I have autoimmune subclinical hypothyroidism. I am currently taking 50mg Levothyroxine and had bloods done last week after 8 weeks taking 50mg:
Serum TSH level 2.84 mIU/L [0.27 - 4.2]
Serum free T4 level 16.1 pmol/L [11.9 - 21.6]
I have seen some improvements since starting medication but still have persisting symptoms, so I asked my GP surgery via their mandatory online triage for an appointment to discuss trialling a dose increase to try to reduce remaining symptoms and optimise my thyroid levels within the reference range. I am a fairly tall and muscular build, and my weight had been steady at around 80-82kg before thyroid issues- my weight now sitting around 100kg.
Today I had a conversation with a nurse practitioner (who said she had discussed my case with a duty doctor before calling me) to tell me the following decision from the practice:
Because my results are within the normal range, the practice cannot increase my dose. They saw that I had referred to the NICE guidelines but said they are “not allowed” to do as I have asked and increase dose unless the patient’s results are outside the reference range. Because I have referenced the guidelines, the surgery is going to send out a referral to an endo to ask for advice to the GP (not a referral for me to see the endo).
The nurse practitioner obviously has limits around what they can prescribe, and I will wait and see what comes back from this advisory referral to the endo, but the nurse’s brief was clearly to manage my expectations that I won’t be getting any dose changes unless the TSH number jumps back outside the reference range again, irrespective of whether I feel well or not.
I’ve updated my bio with other background info.
Has anyone else been told that they have to have results that are completely out of the reference range for a dose change to be considered?
If so, has anyone successfully challenged their surgery’s position? How did you tackle it? Any tips on what worked?
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CyclingMummy
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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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
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).
The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.
If they still won’t increase dose
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
I would love to *see* a GP! Our surgery has moved to online triage, phone consults and video calls. I’m not sure what qualifies a person to actually see a GP face to face any more.
On my thyroid diagnosis journey so far, I have only spoken once to a GP. I had a phone consult at which the initial bloods were ordered. Results came back out of range so was told by text message they would retest. Second test results came back over range, and they said “no action” by text message. I went into the triage system and asked them to review that decision. I got a phone call from a GP who agreed to start me on Levo. Since then I haven’t spoken to a GP at all. All “reviews” have been a text message with no input from me. It’s so disheartening. I had a phone call where I had to argue with a pharmacist, who went away to talk to a doctor and sent me a text message to say they would agree to increase my dose from 25mg to 50mg. Then I’ve had the latest round of tests dismissed by text message, followed by today’s phone call from the nurse practitioner when I asked to speak to a GP. I don’t merit an appointment slot with a GP, according to my practice’s triage protocols….
I would contemplate a change of surgery but from what I hear, other practices near us are much the same.
mine have recently moved to that kind of triage too , ie "we will decide if you need to see/ speak to a doctor , it's nothing to do with what you think you need "
I haven't had the need to use it yet ......
This may work ..... If you were to let them know (by whatever means) that due to your ongoing symptoms and their refusal to engage in trialling a reasonable dose adjustment as per nice and other guidelines , you are intending to trial an increased dose by sourcing extra levo without prescription from the internet ....... i think you will find this results in a very prompt call back from a GP... (albeit an angry one).
or you could always force the issue ...i did this years ago when i started on levo (however it was easier back then because they gave us 3 months of tablets at once back then , so i had enough spare to try it , (you could tell them you left/lost a packet on holiday and need more to replace them etc unfortunately they will be suspicious of this as they now know you are after an increase ) .....anyway once you've got enough levo ( from wherever, by hook or by crook ) just increase dose yourself for 6 wks without informing them , then get them to do a blood test because you "have been taking increased dose of 'X'mcg for 6 wks and feel some improvement , but want to know what your levels are like"
(they will pretty much be forced to test you if you say that , even if an annual retest isn't due) ...and assuming your TSH is still comfortably within range and fT4 is not over range ,, they then don't have any grounds to ask you reduce dose... and so they are more likely to OK the increase and prescribe whatever dose have been taking.
This worked for me , although i may just have been 'lucky' as my TSH was 2.9 on 50mcg .. then rather oddly it was still 2.5 on 100mcg , then even more oddly it was 2.7 on 150mcg (and fT4 was always in range) ... my TSH did drop to 0.01 about a year later when i tried an increase to 175 ish .. and then i got told off by letter and instructed to "take no more than 150mcg".
i don't know what i was doing and didn't know my results at the time ... but with hindsight , my TSH staying within range is why they agreed to prescribe more each time without argument .
i haven't hit this problem with my GP's , but if i did (and if my TSH was over 2.5) i would use these below to support my argument /apply some more pressure to GP .
along the lines of
"what harm would trying a small increase do as long as TSH / fT4 remains within range ?... we don't know how low my TSH would go with a 25mcg increase unless we try it . If we try it for a few months and it's too much we can always titrate down again with no harm done , but if we try it and i feel improved and TSH remains within range , then what is the harm ?"
( i'd keep the argument to 'keeping TSH within range' not because i agree that it mustbe kept within range , i don't , but sometimes it's useful to talk to them in language they understand .. and some of them only think in terms of TSH)
Yes I had this problem and it didn't matter what NICE guidance I quoted, the GP wasn't budging. I saw 3 different GPs, they were all the same and this seriously impeded my recovery as I was sat on the same dose for 6 months. I didn't have any more fight in me, so I went to a private Thyroid specialist, got a dose increase and then the NHS GP agreed to prescribe it going forward. It's a stupid game that I'm sick of.
Thank you for taking the time to reply. I have asked for the list of private doctors, and will see what my work healthcare will cover. If I get nowhere after this “referral”, my Christmas gift to myself might have to be the excess payment on my private healthcare to try to find a doctor who will at least think about whether treatment should be adjusted!
'You are in range, (at the very top of the range - TSH 4.87) rejoice and go away' was the basis of what my inept GP donkey, Dr Buffoon, told me. What foolishness is this?
Had I followed his advice, I have no doubt I'd be dead by now or in a wheelchair.
Posting just to let you know that many, many GPs have not a clue when it comes to hypothyroid issues. The real horror stories lie with seeing inept endos, who are all too often diabetes specialists. That doesn't stop them from talking out of their @rses and leaving us tired out, overweight and under medicated. Fight, fight, fight xx
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Trying to make sense of my blood test results
hello can anyone advise
Thyroid levels ‘in normal range’, no dose increase 
Please help
Trouble collecting blood and how are my readings?
