Going in circles: Hi Since my last results I have... - Thyroid UK

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Going in circles

Helentalking profile image
10 Replies

Hi

Since my last results I have had my levo reduced to 75mcg levo. I had a call from my doctors to go and have my bloods repeated as my endo appointment was cancelled and the Endo is concerned about my low TSH results.

They have now come back -

TSH- 8.8 range .1 - .5

T4 - 10 pmol/L range 9 - 19

Doctor has again increased my levo to 100mcg and promised to look into it deeper once all the covid 19 has been controlled!!

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Helentalking profile image
Helentalking
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10 Replies
Marz profile image
Marz

I would read through your last post of two months ago. It was suggested you should NOT reduce your dose based on the TSH. Now you know what happens! Only the FT3 when over range can indicate over-medication. Upping and downing your Levo is confusing for your poor body 😎

Helentalking profile image
Helentalking in reply toMarz

Thank you Marz,

I wasn't going to follow doctors advice but just wanted them to see exactly what they were doing to me.. so hopefully I have proved a point and can now move forward and get this properly checked as I am now going all guns blazing. I'm putting on weight AGAIN, have no finger prints.. would love to have better skin than my bearded dragon, bloating and worst is my throat and trying to eat.. probably forgotten loads more that I just put up with.. x

Marz profile image
Marz in reply toHelentalking

So are you going to have Private Testing through Thyroid UK ? T3 very rarely tested in the NHS ...

Helentalking profile image
Helentalking in reply toMarz

They have promised to do this but yes failing that.

Marz profile image
Marz in reply toHelentalking

Docs may request - Labs usually refuse - sigh !

Fruitandnutcase profile image
Fruitandnutcase in reply toMarz

Exactly! I never had it checked in the whole year I was being treated for Graves. Nor vitamins n D. In the end I gave up and did my own home finger prick tests.

SlowDragon profile image
SlowDragonAdministrator

Just was about to say the same as Marz

Never ever allow GP to change dose based on just TSH

Always insist that you get FULL thyroid testing ...TSH is extremely unreliable at best if times, but especially with Hashimoto’s

healthunlocked.com/thyroidu...

shaws profile image
shawsAdministrator

Unfortunately many patients who're hypothyroid have GPs who adjust their patients' doses according to the TSH alone. Never do they check FT4 and FT3 if patient is still complaining.

Print off a copy from an 'expert' a "real expert" and give to your GP - it wont make him change his mind as they have to 'follow' their guidelines but, at least, it wont harm to offer him a print-out. This is an extract from link below:-

"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. Unfortunately, the medical profession has clung to the misleading TSH test since the some physicians decided to do so in the 1970s. Doctors are taught that hypothyroidism is a high TSH--when it is, in fact,the state of inadequate T3-effect in some or all tissues. They are taught wrong.

TSH not a thyroid hormone and is not an appropriate guide for either the diagnosis or treatment of hypothyroidism. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT

and adjust the dose to keep the TSH at the bottom of its range. The physician cannot object. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase

the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems.

You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

hormonerestoration.com/"

Why is Research continually ignored - making the 'specialists' not so 'expert' in treating patients and not permitting their patients to have their health restored -due to having to follow inappropriate'guidelines'..

Helentalking profile image
Helentalking in reply toshaws

Thank you for this. My doctor normally looks at my T4 only as my tsh has been at .01 range .1 - .5 for over a year.. with me being on different doses of levo up to 175mcg and back down again to latest 75mcg. I have mentioned that it looks like I'm not converting so now have the post copied promise.. although doesn't help me atm and NHS are trying to encourage ppl to continue getting health support x

shaws profile image
shawsAdministrator in reply toHelentalking

To confirm that you aren't coverting, you have to have a Free T4 and Free T3 blood test.

The advice - to get optimum results - is the earliest possible test, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and test and take it afterwards. A Full Blood Test is:- T4, T3, Free T4, Free T3 and thyroid antibodies. (If antibodies have already been tested you don't need this).

If GP won't do these, you may prefer a private test and blood is drawn at home. You also must be well hydrated a couple of days before. Just for information, this is a link:-

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

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