Hello 👋
Here is my personal update for those who are interested, following on from previous one here… healthunlocked.com/thyroidu...
After seeing the NHS endocrinologist / gift from God who obligingly prescribed me HC at my request and told me where I could self-source my T3 it has been quite a rocky journey…
Understanding that I probably need 20mg HC as a minimum I was struggling to get my HC above 5mg. I tried several times, but each attempt was met with insomnia (lying prostrate in bed until the sun came up kind of insomnia) hard core dissociation and anxiety. So, making suspicious peace with 5mg HC I added in 50mcg of levo and 5mcg T3. A few days in I noted some shakiness, hypoglycemia crept back in and I had some very uncomfortable nausea with dry heaving. For me, nausea is a key sign of low cortisol and is a common symptom of adrenal crisis, so I intuitively increased my HC to 10mg. I continued to raise both thyroid hormone and adrenal support together and have now found myself at a place of: 22.5mg HC, 100mcg T4, 15mcg T3.
A key nugget I have learned is that adrenals and thyroid must be raised and supported together. Often we get stuck in a metabolic stalemate where thyroid hormones can’t be raised because we have such low cortisol, but cortisol is also bound to make us feel a little odd without the presence of enough thyroid hormone. They are true metabolic partners ⚖️ and respecting their partnership has gone a long way towards me understanding how to raise my medications.
I must admit I have never known myself quite so mentally unsteady. I have had some days/hours of genuine clarity, peace and good mood. It’s hard to put into words what “good mood” means for me. I have had severe, chronic, “treatment-resistant” depression and anxiety every single day for the past 19 years… so having some days of joy has been so promising I actually daren’t type it out.
I have also had some very dark, difficult moments too. I reached 15mg HC with 100 t4 and 10t3 when I realized my period was 2 weeks late, I haven’t been able to leave the sofa much and my long-suffering partner gently suggested that I’d been very “feisty” lately… so I increased my HC to 20mg and my period arrived 24 hours later! I must say I really enjoy that level of feedback from my system.
Previous attempts to introduce T3 with T4 always ended in severe suicidal ideation, palpitations, intolerable tinnitus, nausea, sweating and all the other horrible signs of low cortisol, so I am incredibly hopeful that I can officially say I can now tolerate T3 🎉
My intention is to reach 100t4, 30t3 + whatever HC I seem to need with it and then do my first set of bloods since I stripped everything back. I think I will get away with avoiding fludrocortisone for now as my BP seems stable and my sodium has risen 5 points, potassium is also in a good place. Once I get to a stable dose of HC and thyroid hormone I will do DATS.
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HRV: increased to 68 with random spikes into the hundreds!
RHR: 67 Thumping heart has stopped - I am so happy about this one, I can lie in bed at night without my heart pounding my mattress like it wants to escape!
BP: normalized & PoTs symptoms are significantly improved 🙂
Weight: No weight loss to report, and in fact I have what I assume is a cortisol band of fat around my middle appearing 🙈😭 just trying to trust the process…
Tinnitus is improving, but spiking at times to worse than baseline but only for short periods
Appetite: Difficult. Finding it hard to stomach anything that isn’t a beige comfort food, HC is not on good terms with the gut.
Fatigue: Remains much the same.
Mood: Weird. Definitely more prickly than normal, but at other times I have little periods of warm joy I’ve not felt since I was a child.
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Unconditional love to all those blighted by this hideous disease,
Relentless x