Advice on TSH please

[Jillymo]

My TSH is low 0.04 The practice nurse said i was being under medicated. 8/2/16

When i rang my Gp for confirmation of my abnormal result he told me i am being over medicated ! He has now cut my thyroxine from 150 mcg to 125 mcg without consulting my endocrinologist. ( this has been decided on just a TSH done at the surgery )

My endo in Oxford does a series of tests, TSH, FT4, FT3

My last result from Oxford ( told normal ) were taken 12/1/16

TSH 0.01 mU/L Lab range 0.30 - 4.20

Free thyroxine 21.2 pmol/L 9.0 - 19.0

Free T3 7 pmol/L 2.6 - 5.7

Serum B12 292 ng/L 180 - 900

I appreciate you are not Drs but and advice would be appreciated.

THANK YOU

Jill

[HarryE]

You do look slightly over medicated, but if your endo was happy with that I don't think your GP should be interfering.

But I hope you are doing something about your B12 too - it is terrible

[Jillymo in reply to HarryE]

Hi HarryE

My Gp is not the easiest to confront & I was rather annoyed he cut my thyroxine without consulting my endocrinologist.

When I asked if he had done my T3, T4 he replied they only go on the TSH,

I tried to explain this was not sufficient testing but he was having none of it & lowered my thyroxine.

Vit B12 was classed as normal ! Jill

[HarryE in reply to Jillymo]

Well it isn't - it needs to be at least 800. You are probably suffering symptoms from that deficiency.

Can you contact your endo & ask him to intervene?

[shaws]

It's not up to us to educate doctors but sometimes it has to be done otherwise we remain unwell. If he refuses to listen to you then due to his reducing your dose only to get the TSH into a range when most of us feel good with a low TSH or even suppressed for some. My TSH is often 0.01 and GP doesn't bat an eyelid.

The procedure used by your doctor is , i.e. patient's TSH is low = reduce levo = patient's symptoms getting worse, blood test TSH has risen. GP waits till it's in range or above before increasing dose again. So the roundabout continues for years - the patient never truly recovers. No wonder some go it alone.

I know you are aware that to go on the TSH only is not good for you. I'd just take a dose which makes you feel well and refuse to reduce.

Your B12 is low and it may not be classed as a 'deficiency' by your GP. It is now recommended that our B12 be around 1,000. Buy methylcobalamin B12 which can either be in patches (1 or 2 per week) or sublingual tablets and it must be methylcobalamin B12. You could ask him to test the instrinsic factor for B12 as it takes around 20 years for stores of Vitamin B12 to be depleted. Excerpt:

Vitamin B-12 deficiency and depletion are common in wealthier countries, particularly among the elderly, and are most prevalent in poorer populations around the world. This prevalence was underestimated in the past for several reasons, including the erroneous belief that deficiency is unlikely except in strict vegetarians or patients with pernicious anemia, and that it usually takes ≈20 y for stores of the vitamin to become depleted. This article reviews the prevalence of deficiency and its underlying causes, which is relevant to assessing the potential benefits of fortifying flour with this vitamin.

ajcn.nutrition.org/content/...

[Jillymo]

I am unable to refuse his decision because he has changed my prescription.

I have been on this not so merry go round so many times before & have considered going it alone with natural thyroxine but not sure how to do so.

Yes i am aware doing just TSH is not reliable but my Gp is adamant it is the only test the surgery does'.

Thank you for your input

Shaws

[Hidden in reply to Jillymo]

Jillymo,

If you are still under the care of an endo, you could ring his secretary and explain your GP has reduced the meds that endo prescribed and you feel very symptomatic.

If endo has referred you back to GP's care, I would tell the practice manager how unhappy and unwell you are feeling and maybe ask to see a different doctor.

Although the doctors look after each other, if you make enough waves, they might change their mind.

Many members only function well with an under range TSH.

Flower

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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[Jillymo in reply to Hidden]

My endocrine appointment is not until May, he has kept my TSH low for that very reason, many of us feel better with a low TSH.

The Dr who has cut my meds is head of the practice & is not one to be messed with, one of those that what he says goes.

Surely he should recognise you cant go on a TSH result alone.

It is so frustrating. Jill

[Hidden in reply to Jillymo]

Jilly

Many GP's only go on the TSH. It is all they have been trained to do.

I would ring endos secretary as your GP shouldn't be changing meds that have been prescribed by your endo.

If you don't like ringing, you could always send an email but ensure to put all details like hospital and National Health number.

Flower

[Glynisrose in reply to Jillymo]

My endo tried to reduce my NDT from 2 grains to 1 1/2 but I stormed his diabetes clinic and demanded a correct prescription as I am a very aggressive person, sorry you need to learn that to get what you need you have to put your foot down! Your GP cannot lower or change your meds without your express permission or if you sit there and say nothing that is tantemount to agreeing.

[Jillymo in reply to Glynisrose]

Hi Glynisrose,

I must say you are extremely lucky to find an endo to prescribe NDT, my endo will not entertain it.

I can assure I am no pussy when it comes to confrontation with Gps & consultants, I have taken a consultant to tribunal before now and won my case.

It does not help when your battling with a Gp who like Hitler what he says goes he is also the head of the practise.

I am trying to get myself referred to St Thomas so i do not wish to get thrown out of the surgery until iv'e been referred.

I am awaiting until Monday morning to approach someone else because I feel this Gp has no write to interfere with my endos preference range of my TSH of which is low.

What is the point of being sent to a specialist if the Gp interferes in his decision ?

I can fully understand why some patients loose faith & rare up.

Best wishes

Jill

[helvella Administrator]

Quite obviously, when you write The practice nurse said i was being under medicated. it is simply because the nurse doesn't know what he/she is talking about.