So I'm fairly new to this, but just wanted to ask a question about your experiences...
I've started to notice a pattern - if I don't get enough sleep, I will be a bit drowsy and a bit grumpy but I have energy to do things, and won't necessarily feel as exhausted as I would expect to; whereas sometimes if I get a full nights sleep (or worse, a daytime nap) I am a ruinous mess, achy and weak and shattered. Does anyone else get this, is it 'normal' (which I recognise is a very ambiguous term to use here)?
For context, I was diagnosed hypo in February (no comfirmation of cause yet) and am still adjusting to the levo - I have a blood test this week and am determined and hopeful that (as long as the results agree) I should increase from 100mcg to 125, as in general I am still bloody exhausted all the time. I am working on my diet and nutrients and intend to see a nutritionist in the near future. Will post the results in a new thread when they come in, to ask the wonderful HU hive mind what they mean
Thankings to all xxx
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malohant
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You're experiencing tired but wired followed by a kind of energy crash (exhausted with unrefreshing sleep) then back to tired but wired again. If they hadn't already (thankfully) discovered that you're hypo, you'd probably have been diagnosed with CFS.
It's difficult to get a handle on regulating this pattern as you'll use up lots of energy (more than you actually have available) when you're 'wired' and then pay for it afterwards. I think there is a definite subset of Hashimoto's sufferers that get these problems. It's vital that you're converting your Levo well to t3, as t3 helps get everything under control.
If symptoms persist after the dose increase it'll probably be worth asking the question of having your adrenals assessed (as well as blood tests for the 'fab four' vitamin D, Ferritin, folate and b12). There is a faint possibility your adrenal problems are autoimmune.
Look at Dr Sarah Myhill's website for lots of help on CFS symptoms and adrenal issues with low thyroid. I suspect you'd benefit from a mixture of supplements similar to the ones I take that support the thyroid for conversion as well as adrenals. These include lots of Vitamin C, Magnesium, Zinc, Selenium and B vitamins - especially B2, B3, B5(not specifically good for the thyroid, but a good stress-reliever) and B6 (as p5p) in addition to the fab four for thyroid (which get tested).
P.S. For a complete energy crash, follow Dr Myhill's advice.... Take electrolytes with vitamin C and some D-ribose. I sometimes feel a bit 'wonky' after a hearty dog walk or a long session in the garden and this combination really helps.
Really useful to understand what's happening a little better. I had a quick look at your links but not sure I can take it in right now so will return to them later.
I have tested the 'fab four' and a full iron panel about a month ago (done privately), posted results here:
Low Vit D, B12, and ferritin - have started supplementing Vit D (with K2), wanted to introduce things in stages to see if anything had a particular effect, also as mentioned I have GP blood tests this week so wanted to get a baseline test in case my GP will prescribe any of these supplements (she said NHS won't test for vit D but its assumed everyone is deficient, so figured it was best to start with that). Haven't had adrenals tested yet though, might be worth looking into as a next step.
And thanks for the 'post-crash' tip - will definitely look into that! I have been finding that a banana or (weirdly) some mackerel will pick me up a little if its not too big a crash, good to have more things to add to combat it x
Mackerel and Banana contain Magnesium and other essential salts. You definitely don't want a low salt diet when your adrenals are low.
Magnesium is essential for assisting vitamin D synthesis and helps with restful sleep, so look into getting hold of some that suits your needs.
I've tried Chloride, Citrate, Glycinate, Malate and Taurate forms of Magnesium and Epsom Salts in the bath. The first two are soluble; Chloride is the kind that can also be absorbed by the skin. Taurate is good for the heart and the liver and promotes GABA (helps sleep). Malate is good for fibromyalgia symptoms. Read The Magnesium Miracle by Dr Carolyn Dean for lots of information on Magnesium benefits.
Yes, I've noticed similar changes in energy from day to day and the will to do things is so haphazard it makes planning really hard. I'm couple of years into hypo diagnosis and then Hashimotos last year after private full panel. Good to read your description as it helped clarify my own pattern and had given me the push to keep looking for ways forward. Changing my diet has helped greatly in last year but chronic low energy is still the biggest disruptor to my daily life. My TSH is very low now at 0.75 and I'm on 100mcg. Hope you have found some change you want since your message was first posted.
In addition to the info in the above link, many people feel best when ferritin is mid-range or a little bit over.
So, your transferrin saturation and serum iron are already optimal, and your TIBC is mid-range. They don't need to change.
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The obvious issue you have is that your ferritin is much too low. The difficulty comes in improving your ferritin without upsetting your other iron-related results, and that can be very, very difficult. For some context on this issue please read this thread including all the replies :
The only things I can suggest you do are that you increase your intake of iron via food and retest in, say, 2 - 4 months. In addition you could take a vitamin C supplement every day with whichever meal you eat each day that contains the most iron. I'm not making any promises that either of these things will raise your ferritin. They might just raise your serum iron. You'll just have to experiment, but don't leave it too long to retest because it could backfire on you, as I mentioned in that thread I linked above.
For info on improving iron with food see this website :
If you try improving iron with food and it doesn't work, and if you are absolutely desperate to try increasing your ferritin, then you could try an iron supplement. But if you did that I would suggest doing a test after one month then after another month to see what is happening to your iron and ferritin and other related results.
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If you follow any of these suggestions you do so at your own risk. I have no medical training of any kind.
Thank you humanbean , that is one mystery I now know a little more about! I have been trying to eat more iron-rich foods (although I'm not a fan of liver! But pate I'm ok with) and more with vitamin C. I was wondering about getting tested for MTHFR variation, but am unclear as to whether there's anything that can be done about it - or is it just to know the cause? (Although my folate has always tested in range).
I don't know much about MTHFR or testing for MTHFR, although obviously I know it can be done, and that lots of people have done it. I wouldn't be able to interpret the results you got either.
What I have read is that some people have good genes that give no MTHFR problems but about 50% of the people on the planet have less than ideal MTHFR genes. Since the number of people in the "less than ideal" category is so huge it suggests to me that there is more to these genes than has so far been discovered. Genes which are inimical to life tend not to survive and gradually disappear from the gene pool. Since MTHFR issues are still with us in spades it suggests there is more to them than is known (or that I know).
The Methylation Cycle is hugely important for all sorts of processes in the body. Nutrients are taken in in one form and in order to make use of them the body has to convert them into another form. The Methylation Cycle can grind to a halt, but it can be started again with supplements.
In a healthy body folic acid will be converted into folate, but someone with an MTHFR problem can't do it, or it is done very inefficiently. Your blood results for folate might end up looking fab, but you won't be getting any benefit from it. What you need instead is methylfolate or 5-methyltetrahydrofolate which is easily obtained from supplement sites on the web and shopping sites like Amazon. Since you are deficient you will need quite a high dose for a while. Try 800mcg - 1000mcg per day and see if you start to feel better.
Vitamin B12 supplements are often sold in the form cyanocobalamin. In order to make use of it you need the type which is already converted into the active form - methylcobalamin. There is another active form available called adenosylcobalamin, but stick with the methylcobalamin to begin with, and take a dose of 1000mcg per day. You can try adenosylcobalamin later if you want to.
Please start the B12 (methylcobalamin) a couple of days before you start the methylfolate.
You should test your folate and active and/or serum B12 in a couple of months. You should be aiming to get your folate into the upper half of the reference range, your serum B12 close to the top of the range or even a little bit over, and your Active B12 over 100 pmol/L.
For more info on methylation, and a different protocol on how to fix the issue (which is far more complicated and expensive than the B12 and folate I've suggested), read this :
Please note that I am not medically trained, and everything I've written is based on my reading and research on the web. You pay attention to it and/or follow my suggestions at your own risk.
Thank you humanbean . I am so thankful for the advice you and others give on this forum, I dread to think where I'd be without it. I do completely appreciate that you are only sharing your (considerably well-informed, if untrained) opinion.
Can I check - even though my folate tests have all come back in the middle third of the range (1 test in July: 26.3 (8.83-60.8), and one in Sept: 14.0 (3.9-20.0)) I am possibly still deficient in it?
Also, I currently take a B complex from Holland & Barrett, I just checked and it has cyanocobalamin, and no folate/b9 (which I didn't think was an issue as my folate tested ok). Obviously I'll be looking for a better B complex, such as those others have suggested on HU, but are you suggesting that I take B12 and folate in addition to a complex or instead of?
1 test in July: 26.3 (8.83-60.8) 33.6% thru the range
one in Sept: 14.0 (3.9-20.0) 63% thru the range
Your folate was below optimal in the first test, but pretty good in the second test. I don't know where I got the idea you were low in folate.
What I don't know is how much of your results for folate are actually for folic acid. I've never managed to find out what the folate test is actually measuring - is it folic acid or folate or the total of both? I should probably email a couple of testing companies and ask, if I ever remember.
You could delay buying methyl-B12 and methylfolate and buy a good quality B Complex instead.
The ones usually mentioned on here are :
Thorne Research Basic B - normal dose is 1 per day
Igennus Super B - normal dose is 2 per day
I would suggest taking the whole normal dose of whichever product you buy for a couple of months, then do a test for B12 and Folate. Make sure to come off the B Complex for a week before testing because Biotin (found in B Complex) can screw with test results in some cases.
If you are happy with the results of the tests then you could save some money by taking Igennus Super B, but just take 1 per day.
Replying to your comment about GP not testing for vitamin d - they do mine regularly!!!
I was very deficient a few years ago and was put on the giant doses to bring it up, since when I'm on a prescribed supplement - I'm low end of normal range while taking that, but as a fair skinned sun avoider and shielding - its taken a battering again!!
Methylation issues are really interesting. It kind of explains the flipping from tired but wired to full on fatigue. As well as getting the right kind of b12 and folate I found that getting the right kind of b6 is also crucial. This, and Magnesium seem to buffer the effects of b12 and folate which are pretty stimulating. If you buy the Igennus B complex this already contains p5p which is the best b6. I found I needed a bit more. So, Biocare do this as well as methylfolate with methylcobalamin drops (methyl guard). Igennus do a 'Neurobalance' complex of p5p, magnesium and zinc which is great for balancing mood.
Thanks HLAB35! I switched to igennus B complex yesterday, but yesterday pm and today have been feeling pretty awful. It's probably unrelated but its the only significant thing I've changed. I take magnesium malate powder in a fruit/veg/seeds smoothie (although coarsie would be a better name, I can never get the carrots to fully blend to smooth haha) either in the morning or at lunch - I understand malate is best for energy. My last thyoid/nutrient tests were at the start of September so I'm doing the thyroid ones in a couple of weeks, but will leave nutrients a bit longer (especially having just switched B complex).
Malic acid - the Malate part of Magnesium Malate is good for energy and Fibromyalgia symptoms. Not sure how much actual absorbable Magnesium is in it compared to Citrate or Glycinate, say. The latter is probably the best non-soluble form, but I found soluble Citrate worked better for me. You need more Magnesium if you're taking methylated B's because they are quite stimulating. It's about slowly getting into the higher gears when your metabolism improves and trying to avoid nasty jolts. It's a good idea to start on one tablet rather than the two tablets at first (many continue on just the one and, in my case, take extra p5p which is actually what I was craving).
Thank you! Yes I have started on one (more due to misreading the bottle than actual planning!) I'll look into how effectively Magnesium Malate is absorbed, thank you for saying. Can I ask, how did you know/find out it was p5p you needed more of?
I did and am still doing a massive amount of research for myself and my family. There are lots of articles about how p5p is extremely useful as a mood leveller, blood sugar regulator and cofactor in manufacturing serotonin, melatonin, acetylcholine etc. I had pre diabetes and no longer have this. The things I increased were p5p and Magnesium!
Looking for research on the bioavailability of Malate, there's an interesting study here: link.springer.com/article/1...
Albeit testing on rats, it seems to show Malate is fairly absorbable? (Although of course this is only one study, and not on humans). And indeed if I don't find stability again once I get used to the Igennus B complex then I may try others... Whatever works, right?
Absolutely! Prior to lunch and late afternoon as well as bedtime - spacing it out seems the most effective way to improve absorption, if you can practically manage it. That's why the soluble sort is handy in a water bottle you can make in advance.
N.B. Dr Carolyn Dean has written loads on Magnesium.
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