Agonising night cramps - all suggestions appreciated.

[Trill]

I believe they can be one of the delights of hypothyroidism? For a few years I have taken one magnesium in the morning and the problem went away. Only to return now. I have to be careful as also Chronic Kidney Disease Stage 3a but I can't put up with this pain. Not every night but frequently enough not to want to find a cause and a remedy. I was awake 2 hours last night from 4am because of it. Someone in our knowledgeable community might know. Am posting same in kidney section as I believe there is also another connection there. Thanks, guys.

[SlowDragon Administrator]

Perhaps time to retest thyroid levels as last test shows low Ft3

healthunlocked.com/thyroidu...

Have you tried magnesium spray or oil or magnesium flakes in bath. Al, ways of getting magnesium levels up without using supplements

[Trill in reply to SlowDragon]

Good idea but I can't do it on NHS, can I? And if I could, it's the GP fear coming over me all over again. Then, if it was low, I have no way as far as I can see, of obtaining F3? I see people always asking for it, but it seems very 'under the counter'. Anyway, I wonder if that could be it? Not tried a spray or flakes, but once I use up my capsules of Mg, I will.

[Trill in reply to SlowDragon]

Ah. I have your last recommendation: 'A small increase in Levothyroxine might help increase low FT3. And improve CKD

If it doesn't, then look at seeing endocrinologist for prescription for small dose of T3 '.

Is this realistic in the present state of the NHS? I am not being sarcastic.

[SlowDragon Administrator in reply to Trill]

I get my T3 On NHS. Only finally prescribed in 2017

I had to fight hard and was extremely unwell for over 20 years on just Levothyroxine (more on my profile)

Getting DIO2 gene test can help persuade NHS to prescribe assuming you test positive

thyroiduk.org.uk/tuk/testin...

Alternatively there are endocrinologists on Thyroid Uk list of recommended thyroid specialists who will prescribe T3 privately

Email Dionne at Thyroid Uk for list

thyroiduk.org.uk/tuk/About_...

[Trill in reply to SlowDragon]

Thanks, SlowDragon. Wonder what you think of bovine serum? A clinical paper rated it as effective as Levo, without the restrictions on time taken. I must look into that test.

[SlowDragon Administrator in reply to Trill]

Never heard of bovine serum

Posts about Metavive

healthunlocked.com/search/p...

[Trill in reply to SlowDragon]

It's what in US is called Armour, but further reading rules it out for over-65s, as it has 3 times the amount of T3 that humans have and thus risks heart problems. As I have kidney disease I am already at a higher risk so have to rule that one out.

[helvella Administrator in reply to Trill]

Armour is porcine - not bovine.

The discussions and arguments about the T4:T3 ratio are not usually very fruitful.

Do remember that inadequate T3 definitely risks heart problems.

[Trill in reply to helvella]

Thanks for correction, and points made.

[Gingernut44 in reply to SlowDragon]

Do you think it's Thyro-gold? I believe that's grass fed beef thyroid or Thyrovanz

[SlowDragon Administrator in reply to Gingernut44]

Sorry No idea.

I use Levothyroxine plus T3 - prescribed by NHS

[Treepie]

I was getting bad night cramps whilst on chemo.Better You Sleep magnesium lotion worked for me.

[Chippysue]

Magnesium magnesium magnesium

ah yes magnesium

I take magnesium glycinate after doing some research. I also have regular epsom salt baths/foot baths

[Trill in reply to Chippysue]

Epsom salts are so good for you - and horticulture! Yet in Epsom where you would expect this to be exploited in specialist shops -- there are none! Everyone anyway takes magnesium, as I do, but it seems I need to research WHICH salt of Mg. Will do. Thanks all!

[humanbean]

There are several nutrients which reduce my risk of cramp and restless legs. I need to have good/optimal levels of

Iron

Magnesium

Vitamin D

Potassium

1) Iron is poisonous in overdose, so testing before supplementing is essential. Just getting iron and ferritin in range is not sufficient for many people, they have to be optimal. Once people start supplementing iron regular testing is essential then too. Depending on how well iron is absorbed, and how much iron is being taken it is a good idea to test every 4 - 8 weeks.

2) Magnesium supplements come in many forms. Do a search for "best and worst forms of magnesium supplement". Read a few links and try to get a consensus for what might work for you. People need reasonably healthy kidneys to be able to eliminate excess magnesium. Remember that people need enough magnesium to have healthy kidneys in the first place. Testing for magnesium is not trustworthy - only a fraction of the body's magnesium can be found in blood, and the body prioritises keeping magnesium in blood. So your blood level could be fine while your body's cells are deficient or very low. As a result most of us don't test magnesium, and just look out for overdose symptoms when we supplement.

3) Vitamin D - If this is allowed to get low then general muscle aches and joint pain tends to develop or get a lot worse than usual for the patient. Cramp is another possible result. Keeping vitamin D optimal is very helpful for both cramp and the thyroid.

4) Potassium - It isn't a good idea to supplement potassium because if the dose is too high then it can affect the heart rhythm. The best option is to eat a diet which includes potassium-rich foods. There are loads of lists of such foods on the web.

[Trill in reply to humanbean]

My Magnesium Maleate was not listed. The others didn't mention cramp. Thanks for all the info, though. Maybe I should up the dose but we are in the dark with supplements and without doctors, aren't we? I see spinach is rich in magnesium, but spinach is a food not considered wise to eat if you have kidney disease (although I love it). Guess it's hard to win.

[asmckay in reply to Trill]

Hi. I have replied to the excellent summary above, and am repeating parts of this in.case you don't see it. . For me, cramps are always linked to low magnesium, and I need to supplement with oral magnesium. I keep a spray by my bed in case of emergency - sometimes my usual 225 mg of elemental magnesium, from magnesium glycinate or citrate, is not enough and I need a top up. Sprays alone, or heaps of magnesium rich food are not enough for me. Our soils have become very low in magnesium, and I think it is almost impossible to get enough form food. I can't do it. Magnesium malate is the best form of magnesium for people with a delicate digestion. We need around 300mg/ elemental magnesium /day as women, 420mg for men. More if we are stressed or drink coffee. I take comfort from the fact that magnesium is water soluble and apparently very safe. There is a clip on YOUTUBE from York Cardiology in which the doc says that it is safe to take upto 5,000 mg / day. It is important to check the level of elemental magnesium in each form, and to avoid forms of magnesium that are poorly soluble, like magnesium oxide and hydroxide. Also to remember that we need Vitamin D3 and K2 to absorb magnesium.

[asmckay in reply to humanbean]

I wanted to add to this excellent summary. For me, cramps are always linked to low magnesium, and I need to supplement with oral magnesium. I keep a spray by my bed in case of emergency - sometimes my usual 225 mg of elemental magnesium, from magnesium glycinate or citrate, is not enough and I need a top up. Sprays alone, or heaps of magnesium rich food are not enough for me. Our soils have become very low in magnesium, and I think it is almost impossible to get enough form food. I can't do it.

[SmallBlueThing]

The effectiveness of Epsom salt baths appears to be a myth, at least for magnesium being absorbed. Maybe people swallow some?

My potassium has been low when tested, despite plenty of food sources.

I was troubled by leg cramps when I woke, but thankfully nattokinase seems to have stopped them.

[Trill]

This is not a reply to myself! It is a subsequent post.

More probing results. I had been taking 100mg a day of Magnesium Malate but I should never have done so because I have kidney disease. Furthermore, it's not even effective: see this scientific article: nps.org.au/news/magnesium-a...

Calf stretching seems the best treatment so plenty of 'lunges' and standing on tiptoe.

Furthermore, I have been put on statins, and the side effect can include cramps. My optician today advised me to get it changed to another brand.

As for T3, I can ask, but we no longer get to see our GPs face-to-face: it's only a phonecall and you can't overload them with requests.

Finally, I might have Peripheral Vascular Disease and that is something that I am going to ask to be tested for as CKD sufferers are at a higher risk of cardiovascular events and I have symptoms which may be explained by it, such as weak legs, tiredness walking , hot burning feet at night etc. So, am going to pick up that phone and book an appointment . . .

[SlowDragon Administrator in reply to Trill]

High cholesterol is most likely linked to being under treated and still hypothyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Peripheral neuropathy can be mix of inadequate Levothyroxine, low vitamin D and low B vitamins

Low vitamin D is EXTREMELY common when hypothyroid, especially if you have Hashimoto's

Common for peripheral neuropathy to get worse once start supplementing to improve low vitamin D. Adding a good quality daily vitamin B complex may help

Many of us have experienced this phenomenon as explained here by Dr Gominack

healthunlocked.com/thyroidu...

Would recommend getting FULL Thyroid and vitamin testing as first step

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

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).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

CKD may be linked to being hypothyroid and especially low FT3. If under medicated on Levothyroxine FT3 is likely to be low

boostthyroid.com/blog/2019/...

ncbi.nlm.nih.gov/pmc/articl...

Come back with new post once you get results and ranges

[SlowDragon Administrator in reply to Trill]

7 months ago FT4 only 50% through range and FT3 low

TSH right at top of what's acceptable for someone on Levothyroxine

healthunlocked.com/thyroidu...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

If GP refuses to consider dose increase in Levothyroxine request referral to endocrinologist of your choice

Email Dionne at Thyroid Uk for list of recommended thyroid specialists, including ones who will prescribe T3

But you may simply need an increase in dose of Levothyroxine

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

[asmckay in reply to Trill]

You have a lot to deal with, and of course you must be very cautious, given the kidney issue, in particular. I checked the "scientific article" that you refer to. It is a "meta-analysis" of just 7 trials, 3 of which were in pregnant women (whose cramp was helped my magnesium). Of the rest, at least two involved magnesium oxide, which is very poorly absorbed (4%, in the gut) . Magnesium oxide has very little effect on anything , except settling an upset tummy, because it is not absorbed.. I didn't check the underlying trials in detail, because it was clear than no conclusion can be drawn. There may be no evidence for magnesium helping cramp, but as far as I can see, there is no evidence that absorbable forms of magnesium do not work. It simply hasn't been tested. And why would anyone test? There is no money to be made here to justify the cost of testing. I do hope that you find a way through. I know how painful and disturbing cramp is and for me it was life changing to discover that magnesium had such a helpful muscle relaxing and sleep promoting effect. Good Luck