I suggest that you download and print off this article by Dr. Toth. Read and see how it compares to your experience.
You might want to give a copy to the person who is insisting on following guidelines to treat you, but you are still quite ill. Maybe if hundreds of copies were appearing across the treatment world, some doctors might wake up and compare "First do no harm" to how well their patients are feeling.
Hello there Vocal
I presented this paper to both my doctor and endocrinologist but it didn't help me and in fact, I felt even more ostracized. I was refused a trial of T3 because of my suppressed TSH and discharged back out into primary care to a doctor who refers to me as a conundrum.
I believe over the years Professor Toft has changed his mind several times on how to treat thyroid disorders, but appears to have a very credible career history. I think this article was published as he was retiring from his position in endocrinology within the NHS.
I don't know what his end game was by publishing this article and wonder if he achieved his aims.
I'm with Graves Disease post RAI thyroid ablation in 2005 and am now self medicating, buying my own thyroid hormones and getting my life back on my own.
I've been thinking a lot about this question of what he is playing at.
My reading of this paper in relation to his older work is that he's saying: When we wrote all these guidelines in the first place, cruelly treating thyroid patients, depriving them of T3 and enforcing high TSHs, we never intended them to be literally followed to the letter. We expected doctors to use their own 'common sense' and to make exceptions whenever it was necessary (although of course we never mentioned this in our writing).
Since reading this paper when it came out I've noticed a similar sentiment expressed in a lot of places, I think it might be a common psychological gambit. I don't want to get to political, but maybe to put it in vague terms, I've noticed political commentators when advocating harsh policies that will surely hurt people then saying in more informal settings: yes, but we don't intend anyone to actually get hurt, at the moment of enforcing these policies the practitioners will use 'common sense' and make exceptions when it is necessary. Often they don't say it as specifically as that, that exceptions will be made, but that things won't be as harsh as they sound on paper when it's done in practice.
Which in political settings is certainly delusional, and it was in Toft's case, too. As we know doctors risk harsh penalties if they don't follow the guidelines. I think doctors are so constrained that their own common sense has been squeezed out of them, and of course that started to happen during Toft's watch!
I wouldn't give a copy to my GP, due to his statement: "We can prescribe a combination of LT4 and liothyronine, ensuring that serum TSH is normal." -- the problem pennyannie ran up against.
I take a combination of Levothyroxine and Thiroyd, and have had tests sprung on me, too soon after my dose, but have cut back, now to about 130 mcg T4 and 4 mcg T3 before my next test. My bowel motility and body temperature have decreased noticeably after a washout period of about a fortnight, so I'll try and adjust my dose back up halfway and already have a test booked in six months' time. My dose cut in January resulted in a shivery six months, yet my free T3 had increased. Room temperature is fairly constant, though I'm more aware of draughts in the winter.
Hey there,
Yes my suppressed TSH whilst on T4 was the stumbling block for me, but I did have results on a lower dose of T4 that made me ill, but weren't suppressed.
It's all a load of old hogwash, isn't it - reading your post the adjustments they have made to your dose haven't actually improved your health, they kept the control and power and you have simply been a tick box exercise so you look ok on a piece of paper.
I'm happier being my own doctor, it is less stressful and I am feeling better not constrained by blood tests that never seemed to reflect anything as to how I was feeling.
My GP was happy when my TSH had dropped to 4.5 when I first started treatment and was aghast at me wanting to get it below 1.0. It was quite stable at 0.45 for a while and then a flare caused arm weakness so I cut my dose and had most of a year slowly increasing and surpassing what I'd been on, with TSH stuck at 2.0~3.0. It then suddenly dropped and I continued for a few months, feeling no different, until I wangled a free T3 test. As my fT4/fT3 was over 4.5, I discussed adding Thiroyd with my GP, as a source of T3. The healthcare assistant drawing my blood at the surgery wouldn't allow fT3 tests without a GP request (which is always forgotten, even for a standard test), so I went six months before having it done at a hospital appointment, and again, six months later. Both tests were five hours after my dose, with fT3 a bit over range, and higher on the second test (perhaps due to the summer temperature), despite cutting my dose. I've kept the T4:T3 dosing ratio at least 10:1 to look "sensible", and have been entirely responsible for choosing what I take. The recent cut in dose has meant an increase in Levothyroxine, due to reducing the Thiroyd's contribution of T4 from cutting the T3. My GP accepted my explanation and said that as the 25 mcg tablets were already on my list of prescriptions, they would go through automatically when requested. My cholesterol and triglyceride tests have normalized, which I hope haven't gone unnoticed.
Sounds like you have become your own doctor - needs must - take good care -
I saw Dr Toft privately four years ago. He was adamant that it was too complicated to take T3. I kept asking him why but he just brushed me off. I eventually sourced my own T3.
He wrote a very sarcastic letter to my GP saying I had gone on holiday to but T3. I was furious because I had bought it on line so was furious at his presumption.
He eventually agreed that I was much improved after self medicating and offered me a private prescription costing £100 a month. I took him up onnit for a few months but decided to buy my own. I haven’t seen him for a year but am considering making another appointment with him. Not sure it’s worth it at £250 a visit but I am thinking about it.
He certainly changes his thoughts on T3 treatment.
But like most of you I am self medicating and generally feel better on T4/T3 combo.
Dr Toft has also been a coauthor in this downloadable paper:
Time for a reassessment of the treatment of hypothyroidism
April 2019 BMC Endocrine Disorders 19(1)
DOI: 10.1186/s12902-019-0365-4
John Edward M Midgley, Anthony D Toft, Rolf Larisch, Rudolf Hoermann
I like this in the abstract: "Studies relating TSH andthyroid hormone concentrations to adverse effects such as osteoporosis and atrial fibrillation invite similar caveats, as measuring TSH within the euthyroid range cannot substitute for FT4 and FT3 concentrations in the risk assessment."
And in the full text:
"Rather TSH by itself, unaccompanied by measurements of FT4 and FT3, is an unsuitable risk measure in LT4-treated patients, displaying considerable inherent uncertainty in an individual about the risk - benefit ratio for TSH values close to the lower reference limit [27, 69]."
Following footnoted references I came upon this one: ncbi.nlm.nih.gov/pmc/articl...
Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy
"Background: Some investigators reported that among athyreotic patients on levothyroxine (LT4) monotherapy following total thyroidectomy, the patients with normal serum thyrotropin (TSH) levels had mildly low serum free triiodothyronine (fT3) levels, whereas the patients with mildly suppressed serum TSH levels had normal serum fT3 levels, and the patients with strongly suppressed serum TSH had elevated serum fT3 levels. The objective of the present study was to clarify which of these three patient groups is closer to their preoperative euthyroid condition.
The postoperative serum low-density lipoprotein cholesterol levels were significantly increased (p < 0.05), and the serum tartrate-resistant acid phosphatase-5b levels were significantly decreased (p < 0.05) in the patients with normal TSH (0.3 < TSH ≤5 μIU/mL). In the patients with mildly suppressed TSH (0.03 < TSH ≤0.3 μIU/mL) and fT3 levels equivalent to their preoperative levels, all metabolic markers remained equivalent to their preoperative levels.
Conclusions: The serum biochemical markers of thyroid function in patients on LT4 following total thyroidectomy suggest that the patients with mildly suppressed TSH levels were closest to euthyroid, whereas those with normal TSH levels were mildly hypothyroid and those with strongly suppressed TSH levels were mildly hyperthyroid."
I'm close. My last TSH measurement was 0.02 μIU/mL and my LDL had gone down to 109 (<=100 mg/dL). All my biometric markers have gone in the right direction since T3 started.
Finally being treated for Hypothyroidism. 
If you are Hashi's can I ask what dose you are on?
Professional Negligence - if refusing to test T3?
Are you on NDT and having trouble obtaining it?
