I'm new here, I've thought I might have dodgy thyroid for ages but the NHS always told me I was fine so I believed them. I've always struggled with energy and cold issues since puberty, before that I was kept nicely warm by my internal radiator, pretty much no matter what the air or water temperature was like!
I've always shyed away from pushing myself as I know I just can't do it, but after the death of the people who raised me and splitting up with a partner I realised that I wanted to try to get myself a career I actually would enjoy and that if I have a health condition that makes it hard, I'll just have to finally address it. So for the last 2 years I've been working on minimum wage and doing higher education qualifications in a new and pretty brutal industry. I knew it would be a nightmare but what can you do?
I'd been propping myself up with supplements to make it through every day, suffering headache and tinnitus bouts that lasted days and feeling like I had about 20 times too much adrenaline, constantly sweating etc. Then at Christmas a virus possibly flu, floored me and straight after Christmas I was into a very manual job outside in the cold all day. I had lost 1/2 a stone and felt constantly ravenous, and was losing more in that job I just couldn't get enough energy in! Every 2-4 days I'd run a fever and have to stay home. I am not overweight and know that many people don't think you can be hypothyroid if you aren't, and though I feel my symptoms mostly fit hypo I was interested to see if maybe I was hyper with the weight loss.
I changed roles and am now back to my normal weight. I got the following private test results. Because of my mouth full of dodgy old amalgam fillings I also got my mercury levels checked but they seem ok. (0.7ug/l reference range is <5.)
I'm in my late 30s, have the vast majority of hypothyroidism symptoms, all of my closest family members have/had type 2 diabetes. I've suffered hirsutism since puberty too so I'm sure something is up with my endocrine system.
I thought to check my old 23 and me data recently too and the first thing that stood out to me was that I have a homozygous DIO2 mutation - the one that ends in ***14, where your brain can't read the T3. That does make a lot of sense for me, I've felt for a long time that I have Asperger's/ADHD or similar. I saw a few other snps flagged up in red too but wasn't as sure what I was looking at. I only know one half of my family and have no idea at all about the health issues of any of my paternal line, which is why I got 23 and me.
Oh and last thing - not sure if it makes any difference but I also know from 23 and me that I have a homozygous MTHFR mutation, I think it's called C677T?
There's a bit more but since this is my first post I'll keep it short for now! What do people think?
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Your T3 is mid-lowish and would be commensurate with a mid-low T4. Your T4 is actually low. I am wondering if this often happens with a DI02 gene mutation - I don't know myself. Your negative antibodies suggest that you are not Hashi's hypothyroid.. Maybe others could help interpret..
I assume that you are already supplementing b12 (looking at your blood results)? If you want the b12 to be properly utilised, given your homozygous MTHFR mutation, you'll be avoiding folic acid so check breads, cereals etc(see links below that explains why) and should either have a diet high in natural folate or take some methyl folate. I would also recommend taking B6 (as p-5-p) and B5 with plenty of Magnesium and Zinc as these will support your adrenals..... You must get vit D checked (relatively cheap private test) especially as you're prone to flu - it'll help regulate your other hormones and come back here for advice (or pm Seaside Susie) if you need to supplement.
This website explains a bit about methylation issues. These 2 links may help...
Also, you may consider triggers (see an example in the following link) that make you feel worse.. for me, gluten and dairy are now gone from my life! Don't be a martyr though. I would definitely chase this up, but don't expect the GP to understand much, you may need to research an exceptionally good endo that understands HPA axis problems.
Thanks so much for your reply! Actually that's a good point that I hadn't noticed - since my T4 is lowish why is my T3 higher? Are they usually at the same point in their reference ranges then?
I'd not heard of the HPA axis though discovered Dr Myhill a couple of weeks ago and love her - as much for the confident no-messing scientist vibe as anything else, you don't meet enough of those types outside of education and they're so important and such an inspiration and good role model for people!
You're spot on with gluten, I've been avoiding it for a couple of years and if I relent I seem to pay big time with major headache, tinnitus, low mood and fatigue. The weird thing is the amount of damage gluten does seems to be related to the stress I'm under at the point of eating. I seem to get away with it if I'm having a chilled time but if I'm at some kind of meeting or event (there's never anything gluten free except fruit and cheese!), it'll floor me.
I've cut out dairy too just in case though never noticed anything as obvious.
I take all of the supplements you mention except not that type of B6 - is it important?
I only started on folinic acid a few days ago and it was after the test, because it looked a bit low. I can't take methylfolate, it makes me feel as if someone's tranq-darted me for days, I've tried it twice at only 400mg and my knees were buckling and I nearly fell down my stairs! Weird reaction I know, everyone else seems to get wired on it.
I'll check out those links, thanks!
I take basic vitamin D daily, would you still say I should get tested for it?
I'd definitely test for vitamin D.... it's a bit of a 'porridge' vitamin in that too much or too little can cause issues. It encourages calcium absorption from food which is fine provided it doesn't start clogging the arteries or soft tissues with excess calcium; kidney stones, for example. Vitamin K2 is said to help prevent that.
The weird reaction to folate could be a thing to do with methyl-trapping and it's to do with all the other co-factors being in abundance. Follinic acid is closer to the 'real' thing than folic acid, so if it works, stick with it!
Sorry, didn't mention about B6. The methylation links above may cover it, but p-5-p is the most bio-available b6 (co-enzyme) and also not require conversion before it's excreted. You can 'overdose' on cheaper b6 at higher doses, and there are tales of nasty side effects, but far less likely on p-5-p.
Like b12, B6 requires Magnesium in a lot of the processes that it's involved with.
Also, given your symptoms of headaches I would go a bit easy on the b12... unless it's important that you have a high dose? There is probably the danger of over-compensating when you know you have a genetic defect. I'd definitely check this out with the PA forum for advice.. You'll be using up magnesium with high levels of circulating b12 (according to Carolyn Dean who wrote 'The Magnesium Miracle') Certainly for me, when I increased my magnesium intake, I have felt much better - physically, emotionally and mentally.
That's interesting that it competes with magnesium, given my daily cramps I'm sure I need magnesium more. Like you say I was taking it because I know about the methylation!
I just take an innocently tiny looking H&B supplement daily though it's a huge dose, they often seem to be. I'd thought you couldn't have too many B vitamins because they're water soluble but this test shows you can!
I have just discovered I have POTS. I go from 65bpm at rest to 125 standing. No wonder I got so ill measuring up new build apartments using lasers on the floor and running up and down stairs all day to witness services tests... I've been referred to a cardiologist but of course it's only a syndrome so that alone is unlikely to help me much. I suspect you're right and that Dr Myhill's logic holds my best hope. Money and time are a major issue right now though!
I tried T4 - didn't do much. T3 - made me sleepy but it did make me feel calm and my heart pounding went and my fingers and toes warmed up and stopped sweating. It worked much better than any beta blockers. I stopped because of the sleepiness. Going to try it again to see if it affects the pulse issue.
I take high dose biotin and have just discovered this can give false high readings for thyroid blood tests. I'll try to re-test without biotin asap.
P.O.T.S is linked to low / imbalance of electrolytes including plain old salt. The biotin would have been competing with B5 which is very important in adrenals, along with Zinc, P5P and Magnesium and Vitamin C. Keep up your fluid intake but add in some salts and Vit C. Look up how Magnesium helps with tachycardia...Dr Dean's website is helpful.
Magnesium is a most reactive element that bonds easily and possibly for that reason it is readily excreted like Sodium and Potassium. It does not hang around for long as one of 100s of metabolic processes used it up. More necessary than anyone assumes. I take a total of 450 mg of Citrate form, but spaced out in 150mg doses at middle of morning, late afternoon and before bedtime. Fibro symptoms, anxiety and sleep are all much better and I have more energy without being 'hyper'. Best to start with an evening dose for a few weeks and work backwards making sure you get no digestive upset. (Be careful if you have kidney issues, or other meds that may have interactions as excess is excreted -especially if you take unnecessarily large single doses.)
Ah of course it's next to Sodium but one period over isn't it! I'd not thought of it like that. Thanks, I'll try spaced out like you do. And good to know it can have such positive and noticeable effects!
Near the top of Group 2 above Calcium which is interesting as we have always been so bothered about getting enough Calcium which is really plentiful in Western Diet, unlike Magnesium which is getting washed out of the soil.
Just to add an update, it looks like it's POTS, though of course that's a symptom not a cause. Referred to a POTS cardiologist, had 3 types of test but my appointment with the consultant isn't until summer.
I suspect I have gut, histamine, thyroid and cortisol issues that together make POTS, possibly sleep apnea and sjogrens too. It seems POTS is linked to Asperger's, which is something I have suspected I had on and off since I was a small child.
I was accused of having health anxiety by my doctor a few days ago. Luckily I was feeling calm enough to politely point out that I'm not remotely anxious about having additional issues, it's just that I've felt ill for decades and that the only reason I'm being seen now was because I spotted the signs and pushed for it.
I believe my symptoms are manageable, even reversible, and I also know now that I can't leave it up to doctors to drill down every option as they never have before and I'm not going to take it lying down!
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