conversion levo

[fiftyone]

My TSH is totally suppressed, my T4 level is always several points above the top of the range, but my T3 is normal (I have a tendency to put on weight). if I reduce levo dose just a tiny bit, I feel unwell within a few days. What is happening? Is there some kind of conversion problem?

[SlowDragon Administrator]

Do you have the actual results to add?

Many people need high Ft4 in order to get high enough Ft3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

Important to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking?

[fiftyone in reply to SlowDragon]

Yes, I am aware of this information. But would I be better taking a T3 supplement and less Levo? I have occasional atrial fibrillation (couple of hours a week eg) and doctor thinks my high T4 figure may be contributing to the problem. Am waiting for an endo appointment to discuss this.

[SlowDragon Administrator in reply to fiftyone]

Yes possibly

Essential to get vitamins optimal FIRST

[SlowDragon Administrator in reply to fiftyone]

Do you have Hashimoto’s?

Conversion is often poor with Hashimoto’s

Are you on strictly gluten free diet or tried it?

[fiftyone in reply to SlowDragon]

no one's ever mentioned Hashimotos. Just been diagnosed as under active thyroid. I keep well away from wheat produces (bread, pasta, pastry, biscuits etc.) because of carbs (I'm type 2 diabetic). How do I know if I have Hashimotos??? Have had under active thyroid for 35 years

[SlowDragon Administrator in reply to fiftyone]

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is very often an issue to.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

(If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Gluten free diet does need to be absolutely strictly gluten free to be effective

As explained here

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

[tattybogle]

Hello fiftyone,

Having just read your old posts, i notice that if you live on a high enough hill ,i could probably wave at you from where i live.

I also notice you have been having the same trouble as me, (over range FT4 and suppressed TSH but in range FT3 ) since the FT4 range round here changed from [8-18] to [7.9-14] in 2017 .

I have had the same trouble with Gp's insisting my dose needs reducing even though nothing else has changed and i had been stable on that dose for years previously.

I have also had the same problems with becoming ill when i have reduced dose to please them , and they have reluctantly agreed to put it back up a bit (although on my own head be it ,if i die! ).

Fortunately i have not had the same problem with AF ( yet? ), but over the last 3 weeks i have had dry sore eyes for the first time ever and had to buy eye drops.

I also want to know if a bit less T4 , and a bit more T3 would make me better.

I too, am concerned that i've got no chance of getting any from the nhs, because of my high T4/low TSH, but don't want to be made ill again to get them in range.

Sadly what i don't have is a fix for our problem, but it's reassuring to find i'm not going mad on my own.

Maybe its something in the water ? Or maybe ,as i too, have been wondering , there is something suspect about that latest narrowing of the FT4 range they are using round here!!

My only advice, at the moment, comes from Norman Stanley Fletcher........ Don't Let The Ba**ard's Grind You Down!.

All the Best

Tat.

[fiftyone in reply to tattybogle]

Hi. yes i think we are twins regarding thyroxine levels I had to walk out on a GP cos he insisted I reduce my levo dose. he sat looking at the figures ont he computer instead of examining me and seeing I had absolutely no signs of overdosing. Like you I am v ery suspect of the range now introduced in this area. At one time my T4 level, around 24 was top of the range. Now its way up high but I feel just the same. Something very odd going on. Surely its how we feel that matters, not some boffin in an office fiddling the figures, based on what???

There is a thought that high T4 can contribute to heart problems which is why I wish to consult an endo. Still waiting for an appointment, nothing in sight. PS. I might be able to climb the hillside behind my house to wave!

[tattybogle in reply to fiftyone]

I used to be ......................119% through old range on 150mcg ,

now ,allegedly , i'm....... 206% through the new one on 112mcg ,

With no significant change in TSH or FT3, or weight , or diet, or age ,or health conditions,or Gp,......... only difference is that now ....i'm unable to work , or drive much, or look after my garden............

But when i was on 150mcg i could drive a 3..5 tonne truck towing a 2 tonne trailer and put up a mobile stage, and grow my own veg, as long as i had a nap in the afternoon .

The only thing that changed was Reduced dose of Levo, 'Cos "we worry about your heart" (without ever taking my pule or anything !) followed by "you'll die"...........

..................I haven't died yet and i don't believe them anymore....................

I'll go stand on the beach in front of mine and see if i can see you !

[fiftyone in reply to tattybogle]

after tests,my GP said my cholesterol was satisfactory. I felt obliged to explain to him it was because I was adequately medicated with thyroxine. I was told that high thyroxine (i take 175mcg a day for past 15 years) would weaken my bones. So far, never broken a bone in my body even though I've slipped and fallen. I sometimes think there is a standard response for everyone. So much quicker and easier to have one standard response rather than treat people as individuals with individual needs.

[tattybogle in reply to fiftyone]

I can't wait for my Gp to try that one about 'weakening my bones' on me, when he's put me on the sofa for nearly 3 yrs. I'll have some choice words for him about what that's probably done to my bones!

[fiftyone in reply to tattybogle]

hahaha

[tattybogle in reply to fiftyone]

Going for my social distancing exercise on the beach now, where we all shout at each other from a distance nowadays ! nice talking to you fiftyone,

Tat

[pennyannie in reply to fiftyone]

Hello there Fiftyone

I do believe you need to go back on the dose that kept you well.

It seems to me doctors are effectively repeating dogma from a computer screen and have little thought of the person sitting across from them.

They have become followers of rules and guidelines with no independent thought, knowledge or common sense.

You were well on the higher dose of Levothyroxine, your body was happy, and you appear to have been symptom free.

Conversion can be compromised if your ferritin, folate, B12 and vitamin D aren't maintained at optimal levels, and just thinking that possibly these have dropped as your medication was decreased and your metabolism reduced.

Just another thought, these, oh so not. fit for purpose guidelines, that appear not to be a guide but taken as law, do suggest, I think I read , that at age 65 dosage of Levothyroxine should be reviewed to consider lowering the dose - you might wonder why - I couldn't possible say ??????

[pennyannie in reply to tattybogle]

Please make sure whatever lotions, potions or drops you buy for your eyes, that they are "preservative free " :

[tattybogle]

I found an old post that may have interesting heart info, by Jnetti -Irregular heartbeat? -a year ago . Sorry i have no idea how to link to it as i'm a Luddite.

[RedApple Administrator in reply to tattybogle]

tattybogle I think this is the post you're referring to healthunlocked.com/thyroidu...

[tattybogle in reply to RedApple]

Thanks, where do i find how to do that ? are there instructions for reformed Luddites anywhere?

[RedApple Administrator in reply to tattybogle]

Depends on what device you're using... laptop, phone, iPad etc?

[tattybogle in reply to RedApple]

laptop

[RedApple Administrator in reply to tattybogle]

Ok, so at the top of your browser window, should be an 'address bar'. That is what you would copy and paste to give someone else a link to the page you're currently viewing.

Tell me which browser you're using if you need instructions on how to copy and paste.

[RedApple Administrator in reply to RedApple]

Or have I lost you already?

[tattybogle in reply to RedApple]

Got it . Thank you very much RedApple , i can use a passing child to show me how to copy and paste later !

Apologies to fiftyone for cluttering up your post , stopped now

Tat

[pennyannie in reply to tattybogle]

Can you send the child my way please, after you have your lesson on cut and paste !!

[tattybogle]

Hi Fifty one .check this out , i asked diogenes opinion on our 7.9-14 range .regards, Tat

.Reference Ranges: Dear people Why are reference... - Thyroid UK

Hope that attempt to copy and paste worked, if not look in my profile [click on my name above ] at 'replies' and click on the one to Reference Ranges,