TSH tyranny: Since going on NDT, I feel so much... - Thyroid UK

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TSH tyranny

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Since going on NDT, I feel so much better than on T4 drugs alone. However, on NDT, regardless of dosage, my TSH is always suppressed. I see a so called Hertoghe doctor in Belgium once a year (and this doctor is the one who prescribes all the hormones for me), and a regular family doctor closer to home for everyday ailments...and this doctor does not at all like my suppressed TSH. He keeps telling me it will cause bone loss, high blood pressure, possibly even a heart attack...he wants me back on thyroxine only, and tells me I should not need more than 75 mcg daily, because he has no patients requiring more than that...I don't even feel human on anything less than 5 grains of NDT daily :-(

I feel nothing I say will convince him otherwise, so I have been asking myself if there is any trustworthy source of information actually stating that a suppressed TSH isn't actually bad, apart from former thyroid cancer patients...?

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11 Replies
galathea profile image
galathea

Oh my God, his poor poor patients.... I bet some of them are too ill to crawl to the surgery.

Wouldn't bother trying to educate this moron. Suggest you run away as fast as you can. Look through Rods old posts as he managed to find details on the Nhs site, of which doctors in each area were doing prescriptions or NDT and. or t3.

Then move yourself to a doctor with a clue.

g. Xx

Parbrook profile image
Parbrook

This is the standard doctor scare story.

Low TSH on its own cannot cause these problems.

What can cause these problems is over-medication (or under-medication, except that most docs do not know about the dangers of under-medication).

The way to know if you are over-medicated is to test your Free T4 and Free T3. You may want to consider challenging your doc to do these tests to support his case that you are over-medicated and it will give you the evidence that proves you are not over-medicated.

Clutter profile image
Clutter

Anna69, I am a thyCa patient who's TSH has to be suppressed. I've not been warned that I am at risk of atrial fibrillation or osteoporosis because my TSH is suppressed. I have mild osteopenia but I doubt that was caused by 2 years suppressed TSH. I think a lot of studies have extrapolated research showing hyperthyoid patients with suppressed TSH and high FT4/FT3 levels have AF and osteoporosis later in life to hypothyroid patients with suppressed TSH only.

I would run a mile from a doctor who decided I need a dose because that's what his other patients require. Hardly a scientific way to treat your thyroid. Good job Hertoghe are treating you rather than the family doctor.

This link suggets that low (not suppressed TSH) doesn't impact bone density.

sciencedaily.com/releases/2...

This link discusses how TSH fluctuates, why dosing should not be according to TSH and why T3 suppresses TSH. tiredthyroid.com/tsh.html

I researched and spoke at length with Dr P about this as I ran a suppressed TSH for 3years on 125mg - 150 mg Levothyoxine.

Dr P explained my osteopenic spine would NOT have been from a suppressed TSH but the result of a previous very long standing undiagnosed thyroid problem.

He claims to run a suppressed TSH of less than 1 is perfectly safe as long as T3 is not too high. Reverse T3 may be measured to test levels of t4 (unused T3) in the blood stream.

LindaC profile image
LindaC in reply to

Hi Flower, I thought a suppressed TSH was to be expected on Armour or T3?

Do you recall 'how high is too high' for T3? I seem to be out of range [above range] most times I'm tested yet still with a low temperature [Dr S and P viewed my condition as pretty dire way back in 2010]. My heart is said to be fine [even though a strange arrhythmia developed prior to diagnosis... used to wake me out my sleep, jerking as if to jump start at 39 bpm] and my bone scan is also fine. Some people seem to say that, once on T3 alone, blood tests are pretty meaningless?

I long ago asked for RT3 to be tested... some seem to not even accept this?!

Thank you.

in reply to LindaC

Linda-C

Reverse T3 isn't really tested in the UK as doctors/endos have very little understanding of it. To read results correctly requires considering many other factors.

TSH IS suppressed when medicating on NDT. That is why doctors don't like it. They are taught to keep our TSH in range or there might be complications such as AF & oesteoperosis.

As I understand it ..... these conditions are only encouraged when the TSH is suppressed AND T3 is over range (& maybe T4 as well but T3 is the really important result).

I do not know about medicating T3 alone. If you want further discussion...just post a new question as there are members who medicate on T3 alone.

Flower

LindaC profile image
LindaC in reply to

Thank you Flower - yes, I took NDT for 2 1/2 years and very occasionally still do. T3 alone for coming up to 3 years. I had an awful arrhythmia [likely due to undiagnosed hypothyroidism] which I can barely detect now DUE to T3 use and my heart is said to be fine: my bones, of last month, are fine. I have read that testing bloods when on T3 alone is pretty pointless :-) Who can tell, eh when docs scaremonger so much because they seem not to know a lot about these things?

Thank you for your quick response - much appreciated.

in reply to LindaC

Whilst medicating on T3 alone I would think it still beneficial to still test thyroid hormones... just that the T3 result would be the only result to consider.

It is important not to be over range in T3 Linda.

Flower

LindaC profile image
LindaC in reply to

Thanks again Flower. I new I'd seen info in several places, this was the easiest to locate:

recoveringwitht3.com/blog/a...

This info here I've seen in many shapes and forms: "The FT3 result that is obtained is a measure of how much FT3 was floating around in the person's bloodstream. For some people this result may have little bearing on the level of activity of the T3 hormone at the cell nuclei and mitochondria. This ACTUAL T3 activity (inside the cells cannot be measured in any laboratory today) We don't have the science or technology to measure actual T3 activity inside the cells yet. This in a nutshell is one of the biggest flaws and cons in the current use of labs to 'help' 'treat' people."

So, no thyroid labs are actually indicative of real thyroid hormone activity. They are just guesses based on measuring levels of thyroid hormone in the blood of a lot of other people. This is not even close to helpful when someone doesn't respond to thyroid hormone treatment.

I agree with you though, it is worrying when we are told of the dangers. Dr John Lowe, of course, also said otherwise to the 'received wisdom'. Thanks :-)

shaws profile image
shawsAdministrator

Yes, your doctor is like many who believe that the TSH is "king". It might have seemed so when the blood tests were just introduced but not now after all these years of levothyroxine and blood tests and continuing ill-health of many, plus the development of other more serious illnesses.

The following is an excerpt and this is an excerpt:

Thyroid Science

1(1):C1-C21, 2006

ThyroidScience.com

Criticism

Four 2003 Studies of

Thyroid Hormone Replacement Therapies:

Logical Analysis and Ethical Implications

Dr. John C. Lowe

Director of Research: Fibromyalgia Research Foundation

FibromyalgiaResearch.org

,

drlowe.com

Contact

:

drlowe@drlowe.com,

drlowe@FibromyalgiaResearch.org

, 603-391-6060

Abstract

.

"Replacement" is the most widely used approach to thyroid hormone therapy. Clinical practice guidelines define replacement therapy as: adjustment of a patient’s thyroid hormone dosage so that his or her TSH and thyroid hormone levels remain within current laboratory reference ranges. Overall, the endocrinology

specialty endorses T4 -replacement as the preferable approach to thyroid hormone therapy.

Four studies published in late 2003 compared the effectiveness of two types of replacement therapy, T4 or T3 (T3/T4)

alone and combined T4 and T3 (T4 /T3 ). In three of the studies, patients who took part had been suffering [1][2][3]

from hypothyroid symptoms despite their T4 -replacement therapy. The studies showed that neither form of replacement therapy improved the patients’ symptoms. In the fourth study, researchers gave psychometric[4]443 tests to hypothyroid infants after they had been on either T4 - or T4 /T3 -replacement therapy for six and then

twelve months. Compared to healthy infants, hypothyroid infants on both types of replacement therapy had impaired psychomotor function.

In reporting this specific result of the studies—that neither type of replacement therapy effectively relieved patients’ symptoms or abnormal neuropsychological test results—three groups of people have misrepresented, perhaps inadvertently, the outcome: the endocrinology researchers who conducted the studies, the endo-

crinologists who commented on them, and the journalists who reported them. Rather than reporting the specific study result, these groups reported a false general conclusion: that no approach to T4 /T3 therapy (replacement is the only one they tested) was more effective than T3 alone. This false general conclusion violates a rule of quality scientific reporting—that we precisely formulate our statements to accurately convey conclusions thatwe can validly deduce from the studies we report.

Oddly, based on the negative outcome of these studies, some endocrinologists advise that T4 -replacement should remain the treatment of choice for hypothyroid patients. Their advice, however, disregards two humanitarian imperatives:

(1) The endocrinology specialty must officially and publicly concede that many patients continue to suffer from hypothyroid symptoms despite their use of replacement therapies. This is especially important in view of other studies. The other studies suggest that for many patients, T4 -replacement therapy increases the in-

cidence of potentially fatal diseases and boosts chronic drug use to control the patients’ hypothyroid symptoms and those of the other diseases.

(2) These patients must have access to alternate thyroid hormone therapies, especially TSH-suppressive therapies, that are safe and effective for them. These imperatives require that the endocrinology specialty now impartially consider approaches to thyroid

hormone therapy other than replacement.

web.archive.org/web/2012081...

LindaC profile image
LindaC

Oh how lucky you are to see Dr Hertoghe! NDT is a grandfathered drug and apparently not a problem for anyone [except those who seem not to understand it!].

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