Hi, I have been ordering finger prick tests from UK for thyroid (as I am forced to buy OTC glandulars from internet), & as I was cutting down on Tiromel which is running out & unobtainable, I was surprised to note that I was doing well, at least on paper.
Then I saw that I could obtain the active B12 test, which came back at 139 - normal range 37.5 - 187.5. My Mum had pernicious anaemia. I had anaemia too.
Before I got the results back I have started experiencing worsening RLS again. I stopped the B12 for 2 weeks, but I was also taking 10 mg of biotin which I also stopped for 2 weeks before tests.
This will sound strange - but every time I fast from Biotin I get neuro problems & insomnia. I wondered if anyone else gets - I don't know - withdrawal effects? from stopping biotin before tests. I can hardly walk most days. I take individual vitamins as I had very low levels of everything, & the biotin skewed results of blood tests leaving me to fend for myself, that's why I take them. And why I stop them before tests. I think I could get away with a B complex now. I just want to see if others have experienced illness when skipping Biotin, & if there's a connection to RLS. Thanks!
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Jenny583
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Hi Jenny. I didn't realise that the NHS doesn't extend to Jersey. It's a shame you can't still get the Tiromel. I suspect the glandulars supplement isn't going to be as effective.
I wonder if it's not possible for you to get Levothyroxine from the UK.
AS you may know thyroid dysfunction can make RLS worse.
As regards the B12, since, as you say the normal range is 37.5 to 187.5 and yours is 139, it doesn't appear as if you have pernicious anaemia. B12 can help with RLS if you do have a deficiency, but it doesn't seem you have. So there may be little point to taking it.
You also say you had anaemia. Do you mean by this that you had iron deficiency anaemia. If so then this may be a part of your problem.
Blood tests for haemoglobin and serum ferritin would help. If your haemoglpobin is low, then you do have iron deficiency anaemia. However even if your haemoglobin is OK, if your ferritin is below 75ug/L then you may still have iron deficiency which is a major causative factor in RLS.
It is possible that you can raise your ferritin to at least 100 by taking an OTC oral iron supplement.
I don't know much about biotin but I do note it has an anti-inflammatory action. If this is the case then when you stop taking it then any inflammation you have may flare up and inflammation can make RLS worse. THe inflammation may be "sub-clinical" so you may not notice any symptoms.
There are many different things that can cause inflammation and it's different between individuals. Typical food elements include gluten, lactose, oxalates and carbohydrate. A general anti-inflammatory diet may help and so may foods rich in biotin.
Thanks Manerva, The T3 was the 1st 1 I got to try, Friend gave me some, & I (like many) noticed a huge improvement - at 1st. But my already low TSH became very suppressed & never recovered, while my serum FT3 & FT4 remained low, but then I realised that the biotin was probably skewing results - leaving me to wonder if actual thyroid levels were much more under range, & so I ended up taking high dose Metavive & then both Metavive & T3, as Endocrinologist would not allow me Levothyroxine because of my low TSH? But I didn't fast from Biotin for a week Before tests until recently, & then only with private tests. But I gain weight with every reduction in T3, & hair, nails, skin is worse & worse. I have put on 2.1/2 stone in very short time.Also, depression is very bad without the T3, I don't know why, + I have bad gerd & insomnia now, like in 2011-2013. I don't know if it's the Metavive or fillers, or the rotten food here now, that's why I had the active B12 test, as Mum had same symptoms. The RLS has improved now, but not the sleep, or gerd. I will write a log the next time I get the TFT as I will need to omit the biotin for 2 weeks. If I see a return of weakness & neuropathy during those fasts - then I'll suspect a need for high dose biotin. (I'm testing & reducing T3 every 7-8 weeks).
I didn't know Biotin is anti-inflammatory. I asked for tests from GP as suggested by this forum in 2018 including ana, ferritin, trab, & other things, but on printout I noticed ex GP had not requested them. I will look up anti-inflammatory diet too. If all else fails, IF I ever see the new GP again I will ask her for those tests. I had under range transferrin sats, but they came into range last March, & ferritin improved a lot too, thanks to iron & pate. Thank you Manerva, you are very helpful, wish you were my Dr!
I had assumed you have RLS, in which case I thought your insomnia was due to RLS.
I'm afraid I can only really write about RLS.
Neuropathy can exacerbate RLS, so if this worsens, then it may lead to insomnia.
In addition, assuming you take a medication for your GERD, then the usual medications can exacerbate RLS. They can interfere with the absorption of key nutrients e.g. iron and B12.
I may be possivbe that the insomnia is due to soemthing else, but I can't think what or if it's realted to the biotin.
I've always suffered insomnia irrespective of my RLS.
Yes, I had RLS, but it was exacerbated by inappropriate treatment for - hypothyroidism, insomnia, secondary hyperparathyroidism, in the form of - beta blockers, proton pump inhibitors, & then complications of these. The only treatment I was offered was Anti-depressants, which made the RLS worse, & PPI's which was probably 1 of the causes of my anaemia's. I have not touched GP's toxic drugs for 4-5 years, & like you have always suffered insomnia. AD's & PPI's do not cure or treat low stomach acid or hypo T, or RLS! so it's great that I can learn from HU & overseas finger testing.
You have helped a great deal, I was unsure of whether to conclude if the new pain & stiffness was from the osteoporosis or something else. Now I'm pretty sure it is squished nerves from my wedged spine. Back pain resolves, as does pain & rls. Thanks!
PPIs are prescribed for GERD as they lower stomach acid. The beta blocker may have been prescribed for insomnia, but they're not very effective for that. The AD may have been prescribed for insomnia or back pain/neuropathy.
So as you say none of them can treat hypo T and all 3 can make RLS worse.
I'm not sure if you're currently experiencing RLS or back pain, which, if so, may be promoting insomnia, but in 2018 I was prescribed gabapentin for nerve pain. I then discovered it can treat RLS and can help sleep.
It has been very effective for the last 19 months.
Sorry! yes medicine is complicated here. I concluded that the gerd was caused by the allergic reaction to the max dose ADs along with withdrawal effects when I was on lots of prescription drugs. I couldn't eat so was taking all those drugs on an empty stomach. The beta blockers were for very high BP & palpitations, which went to very low when I stopped the AD's. Each time GP tried different ADs I got severe reaction, & malnutrition.
I'm very pleased you find gabapentin helps. I just take antihistamines now, but I will probably get those from Amazon when I run out, which would be far cheaper than prescription. Magnesium oil helps a lot too, I rub that on at night.
I read that GABA was banned both in the UK in 2003 and in the USA and in many otther countries. I'm not sure if it's still banned.
In the UK GABA is not recognised as a drug and it's sale was prohibited by the national regulatory agency because it is thought to be "body changing". Whatever that means.
You can get it online. That doesn't mean it's safe.
I would be worried about taking it myself. RLS is associated with an excess of glutamate. IF anything can increase the amount of GABA then that would perhaps correct the imbalance between the two.
But then, not only would you have an excess of glutamate, you'd have an excess of GABA too.
Thanks Lizzo30, I take GABA, but You have reminded me that I may have missed one or two doses of GABA, maybe that's why I had a setback? Then again I was cutting & chopping & hauling large logs, I think the strain on my back may have caused the leg & foot pain. I forget that I have a wedged spine!
I won't forget the GABA again though,Thanks for the reminder! & my fingernails will thank me for the resumption of Biotin, whether or not it helps with anything else, it's important to take B vits in balance. RLS is resolving now, twitching & insomnia could be because I have yet to make some more magnesium oil. Must do that today.
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