On thyroxine 20 + years, now v high t4, low t3

[pepipop]

Hi everyone.

I had a partial thyroidectomy, in 1988. I was placed on thyroxine (t4) but always had to change my diet to feel well, to a very spartan diet of fish and veg, and then I felt really well - otherwise very cold, felt mentally flat, etc... This went on for years. Over that time, I believe I always had a suppressed TSH, (I never saw my results) as this was recommended by my endo, at that time, to keep T4 in the upper end of the range. My dose was 150mcg - summer/175mcg - winter mths.

Over the past two years, my thyroid has been going haywire.

Dec 2015 - I was on around 150-175mcg on and off, had lost weight, hair fallen out, gaunt looking but not 'hyper' in any way.

TSH: <0.01 mIU/L 0.27-4.2

T4 free: 25.6 pmol/L 12.0-22.0

Total T3: 1.59 nmol/L 1.3-3.1

I then reduced my thyroxine to 125mcg per day and returned, in March 2016, as I 'felt' hypo but to my surprise my T4 was even higher!

TSH: <0.01 mIU/L 0.27-4.2

T4 free: 25.7 pmol/L 12.0-22.0

T3: 1.57 nmol/L 1.3-3.1

I reduced again to 100/125 alternative days - i.e. 112mcg/dy. Blood test in June 2016

TSH: <0.01 mIU/L 0.27-4.2

T4 free: 19.2 pmol/L 12.0-22.0

T3: 1.34 nmol/L 1.3-3.1

At this point I mentioned to my GP that I was not converting and my total T3 was too low, so I asked for a trial with T3. I have been using it since, at 5mcg / day - not that it seems to make much of an affect. It did the first week or so, but not really thereafter.

In Feb 2017, after T3 addition these tests were taken.

TSH: <0.01 mIU/L 0.27-4.2

T4 free: 20.9 pmol/L 12.0-22.0

T3: 1.93 nmol/L 1.3-3.1

My queries would be:

Needless to say my GP continually mentions my suppressed TSH, but I have tried to raise, it in the past, and my free T4 actually went below normal and it was still suppressed. I still do not feel good, and since lowering my T4 I have constant rhinitis/post nasal drip/sinusitis/swollen nose. I also developed 'flat' feet, pains whilst walking, joint pain hands/wrists etc. If I raise my T4 to 125 mcg my nose totally goes back to normal, sinusitis goes, feet seem to go back to normal but my t4 goes out of range and my hair falls out!

Also, I do not understand after lowering my dose from 150/175 to 125mcg that the t4 reading was even higher! Could it infer that I have a lot of RT3 and by lowering the T4 dose it helped to reduce RT3? Also, I cannot find anything in the literature - but could RT3 suppress the TSH, as mine is always very suppressed and/or could it cause hypo symptoms even though my t4 and t3 are now, more or less, in range?

Would NDT maybe work better, I have tried Armour in the past.

Currently I feel off, mentally very flat, never any energy, etc. I did get a few sweet spots over the past year, of felling 'normal' but am currently not feeling great, joint pains, and rhinitis is much worse.

I hope this makes sense.

Many thanks

[Nanaedake]

I too have had a partial thyroidectomy and like you, when I reduced my meds, FT4 went over range. I have no idea why except perhaps that the pituitary gland, sensing less thyroid hormone then triggers the remaining thyroid to release more hormone. Perhaps it would fall back down into range again once it levels out?

Hair falling out may be due to low ferritin so I would get all your vitamin levels checked. B12, folate, ferritin and Vitamin D. When you have results then post here. Docs often say all fine if anywhere in lab range but you won't feel well if bumping along the bottom of the range.

Also, as you've been on higher doses of thyroxine for a long time, ask your doctor to check bone density. You say you've got joint pain and even though the doctors say osteopenia/osteoporosis does not cause pain, the pain could be a signal all is not well. If you are menopausal or past menopause then definitely check it out and ask your doctor whether you need calcium/vitamin D supplements.

[pepipop in reply to Nanaedake]

Thankyou for your reply.

Yes, I had those tests as well, in Feb 2017, but they were all fine. However, I was taking supplements at the time for B12. Also, I've tried CA/Vit D supplements before and it makes me feel really wired, for some reason calcium and I do not agree at all.

I also had a bone density test ~ 7 yrs ago, with the suppressed TSH for over 20 years, and it was fine.

Yes, I went through menopause, years back, but have been using HRT. Menopause has possibly contributed to the strange goings on.

I tried to reduce my Thyroxine, in Oct 2017, to 100 mcg and my GI tract seemed to shut down, no movement of food and I have had dreadful GI problems ever since and now have to be tested for SIBO.

All my symptoms would seem to infer low thyroid, the 'newly' acquired rhinitis especially. When I increase thyroxine to 125mcg it goes away completely and I feel better mentally and energy wise but then my T4 goes out of range - as well as my hair falling out.

vit B12: 637 ng/L 197-771

folate: 4.6 ug/L -

ferritin: 68 ug/L 13-150

[Nanaedake in reply to pepipop]

folate is very low at 4.6, I think, although you don't give a lab range. Ferritin is not too bad but might be better a little over 70. B12 and folate work together so you might find a good B complex to raise the folate level. What about vitamin C, magnesium and zinc? Have you tried supplementing with those to see if they help? Is your FT3 always in range when FT4 goes over range? If so then FT4 might be high to try to convert to more T3 I suppose. HRT might affect the way thyroid hormone functions and if you're on any other meds that might affect it too. Maybe interfering with the conversion process?

[SlowDragon Administrator]

Have you had vitamin D tested?

Post nasal drip or rhinitis could be dairy intolerance, which is pretty common with patients on Levothyroxine if inadequately treated

5mcgs is a very small dose of T3. Why no increase?

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]

Also ask for list of recommended thyroid specialists, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

[pepipop in reply to SlowDragon]

Many thanks for all your replies.

The Toft article is v interesting, and I am considering getting an appointment with him, due to this weird situation. The only problem is by increasing thyroxine, and hence a higher T4 reading, that corresponds with my hair falling out in handfuls. When I reduce it to 112mcg, it stops. Yes, I have tested my Vit D and it has been low in the past, however although Vit D helped the first few times, recently it has been like a placebo - but in the past worked straight away, i.e. more energy, etc.

I also obtained a free T3 reading, several months ago, see below. I 'assume' that my higher T4 readings could be due to the fact that I don't seem to convert much to T3. Mind you, I never saw my results for 20 odd years prior - only recently.

Even with T3 (albeit small -5mcg), my free T3 was still low. I admit to not getting much of anything from T3. I have tried to increase it, but I 'think' the higher thyroxine dose seems to work better - but why would this be, if the benefits of higher t4 is solely due to it's conversion to t3? I think T4 on its' own must have some effect on the body, possibly effects the immune system - who knows, as there is v little research on t4 aside from its conversion to t3 - although there are receptors for T4 in the body. tiredthyroid.com/rt3-6.html

You would assume if it was T4 to T3 only benefit, that extra T3 would help me more so rather than more Thyroxine.

All v confusing.

TSH: <0.01 mIU/L 0.27-4.2

T4 free: 19.8 pmol/L 12.0-22.0

T3 free: 4.4 pmol/L 3.1-6.8

comments: FT3 test is not currently on accreditation scope.

T3: 1.55 nmol/L 1.3-3.1

[SlowDragon Administrator in reply to pepipop]

Have you tried split dose of T3?

After much experimentation I now take 5mcg three times per day, waking, 2pm and bedtime (on empty stomach and then nothing apart from water for at least an hour after)

Find the bedtime one particularly effective, also prefer taking Levo at bedtime too

Obviously we are all different and prefer different options

Different brands of T3 work differently for different people too (just to complicate matters!)

I have confirmed heterozygous DIO2 gene and Hashimoto's, gluten intolerance and multiple vitamin deficiencies. Though vitamin levels have improved significantly since being on T3

[pepipop in reply to SlowDragon]

Trying again today.

Have taken t3 - 5mcg this AM, and then a further 2.5mcg around 1.30pm. Initially, it makes me feel weird and wired and irritable, so may be a cortisol problem - who knows. But shall try 7.5 mcg per day to see how I go but it hasn't helped much in the past.

I will also leave more time between both doses.

[pepipop]

I meant to ask what does T4 pooling mean, I've read the term on several boards? What are the symptoms if this occurs?

Thanks