Frees at top of range - should I consider Levo decrease?

[Bearo]

My last post discussed my blood results from 19 April.

TSH. 0.01. (0.27-4.2)

FT4. 24.9. (12-22)

FT3. 6.5. (3.1-6.8)

I am on 100 Levo. I said that I wasn’t sure my symptoms were thyroid related, especially as I feel much the same with my high frees as I did when I started with below range FT4.

As I haven’t requested my results from my GP surgery for their test on the same day I don’t think they have looked at the result , so I’m continuing my 100mcg Levo under the radar. But I’ll have to ask for them soon as I want to request an iron panel and serum cortisol to check they are not preventing Levo getting from my blood to my cells. I also want a referral to check for Central Hypothyroidism.

I’m sure I’ll be asked to reduce Levo. On the one hand I want to keep my present dose as I don’t feel over medicated. On the other hand I’m considering suggesting 4x100 + 3x75 as a slight reduction to bring my frees down a little and maybe raise TSH a little. Either way, the only symptom likely to change is my poor sleep - the only thing that has slightly improved with my dose increases.

So my question is - ask to stay on 7x 100 or suggest a slight reduction?

[radd]

Bearo,

Your results show too high FT4 with that level of FT3.

Regarding thyroid hormones not doing their job, if nutrients/iron are optimal & cortisol is sufficient I would be looking at possible elevated antibodies if you have Hashi. Bodily inflammation is very destructive (think aches & pains) and Datis Kharrazian says capable of decreasing a cell’s sensitivity to thyroid hormones by an immune response on receptor sites.

Another thing to check would be TBG (thyroid binding globulin) as low levels can cause too high 'frees' which again (according to my mate Datis😀) doesn’t give hyper symptoms because TSH is normal (as in naturally corresponding with 'total' thyroid hormones, even when TSH is 'artificially' suppressed by T3 meds) and can lead to thyroid receptor-site resistance through a continued saturation.

Both of these scenarios would keep you hypothyroid by not allowing T3 into the cells where it becomes active.

I wouldn’t stay over-range in T4 but reduce Levothyroxine. More is not always better and it is easy to go over ones sweet spot. You are obviously a great converter so a reduction should still keep adequate FT3.

The treatment for central hypothyroidism is the same as primary or secondary, which is thyroid hormone replacement meds.

[Bearo in reply to radd]

Thanks for your detailed reply which included some things I’ve not read before. I was just reading the other day about inflammation being a cause of back ache, and you’ve just added that it could lead to less receptive cells, so that’s worth considering. Should I try to get a test for that (is it CRP?) or just change diet?

The TBG bit went over my head, but I’ll look at that, thank you. At least there’s a test for that, I think?

[radd in reply to Bearo]

Bearo,

Yes, a TBG test measures the proteins that move thyroid hormone around your body.

Inflammation can be massive in influencing thyroid physiology, and if you have Hashi, allowing inflammation can predispose you to other autoimmune disease.

Diet is good place to start, certainly gluten free, possibly dairy free. Also supplementing Vit D, fish oils, Vit C, anything known to reduce inflammation and calm immune responses. I'm a big fan of curcumin.

[Bearo in reply to radd]

Very useful, thanks.

[shaws Administrator]

Did you allow a 24 hour gap between last dose of levo and the test and it should be a 'fasting' blood draw and at the earliest? The main question is 'how do you feel on this dose? If you feel fine, then this is the dose that you need.

[Bearo]

That’s the thing, Scrumbler, I feel ok. Was hoping for more energy, less back ache, sharper brain but I feel the same with under range FT4 as over range FT4 with high FT3.Maybe a slight reduction, then.

[Bearo]

Yes, Shaws, I followed the testing protocol.I didn’t start Levo because I felt rubbish; I started it when I had several years of borderline TSH and FT4 below range.

I’ve felt the same on 50 mcg as 100 mcg - i.e felt nothing. But the first 5 days on 75mcg I felt great, definitely more energy....but it didn’t last.

[Bearo]

Thanks for your replies, I shall suggest a slight decrease in dose and see how I am on that.

[BB001]

As you are on levo only you can do the calculation to see how well you convert T4 to T3. The calculation is fT3 ÷ fT4. 6.5 ÷ 24.9 = 0.26.This makes you am intermediate converter according to Midgley et al 2015.

Midgley, J. E. M., Larisch, R., Dietrich, J. W., & Hoermann, R. (2015). Variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency. Endocrine Connections, 4(4), 196–205. LINK: ec.bioscientifica.com/view/...

See thyroidpatients.ca/2018/09/...

I would try s slight dose reduction to 87.5mcg. Just chop up a 25 mcg tablet into half, and take half one day half the next. Chopping a 100mcg tablet into eighths is more tricky, but levothyroxine has a long half life, so it will work if you take all the bits from the same tablet over 8 days.

[Carys21 in reply to BB001]

I had high results like this on Thyrovanz which has a small amount of T3, could I apply that calculation? For me it is 8 divided by 27.1 which gave me 0.295 - I've already reduced my dose after advised on here and my basal temperature has gone up to almost normal, so it seems I was overdosed.

[BB001 in reply to Carys21]

Any meds with T3 in distorts the calculation. If you have any results from when you were on levothyroxine you can use those as the will still be valid - your body's conversion rate doesn't change much. My conversion rate was always between 0.16 and 0.20 when I was on levo.

[Carys21 in reply to BB001]

That's good, I had results from 2017 when I wasn't taking anything and it worked out 4.3 divided by 15,5 = .277 which is good isn't it?

[BB001 in reply to Carys21]

Tania Sona Smith thyroidpatients.ca wrote:

'... poor converters (calculated deiodinase activity <23 nmol/s),

...intermediate converters (deiodinase activity 23–29 nmol/s) and

....good converters (deiodinase activity >29 nmol/s)'

This would put you in the intermediate converter group, I.e. middling. Not good, not bad. (Goodness knows what you would call me with a result of 0.16 - abysmal converter? I don't even have any Dio2 genetic mutations. I do have Dio1 genetic mutations.

[Carys21 in reply to BB001]

thanks for the clarification 😊

[tattybogle in reply to BB001]

please bear with me while i try to understand something you wrote

"The calculation is fT3 ÷ fT4. 6.5 ÷ 24.9 = 0.26. This makes you an intermediate converter according to Midgley et al 2015 .

Tania Sona Smith thyroidpatients.ca wrote :

'... poor converters (calculated deiodinase activity <23 nmol/s),

...intermediate converters (deiodinase activityand 23–29 nmol/s)

....good converters (deiodinase activity >29 nmol/s)'

This would put you in the intermediate converter group"

BUT... from here:-

thyroidpatients.ca/2021/05/...

the quote from Tania is:-

'In Midgley’s 2015 analysis of treated thyroid patients, the “GD” (global deiodinase efficiency) result was used by researchers to divide LT4-treated patients into three categories:

poor converters of T4 hormone to T3 hormone (<23 nmol/s),

intermediate converters (23–29 nmol/s)

good converters (>29 nmol/s).'

Tania describes fT3:fT4 ratio (FT3 divided by FT4 in pmol/L), and from her picture below fT3:fT4 ratio does not seem to relate exactly to GD......

I'm in the middle of writing a new post trying to understand how we calculate fT3:fT4 Ratios , so i don't want to get into it in depth on here , but was just wondering .. can you actually use the fT3:fT4 ratio result in the way you have here ?.. those categories relate to GD (global deiodinase efficiency ) results, which i think are a product of the SPINA -Thyr tool , and presumably they are not the same as a simple fT3:fT4 Ratio ?

.... and also the T3:4 ratios are in pmol/L and GD are in nmol/s ... what's the '/s' for ? i don't know , but how can we just put a simple ratio result of 0.26pmol/L into a category for 'GD' measurements done in nmol/s ?

Forgive me if i'm overcomplicating something obvious, or being a bit dense!... just trying to unravel my confusion on this issue.

Tania has added T3:T4 ratios to SPINA-Thyr data , and doesn't get the same result as GD.

[BB001 in reply to tattybogle]

I can see your confusion. If you join 'thyroid patients Canada support' Facebook group you could ask Tania directly. You don't have to live in Canada to join it.

[BB001 in reply to BB001]

This is useful, it's a conversion toolFor fT3:

unitslab.com/node/120

For fT4:

unitslab.com/node/121

[pennyannie in reply to BB001]

Thanks for those links :

I divide the T3 into the T4 to find the for accepted conversion ratio when on T4 - Levothyroxine only and I understand this ratio to be :- 1 / 3.50 - 4.50 - T3/T4 :

with most people preferring to come in at around 4 or under :

I think we end up up at the same place so 24.9 divided by 6.5 gives me 3.83 :

This shows good conversion, but with an over range T4 so dependant on symptoms being experienced, a dose reduction may help but follow up needed after 6-8 weeks as T3 may have dropped too low and may compound the problem.

[BB001 in reply to pennyannie]

You can do your calculation fT4 ÷ fT3 = 24.9÷6.5 = 3.83. One researcher uses it this way round (but I can't remember who) in which case the answer should be >4 if you're a poor converter.

Edited: I wrote good converter when I meant to write poor converter.

[tattybogle in reply to BB001]

Thanks. , another quick ? from reply to pennyannie..."You can do your calculation fT4 ÷ fT3 = 24.9÷6.5 = 3.83. One researcher uses it this way round (but I can't remember who) in which case the answer should be >4 if you're a good converter."

Did you mean to write > 4 or was it a typo and you meant < 4 ?

.......i've just done a coupe of comparisons using this method and a higher number equates to worse conversion than a lower number.

(T4) 17 '/, 2.5 (T3) = 6.8 .... worse

(T4) 17 '/, 5.5 (T3)= 3.09....better

[BB001 in reply to tattybogle]

Thank you. I meant to write >4 is a poor converter. I have edited my reply and put a note saying I've done so

[BB001 in reply to tattybogle]

I asked Google what the difference between pmol and nmol is:

1 nmol =1000 pmol

So in a calculation where one number is being divided by another number, providing both numbers are in the same units, it makes no difference to the answer. E.g 1÷2 = 0.5. 1000÷2000 = 0.5

[BB001 in reply to tattybogle]

What this result is saying is how many T4 molecules you need to create a T3 molecule (not sure if molecule is the right word). So if you need more than 4 ×T4 molecules to create 1× T3 molecule you are a worse converter than someone who's answer is 3 i.e. they only need 3 T4 molecules to create a T3 molecule. For example if a person has 24 T4 molecules, the poor converter would get 6 T3 molecules (24÷4), and the good converter would get 8 T3 (24÷3) molecules

It matters because it is T3 that governs symptoms see Paul Robinson's post

[tattybogle in reply to BB001]

Thanks for helping me out

[BB001 in reply to tattybogle]

Do look at professor Tania Sona smiths articles on thyroidpatients.ca. they're brilliant and all research based

[tattybogle in reply to BB001]

yes , i;m a fan x

[Bearo in reply to BB001]

Thank you, I was thinking of a small reduction- just have to get GP to agree!

[Gem5987 in reply to Bearo]

You could stay with same dose, but skip 1 pill per week. My doctor had me do that when my TSH was too low.

[Bearo in reply to Gem5987]

Oh, thanks, Gem, I was wondering if that would work.

[Gem5987 in reply to Bearo]

I also wanted to mention, if you had central hypothyroidism, you would have a low TSH, low T3, and low T4. Oddly enough, the symptoms of being under medicated and over medicated can sometimes feel similar. That has been my experience. Hope this helps!

[BB001 in reply to Gem5987]

You can have low/normal TSH with low ft4 and ft3 and still have central hypothyroidism.

[Gem5987 in reply to BB001]

That’s what I said. Low TSH, low T3 and low T4 = central hypothyroidism. She low low TSH with high T3, and high T4 which is more indicative of hyperthyroidism.

[BB001 in reply to Gem5987]

Low/NORMAL TSH!

Sorry for capitals but the normal bit is important.

I've just been searching for the NHS document I was thinking about, but can't find it. I did find this newspaper article that is interesting.

edp24.co.uk/news/health/t3-...

[BB001 in reply to BB001]

This is relevant23 YEARS OF MISDIAGNOSED CENTRAL HYPOTHYROIDISM WITH A NORMAL TSH: CASE STUDY

thyroidpatients.ca/2021/05/...

[Bearo in reply to Gem5987]

But I don’t feel over medicated in the slightest.

[Gem5987 in reply to Bearo]

There is a condition called thyroid hormone resistance, but it’s rare. Here is a link you might find interesting.

yourhormones.info/endocrine...

[Bearo in reply to Gem5987]

That’s really interesting (some of it could apply to me, but not everything )

[Bearo in reply to Gem5987]

Well, when I started Levo I had TSH 4.9 and FT4 two points below the range. My TSH plummeted fairly quickly on Levo and my frees have risen gradually to their current high. But something isn’t right cos I’m not feeling any different . I assume someone with Central Hypothyroidism would respond to Levo as that is the treatment?

[BB001 in reply to Bearo]

There are lots of things that need to be right to enable you to get the best out of Levothyroxine and to enable your body to convert levo (T4) to liothyronine (T3). B12, folate, vitamin D, selenium levels all need to be optimal. Take levo on an empty stomach at least 4 hours after food; away from iron, magnesium and calcium supplements; don't eat for an hour afterwards; avoid taking with caffeine; cortisol levels etc. Have a look at thyroiduk.org.uk thyroiduk.org/if-you-are-hy...

[Gem5987 in reply to Bearo]

If you had central hypothyroidism doctors would still prescribe Levothyroxine or some other form of thyroid hormone. However, they would ignore your TSH and go by what your free T3/T4 levels are. A TSH of 4.9 is slightly high according to many labs. That combined with the low T3 and T4 you said had before treatment would indicate primarily hypothyroidism. Treatment is the same regardless of whether it is central or primary. In the U.S., they only test TSH, so central hypothyroidism could easily be misdiagnosed.

[BB001 in reply to Gem5987]

This works for some people, but not for me. I am very sensitive to dose changes, even with levo, so I used to chop a 25mcg tablet onto quartets and decrease by a quarter every 3 days.

[Gingernut44]

To be honest, you can do your own reduction as advised here, you don’t necessarily have to involve your GP at this stage. Whether he agrees or not is immaterial as it’s your body. If you find that you feel better with a slight reduction, then you can tell your GP. If he reduces your prescription and it doesn’t work you might have a fight to get an increase back up. Just my thoughts 😊

[Bearo in reply to Gingernut44]

Yes, Gingernut, I would do that if I could, but I had my blood drawn at the GP surgery for both NHS and private test . (Maybe that was a mistake, but I was avoiding having to stab my finger myself!) So I’m pretty sure when I ask for the results from the surgery GP will want a dose reduction . If I didn’t ask for their result I’m not sure anyone would bother to look at it, but I want to request further tests so I’ll have to engage with them. That’s why I wanted to be decided about maintaining or agreeing to reduce my Levo before having the conversation.

Thanks for commenting.

[BB001 in reply to Bearo]

If you just ask the receptionist for a printout, the GP doesn't usually get involved (not at my GP's surgery anyway).

[BB001 in reply to Bearo]

Actually, if you decrease yourself then tell your GP you were feeling a bit hyper so you had a blood test taken to establish a baseline, then decreased your dose yourself to see if you felt better, it gives the GP confidence in your ability to self medicate. Well it did mine anyway. I always do this and I'm always right about whether I needed a dose increase or decrease. It's a bit harder now I've moved to T3 only (for a bit harder, read lots harder!)..

[BB001 in reply to Gingernut44]

I would try it and see if it works, then report back to your GP.

[Bearo in reply to BB001]

Thanks - not a bad idea, but whenever I ask for blood test results the receptionist says, “the doctor has to see them first”. There’s a conspiracy that the patient must not be forewarned about their results , because, you know, forewarned is..........

[BB001 in reply to Bearo]

I must have my receptionists well trained!

[Bearo]

I’m so grateful for everyone’s input. Every reply has been helpful, thank you all!

[Molioli in reply to Bearo]

Hi BraroI can see all my test results on my online GP practice page in fact I can see most of my medical history.

If you normally order your repeat prescriptions and make your appointments via online PatientAccess than you can also ask your surgery to expand your access to test results etc Check with surgery what kind of online account you can setup.

Wishing you well 🤗

[Bearo in reply to Molioli]

I’ve asked my surgery about access - in fact I put in writing that I want copies or online access to all previous blood tests (that’s only about 4 in total) , and I addressed a copy to the practice manager. As well as reception. That was in January. I’ve heard nothing. The surgery uses the NHS app but only for listing prescriptions, absolutely nothing else.Think I’ll have to move surgery.

[tattybogle in reply to Bearo]

Did you use the words 'Subject Access Request ' in you letters ?When you make an SAR they legally only have a certain amount of day's to respond (28 days i think ?)

I'm not sure if you have to use a specific form to make an SAR request , i did, i got it from reception , once they'd 'remembered' where they were.

DJR1 has lots of old posts and knowledge about Access issues.

[Bearo in reply to tattybogle]

Thanks, Tatty, I don’t think I did use the phrase, and I definitely didn’t use a special form, but I did ask the receptionist about it before writing. I’ll just have to try again following the required format.