I have self-diagnosed hypothyroidism (through symptoms and blood test) , the range is not enough for doctors to recognise it as worthy of treatment but symptoms are debilitating - so I have decided to start low dose Metavive 1 to see if it alleviates my symptoms .
I would be grateful for your experiences , and personal accounts of how long before you experienced any improvement , any side effects , how you felt etc
I’m a bit anxious to start medicating , but I’m hopeful it can help get me back to my old self!
thanks all !
Written by
Uptime
To view profiles and participate in discussions please or .
I've had a few blood tests to try and figure this out over the recent years .. most recent one below from 2 weeks ago. Weirdly my thyroid blood tests seem to come back OK and in the normal range, I 've had a full blood counts for anaemia etc too (and liver profiles , vitamin , D , testosterone, CRP, cortisol, Haemoglobin, and they all came back optimal too, I'm positive something is wrong, maybe my body just needs more of this stuff than the lab ranges? (I'm at a bit of a loss) .. I used to call it Mystery Flu because I just felt routinely wiped out mentally and physically and freezing cold for weeks on end.
The symptoms I'm dealing with all seem to point to hypothyroidism of some kind so although the doctor won't entertain it I've decided to test supplementation and see if I feel better for it.
Total Cholesterol/HDL Ratio: 3.7:1 ratio (optimal)
Triglyceride/HDL ratio: 0.84:1 Ratio (optimal)
Vitamin D: 118 nmol/L
For background I'm coning up for 40 years old , male, the symptoms have been steadily worsening for maybe 10 years or so?! .. it flares up worse some times than others .. even now occasionally i feel back to normal with no interventions .. it's amazing but becoming rare now! initially years ago it just very light and didn't think much of these symptoms (maybe just attributing it to stress, or fighting off a virus etc) , but nowadays it's most of the time and debilitating so v keen to solve it!
Frequent bouts of extreme 'Brain Fog', difficulty concentrating, memory recall etc. started occasional and didn't think too much of it , now more often than feeling 'normal'
Changes is mood & energy, I often feel low mood or fatigue despite good sleep hygiene, or mood swings , low mood , anxiety which are not attributable to lifestyle factors
Lips feel dry , excessively thirsty regardless of how much water I drink
My Cholesterol has increased dramatically, although I eat a very healthy diet, exercise and in good physical shape.
Heavy upper eyelids, with a kind of waxy sheen wen symtomatic.. darkening pigmentation above them between eyelids and eyebrows .. becoming very slightly 'chicken skin' textured
I feel freezing cold all the time , I have measured myself across the few weeks with armpit thermometer .. minimum reading 35C(!) , normally 35.3C maximum 35.6C .. others in the same room normal temp ~37 and feeling fine
I have slight horizontal ridges visible on toenails a bit like record grooves.
My hair has become much finer , and have noticed a lot more hair left on comb
my tongue has swollen up .. now has scalloped/frilly edges where it's surrounded my teeth , double whammy on energy as this has made me snore very badly in recent years (despite being lean etc)
I exercise frequently (even though it's often difficult finding the energy) and eat very healthy , lots of veg, red meat - exercise wise I walk a lot and do weights etc .. I'm not overweight and have managed to maintain a decent physique despite it getting more difficult every year , (I still have defined muscle/abs etc but requiring steadily less and less calories to keep it and prevent fat building )
I supplement daily Vitamin D 4000iu+ vitamin K2 100ug during winter/daylight savings , and lots of time in the sun over summer months so these levels are kept fairly good
I also recently started (maybe 6 weeks ago) daily 100ug Selenium , and 100iu Vitamin E - in an attempt to see if it improves thyroid related symptoms (no noteworthy improvement from this yet , but appreciate it's early days)
you certainly have a lot of symptoms! I’m surprised you haven’t received more replies. The scalloped tongue is definitely a symptom of something but I can’t remember what - I’m sure you can find out on a Google search.
Can I suggest you post again but change your heading to something like “Are these symptoms hypothyroidism?”
Another piece of advice is to always add the lab ranges to your results when posting here - just put them in brackets (—).
if your TPO and TgaAB are both positive (you don’t give the levels above) then you have Autoimmune Thyroid Disease sometimes called Hashimoto’s or Ord’s.
it will help responders if you add the lab ranges to your blood results ( you can edit the post). Lab ranges differ quite a bit so it helps a lot.
I felt dreadful until TSH came under 1. GPs reluctant to diagnose until you have two TSH readings over 4.8-5.0 (depending on the lab range).
Classic symptoms, especially that tongue!
I don’t have experience with Metavive, but I remember Dr Sarah Myhill’s latest book and Dr Barry Durrant-Peatfield’s Your Thyroid and how to keep it healthy both suggest protocols for starting. Both recommend you take basal temperatures (immediately on waking) and resting pulse averages (on waking again) as these can guide you on dosage when self medicating.
For all other Auto Immune I recommend Isabella Wentz books, diet protocol etc.
You really need to get your Vit B12, folate and ferritin tested. I believe low B12 can cause issues with your tongue. Check out symptoms of low B12 and folate.
My daughter has had great success with Metavive 11. She was in a similar position to you, with a TSH that had slowly risen to 4.8. Her GP offered a diagnosis of chronic fatigue and depression after two years of increasing exhaustion and flatly refused to medicate for hypothyroidism as TSH was "in range". So in desperation I bought some Metavive 11 for her, and she hasn't looked back. Starting on one capsule day, she built up to three per day, she has got all her energy back and is enjoying life again. Her brain fog has disappeared. But her T3 went too high (private blood test) so she has now cut back to 2 per day. Metavive 1 is half the strength of 11, so she may need to add one of those to "perfect her dose". Her TSH is down to 1.6. The only problem I can see with treating yourself is that your TSH is not going to rise to the magic number that NHS require to treat you, and therefore you will be stuck with having to medicate yourself for the foreseeable future. I hope it works well for you. Remember to increase the dose slowly....good luck.
thank you very much for sharing your experience, and I’m glad to hear of your daughter’s success! It felt like such a lightbulb moment when I realised I had absolutely archetypal hypothyroid symptoms .. then soon snatched away as the doctors just check a computer screen before dismissing it completely.
I looked at a distribution chart for what ‘normal’ is for TSH, and around 4 seems miles from average
I also tried asking for an ultrasound to physically check if my thyroid was atrophied to help confirm a diagnosis but they indicated they wouldn’t do this, even with a TSH of 10+ as they would only medicate based on TSH above threshold . It’s been frustrating, but I’m feeling determined to take control and not just wait for the condition worsen for another few years. If needed I may even go abroad for the ‘health tourist’ route later as the NHS seems like it is at breaking point. Very grateful for help and experiences from you and others on the forum to help find the way back to feeling good again!
Hi Uptime, I’ve just come across your post and the parallels with my situation and symptoms are startling. This particularly resonated with me:
“It felt like such a lightbulb moment when I realised I had absolutely archetypal hypothyroid symptoms .. then soon snatched away as the doctors just check a computer screen before dismissing it completely.”
That horrible, sinking moment where it slowly dawns on you that you’re going to have to become a low-level expert and human guinea pig in a quest to feel well! Thankfully we have this amazing forum….
I too have been experiencing hypo symptoms (I realise in hindsight) for 10+ years, back and forth to drs, the classic TATT (tired all the time) added to my notes. Numerous tests, both NHS & private, suggest that I’ve got hypothyroidism (including TPO antibodies, eg Hashimotos/Ord’s). But, like you, the results are usually within range therefore my symptoms are, frankly, irrelevant. It’s upsetting, isn’t it?
So I started self-medicating with Metavive 1 (40mg) in mid-February and have built up to taking just 2 capsules daily (i.e. 80mg). I do this on an empty stomach when I invariably wake in the early hours (keep them by my bed). They’ve certainly helped with many of the symptoms, namely slightly improved stamina, hands/feet no longer cold, aches and pains are perhaps 80% better. My feet still really hurt, especially on waking, and I’ve read on here that plantar fasciitis is strongly linked to hypothyroidism. I’m now gluten free, which has also helped with the overall improvements, plus I’m working on optimising vitamins.
Now, I’ve tried increasing my Metavive dose from 2 to 3 capsules but each time I’ve experienced horrible side effects, namely diarrhoea and palpitations. I would take the 3rd capsule later in the day, not alongside the other 2. Any suggestions from anyone as to whether the side effects will subside if I persevere are gratefully received.
Just this week I had my thyroid checked via randox health. I was pretty deflated when the results came through:
TSH 3.06 miu/l (range 0.35-5.5)
FT4 15.70 pmol (range 11.9-21.6)
39% through range
FT3 4.17 pmol (range 2.8-6.5)
37% through range
Had both TPO and TgAb antibodies tested and both came back negative.
Testing carried out in accordance with the advised protocol (timings/last dosage/fasting/withholding of biotin).
I was deflated on two seemingly paradoxical fronts: firstly, that my results weren’t ‘bad’ enough to warrant another trip to the drs to seek a formal diagnosis and, secondly, that the Metavive wasn’t providing the relief I hoped it would (although it might be too soon to say?).
So, in summary, I’m compelled to continue self-medicating but I wonder what to try next. I’m prepared to pay (within reason!) for medication/supplements/NDT but honestly find the various options mind-boggling. Hence why I started with metavive, due to its availability/ease of ordering. I still struggle with fatigue, brain fog, palpitations (most noticeable at night), swollen tongue, foot pain/generalised pain, light/sound/smell sensitivity.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Do thyroid hormones replace what the thyroid produces itself?
First endo appointment on 04/03/14 - what should I expect?
Two week referral- what to expect? 
What to expect from T3?
First week of Nature-thyroid feel worse.
