I changed Hana’s thyroid meds a few weeks ago. Way back in December, before her tumour was diagnosed, I’d been sure she had an under active thyroid and I decided over Christmas that I would ensure she received natural thyroid replacement rather than synthetic. There is HEAPS about this online, especially in the very informative ‘Stop the Thyroid Madness’ this website is a thyroid consumer’s bible and a must, must, must read.
Anyway, the tumour was diagnosed, removed and Hana was automatically put on a T4 only medication (a Synthetic Pharmaceutical) and we have been barely keeping our heads above water for six months, surviving the fallout of the enormous surgery. Now, 8 months in, as I make my through each every one of Hana’s medications, perfecting them where I can, I’ve made my way to her thyroid meds, and I made a decision to switch her off the T4 to Natural Desiccated Thyroid.
Natural is the old way of doing it…
A while ago, the only treatment for under active thyroids was Natural Desiccated Thyroid Hormone – or NDT (the thyroid gland from a cow or pig, ground up, dried and put in capsules). This form of medication is as bio-identical as it gets; our thyroids secrete multiple substances including T4, T3, T1, T2 and Calcitonin. NDT includes all these substances. Back then, consumers report that they did VERY well on this hormone replacement. So although it may seem like this ‘natural’ way of doing it is a hippy-herbally thing, it’s actually not, it pre-dated current medical practice for a long time.
But then T4 was synthesised and patented;
Because it is believed that the body can **mostly** convert blood levels of T4 to tissue accessible T3, some clever scientists thought it would be better to make a pill that only contains T4 to replace missing thyroid hormones.
Note some people seem to do OK on T4 only meds. The main reason doctors cite as not wanting to prescribe NDT for their hypothyroid patients are concerns with batch quality and variability, which at the outset is a fair enough consideration. But then, if you start trawling through consumer reports and feedback on the net, there are SO many positive experiences in those using NDT, in my opinion, too many to ignore – without at least trying it first.
Many don’t do well on T4 only. Some people have issues with T4-T3 conversion and something called reverse t3, this leads to them exhibiting chronic hypothyroid symptoms inspite of their taking large doses of T4 to try and compensate. Sometimes doctors will prescribe T3 in addition to T4 only meds to relieve these symptoms, but the fact is, most doctors don’t. Many just go off blood levels of T4 and T3 (the T4 may be really high) but these levels don’t reflect tissue absorption of T3 – and it is the tissue utilisation of T3 that will alleviate hypothyroid symptoms. And so we could start discussing ‘looking at the patient not the blood values’ but that’s a whole new topic.
What about Hana?
Hana appears to convert T4 to T3 pretty well, she doesn’t exhibit obvious hypothyroid symptoms with a higher dose of T4. However, she is VERY sensitive to T4 and will be tachycardic, have insomnia and heat intolerance at the slightest dose increase. Yet she’d still be tired with sluggish circulation. Paradoxical. So it wasn’t to eliminate whole bodily hypothyroid symptoms that I decided to start her on NDT: I just wanted the best possible match to what her body was missing plus I wanted to see if her fatigue and circulation would improve with a bio-identical match.
Let’s just go over the facts again:
Pharmaceutical Thyroid Medication provides a patient with: T4.
NDT provides a patient with: T4, T3, T1,T2 AND calcitonin.
For me it’s a no brainer.
How could someone possibly declare that T4 only medication is the best/adequate replacement therapy when the body itself has evolved (very cleverly) to produce much more than T4? There MUST be a reason why our thyroids secrete these other hormones even if we don’t know what that reason is yet. No matter how convinced medical researchers are that it is “OK” to only substitute one. I personally trust the evolved human body more than a group of scientists who may/may not make some profit off patenting a product that is not bio-identical. Or perhaps they are happy with people leading lives that are just – adequate. Adequate isn’t good enough for me,I want to give my daughter a fighting chance at living the happiest healthiest life that she can with her permanent health conditions.
What happened on the NDT?
So far, after a few weeks on NDT I’d say her overall energy has improved, heart rate has picked up a bit but not to the extent of being tachycardic nor insomniac plus her body temperature has elevated slightly too and this is at a dose of NDT which at the equivalent T4 dose would have given her a very fast heart-rate, difficulty sleeping at night and would also interfere with daytime naps yet her fatigue would still persist. These improvements reflect an increased BMR (basal metabolic rate), which we really need. I’ve actually just had to increase her dose again – so I’ll keep you posted on what happens with the new dose over the next few weeks.
But the most interesting thing I’ve noticed about her? Her face. She just LOOKS better than she has in 8 months. It may sound unscientific – but it’s a pleasure to see a much healthier ‘look’ about her. And hey, I’m allowed to be unscientific right? Nurse Naomi Blog was hijacked by me, the mum, 8 months ago. 🙂
There are lots of others out there who’ve done LOADS of reading on Thyroid meds (it’s a huge, complex topic) so I invite you all to share your research and thoughts below.
There is still much more work to do, I’ve only just started tinkering with and perfecting Hana’s medications and I’m no way near where I want to be. The biggest issue is of course Hana’s obesity and ravenous appetite. But I thought I’d share something positive with you today.
Read more on our Brain Tumour journey, our war against Hypothalamic Obesity and my quest to get Oxytocin studied and prescribed as part of every Craniopharyngioma survivor’s medicine regime here in the Brain Tumour category. I also update my Facebook Page daily, so please do get in touch, I love hearing from survivors, parents of survivors and anyone else interested in brain healing.