Help from your wonderful knowledge base please

[posthinking01]

Hi there wonderful members who know more about thyroid problems than the medical profession. I have just had a telecon appointment with a very eminent endo who I have been 'under' for many years and whilst he might be a whizz on diabetes we know more about thyroid than he does.

I take 70 mcg of T4 liquid and 5 + 5 of T3 a day and I am on steroids due to adrenal insufficiency.

28-Mar-2022 Plasma prolactin level -Normal - no action 379 mIU/L

102.00 - 496.00mIU/L

28-Mar-2022 Serum free T4 level - Normal - no action 12.7 pmol/L

11.20 - 20.20pmol/L

28-Mar-2022 ! Serum free T3 level - No action 7.2 pmol/L

3.20 - 6.80pmol/L

28-Mar-2022

CORTISOL - Normal - no action

55 nmol/L

Cortisol reference range:

6 - 10 am: 133 - 537 nmol/L

Results within the reference range do not rule out

cortisol deficiency or excess. Consider further

investigation if cortisol deficiency or excess

suspected.

My cortisol looks low but because I am on steroids he says that is fine and I tend to agree as I am showing more signs of over stimulation at times - although not letting 'off the hook' just yet that the abdominal swelling is low thyroid as I experienced that lovely symptom once before when undiagnosed and had to wear maternity clothing.

Problem I have is that I have a huge abdomen which he is saying I am on too much steroid but I can't get the dosage down (I have tried on numerous occasions) because of serious issues it gives me in other direction i.e. can't walk as so stiff and pain in joints etc. - trouble is, this is something I experienced when I was low on thyroid hormone too - the painful joints etc. went as soon as I went on T4.

So I have a two pronged problem - are my problems low thyroid - or low adrenal issue or both.

When you listen to Anthony Toft in this link - the part where he discusses the amount of thyroid hormone used years ago - i.e. much higher than today.

youtube.com/watch?v=HYhYAVy...(Not working as expected?) (early on in this video is the part that mentions the high doses of T4 that were given via NDT years ago)

So my question to you knowledgable thyroiders is this - I have no thyroid now it is atrophied - if the doses of T4 thyroid hormone were 200 mcg all those years ago - would I be able to build up to that level from 70 mcg - can anyone who has no thyroid tell me what dose they take - but would I convert the 200 mcg to any T3 or do I lose that process due to the atrophy? Any help would be greatly appreciated.

Thanks

A

[SlowDragon Administrator]

I take 70 mcg of T4 liquid and 5 + 5 of T3 a day and I am on steroids due to adrenal insufficiency.

28-Mar-2022

Serum free T4 level 12.7 pmol/L (11.20 - 20.20pmol/L)

Serum free T3 level 7.2 pmol/L (3.20 - 6.80pmol/L)

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Do you normally split your liquid levothyroxine into 2 smaller doses

Last 5mcg dose T3 approx 8-12 hours before test

What are your most recent vitamin D, folate, ferritin and B12 results

Are you on strictly gluten free diet or dairy free diet

[posthinking01 in reply to SlowDragon]

No all done 2.00 p.m. - I am unable to rush around in the morning and certainly not without meds.

[posthinking01 in reply to posthinking01]

No gluten free did not agree with me - on lactose free diary - no don't split T4 dose.

[SlowDragon Administrator in reply to posthinking01]

How long before test was last dose levothyroxine and last 5mcg dose T3

[posthinking01 in reply to SlowDragon]

Levo would have been 8.00 a.m. and T3 same time.

[SlowDragon Administrator in reply to posthinking01]

So only 6 hours before test

So Ft4 is falsely high….if you had taken last dose 24 hours before test….Ft4 would have been even lower …..how much lower ….difficult to say

Many people on levothyroxine plus small dose T3 find that we need BOTH Ft4 and Ft3 at least 50-60% through range

Your Ft4 is very low

Suggest you experiment with increasing your dose of levothyroxine…..and possibly try splitting dose too

Eg 50mcg in morning and 50mcg later in day

FT3 is falsely high as only 6 hours before test….so Ft3 would have been lower if left 8-12 hours before test

[posthinking01 in reply to SlowDragon]

I never thought of splitting T4 - I do with T3 obviously- as I have no thyroid is it ok to still take T4 ?

[SlowDragon Administrator in reply to posthinking01]

Most people on liquid levothyroxine seem to split dose because it’s absorbed quickly

A few members on levothyroxine tablets split the dose.

I find it much better to split dose levothyroxine as two doses waking and bedtime and T3 split as 3 doses, waking, mid afternoon and bedtime

[SlowDragon Administrator]

Are you also diabetic

If yes, type one or type 2

[posthinking01 in reply to SlowDragon]

No

[SlowDragon Administrator in reply to posthinking01]

When were vitamin levels last tested

[posthinking01 in reply to SlowDragon]

They are fine

[pennyannie]

Hello postthinking:

Well I had RAI thyroid ablation in 2005 for Graves Disease and could manage on T4 at 125mcg until around 2013/14 when i suspect my thyroid was fully disabled, and amongst other things thought I had developed dementia as my memory seemed to have disappeared.

After reading up on here, and optimising vitamins and minerals I asked to be switched to Natural Desiccated Thyroid which was denied as was the trial of T3 alongside my T4 :

i then started self medicating and my first experiment was to increase my T4 - but this didn't work and all I got were horrible headaches :

Adding T3 to a lower dose of T4 worked, I woke up relaxed and as if a light bulb had been turned on in my brain:

I then trialled NDT which I prefer as it appears ' softer ' on my body and contains all the same known hormones as that of the human gland and I'm now over 4 years on, and much improved on this full spectrum thyroid hormone replacement.

A fully functioning working thyroid would be supporting you with a percentage of T3 so it just seems logical to me that both these vital hormones need to be prescribed to restore balance and homeostasis.

I think you do loose the process of conversion when without the thyroid gland and see it as a bit like needing one's pilot light replaced.

Though I do read that some people can get by on T4 monotherapy but that didn't work for me.

[posthinking01 in reply to pennyannie]

Hi thanks for your helpful reply - I was wondering whether the thyroid wouldn't be able to process T4 as before - I am going to give everything a whirl. So thank you. Unfortunately though NDT did not agree with me I overheated on it - it was awful. Too much iodine I think.

[pennyannie in reply to posthinking01]

Well, as I see it, if the gland isn't there any longer there is nothing there to process, moderate, or adjust and balance anything any longer

Pity about the NDT not suiting you but at least you tried this option and hopefully find something that suits you.

On T3 I felt a little turbo charged on the lowest possible dose I could cut 6.25mcg , though it turned my brain back on and I realised what I had been missing was my brain and cognitive functions !!!

[posthinking01 in reply to pennyannie]

Yes shame about NDT but I was dripping with perspiration - and this went on for months - it was dreadful - literally perspiration dripping on my papers at the office - I just thought it was my usual overheating issue - till UK endo said(I had got the NDT from Belgium not the UK) I think you are over medicated - and then I thought oh for goodness sake of course - so came off it and felt better but I have never ever felt well.

[pennyannie in reply to posthinking01]

Well yes, there is always the risk of over medicating with whatever form of thyroid hormone replacement you take.

I self medicate and built up my NDT in 1/4 grain increments.

I monitored my symptoms, blood pressure, pulse and temperature and its inevitable that you do go a little over to know to drop back that last 1/4 grain increase and the overmedication is ' mild ' and nothing like the overmedicating I experienced when trialling a T3/T4 combo.

Yes, I thought, despite feeling a little turbo charged on the T3 I'd continue with the experiment as I'd been ill for some time and thought I had to go through this feeling to feel better and made myself very unwell.

I do also supplement adrenal glandular as read the thyroid and adrenal glands work together and that the adrenals ' pick up the slack ' when the thyroid fails, so having had RAI thyroid ablation which is known to also been be taken up by these glands I thought I'd try and repair them as well.

Your situation is not straight forward as you have been medically acknowledged as having adrenal issues and taking steroids and I do not know how this impacts on your thyroid results and am sorry you are not finding any relief of symptoms.

[tattybogle in reply to posthinking01]

Most of the conversion of T4 to T3 does not happen in the thyroid.. it happens in other places / organs in the body . The thyroid does do a bit of converting .. so with no thyroid at all you lose that bit , but the rest of the body will continue to convert T4 to T3 . ,

[posthinking01 in reply to tattybogle]

Thanks that's interesting .............