Hashimotos & FT3. Advice needed - Rock bottom -... - Thyroid UK

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Hashimotos & FT3. Advice needed - Rock bottom - About to try Thybon (poor FT4- FT3 conversion).

LukeFitz profile image
16 Replies

Hi Everyone,

I have been supported a lot by this community already. Thank you.

I am a 39 year old male, living in Ireland. I was diagnosed with Hashimotos in 2019. I started Eltroxin at that time. I started on 25mg, and increased to 50mg at the start of 2023. I generally eat well, and exercise when I can. I also meditate and practice mindfulness (work in progress). Although my lifestyle choices have been good, LDL cholesterol is very high.

Up until this year, I would say that my energy levels have been pretty good (other than times of high stress, which I think flares the Hashimotos significantly).

All of a sudden, in January of this year, I was plunged into the worst anxiety, low energy, experience of my life. It lasted a month before subsiding a little. I went off gluten and dairy, and cleaned up the diet even more. Then again in March another horrible episode, again seemingly out of nowhere. And now again in June and July.......this last bout has been much worse than before. I can only move from the bed to the couch, where I spend most of the day. It feels like I am losing my mind. And I can't be sure of what is causing these symptoms.

I have gone to see a functional medicine GP, as my family GP can only offer anti-depressants and did not want to test for FT3. I have completed some tests with a private company, results below.

TSH: 2.07

FT4: 19.2

FT3: 3.53

TPO: 88

TG: 120

Vitamins

B12: 293 (range 206 - 1000)

Ferritin: 69 (23 - 393)

Folate: 17.7 (4.5 - 20)

Vitamin D: 75 (<50)

In addition to those results I did a 4 point saliva cortisol test that showed Phase 1 HPA axis dysfunction (cortisol on high alarm throughout the day).

The functional medicine practitioner is prescribing Thybon in addition to the 50mg of Eltroxin I am taking. We are also going to try some supplements for better cortisol regulation.

It feels to me like a vicious cycle. The FT3 is low, which causes symptoms of anxiety, tiredness, and depression........I stress myself out worrying about what the hell is happening to me.......my adrenals get fried.......and the thyroid functions even worse as a result. I am filled with fear, and I don't feel like I can do anything.

My questions:

Based on the above, does it seem like FT3 of 3.5 could be responsible for the symptoms I am experiencing?

Based on the above, is my ft4 to ft3 conversion very low?

I am scared to introduce another drug that I will take for the rest of my days. Based on the above, is introducing Thybon my best option for trying to feel better?

Feel free to share any other observations that you might have.

Thank you very much for your support!

Luke

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greygoose profile image
greygoose

Based on the above, does it seem like FT3 of 3.5 could be responsible for the symptoms I am experiencing?

Well, you haven't given the ranges, but that does look very low. And if it is very low, then it absolutely is responsible for at least some of your symptoms. T3 is the active thyroid hormone, needed by every single one of the cells in your body and brain to function correctly. So, if there's not enough to go round, symptoms can occur anywhere and everywhere.

Based on the above, is my ft4 to ft3 conversion very low?

As far as one can tell without the ranges, yes, it is.

I am scared to introduce another drug that I will take for the rest of my days. Based on the above, is introducing Thybon my best option for trying to feel better?

T4 and T3 are not drugs. They are thyroid hormones. And introducing one or the other does not mean you have to take it for life. If T3 doesn't suit you, you just stop it. If you feel you would be better off on T3 mono-therapy, just stop the T4. But, you absolutely do need some form of thyroid hormone replacement to stay alive. And if your thyroid can no-longer supply you with adequate amounts you have to take exogenous hormone. For life.

So, as thing stand, given what you're said, it does sound as if taking T3 is your best option for good health and feeling well.

That said, it would be a good idea to optimise your nutrients before starting T3 - it will work better for you if you do. Your B12 is dangerously low. Should be at least over 550. And your vit D and ferritin would be better around 100. So, if nobody comes along to advise you on how to do that, start another question asking about nutrients. :)

LukeFitz profile image
LukeFitz in reply togreygoose

Thank you very much for taking the time to reply. I really appreciate it.

Apologies for not sharing the ranges. I will attach a photo that shows them.

I think the FT3 range was 3.1 to 6.8. Actual result was 3.5.

I will look into the vitamin results as you have helpfully suggested.

Thank you again.

Results with ranges.
greygoose profile image
greygoose in reply toLukeFitz

OK, so yes, your FT3 is very low, and you are a poor converter. You do need to take the Thybon to get well. :)

humanbean profile image
humanbean

I am a 39 year old male

I was diagnosed with Hashimotos in 2019. I started Eltroxin at that time. I started on 25mg, and increased to 50mg at the start of 2023.

You were left to rot on an extremely low dose of Levo for 3 years?

At 39 you should be in the prime of life and would almost certainly have coped with a dose of 50mcg to start with. In the UK a starting dose of 50mcg per day is common for adults under 60 and with no heart problems. After 6 - 8 weeks you should have been re-tested and your Levo dose adjusted. Common doses in the UK are 100mcg - 200mcg per day, although less or more is not hugely uncommon.

Also, a TSH of over 2 is a sign that you are under-treated. Healthy people with healthy thyroids, on average, have a TSH of about 1 - 1.5. People with hypothyroidism usually need a TSH below that of healthy people. (TSH reduces the higher your dose.)

Thyroid hormones, particularly Levo, don't add to what your thyroid produces they replace what your thyroid produces. So if your thyroid was producing 40mcg of thyroxine before treatment (which is low) then giving you 25 mcg of Levo as a treatment could, after a couple of weeks, have reduced your overall thyroxine level and made you feel worse than ever.

Can people in Ireland buy private testing without involving doctors? It might be worth investigating. Many of us from the UK on this forum use private testing and it can be very helpful.

thyroiduk.org/testing/priva...

...

B12: 293 (range 206 - 1000)

Ferritin: 69 (23 - 393)

Folate: 17.7 (4.5 - 20)

Vitamin D: 75 (<50)

...

Your vitamin B12 is appalling - far too low for good health. Please read these two links :

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/fo...

It might be worth asking your doctor if you can be tested for pernicious anaemia (PA) before you start supplementing. For more advice on that you should join the Pernicious Anaemia Society forum on this site and either read older posts or post your results in a new post.

healthunlocked.com/pasoc

People with PA can't absorb B12 in the gut and so they need injections. It should be noted that testing for PA is not very reliable and supplementing before testing must be avoided.

.

If you choose to go ahead and supplement anyway, then the best supplement for most of us is methylcobalamin. A few people do prefer cyanocobalamin.

...

Your folate level is fine. Optimal is a result in the upper half of the reference range, which yours already is. If you ever have to supplement it because your level drops too low, the best supplement for many of us is methylfolate. Avoid folic acid.

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

...

Your ferritin level is too low. It's only 12% through the range. You should get an iron panel done and post the results asking for feedback before even considering supplementing. The iron panels offered by many companies often have too few things included in the test. This is a good one for comparison :

medichecks.com/products/iro...

Worth reading - optimal results for an iron panel - but do ask for help on this - it can be complicated :

rt3-adrenals.org/Iron_test_...

...

Vitamin D - your level is not bad. There are some disagreements on the level which is optimal. People have quoted 70 nmol/L, or 100 - 150 nmol/L, or 125 nmol/L. Take your pick and decide which level makes you feel at your best.

LukeFitz profile image
LukeFitz in reply tohumanbean

Thank you very much.

It hasn't been ideal, but I'm hopeful that I'm getting back on track. Like a lot of folks on here, I've had to try to figure it out as I go. This forum has been my main resource to be honest.

I'm hopeful that if I get the right medication, and sort out the vitamins, that things will stabilise for me.

There aren't a lot of private blood test providers here. Randox provide some services, so I'll see what I can do with them.

I'll do a test for PA, and an iron panel, and repost the results here.

Thank you very much again

SlowDragon profile image
SlowDragonAdministrator

TSH: 2.07

Free T4 (fT4) 19.2 pmol/L (12 - 22) 72.0%

Free T3 (fT3) 3.53 pmol/L (3.1 - 6.8) 11.6%

Was test done early morning, ideally before 9am, only drinking water between waking and test and last dose Levo 24 hours before test

50mcg levothyroxine is only the standard STARTER dose

Worth trying just an increase in Levo to 75mcg as first step

Approx how much do you weigh in kilo

also ESSENTIAL to improve low vitamin levels

what vitamin supplements are you currently taking

B12: 293 (range 206 - 1000)

B12 extremely low

Are you vegetarian or vegan

have you been tested for Pernicious Anaemia, if not ideally get GP to run tests BEFORE starting B12 supplement

LukeFitz profile image
LukeFitz in reply toSlowDragon

Yes, I followed the process you describe here when having the bloods drawn.

I had been following a vegetarian diet as my ldl cholesterol was really high (GP was more focused on that then the thyroid).

I understand that gluten and dairy should also be avoided for those with hashimotos. I have not yet completed a coeliac test, but will do that too.

I'm 74 kilos.

I have never tested for PA, but will do so.

I have started taking a multivitamin called opti-men......seems to have a good coverage. I also take magnesium.

So with regard to increasing the levo - I am told that because I am a poor converter, that increasing T4 could actually have a negative effect on T3 at this point. That is why Thybon is being suggested.

Thank you very much for your help.

SlowDragon profile image
SlowDragonAdministrator in reply toLukeFitz

High cholesterol is linked to low FT3 ….and largely unaffected by diet

Vegetarian diet likely to lower B12 and iron levels

As demonstrated by your results

B12: 293 (range 206 - 1000)

Ferritin: 69 (23 - 393)

Multivitamins never recommended on here

At best too little to improve low levels

But most (including this one you have) contain iodine not recommended for anyone with Hashimoto’s and on levothyroxine

instead look at taking a separate B12 daily

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

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

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

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

SlowDragon profile image
SlowDragonAdministrator in reply toLukeFitz

I have never tested for PA, but will do so.

if been vegetarian, this is most likely cause of your low B12 levels

SlowDragon profile image
SlowDragonAdministrator

Levo doesn’t “top up” failing thyroid, it replaces it

Essential to be on high enough dose

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

LukeFitz profile image
LukeFitz in reply toSlowDragon

Hi again SlowDragon,

Could you support me in understanding next steps following the below test results? Or should I make a new post altogether?

I am three weeks into starting on thybon henning t3 treatment, and a supplement called seriphos for phase 1 HPA dysregulation.

I was feeling awful. I have felt a little bit better each week for the last three weeks.

I had some additional blood tests completed to get a better picture of where my bloods are at.

Coeliac test = negative.

Pernicious anemia = negative.

Vitamin B12: 357 (range 206-1000)

Serum ferratin: 49.6 (range 23-393)

Folate Immunoassay: 20.3 (range 4.5-20)

Would I be correct in saying that the folate is high because I am deficient in B12?

I will start taking a B12 supplement (methylcobalamin), to increase B12 levels.

Iron studies -

Iron: 13 (range 14-31)

UIBC: 42 (range 20-66)

TIBC: 55 (range 50-80)

Transferrin sat: 24% (range 30-40%)

All results seem to be quite low.....

I am not sure what to do with the iron study results......any advice would be most welcome.

Thank you,

Luke

SlowDragon profile image
SlowDragonAdministrator in reply toLukeFitz

TSH: 2.07

FT4: 19.2

FT3: 3.53

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

is this how you did your test.?

Do you always get same brand Levo at each prescription

50mcg is extremely low dose levothyroxine

obviously been left far too long on only standard STARTER Dose

Ideally you would have increased Levo dose to 75mcg before considering adding T3

Vitamin levels

What vitamin supplements are you currently taking

Iron and ferritin are very low, but you have been vegetarian for recent months

Get back on iron rich diet

Red meat daily, liver once a week etc etc

Improve B12 by starting on daily B12, then a week later add daily vitamin B complex

Retest thyroid and vitamin levels in another 8 weeks

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until Serum B12 over 500 or Active B12 over 100

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

vitamin D, aim for at least over 80nmol. Between 100-125nmol may be better

SlowDragon profile image
SlowDragonAdministrator in reply toLukeFitz

How much T3 are you taking

How are you splitting the dose

Retest after 6-8 weeks on constant dose

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

LukeFitz profile image
LukeFitz

I am so grateful for all the support and advice.

I have an appointment next week to get bloods drawn to check iron, pernicious anemia, and a few other things. I will post results back here once I have them, end of next week. After that I can begin to supplement where necessary. I have ordered some of the suggested supplements already, such as B12. I won't start taking them until after bloods are drawn.

In the meantime I am slowly introducing thybon t3 in very small increments. A functional medicine GP has shared a titration protocol for that.

I am also starting a supplement called Seriphos to attempt to repair knackered adrenals.

That is all in addition to a number of lifestyle changes. Hoping to get my life back soon. Thank you again.

LukeFitz profile image
LukeFitz

Hi again,

Could you support me in understanding next steps following the below test results?

I am three weeks into starting on thybon henning t3 treatment, and a supplement called seriphos for phase 1 HPA dysregulation.

I was feeling awful. I have felt a little bit better each week for the last three weeks.

I had some additional blood tests completed to get a better picture of where my bloods are at.

Coeliac test = negative.

Pernicious anemia = negative.

Vitamin B12: 357 (range 206-1000)

Serum ferratin: 49.6 (range 23-393)

Folate Immunoassay: 20.3 (range 4.5-20)

Would I be correct in saying that the folate is high because I am deficient in B12?

I will start taking a B12 supplement (methylcobalamin), to increase B12 levels.

Iron studies -

Iron: 13 (range 14-31)

UIBC: 42 (range 20-66)

TIBC: 55 (range 50-80)

Transferrin sat: 24% (range 30-40%)

All results seem to be quite low.....

I am not sure what to do with the iron study results......any advice would be most welcome.

Thank you,

Luke

tattybogle profile image
tattybogle in reply toLukeFitz

Hi luke ,it's probably a better idea to write a new post asking about the latest iron results.

you reply on here was to yourself, so no one who previously replied has had an 'alert' to it, and new posts get more attention from the few folk on here who can do iron interpretation. (i'm not one of em , lol)

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