Out of Sync - Hypo to Hyper. Need advise on res... - Thyroid UK

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Out of Sync - Hypo to Hyper. Need advise on results/vitamins please.

Mikico profile image
23 Replies

Hello all,

Brief intro - am ‘induced’ hypo (2 radioactive iodine tests) to break down nodules. Been on thyroxine for 20+ years (fluctuate between 75mcg/100mcg daily) - currently Levo.

Moved to Spain a few years ago but been complacent with tests (self medicating at 100mcg). Have been feeling a bit ‘edgy/anxious’ about silly things and not sleeping well so recently tested.

Two results - 100mcg then reduced to 75mcg.

Oct 2021 results: @100mcg/daily

TSH: 0.0083 (0.3 - 4.2)

T4: 7.5 (5.5 -11)

T3: 0.8 (0.7-2)

Ferritine Low: 10 (11 - 307)

Dec 2021 results: @75mcg/daily

TSH: 0.34 (0.3 - 4.2)

T4L: 0.88 (0.7 - 1.48)

T3L 2.40 (2.1 - 4.4)

New doc would like to reduce to 50mcg daily but am hesitant as have never been that Low on Levo.

Any advise would be highly appreciated - thanks!

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Mikico
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23 Replies
SlowDragon profile image
SlowDragonAdministrator

First thing to understand is that we need both Ft4 and Ft3 at good levels

Ft4 is levothyroxine and needs to be converted in cells and gut into Ft3

For good conversion we need GOOD Vitamin Levels

Low Ft3 leads to low vitamin levels….low vitamin levels leads to poor conversion and even lower Ft3

After RAI …..after menopause….with Hashimoto’s….all often result in poor conversion of Ft4 to Ft3

Your results show absolutely DIRE ferritin levels

You need to test vitamin D, folate and B12 too

Ft3 is extremely low

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Are you vegetarian or vegan

What vitamin supplements are you currently taking

SlowDragon profile image
SlowDragonAdministrator

Oct 2021 results: @100mcg/daily

TSH: 0.0083 (0.3 - 4.2)

T4: 7.5 (5.5 -11)

T3: 0.8 (0.7-2)

Ferritine Low: 10 (11 - 307)

Dec 2021 results: @75mcg/daily

TSH: 0.34 (0.3 - 4.2)

T4L: 0.88 (0.7 - 1.48)

T3L 2.40 (2.1 - 4.4)

Most people when adequately treated will have Ft4 and Ft3 at least 50-60% through range

October results

Ft4 36% through range

Ft3 only 7% through range

Assuming testing as recommended

Suggests under medicated and very poor conversion

December results

Ft4 is 23% through range

Ft3 is 13% through range

So conversion improved slightly, as TSH increased ….as now even more under medicated

How much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day

Essential to maintain OPTIMAL vitamin levels

GP should be doing full iron panel test for anaemia

You will need iron supplements

Meanwhile working on improving low iron/ferritin by increasing iron rich foods in diet as well

Mikico profile image
Mikico in reply toSlowDragon

Hi - thank you for your reply. I just realised how ‘blur’ I am with my thyroid and haven’t been taking my results seriously in the past few years.

I am not a vegetarian but eat mainly white meat. Also, am 1m70 for 57kg.

I will definitely up my iron levels and check for anaemia. Have definitely not been feeling myself lately.

SlowDragon profile image
SlowDragonAdministrator in reply toMikico

Come back with new post once you get folate, B12 and vitamin D results

These are likely low too because your Ft3 is so low

Don’t assume vitamin D is good because you live in Spain

Common for conversion of Ft4 to Ft3 often gets worse as we get older

You may need addition of T3 eventually….but first step is to get all four vitamins OPTIMAL

Are you taking levothyroxine everyday without fail

Recommend getting weekly pill dispenser for levothyroxine

Taking levothyroxine at bedtime can be more convenient and possibly more effective

Mikico profile image
Mikico in reply toSlowDragon

Yes - am taking 75mcg/ daily but it’s true that am not so consistent at times. Great idea - will also get a weekly pill dispenser.

Have been doing some research on Armour Thyroid as I think the addition of T3 would help me. However, not sure if I can get it in Spain. Will be asking my Endocrynologist.

Have also just ordered all the supplements 👍

Mikico profile image
Mikico in reply toSlowDragon

Hello SlowDragon - have been re-reading your response intricately to let it all go in.

It is all starting to make sense to me - especially the T4 to T3 conversion. Am currently working on increasing my ferritin but unfortunately my other iron levels are in good/high range - so have just ordered Ferritin specific iron supplements in order to avoid ‘over’ medicating my iron levels.

However, you indicated that in my December results - am even more under medicated. What do you mean by that? Am only concerned that by increasing it to 100mcg/daily again, that my TSH will drop drastically. Do you think I should look into adding T3? Am currently looking for a new Endo but really appreciate/trust this forum more than any endo at the moment.

Thanks again!

SlowDragon profile image
SlowDragonAdministrator in reply toMikico

Ideally you need to get all four vitamins optimal

Increase levothyroxine dose so that Ft4 is at least 50-60% through range ….always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

TSH is frequently low when adequately treated…..as long as Ft3 is not over range, and you feel well, you’re not over medicated

You will see many members have TSH below range when adequately treated

At moment you’re vitamin levels are too poor and Ft4 is too low ….to consider adding T3 yet

Taking almost any dose of T3 or NDT will suppress TSH….typically 0.01-0.03

Mikico profile image
Mikico in reply toSlowDragon

Ok great - Ferritin levels are also increasing slowly from :

10 (11 - 307) Oct'21

34 (11-307). Jan '22

Will try to reach optimal range before adding any T3.

Picked up latest blood test results today - annoyingly no T3 included (will redo test).

11.01.22 Results:

TSH 0.92 (0.3 - 4.2)

T4L 0.86 (0.7 - 1.48)

Agree with you - need to revert to Levo 100 mcg/daily as TSH increasing but T4 slightly reduced.

Thanks again!

SlowDragon profile image
SlowDragonAdministrator in reply toMikico

Looking at getting ferritin at least over 70

Come back with new post once you get vitamin D, folate and B12 results

Quite likely these need improvement too

pennyannie profile image
pennyannie

Hello Mikico and welcome to the forum :

Just for reference since you have had RAI thyroid ablation :

RAI induced primary hypothyroidism is more difficult to treat :

RAI is known to trash vitamins and minerals :

RAI is a slow burn, and it takes it's time, burning out your thyroid function in situ :

RAI is known to be taken up, to a lesser degree, by other glands and organs within the body :

If you want to know more I'd suggest you dip into the Elaine Moore Graves Disease Foundation website as Elaine went through RAI thyroid ablation and finding no help with her continued ill health started researching everything thyroid related and now has several published books and a world following through her website which is Stateside.

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body :

Conversion of T4 into T3 can be compromised by low vitamins and minerals especially those of ferritin, folate, B12 and vitamin D - and read in most papers that ferritin needs to be at least over 70 for T4 thyroid hormone replacement to work.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2. and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T3 is said to be around 4 times more powerful than T4 and the active hormone that runs the body with the average person needing to find and convert around 50 T3 daily just to function.

Some people can get by on T4 only :

Some people find they need to add a little T3 to their T4 and make a T3/T4 combo at some point in time :

Some people can't tolerate T4 and take T3 - Liothyronine - only :

Some people feel at their best on Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and made from pig thyroid, dried and ground down into tablets and referred to as grains.

Whatever thyroid hormone replacement you choose to take you do need to work on getting your core strength strong and solid as no thyroid hormone replacement works well until your ferritin, folate, B12 and vitamin D are all maintained at optimal levels.

Mikico profile image
Mikico in reply topennyannie

Hi - thanks for your feedback. It is very in depth and I will definitely look into the Elaine Moore books. Am so happy to have found such a helpful forum with great insight!! 👍

pennyannie profile image
pennyannie in reply toMikico

Ok then - personally I found her book - the first one - Graves Disease - A Practical Guide - too medical to comprehend but then, she wasn't writing for joe public as she is by trade a medical technologist in the States.

Her website which evolved later is much easier to comprehend and you'll just need to be selective on what you read - as you haven't Graves - but you have had RAI and you have now, likely no thyroid production of your own.

Thyroid UK - the charity who support this forum has a list of reading materials you might like to consider :

My goto book now is Your Thyroid and How To Keep It Healthy written by a doctor who has hypothyroidism Barry Durrant-Peatfield.

The title of his book may sound counterintuitive as we haven't our thyroids but we do need to know all that this tiny but oh so important major gland is meant to do so we can try and compensate accordingly.

Research into the long term consequences of RAI is hard to find but this was published as few years ago in the Thyroid UK newsletter :

ncbi.nlm.nih.gov/pubmed/306...

Mikico profile image
Mikico in reply topennyannie

Thanks 🙏

Would you be able to recommend any NDT Brand’s? Am keen to try it out as believe am a poor converter. However, when I Google Armour Thyroid or other NDT Brand’s - I keep finding that they are discontinued.

Batty1 profile image
Batty1

Is your ferritin still 10? This can cause issues.

Mikico profile image
Mikico

Hi - I have been taking some iron supplements since Nov so I hope it’s not as Low but haven’t had another blood test to check.

Have just ordered the supplements recommended : (B12, D3, Ferritin & Folate)

Will then have another test - fingers crossed 🤞

tattybogle profile image
tattybogle

Dec 2021 results: @75mcg/daily

TSH: 0.34 (0.3 - 4.2)

T4L: 0.88 (0.7 - 1.48)

T3L 2.40 (2.1 - 4.4)

New doc would like to reduce to 50mcg daily

Why does he want to reduce it further ?

The TSH is now back in range... and the T4 and T3 are now pretty low .

Reducing to 50mcg when T4 and T3 are already this low seems foolish.

Mikico profile image
Mikico in reply totattybogle

Not sure - apparently he wants my TSH level to be around 2.8/2.9 (range 0.3 -4.2). However, I have been sceptical and therefore have not reduced my thyroxine yet. Am going to try get my vitamin levels to optimal range first. Then retest T3 and T4 👍

tattybogle profile image
tattybogle in reply toMikico

Seriously ...... ask him if he knows what his own TSH level is before he starts suggesting you put up with yours at nearly 3. See thing graph :

healthunlocked.com/thyroidu...

It clearly shows that the most common level for healthy people is closer to 1 .

most of those would feel very unwell if their TSH was anywhere near 3 .

tattybogle profile image
tattybogle in reply totattybogle

Then get him to read these .. he might change his mind about TSh 2.9 being such a good idea:

References for keeping TSH lower in ALL patients:

This one ..... from page 13 in the liothyronine (T3) guidance... sps.nhs.uk/wp-content/uploa...

" NHS consultant endocrinologists may start a trial of combination levothyroxine and liothyronine in circumstances where all other treatment options have been exhausted.

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine.

(TSH 0.4-1.5mU/L)

2. Where alternative causes of symptoms have been excluded, see box 1 below"

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This one ..... from PULSE magazine for GP's... The article is available from ThyroidUK

If you want a copy of the article then email tukadmin@thyroidUK.org

and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.

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)."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

plus This one ........ found in GPonline.com 15th April 2010.

gponline.com/endocrinology-...

"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by "Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".

* NOTE this one also clearly states that raised cholesterol is caused by hypothyroidism *

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Oh and This one .... gp-update.co.uk/files/docs/...

"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).

If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

and another one .....

ncbi.nlm.nih.gov/labs/pmc/a...

"Given the complexity of pathways that govern TH action at tissue and cellular levels, it is not surprising that some patients receiving exogenous thyroid hormone replacement therapy report on-going symptoms despite optimal thyroid function tests (e.g. normal T4 and T3 with TSH <2 mU/L in primary hypothyroidism).

Mikico profile image
Mikico in reply totattybogle

Am so glad I didn’t reduce my thyroxine to 50mcg!!! Thank you for the articles/excerpts - much appreciated.

tattybogle profile image
tattybogle in reply toMikico

you're welcome :)

SlowDragon profile image
SlowDragonAdministrator in reply toMikico

If this GP wants TSH over 2 you need a new GP

Median TSH graph shows majority of healthy population have TSH between 1-1.5

healthunlocked.com/thyroidu...

TSH daily variation …highest in morning

healthunlocked.com/thyroidu...

So it’s important when you test TSH ....

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

You’re terrible vitamin levels directly linked to being on too low a dose levothyroxine …..and/or poor conversion of Ft4 to Ft3

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo of your weight per day

57 kilo x 1.6 = 91mcg per day = 637mcg per week

4 days x 100mcg plus 3 days x 75mcg = 625mcg

Currently only taking only 525mcg per week

Mikico profile image
Mikico in reply toSlowDragon

I agree - think I’ll be looking for a new Endocrynologist. Really appreciate the info - thanks 👍

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