I finally decided to bite the bullet before Christmas and to start taking Metavive 1 15mg (1 tablet a day). Have never been diagnosed with a thyroid problem but have posted here a few times as suspected it then I had a large nodule last year and had a hemithyroidectomy beginning of November. Unhappy with thyroid results before the op (despite GP & specialist always saying it was normal), and it’s felt worse since the op. I’ve had problems with vitamin/mineral deficiencies for several years (I supplement regularly now) and have also been diagnosed with mild CKD and low progesterone/testosterone. Since the op some of my old symptoms have come back. I’m tired, achy, lethargic, have put on weight despite being very active and not changing my diet, my allergies and asthma have got worse, nails are breaking and I have a lump in the throat feeling, oh and I still only have ½ my eyebrows! Anyway started the Metavive and 6 weeks later have had some blood tests done. Here are the last 3 lots for comparison.
Pre op (NHS test) 15 Oct, taken at 8.30 am fasting, never taken Metavive
TSH 2.07mu/l range 0.27-4.2
Free T4 15.2 pmol/L range 12-23
Free T3 4.5 pmol/L range 3.2-6.8
5&1/2 weeks post op (Medichecks) 12 Dec, taken at 9 am fasting, never take Metavive
TSH 3.25 mu/L range 0.27-4.2
Free T4 15.7 pmol/L range 12-22
Free T3 4.86 pmol/L range 3.1-6.8
Thyroglobulin and thyroid peroxidase antibodies both negative
Ferritin 21.4 ug/L range 13-150
Folate 8.76 ug/L range >3.89
Active vitamin B12 144 pmol/L range >37.5
Vitamin D 65.4 nmol/L range 50-175
6 weeks post starting Metavive (NHS) 6 Feb, taken at 8.30am fasting
(No T3 this time because it’s NHS and I couldn’t afford another medichecks test!)
TSH 3.41 mu/l range 0.27-4.2
Free T4 12.7 pmol/L range 12-23
Ferritin 25 ug/L range 15-300
Folate 6.6 ug/L range 4.6-18.7
I supplement with low dose iron (can’t get ferritin higher than 30 because if I do I end up with over range blood iron saturation and symptoms of that, I just have to keep ferritin above the low end, and my last blood test on 6 Feb confirmed I don’t have anaemia)
I also supplement with vitamin B12, folic acid, vitamin D and K and have natural progesterone and DHEA prescribed. Oh and I am dairy, gluten, alcohol and soya intolerant so tend to have quite a natural diet.
So, I’m worried that my TSH is rising and my FT4 is at rock bottom and am wondering what I should now do with the Metavive? Should I increase the dose? I know my GP won’t do anything as I’m still in range, so it’s down to me, with the help of you wonderful people out there!
Thanks in advance!
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Julesboz
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If those were my results I would increase the Metavive. You need a lower TSH and a higher FT4. You may eventually need quite a bit more than your current dose.
With your Active B12 at 144 you don't need to supplement with B12.
Is your folic acid prescribed?
I would change to a B Complex that has a good amount of methylfolate and a small amount of B12.
Thanks, I seem to remember that my lips went numb/tingly and my face felt like it had ants crawling on it. I looked at all the side effects of the various B vitamins and concluded (maybe incorrectly) that B6 sounded like it might be the culprit. When I stopped taking the B complex the symptoms stopped after a day or so, so I went back to taking individual B vitamins.
Thanks SlowDragon, I’ve just ordered. It looks like there’s a different form of B6 in that brand than the previous brand I tried and may be better in line with hellvella’s post.
Thanks! Is there any recommended way to increase the dose (increments, frequency etc)?
I haven't used Metavive, but even though it's a glandular with no declared hormone content I think I'd be inclined to treat it like any thyroid hormone - synthetic or NDT - and just do it gradually and not rush it. Don't make big increases in dose otherwise you may miss your sweet spot.
The only worth while guide is the t3 in terms of blood tests but you can be guided by pulse and temp ( before getting out of bed) and your symptoms. You does is tiny, you are still symptomatic so an increase is probably needed. You want a temperature of around 37 and a pulse between 70 and 100 depending on how much sport you do.
Oh thank you, that’s interesting to know. I took a double dose last night of the Metavive and will do that for 6 weeks. Hopefully then I can afford a medichecks test and will test for T3. My temperature is normally somewhere between 35.8 and 36.4, so it’ll be interesting to see if it changes and I haven’t a clue what my pulse is! I’ll check it and keep a record.
So you self-diagnosed hypothyroidism and are now self-treating with Metavive?
Your labs before starting Metavive were not that bad IMO. True, it's often said that the TSH should not be above 2 and preferably around 1 or slightly lower but, as far as I know, that applies to hypothyroid people on levothyroxine only. Not sure what an optimal TSH looks like in a healthy individual not taking any hormones; does the same apply as to people on levo (would be interesting if anyone knows)?
But I have read that euthyroid people without latent thyroid disease have midrange FTs which is why I say your labs did not look that bad before starting Metavive.
I can understand why no doctor wanted to put you on thyroid hormone replacement since all your tests came back in range.
The question is: how can you be sure you have thyroid disease with in-range labs and no antibodies or anti-thyroglobulin? Symptoms alone are not enough to diagnose thyroid disease, as far as I know.
Also, how do you feel since starting on Metavive: any improvement at all?
If you have full-blown hypothyroidism, 1 Metavive 15 won't be enough. But I doubt it is possible to decide once and for all you have hypothyroidism based on your previous labs.
Hi there Cat68, yes I can see where you’re coming from and for a few years I’ve thought I’ve had thyroid symptoms but because my labs were ‘normal’ and doctors have insisted that I’m fine I’ve concentrated on diet and trying to optimise my vitamin and mineral levels. However I’ve now decided to go this route for several reasons:
A) before the introduction of the TSH test, doctors WOULD diagnose hypothyroidism based on symptoms and prescribe NDT and my symptoms (particularly the missing eyebrows funnily enough) would indicate sluggish thyroid. It’s a modern phenomenon to ignore symptoms and only go on blood test results.
B) I developed a huge benign nodule last year and I can’t believe that that’s the indication of a perfectly healthy thyroid. In fact, my surgeon said I was ‘unusual’ as they normally develop as a result of thyroid disease and my bloods were ‘normal’ - so maybe they’re currently not normal for me? Certainly years ago my TSH always hovered around 1.6 and it’s now 3.4 so that would indicate something going wrong.
C) I’ve done some reading around how the ‘normal’ TSH levels were set and there’s some dispute that the upper level is right. In some countries they have adjusted the upper level to 2.5 (which I exceed). I didn’t save the links but what I read were scientific papers.
D) Just because no antibodies showed up on my blood tests, it doesn’t mean they don’t exist. Apparently a proportion of Hashimoto’s sufferers never show antibodies in their blood test results (I think 25%?)
I’m not suggesting I have full blown hypothyroidism, I’m not bed bound and seriously ill. I am just fed up of not being 100% despite optimising my vitamin and mineral levels, exercising, eating a healthy diet, not smoking or drinking and getting enough sleep and I’m hoping a glandular supplement will help with the advice of all the knowledgeable people on this forum 😊
Yes, I see what you mean, and it's frustrating when symptoms appear and you don't know what causes them.
However, I would expect your free Ts, especially your free T4, to be lower in hypothyroidism.
It's possible you have subclinical hypothyroidism at this stage, but I am not sure there is consensus as to how it should be treated (I suspect most doctors prefer to wait for it to turn into full-blown hypothyroidism).
I know that before levo became the standard treatment and the TSH the most important indicator of thyroid health, doctors used to prescribe NDT based on symptom-relief rather than labs. However, there is a difference between disregarding the TSH once on thyroid hormone replacement and using the TSH to make the initial diagnosis.
If you feel better once you self-medicate, that could mean you were right. But then you'd need to keep an eye on your labs to make sure you raise your dose if needed.
One problem is that once you start self-medicating, no doctor will be able to diagnose you with hypothyroidism later, so you will have to keep self-medicating.
Thanks, I think with everyone’s help I should be ok. I also forgot to say that I see a private GP who prescribes me my natural progesterone and DHEA. She’s a qualified GP who’s worked in the NHS for years but now works privately as she takes a more holistic view and specialises in hormones. I told her what I’d done and she was impressed with my research and told me that if I hadn’t already started taking Metavive then she would have suggested it. Her reasoning was that, as we get older, our thyroids begin to struggle and, as I now only have 1/2 a thyroid, it’s likely that mine will struggle more and will need a bit of help.
I feel I have to say something here. Cat68's advice reflects the conventional, mainstream medical view. It doesn't work for most people here, which is why they are here in the first place. Your assessment of your clinical signs and symptoms seems spot on to me.
Glad to read you have a helpful private GP who can help you monitor your progress. Good luck, and I hope you soon start to feel better on Metavive.
Thanks Hillwoman, I realise there are differing views and I’ve come to my conclusions after lots of research and I don’t believe that conventional modern medicine always works for people who are borderline, have vague symptoms or for preventative medicine. In my experience the NHS is superb with immediately life threatening illnesses (I’ve had plenty of experiences in my family), but when it comes to chronic conditions, especially involving women, it doesn’t always meet the same standards. It’s not surprising with the lack of funding and staff shortages, and I feel very sorry for NHS staff who are all generally excellent, but if you are one of the people suffering it’s tough!
Believe me, I am all for self-diagnosing and self-treating...been there, done that. Actually, still doing that. Most of us don't have a choice given how most doctors tend to treat thyroid disease.
All I wanted to say was that...it can be difficult to self-diagnose and self-treat initially, since it will then be all but impossible to get a diagnosis. If someone who has not been diagnosed with hypoT goes on thyroid meds, her FTs will go up, her TSH down, and most doctors will not diagnose her with hypoT (not even if her antibodies end up out of range).
But that is not necessarily a problem if you are willing to self-treat for the rest of your life...many hypoT patients end up having to anyway, because their doctors will only put them on T4 meds, and will care about their TSH only.
Hidden I've had hypothyroid symptoms for at least 50 years with normal range blood tests. Doctors & endocrinologists don't seem to understand or even acknowledge that we may be symptomatic & need treating when all they look at is numbers not a person. They're certainly ignorant regarding secondary hypothyroidism & the general functioning & interactions of our endocrine system. They're also ignorant regarding the cofactors we need to ensure good thyroid or any other hormonal health. Taking NDT (now Metavive) has been the best thing I've done for myself so I understand fully what Julesboz is trying to achieve. I wish I'd known how to treat my lifelong health issues so much sooner. I tried diet & supplements for several years but nothing on earth will ameliorate the effects of insufficient hormones other than replacement hormones. The occasional blood tests are useful, but I dose solely on symptom relief which is more important to me than numbers.
I increased my Metavive very gradually, starting with one tablet as you've done. When I did take up it to 2, I split the dose and took the 2nd late afternoon, as according to my research, As others do, I treat it like NDT. I carried on increasing slowly till I was at 4 tablets, when I noticed started to notice feelings of anxiety and rapid pulse, so took it back down to 3. With a little jiggling, I found out what was optimum for me (3 daily and 1 extra twice a week). I confirm this with Medicheck tests which have me bang in the middle of where I should be. Hope you can find what suits you.
Oh that’s brilliant to hear from someone who’s been through it. Thanks very much! It’s useful to hear it’s best to split the dose. I currently take the tablet just before bed because I eat breakfast as soon as I get up (due to having to dog walk). I need to work out when would be best for a 2nd dose.
I take mine first thing as I prefer a short 8 hour eating window & fit in B, D, & iron supplements during the day, then other minerals in the evening. I’ve started taking a bottle of liquid iron for afternoon walkies as it’s the best time for me to take it away from food as I have too much calcium at mealtimes.
When I started self-medicating on NDT, I started on a quarter grain & worked up by another quarter about every 8-10 weeks until I got to 3/4 grain. I felt good for a while (once I stopped eating unfermented soy) but as is common once our bodies have something it's been deficient in for along time, I had to increase again. I couldn't afford the tests & meds, so relied on how I felt aside from the odd NHS blood test.
See how you feel taking two Metavive i or swap to Metavive ii, then work your way up to a Metavive ii plus a Metavive i, & so on until you feel consistently better &/or you're happy with your test results. I need a more in winter than summer so be aware of seasonal changes, though not everyone does this.
Winter temperatures mean I need more NDT to produce enough body heat to be comfortable, & to ameliorate winter skin issues. My lips being dry (worse if they peel) tell me I need to increase. Needing lip balm more than once or twice daily is my warning sign. The winter I had to ration NDT was horrible, seasonal excema & dermatitis returned & a cough lasted all winter, despite increasing T3 to the equivalent dose.
Oh that’s very interesting. My lips are so dry, I’m using lip balm all the time. My heels are cracked and dry too and constantly need thick cream. I wonder if they are symptoms for me too? I’m interested to see if metavive does help.
I still have 3 lip balms to hand from a lifetime habit.
My heels looked like the before advert for heel balm though none ever ever worked, & I had plantar keratosis. Every winter I had excema on my shins, & peri orbital & peri oral dermatitis. In summer I burned walking to my local post office which was a 20 minute round trip, so was always sun shy & likely very vitamin D deficient too. My body temperature when I did the Barnes basal body temperature test was 35.2 degrees celcius for 4 months, so no wonder my immune system didn't function properly. I bought a second thermometer for the second week as I was convinced the first was faulty. There were so many horrible things other than always being cold, aching, & hungry. My GP diagnosed fibromyalgia & pushed more drugs that would mask the symptoms rather than supplements & the medication that would help.
When my pituitary tumour was diagnosed, the endocrinologists I've seen were no better & definitely no wiser. The last told me to stop all thyroid meds for a month then they might condescend to give me T4.
It’s such a shame you had to suffer so much. I’m not quite that bad but have lots of odd unexplained symptoms that, when I ask the doctors why I keep getting these odd things and are they all related, they all shrug their shoulders and switch off, I think because everything is mild and not debilitating : unexplained low kidney function, food intolerances, aches and pains, multiple cases of bursitis & tendonitis, unexplained bruising, fatigue, mineral/vitamin deficiencies, low temperature, increased cholesterol, missing eyebrows, dry/sore eyes, dry skin, bags under eyes, weight gain, low libido, some loss of drive & confidence, feeling less inclined to be sociable etc etc etc. It can’t all be explained by age, I’m only 54, not 84!!
Doctors can't relate these symptoms to hypothyroidism as they aren't adequately trained. I am so grateful for the wonderful advice on this forum for getting me on the right track! Keep going with Metavive & tuning your supplements, then hopefully you'll start to feel better within a few months.
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I’ll start by going up to 2 tablets a day for 6 weeks and see what happens.
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