Thyroid UK
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Hi everyone I am new here. Diagnosed hypothyroid in 2012 and recently had my levothyroxine reduced from 175mcg to 100mcg. On T3 before that. Now feeling awful with feeling cold, sweats, pins and needles, nails splitting, hair looking drier and coarser, food getting stuck in throat, dry skin and blotches, bumping into things, tinnitus, dizziness, tiredness, broken sleep, breathlessness, constipation and heavy periods. I am 29 years old and I don’t want to keep feeling like this. If anyone could advise I would be grateful, thank you

Sep-2017 (175mcg levothyroxine)

TSH 0.03 (0.27 – 4.20)

FREE T4 21.1 (12 -22)

FREE T3 4.2 (3.1 – 6.8)

THYROID PEROXIDASE ANTIBODIES 674.1 (<34)

THYROGLOBULIN ANTIBODIES 366.5 (<115)

Dec-2017 (100mcg levothyroxine)

TSH 4.65 (0.27 – 4.20)

FREE T4 14.6 (12 – 22)

FREE T3 3.2 (3.1 – 6.8)

19 Replies
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Another idiot medic who thinks if TSH is low then you are over medicated. You are not over medicated and with positive result for antibodies you need dose increase, TSH below 1 and gluten free diet to help suppress antibodies. Also you need tests to check blood levels of Vit B12, VitD, iron, ferritin, folate as these are all likely to be way olow due to leaky gut which is common with Hashimoto's disease which is the name for hypothyroid patients with antibodies. Most medics have no idea what to do about antibodies, do not understand levels of Vits etc will be low, do not understand GF diet will help and never refer to positive antibodies as Hashimoto's. They don't learn about it at med school. Let us know how you get on with dose increase and blood tests

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Hi and thanks, I have results of vitamin levels before and after dose adjustment even when on T3 and when it was taken away

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Can you put all three sets of vitamin results on one post

Clearly stating thyroid dose for each set of results

You should clearly see vitamin levels crash out as thyroid medication is cut

Vast majority of endo’s are not remotely interested in gut, vitamins or gluten or antibodies

It’s all beyond them

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September results showed you needed t3 but instead your doctor only looked at tsh,,, perhaps also top of the range ft4 and decided you were over medicated. Then reduced by 75mcg.... Never go up it down by more than 25mcg at a time. But as Said you didn't need a reduction except reduce Levo slightly and replace with t3, you do need t3 imho with those results.

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Hi and thanks, was on T3 briefly then it was taken away

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Post your vitamins.

When T3 is stopped Vitamin levels crash right out

Typical posts after T3 stopped showing low vitamin levels after

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels

thyroiduk.org.uk/tuk/get_in...

T3 debate in Scottish parliament

scottishparliament.tv/meeti...

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After T3 removed

FERRITIN 19 (15 - 150)

FOLATE 2.3 (2.5 - 19.5)

VITAMIN B12 233 (190 - 900)

VITAMIN D TOTAL 57.7 (50 - 75 SUBOPTIMAL, ADVISE ON SAFE SUN EXPOSURE AND DIET)

Taking 3000IU vit D. Iron stopped in Feb 2017

Before T3 removed

FERRITIN 186 (15 - 150)

FOLATE 10.2 (2.5 - 19.5)

VITAMIN B12 547.3 (190 - 900)

VITAMIN D 73 (50 - 75 same range)

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Can you edit to add in vitamin levels before T3 was stopped

These results from now? Or from September?

If they were from September, they will be a LOT worse on reduced dose

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From now

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Edited

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All much too low

Follow SeasideSusie detailed supplementing advice in all those links on T3 being stopped

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I suggest you send copy of these to GP and endo and request your T3 reinstated

You might also consider DIO2 gene test

It has helped some of us get/keep T3

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

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I agree with crimple, u definitely need an increase, obviously u feel best when tsh is below 1 like most people on here.. and also vitamins will need checking x

Go back to docs and say u felt best with tsh below 1 and need to increase your dose, tell them u want to trial an increase more chance of getting it then x

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Hi and thanks, I have results of vitamin levels before and after dose adjustment and when on T3

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You weren't over treated in September, both FT4 and FT3 were in range

You are now extremely under medicated on 100mcg

Who reduced your medication? They know nothing about fine tuning.

At most it possibly only needed tiny reduction to 167.5mcg (150/175 alternate days)

You will need to increase dose back up. If you can cope with 50mcg increase in one go, but likely will need 25mcg steps

Make urgent appointment with any GP at surgery and ask for vitamin D, folate, ferritin and B12 to be tested. Likely to be extremely low due to ridiculous dose reduction

Detailed supplements advice from SeasideSusie on Low vitamins due to under medication

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4 - this may have been similar to yours in September. Hopefully vitamins were not as dire as these then. They may be now though

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

But with Hashimoto's we must get vitamins optimal first. Levo dose increased to bring TSH down to around one and FT4 towards top of range

Many find gluten free diet helps or is essential

If after all these steps FT3 remains too low (as yours was in September) then, like many with Hashimoto's, you may need addition of small dose of T3

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

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Hi and thanks, I have results of vitamin levels before and after dose adjustment and when on T3. GP reduced the dose

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Put on new post probably. More will see it

GP is not a thyroid expert

Did a different endo stop T3, than started it?

It's all down to ridiculous cost of T3 here in Uk

£950 for 100 tablets, compared to £25-£30 for 100 tablets in France or Germany

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Different endo stopped T3

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It's utterly appalling that the battle between forward thinking endo's and ones stuck in dark ages is taken out on real patients

Obviously the real issue is the cost that NHS is being ripped off for T3

But we the patients are being slaughtered in the process

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Also consider joining Improve Thyroud Treatment campaign. Current on Facebook only, soon to have its own website

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