Newbie: Hello I'm 30 years old and have... - Thyroid UK

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klaire2 profile image
25 Replies

Hello

I'm 30 years old and have hypothyroidism which was found in 2011. I take 50mcg levothyroxine moved down from 150mcg levothyroxine even though my levels of thyroid hormone weren't over range at the time.

I am sleeping more throughout the day, eyes are becoming sore, passing stools more infrequently, periods stopping and starting, thyroid gland swelling at the front, eyes looking dark and puffy, making more mistakes at work, ears ringing from cold weather, feeling more cold. I feel like there's no way out at the moment and losing hope of ever feeling or getting better again.

Both tests for thyroid below for comparison. Thank you for feedback.

Aug-2017 150mcg levothyroxine

TSH 0.03 (0.27 - 4.20 mIU/L)

Free T4 21.4 (12.0 - 22.0 pmol/L)

Free T3 4.0 (3.10 - 6.80 pmol/L)

Oct-2017 50mcg levothyroxine

TSH 7.3 (0.27 - 4.20 mIU/L)

Free T4 13.1 (12.0 - 22.0 pmol/L)

Free T3 4.2 (3.10 - 6.80 pmol/L)

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klaire2
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25 Replies
helvella profile image
helvellaAdministratorThyroid UK

klaire2,

You are the latest in a horrific series of people who have had their levothyroxine dramatically reduced.

In my view, except in emergencies, people should never have levothyroxine doses changed by large amounts. Ideally very slow, gentle adjustments of, maybe, 12.5 or 25 micrograms a day.

It is not in the least surprising that you are feeling worse and worse.

Assuming it was your GP who made the change, and I can't for the life of me see why he/she did that, you simply must get to see another doctor.

klaire2 profile image
klaire2 in reply to helvella

Thanks it was the GP who changed it. First from 150mcg to 100mcg then again to my final adjustment dose of 50mcg 3 days after

helvella profile image
helvellaAdministratorThyroid UK in reply to klaire2

klaire2,

Why? Just why on earth did your GP do that?

Are there any other GPs you could see?

klaire2 profile image
klaire2 in reply to helvella

I really don't know why she adjusted it even further. She told me I was overtreated. I have a phone call to discuss treatment with new GP on Thursday

helvella profile image
helvellaAdministratorThyroid UK in reply to klaire2

klaire2,

Did you have another test a few weeks after being on 100 micrograms?

To have made a second dose reduction, especially a heavy-handed 50 microgram reduction, without any evidence is pure malpractice. (With another test result it might just be ignorance and incompetence.)

Are you aware that having your blood taken for testing in the few hours after taking your tablet can mean that your FT4 level is falsely high? Also, that TSH is highest early in the morning?

klaire2 profile image
klaire2 in reply to helvella

No I didn't have another test after being on 100mcg. She then reduced it and 4 weeks later I wasn't feeling well so I had bloods done again and the TSH was above range.

I have bloods done early morning and they are done fasting and leaving off levothyroxine for 24 hours

marigold22 profile image
marigold22 in reply to klaire2

GP's pretend they know about hypo but mostly have to guess as they won't admit they don't know the first thing about it

Glen202 profile image
Glen202

I WOULD BE INCLINED TO HAVE THE THYROID GLAND REMOVED ALTOGETHER.

helvella profile image
helvellaAdministratorThyroid UK in reply to Glen202

What a very strange comment.

marigold22 profile image
marigold22 in reply to Glen202

Glen202 Know your facts before you reply to a post please

marram profile image
marram in reply to Glen202

Glen202, Are you yourself living without a thyroid?

I ask that question because, unless you are, you can have NO idea how utterly devastating and life changing having the thyroid removed can be. It is the powerhouse of the body, not an appendage we can live without, like the appendix (which likely DOES have a function, too.)

Thyroid medication, even the very best, cannot meet the needs of the body and respond to changes in the same way as the organ designed for that purpose. The human body is so finely tuned that removing an organ as central to life as the thyroid always has a knock-on effect.

Despite what doctors and surgeons might tell us when they are trying to persuade us to have it zapped with RAI or removed surgically, life without a thyroid is never the same again. One little pill a day? Rubbish.

Glen202 profile image
Glen202 in reply to marram

Marram, I had my thyroid removed recently as a result of out of control nodules that were strangling my throat, I agree with you, the thyroid is an important organ of the body but when I see people on this forum suffering to the extreme I think it might be better for them to have their thyroid removed. I take thyroxine and it ok for me but that may not be a med that is suitable for others with thyroid issues.

dolphin5 profile image
dolphin5 in reply to Glen202

Glen202, when you have had your thyroid gland removed, as I have, you have a new range of problems, as doctors tend to under medicate you, and you are especially inclined to lack T3 (because they will only give you T4, and you have no internal source).

Removing the thyroid gland is something many of us might wish we had never let them do!!!

It's clearly early days for you - you may change your opinion!!!

Glen202 profile image
Glen202 in reply to dolphin5

I'm getting along alright, thyroxine is 150 Mcg, after my operation, I ended up with reflux in my voice box, no after nearly three months the problem is subsiding after taking PPi

's, I suspect the reflux is caused by the strong anesthetics pumped into me when the surgeons removed my thyroid, anyone else had this happen?

marigold22 profile image
marigold22

Have you been tested for thyroid antibodies? If they are high, then you have Hashimotos Thyroiditis. The NHS only do one of the two tests. If you do have high thyroid antibodies it means you have inflammation in your body, and you would need to work on reducing them. You can start off by requesting that your GP does that blood test and see what the one result is. But to get both tested,you would need to do a private blood test

klaire2 profile image
klaire2 in reply to marigold22

TPO antibodies >1900 (<34)

TG antibodies 446 (<115)

Are these negative? GP told me that they are

marigold22 profile image
marigold22 in reply to klaire2

Your TPO antibody is 1900 and it should be below 34. Your TG antibody is 446 and it should be below 115. They are NOT negative. Your GP is an out and out liar. You definitely have Hashimoto's Thyroiditis

Hyburn profile image
Hyburn

Your most recent TSH is too high indicating under not over replacement. Can you get endo referral?

klaire2 profile image
klaire2 in reply to Hyburn

Under an endo and he has said I can come back a year from now

marigold22 profile image
marigold22 in reply to klaire2

OMG - does your endo have a working brain?

klaire2 profile image
klaire2 in reply to marigold22

I don't think he knows what he's doing

marigold22 profile image
marigold22 in reply to klaire2

And - how much is he 'earning' per year? Corrupt

SlowDragon profile image
SlowDragonAdministrator

Your August tests show you were NOT over medicated. Your GP is an idiot who hasn't got a clue

Yes your TSH was low, probably due to low vitamins. But FT4 was in range and FT3 was LOW, showing poor conversion.

I guess you have high antibodies this is Hashimoto's also called autoimmune thyroid disease

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Low vitamin levels stop 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

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...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Make an urgent appointment with different GP and get dose increase, 50mcg if you can tolerate that, 25mcg if not. Retesting after 6-8 weeks. Likely need further increase

Essential to test vitamins.

Seriously look at gluten free diet

SlowDragon profile image
SlowDragonAdministrator

see this reply about vitamins from SeasideSusie

I would expect your vitamins are similarly low

healthunlocked.com/thyroidu...

Louisesymons profile image
Louisesymons

Ridiculous what the English gps are doing. Going from 150mg to 50mg just because TSH levels are wrong.

My gp trying to do the same. My American consultant says my TSH levels will never comply with English gp ideals so now I’m having to source levothyroxine from Greece to supplement.

Crazy and it’s soooo cheap a packet of levothyroxine in Greece is a euro.

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