GP reduces Levo to get TSH within range.Patient returns to GP with hypo symptoms again.
Patient explains that they feel best when T4 (which always gets tested if TSH below range) is nearing top of range.
Patient shows GP private results showing T4 roughly mid-range.
GP says they cannot accept private results.
GP orders bloods to include TSH and T4.
Results back from lab ........ T4 not tested
Aaaarrrrgggggghhhhhh!!!!!!!!
😠😠😠
I know this is a normal scenario but it's so bloody frustrating that a lab overrides a GP's instructions leaving patients to have to battle to regain their health.
If anyone would like to join my rant, feel free.
Written by
Jingley
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Was told exactly this today after trying to argue yesterday to get t4 tested. I was told it does not matter if the GP requests it, it is upto the lab and they do it only when tsh is high.
I have signed up to get it done myself. I have been assured the GP will accept the results... Still kind of worried what is ahead after that and how much they will change my dose.
Problem is that when I first started on this journey the GP overseeing my care was also hypo. She was more interested in symptoms, or lack of, and was happy keep increasing my dose until I felt ok. She was happy with below range TSH as long as either my T4 didn't go over range or I showed symptoms of being over medicated.She's since left the surgery and I now have a GP who wants to keep my TSH in range even though this reduces my free T4 and gives symptoms.
My GP is aware that T4 matters but has to go based on the information she has... That being only the tsh. Symptoms don't seem to factor in despite she believes me.
Refuse to reduce dose unless FULL thyroid, TSH, Ft4 and Ft3 tested
Plus you need to test vitamin D, folate, ferritin and B12 at least annually
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
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).
I agree. I was totally happy and stable on the higher dose.Problems only started on lower dose which is why I'm determined to get the 100mcg per day reinstated.
GP is frightened of taking responsibility / professional flak for allowing a slightly below range TSH .
So ...... put the prospect of something more scary under their nose instead ,.. you may find they are miraculously prepared to allow a slightly under range TSH if it means you will go away quietly and stop making difficult suggestions.
Try reasoned argument first ....... how low was TSH when on dose you preferred ? if it was 0.04 or over you can use this :
... some of the evidence in there comes from the same paper that was used to make the current N.I.C.E (NHS) thyroid guidelines.. so they can't really dismiss it.
If no joy ..... make a suggestion that will cost them a lot of money ...... start making noises about wanting to be "referred to an NHS endocrinologist with a view to a trial of T3 to see if resolves your residual hypothyroid symptoms" ... if this were allowed , the cost of the T3 would initially come from the endo budget ,,, but if trial was deemed successful then the endo would move the (quite significant !) costs of ongoing repeat T3 prescriptions to the GP surgery .....the management at GP surgery really won't want to fund another patient on T3.
if still no joy ... you could always try your hand at coersion ..... you know you could find a safe source to buy extra levo by getting a private prescription ,or from a reputable source without prescription just by asking on here for recommendations and checking for feedback on any suggested sources with an admin ... but the GP doesn't know you have this relatively easy / safe option ... and the idea of patients buying prescription medications on line will terrify them .... so just inform them you feel so incapacitated on a lower dose that they are leaving you with no other choice than to buy your own Levo to restore your quality of life/ ability to work etc ...... they will be very scared of you buying 'lord knows what from a man in a layby'... (especially if it's on your records that they refused to increase dose without even testing fT4 to prove overmedication).
I'm certainly not averse to "coercion" (lovely way of putting it!)Will happily tell GP that if my Levothyroxine is not reinstated to previous levels I will need to see Endo for possible T3 alongside referrals for:
Bowel issues
Weight issues
Heart issues
Circulation issues
Mental Health issues
Peripheral neuropathy issues
Dermatology
(Anything I've missed????)
I also have no problem whatsoever telling GP I will self-source meds if needs be. They don't have to know that I'm building up a nice little stash of 100mcg as their system allows me to order much more than I'm currently taking 🤫
Your GP has probably advised a too big a reduction?? They usually drop or increase by 25mcg as that’s one of the smallest tablet sizes. Maybe drop by 12.5mcg rather than 25mcg. Obviously that’s if they says 25mcg I’m not sure what was advised. Or request liquid levothyroxine then you can drop by the smallest of margins. Ask for a liquid trial at the very least.
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