Lost in ignorance, bit scared: Hello. I have... - Thyroid UK

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Lost in ignorance, bit scared

lauriegraham profile image
64 Replies

Hello. I have posted a few times before. My t3 was low and generally people thought I was a poor converter and possibly with central , as tsh low . Symptoms not as bad as many here but low temps, cold extremities, hair loss 9eyebrows, legs, never much on my head!) high cholesterol and other signs.

Energy not bad, do strength training and yoga each a few times a week and cycle etc. I am 65 years old

Got some low dose levo from GP, but didnt feel great on it. Lost confidence. went to a forum where T3 mono or primary is often extolled. Got some t3 from someone who seems trustworthy (tiromel) , took up to 60/70, slow build up, didnt feel different. temps still low.

I guess I could be over adrenalised , and so t3 might not work, lifetime of stress etc

Anyway dont know where to turn, Endo for lipids wants me on statins. I hoped thyroid meds or betterfunctioning might lower cholestorol, it hasnt.

So i feel lost, on my own really . last tests were (stopped t3 24 hours before)

Thyroid stimulating hormone0.05 mIU/L (0.27 - 4.20 mIU/LL)

Free T42.3 pmol/L (12.0 - 22.0 pmol/LL)

Free T32.9 pmol/L (4.0 - 6.8 pmol/L

cholestorol

Cholesterol9.0 mmol/L (2.5 - 5.0 mmol/LH

Triglyceride1.1 mmol/L (0.4 - 2.3 mmol/L

HDL Cholesterol1.5 mmol/L (0.9 - 1.5 mmol/L

Non-HDL Cholesterol7.5 mmol/L

mmol/L

LDL Cholesterol (Calculated)7.0 mmol/L (0 - 3.5 mmol/LH

Cholesterol:HDL ratio6.0

Ferritin low (88, range 30 to 400, (I eat liver etc)

B12 high 822 (range 197 to 771)

Any thoughts about what to do, and what to say to probably a fairly conventional endo?

THANKS

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SlowDragon profile image
SlowDragonAdministrator

stopped t3 24 hours before)

TSH 0.05 mIU/L (0.27 - 4.20 mIU/LL)

Free T4 2.3 pmol/L (12.0 - 22.0 pmol/LL)

Free T3 2.9 pmol/L (4.0 - 6.8 pmol/L

Who did this test?

NHS or private……range for T3 looks odd

Was test done early morning, ideally before 9am

How much T3 are you currently taking

Do you normally split T3 into two or three smaller doses spread through the day …..or do you take as single dose

Day before test…..ALWAYS split T3 into 3 doses spread through the day, taking last dose approx 8-12 hours before test

As you took last dose T3 24 hours before test the result is falsely low …..but result is VERY low

Ft4

Some people are fine with low/no Ft4

But many people find they need BOTH Ft4 and Ft3 at least 50-60% through range

Perhaps try adding in 25mcg or 50mcg levothyroxine and retest in 6-8 weeks

What vitamin supplements are you currently taking

Have you tested folate

Vitamin D, previously you had very very high vitamin D

Have you retested recently

lauriegraham profile image
lauriegraham in reply toSlowDragon

Thanks as alwaysfolate was 13.3 (2.9 to 26.8 range)

Tests were all nhs this time, no t3 24 hours before

t3 taken in nibbles, quarter of 25mcg tab through day up to 2.5 normally (tiromel, i gather can be weak?).

I tried paul Robinson's ct3 to bump up cortisol as morning reading was low, but but again didnt notice a difference

no vit d test this time

so you suggest trying levo again and seeing what happens?

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

So how much T3 in total are you currently taking per day ?

lauriegraham profile image
lauriegraham in reply toSlowDragon

60/65 roughly , my quarters are erratic!

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

Well on T3 you absolutely must take exactly same dose per day

Perhaps try reducing to 50mcg (2 x 25mcg) and add in 25mcg levothyroxine

lauriegraham profile image
lauriegraham in reply toSlowDragon

ok I can try. i worry that the t3 is not having an effect, slight increase in heart rate only but no change in body temperature or cold extremities (when it is cold)

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

Well you can only change slowly……

How much levothyroxine were you taking before changing to T3

What were results on just levothyroxine

lauriegraham profile image
lauriegraham in reply toSlowDragon

Hi. I cannot remember exactly but i started at 50 and went up to 75 I think. I was not converting well and so my t4 was ok but t3 through the floor, I even did RT3 (I gather that is not thought well of here?) and it was high, hence the move to try T3

I cant help but feel something else is happening, hopefully nothing too bad, but given how closely cortisol and t3 work together, and my morning cortisol was so low and evening high. I suspect stress must be in the mix. Also i did a lot of exercise and was fasting a lot and doing keto for a while, i worry that, as they can be stressors, had a negative effect

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

Dieting and low carb diet both lower conversion rate of Ft4 to Ft3

Too much vigorous exercise when only on low dose levothyroxine will lower Ft3

75mcg is only one step up from starter dose

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day

Because of your age standard starter dose of levothyroxine is 25mcg …..and dose is increased SLOWLY upwards over 6-18 months

lauriegraham profile image
lauriegraham in reply toSlowDragon

yes thats the worry re fasting and low carbi have carbed up for 6 months now. i am about 69 kilos so dose would according to that be 110?

starter levo only 25?

thanks again

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

you can’t just stop T3 …..all hormone changes need to be done very slowly

you could reduce T3 a little and add 25mcg levothyroxine……wait 6-8 weeks and retest

lauriegraham profile image
lauriegraham in reply toSlowDragon

thanks, i am struggling to know what make a a difference but will have a go at that regime. Appreciated

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

Thin you should see an endocrinologist

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 or NDT

tukadmin@thyroiduk.org

rogergee profile image
rogergee in reply toSlowDragon

'Well on T3 you absolutely must take exactly same dose per day'

Hi SlowDragon. Would you indeed explaining the theory of this to me please? Thanks in advance.

SlowDragon profile image
SlowDragonAdministrator in reply torogergee

Levothyroxine is a storage hormone

So it’s ok to take different dose on different days

Though some people find even with levothyroxine it’s best to cut tablets to give same dose every day…..rather than alternating ….eg 75mcg levothyroxine one day and 100mcg the next ……instead taking 87.5mcg everyday

T3 is fast acting and directly affecting your metabolism

Important to keep dose same every day

Often very important how you take it too

Some people prefer/need to take as single dose

Others find it important to split as smaller doses 2 or 3 times per day.

Can take many months careful experimenting as to what dose, brand and timings suit you

lauriegraham profile image
lauriegraham in reply toSlowDragon

thank you .. gosh its hard to know how to proceed ..

rogergee profile image
rogergee in reply toSlowDragon

Thanks for that.

shaws profile image
shawsAdministrator

Sometimes it is best if we go by our own 'instinct' and I think you were wise to query.

The following is an excerpt you may find helpful:-

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

nhs.uk/conditions/statins/c...

The following are too low:-

Free T4 2.3 pmol/L (12.0 - 22.0 pmol/LL)

Free T3 2.9 pmol/L (4.0 - 6.8 pmol/L

lauriegraham profile image
lauriegraham in reply toshaws

Thanks Shaws

PixieElv profile image
PixieElv

Hi LauriegrahamYou may know all this, so forgive me if I repeat what you know. Have you made dietary changes to lower your cholesterol?

I had high cholesterol and by cutting out meat it is now very healthy. If you don’t want to cut it all out you may reduce to a few times a week?

Statins are very controversial, especially if you are hypo, so I would recommend looking at diet before taking (more) drugs 😊

Your T4 and T3 levels are really low, so like SlowDragon recommends, you might want to try T4 &3 combination. Do you take it on an empty stomach at least 30min away from caffeine & food?

Personally, I didn’t see an improvement until I switched to NDT, which is prescribed by my (private End). So if T4/3 combo doesn’t work you could still try that. I would give the combo a good 6 months though. Just to make sure.

good luck! I hope it works for you

lauriegraham profile image
lauriegraham in reply toPixieElv

Thanks. Yes i am trying various dietary things. There are a group pf people who exercise a lot and fast who are called lean mass hyper responders and often have very high cholesterol. They even have a facebook group. They are mainly low carb keto. I had assumed I was one of them. they have an explanation for why this happens. It is also possible that exercise and fasting are stressors which inhibits thyroid production and then the cholesterol produced is not taken back up for use via thyroid. T3 doesnt work apparently so well with low cortisol either i gather. it is all very confusing.I had assumed low t4 was because i was on t3 only, and low t3 as it doesnt hang around and i had not taken any for 24 hours?

PixieElv profile image
PixieElv in reply tolauriegraham

So I might be wrong, but aren’t the ‘Hyper responders’ referring to HDLC being high, rather than LDLC?After reading posts on here and elsewhere I also think that stress does impact the thyroid and update of T3. Cortisol interferes and the adrenals suffer, but I can’t quite remember how.

lauriegraham profile image
lauriegraham in reply toPixieElv

Dave Feldman is the person who really put this on the map cholesterolcode.com/lmhr/

PixieElv profile image
PixieElv in reply tolauriegraham

This is really interesting stuff and it would be amazing to see more studies into this. Do these LmHR have a higher rate of Arteriosclerosis?

lauriegraham profile image
lauriegraham in reply toPixieElv

seem to have really low rate, many have calcification tests and are remarkably clear of disease

hackman profile image
hackman

Do you have FT4 and FT3 results from before you started taking Tiromel?

lauriegraham profile image
lauriegraham in reply tohackman

thanks, it was low at bottom of range for t4/3/tsh, especially t3, see below

Folate (serum) 12.0 ug/L > 2.9

TOTAL THYROXINE(T4) 72 nmol/L 59 - 154

THYROID STIMULATING HORMONE 0.89 mIU/L 0.27 - 4.2

FREE THYROXINE 15.7 pmol/l 12.0 - 22.0

FREE T3 3.6 pmol/L 3.1 - 6.8

THYROID ANTIBODIES .

Thyroglobulin Antibody 10.1 IU/mL 0-115

Thyroid Peroxidase Antibodies <9.0 IU/mL 0 - 34

25 OH Vitamin D 102 nmol/L 50 - 200

hackman profile image
hackman in reply tolauriegraham

Based on the above, your conversion rate is 0.22.9 - under 0.25 is considered poor, the lower the figure the worse the conversion obviously - 0.25 - 0.31 is considered intermediate, and over 0.31 is considered good. As yet, I have still to come across someone over 0.31. Accordingly, levo will probably never be suitable for you.

I would also check your source of Tiromel - fake medication has been known - I have been a victim myself.

lauriegraham profile image
lauriegraham in reply tohackman

hi. thanks. goodness, 'never'? .. how does this fit with what SeasideSusie suggests re Levo?

hackman profile image
hackman in reply tolauriegraham

One assumes you are taking the levo as you should - ie at least half an hour before tea/coffee/breakfast etc to ensure full absorption. If so, your conversion rate is poor. If not, give it a chance to be fully absorbed to see if this affects your conversion rate.

If your conversion rate is unsufficient, adding more levo is unlikely to solve your problems.

Regarding the Tiromel - if I were you I would check that it is genuine stock before writing that off as an option.

My conversion rate is lower than yours at 0.18 and I was so sick on levo only. Tiromel has given me my life back so it is worth checking that yours is indeed genuine.

lauriegraham profile image
lauriegraham in reply tohackman

thanks again

SeasideSusie profile image
SeasideSusieRemembering in reply tolauriegraham

lauriegraham

I have no idea how Hackman is working out the ratio but I work it out from information given here (by diogenes if I remember correctly but can't be sure) by dividing FT4 by FT3 as long as both units of measurement are the same and, of course, on Levo only.

So on Levo only you had an FT4 of 15.7 and FT3 of 3.6 so

15.7 divided by 3.6 = 4.36 so your ratio of T4:T3 was 4.36:1

Good conversion is said to take place when ratio is below 4:1 so your ratio was showing poor conversion.

tattybogle profile image
tattybogle in reply toSeasideSusie

SeasideSusie / hackman

T3:T4 ratio ( T3 divided by T4) 3.6 divided by 15.7 =0.229

(when done this way , a higher result = better conversion)

T4:T3 ratio (T4 divide by T3) 15.7 divided by 3.6 = 4.36

(when done this way , a lower result = better conversion)

Although to be honest, i have some serious reservations about assessing conversion definitively by using either of these methods (that simply divide the fT4 and fT3 results ) because they take no account of the wildly differing lab ranges that could have been used for fT4 tests . (and to a lesser extent, fT3 tests)

eg . A blood sample with a 'high' fT4 level done on a platform using a [12-22] range . would be '22'.

but the same blood sample with the same high fT4 level done on a platform using a [7.9-14] range would be '14'

these large differences in fT4 numbers have a significant impact on the results of ratio calculation when done this way.

helvella profile image
helvellaAdministrator in reply toSeasideSusie

Just to point out that the ratio of 4:1 will be consistent for all measurements which are molar (e.g. based on pmol, nmol or whatever).

But the number will shift a bit if the units are by weight (mass) (e.g. based on pg, ng, or whatever) as T4 molecules are heavier than T3 molecules. Closer to 4.9:1.

lauriegraham profile image
lauriegraham in reply tohelvella

thanks

lauriegraham profile image
lauriegraham in reply toSeasideSusie

thanks again..

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

FREE THYROXINE 15.7 pmol/l 12.0 - 22.0

FREE T3 3.6 pmol/L 3.1 - 6.8

This shows you were still under medicated

FT4: 15.7 pmol/l (Range 12 - 22)

Ft4 only 37.00% through range

FT3: 3.6 pmol/l (Range 3.1 - 6.8)

Ft3 low 13.51% through range

Most people on levothyroxine need Ft4 at least 70% through range

Low Ft3……If you were on high exercise regime and low carb …..this won’t have been helping

Ideally you would have increased dose levothyroxine, before considering adding T3

lauriegraham profile image
lauriegraham in reply toSlowDragon

thanks, .. but what about the poor conversion (and high RT3)? I am wondering if i need to get to the bottom of why that is happening?You are all bloody brilliant by the way!

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

SeasideSusie has list of causes of high RT3

lauriegraham profile image
lauriegraham in reply toSlowDragon

thanks

SeasideSusie profile image
SeasideSusieRemembering in reply tolauriegraham

High rT3 can be caused by many things, only one of which has anything to do with the thyroid and that's when there is an excess of unconverted T4 and you will know this from the FT4 and FT3 results.

High rT3 could be caused by low ferritin, by an infection, by low-calorie diets, selenium or zinc deficiency, cortisol issues, stress, dieting, chronic illness, inadequate or low iron, chronic inflammation, high cortisol, or liver issues and any other chronic health issues, and probably several more things.

Other conditions that contribute to increased Reverse T3 levels include:

· Chronic fatigue

· Acute illness and injury

· Chronic disease

· Increased cortisol (stress)

· Low cortisol (adrenal fatigue)

· Low iron

· Lyme disease

· Chronic inflammation

Also selenium deficiency, excess physical, mental and environmental stresses. Also Beta-blocker long-term use such as propranolol, metoprolol, etc. Physical injury is a common cause of increased RT3, also illnesses like the flu. Starvation/severe calorie restriction is known to raise RT3. Diabetes when poorly treated is known to increase RT3. Cirrhosis of the liver. Fatty liver disease. Any other liver stress Renal Failure. A fever of unknown cause. Detoxing of high heavy metals.

Articles

thyroidpatients.ca/2019/01/...

zrtlab.com/blog/archive/rev...

verywellhealth.com/reverse-...

lauriegraham profile image
lauriegraham in reply toSeasideSusie

wow thanks .. so much to investigate

JAmanda profile image
JAmanda

No expert but that T3 doesn’t seem to be having any effect at all! Are you sure it’s legit? I think I’d forget about it and start back on a decent dose of Levo.

lauriegraham profile image
lauriegraham in reply toJAmanda

or could it be that it is not getting into or being used in the cell?

JAmanda profile image
JAmanda in reply tolauriegraham

Yeah but there’s no way of testing for that. All you can do is take meds on empty stomach and wait an hour before eating and drinking and hope they’re absorbed. Those results look like the person is taking nothing at all.

lauriegraham profile image
lauriegraham in reply toJAmanda

yikes!

CoeliacMum1 profile image
CoeliacMum1

If you’re on social media look up or just Google Dr Aseem Malhotra he’s a cardiologist, he’s debunking cholesterol & statins and diet even some people with heart conditions he wouldn’t put on statins, they have a place, but have in past been overly pushed as the magic pill a bit like levothyroxine 🙄According to the positives of taking statins you may gain on average an extra year or two in life expectancy, but majority of people on them the decade or so being on them will have their quality of life reduced by taking them as side effects are high, in some people, chronic enough for some to stop them regardless of advice …the cardiologist has all data regarding this.

I’ve read cholesterol can be genetic and although diet and lifestyle changes can help a bit in some, it still maybe always be on the high side.

It’s also well documented that people with thyroid conditions get high cholesterol, and your other symptoms are hypo in description. I’d find a Thyroid U.K. endocrinologist, there’s a list.

Re cholesterol, My husband was given 6 yrs ago now a British Heart foundation leaflet guidance slightly raised cholesterol.

I tore it up after reading it…I said we’ll try another way first, and if it doesn’t work by your next check in 6 months , we’ll do it their way.

His appointment actually was at 5 months later, he had normal cholesterol.

He still ate eggs meat cheese fatty fish everything he was told to stop…what he didn’t eat was any processed food (not that had that much), cut sugar to bare minimum, (something he did eat too much of) and reduced his starchy carbs, he ate other carbs.

Maybe he was just lucky.

A number of specialists I follow have debunked the Ancel Keys study of demonising fats, and I believe that has been retracted or amended in British Medical Journal.

It’s now believed that sugar and high starchy carbs are the problem… Well the low fat higher carbs eras of 80-90s definitely haven’t produced good data-as more with diabetes and are obese now than before, and heart disease is still one of the biggest killers.

We have to factor in everything, our lifestyle and stresses our diet and exercise, what other underlying conditions we have, some genetically.

We can go round ticking boxes of being in range, but these are not necessarily our sweet spot for good health.

A long process of finding that individual ideal… but not getting too stressed about numbers on the way.

lauriegraham profile image
lauriegraham in reply toCoeliacMum1

thank you, interesting, i agree r Ancel Keys, seed oils and processed foods I suspect big culprit .. there is an alternative agenda from Ray Peat who knows a lot about thyroid and has a big following and he suggests that good carbs, even sugar, can really help the thyroid. where does a person turn?!

CoeliacMum1 profile image
CoeliacMum1 in reply tolauriegraham

Can you post a link to that please interested to look at that.

We are learning even exercise for people with autoimmune disorders should be slower and consistent and not necessarily high impact but I guess again it’s an individual thing.

As women age all our shifts in declining hormones (oestrogen, progesterone and testosterone) can impact others and it’s well known that can include carbohydrates being less tolerated as we age, causing insulin, cholesterol, blood pressure and weight issues.

Many people can still maintain good blood sugar, blood pressure and cholesterol and manage their weight well, but then can get problems in other endocrine areas be it thyroid or adrenal etc, if not one thing it can cause another and sometimes it’s not just what we eat, stress is a big culprit… lots of hormones piggy back on others our bodies are good at robbing Peter to pay Paul… until that day all goes pop!

I eat almost identical to my husband, I’m overweight, he isn’t his blood sugar is excellent but can eat too much sugary things and obviously causes his cholesterol problems with me it’s absolute opposite my cholesterol is bordering on low but my blood sugar 6 yrs ago was a smidgen off being in the pre diabetic range.

I blame trying all free from look a like foods, as once off these and reduced my starchy carbs I was in a better blood sugar range…for a coeliac that’s predominantly rice and maize based foods.

I addressed this area by looking at higher fibre pastas and shifted to brown basmati rice, rarely eat bread (I just don’t get on with Psyllium husk in it all)

A more diverse diet predominantly plant based is looking the most healthier choices…gives our gut more diversity to look after the good gut microbiome.

lauriegraham profile image
lauriegraham in reply toCoeliacMum1

a classic ray peat article and his website, so much on thereraypeat.com/articles/articl...

CoeliacMum1 profile image
CoeliacMum1 in reply tolauriegraham

Thank you 😊

CaptainBeOS profile image
CaptainBeOS

Just picking up on something here and making a hunch:

No one seems to have commented on the very low TSH in your last test and indeed the one before that you posted. (It's a bit of a taboo subject to read significance into TSH, but it has its uses).

If you have a bad batch of Triomel then the TSH would not be suppressed like this.

For TSH to be low like this means:

1) There is plenty of T4 or T3 in your system

2) You have an underactive pituitary gland .

Hight RT3 is an indicator that your deiodinase type 3 (D3) is over active. D3 converts T4 to RT3 and T3 to T2. thyroidpatients.ca/2018/07/...

There are a number of ways overactive D3 can happen:

1) By having too much T4 / T3 entering your system. This can cause your cells to over express D3 as they try to control the situation.

2) If you are seriously ill or injured. This is known as non-thyroidal illness syndrome

3) If you have consumptive hypothyroidism ncbi.nlm.nih.gov/pmc/articl.... In adults this can result from certain cancers / tumours that over express D3.

Given your result on Levo alone was not that terrible I would suggest the following has happened to yield this latest blood result:

Your T3 dose is now so high that it has caused Deiodinase type 3 to kick in very strongly, which is resulting in the T3 being converted to T2 and flushed from your system very rapidly. This is why your bloods are very low 24 hours later in spite of such a high dose. Given your dosing method you should retest with just a 12 hour break to see if it looks any better.

Normally on such a high T3 dose you would be completely hyper. Instead you describe being hypo. This would indicate that you insufficient T3 is getting to your cells in spite of this dose.

So this points the finger at chronically overactive D3 as a primary condition or a general thyroid hormone resistance (where the overactive D3 is a secondary condition resulting from a higher need for TH). There's probably other things I have not thought of.

You should see an Endo to confirm all this. If it is the case then you are likely to need more T4/T3 to break through the barrier.

Also, you might do better re-introducing T4. T4 is known to raise the heart rate (it's one of the adverse side effects that in this case could actually be quite useful).

lauriegraham profile image
lauriegraham in reply toCaptainBeOS

This is very helpful,I thought the same re the tiromel and low tsh and also my heart rate slightly increased since it, if not other signs like temp so its doing something

High b12 can be a bad sign too?

So a possibility of other illness driving this? a bit worrying perhaps?

CaptainBeOS profile image
CaptainBeOS in reply tolauriegraham

The thyroid is a very influential organ and everything you describe can be simply down to insufficient thyroid hormone. But, yes, there is the possibility that something else is driving things. It's also possible that being hypo thyroid is causing damage that is then fueling the problem.

Root causes can be very hard to find.

The only way to be sure if it's just thyroid is to try as hard as possible to get euthyroid (that is neither hyper nor hypo), then see what's left when things settle down.

I've had to play that journey myself having had thyroid cancer, Lymphoma and non-alcoholic fatty liver disease.

I don't know much about B12. Apparently too much in your blood could be a sign of underlying illness. healthyeating.sfgate.com/hi...

Liver and kidney are ones to check out as they are closely related to thyroid:

High B12 can be a sign that the liver is damaged and releasing its contents into the blood stream. One possible and very common cause is fatty liver diseased (1/3 of the population have this), which incidentally can be caused / made worse by being hypothyroid. Usually the first indicator is elevated liver enzymes in the blood, which I had. A very easy test your GP can arrange. I fixed the problem by going T-Total and cutting down on animal products (very sad indeed) and taking T3. The liver loves T3. High T3 reduces the risk of fatty liver.

The liver has a two way relationship with thyroid hormone. It is responsible for converting T4 to T3 and won't do so as well if it is damaged.

Kidneys also have a two way relationship with thyroid hormone. For example in Addison's disease Cortisol (produced by the adrenal glands on the kidneys) is suppressed and this can result in Hypothyroidism (ncbi.nlm.nih.gov/pmc/articl.... But, but the same token, low thyroid hormone impairs kidney function and that can lead to reduced cortisol production among other things (like high uric acid and gout), this is most likely what is causing your cortisol to be low. Almost everyone on this forum has been down that road. Again a bunch of kidney function blood tests can rule out anything sinister.

Most likely the high B12 is the knock on effect of hypothyroidism.

lauriegraham profile image
lauriegraham in reply toCaptainBeOS

Apologies, i didnt reply to this, this is really interesting and helpful if a bit worrying. . In terms of moving forward,i assume i would need a quite extraordinary and nuanced endo to help explore? do they exist? My hunch is it revolves around adrenal/hpa axis stuff

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

There are thyroid specialists

They usually specialise in thyroid, adrenal and pituitary as these are all so closely entwined

Get the list from Thyroid U.K.

Have you had ultrasound scan of thyroid

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator in reply tolauriegraham

Are you taking any vitamin B complex or B12?

High B12 can be deceiving

Paradoxical B12 deficiency

b12oils.com/paradoxical.htm...

lauriegraham profile image
lauriegraham in reply toSlowDragon

gosh .. so interesting .. thanks .. i will need time to digest .. i occasionally take b12 .. i know some people say that blood levels do not mean enough and that injections are the thing that works .. the plot continues to thicken!!

Josephineinamachine profile image
Josephineinamachine in reply tolauriegraham

This is a helpful link from SlowDragon . (Thank you Slowdragon). After reading this from another post I started taking B2 only (I haven’t taken B vits at all but have had consistently high B12 results) and also ionic molybdenum (Amazon) to see if I need help converting. Not sure I feel any different but it’s early days.

SlowDragon profile image
SlowDragonAdministrator in reply toJosephineinamachine

I had ridiculously high B12 for years (not supplementing) and oodles of low B12 symptoms

Adding a vitamin B complex was highly beneficial

Josephineinamachine profile image
Josephineinamachine in reply toSlowDragon

Hi SlowDragon thank you - did/do you take all B vits and did it help with fatigue and also lower the high B12 in your bloods?

SlowDragon profile image
SlowDragonAdministrator in reply toJosephineinamachine

Yes….low vitamin D and low B vitamins tend to go together

After starting to improve my low vitamin D I developed peripheral neuropathy. (More on my profile)

I read up how when you improve vitamin D you need more B vitamins

drgominak.com/sleep/vitamin...

Josephineinamachine profile image
Josephineinamachine in reply toSlowDragon

Ah, thank you. I've just read your bio as well - really helpful thank you. I cannot tolerate T3 - heart rate way too high and very anxious and can't split it because it always makes me sleepy weirdly. I see your splitting your Levo now - does this help with the fatigue? You say you feel more relaxed and have more energy I think? Do you have to be careful with food? I think I'll take all the Bvits now except B12? Thank you!

SlowDragon profile image
SlowDragonAdministrator in reply toJosephineinamachine

I have just changed levothyroxine to twice a day ….rather than 3 times…..mid afternoon dose levothyroxine was messing with my afternoon tea and (GF) cake!

T3 is less fussy how long to avoid food and drink

But yes….astonished how different it’s been splitting levothyroxine into smaller doses (62.5mcg at 11pm and 6.30am)

Waiting to retest after 8-10 weeks see if results show anything

When I started taking T3 it would make me incredibly sleepy……but that improved after month or so

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