Post fuming. : I firstly want to thank all of... - Thyroid UK

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Post fuming.

Jones1969 profile image
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I firstly want to thank all of the wonderful people on here who have educated themselves on what is a very complex issue, and then take the time to pass on that education to others.

I posted on here that a GP at my surgery had changed my prescription without consulting me. I was upset and angry in a way I haven't been for a very long time. I spoke to that GP, to no avail, his training said I was over medicated and that it was his responsibility as he is the prescriber, I pointed out that I was not over medicated, my FT3 was not even half way through range, he said that didn't matter my FT4 was over range and TSH too low . I was getting nowhere, he decided to pass me on to my registered GP who I spoke to today. He has left me on my current dose of Levo, on the basis of my FT3. Retest on a morning draw in 6-8 weeks. I may get a private test in the meantime to look at optimising my vitamin levels as my conversion is obviously not great. Also maybe test for reverse T3. The last vitamins I had checked were in January. I was put on folic acid as folate too low. This is not the first time I was put on folic acid for folate anaemia a year ago too. I'll update when new results are in.

Again thank you.

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SlowDragon profile image
SlowDragonAdministrator

Very little point testing Reverse T3

Essential to test vitamin D, B12 and ferritin as well as folate

What vitamin supplements are you currently taking?

Post from 29 days ago

healthunlocked.com/thyroidu...

Shows vitamin D, ferritin and B12 are all slightly low

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Ferritin at least half way through range

B12 at least over 500

TSH was far too high just 29 days ago

Low folate

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

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

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

With B12 result below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

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

healthunlocked.com/thyroidu...

healthline.com/nutrition/me...

Jones1969 profile image
Jones1969 in reply to SlowDragon

Thank you. I take Ingennus already twice daily, I stopped taking the liquid B12 so I'll resume that to put levels up. I also take a daily dose of selenium and Nutrizing vitamin D with K2 and magnesium, usually 3-4 times a week, will start to take daily, always taken directly after main evening meal. I take levo on its own in the morning, evening didn't suit me. The rest of my supplements and meds are two hours after levo, for those that are twice daily, the rest I take bedtime.

SeasideSusie profile image
SeasideSusieRemembering

Jones1969

Please don't waste your time or money on getting a reverse T3 test, it is very expensive and takes 4-6 weeks. The test can tell you if your rT3 is high but it can't tell you why it's high and there are many reasons for high rT3 and only one of them is to do with the thyroid which is when there is an build up of unconverted T4.

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-...

You already know that you have a high FT4 which isn't converting well to FT3 as your results show so you don't need a rT3 test to tell you have unconverted T4.

FT4: 22.5 (11.20-20.20)

FT3: 4.6 (3.20-6.80)

What you need is less Levo and the addition of T3 but that's not easy to get prescribed on the NHS.

Dr Toft, leading endocrinologist and past president of the British Thyroid Association, wrote an article in Pulse magazine (the magazine for doctors) which is relevant here

Question 6:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and show your doctor.

He also wrote a more recent article which says that T3 may be helpful for many patients:

rcpe.ac.uk/sites/default/fi...

In particular:

….It is instructive to consider the history of thyroid hormone replacement in order to appreciate that many of our policies have, to some extent, been accidental rather than planned.

Thyroid extract was first used some 125 years ago with good effect and remained in widespread use until the 1950s when a suitable synthetic LT4 preparation gradually supplanted it. The doses employed were 200–400 μg daily.

Although T3 was discovered as the second thyroid hormone in 1952 it was not used to any extent therapeutically as patients seemed content with LT4 alone, long before the demonstration that circulating T3 was largely derived from deiodination of extrathyroidal T4.

The seismic shift in the treatment of hypothyroidism, however, was the result of the development of sensitive assays for TSH which showed that, in order to restore serum TSH to normal, the dose of LT4 required was of the order of 75–150 μg daily. Higher doses caused suppression of TSH consistent with hyperthyroidism. The resultant dose reductions were tolerated by the majority of patients but this was the beginning of significant dissatisfaction with adequacy of the recommended treatment of primary hypothyroidism which remains problematic today. The previously high doses of LT4 would, by the law of mass action, have overcome any impaired D2 activity in affected patients.

Little attention has been given to a study, important in retrospect, which showed that it was difficult to increase serum T3 into the hyperthyroid range with LT4 unless serum free T4 concentrations were markedly elevated at around 35–40 pmol/l. This was an elegant demonstration that exogenous subclinical hyperthyroidism was a different entity from endogenous subclinical hyperthyroidism, even although serum TSH was suppressed in both conditions. In other words, a low serum TSH concentration in patients taking LT4 did not necessarily indicate overtreatment.

In short, what he is saying is that for Levothyroxine to be effective, the patient needs a dosage between 200 and 400 mcg daily. But since the focus of the medical profession had shifted to the TSH, the medical profession has erroneously decided that the TSH has priority over the wellbeing of the patient.....

Maybe you can use this information to persuade your GP to refer you to an endo to request a trial of T3. Choose your endo carefully as most are diabetes specialists who have little to no knowledge of treating the thyroid. Send for the list of thyroid friendly endos from Dionne at ThyroidUK:

tukadmin@thyroiduk.org

then ask on the forum for feedback on any that you can travel to.

Jones1969 profile image
Jones1969 in reply to SeasideSusie

Thank you. As always I'm grateful for any information. Have requested the list, fingers crossed one is nearby and NHS.

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