Hi! I'm after some support and recommendations please.
I started running as my BP has gone into high range. Unfortunately, shortly after, I started to get RLS at night. I don’t know if exercise and RLS are linked, but I need to continue to exercise, to help manage my high BP and Hba1c. Unfortunately, the RLS makes me want to give up.
I was recommended to this site for some help managing this condition.
I’ve tried all the home remedies, including pickle juice, nothing so far has made lasting improvement, although for a while creatine seemed to help. Unfortunately the RLS came back.
I’ve read here that ferritin levels above 100 can improve the condition. Can some of you who know more about this interpret my last blood test results and offer suggestions. How can I increase my levels?
My last Serum Ferritin level was 61 (13.0 - 150)
Transferrin saturation
Serum iron level 25 umol/L [11.0 - 25.0]
Serum unsaturated iron binding capacity 38 umol/L [24.0 - 70.0]
Serum TIBC 63 umol/l [44.0 - 71.0]
TF Saturation 40 [20.0 - 50.0]
Serum transferrin level 3.1 g/L [2.0 - 3.2]
My father and sister had/ have haemochromatosis, so I’m a bit reluctant to take iron tablets and some years ago, after taking iron tablets, my GP said to stop as my iron levels were too high.
I will also add that I’m on 100mcg of levothyroxine for underactive thyroid, and I’ve found that 1mg of T3 p/day has eradicated the RLS. Unfortunately this will now cause problems with my GP regarding management of my thyroid condition. They, like most GPs, are opposed to the use of T3. Told me, T4 is the active hormone and T3 the inactive… this is the level of knowledge I’m dealing with at my PCT
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SummerDark
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Welcome to the forum. You will find lots of help, support and understanding here.
RLS is definitely associated with hypothyroidism so taking your levothyroxine will definitely help bring your RLS under control.
If not, above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
You probably won't need much and after your thyroid problems are under control you can reduce or come off the medicine by reducing very slowly to avoid withdrawal effects.
On the exercise extreme exercise makes RLS worse while moderate exercise makes RLS better.
Are you taking any medicines for your BP? Many make RLS worse. If you tell me what you are taking I can provide substitutes that are safe for RLS.
On the iron. 40 is below 45 which is the point where iron is not advised although you will need to monitor your TSAT.
Take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Since you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
My thyroid medication is about right and my thyroid symptoms have been well managed for many years.
I take no other medication. I self medicate with vitamin D, magnesium, calcium and once a week I take vitamin B. Other than this, and my RLS/ insomnia I'm really well. Of course my Hba1c, BP and LDL levels could be better, but they're not really high, and my GP hasn't suggested any medication for these.
I'm hoping that exercise will help. I've altered my exercise to using a stepper 3x a week, as this is less intensive than jogging and I'm hoping that this will help.
I studied nutrition and have always had a really good diet. I eat wholefoods and avoid sugar and sodium. I rarely drink alcohol and don't smoke.
I have a massage gun. I'll try this first. Thank you again for all of this information. If I have to ask my GP, I'll know what to ask for and what to avoid. This is very helpful.
When Sue said “On the iron. 40 is below 40 which is the point where iron is not advised although you will need to monitor your TSAT.” I think she meant “On the iron. 40 is below *45* which is the point where iron is not advised although you will need to monitor your TSAT.” Regarding exercise many people find exercising in the morning is slightly better for sleep that night. I find exercise often makes RLS worse and try to manage it by having days off to rest, not exercising at maximum intensity and doing it regularly so my muscles get used to a certain level of intensity and are not so affected.
Thank you for clarifying this. Sue provided so much information, I'd missed this. It's going to take several reads before I can digest it all. So useful. I'll do my exercise in the morning, have rest days and try this. Thank you.
Have you had genetic testing for HH? if negative then you are very unlikely to get HH. If have 2 genes for HH you might, but not 100%. There are lots of 'minor' issues with HH but liver failure is the big one. Unlikely with ferritin below 1000. The converse is for people with HH they like keeping the ferritin saturation below 40% maybe even 20%. But that is about managing a possible future problem vs a real problem today.
Yes indeed there is testing for HH - without it looming - supplements can help with RLS. As for exercise when my RLS was the worst - I needed to back off in intensity - really low heart rate increases. Higher intensities totally increased RLS. BTW, iron eliminated my severe RLS.
Thank you. I've been managing my pre-diabetes since 2019 by losing two stone and brought it down to just below pre-diabetes. Exercise is definitely what I needed to do more of to help maintain this. Unfortunately most of my family become T2 into our 60's irrespective of weight, eventually.
The reason that T2 tends to run in families is because of learned diet and lifestyle. The type of exersise that's best is muscle building exersise. youtu.be/trY8rlUYGY8?si=Leh...
And genetics and ageing and developing other chronic conditions, so for me, no, not just "learned diet and lifestyle". Bodies will change as we age and become less able to regulate as when younger, even those of us who've lived a really healthy lifestyle, and from families who've lived a healthy lifestyle.
I studied nutrition and was a dancer/dance teacher. I'm 5'10 and weighed 10 stone throughout my adult life. I lived an active lifestyle and exercised every day since my teens. The only exception was when I became ill with an undiagnosed underactive thyroid condition in my mid-50's.
Having been diagnosed and on adequate thyroid replacement medication, I again run and weight train. I eat well, and have followed a plant based, whole-food, pescatarian diet since my teens.
My diet and lifestyle did not cause my thyroid issues, which led to weight gain and insulin resistance in my 60's. It's impossible to exercise consistently with undiagnosed/ undertreated thyroid problems. And recovery can take time, especially since the thyroid dose needs to be balanced correctly, and thyroid needs aren't always consistent. If you haven't ever had an undiagnosed underactive thyroid, it may be hard to understand.
Shortly after my hypothyroid diagnosis a friend asked once if I was angry that as someone who had lived such a healthy lifestyle had become so unwell. I have resented the awful changes which underactive thyroid caused to my body and my lifestyle, including my inability to exercise. I had to give up my dancing and teaching. There were times I could barely walk. None of my clothes fitted and my slim figure became bloated. I hated the way I looked.
It's taken over ten years, but I'm now very healthy again, except for this recent bout of RLS. Fingers crossed, but for the past week, it seems to have stopped... I've stopped taking antihistamines, so following on from some of the earlier comments on here, perhaps this is the culprit?
Sorry, I missed the mention of thyroid issues in your post I there any information in this very comprehensive video which might help? youtu.be/Z4Ug2ONxgYw?si=qQk...
He doesn't mention RLS and ferritin test results so it's not relevant.
I know you're trying to be helpful and supportive and thank you for this. However my question was about feedback on my ferritin results with regard to my recent bout of RLS.
The rest was background information, so that those with knowledge of RLS and these results could offer feedback and understand that there were other health issues in play.
With respect, I did not ask for advice about my pre-diabetes (I've been able to bring this into normal without meds since 2020).
I did not ask for advice on nutrition or exercise or my thyroid condition, which has been well managed since 2019 when I took my GPs to task and insisted I be allowed to follow my symptoms.
I wanted some help with the latest curveball - a bout of RLS and the link to ferritin tests.
Thank you for trying to help, but please appreciate, I'm very knowledgeable on being able to manage my diet, exercise, prediabetes and thyroid condition
But it could be relevant as one of the treatments of thyriod problems is a low carb diet and the consumption of large ammounts of carbs or a leaky gut which speeds up the absorption of carbs, is also the main cause of the inflammation which gives rise to RLS as well as affecting the thyroid so if you follow the dietary advice you could address both problems.
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Serum Ferritin levels
Blood test iron results
iron panel - almost normal?
New to this but think I may have rls, can anyone help?
Iron studies blood test results
