Advice on results - Reduce T3 ?

[Sami-M]

Advice on Results Please

I’d be very grateful for advice on where you think I should go from here.

September 2018 - Diagnosed Hypo.

SEPTEMBER 2018 Results:

T3 101.60 ng/dl (80-200)

T4 6.41 ug/dl (5.1-14.1)

TSH 5.560 uIU/ml (0.27-4.20)

VIT D 18.29 ng/ml (20-100)

VIT B12 332 pg/ml (197-771)

Unfortunately, the doctor was a TSH only specialist (!!!) and started me on 25mcg T4. No tests carried out on FT3 FT4.

OCTOBER 2018 Results:

FT3 2.60 pg/ml (2.0-4.4)

FT4 1.21 ng/dl (0.93-1.70)

TSH 3.83 uIU/ml (0.27-4.20)

Anti-TG 264 (>60 positive U/ml)

Anti-TPO 1300 (>60 positive U/ml)

VIT B12 293 pg/ml (197-771)

Iron Serum 68 (60 - 180 ug/dl)

TIBC 341 (250-450 ug/dl)

% Saturation 20 (20-50 %)

Ferritin 22.9 (13 -150 ng/ml)

October : Still on 25mcg T4 (Thyroxine)

DECEMBER 2018 Results:

FT3 2.73 pg/ml ( 2.30-4.20)

FT4 1.16 ng/dl (0.89-1.67)

TSH 2.94 uIU/ml (0.35-5.50)

VIT B12 648 pg/ml (211-911)

VIT D 109.40 nMol/L (75-250)

END DECEMBER 2018: Discontinued 25mcg Thyroxine at once & started 30mcg T3, and gradually increasing to 60mcg T3

JANUARY 2019

FT3 2.49 pg/ml (2.3-4.20)

FT4 0.94 ng/dl (0.89-1.76)

TSH 4.891 uIU/ml (0.55-4.78)

Anti-TG 259 (>60 positive U/ml)

Anti-TPO 1300 (>60 positive U/ml)

ACTIVE B12 178.90 pmol/L (25.1-165)

VIT D 85.22 nMol/L (75-250)

April 2019, increased T3 to 75mcg for 3 days, ended up in hospital, with pulse around 100. Hospital cleared with no cardio issues. Hospital thyroid results are below. Post hospital I reduced T3 to 50mcg. Up until hospital, I’d never felt better. I only increased T3 as I wasn’t losing weight. Now on T3 at 50mcg, once again the fatigue is kicking in every few hours. I’m just exhausted doing very little.

APRIL 2019

FT3 11.8 (2.8-7.1) pmoI/L

FT4 3.9 (11-22) pmol/L

TSH 0.019 (0.3-4.2) uIU/ml

Am I over medicating ?

Do you think I need to reduce T3 and if so how fast can I reduce it ?

Am I correct in assuming, I can get my T3 in normal optimal range in a short space of time by simply reducing the dosage ?

I have a healthy diet with plenty of protein and vegetables/salads but still not losing weight, any clues ?

CURRENT : 50mcg T3

Other DAILY meds:

1. Already had B12 loading shots, approx 25 shots over 12 weeks.

2. Vit D, 10,000 IU

3. Vitamin K2 mk7 100mcg

4. Iron (Fer Fumarate) 65mg x 2

5. Probiotics

6. Magnesium Glycinate 800mg

7. Selenium 100mcg

8. Zinc 25mg

9. B12 Methylcobalamin 1000mcg

10. B Complex

11. Vitex 200mg (Chaste Berry)

12. Vitamin C 1000mg

13. Omega 3 - super concentrate

[Aurealis]

Sorry but I think you haven’t given Levo a proper try and have introduced T3 needlessly and too soon. Most people can get well on Levo, for many years at least. You just haven’t tried a high enough dose. I’d guess that your fatigue is caused by high T3. By the way, I t isn’t a weight loss drug. I’d just stop it abruptly.

[Sami-M in reply to Aurealis]

Thanks Aurealis. One thing my alternative doctor had stressed upon was never to increase or decrease T3 by a maximum of 12.5mcg and ideally 6.25mcg, weekly until the best symptoms.

[Aurealis in reply to Sami-M]

If you leave it off for one day you’ll feel it come down and 5hen be better able to judge perhaps

[Hidden]

Since your most recent FT3 levels were over range it's more than likely that you were overmedicated so hyperthyroid.

I have had FT3 levels like yours in the past and ended up with similar symptoms although I was never hospitalised. But I did have unpleasant and sometimes frightening symptoms such as racing heart, hyperventilation, dizziness, and anxiety. They all went away when I went off T3 and back on T4 only. While on it, I never fully realised what a powerful hormone T3 is.

The most striking symptom was feeling tired and wired at the same time.

I'm not saying that nobody needs or should take T3. I myself felt very good on NDT for several years, after ten years on T4 only. But, looking back, I realise that once on a high enough dosage of T4 (one that kept my TSH at the bottom of range or slightly below, with FT4 levels close to the upper normal limit) led to 95% symptom-relief. The remaining and most bothering symptom was an inability to lose weight, and that was the main reason I saw a doctor prescribing NDT. I was convinced T3 was the missing piece of the weight loss puzzle. It is also easy to self-diagnose with the help of thyroid blogs claiming that only NDT or T3 can fully restore thyroid health. After visiting a number of such blogs, I ended up convinced nobody in the whole world could ever feel truly well on T4 only.

But I never had the symptoms many others complain about (feeling cold, tired, hair loss, dry skin...) while on T4 only. I was able to work full-time and live a perfectly normal life and, if I had not been overweight, I don't think it would ever to occurred to me to switch to NDT.

Why were you put on T3 to begin with?

If you do in fact need some T3 in addition to T4, you need to make sure you don't take more than you need, and also multi dose it to avoid FT3 levels spiking and falling too rapidly. A healthy thyroid gland is said to produce ca 6 mcg of T3 a day, or 10 mcg if you take into account the fact that some of the T4 to T3 conversion takes place inside the gland itself, and the rest of the T3 (ca 25 mcg) comes from the conversion of T4. If the conversion is not impaired (and in many hypothyroid patients, it's not), it's not likely you'd need 75 or even 50 mcg of T3 in addition to T4. In any case, your symptoms indicate you were taking way too much T3.

If you did not need T3 in the first place, I agree with the advice to go back on T4 only and give it a chance.

[Sami-M in reply to Hidden]

Thank you very much thecats68. I was prescribed 25mcg T4, upon initial diagnosis in September 2018 at a hospital in Asia, on my travels. I’m so grateful I stumbled upon this site. I managed to find an alternative doctor, who stressed on optimising B12, Vit D, Ferritin etc. I had felt awful on T4, for the 3-4 months, fatigue, foggy head, lethargy etc.

Alternative doctor took other adrenals/ hormone tests, Cortisol/DHEA-S, Estradiol, Progesterone, Testosterone etc and put me on 30mcg T3. Over weeks, I increased to 60mcg. Whilst the changeover symptoms took 4 weeks to settle, (perhaps flushing RT3) I’ve never felt better whilst on T3. This alternative doctor always maintained that I’d only recover on T3. Incidentally he had a compounding pharmacy that also supplied T4 & T3 and also combinations.

I then look at posts by Shaws and some links Shaws has gratefully shared,

*

web.archive.org/web/2010103...

*

web.archive.org/web/2010103...

I’d be too fearful to swap the T3 for T4 at this stage. During the course of the last 2 days, I’ve reduced from 50mcg T3 to 37.5mcg T3. I feel more energised and stronger. I agree I’m over medicated, but this spike may partly be explained by the 3 day increase to 75mcg.

I don’t believe the suppressed or low TSH, or higher than range FT3, necessarily means I’ve now become hyperthyroid? I believe Dr Lowe, didn’t necessarily consider suppressed TSH to be dangerous.

I’d also be very grateful to hear from others. Very many thanks.

[Hidden]

PS. This is an interesting article about someone going off NDT and back on T4 only:

pauljonesblog.com/tag/hypot...

[Hidden in reply to Hidden]

I don't think a suppressed TSH is dangerous either, but FT3 levels seriously above range are indicative of over medication (drug-induced hyperthyroidism). My own problems did not appear until my FT3 levels rose above range; before that, I had a suppressed TSH for years with no problems whatsoever.

25 mcg of T4 is a starting dose for elderly people and those with heart disease; as far as I know, 50 mcg is the usual starting dose in most cases. So if you never got past 25 mcg of T4, that would explain why you still had hypo symptoms. You seem to have switched to T3 only very quickly, without even trying a normal maintenance dose of T4 (usually, 100-200 mcg daily).

Even if you belong to the category of people who do best on T3 only, you have clearly been taking too much.

Hopefully, others will chime in.

[SlowDragon Administrator]

Levothyroxine wasn't given a chance to work, by medics leaving you on ridiculously low dose of Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Your high antibodies confirm you have Hashimoto's

Are you on strictly gluten free diet?

Have you tried adding Levothyroxine in slowly, starting with 25mcg and retest 6-8 weeks after each dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

88% benefit from strictly gluten free diet

thyroidpharmacist.com/artic...

Going gluten free is a strategy that everyone with Hashimoto’s should try. In some cases, we see a complete remission of the condition; in other cases (88% of the time), the person feels significantly better in terms of bloating, diarrhea, energy, weight, constipation, stomach pain, reflux, hair regrowth, and anxiety.

todaysdietitian.com/newarch...

Many clinicians report that eating a gluten-free diet may help improve thyroid function in nonceliac gluten intolerance. “Getting gluten out is primary for patients with Hashimoto’s, even without celiac disease,”

[Sami-M in reply to SlowDragon]

Very grateful for the comprehensive information. I shall go through all. Thank you. Since 2-3 months, I’ve now settled at 25mcg T3 only, single dose at 9am. Symptoms mostly good, but recently some palpitations and little tired by late afternoon.

Following are current June 2019 results.

Bloods were taken at 9am, 24 hours after my last dose of T3. I also didn’t stop the B Complex, that has 400mcg Biotin. Not sure how accurate the FT3 +20% adjustment is. Didn’t realise it should be 12 hours for T3. I’ve not tried the gluten free yet.

I’m hoping for a successful pregnancy in October 2019 if symptoms/results are all looking good. Would you be able to offer any advice in relation to pregnancy and whether you feel I need to look out for anything else ? Do you think it’s too early to be considering a pregnancy? Is pregnancy viable if Anti-bodies are still high ?

Vit B, Vit D, Folate, Ferritin all heading to optimal.

JUNE 2019 Results:

FT3 4.0 (3.5-6.5 pmol/L)

FT4 5.54 (12-22 pmol/L

TSH 0.036 (0.27-4.20 uIU/mL)

25 OH Vitamin D 59.1 (30-100 ng/ml)

Iron 68.5 (33 - 193 ug/dl)

TIBC 297.4 (255 - 450 ug/dl)

UIBC 228.9 (135 -392 ug/dl)

Ferritin 50.7 (10-291 ng/ml)

[SlowDragon Administrator in reply to Sami-M]

There is very little research into wether pregnancy is advisable on T3 alone

Almost all patients on T3/T4 combination dose are advised to revert to Levothyroxine only, immediately pregnancy is confirmed, even if allowed to be on both while TTC

There's some doubt that T3 may not cross the placenta

If considering pregnancy you will need to be taking Levothyroxine, even if you continue taking small dose of Liothyronine while TTC

Your results suggest under medication

FT4 is well below range

TSH completely suppressed (this happens on almost any dose of T3 even if under treat)

FT3 - difficult to assess as you left 24 hours not 12 hours

Biotin may have affected test results

Vitamin D is likely too low, recommend to be at least around 80nmol and around 100nmol may be better

Ferritin looks a little low

Obviously absolutely essential to test B12 and folate

Would suggest you add 25mcg Levothyroxine and retest in 6 weeks

Likely to eventually need at least 75mcg-100mcg Levothyroxine.....and as Levothyroxine increases corresponding small reduction in T3

[Sami-M in reply to SlowDragon]

Thank you Slowdragon.

We’ve recently been forced to re assess the possibility of a pregnancy due to strange symptoms for last 10 days. Also we really need to understand more about the changeover to T4 only and I think I need to be at least feeling ‘normal’ before we seriously start considering pregnancy. We’re disappointed but we really want to do all we can to minimise risks.

As an immediate, I increased T3 from 25mcg to 31.25 mcg since your reply. And considering increasing to 37.5mcg tomorrow.

Vitamin D I believe is almost optimal as it’s 25 OH Vitamin D 59.1 (30-100 ng/ml) which I believe equates to 147 nmol/l. Please advise if you think I’ve got it wrong ?

Ferritin, seems to be taking its time but improving.

I’ve been feeling pretty good but seem to have gone wrong somewhere in the last ten days. Feel like I’m in slow motion, lethargic, difficult thinking straight, foggy brain, almost feel like gasping for air and a heavy chest, lack of interest in anything.

I’m wondering whether I simply need more T3? Or are there are cases of people who may need both T3 and some T4 perhaps? This last 10 days has really baffled me as my FT3 is heading in the right direction but FT4 is low as I’m on T3 only. Does that matter or is it more beneficial for some people to increase FT4 also by taking T4 in addition to the T3 ?

Confused and tired.

Perhaps I should post as a new post ?

Thanks!

[SlowDragon Administrator in reply to Sami-M]

Sounds more like too much T3

Suggest you consider going back on Levothyroxine and reducing T3

Vast majority of patients start on Levothyroxine

You never had long enough on Levothyroxine or at steady increase in dose

[Sami-M in reply to SlowDragon]

Would you suggest then 31.25mcg T3 and 25mcg Levothyroxine taken at same time for 6 weeks and then drop the T3 by 6.25mcg and increase Levothyroxine by 25mcg and so on.

Would you think I need to get to a point of being on Levothyroxine only for a few months and depending on symptoms, at some point start adding T3 again ?

[SlowDragon Administrator in reply to Sami-M]

Yes that sounds reasonable plan on how to add Levothyroxine and reduce T3

Make sure to regularly retest vitamins too

You won't know if you need T3 until Levothyroxine dose is high enough to bring FT4 to near top of range

[JAmanda]

Maybe I misunderstood something but does the OP realise t3 is 4-5 times stronger than t4. Perhaps I’m misreading! So going from 25 levo to 50 lio is like going from 25-200/250 levo overnight..? Eek.