What are you supposed to do......

[Jingley]

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.

[Obsdian]

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.

[Jingley in reply to Obsdian]

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.

[Obsdian in reply to Jingley]

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.

[Lottyplum in reply to Obsdian]

I used Monitor.my Health for private TSH, T4+T3 bloods. As it's an NHS lab my GP surgery accept them.

[SlowDragon Administrator]

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 them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

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).

What are your private results

[Jingley in reply to SlowDragon]

Thanks SlowDragon . Problem is I'm trying to get my Levothyroxine reinstated back to 100mcg rather than not reduced.

Private results from previous post are

TSH. 0.558 (0.27-4.2)

FT4. 17.1 (12-22)

FT3. 4.4 (3.1-6.8)

Think I'm going to have to resort to quoting guidelines at him.

[SlowDragon Administrator in reply to Jingley]

Free T4 (fT4) 17.1 pmol/L (12 - 22) 51.0%

Free T3 (fT3) 4.4 pmol/L (3.1 - 6.8) 35.1%

Obviously need dose increase

How much levothyroxine are you now taking

What were results on 100mcg daily

Which brand levothyroxine

You need vitamin D, folate, ferritin and B12 tested

Politely insist GP test

[Jingley in reply to SlowDragon]

Now taking alternate 75 and 100Results on 100 per day were

TSH 0.07 (0.3 - 5.0) the majority of the time although had 0.13 and 0.01 on occasion

T4 usually 20.0 (11.0-22.0) with the odd 19.5 and 20.4 thrown in

Never had T3 tested by gp.

Taking Accord 100 and Teva 75

Will ask GP for full vitamins and also full iron panel as ferritin has been low in previous NHS tests.

[SlowDragon Administrator in reply to Jingley]

So first step get vitamin levels tested

Yes ESSENTIAL to maintain at optimal levels

Ferritin at least over 70 and nearer 100 may be better

Vitamin D at least over 80nmol and many find it best to maintain 100-125nmol

Serum B12 at least over 500

Folate at top of range

Exactly what vitamin supplements are you currently taking

Thyroid

Teva brand upsets many, many people

Unless you are on dairy free diet and know you are lactose intolerant

Recommend/suggest you get 75mcg Teva changed for Accord 50mcg tablets

Take 1 and half x 50mcg tablets per day - cutting a 50mcg in half to get 25mcg

Retest thyroid levels 6-8 weeks after changing brand

Then assuming results still low …..push to increase to 100mcg 5 days a week and 75mcg 2 days

Also request Cholesterol level tested

High cholesterol suggests Levo dose is inadequate

[SlowDragon Administrator in reply to Jingley]

TSH 0.07 (0.3 - 5.0) the majority of the time although had 0.13 and 0.01 on occasion

T4 usually 20.0 (11.0-22.0) with the odd 19.5 and 20.4 thrown in

Never had T3 tested by gp.

Obviously without Ft3 test means little, but highly likely dose was absolutely fine

[Jingley in reply to SlowDragon]

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.

Will get this done if it kills me........

[tattybogle]

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 :

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

... 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).

[Jingley in reply to tattybogle]

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 🤫

[tattybogle in reply to Jingley]

[serenfach]

You could also point out that most blood tests for the NHS are now done by private clinics.

[McPammy]

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.

[Brightness14]

I just treat myself and have done for years. Still visiting the GP for a prescription and then no filling it out, easy. No thyroid either.