Thyroxine dose chsnge: Hi all, I'm new to this... - Thyroid UK

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Thyroxine dose chsnge

Lindy42 profile image
16 Replies

Hi all,

I'm new to this site

I recently had TSH done result came back as 0.05 on the low side.

I feel well with no symptoms - GP agreed to a recheck two weeks later which came back at 0.18 only just under the lower limit.

[I have always run on the lower side of normal with NO symptoms]

- GP asked me to reduce my dose of levo thyroxine from 125mcg daily to 100mcg daily which I dutifully did10 days ago.

I now feel dreadful low mood constipation irritable and tired at the same time weight increased by 3 lb no changes to diet or exercise levels the tiny hairs on my fore arms have gone any ideas? ??

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Lindy42 profile image
Lindy42
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16 Replies
Clutter profile image
Clutter

Welcome to the forum, Lindy42.

It's not uncommon for this to happen when TSH only is used to guide dose. Ideally FT4 will always be measured because unless FT4 is considerably over range, low TSH of itself doesn't mean the patient is overmedicated. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk for a copy of the Pulse article if you would like to show it to your GP when you request a dose increase. If your GP is unwilling to reinstate 125mcg daily perhaps 100/125mcg alternate days could be negotiated.

_______________________________________________________________________________

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.

Lindy42 profile image
Lindy42 in reply toClutter

Hi Clutter,

Thank you for this advice I will get a cpoy of the pulse article to take with me me to th GP's, I will pist what happens,

Big hug

Thanks again

SeasideSusie profile image
SeasideSusieRemembering

I know what you mean Lindy, I have always had an under range/suppressed TSH with a high FT4 and my old GP was OK with this. However, she has now retired and new GP only goes by TSH and insists that I am over treated. Won't discuss it with me, told me she will refer me to an endo.

I've been experimenting, lowering my dose of Levo by even 12.5mcg brings back symptoms so I've got myself some T3 and am adding a small amount while lowering T4 slightly and will see how that goes. Not telling GP and managing to dodge thyroid tests at the moment.

Sounds like you need to go back to your original dose. Such a shame these doctors don't take symptoms into account, it's keeping many thyroid patients ill :(

Lindy42 profile image
Lindy42 in reply toSeasideSusie

Hi seasideSusie,

I know what you mean I would like the GP's to walk a fee miles in our shoes then make there judgement calls for dose changes !!!!

Were do you get the T 3 just incase...??

Regards

Lindy42

SeasideSusie profile image
SeasideSusieRemembering in reply toLindy42

Will PM you.

Lindy42 profile image
Lindy42 in reply toSeasideSusie

Sorry to be dumb what does PM mean??

shaws profile image
shawsAdministrator in reply toLindy42

It is shorthand for Private Message which means no-one else on the forum can view - it is only between those named on the PM.

We don't put doctors' names on the forum without their permission nor state where you can get prescribed medication without a prescription.

Lindy42 profile image
Lindy42 in reply toshaws

Thank you

Lindy42 profile image
Lindy42 in reply toSeasideSusie

Hi seasideSusie,

I've worked it out thank you. .Brain not on full power

X xx Lindy42

shaws profile image
shawsAdministrator

You look very well in your photo. Doctors have no right adjusting our doses according to the TSH alone. That's why so many patients' symptoms return and to try to get back up to where they were may take some time/adjustment.

This is how this doctor and holistic ones (I presume) treat:

Dr. Lowe: With most patients, I use thyroid function tests (TSH, free T3, and free T4) and thyroid antibodies only for a patient’s initial diagnosis. Afterward, I follow the practice, in principal, of Dr. Broda Barnes—that is, measuring tissue effects of particular dosages of thyroid hormone rather than remeasuring TSH, free T3, and free T4 levels.

My reason for this different protocol is simple: the TSH, free T3, and free T4 tell us only how the pituitary and thyroid glands are interacting. Of course, the test levels may also tell us something of the influence of thyroid hormone over the hypothalamus in its secretion of TRH, another hormone that influences the pituitary gland's secretion of TSH.

Tissue measures of thyroid hormone tell us what is most important, that is, how the patient's tissues other than the pituitary and hypothalamus are responding to a particular dosage of thyroid hormone. To accomplish this objective, with long distance patients, I mainly use the basal body temperature, basal pulse rate, speed of the Achilles reflex, and the voltage of the electrocardiogram tracing.

and another excerpt:

Dr. Lowe: First I suggest that you ask your doctor to question the scientific basis of the endocrinologists’ notion of "fine tuning" by TSH and thyroid hormone levels. If he does, he’ll learn that the changes he sees in your TSH and thyroid hormone levels are probably nothing more than natural variations in the levels. He would probably see the same variations if he always kept your thyroid hormone dose the same. I’ll briefly review some of the evidence that your doctor should read.

TSH levels don’t significantly correlate day-to-day[1] or week-to-week.[2] One research group measured the TSH and free T3 and free T4 levels of ten normal young men.[3] When they measured the levels every 30 minutes for 24 hours, they found that the hormone levels were lower during the day and higher at night. During the day, the free T3 was 15% lower, the free T4 was 7% lower, and the TSH was 140% lower. When the researchers measured the hormone levels every five minutes for six to seven hours (7 PM-to-11 PM), the levels varied every thirty minutes. The TSH level varied 13%, the free T3 15%, and the free T4 11%.

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

Lindy42 profile image
Lindy42 in reply toshaws

Thank you this may be helpful

Glynisrose profile image
Glynisrose

NEVER reduce your meds if a doctor tells you to. You can do it yourself if you need to. Most people it seems do better when their TSH is suppressed.

jacquelis2 profile image
jacquelis2 in reply toGlynisrose

Can please tell me how not to reduce thyroxine levels against GP's advise if it's a prescription-only drug. How are you going to get hold of the extra Meds? Please PM me if necessary. Regards, Jax

greygoose profile image
greygoose in reply tojacquelis2

Well, first of all you can try just saying NO. Your doctor is there to guide you, not dictate to you. But if you say nothing, he takes that as consent.

If he just writes a prescription for a lowered dose despite what you say, then you can buy your own on-line.

If you want addresses where you can buy the thyroid hormone replacement of your choice, just post a question asking people to PM you, and I'm sure you'll get lots of replies. :)

Glynisrose profile image
Glynisrose

Just refuse to lower your meds, it can be done if you use the broken record method, keep repeating that you don't want your meds lowered until your doctor backs down ( and he will!

Lindy42 profile image
Lindy42

Yes I took it as normal does that make a difference?

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