battling with virtual gp

[Gbunny]

I’ve been on Levo since 98 after RAI to treat graves. I’ve been very happy on 175mg for years.

Been told that I’m over treated, dropped to 162.5, then to 150 sept 22. Started to feel a Little Woolley and slower than usual. Found that my motivation has changed in that I’m finding it more difficult to do my job (need to be sharp in my profession) having to force myself to go to gym too but otherwise I’m ok. The doc has now told me to drop to 125 mg and is withholding my prescription until phone appointment on Monday. I have never met this woman, just get annoying texts telling me to reduce my dose.

I’m livid ! And going into surgery today to request a full thyroid function test - can anyone tell me what to test for please?

[tattybogle]

Have you had a thyroid blood test yet on 150mcg ?

GP should not have asked you to reduce further until they have seen some test results for 150mcg .

If you HAVE already had a blood test on 150mcg , then you need to get hold of those results.

Quickest way is to go to GP reception and ask for a "printout of your latest thyroid test results" (actual results and reference ranges , not just the 'comment '. )... we can then help you understand why your dose was reduced and what to do about it .

You have legal right to have these results as long as a GP has already seen them , (the receptionist may say they want to check with gp first, in which case say you'll come back another day to collect them) .

Thyroid tests results you need to ask for are :

TSH (Thyroid Stimulating Hormone) eg. 0.98 [0.4-4.5] ...........Will definitely have been done

fT4 (Free T4 / thyroxine) eg. 19.8 [12-22]... may not have been done, especially if TSH result is in range.

fT3 ( Free T3) eg. 5.8 [3.2 -6.8] ............... Unlikely to have been done., (but very useful if it was)

When testing thyroid levels the NHS will only test what the lab lets them do , it doesn't matter what you ask for. TSH is always done . fT4 is sometimes done . fT3 is rarely done

Get hold of your results , preferably before speaking to GP , so we can help you deal with GP better .

[tattybogle in reply to tattybogle]

p.s if they ask 'are these for you ?' , or 'why do you want them ?' ... keep calm and say "they are just for my own records" (They should not really be asking that question , but they sometines do).

[PurpleNails Administrator]

For full - thyroid function test  (TFT) you need TSH, FT4 & FT3.

but when GPs order a TFT to monitor levels often the lab is automatically set up to test TSH first and if in range not test free thyroxine & free triiodothyronine (FT4 & FT3) - the actual thyroid hormone.  

The TSH (thyroid stimulating hormone) is the pituitary hormone which stimulates your thyroid - but it’s not a reliable measurement.  It can appear low for many reasons & doctors assume it means you are “over replaced” but your FT4 & or your FT3 may be low.

Firstly ask for a printout of your results & see on what basis your GP is reducing dose.

Also important to test key nutrients Folate, ferritin, B12 & vitamin D.  If these aren’t optimal levo wont work effectively & convert to FT3.  

If GP can’t test everything there are private option.  

Here’s a list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies (Medichecks advanced thyroid)   Others a basic function only.  (Monitor my health) Some also have discount codes available.

thyroiduk.org/help-and-supp...

You order test online - the kits arrives via post - sample can be taken by finger prick (extra fee for private venous draw). Post back and results available online usually quite quickly.  

[Gbunny in reply to PurpleNails]

thanks for your reply, I’ve just requested a home test from blue horizon, hopefully should have more of an idea and provide me with some ammunition when discussing with GP - going to insist on face to face appointment too !

[PurpleNails Administrator in reply to Gbunny]

Post complete results & labs ranges in a new post once you receive them - members will advise.  

Ideally complete test Monday - or as early in week as possible to avoid weekend delays, also watch out for postal strike delays.

Thyroid test should be taken after fasting overnight (drink lots of water) - time it so it’s taken just before 09.00 & the replacement dose should be delayed until after draw.

Supplements containing biotin need to be left off 3 days before test longer if high dose.  Biotin can interfere with test.

[pennyannie]

Hey there again ;

Can't really add much to what i wrote last time around -

Your NHS doctor is not obliged to accept private blood tests but it may force someone's hand to get you a TH, Free T3 and Free T4 reading and range from the laboratory :

My NHS surgery refused to test my vitamins and minerals but agreed to test a TSH -T3 and T4 if I paid the NHS laboratory direct - which I did - as then I wasn't really aware of these private blood test companies that we seem forced to use if we want the necessary information.

Just go 1 step at a time - try not to stress yourself out with it all - though it's much easier said than done as when in your shoes my Graves symptoms were simply exacerbated by fighting the system and having a ' field day ' and why eventually I decided to ' jump ship ' and DI for Myself.

[SlowDragon Administrator]

having dose levothyroxine reduced inappropriately frequently results in low vitamin levels and instability

Hope you ordered FULL thyroid and vitamin testing from Blue Horizon

Just testing TSH is completely inadequate

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking

Meanwhile refuse to reduce dose further

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 them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo of your weight per day

Some people need higher dose, rare to need much less