As in title, mild vent.... Doctor (well Advanced Nurse Practitioner.....) referred me to local hospital as my last TSH was 2.75 (I'm taking 25mg levothyroxine. Bloods done as per forum rules) and I'm still experiencing some horrendous symptoms. Above was the response from the endocrinology department as they cancelled my appointment....
How can you tell someone that they're "unequivocally normal" when they haven't even seen me, haven't requested a repeat bloods to check that my levels are still the same and that wasn't just a fluke and the NHS lab won't test my T3 or T4 because I'm "in range" 🙄
I still have an in progress referral to a different hospital (I requested it as I didn't like the look of the local hospital's endocrinology team), so now I've just got to hope that that one doesn't get cancelled too 🙄
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dizzyarmadillo
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Why doesn't your ANP just increase your dose of Levo. 25mcg is just a starter dose and should be titrated until your symptoms are alleviated and most hypo patients are best when TSH is 1 or below .
I've tried getting him to increase it, but he essentially said he was not going to and that referring me was a compromise. He's the third member of the practice that I've dealt with - the others all brushed me off fairly early and refused to entertain the thought that I was symptomatic at such a low level. Hence why I'm now dealing with the ANP, as he's at least been vaguely helpful...
I still have a pending referral to a different hospital, so hopefully that one will go through 🤷🏻♀️
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
I've tried getting him to increase it, but he essentially said he was not going to and that referring me was a compromise. He's the third member of the practice that I've dealt with - the others all brushed me off fairly early and refused to entertain the thought that I was symptomatic at such a low level. Hence why I'm now dealing with the ANP, as he's at least been vaguely helpful...
I still have a pending referral to a different hospital, so hopefully that one will go through 🤷🏻♀️
dizzy you need to carefully read all the info above that SlowDragon has provided - they are not following guidelines and are frankly incompetent.
I was left on 25 µg of levothyroxine for six months and it made me incredibly ill. Had it not been for this forum I would not be here now and that is no exaggeration.
I have written my bio as a case study of just these sorts of circumstances and I would strongly advise you to read that to understand how important the information is. If you click on my face, it will take you to my profile and that is where my bio resides.
It is such an unsatisfactory situation, but we have to self advocate and push back at this absolute ignorance.
TSH on every single principle is the most unreliable measure of thyroid health. TSH is thyroid stimulating hormone. It is not even made in the thyroid. This is what we would call an indirect measurement why do they use an indirect measurement when they could actually sample the thyroid hormones? I don’t think any medic would be able to logically tell you.
Yes they were rather terrible (though GP seemed fine with my ferritin being on the base of the scale 🙄) - I'm planning to retest those next month. I have been taking Thorne Basic B, plus B12 liquid drops and a vit d/vit k mouth spray. I'm not vegetarian or vegan, though I did cut out dairy just before Christmas. I've been trying to eat pate a couple of times a week, so fingers crossed that will do the trick for my iron.
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Refused liquid Levo by NHS Endo due to cost. 
Help! Local NHS refusing me T3
NHS endo who believed me & listened - at last!
Can you tell me what to write to get an appt to see an endo?
Is it my choice which NHS endo I see?
