T4 & T3 GP still saying normal no action - Thyroid UK

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T4 & T3 GP still saying normal no action

Tldg45 profile image
21 Replies

After seeing my private endo and being told to increase thyroxine to 150mcg, bloods to be rechecked in 4 months my results are as follows. Endo did say poor conversion for T4 to T3 in letter to GP. Had bloods done last week and my GP says no action required. I'm at my wits end - no energy, breathlessness, aches, pains and more weight gain.

Serum TSH 0.16 (0.55 - 4.8)

Serum free T4 9 (9 - 23)

Serum free T3 2.6 (3.5 -6.5)

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Tldg45
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21 Replies
Clutter profile image
Clutter

Tldg45,

TSH is low, FT4 is bottom of range and FT3 is below range. Have you seen your GP to discuss a dose increase and your endo's advice to increase dose to 150mcg? Your GP may be reluctant to increase dose because it will suppress TSH. It might be useful if your endo wrote to your GP advising a dose increase.

Tldg45 profile image
Tldg45 in reply toClutter

I've been on 150mcg since seeing endo earlier in the year, so bloods checked as per his request.

Endo said that cannot assess a patient as being truly T3 deficient until TSH is below 1 which mine now is, yet my GP looking at bloods has put no action required.

Clutter profile image
Clutter in reply toTldg45

Tldg45,

Some GPs have no understanding of FT3 and most will dose according to TSH. Is your endo not investigating why FT4 and FT3 are so low on 150mcg which is not an inconsiderable dose? Perhaps you could ask your GP to do a coeliac screen to rule out gluten intolerance causing malabsorption?

I think you need T3 added to Levothyroxine. Your endo can write a prescription. German Thybon 20mcg or French Sanofi Aventis Cynomel 25mcg are far more affordable than Mercury Pharma which costs £258+ for 28 x 20mcg. Alternatively you can buy T3 online and self medicate.

Tldg45 profile image
Tldg45 in reply toClutter

I did look in to purchasing some but was unsure of which sites to use and whether the medication was licensed. I am call my surgery tomorrow and insisting on seeing a GP to discuss endo's recommendation and if they will prescribe some T3.

Tldg45 profile image
Tldg45 in reply toClutter

Would low t4 and t3 cause fatigue, I have no energy to do anything and if I try and get out of breath and start sweating. I'm feeling really miserable at the moment with it all

shaws profile image
shawsAdministrator in reply toTldg45

Yes you'd feel quite unwell. If T4 isn't being converted to T3 what is it's purpose?

Breathless is very distressing and a clinical symptom for a need for thyroid hormones.

web.archive.org/web/2010103...

You may well be Resistant to thyroid hormones which means you can only recover on large doses of T3. But increases should only be gradual.

web.archive.org/web/2010103...

Tldg45 profile image
Tldg45 in reply toshaws

Thank you for the link, air hunger is a much better description than breathlessness. I have been saying for months now that I felt something wasn't right, feel totally let down by my own GP surgery and they way that my concerns have been ignored.

shaws profile image
shawsAdministrator in reply toTldg45

Unfortunately it is not unusual as they are poorly trained and know no symptoms. The priority laid down by the BTA are that our TSH has to reach 10 before diagnosing unlike the rest of the world who presribe when TSH is around 3+. However doctors are willing to prescribe any other meds, especially anti'd's, if patient keeps appearing in the surgery. :)

Tldg45 profile image
Tldg45 in reply toshaws

I was offered antid's even though I kept telling her it was my symptoms that were getting me down and if we could deal with them I would be feeling so low

shaws profile image
shawsAdministrator in reply toTldg45

Doctor isn't treating your hypo symptoms but a symptom of hypo with another medication. That's because she doesn't know any of the hypo clinical symptoms which all doctors knew before blood tests and levo were introduced as 'perfect'.

So if a hypo patient has clinical symptoms and GP goes by the TSH only, the patient remains unwell because she's been given umpteen other medications for the symptoms instead of an increase in levo or addition of T3 to eliminate the symptoms. The patient lacks thyroid hormones.

Clutter profile image
Clutter in reply toTldg45

Tldg45,

Low FT3 will make you very symptomatic, fatigued and out of breath. Your FT3 is low because your FT4 is rock bottom.

Tldg45 profile image
Tldg45 in reply toClutter

Will having low T4 & T3 levels be causing the weight gain and the ability to lose weight regardless of what diet I follow

Clutter profile image
Clutter in reply toTldg45

Tldg45,

Undoubtedly!

Tldg45 profile image
Tldg45

I have written down what you said and I'll look it and will definitely mention it to my Gp if I ever get an appointment

shaws profile image
shawsAdministrator in reply toTldg45

I doubt they could answer any of the above questions.

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

Clutter profile image
Clutter in reply toTldg45

Tldg45,

If your TSH was high at diagnosis with FT4 and FT3 in normal range you have primary hypothyroidism.

If TSH was low-normal with low FT4 and/or low FT3 you have central hypothyroidism.

The treatment for primary and central hypothyroidism is Levothyroxine replacement.

shaws profile image
shawsAdministrator

Give up on your GP as both your FT4 and FT3 is below range. No way can you feel well.

Your Endo has already stated you cannot convert T4 to T3 so you should be prescribed T3 only but I don't know why he advised an increase in levo (if you cannot convert T4 - that seems strange to me!

I'd phone your Endo as I believe he is the only one to be able to prescribe as the Guidelines have changed that only clinical needs can permit the prescription of T3.

Tell him your recent results. If he wont play ball (some put their own interests first) you'd have to source your own T3 for a trial.

I remained very unwell on levo although my bloods looked fine. Now that I take T3 only I'm well.

Tldg45 profile image
Tldg45 in reply toshaws

My endo said to be truly t3 deficient tsh had to below 1. I saw my GP back in July of last year about how ill I felt, bloods were taken and when asked for results were told they were normal, again when back later in the year, saw another GP who told me to increase my thyroxine and have bloods repeated in 6 weeks, again after seeing another Gp was told I was still under medicated and to increase thyroxine. Six weeks later got bloods and got a private referral to see Endocrinologist. After checking bloods he increased my thyroxine to 150 and told to repeat bloods in 4 months and if no improvement and my tsh was below 1 he recommended T3 trial. As you can see from my blood results it is below and my t4 and t3 are lower than before. According to my GP my bloods were normal and that no action was required. I'm thinking the GP hasn't seen the letter from the endo, so going to chase this up tomorrow. Hope this makes sense

greygoose profile image
greygoose in reply toTldg45

'My endo said to be truly t3 deficient tsh had to below 1.'

That doesn't make any sense. If you're truly T3 deficient, your TSH should be high, not below one. Did he explain his reasoning?

Tldg45 profile image
Tldg45 in reply togreygoose

No he didn't

greygoose profile image
greygoose in reply toTldg45

Well, I think you should ask him, because that is meaningless.

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