Still not feeling great even through results lo... - Thyroid UK

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Still not feeling great even through results look OK?

Axleg profile image
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I've fallen through the gaps in the NHS after my consultant left in Jan 21 and have not seen anyone for 2 years now. There is no blame, the NHS has been through the ringer with Covid and that's just how it was/is. I took it on myself to get the Blue Horizon Platinum private test (you get a great discount though Thyroid Uk) To me they look OK but I still wake up feeling tired and have issues concentrating and my energy levels are on the floor. My nails are brittle and my eyes are dry and itchy quite often, this may or may not be related but we blame Thyroid for everything if we've had issued for years which I have.

When the results were taken I was on 20mg of T3 Levo Thyronine on waking and then 10mg Levo Thyronine and 75mg of Thyroxine before bed, nothing taken the morning of the test. It looks like I am over active (but why do I feel lethargic)? and TSH is suppressed but no surprise being on T3. Do I drop down a bit on the T3 and up my T4 or do you think something else is needed, Bit D is low but OK.

I've attached the full results as a photo as there is a lot of info. Any help is much appreciated.

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Axleg
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Lalatoot profile image
Lalatoot

It could be that you need more levo and less lio as you say. Some folks manage with low for while others need it higher in range when on combo. I agree with your suggestion and would drop lio by 5mcg first. A reduction in lio may raise your ft4 results a little.I would then wait ideally 6 weeks and do basic bloods.

Then add in 12.5 or 25mcg levo. Small changes 1 thing at a time done slowly are what you need at this stage .

Axleg profile image
Axleg in reply to Lalatoot

Thanks for the reply, it looks like thats the way I need to go. I'm back in the NHS loop now so should get to see someone finally and see what views they have.

SeasideSusie profile image
SeasideSusieRemembering

Axleg

First of all, I'd just say don't bother wasting money on a platinum test again. The only difference between platinum and gold is that the platinum tests reverse T3 and it's a red herring. The test can tell you if your rT3 is high but it can't tell you why, and there are many, many causes of high rT3 and only one is to do with thyroid - when there is an excess of unconverted T4 and that is shown by FT4 and FT3 results.

I was on 20mg of T3 Levo Thyronine on waking and then 10mg Levo Thyronine and 75mg of Thyroxine before bed, nothing taken the morning of the test.

Bit of a mix up there, or maybe predictive test. T3 is liothyronine not Levo Thyronine. Levo is T4 (thyroxine). To avoid confusion, just call it T3, we all know what that means.

Last dose of Levo should be 24 hours before test, last dose of T3 should be 8-12 hours before test (adjust time and split day before if necessary).

Going through your results:

CRP isn't bad, the lower the better. As it's an inflammation marker then raised CRP indicates inflammation somewhere.

Ferritin is almost top of range, do you supplement, or maybe you ate an iron rich meal the night before? It can also be raised when inflammation or infection is present.

Cortisol looks OK.

Thyroid antibodies nice and low so don't suggest autoimmine thyroid disease (Hashimoto's)

Vit D could be higher. The Vit D Society and Grassroots Health both recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommendeding at e4las 125nmol/L.

B12 of 388pmol/L = 525pg/ml which could be better. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

You might want to consider supplementing with a good quality, bioavailable B Complex containing methylcobalamin and methylfolate if you don't already do so.

TSH: 0.05 (0.27-4.20)

FT4: 12.1 (12-22)

FT3: 7.21 (3.1-6.8)

It looks like I am over active (but why do I feel lethargic)? and TSH is suppressed but no surprise being on T3.

You are correct about the T3 suppessing TSH. What jumps out about these results is your barely in range FT4 and I think this is why you may feel lethargic.

When on combination thyroid hormone replacement, we are all individual in where we need our FT4 and FT3 levels to feel well. Some people are fine with a low FT4 as long as FT3 is in range. Some of us need both FT4 and FT3 in the upper part of their ranges - I am one of these people, your level of FT4 would have me bed bound!

I think you need more Levo, this will increase your FT4 level and as this will possibly also increase your FT3 to some extent, depending on how much natural conversion you still have, you might need to reduce your T3 dose slightly. It takes a lot of gradual tweaking to find the right combination of Levo and T3 to find your sweet spot.

Me1157 profile image
Me1157 in reply to SeasideSusie

Please out of respect for us that have felt the bad side effect of having reverse T3 - will you kindly stop saying it a red herring. Are you aware than when you do this, you sound just like that those endo that say there's nothing wrong with us and it's all in our heads as our TSH is ok. Unless of course that you have had high reverse T3 yourself and felt no bad side effects. Thank you

SeasideSusie profile image
SeasideSusieRemembering in reply to Me1157

Me117

Are you aware of just how many reasons there are for raised rT3? Here are a few:

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-...

Unless of course that you have had high reverse T3 yourself and felt no bad side effects

Yes, indeed, I have.

4 years ago I actually tested rT3 after I started adding T3 to my Levo (I was unaware of all the reasons for raised rT3 at the time). At that time my results were

rT3: 22 (10.0-24.0)

FT4: 18.26 (12.0-22.0)

FT3: 6.14 (3.1-6.8)

I tested again 6 months later:

rT3: 29 (10.0-24.0)

FT4: 15.57 (12.0-22.0)

FT3: 5.9 (3.1-6.8)

Hardly a case of excess unconverted T4.

I never found out the cause of my raised rT3 and I haven't bothered to spend the money again or time waiting for the test to come back.

As I said, the test can tell you if you have raised rT3 but not why, so what's the point in testing?

Me1157 profile image
Me1157 in reply to SeasideSusie

So you know the reason as to why you don't feel well, that's why you'd take the test. Perhaps the science (as it's in the dark ages with thyroid issues), hasn't caught up yet with the real as to why we get high reverse T3. When you state it's a red herring and quote all your labs, again respectfully your experience could be totally different from others. We are all more than a lab test. If we all relied on them we'd be in worse shape than we are now. It's how you feel that matters.

Axleg profile image
Axleg in reply to SeasideSusie

Thank you very much for the quick and thorough reply, that is very useful. I did move on to 100mg of T4 and dropped to 25mg T3 after the results so fingers crossed we'll see how that goes. I will look into the B12 supplement, I was thinking of the Wellman 50+ daily supplement which has, all the Vit's including B1,2,3,6, and 12 plus Iron, Tiamin, Selenium and Iodine to name a few, all of which I understand should be a benefit to me, but is that overkill?

Thanks once again.

SeasideSusie profile image
SeasideSusieRemembering in reply to Axleg

Axleg

I was thinking of the Wellman 50+ daily supplement which has, all the Vit's including B1,2,3,6, and 12 plus Iron, Tiamin, Selenium and Iodine to name a few, all of which I understand should be a benefit to me, but is that overkill?

No, don't bother. We don't recommend multivits here for quite a few reasons. They contain too little of anything to help raise low levels or deficiencies, tend to use the wrong form and least absorbable of active ingredients, and often contain things we should test for first and only supplement if we are deficient, eg calcium, iron, iodine. If it contains iron then this affects absorption of everything else, iron should be taken 2 hours away from all other supplements. If it contains B12 asnd Vit C then the Vit C affects the absorption of the B12, again there should be a 2 hour gap.

Iodine in particular should be tested first. Iodine solution used to be used to treat hypERthyroidism so can make hypOthyroidism worse. If iodine is tested and found to be deficient then supplementation should be under the guidance of an experienced practioner.

Best to supplement what is necessary after testing.

For a B Complex I have used Thorne Basic B for a long time and always been happy. However, it's quite expensive so I have bought some of this one to try when I've finished the last of my Thorne. The amounts of the vitamins are very similar, it's liposomal which is said to absorb better, there are no unnecessary added ingredients and better priced:

amazon.co.uk/Liposomal-Vita...

If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.

When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).

Axleg profile image
Axleg in reply to SeasideSusie

Thanks very helpful, I'll give that a go.

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