Response from endo

[Trisha15]

Hi all

Just thought I would share my endos response to my latest blood tests. At our appointment in September he suggested I try increasing my levo as he wasn’t convinced by T3 or NDT. 8 weeks later my TSH suppressed and T4 high that GP wanted to reduce my dose from 150 to 100. Had been on 125. I refused until they did a T3 test - (this came back at 5 or 51.35% through range) upshot was GP instructed me to go back to 125.

I emailed endo asking to be put in T3 trial as I was clearly a poor converter and feeling better with increased T3 levels but unacceptable TSH abd T4) and this was his response:

Ref. Range (Units)Abnormality

Free Thyroxine* 23.512-22 (pmol/L)Above high normal

TSH* 0.050.27-4.2 (mIU/L)Below low normal

thank you for your email, i have enclosed your recent thyroid function, your t4 was just slighly raised above normal and tsh was trending downwards but not suppressed, this was on levothyroxine 150 mcg od.

I see your GP has checked some other tests which are fine, although your ca 125 was just slighly up and i presume your GP will follow this up.

With regards t3 or NDT i dont tend to prescibe this as i dont feel there is sufficient evidence base behind the use of this and from also our BTA guidelines.

Another option is to try levothyroxine 150/125 mcg on alternate days to see how this helps with your symptoms

i hope this is of help

Well - no not really. Back to square one !

[SlowDragon Administrator]

Previous post discussing low vitamin levels

healthunlocked.com/thyroidu...

When were these last tested

Exactly what vitamin supplements are you currently taking

Vitamin B complex?

Vitamin D and vitamin K2

Magnesium

Selenium

Suggest you retest in new year

Are you still on absolutely strictly gluten free diet

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

.......NHS and Private

[e-mail]

But essential to have all your vitamins optimal first and, if gluten free diet helps, strictly gluten free

[JAmanda]

I see people on here self source T3... might be worth an experiment.

[Hashihouseman]

Complain formally via PALS, use healthy normal blood levels as reference not lab range i.e. ft4 around 14-15 and TSH around 1-2. Your levels as quoted are highly unphysiological and if you are unwell it is likely because of that. You have a right to be treated according to criteria for health and well-being and those criteria are not just somewhere in the lab ranges.... Moreover it is impossible to evaluate your conversion efficiency without doing graded replacement by levothyroxine (no t3) with repeat full thyroid function tests ever 6 weeks covering a range of levothyroxine dose levels e.g. 100, 125, 150... Establishing the ft3 and tsh at varying stable levels of t4 and levothyroxine is the only way to show conversion realities. However, that’s a long and tedious and sometimes highly uncomfortable road and the pragmatic option is simply replace with absolutely physiological amounts of t4 and t3 in combination and observe all the effects, adjusting up or down from that accordingly. The other angle is that the human thyroid doesn’t produce 20% of its t3 in the thyroid for fun, it’s part of a fine and precise feedback mechanism and supply of t3 and if the thyroid gland can’t deliver that regardless of how well we may covert t4 then we are physiologically disabled compared to a healthy euthyroid person. If the aim of therapy / treatment is to restore euthyroid state then everyone should be able to have t3 In physiological proportions with t4 (e.g. 5-7.5mcg daily) if they feel better for it and clinical indicators are restored to euthyroid criteria e.g. tsh 1-2 ft4 14-16 ft3 4.4-5.0. Challenge your doctors and specialists to actually know what it is to live without thyroidal t3 and hammer the point that their only knowledge is theoretical empirical not actual physiological in terms of your wellbeing. And if your blood levels are not physiologically euthyroid compared to physiologically normal euthyroid population data then you have a right to be treated according to those criteria not simple lab ranges which are so wide as to be almost meaningless in relation to predicting an individuals necessary condition. Make sure any symptoms of over or under thyroid treatment are presented and remind them the object of treatment is to ameliorate hypothyroidism and do no harm. There is evidence of harm potential from overly low tsh and that excess t4 itself reduces cellular conversion rates for t3 and confuses feedback in other ways e.g in the hypothalamus and pituitary loops which may be a cause of chronic ill health e.g. profound headaches and a weird mix of hyper and hypo symptoms. And forget about special diets vitamins supplements etc.. thyroid sensitivity is far far more powerful than any of that lot and they are a distraction from focus on getting the dose regime of replacement thyroid hormone right for you.

[GrowingVeg]

Gosh sounds like your going round the houses! How frustrating... I'm working on vitamins on vitamins at the moment. I got vitamins tested and although the GP said in range, I've consulted here and they are on the low side. Since supplementing Vit D and B vitamins I can honestly say I am feeling much better. I also eat Brazil nuts that are high in selinium (not had it tested). It dosent fix the thyroid problem but has certainly helped me.

[Trisha15]

Thanks everyone.

It’s very disheartening, especially when you think you are just starting to get somewhere. The endo clearly had no intention of prescribing me anything else other than levo or perhaps HRT

Slow dragon - yes I am strictly gluten free and it has made a difference generally. I also supplement with vitamin D and B12 or a B complex. I also take oil of evening primrose. Last bloods in summer time all came back normal with B12 on slightly lower side but GP saw no need to do anything. Based on advice from this site though recommendation was to supplement D and B.

I have noticed a big difference in my hair and to a lesser extent my nails.

If it wasn’t for this site, I would have been told all in range and no action needed. I would have ended up on anti depressants and HRT - clearly just a menopausal women with mental health issues! So really grateful to everyone here as otherwise I would have been clueless. The changes I made as a result have made a difference.

But angry at doctors for not helping me on that journey and worse, preventing any further or consistent improvement.

Thanks

[GrowingVeg in reply to Trisha15]

Sounds like you are doing everything you can. I'm sorry to hear it's such a long journey for you. I'm angry with your Dr's for making you go round in circles. So I like Hashihouseman's suggestion of writing to Pals. I don't know where I'd be without being able to tap into the knowledge and support of this community...

[serenfach]

Sorry to hear the endo was so ignorant, but many, many of us here have found the same. We give up and look after our own health, read and realise we now have more knowledge of the thyroid and our own bodies than the so called professionals. So many of us have been labelled "menopausal and mental", it is a good job we are too tired to form an army or we would take over the world!

I too have been down this road, tried T3 and was much much better, then went on to try NDT and nearly got back to my old self, including finding my brain cells again. Have a look at this option. For me it was so worth it, and it may be for you too.

Sending you a hug,

[GrowingVeg in reply to serenfach]

... "So many of us have been labelled "menopausal and mental", it is a good job we are too tired to form an army or we would take over the world!"

Love this line... Made me giggle! I would be so up for forming an army and taking over the world. If I only I had the energy!!

[HashiFedUp]

Go private. Your endo has stated their position and won’t entertain t3 or NDT so you have little option if you want to try meds other than NHS levo. If it doesn’t work, you can always go back to your NHS endo/GP!

[Trisha15]

That’s my New Years resolution sorted!!

Happy Christmas everyone.

Take care and stay safe

[holyshedballs]

your Endo is completely wrong. there is plenty of evidence to support the use of T3 on this site.

Please advise the Endo that the BTA guidelines take account of people who need T3 and recommend that some patients are maintained on T3

they say in particular "We wish to emphasise that the decision to continue or stop L-T3 should be based on

clinical need above other considerations and that the BTA position statement should in no way be used as an endorsement for discontinuing L-T3".

Here is the BTA position british-thyroid-association...

Also the Regional Medicines Optimisation Committee say that patients who need T3 should have it, but in a difficult way. Their guidance is about reducing T3. this states

"In rare situations where patients experience continuing symptoms whilst on levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may be appropriate."

sps.nhs.uk/articles/updated...

I would write back to the Endo informing him of the above, state that my symptoms got worse without T3 got better with T3 and that is the clinical need for T3.

I would also inform him that his failure to act in accordance with the guidance and not recommend T3 when I have a clinical need and to tell me that the guidance says otherwise may be negligent. The best resolution for all parties is to maintain T3 therapy. But that is up to you.