Hello everyone, this is my first post, though I’ve been gleaning pearls of wisdom from this site for a couple of years, so thank you all!
I’m a 60-year-old male. I’ve had chronic fatigue since 1988; tight forehead pain and a horrible “saturated brain” feeling since the late 1990s (brought on by reading; I get c.30 minutes of concentration on a good day and 5 seconds on a bad day); poor body temperature control since 2000; fasciculation (involuntary muscle jerking) since 2001; and MacTel Type 1 in my right eye (loss of central vision) since 2019.
Over 20 years ago, I suspected an under-active thyroid, but my frequent blood tests, both NHS and private, showed either normal TSH (1-something) or borderline hypo (2.5-ish). However, all my tests were mid-morning, after breakfast with a B-Complex supplement, and coffee. I didn’t know any better in those days!
In 2004-5, I had hydrocortisone for weak adrenals from a private doctor, which gave me more energy, but he couldn’t continue prescribing that without getting himself into trouble, so it stopped. Also, I tried Armour Thyroid, but that gave me a roller-coaster of a superb day followed by a hyper day followed by a crash, so I gave up the idea of an under-active thyroid.
On 20th February this year, I saw a neuro-muscular specialist about my fasciculation, which is sometimes severe enough to keep me awake at night. To my surprise, he authorized blood tests there and then. I had had coffee first thing that morning, followed by a cereal breakfast fortified with B-vitamins, then another coffee at c.11.30am, then prawn sandwiches for lunch. I had also been taking 400mg ibuprofen morning and evening for the previous week or so to counter inflammation from a slipped disc – all of which might swayed the results. Here they are (blood taken at 2.43pm):
Gamma GT: 122 IU/L (10-71)
TSH: 5.37 mIU/L (0.27-4.20)
FT4: 13.8 pmol/L (11.9-21.6)
(FT3 not measured)
Vit. B12: 301 pg/mL (197-771)
Folate: 3.7 ng/mL (2.9-26.8)
Ferritin: 120 ug/L (30-400)
25-hydroxy Vit. D: 163 nmol/L (25-120)
(I’ve been taking 8,000 IU Vit. D drops every morning for a couple of years, with 80ug Vit. K2 MK-7 and 444mg magnesium citrate every evening, so the high Vit. D is not surprising)
I don’t know what the high Gamma GT result might mean, but to me, a raised TSH with low FT4, folate and B12 suggest hypothyroidism. Any thoughts on this would be much appreciated. Thank you.
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KingJohnVII
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Also, I tried Armour Thyroid, but that gave me a roller-coaster of a superb day followed by a hyper day followed by a crash. I suspect if you had adjusted your dose you might have found an optimum point, or, you might have been better on a combination of levo/lio.
Are you now on some levothyroxine or is the dr 'waiting' to see if it was a blip (despite your history)?
Thanks for your reply. I'm sure you're right; my treatment regime 20 years ago should have been fine-tuned under specialist care. No, I'm not on any meds yet, still waiting for the specialist's report. I may go straight to my GP with the results and ask for a trial of low-dose thyroxine. With a TSH above the "normal" range, I don't see how he could object...
Asking for a low dose of levothyroxine might not work well.
Getting prescribed too low a dose can make you worse off!
The effect of a low dose on your own production of thyroid hormone can end up being greater than the contribution of that dose to your total thyroid hormone.
Your folate and B12 being quite low is not good. Not clear - are you still supplementing?
That's a thought. What dose would you suggest as a starter? My only supplements at present are Vit. D, Vit. K, Magnesium & Krill Oil. Do you know if GPs will prescribe methylcobalamin and methylfolate?
The standard low starting dose - unless contraindicated - is 50 micrograms. If all goes well, you could imagine starting on 50, then getting retested after around six weeks with an expectation of getting an increase - maybe to 75. Then repeat.
However, it might be better to increase to 62.5 for a while even if prescribed 75. Splitting tablets is feasible.
Not a hope of getting methylcobalamin and methylfolate prescribed. Neither is available in a UK licensed form, for a start. Doctors cannot even prescribe any folic acid under 5 milligrams - which is a high dose and unlikely to be needed or appropriate.
Thanks, really appreciate this advice. The problems have gone on for so long now that, if I’m honest, I feel I’m only just hanging on. But every little piece of advice helps! Thanks again.
I have that saturated brain feeling! That is such a good way of describing it! It is horrendous. My brain feels permanently fried. Its one of several reasons why I can't work.
Your low B12 could also be causing those symptoms. Strong correlation between Pernicious anemia/B12 deficiency and muscle fasciculation, as well as fatigue. Have you ever looked into this?
That’s interesting. I had B12 injections every week for several months back in 2010/11, thanks to my very obliging GP. They made barely any difference to my energy levels, but I didn’t have any fasciculation either.
I haven't tried using it - but the email only arrived late yesterday. No idea if that means it is brand new and might not be working yet - or was late and has exported.
Also, I missed this, it is possible it doesn't apply to all thyroid tests:
I can't speak for the hypo situation as I am also sublcinical and unofficially disgnosed but regarding fasciculation: My friend and I both suffered from muscle twitching. Mine caused by keto diet or excess sulphur via alpha lipoic acid and made worse by high salt diet and/or adding magnesium. Yes magnesium made it worse. It improved for me by not being keto, but I needed also to increase taurine and molybdenum to normalise. For my friend it was just taurine.
It wasn't til later I made the connection with molybdenum - since it helps with sulfite toxicity. Taurine likely balanced out the citric cycle. Taurine also helps t4 to t3 conversion and helps carry magnesium into the cells.
I’ve had this for years and doctor is clueless to be honest.I saw a neurologist a few years back and he said nothing to worry about and sent me on my way.Can be really frustrating on times.
I'm sure you are right but it'd take a very odd diet to not get magnesium at all. Maybe supplementing additional magnesium helps vitamin d, but magnesium isn't the most abundant mineral in the human body. Calcium is the most abundant. My personal hair test showed my calcium level was above range for years and only when I started going against the advice on the test to take vitamin d did my calcium levels normalise. So I think now its wise to experiment and monitor ones own mineral balance. I take extra magnesium more to help with constipation, but when I take more than 600mg a day consistently over a few days then muscle twitches come on. You maybe different and need a different amount.
I'm not trying to discourage you from changing your routine. That's a small amount of magnesium and the vitamin d seems good too. I'm just saying more than 600mg magnesium was too much for me. You are already taking much less than this.
If you are going to do anything new - try 1g of taurine a day for a few days and see how you react to it.
There had to had a balance between calcium and magnesium and I just wonder if too much magnesium upsets it and low calcium relative to magnesium level is the cause.
I suspect it has more to do with dehydration. Magnesium can act as laxative and pull water to the digestive tract improving transit time but at the sacrifice of pulling water from other places - ie the muscles.
By the way - I found a great website that explains causes of muscle twitching - suzy cohen. I don't think I'm allowed to include the site on here but if you research the above you can find her suggestions about connection with Hyperhomocysteinemia and various other causes
Thanks Steve. Suzy Cohen is a great source of info. I’ve long known that high homocysteine is a better indicator of heart health than cholesterol, but never had mine measured. On 20th February, my calcium was 2.52 nmol/L (2,20-2.60).
I'm confused too. When I started taking magnesium my cramp, restless legs, and fasciculations almost disappeared completely. It's only when I slack off taking it that it comes back.
I've also found that the following helps :
vitamin D helps - but yours is already high, so you don't need more.
Don't restrict your salt intake - low sodium can cause cramp, restless legs, etc.
Potassium (I take potassium bicarbonate, but there are other options) : If this gets low it can also cause cramp etc. Worth reading, including the comments :
Iron : Low iron - your ferritin isn't too bad, but could be a bit better. It is important when supplementing iron to make sure serum iron and transferrin saturation don't get too high. Getting an iron panel done regularly while supplementing iron is the best way of monitoring it.
It is possible to have high or low levels of serum iron, ferritin, transferrin saturation in almost any combination, and different combos can tell you different things about your health.
hi King John the first thing I would do is try a diet that excludes all processed food and gluten. It’s a big commitment. Cereal for brekkie and prawn sandwiches for lunch (delicious as they are) would have to go but eating an array of fresh veg and good quality protein will make you feel a lot better. So instead of prawn sandwiches it would be prawns with avocado, tomatoes, carrots and rocket etc.
It’s quite a commitment changing diet and you need to read up and find one that you can commit to. Sarah Mayhill has some good tips on her website though the website itself is a bit hard to fathom. You might enjoy doing the Zoe diet and get your blood sugars monitored for a few weeks.
If you do have Hashimotos then you’re probably not getting what you need from your diet at the moment. Some folks here also swear by dairy free too though I think one step at a time. Try it for a couple of months and see how you feel. You probably need some levothyroxine but unfortunately taking that alone isn’t going to be enough to make you feel optimal. It’s just one piece in the jigsaw. 🧩 😊
Thanks for your comments. I’ve tried wheat-free, dairy-free, sugar-free and caffeine-free diets in the past, none of which achieved anything positive. Perhaps l’ll give gluten-free a go now. My daughter is gluten-free, and it’s certainly helping her recovery from Graves.
It's actually a good idea to wait and be tested for celiacs before going gluten free. If you ever need a confirmation, and HAVE to be tested after going gluten free, you HAVE to add gluten back into your diet and it's a really miserable process. It's called the gluten challenge and will be required for an accurate test. You may want a formal diagnosis someday. Ask your Dr first. If he won't, then you can consider gluten free. Common deficiencies can also affect your thyroid and/or T4 to T3 ... Vit D, zinc, iron/ferritin. I saw that you are taking Vit K2 with your D3... It does help direct calcium to your bones and teeth and, potentially, preventing calcification of your arteries.
Just a thought - you say your daughter has Graves - well - this is an Auto Immune disease for which there is no cure and generally there is a genetic predisposition with Graves - with someone probably a generation away with a thyroid health issue,
In some people Graves can ' burn itself out ' given enough time as the symptoms are not as acute or as life threatening as we tend to read and might you be this genetic link and your thyroid now damaged, less productive and with you struggling along trying to manage ?
Yes, I’ve long wondered whether my daughter inherited it from me, or perhaps it’s skipped a generation and it’s come from further back. I’m adopted and have very little knowledge of my birth families’ health history, which is a big disadvantage. Thanks for your thoughts.
If your daughter doesn't know of Elaine Moore - she might find Elaine's books and website of interest - I found it the most well rounded of all I researched though too late for me as I had already been treated with RAI thyroid ablation back in 2005 - and now deeply regret.
Did you advise your Dr of the supplements you had prior to labs? Biotin (B7) is actually used in the lab for processing thyroid tests so it gives a false reading. It is usually suggested to stop taking B7, 7 days prior to labs. It will show TSH lower than it actually is, and FT4 higher than it actually is. So, there's a good possibility that your TSH is higher 5.37 and your FT4 would be lower than 13.8. I would ask the Dr to let you have another test after going off the B7 for a week or so, due to lab interference.
No, I didn’t tell the Dr. as having a whole new set of bloods took me by surprise and I was feeling too shattered to even think about what time of day it was or what I had eaten! I’ve ordered a home test to get more realistic results.
Two things occur to me. Firstly, I think the NHS usually needs two raised TSH blood tests 3 months apart before diagnosing with hypothyroidism. Secondly, I'd want to get the vitamin D level down to within range as to much vitamins D is not good. Perhaps take your supplement every other day?
High Gamma GT is associated with live damage and can be caused by one or more of the following :
High intake of sugar, poor quality carbs, or alcohol are the ones that most commonly get a mention. But there are other possibilities. Read this link :
Since low thyroid hormone levels can also effect every cell in the human body, and good levels are required for liver health your GGT could be affected by that too.
I don't drink alcohol, but I'm a bit of a sugar addict. Cutting down on my sugar intake for a few months had really good effects on my liver enzymes.
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Vit. B12: 301 pg/mL (197-771)
Folate: 3.7 ng/mL (2.9-26.8)
Ferritin: 120 ug/L (30-400)
25-hydroxy Vit. D: 163 nmol/L (25-120)
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Your B12 is much lower than optimal. Some useful links :
The active types of B12 supplement are methylcobalamin and adenosylcobalamin. They are both available to buy (without prescription) on most websites selling supplements e.g. Amazon, Ebay, Dolphin Fitness, Cytoplan.
These have been recommended by members in the past :
Ferritin : Yours doesn't look too bad, but you could safely raise it to mid-range i.e. about 215.
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Vitamin D : Yours is good, but you might want to reduce your supplementation to reduce it to about top of range. If you take 8000 iU per day, perhaps you could keep the dose the same but reduce the number of days a week you take it - to say 3 or 4 days a week?
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