GP has stopped my T3 and increased my T4,suppre... - Thyroid UK

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GP has stopped my T3 and increased my T4,suppressed tsh and suppressed t4

Sandypotter22 profile image
26 Replies

Hi,thank you for reading this,I’m 52 and have had an underactive Thyroid since 2001,in 2012 I saw a medical herbalist after many months of chronic hypothyroid symptoms,the most debilitating being depression and anxiety,exhaustion,weight gain etc I started on t3 as well and it was life changing,I thought I had hit the holy grail,I realised this is what it felt to be normal,fast forward and in the last year I have slowly slipped again,I also have an autoimmune disorder,hymolytic anemia(I’m a legend at developing antibodies)constant infections and hypothyroid symptoms ,my last 3 bloods show suppressed tsh and suppressed thyroid output,it’s as if I’m not taking anything,my new(we relocated as well)gp has stopped the t3 completely (I feel utterly mad now)and referred me to an endocrinologist (still waiting) the last 18 months have been hideously stressful,my sister died of cancer and we moved across the country,any advice would be amazing,Sandypotter22

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Clutter profile image
Clutter

Welcome to the forum, Sandypotter22.

Did your GP say why T3 was to be stopped?

Did an NHS endo recommend that your previous GP prescribe T3?

Sandypotter22 profile image
Sandypotter22 in reply toClutter

Hi,my GP thinks the T3 has caused my pituitary to become suppressed?she doesn’t actually know why I’m not producing any T4 either,no my previous GP on seeing the amazing change in me got the t3 prescribed for me,sadly I feel as if I’m back to where I was now,my face is swollen ,eyes puffy,anxiety,exhaustion ect

Clutter profile image
Clutter in reply toSandypotter22

Sandypotter22,

Your pituitary will suppress TSH when it detects sufficient circulating T4 and/or T3. It will be the dose you take which suppresses TSH not the type of medication.

If you were taking T3 only or proportionally more T3 than Levothyroxine your FT4 will be low. T4 is a storage hormone so FT4 doesn't need to be high for conversion to T3 when T3 is being taken direct. I suspect your GP only tested TSH and FT4 from what you've said. FT3 should be tested when T3 is taken but not all GP practices can or will order FT3.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association... Perhaps you could persuade your GP to reinstate the T3 at least until you see the NHS endo who can make his/her recommendation.

If you post your recent thyroid results and ranges I can tell you whether you are optimally dosed.

Sandypotter22 profile image
Sandypotter22 in reply toClutter

Thank you so much,I will get them tomorrow,I think she’s looking for a reason why I keep getting infections and hypothyroid symptoms again? Chest infections/throat ,constant viral,i was taking 100mg of T4 and 40mg of t3,I’m now on just T4 150mg? Sandy

Clutter profile image
Clutter in reply toSandypotter22

Sandypotter22,

100mcg T4 + 40mcg T3 is equivalent to 220mcg T4. If you were optimally dosed then it's hard to see how you can be optimally dosed on 150mcg now.

Sandypotter22 profile image
Sandypotter22 in reply toClutter

I do feel shocking! It’s so confusing,she said t3 isn’t used to treat anymore and is expensive,she’s only young which is scary,in that no new thinking still! Could I have needed all of it increasing??thank you so much for your help Sandy

Clutter profile image
Clutter in reply toSandypotter22

Sandypotter22,

She's wrong, people are still treated with T3 on the NHS but it is increasingly difficult for new patients to get it prescribed and some CCGs and health authorities have banned prescribing of T3. She's right that it is expensive, that's not patients' fault though and the BTA have clearly said that financial considerations should not take precedence over patients' wellbeing.

Sandypotter22 profile image
Sandypotter22 in reply toClutter

Thank you for looking at this,my ths is 0.01 free T4 8.5 my serum creatinine is below range?and my red blood cell count below range so anemic which wasn’t mentioned?does any of this make sense to you?Sandy

Clutter profile image
Clutter in reply toSandypotter22

Sandypotter22,

TSH 0.01 is suppressed but I can't tell whether FT4 8.5 is good or bad without the lab ref range (the figures in brackets after the results).

It will help if you post the red blood cell count results and ranges.

Low creatinine:

Low blood levels of creatinine are not common, but they are also not usually a cause for concern. They can be seen with conditions that result in decreased muscle mass. Levels of 24-hour urine creatinine are evaluated with blood levels as part of a creatinine clearance test.2 Feb 2017

Creatinine: The Test | Creatinine Test: Creat; Blood Creatinine; Serum ...

labtestsonline.org/understa...

Sandypotter22 profile image
Sandypotter22 in reply toClutter

Sorry ,the range is 12.0-22.0

Clutter profile image
Clutter in reply toSandypotter22

Sandypotter22,

I presume you were taking T4+T3 or T3 only when that test was done? FT4 8.5 is very low but it wouldn't matter if your FT3 was good. FT3 doesn't appear to have been tested :(

Sandypotter22 profile image
Sandypotter22 in reply toClutter

I was taking both,but no the t3 wasn’t tested

Clutter profile image
Clutter in reply toSandypotter22

Sandypotter22,

Few GP practices can order FT3 now so if you do get T3 reinstated you may need to order private thyroid tests to check FT3.

FT4 should rise quite quickly on 150mcg Levothyroxine but it remains to be seen whether that's a sufficient dose.

Sandypotter22 profile image
Sandypotter22 in reply toClutter

I’m taking 40mg of t3 with it as well,I do feel clearer today,here’s hoping,thank you so much for your amazing help!x

Sandypotter22 profile image
Sandypotter22 in reply toClutter

Red blood cell count is 3.70 10*12/L (3.8-5.8) ?

Clutter profile image
Clutter in reply toSandypotter22

Sandypotter22,

Do you have a breakdown of the RBC? If so, post whichever result/s are flagged low.

SilverAvocado profile image
SilverAvocado in reply toSandypotter22

T3 suppressing pituitary sounds like one of those GP made up stories :(

Altho just seen Clutter has translated it. It could be a very overdramatic and inaccurate way of saying your TSH is suppressed.

SilverAvocado profile image
SilverAvocado in reply toSilverAvocado

Have just noticed in your description she's also made up the term 'suppressed freeT4', which is just struggling to understand what blood tests can look like with T3. Presumably she's never been trained in it :(

Even more clear if she thinks 50mcg of Levo is the equivalent of 40mcg of T3. It isn't. T3 is a lot stronger mcg for mcg, so you need at least 3x as much Levo to substitute for it. Some accounts say 6x, or even 10x! :(

Clutter profile image
Clutter in reply toSilverAvocado

SilverAvocado,

Suppressed FT4 just means low FT4. Doctors are trained to interpret blood tests of patients on Levothyroxine. They've not been taught that FT4 may be low or suppressed if direct T3 is being taken.

T3 is 3 x more potent than T4.

ncbi.nlm.nih.gov/pubmed/204...

SlowDragon profile image
SlowDragonAdministrator

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

As you have other autoimmune disease it's very likely

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's Gut connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first and relevant vitamins

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

You are very likely extremely under medicated.

Insist on full Thyroid testing urgently

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne: at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

waveylines profile image
waveylines

Well my heart goes out to you. The ignorance that many GPs have over the treatment of hypothyroidism is not only unforgivable but plain dangerous!! How dare she stop your T3 meds when she clearly has NO idea of what shes doing. Her ignorance & lack of understanding of the basic function of the thyroid & its hormones is absolutely abismal. Frankly in your shoes Id avoid her like the plague!!

An not surprised you feel so ill! She has caused your decline by her mis management of your condition & dabbling with your meds when she clearly has no idea. Can you see another GP? I would demand reinstatement of your meds as they were. She shouldve left well alone & let the Endo see you. Is the endo you are waiting to see a thyroid specialist?

Sandypotter22 profile image
Sandypotter22 in reply towaveylines

We love living in Devon but the downsides are abismal health care,no WiFi or phone signal! Apart from that it’s heaven,I so miss my old GP who was amazing,our surgery here i swear is the set for Doc Martins,I will see one of the Doctors who is scatty but sympathetic,she did miss a chest infection/: they rang twice a day for a week over Christmas when I begged for a blood test and it came back I was full of infection! They’d all said viral for a month! I was bedbound I was so ill,upside was my inlaws couldn’t come for Christmas! It then took two different antibiotics to kick in so I could breath again. Will fight to reinstate my t3,I’ve started back on 40mg and the 150 mg T4. Have a gentle day x

waveylines profile image
waveylines

Sorry to hear that. In all likelihood your persistent infection was probably not helped by your mis managed Thyroid treatment......lol

Id also get your vitamin D levels checked too and make sure they are in the top third of the range.

Id also get your GP to check the usual folate, B12 and iron as they may have been affected by the mismanagement.

A good GP who responds to best practise thyroid treatment for the individual is unfortunately quite rare these days. They're all too worried about theGMC and follow their computer pathways like robots! Lol....

Sandypotter 22,

Have you not considered ordering T3 yourself online and self medicate?

Sandypotter22 profile image
Sandypotter22

I did so for years and will do so again if they don’t represcribe

in reply toSandypotter22

Good for you:-)

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