So, although my T4/T3 were great my TSH was very low. Against my wishes, my GP lowered my medication.
Re-tested after a month. As expected TSH went up and appeared 'normal'. I was livid because no T4/T3 test had been done so I don't know what they were but on past experience, I'd guess they were on the low side of 'in range'.
I requested a T4/T3 test but was refused. GP said there is no need to test it.
I tested privately a week later. As I predicted, my TSH continued to rise above and out of range and my T4/T3 have plumeted way below.
My question is, can anyone give me an argument to present to the GP to either refer me to an endo or at least test my T4/T3 when TSH is tested? I'm so tired and can't think properly now. I don't have much fight left in me for this.
Based on their past handling of the situation, I don't have much faith that would work. I've asked them to do more research into why my TSH is constantly low while my T3/T4 is normal but they just refuse. I was hoping to go armed with medical views to support more investigation. Not just my 'feeling'. They don't seem to respond to that.
I’m in the same position: TSH around 0.02 and FT3/4 in 40%, 52% range respectively but Gp doesn’t test Frees, and doesn’t understand or care when I tell him. He has just had me on a 6.5 weeks of reduced levo.from 100 to 75mcg ( along with private 15 mcg T3). Unlike you though my TSH rose to 0.03, and private Medichecks test showed FT4 down to 29%…. Surgery receptionist phoned up to say ‘ reduce levo.to 50 mcg’. Meanwhile I had reinstated the 100 mcg as felt bad ( to simplify fibromyalgia aches, stiffness and pain much worse) and written a letter to Gp explaining why I want to go back up. Have for the first time in over 24 years been offered referral to NHS endo as I am refusing to pay for another private consultation, and requested one out of Trust.
I'm fortunate, as my Primary Care doctor does what I ask her when I ask her to order TSH, free T4 and free T3 all in the same test. I just tell her the truth. I tell her that I am part of a Thyroid Board from the UK, and the members of the Thyroid Board strongly recommend testing TSH, free T4 and free T3 at the same time, and would she please order those 3 tests for me. And she does it. I can get that done every year, and if there were some reason why I needed it done more than once in a year, if I had a good reason, she would probably do it. I'm not in the UK. I live in the USA.
That's the difference. You live in the USA. My GP told me the lab won't test T3/4 if the TSH is within range. They say they 'can't' order it. I'm not sure I believe that.
Gerry1969 My surgery tests TSH and T4 every time they test (UK). It's part of the TFTs on the blood test form isn't it? T3 not tested though . TSH on its own is only half the picture surely. I have found the clinical pharmacist a lot more understanding than a GP with regard to considering normal versus optimal figures and any symptoms I'm experiencing are taken into account. I will quote relevant ThyroidUK advice if I need to as back up!
Please can we stay in contact? I'd really like to know more and if you have success. There doesn't seem to be much information on why the (low) TSH is telling the Thyroid to reduce its production of T4 when there's enough. I've been thinking about doing a combo of Levo / Liothyronine.
How did your GP react to you taking the T3 / Liothyronine?
"My question is, can anyone give me an argument to present to the GP to either refer me to an endo or at least test my T4/T3 when TSH is tested?"
"I tested privately a week later. As I predicted, my TSH continued to rise above and out of range and my T4/T3 have plumeted way below."
Gerry1969, doesen't the results of your private testing [TSH rising above and out of range, and T4 and T3 plumeting way below range] provide an excellent argument to present to the GP to refer you to an endocrinologist?
To me, those results provide excellent justification for sending you to an endocrinologist.
I'm in the process of trying to write a letter. If I manage to get an appointment (that's a struggle in itself) I will take it in. When I'm ill, I can't function properly mentally and have trouble explaining myself. I'm hoping I can put enough in the letter along with the results to warrant referral at least.
You are likely to have low vitamin levels now as Ft3 is extremely low
You can refuse to accept dose reduction unless Ft3 is over range
August results
Free T4 (fT4) 17.8 pmol/L (12 - 22) 58.0%
no ft3 or vitamin results
Showed you probably needed dose INCREASE in Levo
Low vitamin levels tend to lower TSH
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Insist on reinstating 100mcg levothyroxine dose daily
Retest in another 8-12 weeks
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. "
In future be ready with this information and show record of your spreadsheet
Many, many members on replacement thyroid hormones have below range TSH
Your experience sounds very familiar 😢, I am so sorry to hear that you are having a rough time.
Around 5 years ago I was in a similar situation, my TSH was very low and the doc only measured TSH and T4 which was around 75% through the range (T3 not measured!). Gave me the spiel TSH needs to come up blah blah, over-replacement, osteoporosis blah blah, and I was badgered to lower my dose by alternating 100mcg and 75 mcg - despite my protest (he wanted to reduce by 25mcg but I refused). Long story short, after a month, I felt absolutely rotten, no energy, weight gain, hair loss, palpitations, anxiety, depression - the whole range. I could not function properly. In my case the TSH did not come up much (was still suppressed) but my T4 dropped significantly. I then did a private test and T4 and T3 were both low, so I told the GP that I could not function on the reduced dose and that I was going up on the higher dose again. And that it is my risk as a patient to take and he as a GP has a duty of care, if I am not getting on with the lower dose and should respect my wishes. If you don't want to be confrontational, you could say that you would like a trial of increasing your dose to see how you feel and that it is your risk to take, not his.
You might find this publication of help, which supports a more individualised treatment of patients:
If required for symptom relief, considering wide variations in individual responses, clinicians may find it acceptable to suppress the TSH close to or slightly below its reference range while avoiding overt clinical or biochemical hyperthyroidism. (meaning T4 and T3 within the range)
Just as a note, your TSH is far too high, most people feel well when the TSH is around 1 or below. And it seems that both your T3 and T4 are now below the reference range, so this definitely warrants an increase in your medication. Just be firm and say that you cannot function properly on this and that the GP has to take into account how you feel. Besides, he really cannot argue much when T3 and T4 are both low and the TSH is high! I really hope that you can get this turned around again. When you can increase your dose again, be aware that it might take a while for you to feel better again, it took me around 4 months to be back to my old self again - so be patient with yourself, you will get there!🙂
Thanks. I've already scraped together some spare Levothyroxine (25's) to increase my dose back to 100 again. I've written a letter along with a spreadsheet with my full results history dating back to 2015 which shows a pattern of consistently low TSH (0.02) and mid range T4, Low range T3. I've basically said that they can't just treat the TSH without knowing what else is going on and that testing all three hormones is imperative. Next hurdle is getting an appointment which isn't easy at my GP
I think that is the right call, you know your body best and if you see (with clear evidence as well) that something is not working, you need to make changes. I hope that you will see an improvement soon.
Is there a chance you could change GP's? Might be an idea, perhaps better to drive a bit further for a different GP that might be more open to patient's wishes? I know it might not always be possible but he sounds like he is a very belligerent sort and not really open to reasoning - never mind about listening to his patients 😢. I hope that things will get better for you.
Gerry1969 Just wondering how is your general health - vitamin levels, D and B12, iron etc.? These all impact on how efficiently the levo is working I find. They need to be optimal ie usually high in range when hypothyroid to help us feel well and easily fall if we're not vigilant.
All okay I had two full blood panels. I did stop taking all supplements between tests to make sure nothing was negatively affecting results. Didn't make any difference.
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TSH low but T4 low?
Low TSH low T3/T4 please help !
Normal TSH but low T4 
