"Sick and tired of being left sick and tired due to poor treatment!"
About: GPs in the Perth Electoral District GPs in the Perth Electoral District 6000
Posted by Sick and Tired (as ),
I was first diagnosed with Hypothyroidism in 2012 after doing everything I could to lose weight with little success. I dutifully took the Thyroxine script that my doctor gave me for the next 18 months (increasing my dosage every 3-6 months) with only a few changes to my symptoms.
In mid 2014, I took a 10 week leave of absence from work to travel. What should have been a rejuvenating holiday felt like hard work and I ended up spending at least one day out of every 3 weeks in bed all day recovering. While I was travelling I thought "there must be a better life than this" and so I started researching.
That research led me to the amazing patient driven thyroid disorder websites and communities. Stop the Thyroid Madness (STTM) was my first "big find" and I had so many "aha moments" I wished I'd had my doctor right there in front of me.
Next was Thyroid Change and the For Thyroid Patient Only groups.
Armed with my new knowledge, I went to my doctor who I respected and asked her if we could look at changing my treatment. I cried in her office. I was sick and tired of being sick and tired.
Instead of listening to me and asking me about what I'd been reading, she told me she didn't think it was my Thyroid that was the issue and I felt accused of chasing a certain medication. She gave me a referral for a slew of blood tests I felt I didn't need (Epstein Barr, Lyme disease etc - they all came back negative) and sent me on my way.
I never went back. I went off the Thyroxine and felt better within days. It felt like I had been poisoning my body and now I'd stopped. It took me a while to find an integrative doctor who would let me try own suggestions, Natural Desiccated Thyroid extract (pig thyroid). Prior to finding this doctor my health suffered while I remained untreated. Not long before I started NDT the new medication I spent an entire week at home barely able to get out of bed.
My new doctor reluctantly prescribed me NDT but only the lowest dose possible. I followed the dosing according to STTM and felt amazing within 4-6 weeks. My Thyroid results came back fantastic.
It should not be this hard, I should not have to go through years of living a life at 50% when I could be living a normal life. I am so over the medical fraternity ignoring me.
I've even heard of doctors being told off by Medicare or the medical association for prescribing NDT or ordering the required tests, even though the doctor can prove the patient is getting better.
If we start to share our stories maybe somebody will listen.
Doctors need to rethink.
When a patient who is on T4-only meds complains of other symptoms (depression, aches and pains, rising cholesterol, rising blood pressure, hair loss, etc), I would like it understood that those symptoms CAN be from an inferior treatment, and from continuing hypothyroid, no matter how “normal” the TSH lab result is.
I believe that there always has been, and still is, a treatment that does do the job: natural desiccated thyroid hormones, which has been around for over a 100 years, is certified by the United States Pharmacopeia (USP), is industry regulated by the FDA, and gives us back the same hormones that our own thyroid would have been giving us.
I feel the TSH and its range is a flawed and lousy tool when used solely to determine an effective dose. It can leave a patient undiagnosed for years, or untreated. The TSH range does not equate to how a patient feels or clinical presentation.
My understanding is that Desiccated thyroid is NOT dangerous for the vast majority of thyroid patients, nor is it unregulated, inconsistent, unreliable, or outdated. My research has shown that Desiccated Thyroid has had fewer FDA citations for potency and quality problems than T4-only medications.
It seems to me that Desiccated thyroid gives patients exactly what their own thyroids would be giving them—T4, T3, T2, T1 and calcitonin. I think providing the majority of patients with only ONE of the above hormones is an inferior treatment, and always has been.
In my opinion a doctor can’t know everything. A patient can have self-wisdom and self-knowledge via their own intuition, living in their own bodies, and doing their own research, and doctors can learn from their patients! In fact, doctors are wise to see patients as active participants in their healthcare decisions.
I feel that to continue to treat a patient with inadequate medications and a unreliable TSH simply because long term studies are lacking in the exact answer, or because information is not peer reviewed, or because desiccated thyroid and other methods of dosing are not accepted as a medical standard of practice only serves to fail the patient and to fail the oath to do no harm.