Hi, I've recently been to my GP with problems of worsening restless leg pain, and pain in my legs on waking in the morning. I also suffer from migraines.
I was diagnosed with Hashimoto's in my early 30's, I'm now in my 50's.
They have been monitoring my thyroid quite a lot recently so I'll quote the last 3 tests (Apr, Jul, Oct):
Serum Vitamin B12 149 ng/L [145-914] This has steadily dropped from 452 since 2011
Serum Folate (B9) 13.8 ug/L [3-?] This has risen from 7.2 since 2011!
Serum Ferritin 31 ug/L
I have started to take steps to improve my B12.
My TSH has been bumping along the bottom of the range for many years except a couple of odd spikes. I've been on levothyroxine for many years. I was on 100mcg, but at my latest appointment, 10 days ago, my GP suggested that lowering my dose of levo might help with the RLS. I know it's early days, but so far it hasn't, my RLS has been worse since that appointment! I am talking to others on the RLS pages about causes for that but I've got a couple of thyroid-specific questions. I'm slightly confused about why my TSH is so low and the others high if I have an underactive thyroid. Can someone help me please?
I am on topirimate for migraines but they are phasing that out for 'women of childbearing age'. This is not really applicable for me. However, I wasn't happy with the control I was getting so I went along for the chat. They've put me on propanalol at a starting dose of 80mg/day as I've tried the other suitable options. I'm not sure if that is going to have an effect on my thyroid, on top of dropping my levothyroixne. - Can anyone help me with how that works with Hashimoto's?
Now I'm sitting here with the heating on, I've got 2 jumpers & a t shirt on! My feet are cold and a bit numb! (I get Raynauld's). Is that just due to dropping blood pressure? Or just Raynauld's? Or a thyroid issue? Is it possible to tell?
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I strongly suspect that once your rock bottom B12 & ferritin are raised to better levels then the RLS will improve a lot.
REynauds isnt a thyroid issue but no doubt when your vitamins are at better levels it may improve too.
TSH should always be at the lower end of the scale when well replaced. Its the way the pituitary calls for more hormone by raising TSH when theres not enough hormone.
The free hormone numbers are usually in the upper quarter of range when well replaced.
I eat some meat, but I am intolerant to dairy and gluten and a lot of other things so I'm not surprised I'm deficient. I've upped my fish intake the last couple of weeks and I'm taking the Wellwoman vegan supplement because I know that covers a lot of what I'm missing in my diet.
I've not been offered iron by the GP, there's a little iron in the supplement I'm taking (14mg)
The GP didn't say anything about B12 until I took in a chart showing it dropping to the level it's now at. Then they said they would repeat the test in Feb along with vit D and some other tests.
My White blood cell count is also low (as always) & my MCH is high (always).
It might be worth asking for an Intrinsic Factor test for the B12 deficiency, Pernicious Anermia can take many years to deplete your B12 stores, and seeing as yours has slowly declined over many years, it's worth putting your mind at rest. I think a lot of GPs do that by default when Hashimotos is diagnosed (as there's a reasonably strong link).
At least then you have a better idea how to treat the deficiency.
Being hypo, even treated does cause poor absorption of nutrients anyway.
Suggest you ask GP for a full iron panel just to be sure you have enough room for an iron supplement. Its possible to have too much iron nd not enough ferritin and vice versa. Post results when you get them and we can suggest a good supplement.
Now that you've started a B12 supplement that will scew your next B12 test. If you think your diet is low in B12 then a multivit isnt going to be enough to boost your level to where it needs to be.
Multivits arent recommended here due to a number of reasons including; too lower dose to raise level to optimal, including iron that will prevent you absorbing everything else, including iodine which isnt recommended for hypo's etc.
As you are so low you will need 2 B12 supplements at least initially.
Start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...
They found that 43% of the patients with low blood cells had evidence of thyroid disease. These included Grave’s disease, Hashimoto’s, multinodular goitre, and hypothyroidism.
Haha!! I've seen most of the GP's in that surgery over the time I've been living here! None of them have reacted to these blood tests and many of these results have been steadily high or steadily low for all of that time! I will be moving to another area soon (I hope) so a new GP surgery. I don't know if they will be any better. My current GP just seems at a loss to know what to do. She said last time something about not fitting neatly into boxes - who needs boxes anyway?
2) A week or so later add separate daily vitamin B complex
Igennus B complex popular option. And not too expensive
Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
3) Meanwhile get full iron panel test via GP or privately
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Do you normally take levothyroxine waking or bedtime
6) Brand Levo is important
Which brand levothyroxine are you taking
Do you always get same brand
As you are dairy free you need lactose free levothyroxine
Either Teva or Vencamil
Many members find Vencamil is the best option
6) They've put me on propanalol at a starting dose of 80mg/day as I've tried the other suitable options. I'm not sure if that is going to have an effect on my thyroid,
that’s a really really bad idea
GP must be clueless……propranolol is used to treat HYPERTHYROID patients
Low stores of body iron, as measured by serum ferritin levels and low serum iron saturation levels, correlate with low iron in the brain and the worsening of RLS symptoms.
RLS researchers recommend a serum ferritin measurement of 100 mcg/L or above to minimize the severity of RLS symptoms. If dietary sources of iron are insufficient to maintain iron stores in RLS patients, oral iron supplementation is the next step to help keep serum ferritin in the acceptable range. Oral iron is recommended when serum ferritin is less than 75 mcg/L, with the goal of raising serum ferritin levels to 100 mcg/L within three months of initiating therapy.
Other vitamins
B12 at least over 500
Folate towards top of range
Serum Vitamin B12 149 ng/L [145-914] This has steadily dropped from 452 since 2011
you really need testing for Pernicious Anaemia with such low B12
No vitamin D test result?
Aim for Vitamin D at least over 75nmol……and nearer 100nmol may be better
If GP won’t test or start B12 injections you need to start self supplementing
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Thank you SlowDragon. That's a lot of info. I've read through it once, I'll take some time to go through it more carefully later. I'm a bit worried about the cost though - funds are extremely tight!
Would you say that getting the vitamin/mineral levels up is more urgent than changing medications? My RLS has got worse so far with the changes that have been made to date (reducing levothyroxine, going on propanalol & starting an OTC vitamin supplement). I was wondering about getting the GP to change my mirtazapine to something different.
Hi, I too get RLS when my iron and B12 dip. And boy did they after I had a surgery. I'm slow-walking the iron because even though it's bisglycinate, it still constipates me. I can usually get my iron up fairly quick w/Thorne Iron Bis, but it's taking its time since I'm not taking it everyday.
In the meantime, I looked up Dr. Berg's recommendation for RLS, and I pretty much figured, take B-Complex loaded with B1, Thiamine. I take a B-Complex, so his advice was what I already learned from him years ago. And it def does help. So I started reading comments and one person said she suffered for years until someone online told her to simply stand up keeping legs straight then bend as if to touch your toes (only go as far as you can w/o hurting) Hold it a few seconds. Repeat 3 or 4 times. So I stood up, did this exercise, and I couldn't believe it, it worked. It was at night (when RLS kicks in for me) and I was amazed. Please give this a try. LMK. It has been a real blessing as I slow walk this iron!
Would you say that getting the vitamin/mineral levels up is more urgent than changing medications? My RLS has got worse so far with the changes that have been made to date (reducing levothyroxine, going on propanalol & starting an OTC vitamin supplement)
Propranolol will lower uptake and conversion of Ft4 (levothyroxine) to active hormone
Obviously lowering dose levothyroxine will have reduced Ft4 as well
Low Ft4 and low Ft3 will result in lower vitamin levels
So you need
1) Levo dose increased back up
2) how much propranolol are you taking and how long have you been taking it
You can NOT suddenly stop propranolol……have to reduce very slowly
3) equally essential is to get vitamin levels improved
I've seen the GP today and I'm stopping the propranolol. I've only been on it for a week, but I'll still taper it down. It was a trial. My normal GP has resisted trying me on propranolol, but I saw a different one last time and she said we needed to try it to get me a neuro referral. I have read your profile .. we share a quite a few things in common!
Hi! In case it helps, I used to experience ‘horrendous’ episodes of (especially nocturnal) RLS throughout my life. These episodes have diminished significantly now (since last 3-4 years).
I cannot authoritatively say why, but I suspect are linked with following changes: (i) taking progesterone (as HRT regime); (ii) closely managing blood glucose (as I was diagnosed prediabetic); (iii) reducing high-impact activities such as running; and (iv) reducing caffeine (now drink green tea/decaf coffee only in mornings).
My Endo was unfortunately no help in identifying root-cause (but I acknowledge this is difficult to do…). However, the subsidence of RLS symptoms did seem to coincide with start of, and subsequent optimisation of HRT (bioidentical) hormone treatment.
Regarding your B12 are these tests done through your GP thus was typical of my mum scenario we saw problems and had to tell them as “overlooked” … not good enough really when have ongoing symptoms!
You have a definite case for them to start supplementing with injections unless they have given you good reasons not to.
Just give you a scenario re my mum - in her 80s as age can be a factor and an acquaintance in 50s as they both got B12 injections eventually from their GP.
Given my family and extended maternal family have including myself struggle to maintain good levels of B12, regardless of diet, and I actually knew of an acquaintance who tracked her B12 and because it was going down, but she was taking antacids, as they amongst a few medications and metformin comes to mind, can cause reduction in these levels, so it’s worth checking other medications aren’t playing a part of this. After many months of monitoring both my mum and this acquaintance I knew was put on injections.
I have heard possibly due to covid and many with now long covid and chronic fatigue NHS was or were in some circumstances, going to be moving these ranges as many are now falling into the category of needing supplementation, and now another area to watch, where it’s getting harder to get what we require by moving goal posts… I will add I don’t know if this has been implemented, but like antihistamine and vitamin D3 we have often have to buy over counter now to maintain…but in the case of B12 and over the counter supplements they can possibly maintain good levels but for those of us with other digestive, genetic or have other health conditions or possibly regular medication depleting them, they aren’t any good. Often it requires a loading doses over few weeks and then 12wk maintenance… this timescale on maintenance is dependent on severity.
Re testing Intrinsic factor it’s an odd one, as even though mines negative, I still have pernicious anaemia, and it’s reported a negative result doesn’t correlate to not having pernicious anaemia, weirdly… I haven’t bothered to read further on this matter.
My levels are very good but if I miss 3 months injections my levels are definitely borderline very quickly.
I’d be inclined not to supplement this area to get a true picture from your GP in your next test as this will give false information if supplementing… but you’re best to ask your GP on this guidance before doing anything and make GP aware if you are supplementing that this isn’t going to be true reading.
You tried it and it did not work. So if you felt overall your own normal I don’t see why you should not go back to your regular dose . Your free values were not that high at all and sometimes the ‘almighty’ TSH (a pituitary hormone, not a thyroid hormone as such) does fail. I was treated on the basis that my TSH of 0.19 was too low - only to discover that my normal TSH in the past was lower than that for many years. Now I have gained 1/3 of my own body weight after this ‘treatment but guess what - the thyroid is not to blame👺. Thank you Doctor. What a waste of my life.
I've found GP's useless for migraines, they can only offer 3 treatments for migraine prevention, Propranolol, Amytriptyline/ Nortriptyline and Topirimate. And that's it, anything else and there are loads of options, has to be prescribed by a Neurologist or headache specialist. Propranolol isnt great for Hypos, it will affect your FT4 to FT3 conversion. They use it for those who are hyperthyroid, to reduce thyroid levels.
The new CGRP injectables, Botox etc are very effective but need to be initiated by a specialist. I would ask for a referral if I were you.
Hi, I've just put a post on a migraine board asking what a Neuro can offer, because I know that's what the next step is. My RLS has got a lot worse since going on the propanolol and with my feet going numb and bad insomnia I think I've got enough to say this isn't working for me! But I have very low motility and I understand that CGRP's can make that worse (am I right?). Do you know if any of the other Neuro options are OK for people with RLS? I'm really not sure about Botox. Last time I had acupuncture I had a seizure.
I have vestibular migraines which started off as regular ones. I get balance issues, dizziness primarily. I've tried about 7 different meds from different classes. If Propranolol doesnt suit and as a hypo its not advised, I'd probably also avoid other beta blockers or blood pressure meds. I tried Candestarten which made my BP too low.
Have you looked at low dose antidepressants like Amytriptyline or Venlafaxine. They are used at much lower doses than for depression and can be extremely effective. I have Ehlers Danlos so am very medication sensitive but I tolerated Venlafaxine well.
Also have you looked at the migraine diet, cutting out the 6 C's, Chinese food, caffeine, chocolate, cheese, citrus and Chianti ( alcohol). Plus taking 400mg of vitamin B2 daily and magnesium can help control the frequency of migraine.
I tried Amitriptyline but it also made my restless legs intolerable very quickly.
I wonder if I have Ehlers Danlos but my previous GP years ago said it wouldn't make any difference to how I was treated so he wouldn't refer me. I keep putting joints out in my feet & ankles just walking along so it's a pain! But I am also very medication sensitive.
Yes I pretty much don't eat any of those things. I have started taking a supplement, but I've got the wrong thing so I'm looking at some different vitamins. Thanks for the hints that will help when I choose them.
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