High TSH: Hi new here am I under medicated Taking... - Thyroid UK

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High TSH

Katid profile image
29 Replies

Hi new here am I under medicated

Taking 25mcg levo

Diagnosed 2013

Was happy on higher doses

Thankyou

TSH 78 (0.2 - 4.2)

Free T4 10.6 (12 - 22)

Free T3 2.8 (3.1 - 6.8)

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Katid profile image
Katid
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29 Replies
Clutter profile image
Clutter

Welcome to the forum, Katid.

You are desperately undermedicated. FT4 and FT3 are deficient which is why TSH is so high.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Why was your dose reduced? What dose was it? How long have you been taking 25mcg?

Katid profile image
Katid in reply to Clutter

Thankyou my dose was reduced because of symptoms of tremor and sweating and weight loss

Dose used to be 200mcg levo and 10mcg T3

Been taking 25mcg for 2 months

Clutter profile image
Clutter in reply to Katid

Katid,

Well the fool who made that reduction has really mucked things up. If you were overmedicated your dose should have been reduced in 25mcg increments every 6-8 weeks until you were no longer over medicated. Your dose needs increasing to 75mcg - 100mcg now and thereafter in 25mcg increments at six week intervals until TSH is 0.2 - 1.0 with FT4 in the upper range.

Katid profile image
Katid in reply to Clutter

When I felt well

TSH <0.02 (0.2 - 4.2)

Free T4 20.7 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

They were the only results I felt well on

All other times I felt unwell

Clutter profile image
Clutter in reply to Katid

Katid,

Those results are excellent. Why was your dose changed?

Katid profile image
Katid in reply to Clutter

Thankyou

Dose was changed I am guessing because of the suppressed TSH

As soon as I mentioned the weight loss etc to her (which I had even before diagnosis and had not been looked into before then) the dose was changed

Clutter profile image
Clutter in reply to Katid

Katid,

Your GP clearly did not know what she should be doing. You weren't overmedicated because FT4 and FT3 were within range despite suppressed TSH. GP should have decreased dose in 25mcg increments if she truly though you were overmedicated, not practically stop it. I hope you'll see a different GP, one who knows what he or she is doing.

Yes, very. Why was your dosage decreased? 25 mcg Levo is a "starter" dose only! Take a look at your TSH: it's 78 (!!!) the posted range is (0.2-4.2) so it's off the charts high. And your free T3 is below the posted range! What on earth is your GP doing to you with these atrocious results? Please give some background to explain why Levo left at this dosage?

Katid profile image
Katid in reply to

Thankyou I had symptoms of hyperthyroid like weight loss and tremor and sweating

SlowDragon profile image
SlowDragonAdministrator

Can only imagine you feel dire

Have you got Hashimoto's (high antibodies)

What about recent tests for vitamin D, folate, ferritin and B12

These tend to also be absolutely dire in this situation, you may need supplements to improve to help thyroid hormones

Has your GP now increased dose, if not do you have enough Levo to do so anyway

Katid profile image
Katid in reply to SlowDragon

Thankyou thyroid antibody results are

Thyroid peroxidase antibodies 203.5 (<34)

Thyroglobulin antibodies 275 (<115)

I have enough levo to increase on my own

Will post vitamin and mineral results now

SeasideSusie profile image
SeasideSusieRemembering

Katid - it sounds very much like you have Hashimoto's and have had a Hashi's flare/hyper swing which is why your Levo was reduced, but to reduce it that much was crazy. Now you have swung back to hypo again and you desperately need an increase in dose. Have you got previous results/dose when you felt well. Have you had both types of thyroid antibodies tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)?

Katid profile image
Katid in reply to SeasideSusie

Thankyou yes TPO antibody and TG antibody results both elevated

When I felt well

TSH <0.02 (0.2 - 4.2)

Free T4 20.7 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

They were the only results I felt well on

All other times I felt unwell

in reply to Katid

What dose were you taking then?

Was the dosage dropped gradually or in one fell swoop?

Increases/decreases need to be done slowly and gradually in 25 mcg increments over a period of weeks!

Katid profile image
Katid in reply to

Thankyou the dose I was on was 200mcg levo and 10mcg T3 and the dose was reduced in one go

SeasideSusie profile image
SeasideSusieRemembering in reply to Katid

Katid Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it.

The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these hyper swings, then they panic and reduce or stop your thyroid meds.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

So it sounds very much as though you may have had a Hashi's flare and it sent your test results haywire (maybe you had hyper type symptoms), your GP panicked and reduced your meds. Your results show that you desperately need your meds increased again so go and see your GP and ask for an increase in dose.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo only. Add T3 into the mix and TSH may well be suppressed, FT4 can lower and FT3 should be nearer the top of it's range.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Gluten/thyroid connection: chriskresser.com/the-gluten...

**

TSH <0.02 (0.2 - 4.2)

Free T4 20.7 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

That is actually a pefect result.

From thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet was written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist and is available at pharmacies and on Amazon for £4.95

Also, Dr Toft 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 Pulse article by emailing louise.roberts@thyroiduk.org.uk print if off and highlight question 6 to show your doctor. The booklet will also be useful as it is a British Medical Association booklet written for patients.

Point out that those results where you felt well fit perfectly with what Dr Toft is saying in the article.

Also, you now know more about Hashimoto's (autoimmune thyroiditis is their term for it) so you may have to 'educate' them about how symptoms and results fluctuate and how you need your dose readjusting once the hyper swing is over and you revert to hypo again, and that treatment needs to be tailored to this. Dose adjustments should be in small increments, not massive changes.

SlowDragon profile image
SlowDragonAdministrator in reply to Katid

This is perfect looking result. FT4 and FT3 are both in range

I guess the endo freaked out at low TSH but TSH is pretty much always low when on T3,

Once you get back up to this dose (probably need to increase in steps) Any future blood tests always get as early in morning as possible and fasting, plus don't take Levo in 24 hours prior to test, and don't take T3 in 12 hours prior to test, delay both and take straight after blood test. This is to keep TSH as high as possible

Katid profile image
Katid in reply to SlowDragon

Thankyou

All results done fasting and early morning

I leave 24 hours for levo

12 for T3

Katid profile image
Katid

Thankyou I am experiencing hyperthyroid symptoms of weight loss, sweating and tremor

SlowDragon profile image
SlowDragonAdministrator in reply to Katid

You can get these symptoms when very hypo. It's likely due to your low vitamins

SlowDragon profile image
SlowDragonAdministrator

Going strictly gluten free should help reduce Hashimoto's symptoms

thyroidpharmacist.com/artic...

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

Katid profile image
Katid

Thankyou

I had symptoms like headaches and I came down with a cold last week

Katid profile image
Katid

Ferritin 22 (30 - 400)

Folate 3.6 (4.6 - 18.7)

Vitamin B12 244 (180 - 900)

Total 25 OH vitamin D 40.7 (25 - 50 deficient)

Taking 210mg ferrous fumarate for 4 years

Taking 800iu vitamin D for 4 years

Results done 3 months ago

Thankyou

Katid profile image
Katid

I don't take PPIs

Possibly coeliac

Doctor suspects it so might insist on testing for it

Thankyou

Boohbette17 profile image
Boohbette17

I was lying in bed & reading a TSH of 78 made me jump right up!

All I can say is a MASSIVE hug to you & PLEASE listen & adapt to a strict gluten free & perhaps dairy ( casein protein) free lifestyle. My God!! I'd love to give your doc a word or two ( more like 100!)

Please also incorporate bone broth in your day ( overcooked chicken soup) - yes there is also beef but lets use the less likely reactive foods)

you can make it in a crock pot. It helps w/sealing your gut lining which is usually the reason Hashi's starts ( food particles circulate im your bloodstream, starting the autoimmune onslaught). GOOD LUCK - keep us posted!!😊🌈💞

BTW I also have BOTH thyroid antibodies elevated over 400 & thats AFTER the TPO came down from 886.8 - using these lifestyle changes in food. Also eat as many lightly cooked green leafy vegetables . And eat vitC rich foods ( helps many body functions) Oh!! And stay hydrated w/water ( perhaps squeeze of lemon sometimes) water helps everything circulate /function. 💐

SindeeRae profile image
SindeeRae

I was taking levothyroxin .175mcfg

On Aug. 3, 2017 I had labs done and I was 27.6 for my Ts4.

The reason why it was so high though, was because my depression was severe and during that depression phase I had an issue going on with my younger 2 kids. I wasn't taking my medication regularly like I should. One time I went 2-3 days in a row without taking them, because I could find them.

Before I had that appt though, I had got back to taking them regularly after I calmed down from my kids issues.

2017, AIG. 14 I had to go back for more labs to retest and I was already at 4, but Dr went ahead and upped my levo to .200 MCG.

I was told normal 0 is *0.47 - 4.68*

Don't know if this info. Is important, but I had papillary cancer and I had to have it fully removed.

SlowDragon profile image
SlowDragonAdministrator in reply to SindeeRae

SindeeRae You need to make your own post if you want members to reply

SindeeRae profile image
SindeeRae in reply to SlowDragon

Was I not responding to I guess katid? That's what I had intended. She was asking if she was under medicated. From what my Dr, has told me, I assume she is, but didn't want to come out and say that, because I am not a Dr.

SlowDragon profile image
SlowDragonAdministrator

Healing you gut is so important after this disastrous reduction in Levo

More bone broth info

thyroidpharmacist.com/artic...

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