

Translate

There is strong evidence indicating that elevated plasma total homocysteine (tHcy) levels are a major independent biomarker and/or a contributor to chronic conditions, such as CVD. A deficiency of vitamin B12 can elevate homocysteine. Vegetarians are a group of the population who are potentially at greater risk of vitamin B12 deficiency than omnivores. This is the first systematic review and meta-analysis to appraise a range of studies that compared the homocysteine and vitamin B12 levels of vegetarians and omnivores. The search methods employed identified 443 entries, from which, by screening using set inclusion and exclusion criteria, six eligible cohort case studies and eleven cross-sectional studies from 1999 to 2010 were revealed, which compared concentrations of plasma tHcy and serum vitamin B12 of omnivores, lactovegetarians or lacto-ovovegetarians and vegans. Of the identified seventeen studies (3230 participants), only two studies reported that vegan concentrations of plasma tHcy and serum vitamin B12 did not differ from omnivores. The present study confirmed that an inverse relationship exists between plasma tHcy and serum vitamin B12, from which it can be concluded that the usual dietary source of vitamin B12 is animal products and those who choose to omit or restrict these products are destined to become vitamin B12 deficient. At present, the available supplement, which is usually used for fortification of food, is the unreliable cyanocobalamin. A well-designed study is needed to investigate a reliable and suitable supplement to normalize the elevated plasma tHcy of a high majority of vegetarians. This would fill the gaps in the present nutritional scientific knowledge. [PUBLICATION ABSTRACT]

MM Boanca˘ 1 , HA Colosi2 and EC Cra˘ciun3, “The impact of the lacto-ovo vegetarian diet on the erythrocyte superoxide dismutase activity: a study in the Romanian population,” European Journal of Clinical Nutrition; London Vol. 68, Iss. 2, (Feb 2014): 184-8. DOI:10.1038/ejcn.2013.179

BACKGROUND/OBJECTIVES: Recent studies have shown that vitamin B12 scavenges superoxide anion as effectively as superoxide dismutase (SOD), and has a key role in the defense against oxidative stress. The status of vitamin B12 is suboptimal in a substantial number of vegans and even vegetarians. We therefore evaluated in lacto-ovo vegetarians (LOVs) who did not take vitamin B12 supplements the impact of the duration of this diet on the vitamin B12 status, the erythrocyte SOD activity and the serum malondialdehyde (MDA) concentration. SUBJECTS/METHODS: The study group included 38 non-vegetarians and 48 LOVs divided, according to the duration of this diet, into two subgroups: LOV1 (2–10 years) and LOV2 (11–29 years). The erythrocyte SOD activity and the serum concentrations of vitamin B12 and MDA were assayed. RESULTS: In LOVs, the mean serum vitamin B12 concentration, the erythrocyte SOD activity and the mean serum MDA concentration were statistically significantly lower that in non-vegetarians. No significant association between the serum vitamin B12 and MDA concentrations and the duration of the LOV diet were observed. A significant inverse linear correlation between SOD activity and the duration of adherence to LOV diet was observed in LOVs. CONCLUSIONS: The duration of LOV diet has impact only on SOD activity. Further researches, both in vitro and in vivo, are necessary to understand the underlying molecular mechanism. European Journal of Clinical Nutrition (2014) 68, 184–188; doi:10.1038/ejcn.2013.179; published online 9 October 2013

Vitamin B12 status in women of childbearing age in the UK and its relationship with national nutrient intake guidelines: results from two National Diet and Nutrition Surveys

OPEN ACCESS bmjopen.bmj.com/content/bmj...

This study shows the prevalence of VitB12 insufficiency despite apparently adequate diets in some women. [In fact the therapeutic levels are so low compare to those of Japan that the study seems very conservative to me.]

ABSTRACT Objective: To assess serum B12, folate and the associated homocysteine (Hcy) levels among women of childbearing age in the UK and examine their association with dietary intake in relation to the UK Recommended Nutrient Intakes (RNIs) for B12 and folate. Design: Cross-sectional study. Setting: Data from two publicly available National Diet and Nutrition Surveys (NDNS 2000/2001 and 2008/ 2012) were used. These were population-based surveys of randomly selected samples of adults which were carried out in their households. Participants: Women of childbearing age (aged 19–39 years), representative of the UK population. Those who were pregnant or breastfeeding were excluded. Outcome measures: The associations between micronutrient intakes and blood levels of B12, folate and Hcy were assessed by correlation and stepwise linear regression. B12 intake was divided into quintiles and plotted against blood B12 and Hcy concentrations to determine the threshold of any associations. Results: 299 women from the first NDNS cohort had complete intake and biomarker data. The prevalence of serum vitamin B12 (≤150 pmol/L) and serum folate (≤10 nmol/L) deficiency and hyperhomocysteinemia (≥12 µmol/L) was 12.4%, 6.4% and 21.2%, respectively, despite seemingly adequate B12 intakes (median 3.8 μg/ day, 96% consumed more than the UK RNI of 1.5 μg/ day). B12 concentrations increased across all quintiles of intake with serum levels in quintiles 4 and 5 (median intake 4.9 and 7.1 μg/day, respectively) significantly higher than quintile 1. However, Hcy concentrations levelled off between quintiles 4 and 5. Comparison of micronutrient intake between the two surveys found that folate intake has reduced in the more recent cohort. Conclusions: The UK RNI for B12 intake should be increased for women of childbearing age with intakes of around 5–7 μg/day likely to be associated with stable biomarker levels. B12 levels should also be measured in women preconceptionally

Andaman profile image
Andaman in reply to Astridnova

Thanks a lot!

SlowDragon profile image
SlowDragonAdministrator

Calcium rises when taking high dose vitamin D supplements

Hashimoto's almost always causes vitamin D deficiency

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

Presumably you have been on LOADING dose of vitamin D prescription from GP?

Local CCG guidelines

clinox.info/clinical-suppor...

On vitamin D supplements, it can make magnesium deficiency more obvious. Low magnesium and low vitamin D go together

Low magnesium can be cause of restless legs

Links about Magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Bone pain

easy-immune-health.com/pain...

Vitamin K2 mk7 helps send calcium into bones and lowers calcium levels in blood

betterbones.com/bone-nutrit...

intechopen.com/books/cell-s...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

Get B12, folate and ferritin tested by GP

Plus coeliac blood test

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone. All four vitamins need to be OPTIMAL

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

That's a lot of reading, thanks, much appreciated! Yes, I used loading doses for a month, but finished the course 2 months ago, retested recently and got elevated calcium results (they were fine before) so I wonder if that could have still had an effect. Vitamin D jumped to 32 ng/mol, so perhaps there's still room for improvement. I have tested ferritin and B12 as well - and they were at 62,7 ng/ml and 325 pg/ml.

SlowDragon profile image
SlowDragonAdministrator in reply to Andaman

As a vegan with Hashimoto's it's likely you will need to supplement continuously vitamin D, Vitamin B complex and regularly retest iron. Likely to need high iron diet , which is much harder on plant based diet

Little vitamin D in vegan diet

Are you on strictly gluten free diet?

Andaman profile image
Andaman in reply to SlowDragon

I take a multivitamin, but without iron and vitamin D (as the multivitamin only has a little of it). Interestingly though, my iron was in the middle of the reference range (118 micrograms/dl) when I tested it 3 months ago.

Oh yes, thank you for the info and links about the gluten-free diet! I'm almost gluten-free, I sometimes have some bread.

SlowDragon profile image
SlowDragonAdministrator in reply to Andaman

You can't be almost gluten free......as explained by this link

chriskresser.com/the-gluten...

Avoiding absolutely all gluten....avoiding all cross contamination do not share butter, chopping board, separate toaster for GF bread

Read ALL labels carefully

Andaman profile image
Andaman in reply to SlowDragon

Oh, I didn't know about that. Very interesting read, thanks!

SlowDragon profile image
SlowDragonAdministrator in reply to Andaman

Does your multivitamin have calcium in?

Andaman profile image
Andaman in reply to SlowDragon

No! It only has vitamins. And the weird thing is I recently found I had not even been getting enough calcium as I had been going by the info nutritiondata.self.com to formulate my diet. But it turned out the tofu I had been buying had a lower calcium and iron content. So I had been getting way too little calcium for a long time. But in spite of that, my calcium levels have consistently been high and exceeded the reference range after supplementing vitamin D. That's why I thought I might have hyperparathyroidism.

SlowDragon profile image
SlowDragonAdministrator in reply to Andaman

Tofu is made from soybeans

Soya should be completely avoided when thyroid is playing up as it affects how Thyroid hormones are used

thyroidpharmacist.com/artic...

sarosent profile image
sarosent in reply to Andaman

I had hyperparathyroidism, and while I had muscle flicks and weakness, didn't have restless legs until later - when my ferritin was low. That is always a big clue for me, the restless legs = low ferritin.

Someone else can comment on the range but I think it should be at least 80 ?, and seeing as you're a vegan, you really need to make sure you are getting enough iron. I have and continue to eat beef several times a week and now have liver sausage every morning, but still need to supplement.

Andaman profile image
Andaman in reply to sarosent

Interesting, thanks for sharing! My iron was in the middle of the range when I checked it 3 months ago.

Den1987UK profile image
Den1987UK in reply to Andaman

Hello Andaman Fish is good I have loads of fatty fish like mackerel and tuna and supplement with omega 3 for brain function. I don’t touch bread or fried food or table salt of butter. Only white fresh meat chicken and turkey and loads of fresh fruit and vegetables. Also avoid soya at all costs. Read labels to see what’s in the food at supermarkets or shops. Avacados are very good food I also drink three ginger tea with turmeric for reducing inflammation. Also I have elderberries and pro biotic yoghurts. As well vitamin supplements D3 B12 Zinc magnesium and folate and K2 and drink fresh orange juice for vitamin C. But being vegan should not be a problem just take supplements on a daily basis to keep levels optimal and get blood tests done regularly.

SlowDragon profile image
SlowDragonAdministrator in reply to Andaman

B12 is likely too low at 325

Jarrow sublingual B12 or Better You vitamin B12 mouth spray may be necessary to improve levels

Just bare in mind that when you need to supplement its often for life. As thyroid patients we are continually losing such things so need to keep topping up so once optimal we need to find a maintenance dose to keep it there.

I would suspect B12 deficiency, which is very serious, so needs treatment. Typically injections of methocobalamin. Often present with hypothyroidism, diabetes and Crojn's disease (however spelled).

Andaman profile image
Andaman in reply to Astridnova

But my B12 levels aren't that bad? 325 pg/ml.

Astridnova profile image
Astridnova in reply to Andaman

The Anglosphere has very low therapeutic levels standards. The Japanese expect you to be above 500. Personally I had quite bad symptoms with over 400. Go by the symptoms. This article contains a number of medical videos about B12 deficiency, which might help you to evaluate your situation. candobetter.net/node/4463

Andaman profile image
Andaman in reply to Astridnova

Thanks! What were your symptoms and did you check your MMA as well?

Astridnova profile image
Astridnova in reply to Andaman

My most dramatic symptom was bouts of vertigo. I could only stand on one leg with my eyes closed for a few seconds before losing my balance (Romberg test). I also suffered from fatigue, deteriorating memory, disorganisation, word-finding difficulties (especially one where I would say a word without difficulty and then would not be able to repeat it in the next sentence). I also had restless and weak legs. I had a bunch of other signs and symptoms but I also had hypothyroidism (diagnosed a couple of years later) so I am not sure which belonged to which. I can tell you that I self inject weekly now and I can do the Romberg test well - like for a minute or something. I realised that I was heading for dementia if untreated.

I forgot to say that I never had an MMA test.

Yes I had this for years while under/inadequately medicated. I used magnesium cream on affected areas (left lower leg, outside left upper leg and forearms). I also used a tens machine, they’re relatively small and cheap now, lots of different pulses and when I found the right setting I’d be able to drift of to sleep. Ultimately what ‘cured’ me was being optimally treated.

Andaman profile image
Andaman in reply to NWA6

Thanks for sharing your experience. What do you mean by "inadequately medicated"?

NWA6 profile image
NWA6 in reply to Andaman

I was on too low a dose of Levothyroxine because my GP didn’t understand that we should be guided by FT4/3 results plus symptoms and then after 10yrs I found that I actually don’t convert my Levo very well and needed to add T3 to my day. When I did this my symtoms all abated.

Den1987UK profile image
Den1987UK in reply to Andaman

Hello Andaman it means Being under active for far far too long I was under active for a while and had electric shocks nerve pain and tingling in fingers and toes feeling cold brain fog and heart palpitations and high blood pressure and pulse muscle aches fatigue muscle tremors headaches anxiety and depression and Trouble sleeping and double vision. Doctors think TSH is the gold standard it’s not FT3 and FT4 and tpo and tg and thyroid function and ultrasound scan on thyroid is the gold standard.

I don't tend to differentiate between muscle spasm, muscle cramps, restless legs and benign fasciculations (look it up in Youtube if you don't know what fasciculations are - they aren't rude).

As far as I'm concerned all these muscle issues are usually caused by low levels of nutrients of one type or another.

Having low levels of any of the following can all cause muscle problems, and I've never bothered disentangling which one caused which problem in myself.

Magnesium

Iron / ferritin

Vitamin B12

Folate

Vitamin D

Potassium

Sodium

If I get restless legs at night I would do one or more of the following :

1) Take a dose of magnesium supplements.

2) Take a couple of potassium supplements.

3) Take a vitamin D supplement.

4) Make a mug of Marigold vegetable bouillon powder and drink it. They also make a vegan version. It contains quite a lot of salt (for the sodium) :

tesco.com/groceries/en-GB/p...

If I don't have any of the Marigold stuff I would drink some salted water.

If muscle issues go after taking magnesium I stop there. If muscle issues go after potassium I stop there. And so on...

If you know that you always have low folate you could try taking a folate supplement. Ditto with B12.

If you've tried everything you can think and your legs are still restless or cramping then you have to consider whether you should get your iron and ferritin levels tested. I wouldn't take iron pills without knowing that I was below optimal in iron, even for restless legs.

If you have ever looked at the page about restless legs on wikipedia, it gives just one sentence referring to iron...

There is some evidence that intravenous iron supplementation moderately improves restlessness for people with RLS.

It used to say a LOT more. It said that restless legs were helped by keeping ferritin above 50 (can't remember units), and in some cases keeping it above 80 was necessary to stop restless legs. I assume that keeping things simple and not necessarily using expensive pharmaceutical products wasn't approved of by the powers that be, so the useful information was eliminated and it now requires patients to see a doctor / use a hospital / do something expensive because people who want to make money weren't getting any if people helped themselves.

If people want to help themselves with non-pharmaceutical products for raising iron then eating iron-rich food would be a good start. See this website for more info :

dailyiron.net/

Good luck.

...

You'll notice that I haven't mentioned anything about hyperparathyroidism. That's because I know almost zero about it! A useful website that may be helpful which you've probably found already :

parathyroid.com/

Good luck.

Andaman profile image
Andaman in reply to humanbean

That's a lot of info, thanks! So your symptoms disappear soon after you take a supplement?

Yeah, I know about the website - plenty of info, HOWEVER, while trying to find more info about the clinic I came across this:

justice.gov/usao-mdfl/pr/ow...

So I'm not sure what to really think about Dr James Norman. That made me a bit sceptical.

humanbean profile image
humanbean in reply to Andaman

If the problem I have at the time I'm getting cramp or restless legs or other muscle issue is low magnesium then the problem disappears within about 10 minutes of taking magnesium. If I have some powdered magnesium (e,g, magnesium citrate, which is what I keep in stock) it is quicker.

The same is true of low sodium or low potassium, except I would expect it to work within about 5 - 10 minutes.

I don't take massive doses of any of these things, I usually take no more than half a dose as suggested on the bottle (if I'm talking about supplements). I'd take the other half if I found it necessary and I was getting desperate.

These days my muscle problems are normally kept at bay by keeping my ferritin fairly close to optimal. I only rarely need to take magnesium, potassium or sodium. I almost never need to try vitamin D, B12, or folate, for restless legs and these are only tried when desperation sets in. If they don't work then I'm stuck with the restless legs or cramp or whatever.

humanbean profile image
humanbean in reply to Andaman

Regarding the doctor you mentioned, I only passed on the parathyroid website address for the generous levels of information it supplies. I know absolutely nothing about the person or people who run it.

I dont hav RL but have fasciculations... weird twitching which looks like something crawling under the skin. I’m hypo/hashi

Iron deficiency with low ferritin levels may be another reason as indicated by other members. If oxygen cannot reach the muscle cells, there is a tendency for cramps and restless legs. If you find it is worse with exercise it might be too high lactic acid in the blood.

There is an association with diabetes and lactic acid and ketosis. Drinking water can help oxygen levels in the blood as it is composed of oxygen and hydrogen. Eating too much dairy is another factor with calcium. Vegans tend to be lower in iron. Not sure if you have milk in your diet or cheese. If you are eating sugar in tomato and fruit juice, and other healthy fruits, sometimes you can have associated diabetes. If you have not had a test for pre diabetes, then it might be advisable to cross it off the list. I had a spell of restless legs and pain in thighs drinking coconut milk with D2 added. I went lactose free, and had to cut down on grains, only eating oats, as they contain avenin, not gluten. This helped. My calcium went too high as well. Cutting down on calcium rich foods did help, and the dentist noticed dental plaque was lower. I also eat more vitamin K in food, high in vegetables and kiwi fruit. There is a good food data website for vitamins minerals and essential myfoodata.com.

As previously mentioned by Shaws, vitamin K and d work together, to stop the arteries from clogging with calcified plaque with fat. Cutting down saturated fats, such as some vegetable oils which may contain canola, or rape seed, may help as they have been shown to raise cholesterol in the blood. Virgin olive may be a good substitute or omega 3 sunflower seed oil, in Flora original, may help. People say coconut oil is not good for you but Have found it can help the nervous system, and it contains lauric acid which prevents infections and viruses. Having a history of pneumonia, the coconut oil taken in a teaspoon or spread on a biscuit or added to vegetable casseroles has helped my immune system. hope you get tests for iron ferritin and pre diabetes. Foods which might help muscles are bananas, tomatoes, which contain potassium and magnesium. Further information shows zinc deficiency may affect your muscles and skin. Selenium and zinc and vitamin C help your thyroid and can be found in supplements. Vitamin D and iron deficiency go hand in hand, No need to reply

Andaman you only absorb a tiny amount of b12 from an oral supplement. You may find you get better uptake with a spray. The Betterthan B12 is a popular one. You spray under your tongue.

I found that I have not been troubled byRLS or muscle problems since changing from Levo to NDT. Even when lax with keeping magnesium optimal they have not returned to levels experienced before changing.

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Andaman in reply to lidoplace

Not an option for me but thanks.

Sorry to here that but curious to know why ?

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Andaman in reply to lidoplace

I'm vegan.

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