Newly diagnosed thinking of trying metavive. - Thyroid UK

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Newly diagnosed thinking of trying metavive.

ockerdoc profile image
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I’m a 50 year old male and I’ve been experiencing a variety of symptoms for probably the last 4 years looking back. I didn’t even realise the thyroid was such an important organ. I used to be in the gym out running regularly but probably for the last 3-4 years these symptoms have got progressively worse. Fatigue, lack of concentration I used to read books regularly now I can’t even focus on one , constipation, bad memory, zero libido and random foot pain. I just don’t feel like myself anymore i feel like I’m operating at around 50%. I had a full check last year and my TSH was 4.7 (0.27-4.2). I didn’t think that much of it at the time I thought it was because I had Covid. Then I got tested again recently with a full thyroid panel my TSH was still 4.5 my T4 was 13.1 (12-22) so I’m pretty much borderline low with T3 4.75 (3.1-6.8) TPO <9 (0-34) TG 19 (0-115) . I also have mild psoriatic arthritis which apparently makes me more likely to have hypothyroidism according to the literature. It makes sense now these symptoms have been gradually worsening probably as my TSH has been rising. The Doctor that reviewed the tests said no treatment just retest in 3 months time. I’ve been doing some research and was thinking of trying some OTC desiccated thyroid. Has anybody had any experience with Metavive? I’ve also bought some bovine thyroid from another company to try. Any advice much appreciated thanks.

Update: I have seen my GP today and she has requested a repeat of thyroid panel and if it’s still the same then she’s wants to start me on 25ug of Levo for 3 months see how I get on. I’m still not sure. Maybe I’ll try Levo first then NDT or glandulars after that if I don’t feel better. She did say most people do well on Levo but I’m still sceptical.

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SeasideSusie profile image
SeasideSusieRemembering

ockerdoc

Some members do well on Metavive, others find it doesn't help at all. Just so that you are aware Metavive is a thyroid glandular (not natural desiccated thyroid) and has no declared hormone content.

ockerdoc profile image
ockerdoc in reply toSeasideSusie

Thanks for your reply sorry I didn’t realise there was a difference I thought they were all desiccated thyroid. I know it doesn’t have any declared thyroid hormones and that’s why it can be sold OTC I believe. I don’t think I’d be able to get anything on prescription so this is my only choice right now until my TSH is at a level where a doctor will treat.

SlowDragon profile image
SlowDragonAdministrator

Were both these thyroid tests done early morning 9am latest to get highest TSH

with two tests with TSH over range and symptoms your GP could start you on a trail of levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Before considering taking anything recommend you get vitamin D, folate, B12 and ferritin levels tested

Do you currently take any vitamin supplements?

ockerdoc profile image
ockerdoc in reply toSlowDragon

Thank you yes I’ve checked B12 Ferritin Folate Vit D all were within normal ranges. Both thyroid tests were done early morning fasted probably around 09.30-10.00am. I take a vit D supplement eat a lot of grass fed beef, Brazil nuts for selenium, I eat pretty much a low carb diet apart from cheat days usually when I’ve had a glass of red wine which isn’t a lot these days. I’m actually going back to see my GP tomorrow so I might see what she says about Levo. I’ve read so many bad things about it though on forums that I was looking to go natural instead. I just don’t know which one is the best in the long term.

SlowDragon profile image
SlowDragonAdministrator in reply toockerdoc

please add actual vitamin results and ranges

How much vitamin D are you currently taking

There’s 2 million people in U.K. on levothyroxine, a very significant percentage do absolutely fine on it ….provided they are on high enough dose, test correctly and regularly and maintain optimal vitamin levels

With any autoimmune disease it’s always worth trying strictly gluten free diet

Get tested by GP for coeliac disease first

ockerdoc profile image
ockerdoc in reply toSlowDragon

Ok thanks yes i was thinking of going gluten and dairy free to see if that helps. My vit D was 69 Adequate 50-75 Optimal 75-200 B12 187 (145-569) Ferritin 236 (30-400) Folate 15.5 (8.83-60.8).Currently taking 4000 iu per day vit D.

SlowDragon profile image
SlowDragonAdministrator in reply toockerdoc

B12 and folate far, far too low

B12 so low GP should test you for Pernicious Anaemia before starting on B12 injections or daily B12 supplement if PA test is negative

Would expect you have some Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

If GP doesn’t prescribe B12 injections or supplements

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week or so

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

Effective B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

SlowDragon profile image
SlowDragonAdministrator in reply toockerdoc

How long have you been taking 4000iu vitamin D

ockerdoc profile image
ockerdoc in reply toSlowDragon

Great thanks for the advice I’ve been taking the vitD supplement for a few years but I do miss days here n there. I will see what the GP sais tomorrow otherwise I can have B12 injections from a family friend. I’ll check that supplement out as-well thanks you.

Litatamon profile image
Litatamon in reply toockerdoc

A lot of your symptoms do correspond with low b12. Is that family friend a medical professional? Only asked because although rare some can have an allergic reaction to forms of b12 via injection. You could take a benedryl 30 minutes before injection. Chances are very slim with these reactions, just letting you know.

Also do know that it is very common during the first couple of b12 shots, and beyond to feel worse before things improve. You could actually feel a combination of effects - relief on some, increase of others.. Even some new symptoms arising. Just so you're aware and know not to judge the efficacy of the shot, if this occurs.

To give it a fair go, you should do loading shots, about six over two weeks, before extending your dosage. NICE guidelines call for every other day shots if neurological symptoms are present, until no more improvement is felt.

I don't know what form you would be getting but some feel no difference between the various forms. But a few of us on the PAS section here feel cuckoo for cocoa pops with the mightily-pushed by the naturopath community, methylcobalamin. If it is methylcobalamin you might feel great on it - once again, just to be aware.

Here are some great concise

links -

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

ockerdoc profile image
ockerdoc in reply toLitatamon

That’s great info thank you I actually had a shot tonight and I feel pretty good to be honest I can feel a bit more energy about me. I didn’t realise there were different types I’ll ask her which shots she gives. She recommended one each week for 4 weeks then once a month. She’s a nurse. Yes I’ll defo give it a good go if it’ll help my symptoms of low energy in the long run. If I feel like this after each shot or better then happy days. Thanks again.

Litatamon profile image
Litatamon in reply toockerdoc

Wonderful news!

ockerdoc profile image
ockerdoc in reply toLitatamon

After that B12 injection I’ve had really bad nausea for around a week. it’s just beginning to go now. It’s very common apparently. But it’s not a pleasant feeling, it’s like vertigo but less severe. I don’t know if I want to carry on with injections if that’s how they make me feel. I might just have to eat lots of beef instead.

Litatamon profile image
Litatamon in reply toockerdoc

The issue at hand is you don't know if you have an absorption issue, correct? If you do have one, a whole country of beef won't do much. But if you do not have an absorption issue it will help. As will b12 sublinguals or sprays for that matter.

The body wakes up with the b12 shot if you had an ongoing issue.

Let me tell you about my body waking up. For about a 24 hour period between my second and third shot it was like I was being tasered every fifteen minutes. No dramatic words there. I had to literally pace my condo. I could not lie down, could not sit still, nothing. It was something I will never ever forget.

But I remembered what the people on this site had said about new issues appearing or a worsening of previous symptoms. And I pushed through and it left as quickly as it came. Am I suggesting you push through - no because it is hard to know when we do not have clarity on your issue.

But I had 80% of my symptoms (over thirty of them) leave in the first two months, many after loading doses. A ton of these symptoms were very serious and some I had had them for years. If I had not pushed through I would never have had that unbelievable outcome.

All the best to you.

Oh did you inquire whether you were given hydroxocobalamin or methylcobalamin?

ockerdoc profile image
ockerdoc in reply toLitatamon

Thanks for the info I’m tempted to carry on but I think multiple injections may make it even worse. It's hydroxycobalamin. I don’t know if one is worse than the other. I’m due to have a Vit D shot on Friday but the nurse has asked if I want to leave it because that can cause nausea also. Thanks again.

Buddy195 profile image
Buddy195Administrator in reply toockerdoc

Just checking you are not taking excessive selenium via Brazil nut consumption ockerdoc…. Each Brazil nut can contain 50-90ug of selenium (dependent on the selenium quality in the soil where it was grown). It is not recommended to supplement more than 100ug per day (unless you have symptoms of Thyroid Eye Disease, when 200ug is recommended for 6 months), as doses in excess of 400ug per day have been shown to be toxic.

ockerdoc profile image
ockerdoc in reply toBuddy195

Thanks yes I may be over doing it then I usually eat at least 5 Brazil nuts a day maybe more eek! I’ll have to stick to 2 a day then thanks for the info.

Delilahmy profile image
Delilahmy in reply toockerdoc

what are your b12 levels out of interest (and ranges)

ockerdoc profile image
ockerdoc in reply toDelilahmy

B12 is 187 (145-569)

Delilahmy profile image
Delilahmy in reply toockerdoc

that is still very low even though in range. Nice guidelines suggests that treat if patient symptomatic and every other day injections until symptoms improve. Pointless retesting once on b12 as will be elevated . Also supplement with methyl folate 5mg … as necesssary (check out as other member suggested - the pernicious anaemia site on healthunlocked)

cks.nice.org.uk/topics/anae...

Sally pachalock

youtu.be/OvMxJ6GRBNQ

and good luck

SlowDragon profile image
SlowDragonAdministrator

psoriatic arthritis is also associated with vitamin D, low B12, low folate and low iron/ferritin

J972 profile image
J972

Hi ockerdoc,

Sorry to hear you’ve been struggling. I have to say that your experiences (& results, to an extent ) mimic mine. I too was an incredibly active gym-goer, playing hockey on Saturdays, my body was strong and I recovered easily. Then the wheels started coming off…initially I put it down to lockdown and menopause then, late last year, I started to look at things differently and remembered all the times my blood tests were ‘borderline’ where my thyroid was concerned. I had no idea about the thyroid and it’s role but I’ve certainly become a lot more knowledgeable thanks to this website. My thyroid levels are similar to yours (plus I also once tested positive for antibodies so have Hashimotos) so haven’t received a formal diagnosis. I’ve therefore gone down the self-medicating route and am currently on Metavive 1.

If you look at my posts you’ll see that I recently asked for help increasing my dose from 2x Metavive to 3x; I was getting nasty side effects namely palpitations and diarrhoea. Through chatting with other members here I very recently started taking 3x Metavive *with my breakfast*, not on an empty stomach as widely recommended. I must say that this has been effective: my stamina has slightly improved, as has my ability to communicate coherently (always a bonus). Plus, my tongue now fits my mouth better and my face feels less ‘slack’. Weird but true.

I’ve still got some way to go especially in terms of joint pain and, as you mention, foot pain. I’d certainly like to have more energy and regain that sense of purpose that I once took for granted. I’m working very hard to optimise my vitamins and minerals and have also gone gluten-free, all based on advice garnered from this incredible website.

I feel as if Metavive has been a good ‘entry level’ treatment for me, which is not intended to diminish its usefulness. I personally find it very potent and think I’ll struggle to increase my dose further. My plan therefore is to give NDT a go, namely, thyroid-s. As SeasideSusie has already mentioned, metavive is a glandular supplement with no stated thyroid content. It’d be good to know what ratio of FT3:FT4 I’m taking. Thyroid-S offers that. That’s my thinking anyway. And, as I’ve mentioned, I don’t have a diagnosis therefore I don’t have a prescription.

So that’s my very-layperson’s account of my experience of self-treating my underactive thyroid. And it’s no exaggeration to say that I wouldn’t have taken that bold step without the support of this community. I feel in incredibly safe hands. All the best!

ockerdoc profile image
ockerdoc in reply toJ972

Hi J972 thanks for your reply much appreciated and sorry you’re going through this aswell. Are you in the UK? Can you buy the thyroid S online? I just don’t know which way to go at the moment. I think I’ll have more of an idea after I’ve spoken to my GP tomorrow. This community does seem helpful I posted on Reddit but didn’t get many replies. I know what you mean by sense of purpose. I used to have vigour to do so many things music sports reading now I just don’t have the energy it’s quite depressing really I just want to get back to my old self again.

ColdBanana profile image
ColdBanana in reply toockerdoc

Yeah you can buy thyroid-s online in the uk

ockerdoc profile image
ockerdoc in reply toColdBanana

ok great thank you.

J972 profile image
J972 in reply toockerdoc

Hello and you’re welcome.

Yes I’m in the UK. Many, many people on this forum order NDT without prescription from abroad. I will private message you with some details since forum rules prohibit us from discussing such details here. We’re also strongly advised to run any information about suppliers past one of the admin team here, to check whether they have any details of unscrupulousness (scam sellers).

I’d also echo what slow dragon had already alluded to, your B12 is less than optimum and there’s an excellent forum elsewhere on Healthunlocked called Pernicious Anemia - I suggest you head over there, too.

It’s certainly a minefield and the learning curve is steep but you’re in good hands here (is that enough metaphors?). Which is not to say that your GP won’t be supportive…..but experience shows that many of them are conditioned to diagnose and treat based on TSH levels alone, which is an inadequate metric.

ockerdoc profile image
ockerdoc in reply toJ972

Ok that’s great thank you and thanks for the info I’ll keep that in mind if I end up buying any then. I’m gonna get some B12 injections starting next week hopefully that’ll help my energy levels.

andyjs2 profile image
andyjs2 in reply toJ972

Hi, can you also private message me as well on how to get NDT without a prescription?

radd profile image
radd in reply toockerdoc

ockerdoc,

Welcome to our forum,

Yes, many forum members self medicate and share online sources by PM, but it would be prudent to achieve optimised iron and nutrients before going down that route. It can be a lonely journey self diagnosing as hypothyroidism is for life, and self medicating (even the glandulars) will alter your labs meaning possibly you will never get a formal diagnosis.  

Slow Dragon has given excellent advice regarding basic vitamins but I would also be adding a mineral blend and adrenal support which become compromised with inadequate thyroid hormone. 

Some of these nutrients are vital for good thyroid function such as selenium which the enzymes used for making, conversion and utilisation are made from. Selenium also neutralises the free radicals resulting from the making of thyroid hormones, and influences many other pathways. Modern intensive farming means much soil is depleted and it is thought safe to take a daily ongoing 100mcg supplement, and 200mcg if suffering undiagnosed hypothyroidism. 

You don't have thyroid antibodies which is great but eating clean and well to keep blood glucose levels within range will help reduce any chronic inflammation (which also negatively influences those thyroid enzymes). Sometimes these steps are enough to kick start a positive recovery, and especially given your symptoms and TSH isn’t corresponding with low thyroid hormone levels, it looks like you may have some pituitary —> thyroid signalling issue that may improve/reverse with optimised supports.  

ockerdoc profile image
ockerdoc in reply toradd

Ok thank you but isn’t a TSH of 4.7 and borderline low T4 already diagnosed as hypothyroid. Looking at Dr child’s YouTube channel he thinks subclinical hypothyroidism is basically hypothyroidism?

tattybogle profile image
tattybogle in reply toockerdoc

in NHS guidelines .... Two consecutive 'over range' TSH testsm taken 3 months apart (with fT4 still in range) is classed as subclinical hypo .

So yes, you already have that diagnosis ... but the diagnosis is not what gets you the treatment... prescribing Levo for 'subclinical' hypo is still at the discretion of the GP, and when TSH is under 10 it is based on consideration of other supporting factors such as the level of symptoms , whether TSH is showing a rising trend over time , how much above the ref range it is , timescale, etc .

Sub clinical with TSH 4.5 then 5.7 then 6 .9 is much more convincing than TSH 4.7 then 4.5 is .

If thyroid antibodies are present this gives them more reassurance that starting levo is the right thing to do .

Without them, and with TSH so close to range, your GP's will currently be unsure if prescribing lifelong levo is the right choice.

~ If you take metavive now , your TSH will go down and then you will not be able to get recognition from the NHS that you need a prescription , unless you come off it for long enough and allow your TSH to rise again (it could take many months) .

~ If you wait 3 months and retest as GP suggests , and TSH is still at this level or higher ,then you will have a much stronger case for being prescribed Levo officially...

ockerdoc profile image
ockerdoc in reply totattybogle

Right gotcha thank you 👍 so many things to think about. If she says retest in 3 months then maybe I’ll wait. Try n increase my nutrients go gluten n dairy free then see what comes up. If TSH is still high then treatment is the only option I think.

tattybogle profile image
tattybogle in reply totattybogle

NHS thyroid guidelines nice.org.uk/guidance/ng145/...

(you are not considered to have overt 'hypothyroidism' until fT4 is below range, while fT4 is in range it is classed as 'subclinical hypothyroidism' )

"Treating subclinical hypothyroidism

1.5.2 When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

HowNowWhatNow profile image
HowNowWhatNow in reply toradd

I should have read your post before I commented!

wilson123456 profile image
wilson123456

Hi there , im also a 50 yr old and have hashimoto's for the past 10yrs and boy its a struggle to keep this small organ under control - Personally GPs dont do a full thyroid panel and antiobiodys which is critical to see what the thyroid is performing and can get confusing with all the markers - i do genova testing and ive just done the Elemental analysis test to see if i have any heavy metals present and 8 markers on the nutrient elements like , selenium magnesium zinc which help natural hormone production. Im taking prescribed T3 which helped a lot 20mg with 75mg thyroxine my antiobiodys were in the 1000s but now dropped to 300 TPO and TG . So many other factors i have not taken in as i didnt want to go on and on but i hope this helped a little

ockerdoc profile image
ockerdoc in reply towilson123456

Thank you yes I’m gonna definitely keep track of my nutrient markers and try n get them to optimum levels. I really didn’t realise I was so deficient because they come within normal levels . I do eat a lot of beef which makes me wonder if I need to be taking Betaine HCL to get better digestion. I’m thinking I may have low stomach acid.

JAmanda profile image
JAmanda

remember what you read on forums is often those who’ve got issues - for the vast majority I think Levo works perfectly fine. If I were you I’d start there and see how you go.

ockerdoc profile image
ockerdoc in reply toJAmanda

Thank you I realise forums are just a snap shot and probably not the whole picture but it’s just difficult reading so many negative reviews of levo. I’ll see what the GP says today when I present her with my results.

JAmanda profile image
JAmanda in reply toockerdoc

I got Levo on similar results. Levo is basically just replacing the lack. It worked ok. I added in lio mainly as Levo made me so constipated. Getting b12 folate vit D high in range has biggest impact for me. I do wonder what ndt is like - so will be happy to hear your experience.

tattybogle profile image
tattybogle in reply toJAmanda

you and i had very high thyroid antibodies though Jamanda.... Ockerdoc doesn't have any .. so GP's will be far more cautious about prescribing until they have stronger TSH evidence to back up the decision .

JAmanda profile image
JAmanda in reply totattybogle

ah ok. You’ve got a good memory!

Mag999 profile image
Mag999

your results are almost identical to mine and my gp readily agreed to trial levothyroxine. As long as clinical picture fits you have a good case. My difficulty is getting them to raise the dose as 75 mcg suppresses my TSH to 0.05 and my t4 is now near top of range but as t3 hasn’t moved I now have to argue my case for raising the dose and if that doesn’t work to the source t3 as it looks like I convert well

You will get a trial but that’s only the start!

ockerdoc profile image
ockerdoc in reply toMag999

Thank you how do you feel on the levo any better? Could you add a glandular or NDT to help with the T3?

Mag999 profile image
Mag999 in reply toockerdoc

based on advice I’ve had on the forum I’m doing a dose increase on levo, retesting and if t3 still not moved I will find somewhere to get t3. Initially I felt better but I’m more than 6 months in and the energy levels are falling and joint pain is back so I’d like to see how I feel if t3 is optimal.

Decant profile image
Decant

Welcome to the forum ockerdoc! The advice given by the admins is 100% superb. Amazing and freely given; however be aware that most thyroid sufferers are women (80:20) and the excellent advice may naturally omit male specific factors.

I'm a 55 yo man. My story is different to yours (hyperthyroid, zapped now on T4 and imported T3) but I wanted to suggest getting your testosterone tested as low levels (even supposedly borderline normal) may cause your symptoms (energy, mood, etc). Obviously this predominantly a male thing.

My Testosterone levels are low but not low enough for the NHS to treat hypogonadism (and their protocol is crap from what I understand). It's a bit of a minefield of crap science and gym bros abusing T, but it's worth looking into IMO. T levels naturally decrease as we age. Official T ranges have been decreasing year on year. I'm considering going private but it's for life once started and quite expensive, so I'm trying natural interventions first. I've stopped eating and drinking from plastic (especially once heated), strength training, diet, reducing stress, better sleep).

NHS are unlikely to test your Testosterone. The key number is your free T, not the easy total T.

I'd also suggest that "adequate" vitamin D is different to "optimal" and it seems to be implicated in a huge range of conditions. If you have 2 hours, watch this well researched, evidence based, fascinating video youtu.be/5YV_iKnzDRg which is reporting that vitamin D is a marker of good health, but only a part of the equation: we need sunlight which gives vitamin D and large amounts of melatonin, a super powerful antioxidant.

If you can afford it, then I recommend getting tested privately. I've used the Medichecks Ultimate Performance (medichecks.com/products/ult... and it covers everything you need. £159 today plus cost of getting the blood drawn (Google for local phlebotomist to do it more cheaply).

** Do make sure you follow the testing protocol recommended on this forum **

Finally (!) I wrote a blood tests calculator website to visualise results within their ranges and then allows you to paste the results in a standard format into this forum. Pinned by the admins and tested by many members. thyroid.chingkerrs.online/

Good luck!

ockerdoc profile image
ockerdoc in reply toDecant

Thank you yes I did test these and my free T levels were 0.341 (0.2-0.641) not massively high I know but still within normal range. I thought of TRT myself but I’m just not 100% convinced yet. I’ve bought another vitD supplement which is with coconut oil and is better adsorbed apparently. I do try n get out in the sun whenever I can but in UK it’s difficult! :)

Decant profile image
Decant in reply toockerdoc

Ok! My last (January) was 0.22 (0.16-0.47).

Do make sure your vitamin D3 has vitamin K2 as well. The K2 ensures and calcium released good to your vibes where you want it, not into your arteries (atherosclerosis).

My libido is non-existent really. Just put that down to my wife and I getting older and work frustrations but maybe there's more to it. I started ADHD meds last month (DX'd 18 months ago) to try and get more focus.

ockerdoc profile image
ockerdoc in reply toDecant

Thank you yes my libido is rock bottom it’s probably the worst part of this for me. Along with lack of energy and focus. I just wonder whether levo or NDT will bring it all back. Probably going to be a mixture of nutrition, training and medication I think. But probably never gonna be back to what it was like in our 20s! :)

Decant profile image
Decant in reply toockerdoc

More to my story. I was initially on T4 (18 years ago). I felt off, much like you describe. Stresses: faster died, new baby, work. I managed to get some T3 full GP - it helped. Then T3 price shot up and they ended my "trial". So I started buying NDT from Thailand. That also worked (perhaps better than T3 but I didn't regularly treat or take notes). Then NDT price shot up around lockdown time. So I'm finally on 125mcg T4 and 15mcg T3 bought from abroad. With everything I'm doing, the find weather and being paid to not work right now, then I'm doing really well.To add to your list I'm also doing internment fasting and sauna bathing. I'd heard very good things about them, but not anything thyroid specific.

I had to learn to take control of my own health and take the white-coated little gods from off their pedestal. They cannot care enough. The medical profession has to stick with rigorously proven (ha ha) treatments, whereas we are free to look wider. Gp's historically listened to symptoms but now they mostly rely on limited blood tests like TSH. So many (mostly women) are suffering terribly with this condition.

ockerdoc profile image
ockerdoc in reply toDecant

Glad you’re feeling good at least that’s a positive. I do sauna too I bought one and put it in the back garden it’s amazing I use it at least 4 times a week. I also fast alot too. I actually did a 2 week water fast 4 years ago which was great. Wish I could do that again to lose some weight but the way I’m feeling right now I don’t think it would be a good idea. I have done keto aswell quite regularly so I might try that again as I’ve heard it can help the thyroid alot. Although I can’t seem to lose any weight these days when I’m on it whereas it used to fall off me a few years ago. I definitely gotta make some changes, I have 3 kids to look after aswell so I need my energy! :)

Decant profile image
Decant in reply toockerdoc

Sounds like you have those bases covered.

One last thing, GP's used to prescribe based on symptoms, not blood test results. As you have many symptoms and your blood results are close to treatment levels, then I think you're in a good place to push/bully your GP to at least trial some levo. Hopefully. Don't let them bamboozle you with "science".

Litatamon profile image
Litatamon in reply toockerdoc

Decant as well.

I found this out by accident, about aloe vera juice & libido. See screenshot below. Note you do not drink this like juice. It can be hard on the kidneys. Some readings say not to drink it at all, some say a cup a day is fine. I drink probably a tablespoon or two. So research.

Also, I found vitamin d shots increased libido. Not pills, not sprays but when I took shots. Obviously that was probably about efficacy for me, if they were at equal amounts.

Once again any high amount of vitamin d supplementation must be monitored and tested, as it can be hard on the kidneys and impact the heart (calcification??).

Also this Costa Rican staple is a blood builder and can positively impact libido as well. (Also stamina in the gym.) costaricannoni.com/carao-fr...

All the best to you both.

Aloe Vera information
ockerdoc profile image
ockerdoc in reply toLitatamon

Thank you I’ll definitely check this out.

Cup-cake7 profile image
Cup-cake7 in reply toDecant

...yes hormones both sexes I'm sure is a big influence on the T changes ( & women too can benefit testosterone). I began combined hrt quite late on, just to feel alive actually lol, and TSH shot up from 4 to 7, - - Showing that your Hormones are so finely tuned when young & healthy, it can be a thing to find your 'balance' when older. And hopefully giving your bones heart & mind a helping hand for advancing years

Lots of best wishes

ockerdoc profile image
ockerdoc in reply toCup-cake7

Thank you 👍 yes we don’t realise how great we had it when we’re young. You definitely have to make some major changes to optimise your health as you get older I’m realising.

Cup-cake7 profile image
Cup-cake7 in reply toockerdoc

didn't mean to be negative and maybe it's just needing little tweak. :)

london81 profile image
london81

it helped me and allowed me to reduce my ndt a bit ( as susie says it’s not got declared hormones, so it’s a supplement not medication)

TWATTOX profile image
TWATTOX

metavive 2 works for me,and I’ve just had a blood test that shows slightly high t3.I’m going to reduce my dose a bit..

ockerdoc profile image
ockerdoc in reply toTWATTOX

Thats great good to hear glad it’s working for you .

Miffie profile image
Miffie

You will very probably benefit from taking ndt or Metavive. The only downside to taking control of hypothyroidism by self sourcing pre diagnosis is that you will never get a diagnosis if results show improvement. If you take anything containing T3 then TSH will drop, not what you need for NHS diagnosis. At one point after 50 plus years of NHS treatment I moved to entirely self sourced. Big mistake, I was unable to get Thyroid S. Went to GP for levo to help out and was refused. I had to hold until private bloods showed a TSH they’d look at at below range fT4 and fT3. This took several months as I always had low TSH prescription finally reinstated but on a ridiculous dose to titration up. I now use levo with ndt top up . Managed to get an endo to agree this was acceptable and tell GP all good with it. Took months and a decent understanding of thyroid issues. After sixty years I still have regular ‘discussions’ with assorted aGPs at surgery. In your shoes Id hold off until next bloods in 3 months time. As tattybogle said a raised TSH above previous levels is more convincing . Good luck

ockerdoc profile image
ockerdoc in reply toMiffie

Thank you yes I’ve now seen my GP today and she has offered to start me on Levo if the repeat blood test is the same as my previous 2 which I’m pretty sure it’s going to be. I may just just hold off on the glandulars/NDT for now and go with the Levo n see if I improve.

tattybogle profile image
tattybogle in reply toockerdoc

next blood test

~ get an early am appointment ,, even if it means waiting a week or so for an appointment at the right time . ( tell them you can't make appt's after 9.30am due to work of something)

~ do not eat breakfast before you go .

( this gives you the best chance of catching your TSH at it's highest level for the day.

TSH is highest in the middle of the night and falls gradually to it's lowest about 1 -3pm.

and eating breakfast can lower it by up to 30% in some people but not in others, but just to be onthe safe side .. have your breakfast after the test) .

If someone tries to give you an unexpected TSH test at 1pm ... hide your arm and run away .

ockerdoc profile image
ockerdoc in reply totattybogle

🤣 thank you yes the receptionist offered me an 11.00am appointment which I refused and got one for 08.45am instead ! Fingers crossed it’ll be the same. Is there anything I can do? like eat a lot of crap for 2 weeks! 🤣 Thanks for the info anyway I’ll post my results in due course.

tattybogle profile image
tattybogle in reply toockerdoc

No ... it's more or less impossible to fiddle TSH.. and a lot of the things that do affect it would lower it rather than raise it , so would be counter productive ... eg severely limiting calorie intake for a few for weeks might lower it.

in reply toockerdoc

Coffee, ockerdoc: ncbi.nlm.nih.gov/pmc/articl...

"The negative impact of some nutrients on levothyroxine absorption has been demonstrated since 1977 (37). Most of nutrients (e.g. soy, fiber-enriched alimony and coffee, etc.) (6, 38, 39) specifically bind oral thyroxine at the intestinal level."

Also sleeplessness.

And exercise: flipper.diff.org/static/fil... “In conclusion, our findings indicate that intensive interval exercise results in a suppressed peripheral conversion of T4 to T3, as compared to a comparable amount of steady-state, sub-maximal endurance exercise. This occurrence implies that a longer recovery period is necessary for thyroid hormonal levels to return to normal following intensive interval exercise to allow for any transient hypothyroidal state that may develop to abate."

healthunlocked.com/thyroidu.... EFFECTS OF EXERCISE ON THYROID. “After a run fT4/ fT3 go up from your 'normal'. But 12 hours later fT4/ fT3 will have gone down below your 'normal’.

tattybogle profile image
tattybogle in reply to

just to clarify this , Dioryth

Your first link is relating to reduced absorption of levothyroxine from tablets.. (which would raise TSH eventually due to a lower dose being absorbed via the gut) .

but taking coffee/ food before test will not raise the TSH level when the T4 is coming from the thyroid itself .

ockerdoc hasn't got a diagnosis yet/ not on levo ... and is currently looking for highest TSH to get a diagnosis . Having Coffee /food before a morning TSH test will actually LOWER the TSH in those circumstances which is why fasting/ early a.m tests are advised for TSH ( ie. no breakfast before test) ..... see this :

"Conclusion ..... Compared with the fasting state, the TSH level at 2 h after the calorie intake was decreased by about 30%, which might influence the diagnosis of subclinical hypothyroidism. " bmcendocrdisord.biomedcentr...

So having breakfast/ coffee before test makes getting a diagnosis LESS likely.

The other 2 link relate to studies which show effects of acute exercise on fT4 / fT3 levels .. but this caused no immediate change in TSH levels ... the diagnosis of primary hypothyroidism is initially made based on TSH level , so using acute exercise to try to influence TSH result for diagnosis won't work.... although it might give lower fT4 levels if the timing was right .

ockerdoc profile image
ockerdoc in reply to

Thank you 👍 I wish I even felt like going for a run at the moment!!

Stourie profile image
Stourie

hi, just to say that a starting dose of levo at 25 mcg is normally for the very young or elderly with heart problems. 50 would be a better starting dose as 25 will probably be too low a dose and you might feel worse. Jo xx

ockerdoc profile image
ockerdoc in reply toStourie

Thank you I’ll try and speak to the GP about it but I doubt she’ll move up to 50. Maybe after 6 weeks if my TSH isn’t low enough.

HowNowWhatNow profile image
HowNowWhatNow

A high TSH can be sign / symptom of inflammation in the body. One thing that promotes inflammation is gluten.

I say this from experience because my son had a persistent borderline hypo TSH reading from the ages of 18 mths - 5 years.

Cutting out gluten, which we did to resolve gut or bowel symptoms, also immediately brought his TSH level down. It also resolved his iron deficiency anaemia and about 29 other symptoms which we didn’t expect to go.

He is not coeliac, when tested. (He has low IgA levels, so has had to have multiple tests for this, but broadly speaking is not coeliac). Gluten intolerance is what he has and in our experience the symptoms are pervasive and reduce quality of life quite dramatically. His gastroenterologist had mentioned this (gluten intolerance also having major symotoms) to me, which is why we started him on the diet.

Do look at what you can do to reduce inflammation, see if it helps to reduce the symptoms and the numbers. I say this because if you do too many things at once, you never know which one of the changes was the cause of the benefits / improvement.

ockerdoc profile image
ockerdoc in reply toHowNowWhatNow

Thanks for the info i'm about to go gluten and dairy free as from tomorrow so we'll see how it goes fingers crossed :)

Tlflom profile image
Tlflom

Wow, so much to unpack. I say there are multiple dx going on. TSH seems high, I would be knocked off my feet with a TSH OF 4.5. It is inverse to thyroid production. If it were me, I say yes to levo to increase the energy level.

Next, I would tackle gut health. We have recently learned that either covid or the vax wipes out bifidobacillus, which is very important for too many reasons to post here. The data on the study by a gastroenterologist will be published soon. Some of your issues might be exasperated by this. FYI, just because a product label claimed it has bifidobacillus, does not mean that it does, sadly. The same gastro doc ran them through her lab. 3 out of 12 did not. Making yogurt or fermented foods is the only reliable way.

The pain in your foot could be a side effect from a statin. My husband had to switch to another one for pain and leg cramps. I went off statins for a week. The pain was gone in 2 days. I found a lipidologist who could listen. He switched me, then we agreed after labs again, I would take it 4xs a week. No more pain in my foot AND cholesterol under control. I fired my PCP / GP and moved on to a better one.

We shall look forward to you updates. Best wishes on your journey.

ockerdoc profile image
ockerdoc in reply toTlflom

Thanks for the advice much appreciated yes I think I’m going to try the Levo and see how I go. I did have stomach issues after my first COVID infection funnily enough. I’ve been drinking kefir for the last 4 months which has really helped everything, I recommend it to anyone looking to improve their gut health and overall health. I don’t take statins I think it’s probs it linked to the hypothyroidism, foot pain is common apparently. Thanks again :)

Oh dear, tattybogle, forgive me for trying to help a fellow sufferer (ockerdoc). But did I say to eat and drink before a thyroid test?

Nope, I didn’t. How remiss of me.

Reason I suggested coffee to ocerdoc, is that coffee affects cortisol which then affects the thyroid.

Oh, and personal experience when-I-was-not-taking-thyroid-medication.

-Where I had higher tsh levels after one blood test with high consumption of coffee the day prior, compared to a tsh test with little coffee the previous day

(with all other test conditions being the same before taking both thyroid blood tests at 7am after fasting for 12 hours).

And your further refuting of the exercise link I posted from another healthunlocked post (healthunlocked.com/thyroidu...

where it said, "But 12 hours later fT4/ fT3 will have gone down below your 'normal’."

But just to reiterate, tattybogle, here are some other links backing up exercise can have adverse effects upon thyroid function and therefore giving a higher tsh reading:

flipper.diff.org/static/fil...

and,

healthunlocked.com/thyroidu...

Apologies, ockerdoc, if I have misled you in any way.

TiggerMe profile image
TiggerMeAmbassador in reply to

I've not really kept up with this thread but if you want        tattybogle to respond you need to reply to her message or tag her in with @... before name for her to know about your reply 🤗 without reading the whole thread I can't tell if you are being snippy or helpful🤷‍♀️either way I've kicked it down the line for Tatty to deal with as she sees fit 🙃

in reply toTiggerMe

Was simply enlarging upon my statements to ockerdoc, in case there was any misunderstanding on his side due to tatty's comments, Eeyore100.

Perhaps you should read the entire exchange, 'cos I wouldn't want anymore misunderstandings.🤷‍♂️

TiggerMe profile image
TiggerMeAmbassador in reply to

Righto 😉 when threads get this long they are really hard to follow with the way it jumps about so thought I'd just 👋  tattybogle in case you were hoping for a response

We don't mind a bit of misunderstanding and heated debate... keeps things interesting 😅

Eeyore, do you have any useful advice for ockerdoc.

TiggerMe profile image
TiggerMeAmbassador in reply to

Luckily I stumbled across this as it wasn't aimed at me and you forgot the @and use full name   Hidden to activate the tag ( it needs to turn blue to work) happy to throw my twopenneth in...

Based on the original question (I've not read through all the comments so this may already have been mentioned)

I've no experience of Metavive but it has no declared levels of anything so it is a try it and see supplement.... I'd stick with Levo and hope it works for you 🤞many people do well on it, it is just us super special folk that need a little extra help 😬

Have you checked your testosterone levels? When your thyroid starts to struggle it often means your other hormones will drop and add to feeling off in other insidious ways 😕

A starter dose of 25mcg is likely to make you feel slightly better for a week or two and then a whole lot worse... why have they started you on a child dose? Do you have heart issues?

At a spritely 51 you would expect at least 50mcg with a review 6-8 weeks on... not 3 months! As you are going to be titrating up each time until they are happy with your TSH... this is when you get a private blood test to see where your actual fT3 & 4 are... hopefully Levo does the trick, if not the next battle commences 🤗

in reply toTiggerMe

Perhaps you should address your reply to ockerdoc, Eeyore100.

TiggerMe profile image
TiggerMeAmbassador in reply to

The original poster will receive all reply's whoever they are sent to 🤗but you wouldn't have received it if sent to him, like you did when trying to communicate with me I only happened across it

You'll get the hang of it 😅

Woops, just realized I have aged him by a year! Soz Ocker you'll get there🙃

in reply toTiggerMe

I believe sticking to replies to ockerdoc and his question is a good idea, rather than repeatedly giving unsolicited advice.

TiggerMe profile image
TiggerMeAmbassador in reply to

I think you are confusing me with someone else? I've not been involved in this post until I flagged up your stray message to Tatty?

I have now responded to Ocker's original post at your request 🤷‍♀️

Thought I was being helpful explaining the slightly odd way this forum works if you are expecting a reply from someone specific?

in reply toTiggerMe

Definitely not confusing you with anyone else, Eeyore100. How could I when you keep repeatedly giving me unasked for advice (plus, replying directly to me with advice for ockerdoc).

TiggerMe profile image
TiggerMeAmbassador in reply to

🤐🤗

ockerdoc profile image
ockerdoc in reply toTiggerMe

Thanks Eeyore yes I’ve tested my testosterone and when my T4 was in the middle it was 19.5 then my next test the T4 was in the lower quadrant of the range the testosterone level had come down to 14.5 which is still within normal ranges. I don’t have any heart issues I’m a healthy 51 I like to think. I used to exercise a lot obviously not so much theses days. If she doesn’t raise it to 50mcg then I’m gonna have to buy my own from somewhere.

TiggerMe profile image
TiggerMeAmbassador in reply toockerdoc

That is useful information showing the correlation

It shouldn't be a problem to get it raised but you might just have to push them along a bit as they seem to have little clue quite how debilitating it is to be undermedicated.

If you resort to buying your own it will cause an issue at the next test with them... personally I just increased the dose myself and told them I had and requested they upped my prescription as I was going to run out! Crazy that we have to use these tactics but they really haven't got a clue.... good luck, we are here for you 🤗

Realize this is an old post... How long have you been on it now and how are you feeling?

ockerdoc profile image
ockerdoc in reply toTiggerMe

I’ve been on it two weeks now I’ve just recently posted actually and had some replies. Feel worse at the moment struggling to exercise backache constipation low resting heart rate. I really think 50mcg is the right starting dose for me as I’m 14.5 stone. I could easily just take 50mcg a day now until Monday couldnt I and then get a fresh prescription when I see her. Do you think that’s reasonable?

TiggerMe profile image
TiggerMeAmbassador in reply toockerdoc

Yes, absolutely up your dose if you have enough, they don't tell you how awful it is likely to make you feel to start with until you get your dose up they start blaming it on other things 🙄

I would suggest taking half morning and half bed time to maximise absorption and get the most out of such a meagre dose, you have all the classic symptoms as your body slows production, no danger of going over as for your size you will likely need treble this amount to fully replace.

You will get a feel for it and know when you need to raise it again but equally don't rush it as your body needs time to adjust 🤗

I'll go take a look at your new post... sorry I kind of got dragged into this old one 😬

ockerdoc profile image
ockerdoc in reply toTiggerMe

That's great thanks Eeyore I’ll take my first 25 tonight then 👍🤞

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