hi all, after an extremely disappointing call with the doctor today I was hoping for some advice.
I’ve been on Levo for almost a year. 100mcg for the last 6 months. My blood test in October showed TSH just under 1. Tests a couple of weeks ago 4.71. The whole reason I went for another test and appt was because I know my level isn’t right. All my symptoms are back. Basically the GP has refused any increase because I’m in range. I tried to point out that yes in range but not for someone on levothyroxine. She wouldn’t listen and basically patronised me after calling me a horrible patient. I now have another doctor calling me tomorrow but as the one I spoke to today is the managing doctor at the practice I’m not holding out much hope. Results attached.
What would you do/say?
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Spenny1
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When I had a GP who wouldn’t listen even though she was not a thyroid expert, I called my Endocrinologist’s secretary and asked if I could do my blood tests at the hospital in future because she wanted to reduce the meds as prescribed by him. He agreed and I bypassed the GP with regards my Thyroid. It may be worth a try. We know how we feel and most people with thyroid issues keep themselves well informed. Or come here for advice. Doctors are there to help you, Tomorrow I would ask the doctor to refer to to you your Endo or, if you don’t have one, insist on a referral to an Endocrinologist asap. Good Luck!
Yes, of course it does. So does T3. If you reduce the TSH, as all forms of thyroid hormone replacement do, the thyroid stops working because it cannot work without the stimulus of TSH : Thyroid Stimulating Hormone. But, that is not in any way a problem.
Who said full replacement was 200 a day? You need what you need, not what some doctor thinks you ought to need. And, often, people that need 200 mcg to feel well are poor converters, and actually need T3 added to a reduced dose of levo.
I hunted through the internet and found the 200 figure somewhere. Probably Mayo Clinic. My suspicion is that I don't convert. I was trying to find how much T3 would be required for full replacement.
I had a cyst on my thyroid gland drained many years ago, which was the start of this. -or maybe it just highlighted it.
I originally asked my UK GP whether she would prescribe T3 for me, and she replied 'what is that?' then 'we only prescribe levothyroxine and we never refer'.
So I am just winging it. I have sourced some natural replacement and some T3, which seem to work, although my lack of energy is a great bother.
I am 82 and I have been struggling with all the changes in formulas, the addition of mannitol, the take overs and so on for years.
I have AD(H)D so I struggle with all your figures and test results. I do better picturing the pituatry gland closing down TSH as no longer needed, although it doesn't seem entirely logical. I suppose that implies that the thyroid gland asks for a supply as needed, and it stops asking? That doesn't make sense either!
I was trying to find how much T3 would be required for full replacement.
Nah, that's not how it works. With hormones, all hormones, you need to start on a low dose and work up slowly until your symptoms resolve.
With levo that means starting on 25 mcg or 50 mcg, depending on your age, and increasing by not more than 25 mcg every six weeks.
With T3 that means starting on 5 mcg and increasing by not more than 5 mcg every two weeks, or longer.
Increasing any faster is counter-productive. And if you tried to start on a dose high enough to be considered full replacement, you'd probably blow the top of your head off! It would make you very ill, anyway.
My suspicion is that I don't convert.
That's very likely. But to know how well you convert, you need to have your FT3 and FT4 tested at the same time and compare them. Don't worry about the numbers, just post results and ranges on here and we'll sort it out for you.
I originally asked my UK GP whether she would prescribe T3 for me, and she replied 'what is that?'
🤣🤣🤣 Typical!
I got much the same reaction from a doctor once. He said 'that's something to do with hyperthyroidism, isn't it?' They just don't learn about it in med school. And most doctors, if they're honest, will admit they don't know what it is. The level of ignorance is shocking!
I have sourced some natural replacement and some T3, which seem to work, although my lack of energy is a great bother.
What have you bought? You can't mention where you bought it on the open forum, but you can tell us what it's called and what's in it. Because not all so-called thyroid hormone replacement is bona fide.
I do better picturing the pituatry gland closing down TSH as no longer needed, although it doesn't seem entirely logical. I suppose that implies that the thyroid gland asks for a supply as needed, and it stops asking? That doesn't make sense either!
The pituitary, a gland in your head, makes TSH - Thyroid Stimulating Hormone - when it senses that there's not enough T4/T3 in your blood. (Although it cannot distinguish between them.)
The low the level of thyroid hormones, the more TSH it makes. When (if) the thyroid responds, and thyroid hormone levels rise, the pituitary gradually reduces the amount of TSH it puts out.
So, in primary hypothyroidism, we have low FT4/3 and high TSH.
In hyperthyroidism, we have high FT4/3 and zero TSH.
It doesn't always close it down permanently, though. Sometimes, if levels drop seriously again, the TSH will rise again.
But, the thyroid doesn't ask for it. The thyroid needs the stimulation if gives, but it is not an ingredient in thyroid hormone. It's just like a riding crop that gives the gland a poke from time to time to say come on, giddy up!
Hope that explanation is not too confusing. Do ask questions if it is.
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Approximately how much do you weigh in kilo
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, 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
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.
That's extremely unprofessional, unless you were rude or abusive and I'm sure you weren't, then she's in the wrong, not only regarding your thyroid status, which is clearly sub optimal, but also in her attitude.
I'm guessing she doesnt like being challenged by a well informed patient. If you have access to a printer then print off the links Slow Dragon has provided and hand them in. I would also consider making a complaint to the practice manager about your treatment. And give the practice manager a copy of the treatment guidelines.
Clearly this doctor hasnt kept up with professional development and needs educating.
This is not just 17 years behind for up to date thyroid research - 15-17 years is the approx date they are behind on ALL latest scientific research! At that’s if you are lucky and they have been a student doctor relatively recently !!
More like they are stuck in the Dark Ages, actually scrap that, at least doctors in the past relied on signs and symptoms, nowadays doctors just read out blood tests results, like a teleprompter. If you're somewhere in range then off you trot.
I was definitely challenging her but not rude. I did match her tone after being called a horrible patient.
Test was just before 8.30am, no food or drink or Levo.
My vitamin levels were very low last year but these are now hugely improved. They were also tested.
I have another doctor from the practice calling me today but I am sure she will have lined him up to tell me the same as she is the managing / lead doctor at the practice.
I do have my complaint letter ready to be sent today. I’ve also booked another appointment with an endocrinologist but that isn’t until the end of April.
Thank you all again and for the resources of information. I really appreciate it.
You could say to the doctor today that you’re wondering what to do. You know from all the best practice guidance to GPs that you need a dose increase based on your TSH. However yesterday instead of being given an increase and treated with respect you were called a ‘horrible patient’.
You are under medicated with those results. If I was you I’d do a private blood test TSH, T4 and T3. Get the full picture. Your GP is wrong. Your TSH shouldn’t be above 2.5 or you’ll feel symptoms. My private Endo explained that to me. You might need more levothyroxine but best check your conversion from T4 to T3 also. You may need some T3 medication added also. You won’t know until all 3 are tested.
Hold on to your own experience, it’s your bod and you know it best. . My consultant has finally agreed that TSH not an indicator for me & written to GP to tell him not to change my meds. It’s not right yet but I have been in this journey for a very long time. At the moment my prolactin levels are high and he thinks this may be why my thyroid isn’t working properly - I vaguely understand what he said - I have been prescribed cabergoline once a week & to go back in 8 weeks, I am in week 2 & am sleeping better & have a little more energy.
I researched & then sent that to GP & Consultant - Hold your ground & good luck x
I showed the NICE guidelines to my GP when he wouldn't increase my dose from 75mcg and I still had symptoms. I illustrated that I should be on about 100 - 125 Levo according to my weight (i.e. as in Slow Dragon's message). He was very receptive, said he didn't know this and would show other GPs this info and then he increased my dose!!! Also, I seem to remember on the information pack inside my first Levo pack I had it mentioned increases in increments until roughly in line with your weight. Good luck with talking to other GP today.
Levothyroxine is 2nd most prescribed medication, with 2 million people on levothyroxine, yet many GP’s don’t know basic guidelines on dose and how to read results
A different doctor has just called and he agreed that on medication my TSH should not be at the top of the range and has added 25mcg to my current 100mcg prescription. Test again in 6 weeks and take it from there.
I feel vindicated and glad I knew what I was talking about.
Thank you all again for the information and resources, much appreciated!
Well done, thank goodness you stood up for yourself and found this forum. I feel genuinely sorry for this doctor's other thyroid patients who will undoubtedly be undermedicated and feeling rough.
She'll be telling them their blood tests are ok ( even when they aren't) and the poor sods will be none the wiser. There are still an awful lot of people who think doctor knows best and defer to them.
Not on this forum though 😆. There's no deference here.
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