A wobbling thyroid and what to do about it ….

[awillis]

Hello and thanks for all the great info on this site….

I’ve been struggling with quite dramatic hair shedding for at least the last year. I’m lacking energy , not very motivated and have muscle aches just walking up the stairs.

Around May (this year ) was the first time I’d experienced my eyebrows falling out- it started with the right one , then about a month later the very centre of the left one had a missing section and then my eyelashes started to thin too. I had a thyroid test 23.7.24 , here are the results:

TSH 5.56 mIU/L (0.27 - 4.2) 134.6%

Free T4 (fT4) 16.6 pmol/L (11 - 23) 46.7%

Free T3 (fT3) 3.7 pmol/L (3.1 - 6.8) 16.2%

T4:T3 Ratio 4.486 

Thyroid Peroxidase Antibodies (TPO) 9 IU/mL (≤ 34)

I decided to concentrate on upping my ferritin as a blood test in April showed it was quite low at 39.6 ng/ml.

I also read that iodine was important for the thyroid to function properly so I supplemented with that too. I bought an amino acid supplement too and I hoped this would help my thyroid to get back on track and I think it did as over the summer my eyebrows thickened up a bit and I felt more energetic.

Then in October my eyebrows started to fall out again, first the left one then a month later a chunk out of right centre one. I tested my thyroid again 31.10.24, here are the results:

TSH 5.71 mIU/L (0.27 - 4.2) 138.4%

Free T4 (fT4) 16.7 pmol/L (11 - 23) 47.5%

Free T3 (fT3) 3.6 pmol/L (3.1 - 6.8) 13.5%

T4:T3 Ratio 4.639 

I decided to take Metavive 1 - 6.11.24 to 19.11.24 1 capsule only (40mg), then upped to 2 capsules 20.11.24 to present. When I upped to 2 capsules I started to feel a little more energetic and generally more positive. After doing lots of reading on here I opted for the Blue Horizons thyroid gold test, paid for a blood draw too, please see results :

TSH 1.65 mIU/L (0.27 - 4.2) 35.1%

Free T4 (fT4) 15 pmol/L (12 - 22) 30.0%

Free T3 (fT3) 3.6 pmol/L (3.1 - 6.8) 13.5%

T4:T3 Ratio 4.167 

Thyroglobulin Antibodies (TgAb) 16 IU/mL (≤ 115)

Thyroid Peroxidase Antibodies (TPO) 12.7 IU/mL (≤ 34)

C-Reactive Protein (CRP) 0.6 mg/L (≤ 5)

Folate - Serum 15.356 ug/L (8.83 - 60.8) 12.6%

Vitamin D 97 nmol/L (50 - 200) 31.3%

Ferritin 99 ug/L (13 - 150) 62.8%

Magnesium  0.9 Nmol/L (0.7 - 1.0) 66.7%

Total T4  85.3 nmol/L (66 - 181) 16.8%

I have some questions , if you could help I’d really appreciate it 😊

1. Should I be worried that my free T 4 has lowered to 15?

2. It looks like I struggle to convert T4 to T3, I’ve read alot of posts on here where people start treatment with T4 only first (Levothyroxine) - is that because if the Ft4 goes up then the ft3 might also go up? I’m wondering why t3 is added later ?

3. Is the aim to get TSH 1-2 and FT4 and Ft3 to 50% through the range?

4. Do some people have success with only using the metavive supplement - do they get their thyroid back in range?

5. would I be better to opt for an NDT brand like armour than the metavive supplement ?

(Through a private doctor)…

6. Should I perhaps supplement my Folate and Vit D to get them more optimal ?

7. I stopped Hrt at the end of June this year - could that be contributing to my thyroid wobbling ?

I realise this is a really long post , apologies for that - I would really appreciate any advice . Thankyou so much 😊

[Regenallotment Ambassador]

hello,

Well done on your ferritin,

I haven’t tried glandulars and just went with Levo and much later added a little Lio.

1. Yes that low FT4 will make you feel awful, I know that stair climbing through sludge ache feeling.

2. Probably but try to raise FT 4 first, folks are often in such a hurry and don’t get to the optimal T4 before adding T3, obvs different if you try NDT ( I haven’t).

3. It’s individual but I need TSH under 1, FT3 FT4 over 75% with iron and Vit D over 100 and B12 over 1000.

4.-5. I can’t answer

6. Definitely 👍

7. Possibly, I stopped HRT when I had my thyroid diagnosis as I had been misdiagnosed with perimenopause. I stayed off HRT for the last 3 years but have just restarted. If you have been exhausted then your adrenals have been under pressure and all endochrine functions affected in some way, in fact all cells and organs affected in some way.

Any changes to thyroid replacement and HRT will need 6-8 weeks on a stable dose without changes to level out with a bit of feeling good-worse-better in between . Hang on in there.

Take care recovering it’s a long road. 🤗

[awillis in reply to Regenallotment]

Thankyou , that’s really helpful 😊

[Noelnoel in reply to awillis]

4. Do some people have success with only using the metavive supplement - do they get their thyroid back in range?

Yes, I’ve been taking Metavive for 6 years and have had success with it but it’s taken a while partly because my adrenals and core nutrients needed more support than I realised and partly because my endo was clueless. Also, to remain available OTC the hormone content cannot be declared so it’s a very much a watch and wait process before each dose raise, as is all replacement treatment

I like that there are two types to work with; porcine and bovine. This allows me to fine-tune my dose because with each, the hormone content ratio is different

5. would I be better to opt for an NDT brand like armour than the metavive supplement ?

They work in the same way but I chose Metavive because it was excipient-free and I had the guidance of Dr Peatfield and at the time NDT was getting a lot of bad press for being unreliable because availability was becoming an issue and formulas were changing but I believe the situation is more settled now. Since starting Metavive it too had a formula changed when ribonucleotides were added to allegedly improve performance but if it’s made a difference, I haven’t noticed

If cost is a factor I can’t advise because I have no idea of the price of NDT

[awillis in reply to Noelnoel]

hi Noel Noel, Thankyou for replying - that’s really great to know you’ve had success with metavive. May I ask how you went about increasing your dose and do you use a mix of both porcine and bovine ?

I am using 2 capsules of metavive 1 at the moment and feel ok ….

May I ask what work you needed to do to help your adrenals pls? I have a book arriving today about adrenals so I’m looking forward to reading that…

Thankyou for taking the time to reply

😊

[Noelnoel in reply to awillis]

Hi

Before seeing Dr P I’d already done a cortisol test which determined my adrenals needed help so I started with Adrenavive ll (cortex only) for two weeks then began Metavive, increasing only when each raise had properly settled and it felt right to do so. This would be anything between 10-15 days; it’s different with levo. Core nutrients were also in bad shape so I began supplementing

After he retired I managed things myself and was doing reasonably well until an endo became involved and made a mess of everything. It took me quite some time to recover but I’m ok now

Along the way there were times I was impatient to get where I needed to be and went overboard with dosing and became horribly overmedicated. After a good talking to myself and with several words of advice on here I accepted that I’d just have to slow down

Anyway, long story short, I experimented with bovine and found that a combination of both worked better for me because my FT3 kept going over range with porcine alone

Nowadays, I take half an Adrenavive capsule each morning and a combination of 3 Metavive capsules in varying strengths split over morning and evening. FT3 and 4 are a tad high and will need attending to soon

Apart from the endo debacle I have felt consistently well

According to the labs you’ve provided most things look reasonable but you can see there’s room for a good deal of improvement in your thyroid numbers, bearing in mind as far as numbers are concerned, wellness figures are different for everyone with some feeling perfectly fine with both free around 50% and others needing permutations of everything in between. I need both of mine to be much higher but no one knows what their optimal level is until they find it. This takes patience, good guidance, support and experimentation

Good luck

[humanbean]

It looks like I struggle to convert T4 to T3, I’ve read a lot of posts on here where people start treatment with T4 only first (Levothyroxine) - is that because if the Ft4 goes up then the ft3 might also go up? I’m wondering why t3 is added later ?

People usually start on Levothyroxine (T4) because that is what doctors prescribe, and if anyone has to rely on doctors for their thyroid hormones that is what they get supplied with. Many people do very well on T4 only.

If people believe that they need T3 it can be a huge battle to get prescribed it, and the reaction of some doctors to such requests can be quite unpleasant.

Anyone who buys T3 or other thyroid hormones on the web has to cope with the following possibilities :

1) They may be supplied with nothing i.e. their money is stolen.

2) They may be supplied with fake pills, and depending on what they have been made with the pills could be dangerous or useless or both. And obviously money is lost too.

3) Online suppliers have a habit of disappearing without warning. The US government has a habit of bringing down suppliers who sell to the USA of any prescribed drugs, usually by making sure they can't get paid.

[awillis in reply to humanbean]

Thankyou , something to think about for sure 😊

[pennyannie]

Hello AWillis and welcome to the forum :

Did you try first to get some help through the NHS and do you have a diagnosis of anything else ?

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin _ a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

A euthyroid ( normal functioning thyroid ) would see a TSH at around 1.20/1.50 with a T4 at around 50% through its range and a T3 tracking just behind at around 45% through its range.

Years ago you would be diagnosed as hypothyroid when the TSH tipped over 5 - and have been prescribed T4 - thyroid hormone replacement - which is the first treatment option we are all prescribed on the NHS and T4 works very well for around 70% of all who take it.

Hypothyroidism is a life long chronic health issue and you will be on medication for the rest of your life and if diagnosed on the NHS all your medications for everything are then exempt and free of charge going forward.

Once on T4 thyroid hormone replacement we generally feel best once the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70% through its range.

The 2nd option if T4 alone does not resolve your health issues is to consider adding in a little dose of T3 - Liothyronine - to restore T3/T4 hormonal balance : T3 is the active hormone and said to be around four times more powerful than T4.

The last option is the most expensive treatment option is Natural Desiccated Thyroid which is the original successful treatment for hypothyroidism for over 100 years but I very much doubt you will be prescribed this on the NHS as a new patient - I failed back in 2018 and I'm post RAI thyroid ablation - and now buy my own NDT and manage myself.

NDT is derived from pig thyroids, dried and ground down into tablets referred to as grains with each grain containing trace elements of T1. T2 and calcitonn + a declared measure of T3 and T4 in each tablet and a medically graded Prescription medication and used in most counties , one way or another, in the World.

Metavive is also derived from the pig thyroids - but with no known measured content and why it is an Over the Counter easily available supplement that does work very well for very many people.

Currently the NHS rules need the TSH to be over 10 before a diagnosis is made - unless you have over range thyroid antibodies and / or an understanding doctor - who treats symptoms and knows that hypothyroidism generally starts creeping up on people when the TSH goes over 2.

I just wonder if you hadn't started taking the Metavive would we now have a TSH over 10 ?

I know it is ridiculous how ill one has to be before being acknowledged that you have a thyroid health issue.

To optimise your thyroid hormone conversion you also need optimal core strength vitamins and minerals especially those of ferritin, folate, B12 and vitamin D - and your results are looking ok - though I can't see a B12 reading ?

I now aim to maintain my levels for ferritin at around 100 - folate at around 20 - active B12 around 125 ( serum B12 500++ ) and vitamin D at around 125.

Your thyroid antibodies are not o/range - though these can wax and wane throughout your life - and we only need one positive reading here from anytime - to tick this box - and the fact that you are loosing your hair maybe good enough for some sympathetic doctor - somewhere.

I hope this all makes some sense and I've answered your questions - which ever way you go - treatment is life long and a big commitment if self medicating - or going private with most expensive treatment option - and personally I think I would try the NHS first - as who needs the stress of self sourcing in these uncertain times.

[awillis in reply to pennyannie]

Thankyou pennyannie, you’ve given me lots of great info and lots to think about. 😊

I think I am leaning towards NDT - I don’t think I’ll get anywhere with my nhs doctor especially as my thyroid is dipping out of range and then back into normal range - I think I need a doctor that understands what an optimal thyroid is - so probably it is the private doctor route … I’ve got the list of doctors from thyroid uk - it is expensive for the consultations , blood tests and I have no idea what the cost of a NDT prescription would be on top of that ….thankyou so much for your insight 😊

[pennyannie in reply to awillis]

If you mean by ' wobbling ' thyroid - that your thyroid levels are not constant - it could be that you have Hashimoto's - a thyroid auto immune disease that attacks the thyroid and causes erratic thyroid hormone production and longer term with successive attacks the thyroid becomes disabled and you become hypothyroid - and generally diagnosed by o/range thyroid antibodies - as well as a TSH over 5 :

As I wrote earlier the thyroid antibodies wax and wane - and around 20% of those suffering Hashimoto's do not have these antibodies and are diagnosed on symptoms being tolerated -

and maybe a thyroid scan might be a way forward for a diagnosis - either NHS or Privately.

It could also be that since the supplement you are taking is OTC and has no declared fixed measure of content - some tubs will be more or less potent than others and symptoms may fluctuate.

However I tend to think it's likely my first guess - you might like to read around on the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmacist.com

[awillis in reply to pennyannie]

Hi pennyannie- this all makes such a lot of sense, thankyou. I didn’t realise that 20% of hashi diagnosis have negative antibody results. So it’s becoming obvious in my family we have a lot of autoimmune issues. My mum is hypothyroid and has rheumatoid arthritis, leaky gut, fibromyalgia ,ME, but has never heard of hashimitos or Ords. Another sister has underactive thyroid. My oldest sister had a goitre recently but has just gone back to normal thyroid function so no action taken. Another sister had a replacement knee op only for it to fail and eventually has been diagnosed with rheumatoid arthritis (the type that presents negative markers which made it a bit difficult to get a diagnosis )…

A Wobbling thyroid - so when my eyebrows first started to disappear may-July I did my first private thyroid tests (23.7.24 at 6.30am)- I’ll put results again

TSH 5.56 mIU/L (0.27 - 4.2) 134.6%

Free T4 (fT4) 16.6 pmol/L (11 - 23) 46.7%

Free T3 (fT3) 3.7 pmol/L (3.1 - 6.8) 16.2%

T4:T3 Ratio 4.486 

Thyroid Peroxidase Antibodies (TPO) 9 IU/mL

I couldn’t get a Ferritin or Folate reading so MMH sent another test kit out to repeat the test. I did another test only a week later 30.7.24 (6.30am) results here

TSH 3.71 mIU/L (0.27 - 4.2) 87.5%

Free T4 (fT4) 17.4 pmol/L (11 - 23) 53.3%

Free T3 (fT3) 4.1 pmol/L (3.1 - 6.8) 27.0%

T4:T3 Ratio 4.244 

I was quite shocked that within 7 days my thyroid could swing back into the normal range again. This is what I mean by wobbling. I seem to be swinging between ok and then subclinical levels.

Last night i went to bed 10.30pm - got to sleep quickly only to wake with such a start and was wide awake 1-3am as I felt my heart was racing - my Fitbit had my heart rate at mid 70’s - my normal resting heart rate is 56-59 when asleep. I felt a bit wired but eventually got back to sleep. This seems to be a recurring pattern - I’ll have a few weeks of un disturbed sleep then I’ll have a few weeks where 1 or 2 night sleep are interrupted and il awake for a couple of hours . I don’t know if that is anything to do with my thyroid levels or perhaps my adrenals ?

Knowing that my results seem so up and down makes me feel quite nervous about going to my nhs doctor as the chances are I’ll ask for a full thyroid test and it’ll be normal that day/ week. So if I need to ask for any future thyroid tests they are not going to be quite so obliging??

I’ve ordered a couple of the izabella books - Thankyou for the recommendation that seems like a great place to start.

Thanks for all of your suggestions and reading such long posts 🥹😊

[pennyannie in reply to awillis]

No worries maybe if you look at getting a thyroid scan - this will show a damaged, disabled thyroid and get you at least a diagnosis - as your doctor seems unwilling to acknowledge your disabling symptoms.

If you go into Thyroid UK - the charity that supports this patient to patient forum there is mention there of a clinic where you can arrange a Private thyroid scans - but again -

I do not know if your doctor will acknowledge a private scan or diagnosis - but it should force his / her hand to start treating you as s/he would like to be treated if in your shoes.

thyroiduk.org

[pennyannie in reply to pennyannie]

Yes - your family history is an obvious ' give away ' - with there generally being a genetic predisposition to most AI diseases -

How are your Mum and sister getting on having been diagnosed - hypothyroidism ?

Are they both on T4 monotherapy through a NHS doctor and have had relief of symptoms ?

And your sister with the goitre - what was said as the cause of her ill health ?

Maybe they need to start their own posts - every case can be different - even within the same family.

If you are all with the same doctor - surely this has to be a slam dunk !!

[awillis in reply to pennyannie]

Ha ha 😝 all different doctors I’m afraid . The sister with the goitre was told her thyroid figures are back in range now and nothing to worry about .

My mum and other sister are on a very low dose of levothyroxine only (mum 50mg and sister less than that) but I wouldn’t say either of them feel really well but have other health things going on too. My mum thinks she was once on synthetic t3 but didn’t get on with it but she’s a bit vague as this is going back some time ago. She’s never seen any of her thyroid blood test results - only the info passed on by doctors 🥹

Would blood tests a week apart showing subclinical ranges then back within normal range be likely in the early stages of hashimotos / ord’s? I was really surprised the thyroid levels could adjust themselves so quickly??

Many thanks you’ve been a great help 😊

[pennyannie in reply to awillis]

Well it would be a good idea if all your family registered for on-line access to their medical records held at the doctors surgery and then share the blood test results with forum members as we can interpret them and suggest the next best step for each individual:

50 mcg T4 is just a starter dose - and T4 thyroid hormone replacement does not just top up an ailing thyroid - as given a little time the thyroid itself gets lazy and relies on this ' top up ' and down regulates itself - which means it is likely that we will all need a full replacement dose of thyroid hormones -

A fully function working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

T3 is the active hormone that runs the body -

No thyroid hormone replacement works well until the coe strength vitamins and minerals are up and maintained at optimal levels as previously detailed - and thyroid hormone replacement needs to be taken well away from any other medications for maximum absorption and conversion into T3 - your Mum's experience with T3 - probably means she wasn't on enough to make a difference - but there are so many co-factors that we don't know at this point in time.

The only thing that has substantially changed since taking the Metavive is your TSH -

Were the tests all done in exactly the same way at the same time of day etc - if so - and if there were no problem with your thyroid - your TSH should be stable at around 1.20-1.50 on an early morning, fasting blood test.

[pennyannie in reply to awillis]

  Hope this is the post that you were referring to :  Jollypolly

[pennyannie in reply to pennyannie]

This message is for Jollypolly

[awillis]

Thanks pennyannie - I’ll look into the scan and get reading around the subject 👍😊

[pennyannie in reply to awillis]

Yes - do read around also on Thyroid Uk - thyroiduk.org

within the website there is also a very extensive list of both hyper and hypo symptoms -

and an excellent tick box exercise covering the physical, mental, emotional, and psychological impact this insidious disease can cause - many symptoms of which, as women, we blame on something else !!

[pennyannie in reply to pennyannie]

Have you stopped taking whatever that iodine supplement was - as it is not recommended when you believe you have, or do have, a thyroid health issue.

[awillis in reply to pennyannie]

Hey Pennyannie,

23.7.24

30.7.24

31.10.24

These 3 tests were done with fingerpick MMH at 6.30am

My last test 26.11.24 was with BH via blood draw at 9.30 am - this was the earliest I could get this appointment with the nurse as they only open at 9am.

I followed all the rules and guidance on here re stopping biotin/ b vitamins 7 days prior and left a 24 hour gap after taking the last metavive capsule ….

Yes I stopped taking the iodine about 3/4 weeks ago - when I first start taking it I liked the taste but after a few weeks I stopped liking the taste and took it that my body maybe doesn’t need it 🤷‍♀️

I shall look into getting the jarrow folate as that could be higher and this week I’ve just switched over to the better you vit d spray with k2….

In my last test 26.10.24 I was surprised that my TSH has lowered and seems to have taken my FT4 lower with it ??

Many thanks 😊

[pennyannie in reply to awillis]

Well I'm presuming the TSH was lower on the last blood test because you were taking the Metavive -

though - not at a high enough dose yet - to have any bearing on your T3 and T4 levels?

[pennyannie in reply to pennyannie]

Have ' pinged you ' into a post regarding iodine - if you are not bamboozled enough already !!

[awillis in reply to pennyannie]

thankyou … I’m definately bamboozled in a good way and I’ve got 3 new books of izabella coming in the next few days 😂

what I am very thankful for is all the support from yourself and everyone on here and the information on here from people that have already trodden the path ⭐️ 😊