Encouraging results: Hi All, Just thought i'd... - Thyroid UK

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Encouraging results

t3warrior
t3warrior

Hi All,

Just thought i'd give you an update with my blood results after taking myself off thyroxine approx 5 weeks ago (and decreasing from 150mcg to 0 since March) - I have a partial thyroid, was convinced levo wasn't working and wanted to give my own thyroid a chance on its own... my bloods have come back

TSH 4.02 [0.35 - 5.5];

T4 15 [9-23];

T3 4.2 [3.5 to 6.5].

Now, my TSH is comparatively high - it was extremely suppressed at about 0.1 when i was on levo, but I would expect my TSH to be high given my body will be asking for thyroxine and my thyroid is having to produce its own for the first time in 10 years. The fact i'm still in 'normal' range is encouraging. I don't recall my previous T4 result, but i'm mid range and T3 is down a bit - that was up at 5 when I was at my highest dose, but i'm hoping over time that this will improve.

I've asked to speak to my doctor about these results - they came back as 'normal no action' which again was encouraging i guess, but clearly i'd like to discuss the fact these are 'off-meds' results with my GP. The fact i've gone from 150mcg levo to 0 with these results kind of confirms my suspicions that my body wasn't utilising the levo very effectively.

i'd be interested in everyone's thoughts.

14 Replies
oldestnewest

just found previous results were tsh 0.1, t3 5.5 and t4 24 with same reference ranges. so it was looking like I was over medicated in order to get a decent t3 score.

and - i've physically and mentally felt the same throughout the whole period; other than gradually getting fatter and fatter regardless of levo dose; except for the period when I self medicated with a mix of t3/4 when i was able to lose a bit of weight slowly. but my husband was worried about sourcing t3 off the net, so I stopped (and put 2 stone back on).

TSH 4.02 [0.35 - 5.5];

T4 15 [9-23];

T3 4.2 [3.5 to 6.5].

I'm going to assume that the T4 and T3 results are Free T4 and Free T3 rather than Total T4 and Total T3.

Your T4 result is 43% if the way through the range which is too low for most hypothyroid people.

Your T3 is 23% os the way through the range which is much too low for most hypothyroid people.

Have you considered trying a combo of Levo and T3? Or NDT? Clearly Levo on its own wasn't working for you. But you would almost certainly have to self-medicate to try other things.

High TSH? Means your thyroid is struggling?

t3warrior
t3warrior
in reply to Baobabs

i'd expect it to given it has been inactive for so long, but to be honest I thought my results would be far worse than they are. I'm hoping over time, as with a muscle, if you force it into use it will eventually get stronger.

Baobabs
Baobabs
in reply to t3warrior

I'm not sure it works like this. I admire your spirit and somewhat bravery. I considered this approach at one time but for me I was in denial as to the gravity of the disease. Please heed the advice of our forum administrators and experienced sufferers.

shaws
shawsAdministrator

If we are hypothyroid to stop taking thyroid hormone replacements could have a serious effect on your body (heart and brain) as our millions - if not billions of T3 receptor cells need T3. Levothyroxine (thyroxine) is T4 only. It has to convert to T3 - the only active thyroid hormones. I think it is rare for a dysfuntional thyroid gland to be reinvigorated and begin to send out hormones again.

If we don't have sufficient T3 either because we don't convert levo to sufficient or dose is too low, we can feel quite unwell. Many feel better on a combinatiion of T3/T4

To stop taking levothyroxine to tryt to restart your thyroid gland doesn't work and to withdraw important hormones can cause harm.

The TSH is only good when we are undiagnosed. After diagnosis and on any thyroid hormones it is immaterial. We need a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the range.

TSH 4.02 [0.35 - 5.5];

T4 15 [9-23];

T3 4.2 [3.5 to 6.5].

When a doctor refers to the above as 'normal' they are talking about someone who is not hypothyroid.

You need a TSH to be 1 or below and a Free T4 and Free T3 to be towards the upper part of the range. Your T4 could be nearer 20 and T3 could be nearer 6. Tests that are Free T4 and Free T3 are more informative.

t3warrior
t3warrior
in reply to shaws

hello - i've done a full reply below. thanks.

SlowDragon
SlowDragonAdministrator

Suggest you test your cholesterol levels, likely to be high when hypothyroid (which your results suggest you are)

Also vitamin D, folate, ferritin and B12 - all likely to be low and dropping further since you stopped Levothyroxine

Many patients need small addition of T3 alongside T4.

Professor Toft recent article saying, T3 may be necessary for many especially after Thyroidectomy

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

Professor Toft - President of British Thyroid Association 1996-2009

Past President of the Royal College of Physicians of Edinburgh

Physician to the Queen in Scotland

Consultant of Endocrinology, specialising in thyroid disease, at Royal Infirmary of Edinburgh 1978-2009.

thanks. i'm with you re t3 - you are preaching to the converted - still can't convince the docs though.

Hi all, thanks for your replies. I have tried mixing t3/t4 and yes it did work better for me. However, I cannot (along with most of us) get t3 from the doctor or endo (after many years of trying), so I had to self source from the internet which is highly unreliable and the market is flooded with fake drugs. My other half was really concerned that I might end up taking something which would do more harm than good, so I stopped with the t3, went back to t4 alone and put on 2 stone. So T4 wasn't working for me, I have half a thyroid and I was hoping my natural hormone might be accepted better by my body than the synthetic hormone. The point to this exercise is to see if a gland which will have gone into atrophy due to using the synthetic hormone, could be forced back into life by gradually withdrawing levo. I'm low on vit D, ferritin, and B vits, so i'm supplementing accordingly. My cholestorol and diabetes are fine.

I absolutely agree i would be better off on T3, but I feel I am risking my health by self sourcing. I am going to approach my GP again for a private script, as i am willing to pay, but as yet they are not willing to prescribe.

SlowDragon
SlowDragonAdministrator
in reply to t3warrior

Roughly where in UK are you?

SlowDragon
SlowDragonAdministrator

Have you ever done DIO2 gene test?

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

Might explain why Levo makes you feel worse/no better than a part functioning bit of thyroid gland and why adding T3 was better

I'm in the north east. No I haven't done the gene test. How do I go about this and would it enable a different course of treatment?

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