advice for my bro how to proceed: so my brother... - Thyroid UK

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advice for my bro how to proceed

mlc2009
mlc2009

so my brother got a bloodtest via medichecks, it shows

HYROID STIMULATING HORMONE *7.98 mIU/L 0.27 -4.20

FREE THYROXINE 19.600 pmol/L 12.00 -22.00

FREE T3 5.25 pmol/L 3.10 -6.80

He went to NHS GP, who said TSH can fluctuate so he should come back in 2 months to re-test and also test antibodies, the issue is that he is moving to uni in sept

anyway we got another bloodtest this week and it came back

THYROID STIMULATING HORMONE *9.58 mIU/L 0.27 - 4.20

FREE THYROXINE 19.900 pmol/L 12.00 - 22.00

FREE T3 6.22 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL 0.00 - 34.00

so no antibodies, what do we do next? I'm thinking about booking him an appointment with a private doc ( who I know is sympathetic to thyroid patients ) and hoping he will write a prescription for levo, and then he can write to GP?

If I book another NHS appointment now, it will be a non emergency and he will have to wait a month for the initial appointment, then 2 weeks for a bloodtest, then another month for an appointment to discuss said results

31 Replies
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SlowDragon
SlowDragonAdministrator

Next step is to get vitamin D, folate, ferritin and B12 tested.

Post results and ranges if you have them already

Also, if possible an ultrasound of thyroid.

10-20% of Hashimoto's patients never have raised Thyroid antibodies. An ultrasound can examine thyroid. Hashimoto's is clearly visible, it turns Thyroid into granular texture

thyroidpharmacist.com/artic...

Do you have Hashimoto's? Or other family members have any autoimmune diseases ?

mlc2009
mlc2009
in reply to SlowDragon

ACTIVE B12 121.000 pmol/L 25.10 -165.00

FOLATE (SERUM) 4.44 ug/L 2.91 -50.0025 OH

VITAMIN D 82.8 nmol/L 50.00 -200.00

FERRITIN 84.4 ug/L 30.00 -400.00

He is currently supplementing with 1000iu of vitamin D per day

an ultrasound of thyroid is unlikely on the NHS, when its like sticking pins in eyes to get a script of levothyroxine.. are you telling me that an ultrasound is necessary before T4 is prescribed?

No family history.. but I self medicate, I don't want him to do the same

SlowDragon
SlowDragonAdministrator
in reply to mlc2009

Just read some of your other posts ....seems similar situation. High TSH, but high FT4 and FT3

Does he have hypothyroid symptoms? Is it affecting his life?

If not....perhaps just best left untreated

mlc2009
mlc2009
in reply to SlowDragon

Yeah he has unexplained low mood, tiredness and horrible sleep

I have similiar blood tests yet I feel fine mentally but also suffer from sleep and bowel issues

SlowDragon
SlowDragonAdministrator
in reply to mlc2009

A private ultrasound is apparently about £300-400

His folate is on low side. Supplementing a good quality daily vitamin B complex with folate in (not folic acid) may help

Also ferritin should be half way in range, eating liver or liver pate once a week should help improve

Low stomach acid can be cause of low vitamins.

Gluten intolerance can be an underlying issue

GP can run coeliac blood test (or get one online) before changing to strictly gluten free diet for 3-6 months. If it helps stick to it

mlc2009
mlc2009
in reply to SlowDragon

His coeliac blood test was fine

i'm sure getting all his minerals up to speed would be good, but do you really think lowish ferritin and folate are the cause of his High TSH and his low moods?

I have been through this all before, folate perfect.. vit d, vit b12, perfect..yet I had High TSH but normal and high normal FREET3 and Free T4, its been like this for years. No one can explain why, I've also had a thyroid ultrasound done when I had lymph nodes in my neck, normal

Sometimes the only option is thyroid medication, its at least worth a try. I swear, its easier to get pharma grade methadone and heroin on the NHS, than it is to trial T4

SlowDragon
SlowDragonAdministrator
in reply to mlc2009

NHS is not interested in root causes of invisible long term chronic conditions.

Certainly not interested in low vitamin levels

Poor gut function is often linked to hypothyroidism. Which causes which.....They both become a vicious circle, spiralling downwards

Low stomach acid is often an issue

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Lactose intolerance, gluten intolerance, gut infections, H Pylori etc

mlc2009
mlc2009
in reply to SlowDragon

If they aren't interested in them, then they certainly won't take low stomach acid, Lactose intolerance, gluten intolerance, gut infections, H Pylori etc seriously, and I don't have a bottomless pit of money im afraid to test privately

His gut function is fine, yet he has high TSH, my gut function is poor, I also have High TSH

my original question stands, does anyone have any info on private doctors working with NHS docs?

SlowDragon
SlowDragonAdministrator
in reply to mlc2009

Thyroid Uk has list of recommended thyroid specialists

please email Dionne at

tukadmin@thyroiduk.org

mlc2009
mlc2009
in reply to SlowDragon

I have seen them, non in Manchester im afraid, thank you for your help though. I shall source the T4 myself, if he feels better, we know the root cause, if he doesn't, then we know its not thyroid

mlc2009
mlc2009
in reply to SlowDragon

I actually felt better on T3 only ( probably due to my high RT3 ) getting NHS to test for RT3, chances of me winning lottery, if he doesnt feel beter on t4, I shall test RT3, then try him on T3

"NHS is not interested in root causes of invisible long term chronic conditions.

Certainly not interested in low vitamin levels"

This is so true. Never was the phrase "establish & treat the underlying cause " So emphatically ignored as it is currently in the NHS.

Lovecake
Lovecake
in reply to SlowDragon

Why do you say B complex with Folate, not folic acid? When my folate level was low, the GP put me on folic acid (which made me have head aches so I couldn’t take), also recently my daughter had blood tests and her folate level was low. Her GP put her on folic acid too. (She is 27).

SlowDragon
SlowDragonAdministrator
in reply to Lovecake

Folic acid is not the same as folate

chriskresser.com/folate-vs-...

Many Hashimoto's patients find folate easier to cope with, perhaps because they may have MTHFR issues

wellnessmama.com/27148/mthf...

If you have low folate you likely have low B12 too

A good vitamin B complex will supplement ALL the B vitamins including B12

Lovecake
Lovecake
in reply to SlowDragon

Thank you SlowDragon for your invaluable advice 🙂

mlc2009
mlc2009
in reply to SlowDragon

Managed to see private GP today, he tried to push mitrazipine on him, finally gave him and gave him some t4, so will trial that for a bit

SlowDragon
SlowDragonAdministrator
in reply to mlc2009

Standard starter dose of Levothyroxine is 50mcg.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people also find Levothyroxine brands are not interchangeable. Once your brother finds a brand that suits, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do not get on well with Teva brand of Levothyroxine. Best avoided. Though it is the only one for lactose intolerant patients

Blood should be retested after 6-8 weeks

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Glad to hear he refused Anti-D.

mlc2009
mlc2009
in reply to SlowDragon

I've been researching thyroid for quite a bit, usually a high TSH and normal/high FT3/FT4, is due to RT3. T3 only to clear the receptors seems to be the norm.. However, lets see how he goes on with T4

I'm currently taking T3 again, Im keeping a journal to see if it actually helps with my dry skin and bowel issues

humanbean
humanbean
in reply to mlc2009

A few years ago I had low in range Free T4, low in range Free T3, and very high (well over the range) Reverse T3.

I took T3 only for a while in the hopes of eliminating my reverse T3. Well, it worked. Then I weaned myself off the T3 - my doctor told me I only had subclinical hypothyroidism so I wasn't really ill - and spent some time unmedicated.

Guess what? My Reverse T3 ended up being high again.

The only real "cure" for high Reverse T3 is to find out what is causing it.

Please note that Reverse T3 has its own receptors in the body and doesn't block receptors for ordinary T3. This idea that the action of T3 gets blocked somehow by Reverse T3 turns out to be wrong.

Two articles discussing Reverse T3 that might interest you :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Diogenes, the person who started the above threads, is one of Thyroid UK's advisors, and does research into the thyroid.

SlowDragon
SlowDragonAdministrator
in reply to mlc2009

As you both seem to have genetic condition

Have you considered DIO2 gene test?

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

The fact that you and your brother both have thyroid issues points to a genetic cause.

His blood test results, Free T3 high in range but TSH not suppressed is indicative of Impaired Sensitivity to Thyroid Hormone, also known as Thyroid Hormone Resistance. This is genetic and requires very high (often above range) levels of T3 to overcome the resistance.

mlc2009
mlc2009
in reply to HughH

25mcg of t3, puts my tsh below 1. Sound about right?

HughH
HughH
in reply to mlc2009

Do you feel well on your current dose of T3? Having TSH below 1 does not work for many and they need higher doses of T3.

mlc2009
mlc2009
in reply to HughH

Many people warn of going too high with T3, but having researched thyroid resistance, there are people going as high as 150mcg. I might try T3 again and see if it improves, as I said, I don't have many symptoms. My brother has periods of low mood etc

My only complaint is bad skin, slow transit constipation

HughH
HughH
in reply to mlc2009

Doctors warn that going too high with T3 is dangerous as they assume that it will cause hyperthyroid symptoms such as high heart rate and this can be dangerous. This is not the case and many people can take high doses of T3 without any hyperthyroid symptoms.

The treatment of ISTH with T3 was developed by Dr John Lowe in the USA. He had the condition and took 150mcg of T3 once a day from about the age of 20 until he died in 2012 at age around 66 (he was in perfect health and his was an accidental death).

He treated many people and found that T3 dosages ranged from 50 mcg to 500 mcg although most require dosages between 100 and 150 mcg.

mlc2009
mlc2009
in reply to HughH

The issue with T3, is of course supply. NHS won't give it, so sourcing it privately is only option, so then becomes a legitimacy question

However, I have two lots so I will try again and ramp myself up whilst measuring temps and pulse

mlc2009
mlc2009
in reply to HughH

Just looked up my old results, and this was after 25mcg of t3

THYROID STIMULATING HORMONE 0.27 mIU/L 0.27 - 4.2

FREE THYROXINE * 9.0 pmol/l 12.0 - 22.0

FREE T3 * 10.4 pmol/L 3.1 - 6.8

SlowDragon
SlowDragonAdministrator
in reply to mlc2009

Assuming last dose of T3 was twelve hours prior to test, this result suggests you were over medicated on T3 and needed some Levothyroxine as FT4 was too low

Taking virtually any amount of T3 significantly lowered TSH, so then need Levothyroxine as well

What are your vitamin levels like ?

mlc2009
mlc2009
in reply to SlowDragon

Vit D top of range ( used to take 5000IU per day ) Vit B12 same, Had b12 injections.. ferritin lower end of normal range ( I could take iron tabs, but I find that they have to be taken before any milk, or thyroid and dosage timing was a pain )

I made sure my vitamins etc were taken care of, I spared no expense in finding out what my issues are. My RT3 was high though a few years ago, no idea if thats gone down as I never took t3 long enough for it to " clear "

HughH
HughH
in reply to SlowDragon

T4 is not an active hormone but needs to be converted to T3 to become active.

T3 is the active thyroid hormone and the Free T3 value is the best indication of the amount of T3 available for use by the cells. Free T3 above range is not an issue unless you are overstimulated (have hyperthyroid type symptoms).

Therefore when someone is taking significant amounts of T3 the only blood test which really matters is the Free T3. There is no need to add Levothyroxine to try to keep FT4 within the normal ranges.

SlowDragon
SlowDragonAdministrator
in reply to HughH

Many people need good levels of both FT4 and FT3.

Yet some can only do well on T3. Not able to tolerate any T4

Everyone is different.

And it seems even an individual has different need over time. Perhaps initially managing on Levo only, but later needing addition of T3. Or perhaps eventually only T3

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