Seeking advice and hope

I am seeking advice and hope. I am a 21 year old female, diagnosed with hypothyroidism with positive thyroid antibodies around 12 months ago after suffering from severe constipation.

I have been on various doses of levothyroxine and recently reduced back to 50 as endo said I was over treated with a TSH of 0.80 (0.2 - 4.2) I have never felt well since being on levothyroxine. I guess I'm looking for hope. I really am at my wits end, I just feel like giving up. I recently lost my job after my boss said I was making my illness up and this has upset me. Not a day goes by when I don't think about the things she said and did. Please if anyone could advice I would be grateful thankyou

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Anya19,

You are not overtreated on 75mcg with TSH 0.80. There was absolutely no need to reduce dose to 50mcg. Do you have results and ranges for FT4 and FT3?

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 dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your endo.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

Surely you could have got a doctor's note to state that you are hypothyroid if your boss needed proof? If you were sacked because she didn't believe you were hypothyroid I suggest you contact the Citizen's Advice Bureau to see whether you have a case for unfair dismissal.

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Thankyou I was taking 175mcg levo at the time of the TSH 0.80. Free T4 19.3 (12 - 22) Free T3 3.1 (3.1 - 6.8) and GP reduced my levothyroxine based on these bloods to 50mcg. I have a doctor's note that has signed me off with stress

Current results TSH 9.2 (0.2 - 4.2) Free T4 11.4 (12 - 22) Free T3 2.1 (3.1 - 6.8)

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Anya19,

GP should never have reduced dose by 100mcg when TSH was within range. Dose reductions should be in 25-50mcg increments maximum.

You are very undermedicated and overtly hypothyroid now. TSH is very high and both FT4 and FT3 are below range.

If you were dismissed after presenting a doctor's not for stress you should still speak to the Citizen's Advice Burea about unfair dismissal. I think you have 3 months to make a claim.

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GP should not be interfering and changing dose if you are being managed by an endo.

GP obviously has no idea about Hashimoto's. He should have seen the very low FT3

The endo is the specialist (though many sadly still don't seem to know what they are doing)

You are now extremely under medicated

Has any medic explained that you have Hashimoto's? I doubt it.

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

Low vitamin levels stop Thyroid hormone working

See Box 1 in link

"Some possible causes of persistent symptoms in euthyroid patients on L-T4"

onlinelibrary.wiley.com/doi...

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...

So you need to get your dose back up, probably in 25mcg steps, also urgently get GP to test vitamin D, folate, ferritin and B12.

If they are unhelpful say you suspect coeliac disease.

Or get tests privately

Come back with new post once you have results and ranges, for advice on what and how much GP should be prescribing

Seriously consider trying strictly gluten free diet for about 6 months. If it helps, as many of us find it does, then stick on it

Once you get FT4 towards top of range and TSH around one (or lower) if FT3 remains low (quite likely) then you may need a small dose of T3

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get vitamin testing from GP.

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice if testing everything

DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Prof Antony Toft - used to be President of British Thyroid Association and the Queen's physician

brilliant article about over reliance on inaccurate blood tests - just published

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

Reply

Anya

Your TSH is in range, absolutely no need to reduce your dose. If it was me I would put it back up and of your GP queries it then just say you are in range so no need to reduce and show her the Pulse article that Clutter has mentioned, it's question 6 you need.

For the Hashi's, as well as adopting a gluten free diet, supplementing with selenium L-selenomethionine 200mcg daily can help reduce antibodies, as can keeping TSH suppressed.

Have you had vitamins and minerals tested? Very important that these are at optimal levels when hypo, and Hashi's can cause low levels or deficiencies which means that thyroid meds can't work. Ask for

Vit D

B12

Folate

Ferritin

And if ferritin is low you need

Iron panel

Full blood count

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Thankyou I was taking 175mcg levo at the time of the TSH 0.80. Free T4 19.3 (12 - 22) Free T3 3.1 (3.1 - 6.8) and GP reduced my levothyroxine based on these bloods to 50mcg. I have a doctor's note that has signed me off with stress

Current results TSH 9.2 (0.2 - 4.2) Free T4 11.4 (12 - 22) Free T3 2.1 (3.1 - 6.8)

Reply

Anya

Then you have a GP who doesn't know how to treat hypothyroidism. Dose changes should be at 25mcg increments, never as much as 125mcg reduction at once.

TSH 0.80.

Free T4 19.3 (12 - 22)

Free T3 3.1 (3.1 - 6.8)

These results shouw a good TSH and a good FT3 but a dire FT3. You are not converting T4 to T3 so you really need the addition of T3. Ask to be referred to an endo, one who specialises in thyroid not diabetes. Email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos and ask on the forum for feedback on any you can get to.

TSH 9.2 (0.2 - 4.2)

Free T4 11.4 (12 - 22)

Free T3 2.1 (3.1 - 6.8)

Your latest results show that you are dreadfully undermedicated now, with a way above range TSH and FT4 and FT3 below range. Make an appointment, preferably with a different GP, take the Pulse article which says (Question 6)

""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)."

and ask for an increase. Retest/increase by 25mcg every 6 weeks until your levels are where they need to be for you to feel well.

Those levels now, and the fact that you have Hashi's, probably mean that your nutrient levels are pretty dire too. Ask for those vitamins and minerals to be tested, post the results in a new post and we can suggest if you need to supplement.

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Anya

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

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Your endo is talking crap sadly most of them do

I suspect he has failed to test

Ferritin

Folate

B12

Vit d3

Because they are utterly vital in the whole scenario

What are your results for freet4 and freet3 they are only thing that matters ...no doctor anywhere should treat via TSH

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Highly likely to have absolutely dire vitamin D, folate, ferritin and B12

As SeasideSusie said your results on 175mcg showed very very low FT3 so you are poor converter

This probably due to very low vitamins and gluten intolerance

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