Medichecks results - I'm in depth of depression... - Thyroid UK

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Medichecks results - I'm in depth of depression, panic attacks etc.

marigold22 profile image
105 Replies

I have been taking T3 only for many years now. Around December last, I used some Cynomel T3 which I discovered was dated 2016. As soon as I realised I changed to an in-date one.

For around 2 months I have been suffering debilitating depression, panic attacks, high anxiety. However I have had extremely high levels of stress in my life which has probably contributed.

Grateful for views on these results

My Medichecks private blood test (taken on 6th March 2019) results are :-

TSH 0.036 (0.27 - 4.2)

Free T3 3.16 (3.1 - 6.8)

Free T4 0.5 (12 - 22)

Vit. D 140 (50 - 175)

Vit B12 219 (37.5 - 188)

Folate 19.01 (> 3.89)

Ferritin 121 (13 - 150)

Thyroglobulin antibodies 257 (< 115)

Thyroid Peroxidase antibodies 9.94 (< 34)

CRP HS 4.13 (< 5)

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marigold22 profile image
marigold22
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105 Replies

Your T3 is far to low and what the hell has happened to your T4. I have never seen one so low. I am not a seasoned expert on T3. I take a small amount myself but mainly NDT which I know reduces T4. I am not sure of T3 does the same, hopefully someone else will clarify.I am thinking looking at these results that you might need to be on some levo as well as the T3. I presume your pulse is low and temperature below normal. It would be good to check. It looks like you are depressed because you are hypo. Can you just make sure your T4 result is not a typo?

marigold22 profile image
marigold22 in reply to

Thanks for your reply. The T4 result is not a typo. My T4 results have been extremely low for a long time. I did the DIO2 thyroid test and it returned as faulty gene from one parent. (heterozygous). So I'm thinking my body isn't really making any T4

greygoose profile image
greygoose in reply tomarigold22

The faulty DIO2 gene has nothing to do with T4 levels. And, it's not your body that makes T4 as such, it is your thyroid gland. So, your thyroid is making any hormone and you're not taking any levo, so your FT4 is low. That is perfectly normal. Whether you need to take any T4 is another matter entirely.

But, your FT3 is much too low, so not surprising you have symptoms. How much T3 are you taking? You obviously need to take more. :)

Do you know you have Hashi's?

marigold22 profile image
marigold22 in reply togreygoose

Thanks greygoose I have known since 2017 that I have Hashimotos.

greygoose profile image
greygoose in reply tomarigold22

Well, you need an increase in dose, it's as simple as that. :)

in reply tomarigold22

Noticed your ferritin and vitamin D levels looked raised by 20 points.

Too high ferritin can lead to too much iron in the blood leading to toxic effects.

Too high vitamin D rather than Vitamin D3 can lead to an overload which is difficult

to clear. Information indicates that Vitamin K should be sufficient as it works with vitamin D to moderate how calcium is absorbed in the bone rather than in arteries.

Vitamin K reduces calcification which is indicated in heart disease.

healthline.com/health/ferri...

vitamin.council.org/about-v... I getting too much vitamin-d

healthline.com/nutrition-d-...

Advice is to contact your doctor for tests for both ferritin and vitamin d levels to find out whether you have hypercalcaemia or too high iron levels

marigold22 profile image
marigold22 in reply to

Thanks Hidden . I'm confused as both Vit D and Ferritin are within ranges given although both high in the range.

Vit D result = 140 (range 50 - 175)

Ferritin result = 121 (range 13 - 150)

ThyroidThora profile image
ThyroidThora

Hiya Marigold22,

Looking at your results above it would seem that they are all in range apart from your thyroglobulin antibodies. This can be indicative of Hashimoto's disease and Grave's disease so it might be worth while adjusting your thyroid meds. Are you self medicating or under an endocrinologist? It's a while since we chatted online so I cannot remember whether you are self treating. Did you get an explanation from Medichecks about your blood test results?

TT x

marigold22 profile image
marigold22 in reply toThyroidThora

I requested a speedy result from medichecks so a doctor has not commented. I'm under an NHS endo but haven't seen him/her for 6 months. They are useless anyway. Thanks for your quick reply

ThyroidThora profile image
ThyroidThora in reply tomarigold22

Oh I'm sorry to hear that. Endos seems to like to keep you on limbo, I know mine does and, it's so frustrating.

Giagal profile image
Giagal

Your t3 it too low. What dose are you taking. You may benefit from a bit of t4 of adding small dose of ndt.

marigold22 profile image
marigold22 in reply toGiagal

I've been taking 40mcg of T3 a day, all in one dose. I did though take some out of date Cynomel without realising, thinking I ought to use it up. I've been taking in-date Morningside T3 for about one month

DippyDame profile image
DippyDame

How much T3 are you taking?

marigold22 profile image
marigold22 in reply toDippyDame

40mcg a day all in one dose. I've been taking it at 4.30am, and by 7am I get palpitations. I'm going to try splitting the dose tomorrow.

DippyDame profile image
DippyDame in reply tomarigold22

Palpitations can also be caused by under medication.

Personally I would try adding another 5 or 6.25mcg (depending on strength of tablet...a quarter!) and wait for at least 2 weeks before considering your next change if no improvement wait another 2/3 weeks and add a further quarter tablet. The decision is yours.

I was rather hesitant to trial this but gave it a go anyway....and glad I persevered.

If you are unhappy/worried you just need to drop back your dose and wait a bit before re-trying.

I don't think you need worry about the outdated Cynomel

Meantime you must carefully monitor your temp and resting heart rate and note how you feel, as I'm sure you already know.

I am (almost certainly...no official diagnosis) thyroid hormone resistant (RTH) and take one, 100mcg T3-only, dose around 4am. If I was not RTH this dose would make me vastly overmedicated! A low temperature suggests RTH

I see you are DIO2/heterozygous and suspect that as a result you are not producing T4. That is not the case what it means is that you are not able to efficiently convert T4 to T3.

I am DIO2 homozygous...a double whammy!

It may be that your pituitary is not sensing you need T4 for whatever reason and the message is not sent to the thyroid to produce more, hence a low result.

My FT4 level is very low because I am T3 only.

Nothing else worked for me until I suspected RTH and very slowly increased T3 until my symptoms eased.

I'm not a medic..just another member desperate to feel human again who has read much, learned a bit and used that info to eventually improve. I'm only making a suggestion you might wish to pursue not advocating any treatment because we are all different with different needs...

Take care

DD

Dolores1947 profile image
Dolores1947 in reply toDippyDame

I take synthroid 88 mg. I cant take levithroxin. I take cytomel 1/2 tablet. My TSH is low

helvella profile image
helvellaAdministrator in reply toDolores1947

Synthroid is just another make (brand) of levothyroxine. Entirely possible you tolerate it better than one or more other makes but it is the levothyroxine product in the USA which puts a lot of resources into marketing. Other makes might be as good but you certainly should not change makes without knowing exactly what the options are.

Dolores1947 profile image
Dolores1947 in reply tohelvella

I gained 50 lbs while I was on levothyroxine I went to Endocrinologist in wichita ks and he said he never puts his patients on the generic meds at all. I was doing good in Wichita ks but then we moved to Stillwater Oklahoma and about yr ago my TSh was low. I took synthroid 75 mg the dr here put me 88mc and then later put me on on cytomel 5 mg 1/2 tablet every day.

helvella profile image
helvellaAdministrator in reply toDolores1947

It is possible to be on "generic" meds and do fine. For example, Lannett/Unithroid, Levoxyl, even Tirosint (although that is not a tablet but a gel cap).

Randomly changing, or accepting whatever you are given, is a no-no.

You might not be happy if you were depressed.

Dunkenb profile image
Dunkenb

Your T3 is very low. I take 20mg 3 times a day starting when I get up, then every 6hrs (T3 only lasts a short time) If I’ve got an especially active period during the day I increase to 30mg .

I’d probably be inclined to take a small amount of T4 (levothyroxine) .

leoopard profile image
leoopard in reply toDunkenb

not mg Dunken, but mcg !!! You'd be charging about like a formula 1 car ;-)

Jodypody profile image
Jodypody

With respect those results really aren’t good and panic attacks are horrendous especially when it’s due to under medication I doubt she’s making mountains out of molehills

HashiFedUp profile image
HashiFedUp

All I can say is I’m sooo sorry to hear you are feeling depressed and are having panic attacks. Keep going back to your Endo and keep trying different doses and medication to give yourself a chance of getting your thyroid etc right. Also you say you have had life stress, so perhaps address this too rather than just thinking about your T3 levels etc. An antidepressant might help over he coming weeks to lesson your symptoms until your thyroid levels are better etc. Hang in there. The nasty symptoms will pass, in time, just be patient and keep going to docs and Endo xx

HLAB35 profile image
HLAB35

Evidently your t3 is a problem.. but also your CRP is on the high side. High inflammatory markers, anxiety and panic attacks are symptoms of low magnesium... Unfortunately the serum Magnesium blood test is of little clinical value as our bodies will keep it in circulation for the sake of our hearts and at the expense of our mental health and peripheral muscles. An RBC blood test can be ordered by a few select doctors (the few that understand the role that Magnesium plays). I'll update this reply with a few links later on..

Dr Myhill sees low RBC Magnesium in ALL of her ME/CFS/Fibro patients and actually gives it many of them as injections. She also recommends Epsom Salt baths.

drmyhill.co.uk/wiki/Magnesi...

Dr Carolyn Dean is a Magnesium evangelist, because she's seen improvements in all of her patients treating up to 65 different conditions by adding Magnesium into their recovery programme. She also promotes her own brand of absorbable Magnesium called ReMag. I realise that she's really knowledgeable and I follow her blogs, but her products are pricey so I would only use them if I was recovering from surgery, or something like that and even she admits that Mag Citrate is one of the best forms (also transdermal Magnesium is very good).

anxietyslayer.com/journal/w... (apologies for all the sponsorship things on this podcast, but it is helpful and I really like her honesty).

Finally, just to illustrate my point about CRP and inflammation. The only issue with the link is that they talk about using Mag Oxide which is rubbish - it is guaranteed to send you to the loo and is very hard to absorb...

hsionline.com/2006/08/07/re...

N.B.

Just one word of caution is to always start on a low dose (that's why the powdered citrate form is good) as it'll wake things up with a bolt of lightning if it's too big a dose (do as one does with thyroid meds).

crenhov profile image
crenhov

Is your TSH 0.036? Mine is 0.04 and my surgeon won't let me go any lower than this as it is supressed and I did not have cancer.

SlowDragon profile image
SlowDragonAdministrator

How long before this blood test was last dose of T3 ?

Last dose should be 8-12 hours maximum before test

DIO2 gene doesn't mean we can't convert. It just means the brain often requires a small dose of T3, in addition to Levo (for most people)

Have you tried adding back in small dose of Levothyroxine? Perhaps 25mcg initially

Hashi-hacker profile image
Hashi-hacker in reply toSlowDragon

Hi SlowDragon, not wanting to go off topic, but can you point to anything that would expand on your comment 'DIO2 gene doesn't mean we can't convert. It just means the brain often requires a small dose of T3, in addition to Levo (for most people)' I'm really interested in knowing as much as I can about the DIO2 gene mutation and didn't fully understand your comment. Thanks x

SlowDragon profile image
SlowDragonAdministrator in reply toHashi-hacker

As I understand it , it's only the brain that needs the T3. But obviously that's a very important part of the body, as it also affects pituitary, and therefore adrenals etc

thyroiduk.org.uk/tuk/testin...

To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

Other DNA issues can affect Thyroid too

bluehorizonmedicals.co.uk/t...

Hashi-hacker profile image
Hashi-hacker in reply toSlowDragon

Thanks for that. I'd read that passage before but it hadn't sunk it. Guess I need some T3 for my brain haha!

I know my genetic raw data so I might try and dig down through the blue horizons list, I guess I need to know the relevant snp's for each gene..... scary territory!

x

marigold22 profile image
marigold22 in reply toSlowDragon

I took my 40mcg of T3 at 4.30am on the Tuesday and blood taken at 10am Wednesday. So maybe that's the reason T3 result is so low?

SilverAvocado profile image
SilverAvocado in reply tomarigold22

I think this is probwbly a bit long, the advice is to leave 12 hours, and the half life of T3 is something like 6 hours, so it will get used up pretty fast.

The blood tests show your freeT3 is very very low, though. Even if the test isn't fully valid its likely you're undermedicated.

SlowDragon profile image
SlowDragonAdministrator in reply tomarigold22

Definitely

Even if you normally take T3 all in one go, the day before testing you need to split dose so that last dose is 8-12 hours before blood draw as a maximum

You might try splitting dose anyway into 20mcg waking, 10mcg 8 hours later (3pm) and 10mcg at bedtime (11pm) - last dose at bedtime can give much improved sleep for some of us

Certainly try this the day before any test

Graph showing why to take T3 approx 12 hours before blood test

healthunlocked.com/api/redi...

Research Paper data comes from

ncbi.nlm.nih.gov/pmc/articl...

Joni4ever profile image
Joni4ever in reply tomarigold22

Yes. I was told to be without meds for any testing. Doctors don't realize. It an indication of last 6 weeks *if* you don't take medicine prior. Skewed results are a reality if taken prior to the draw.

Naomi8 profile image
Naomi8

I have experienced 2 episodes of depression with acute anxiety,panic etc.

The first one was on thyroxine,which I had been on for years.This lasted 2 years & anyone who hasn't experienced this profoundly altered mental state has NO concept of the mental suffering involved.I had a consultation with Dr P & followed his protocol.No change.I eventually came out of it by taking SAMe,having done a 23&me genetic test & found I have the MTHFR variant.

The second episode occurred while taking 55mcgs of T3,which I did for 2 years.After a few weeks back in that altered state of permanent terror,I took Sertraline at a very low dose for 18 months,then weaned myself off at 10% per month.(SAMe didn't work this time)

I have just done the Blue Horizon thyroid gene test.I have the D102 gene from both parents.Also,I have a genetic variant that affects my ability to clear cortisol.

I have been anxious all my life & experienced episodes where this became very acute,but these are the only 2 episodes of clinical depression with panic disorder I have experienced.They came after periods of prolonged stress-ie ongoing situations personally stressful for my personality which were difficult to resolve.

My understanding of the impact of the D102 gene variant is that:-from one parent it can affect conversion,from two parents,T3 is needed as liothyronine or NDT.

leoopard profile image
leoopard in reply toNaomi8

Naomi,

I have persistently very high Cortisol (it is the root of my own thyroid issue I suspect). I wonder could you give me a little more info on the genetic variation?

Tx

Naomi8 profile image
Naomi8 in reply toleoopard

My Genova saliva test when in my first depression with panic disorder(2011-2013) showed low cortisol,indicating my adrenals had crashed after years of stress,I believe.My body temperature has never recovered either,despite 2 years of T3-only.I believe childhood stress set me up for all this.

Google MTHFR to learn about this gene variant(SNP) & its connection to chronic anxiety.

I used Paul Robinson's protocol for healing the adrenals(a circadian method of dosing T3-only).I still went into the second depression with panic disorder(2016)I now use NDT.Sertraline restored my peace of mind.

The "23&me"genetic test showed me I have the MTHFR SNP & I have since used supplements in the methyl form eg B6,B12 & folate.It also highlighted my poor ability to clear oestrogen.

"Blue Horizon"gene test showed me I have the D102 variant(SNP)from both parents that makes me doubly poor at converting T4 to T3,leading to mood issues like anxiety & depression .it also confirmed I do not clear cortisol or oestrogen effectivley.

PM me if I can help more

leoopard profile image
leoopard in reply toNaomi8

I do not suffer Abnxiety Naomi, but do have other issues relating to my high Cortisol. I am familar with the MTHFR deficiency and some of the issues created by low SAMe levels, that would however typically affect production of Hormones not just clearance. I thought you were referring to a distinct polymorphism that affected Cortisol clearance.

I would strongly recommend to get a specific test done for actual SAMe production to verify that your levels of Methyl-B9 abd B12 are doing the job. Until you have that core problem addressed anything else will be 'messing about at the edges'.

Naomi8 profile image
Naomi8 in reply toleoopard

The polymorphism in question was the COMT polymorphism.

Please give me more info on how to get a specific test for SAMe production.Is this different from a homocystine test?

marigold22 profile image
marigold22 in reply toNaomi8

Thank you Naomi8 . I have thought that I have adrenal insufficiency / fatigue from relentless stress from a family member which I only put a stop to on 1st February. I may try to do a private cortisol test. Also I must learn about MTHFR gene. My father always had chronic anxiety; mine seems to come & go presumably depending on my thyroid health

SlowDragon profile image
SlowDragonAdministrator in reply toNaomi8

I am Heterozygous DIO2, Hashimoto's, gluten intolerant and multiple vitamin deficiencies. Now almost fully recovered.

As I understand it , it's only the brain that needs the T3. But obviously that's a very important part of the body, as it also affects pituitary and other endocrine systems, especially adrenals, as result

thyroiduk.org.uk/tuk/testin...

To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

Certainly the difference for myself, just adding a small dose of T3 alongside my Levothyroxine, has been nothing short of astounding. BUT I did spend a whole year before starting on T3 (via NHS prescription) getting all vitamins OPTIMAL first, and absolutely strictly gluten free and soya free too for year before too.

I take Morningside Healthcare T3 - 10mcg 7am, 5mcg at 3pm and 5mcg at 11pm along with 112.5mcg Levothyroxine

8 hour dosing is recommended in a paper somewhere by Professor Colin Dayan.

I had been prescribed 20mcg T3 almost 20 years ago (as single dose), but my gluten intolerance and vitamin deficiencies were not recognised or resolved first. So I found I couldn't tolerate T3 and gave it up after a year.

I am also considering doing this multiple DNA test

Just waiting for it to go back on special offer

bluehorizonmedicals.co.uk/t...

Hpbr profile image
Hpbr in reply toSlowDragon

If you see this on offer, would you be able to post? Same for me, if I see it, I'll post. Looks very interesting but expensive. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toHpbr

They had it on offer at £99 in run up to Christmas....

Naomi8 profile image
Naomi8 in reply toSlowDragon

yes,I got that offer!

Naomi8 profile image
Naomi8 in reply toSlowDragon

I got this test done on a special offer this winter

Maicat profile image
Maicat

I don't understand why the FT4 is so low, but your TSH is below range which makes me wonder if you haven't gone into hyperthyroidism which could explain anxiety, panic attacks, and palpitations. Also when I have had too much T3 I had palpitations. Definitely speak with a competent doctor to determine what medications (T4 and T3) and what doses you should be on. Good luck. It's frustrating sometimes to get leveled out and sometimes it seems like levels are ever changing.

marigold22 profile image
marigold22 in reply toMaicat

I can't find a competent doctor! Whenever I see NHS endo (every 6 months) they whizz through, look at a few notes, and I'm out the door

seekingjenna71 profile image
seekingjenna71 in reply toMaicat

T3 is causing the TSH to drop. It's a normal response to T3, it does not mean you are over medicated.

SlowDragon profile image
SlowDragonAdministrator in reply toMaicat

marigold22 has low TSH because she takes T3 (Liothyronine)

Almost any dose of T3 will cause suppressed TSH. (Even if not taking enough)

As she takes no Levothyroxine (T4) and own thyroid output is completely turned off by suppressed TSH, then FT4 is unsurprisingly very low

It might be better to add some Levothyroxine in.....some on only T3 find they can slowly add in Levothyroxine ...others find they still can't tolerate any Levothyroxine

Everyone is different, it's trial and error

Aunds profile image
Aunds

Dear Marigold 22

You have so many comments, I too have both mutations of the DIO2 gene and my bloods look similar to yours except my T3 is in the top quarter of the range. I feel well, I have slowly increased my T3 and now take 25mcg at 6am, 2pm and 10pm. If anyone had said it would take 75mcg of T3 only to get me well I wouldn’t have believed them! Baby steps - I did this by small dose increased, waiting two weeks to settle, monitoring pulse and temperature. I have always taken advice from Greygoose, I see she commented at the beginning, she is very knowledgeable and also takes T3 only. I wish you well as you sound like you are in a very difficult place at the moment.

SlowDragon profile image
SlowDragonAdministrator in reply toAunds

I take Levothyroxine plus T3, but also find 8 hour dosing of T3 is by far the best for me. (7am, 3pm and 11pm)

DippyDame profile image
DippyDame

Sorry but I don't think it's helpful to suggest that the OP is making a mountains out of a molehill. She needs help.

Neither do I agree that a doctor's advice should be accepted without question when that advice is clearly not helping the patient.

Medics are very poorly trained in matters thyroid, were that not the case this forum would not exist!

Your doctor friend is correct in that "normal" is a false concept however diagnosing by numbers alone is also wrong. That ignores the important question, "How do you feel".

Exercise may be important but it won't correct a wrong diagnosis or wrong medication be it thyroid related or otherwise.

I guess you may discover that my views are widely shared here.

I hope you are keeping well.

marigold22 profile image
marigold22

Thank you all for your input. I'm fairly confused... am I over medicated or under medicated? I felt really well last Summer & had been taking 40mcg of T3 for ages before that. My very low T4 is concerning me. Also the extremely low TSH.

SilverAvocado profile image
SilverAvocado in reply tomarigold22

Unfortunately I think you've had some good advice and some bad advice all mixed together :(

Personally, I think without a doubt this is undermedication. FreeT3 is the most important of the 3 thyroid panel numbers, and when taking T3-only its really the only one to look at. In your case, it is rock bottom.

In addition to that, symptoms are of course more important, and it sound like you're feeling yucky at the moment.

I think some people are reading too much into the TSH, and giving the conventional medical interpretation, or even thinking that because your freeT3 is within range that that is fine. But of course we know that within range or 'normal' isn't good enough, with thyroid hormone where you are inside the range is what's important.

marigold22 profile image
marigold22 in reply toSilverAvocado

Thank you SilverAvocado . I did leave a massive gap between last 40mcg dose of T3 and the blood test as explained to SlowDragon . It could have skewed the T3 result?

SilverAvocado profile image
SilverAvocado in reply tomarigold22

Yes, I think it will have made the T3 result a bit lower. As it looks now, the TSH is pretty low given this freeT3 result (although everyone is different), so probably the true freeT3 is a bit higher than this.

Unfortunately as the blood test is compromised we can't truly know what it would have shown if you'd taken it 12 hours after a dose. But if I was asked to guess I would say it's unlikely the freeT3 would have been too high, and I think it would still be on the low side.

All you can really do is try it, trial an increase and carefully observe how you feel. Be ready to drop back if the symptoms worsen, but hopefully you will get some improvement :)

SlowDragon profile image
SlowDragonAdministrator in reply toSilverAvocado

Except marigold22 left far too long between last dose of T3 and blood draw, so the Ft3 result is a "false" low

Retesting might be best option

SilverAvocado profile image
SilverAvocado in reply toSlowDragon

I agree that restesting is the best option of all, I was writing assuming that it's not an option for Marigold22. If money or other practical concerns aren't an issue, then definitely retest.

leoopard profile image
leoopard

Hi Marigold,

something is clearly wrong, trust your own judgement.

You have very modest T3 levels, very low (meaning below normal range) T4 levels. Despite this low TSH (the lab is using normal ranges for somebody in therapy).

Am I correct in thinking perhaps you had this blood test taken AFTER your dose of Cytomel on the same day? I ask since this would explain the TSH and give a clearer picture. If not we would otherwise need to question whether other hormonal abnormailities were suppressing your TSH especially with inflammation as shown by your antibodies and CRP.

I noticed like others you have raised antibodies and low Thyroid hormones so am working on the assumption you are diagnosed with hashimotos.

A sudden large burst of T3 or T3 at the wrong time of day can produce the symptoms you describe as can having too little. It's important as mandyjane pointed out to have some T4 as well. T4 is important for some liver functions.

I would agree with your plan to split the dose (some do better on a single dose, some do worse) and completely agree with SlowDragons proposal to try 25mcg of Levothyroxine to raise your T4. Should those two things not work, I would increase either the two slowly until you feel calm. You will likely notice improved concentration when you get the combo right.

You may also need to experiment with the timing of your Cytomel. Some members her do much better taking it at night or very early morning (waking themselves to so) whereas I find any Thyronine (Cytomel) late in the day produces both anxiety and hallucination like symptoms or weird dreams.

I hope that helps.

Helsan profile image
Helsan

Hi my endocrinologist says suppressed tsh is not a problem once medicated unless accompanied by symptoms. I have had a TT and am homozygous for DIO2. My T3 is in top quarter of range and I have been asked to get bloods at 6 hours after meds to show T3 is not going over. This works well for me. I take some T4 too and he likes this in top quarter but I cut it down as I felt unwell. I too would like to know why we need T4 if not converting? I had T3 way below range and T4 way over with high RT3 before adding in T3.

SilverAvocado profile image
SilverAvocado in reply toHelsan

In general, T4 is not particularly used for anything, it is just the storage form waiting to be turned into T3. However, some people strongly feel they need some T4 to feel well.

Theoretically T4 will give a little bit of spare stored hormone hanging around that your body can use up by converting into T3 only when its needed, therefore smoothing out the ups and downs you might get with fast acting T3. In practice on higher doses of T3 I'm not so sure this happens, it looks more like the body is happy just to run on a supply of tablets as T3.

We can only really find out what works for us through trial and error, though. Everyone is very different, has a different amount of thyroid function remaining or ability to convert T4 to T3 and transport it into cells, as well as different levels of activity, etc.

SilverAvocado profile image
SilverAvocado in reply toSilverAvocado

Oops, forgot to answer your conversion question. There are 3 separate deiodinases in the body, which all have slightly different roles in conversion. There are also many many other factors that impact conversion. Even being homozygous for the DIO2 gene might not make a huge difference to how good you are at conversion.

I've heard estimates that the difference the gene makes is as as low as a 6% , and some say it makes no real difference at all. I've seen people with spectacularly low conversion at some points in life, when they did well years earlier, so there is a lot more to the story of how well we convert than just the genetics.

At this moment, where there isn't good evidence for exactly what impact the gene makes, a lot of the benefit is strategic. Its something that can be used to persuade doctors to prescribe T3.

SlowDragon profile image
SlowDragonAdministrator in reply toSilverAvocado

This was discussed by Professor Toft in recent London talk

They still don't really understand the implications of DIO2 gene variation because some patients with homozygous or Heterozygous DIO2 manage perfectly well on just Levothyroxine

Helsan profile image
Helsan in reply toSilverAvocado

Thank you I had the DIO2 test after my very good endo said I definitely wasn’t converting. I had it done as some CCGs were accepting it as proof of needing T3. Not mine sadly. This is the reason I queried what use T4 is to me I will discuss at my next appointment. Thank you all for the valuable support you give in here.

SilverAvocado profile image
SilverAvocado in reply toHelsan

Oh yes, sorry, that's the bit of the question I didn't answer. Yes, I think you're right that if your conversion is terrible you probably don't need it. These are very trial and error things, I think I mentioned that some people are sure they feel better with some T4, but in general it seems it doesn't do anything in itself in the body, except sit around waiting to get concerted into T3.

Unfortunately when we're under the guidance of doctors there often isn't the opportunity to try out a large range of different doses and combinations to see which is the absolute best for us.

virtualreality profile image
virtualreality in reply toHelsan

I've still got a lot to learn about this, but I think SilverAvocado is spot on - there are three deiodinase enzymes involved in conversion processes. As I understand it DIO2 is mainly involved in central T4 to T3 conversion, eg in the brain, whereas DIO1 is involved in conversion in peripheral bodily tissues. DIO3 I believe is involved with converting T4 to rT3. So it seems possible that genetic factors could impair central conversion processes while leaving peripheral conversion intact. In that scenario I presume T4 could still be converted effectively in peripheral tissues. That's what I've gleaned so far, anyway - and happy to be corrected if I haven't got that right!

emilybentz profile image
emilybentz

greygoose you are completely wrong and i am so sick of seeing you give advice that is going to make people sicker!

You are very hyperthyroid. Yes your free t3 and free t4 levels are low. I guarentee your reverse t3 would be extremely high because it is trying to protect from such high t3 (hence why your free t3 and t4 are low....it blocks them to protect you).

Our bodies need t4. Even if your not a great converter it still converts some. If your tsh is too tanked (below 1) it will not convert as well. From someone who has almost died from all the stupid t3 advice....you might try adding in t4 to get around a 1.0 tsh. See if you convert and if not lower the t4 just a smidge and slowly add in a tiny piece of t3 (im talking 1.25mcg pieces) until you feel well. But try not to get your tsh too low or else you will loose natural conversion.

To warn you....you will feel like hell when readjusting and it may take a good 6 months to get it right.

greygoose profile image
greygoose in reply toemilybentz

emilybentz would you care to elaborate exactly where I'm completely wrong?

And, how, exactly, can anyone be 'very hyperthyroid' with their Frees in their boots?

Are you aware that it is impossible to have high rT3 with no T4? T4 converts to rT3 and T3. No T4 means no rT3, and marigold has practically no T4. The thyroid itself doesn't make rT3, it comes from conversion.

hence why your free t3 and t4 are low....it blocks them to protect you

And, perhaps you would care to explain how rT3 causes low T4? Where, exactly does it do the blocking?

Not all bodies need T4. Some of us do very well without it. And, it's not always a question of how well we do or don't convert. I don't know what 'stupid T3 advice you were given' but was it me that gave it to you?

Why do you think she needs a TSH of 1? And, how would adding in T4 give her a TSH of 1? Do you mean completely stop the T3 and start again on T4? You're making a lot of statements here, with very little explanation. Also being rather rude, I think. Don't you?

emilybentz profile image
emilybentz in reply togreygoose

I know because i have experience it.

greygoose profile image
greygoose in reply toemilybentz

Experienced what, exactly?

We are all different, and just because something happened to you, doesn't mean it will happen to everyone. Each case needs to be judged on its own merits. The problem with doctors is that they adopt a 'one-size-fits-all' approach. And, it doesn't work.

in reply toemilybentz

|Hi Emily - it would be so helpful to understand your problem as you were obviously under stress as your diagnosis was not correct when you needed the right information. As you nearly lost your life was your treatment affecting not only your thyroid but your heart?

emilybentz profile image
emilybentz in reply togreygoose

These high dosages of t3 are not natural! Our body does not produce that much naturally!

greygoose profile image
greygoose in reply toemilybentz

Of course it doesn't. Not a healthy body, with a healthy thyroid. But we are not healthy people, we are hypo. And that changes all the rules. Have you never heard of thyroid hormone resistance? Where the thyroid hormone cannot get into the cells? The only way to over-come that is to take very high doses of T3.

helvella profile image
helvellaAdministrator in reply toemilybentz

This response contravenes one or more of the following Thyroid UK Guidelines:

7. All members should conduct themselves at all times with respect and honesty.

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12. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.

15. If possible, show a clear distinction between personal experience or opinion and evidence-based information.

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Marz profile image
Marz in reply toemilybentz

Hi Emily - I appreciate you are very new to the Forum - so Welcome ! You may wish to click onto greygoose and observe her Bio mentioning 357 posts over seven years and the 432 followers :-) Methinks that says it all ! Yes GG can sound a little brusque at times - but then she is writing miles and miles daily - helping 100's of people. When you read up on members BEFORE replying it can help a little and put things into perspective. You have not completed your Profile - it is so helpful when you do :-) When I am not sure of my facts I seek knowledge from those that have the information at their fingertips and use the Search Facility at the top of the page ...

emilybentz profile image
emilybentz in reply toMarz

Yes ive seen her posts. I also know from experience and research.

marram profile image
marram in reply toemilybentz

When people mention experience and research, I have always observed that those who detail their experience, and quote their research sources, and avoid insulting others, come across as much more credible.

helvella profile image
helvellaAdministrator in reply toemilybentz

This response contravenes one or more of the following Thyroid UK Guidelines:

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15. If possible, show a clear distinction between personal experience or opinion and evidence-based information.

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helvella profile image
helvellaAdministrator in reply toemilybentz

This response contravenes one or more of the following Thyroid UK Guidelines:

7. All members should conduct themselves at all times with respect and honesty.

8. We want all members to be comfortable posting here. In order to ensure that any post or comment which causes alarm, harassment or distress to any person, whether or not intended by the poster, may be removed.

12. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.

15. If possible, show a clear distinction between personal experience or opinion and evidence-based information.

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DippyDame profile image
DippyDame in reply toemilybentz

Your comments to greygoose are hugely ill judged and I for one owe her, and other members on TUK, a great deal. She gives up so much of her time to share her vast store of knowledge without expecting anything in return ...apart from a little respect maybe!

I started my thyroid journey knowing only that I am hypothyroid...and eventually became barely able to function. GPs had no idea what was wrong with me. Were it not for TUK members, including Greygoose,, I would now be very ill instead of making a good recovery. I am resistant to thyroid hormone.

In view of your comments 'm sorry to have to point out that you clearly do not know about, or understand, the genetic condition that is RTH (resistance to thyroid hormones) and are therefore not in a position to comment on the treatment those of us who live with it on a daily basis require. It is an extremely complex condition which is thought to be more prevalent than currently recognised

Why, you seem to query, should those of us with RTH need supraphysiological doses of T3? Perhaps a simple analogy (follows) might go some way to explain what is clearly a much more involved process.

T3 receptors in the trillions of cells in the body do just that....they receive T3 from the supply carried in the blood and draw it into the cells where it does it's job.

However, some of these T3 receptors can become inactive for various reasons, thus reducing the amount of T3 that can enter the cells. This lack of cellular T3 then has a negative impact on the health of the person involved.

Imagine trying to throw balls through a net ...

If the net is taught and the holes are big enough and fully open then (say) 50 balls will readily pass through the mesh when aimed at the net. That is, roughly speaking, how T3 enters the cells from the blood.

However, were the net to hang less taut resulting in several/many holes being distorted then all of those 50 balls would no longer pass easily through the net

So, to get 50 balls through the distorted net many more than 50 would need be fired at the net in order to eventually get 50 of them through to the other side.

Where RTH exists, the body requires a large single dose of T3 ( i.e providing a bigger, faster volley) that volley of T3 is thought to overcome the resistance caused by RTH thus allowing an adequate supply of T3 to enter the cells. T3 supply must be consistently adequate and constant and for that to happen to those with T3 more than what you suggest is a "normal" dose is required.

I'm not a medic and I certainly cannot remotely claim to be an expert but I do have a few grey cells left that enable me to extrapolate relevant information from texts, papers etc.

You seem very confident that you understand thyroid treatment based on your "experience and research". It would be enlightening, therefore, if you were to share with members here the research you have sourced which influenced your understanding.

Without that verifiable proof what you say lacks credibility and I feel compelled to say that your conclusions are seriously flawed.

This forum is widely recognised and respected and your words to GG that, "you are completely wrong and i am so sick of seeing you give advice that is going to make people sicker!" - are the reason that I find myself writing this response.

Your words are wrong, rude and wholly inappropriate and I hope you will take time to reflect on them.

I trust that your treatment is keeping you in robust health. but be assured that if you should need any advice or support in the future it is to be found here. I can vouch for that!

Best...

DD

Mermaid238 profile image
Mermaid238

I live in America and I have taken Armour Thyroid for decades. I heard they recently changed manufacturers - I had a problem year ago very bad palpitations only to find Armour 15 mg was lot number for Armour 30 mg - I was taking a 60 mg and 15 mg. We dropped the 15 mg and palpitations gone. Just had new blood tests Wednesday - awaiting results. I am wondering if the new company for Armour has changed their formula and or additives

Joni4ever profile image
Joni4ever in reply toMermaid238

This is a real concern and something to reach out to the pharmaceutical company about. They need to know what you are experiencing. I have done this with botox for migraines.

Mermaid238 profile image
Mermaid238 in reply toJoni4ever

I did let them know - they were the ones who told me the lots numbers did not match - they did nothing - not even a follow u to see if I was okay

Joni4ever profile image
Joni4ever

Hi marigold,

What I don't see is a reverse T3. Your results look a bit like mine. rT3 is needed to see if you are converting. Can you get that tested, too?

greygoose profile image
greygoose in reply toJoni4ever

Hi joni4ever, she won't be converting because she isn't taking any T4. So, here rT3 will be low. Besides, you don't need an rT3 to see if you're converting, you just compare the FT3 with the FT4 - if you have one. :)

emilybentz profile image
emilybentz in reply togreygoose

Wrong. high amounts of t3 also cause high reverse t3. Its your bodies way of saying its too much! Our bodies protect us!

greygoose profile image
greygoose in reply toemilybentz

So, explain to me how one makes rT3 without any T4? Surely you know that rT3 comes from conversion of T4. The thyroid itself doesn't make any.

And, I do wish you would mind your manners. That is not how we speak to people on here.

emilybentz profile image
emilybentz in reply togreygoose

Your reverse t3 rises when you have too much thyroid hormone...its not only from t4!

We can clear this up. Get the reverse t3 checked...i guarentee its high.

greygoose profile image
greygoose in reply toemilybentz

It is only converted from T4. Where else would it come from?

rT3 rises when you have too much T4 to stop you going over the top with too much T3, granted. But, if you're not taking any T4, you're not going to have much, if any, rT3.

Also, high T4 is not the only thing that can cause high rT3 - an infection, low-calorie diets, stress, long-term beta blocker use, high cortisol, low ferritin… There's a long list of things that can cause it. And, just doing the rT3 test will not tell you what is causing it - it isn't always poor conversion the cause.

And, besides, even if her rT3 were high, so what? rT3 is inert. It doesn't do anything. It doesn't cause symptoms, it doesn't block T3 receptors as used to be thought (we now know that it has its own receptors), it's gone from the body in two hours. So, it's hardly likely to be the cause of all the OPs problems. Her problems are caused by low FT3.

But, I would be interested to read where you've got all this information. Perhaps you could post some links?

helvella profile image
helvellaAdministrator in reply toemilybentz

This response contravenes one or more of the following Thyroid UK Guidelines:

7. All members should conduct themselves at all times with respect and honesty.

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12. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.

15. If possible, show a clear distinction between personal experience or opinion and evidence-based information.

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marram profile image
marram in reply toemilybentz

If you are taking T3 only, no conversion is occurring. Or are you suggesting that once the T3 enters the cell, one molecule of iodine is removed from its correct key site, and moved to another in order to creat reverse T 3? And then that reverse T3 is re-released into the bloodstream? I would genuinely like to see evidence of this. People who take T3 only do so because they are not able to utilise the T4 to make T3. IE they do not successfully remove one molecule of Iodine from T4 to make it into T3. So how, may I ask, will their body perform an even more complex process?

If, however, you are implying (as I think you are once I have sorted out your actual statements from your rudeness and rhetoric) that they already have T3 in their system but they add even more which then somehow becomes RT3, please remember that anyone who is taking T3 has already established that their T3 was so low they were unable to function.

helvella profile image
helvellaAdministrator in reply toemilybentz

This response contravenes one or more of the following Thyroid UK Guidelines:

7. All members should conduct themselves at all times with respect and honesty.

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12. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.

15. If possible, show a clear distinction between personal experience or opinion and evidence-based information.

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HLAB35 profile image
HLAB35

Hi marigold22, just updated my original post with links and more. The Dr Dean podcast link on the anxiety website is quite long, but she is very good at explaining how Magnesium works.

SlowDragon profile image
SlowDragonAdministrator

What supplements do you take?

Presumably you know to stop taking any supplements with biotin in a week before any testing. Biotin can falsely affect test results

If testing iron or ferritin, stop iron supplements a week before to get baseline result

marigold22 profile image
marigold22

SlowDragon I am concerned about my high vitamin B12 result. I've been taking high dose multi B vits to make sure I got enough folate (B9?) and B12. Looks like I may have overdone it? I don't take any supplements with biotin. Apart from high dose multi B's I've been taking selenium, zinc, vit C, high dose fish oil, vit D.

SlowDragon profile image
SlowDragonAdministrator in reply tomarigold22

Nearly all vitamin B complex have Biotin in. (B7)

Always stop any B complex a week before testing

I use Igennus Super B complex. Full dose is two tablets per day

I only ever needed one per day. Recently my B12 was too high and folate similar to yours

Now, only taking half a tablet a day and B12 and folate both back within range

marigold22 profile image
marigold22 in reply toSlowDragon

Thank you SlowDragon . I did take a high dose multi B vitamin a day or so before the blood test, so that would have altered the result?

SlowDragon profile image
SlowDragonAdministrator in reply tomarigold22

It might, its impossible to tell

Medichecks have confirmed recently that their tests may be affected by biotin

Blue Horizon, not sure

Generally it's advised to stop a week before.....just in case

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

endocrinenews.endocrine.org...

Handy reason to avoid unexpected NHS tests

SeasideSusie profile image
SeasideSusieRemembering in reply tomarigold22

marigold22

I did take a high dose multi B vitamin a day or so before the blood test, so that would have altered the result?

What B Complex do you take?

Check how much B12 is in it, this may be pushing your B12 level too high.

If it contains B7 - Biotin then it must be left off for 7 days before any blood test (not just thyroid). Medichecks recently confirmed that Biotin is used by the lab in the testing process and it's their recommendation that Biotin is left off for 7 days as it will affect results.

marigold22 profile image
marigold22 in reply toSeasideSusie

My B12 result was - 219 (37.5 - 188) which is over range which is concerning me. I will stop taking it for now. There is Biotin in my High Dose B Complex (by Natures Best) so that is no doubt skewing the result

SeasideSusie profile image
SeasideSusieRemembering in reply tomarigold22

This one?

naturesbest.co.uk/vitamin-b...

There's only 4mcg methylcobalamin, not enough to help at all, certainly wouldn't take you over range.

It's possible that the Biotin has skewed many of these results. If not, then you need to research causes of high B12 without supplementation, because there's no way that 4mcg B12 supplement is going to give you such a high B12 result.

marigold22 profile image
marigold22 in reply toSeasideSusie

It's the B50 high dose b vitamins I've been taking

naturesbest.co.uk/vitamin-b...

SeasideSusie profile image
SeasideSusieRemembering in reply tomarigold22

So that one contains 50mcg B12. If one had a low B12 level and needed to supplement, then around 1000mcg would be the dose until the recommended level had been reached, then our store of B12 is supposed to be good for around 2 years. So 50mcg is a small dose and may not make much difference, maybe more of a maintenance dose if needed.

These B50/B100 type of B Complex aren't well balanced.

And that one contains folic acid which needs to be converted to folate, not all of us do that very well which is why methylfolate is the recommended form.

Hi Marigold - if your T3 is too low, and you have had your gene D102 tested and it is abnormal then this might explain why you are not producing enough T3. As you say it started after being on the same medication, then may be there is a change to your drug.

D2 or D102 belongs to the iodothyronine deiodinase family. It synthesises the conversion of prohormone thyroxin T4 to bioactive T3.

Selenium is essential to the conversion of T4 into active T3. Conversion takes place in the liver, gut, kidneys, and heart. Zinc too is essential too for conversion of T3. Zinc deficiency can affect the body and any deficiencies in minerals and vitamins may affect your mental health.

whitelotusclinic.ca/zinc-se...

An article by Fiona Mc Culloch MD explains the importance of selenium and zinc for

the thyroid.

I do hope the symptoms you are experiencing, improve. Stress does make you feel ill and exhausted. Expect you are taking a selenium and zinc supplement already.

"Zinc, Selenium,& Thyroid Function in Women" is the title of

the article present from search engine.

DippyDame profile image
DippyDame

Ok......but sometimes it's a. good idea to wait a little and re-read a post before pressing 'send'.

Careless words can hurt the reader who has no understanding of how the writer is feeling.

Hope you feel better now.

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