I’m interested in your observations, suggestions and ideas about the following.
I know I’m not alone in experiencing that horrible, sinking moment where, following yet another GP appointment, it becomes increasingly apparent that you’re going to have to become a low-level thyroid expert and human guinea pig in a quest to feel well. Thankfully we have this amazing forum….
In summary, I’ve been experiencing hypo symptoms 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, as the the results are usually within range, the fact that I’m symptomatic is, frankly, irrelevant. So frustrating and upsetting.
In an attempt to feel better, 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, plus I’m working on optimising vitamins.
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
Also had both TPO and TgAb antibodies tested and both came back negative.
FYI, testing was carried out in accordance with the advised protocol (timings/last dosage/fasting/withholding of biotin).
I was deflated on two seemingly contradictory 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 and what I can only describe as mild hypoglycaemic symptoms if I haven’t eaten for a while.
Thanks for reading and thanks in advance for any feedback.
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J972
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No thyroid hormone replacement works well until your core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal.
You have had a lot of advice already and not sure what else I can add -
if you want to reread previous replies just press the icon alongside your ' face " and you will be taken to everything you have written and all your replies from forum members .
Looking back I see SDragon suggested an iron panel because of your low ferritin - has this happened now and what was the answer ?
Hashimoto's does tend to throw another spanner in the system as your are liable to erratic own thyroid hormone production and can experience symptoms akin to hyperthyroidism but these auto immune attacks are transient but your thyroid is becoming increasingly damaged and disabled and you will need needing more support from which ever thyroid hormone replacement you choose to go with.
Have you thought of trying to reduce your immune system triggers which I believe for Hashimoto's tend to revolve round healing the gut and food intolerances.
Many forum members follow the research and suggestions of Dr Izabella Wentz :
Dr Sarah Myhill recently launched her new book which recommends people self medicate with supplement such as those you are buying - I shall try and find that and link you in :
I'm self medicating but taking Natural Desiccated Thyroid - and it is easy to chop the tablets in quarters and so gently titrate doses up or down by just 1/4s.
NDT is full spectrum thyroid replacement but with a known measure of T3 and T4 in each grain / tablet whereas your OTC supplements whilst, full spectrum, has no measure of content and the question is the reliability of the contents of each bottle - as if no 2 bottles are the same - it may get confusing try to find your correct dose to restore your health and well being.
You can get thyroid-s pretty cheap online if you are prepared to foot the initial bill. Also, maybe you are lacking adrenal hormone which could explain why you can't handle the additional thyroid? I'm going to start on Adrenavive soon, it's from the same people that produce Metavive. If I was supplementing B+ vitamins, had a good amount of Vitamin D in me, and had a decent diet - this could be a good place to start? I had exactly the opposite reaction to NDT you had, and as it turned out, my vitamin D was very low among other things. Keeping a track of your pulse/temp throughout the day will give you a lot of insight with an accurate thermometer by the way. Thyroid blood tests are also more often than not appropriate for figuring out if you're on the right dose or not. You can have your blood T3 levels maxed out or even elevated way above the labs ranges, and your body might not be able to use most of it. Everyone is different. I'm sure you will get there
Hi ColdBanana and thank you for your response, I really appreciate it.
I’ve received details from a forum member about where to reliably get my hands on NDT so, I’ll definitely be looking in to that.
Funnily enough, I started on an adrenal glandular supplement recently, it’s the Thorne one and contains the cortex. I can’t remember why I plumped for that one over the Adrenavive, which I’ve seen recommended here. I can’t say for certain that it’s helping, but, what I will say is that I forgot to take it yesterday (work is quite stressful at the moment) and I felt peculiar today.,.. I wondered whether I was experiencing withdrawal effects?
Can I ask what you mean by NDT having the ‘opposite effect’ to me? Do you mean that it didn’t work (because of sub-optimal vitamin levels)?
I’ve seen various posts about tracking temperature and pulse, is this something you do? And if so, what’s the protocol?
At the time, I was taking 5 or more grains of a GOOD NDT. When I felt no effects after been on 5 grains for awhile, I decided to check my bloods. My TSH was 100% supressed, and my FT3 was far above what was considered 'normal' - on paper, to most people, I would appear hyperthyroid. Except I was very much hypo. None of my symptoms had changed or even slightly improved, and my temps were still very low, especially in the morning.
Some believe that dosing Thyroid based solely on blood testing is inappropriate; and I am one of those people, based on my own experience. Measuring your pulse and temperature at certain times of the day tells you much more, because it shows how much, if any, Thyroid, you are using. If you send me a PM I can tell you how I do it. I would also look into Broda Barnes, Ray Peat & Tom Brimeyer! Also, something as simple as measuring your Achilles tendon reflex can be VERY helpful. Try searching "The Ankle Sign of Hypothyroidism" on the net when you get chance.
Before you go ahead and order any thyroid hormone replacement please read the post linked to below then contact myself or another member of the Admin team by private message to see if we have any feedback on any recommendations that you are sent
Some of your symptoms are in line with a possible b12 deficiency. Can you see if you can get ahold of your lowest value tested/documented? If you are supplementing it will not be an accurate base.
Just so you can cross if off in tandem.
---+----+
I had to get off Thyroid S due to border issues (not UK), but I am absolutely optimistic for you. Plus it has the freedom to work on your own precise sweet spot in peace! Which doctors do not usually provide.
All the best to you J927 (You sound like a wily spy! Smiling. )
Oh I completely concur! My most recent serum B12 test was as follows (Feb 2023):
Serum vitamin B12 level 432 ng/L [187.0 - 883.0]
I’ve been supplementing as per the suggested protocol and products on this site and should probably arrange to be tested again soon. I know from this site that optimal B12 is thought to be around 900/1000. I’ve had my active b12 tested privately and that was good. I’d consider getting intrinsic factor tested checked if I continue to feel so pants.
I have to say that I have a particular interest in B12 insufficiency: my ex/kids’ dad was *terribly* ill, so bad that he was misdiagnosed with motor neurone disease during lockdown (bloody terrible and terrifying), eventually told he had cfs/me.
Fast forward to me discovering healthunlocked, reading about PA/b12/thyroid issues, learning that people are resorting to self injecting B12 obtained via the net…..I urged him to give it a go - he literally had nothing to lose - and remarkably he’s getting better, day by day. I should add that he’s spent thousands of pounds seeing specialists about his failing health (including the misdiagnosis) AND had asked over the years whether it could be B12 deficiency related. Dismissed out of hand. Nothing short of shocking.
So, as you can imagine, I’m acutely attuned to the possibility of B12 being a possible player in my symptoms plus, sadly, I’ve developed a cynicism with regards to particular elements of the health profession. I really wish that wasn’t so.
Thanks ever so much for responding to my post, I’ve received details of where to buy thyroid- s so am going to pursue that next. Take care 🙏
I can only comment on my experience of Metavive which is, after supporting my adrenals with adrenavive and optimising nutrients, Metavive works for me in that I’m now more or less aymptom-free. Even though I suspect I’ve had Hashi’s for at least 22 years, I’ve never felt unwell though I’m pretty sure there’s plenty of damage. My main symptoms were severe insomnia, weight gain, sweats, memory, focus and concentration loss. Can’t lose the gained weight but I’m experimenting now (again!) with increasing the dose to see if that helps because I feel there’s room to do so. TSH is almost non-existent but frees could do with a nudge upwards. FT4 quite a bit, FT3 just a tad
Currently taking:
Met Pro x 1 on waking (porcine and equivalent of Met l x 4)
Met lV x half before dinner at around 6.30 (bovine and equivalent of Met lll x 1)
I sleep so much better now and feel the vitality and memory problems improving
I’m really pleased that you’ve found your regime after having symptoms for so long. I’ve tried increasing my dose of Metavive and every time I get awful palpitations and diarrhoea. I’ve concluded that I need to try a different treatment, whilst continue to optimise vitamins and minerals. Many thanks for responding 👍
Oh goodness, I hope I didn’t come across as a Metavive sales rep. I’m just so evangelical about Metavive because it changed my life. So many people on the forum get talked out of sticking with it because they’re unsure of how it works and yes, it will give palpitations and diarrhoea if it’s increased by too much or too quickly, after all, it’s an unadulterated bovine or porcine gland, although nucleotides were added a few years ago - and as such will stimulate the metabolism. I’ve tried many different types of glandulars none of which were good enough
I’m so sorry to have struck the wrong tone and sounded meddlesome. Good luck with whatever you decide. There are options and I’m sure you’ll find something you’re happy with
I think something has been ‘lost in translation’, (the perils of messages/the absence of body language!). Either that or my rushed response to your generous post came across as curt. Apologies. You don’t come across as a sales rep! You’re clearly passionate about Metavive because it’s transformed your life. I can completely understand that ! Sorry once again if I gave the impression that I was somehow displeased with your post, that really wasn’t my intention. 😊
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