Thyroid UK
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Newbie, hello

I am new here. I am a 32 year old female diagnosed with hypothyroidism in 2011.

My symptoms are mainly blood pressure 148/86, tiredness, joint pain, acne, losing hair, heavy periods, puffy and dark eyes, neck swelling, constipation, tinnitus, unsteadiness, dry skin, weight gain, depression, irritable bowel symptoms, preference for heat,

Endo is refusing to increase my dose of 175mcg levothyroxine.

TSH 4.66 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

Advice appreciated, thank you.

17 Replies
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Hi there. Yep, been there too!! Please experiment with different brands of levothyroxine and give them a month to make your mind up, this worked for me and I now know which brand suits me. If this fails after a few months, advise your gp that while you might e' within the range ' nobody actually knows what YOUR range is, and that some doctors go by how you feel rather than the result. My gp allowed me to increase by 25mcg but this was slightly too high as I had Hyper symptoms, so I now take 75mcg three days a week and 100mcgs four days a week. I also take mine at night before bed and this had a positive effect. We are all different so you need to find out what is good for you.

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Thanks. GP thinks I should increase since TSH above range indicating under medication but endo says no. Have tried Teva, Actavis, Mercury and Wockhardt all for more than 6 months

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I've never seen an endo so have only ever taken gp advice. Can you ask your gp to increase your meds and discount what the endo says? You know your own body

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I see my new GP next week (hopefully) about all of this going on.

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Your Endo is crap! I don't know why they think they are God, they are mainly diabetes specialists and don't understand thyroid. Your T4 and T3 are both very low, your TSH is too high and most people feel best with a TSH of 1 or below. There is no harm in you increasing your meds, but you may find that you have to push for a "trial" increase to see if you start to feel better, and then another and another (On those results, you could easily expect to be on 200+). I see you have some great comments below!

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Thyroid results for previous tests

November 2017 (175mcg levo)

TSH 0.03 (0.2 - 4.2)

FT4 21.3 (12 - 22)

FT3 3.9 (3.1 - 6.8)

September 2017 (175mcg levo)

TSH 5.3 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.4 (3.1 - 6.8)

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Wockhardt - made my lactose intolerance worse

Actavis - made my lactose intolerance worse

Mercury - made my lactose intolerance worse

Teva lactose free - gave me diarrhoea, stomach cramps and vomiting

I have been told by my endo to "put up and shut up" and he knows full well I am lactose intolerant.

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It may be that all Levothyroxine is making your gluten intolerance worse

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I also get a bit of a cough and a wheeze after walking a lot, mainly uphill. Takes about an hour to settle. This happens when my heart beats quite fast and I get the high blood pressure.

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Lissa85,

Did you ask why endo won't raise dose when TSH is over range?

Teva seems to upset a lot of people. It's the only lactose-free brand in the UK though. Ask your GP to write a named patient basis prescription for one of the European lactose-free brands in thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

If endo really told you to "put up and shut up" make a complaint to the head of endocrinology or the hospital PALS and ask to be assigned a different endo.

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Thanks, I asked the endo why he wouldn't increase the dose and he says it's because my levels aren't following a pattern and he says if he asks me to increase to 200mcg I will be thyrotoxic.

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Lissa85,

If he thinks 200mcg will make you thyrotoxic he could prescribe 175mcg/200mcg alternate days.

What's probably screwing up his pattern is likely to be an autoimmune attack on your thyroid. As the lymphocytes infiltrate the gland they destroy cells which dump hormone into the blood when they die. That's the usual cause of fluctuation thyroid results when dose isn't changed. Ask him to test thyroid peroxidase and thyroglobulin antibodies. If either or both are positive it confirms autoimmune thyroiditis (Hashimoto's).

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He told me they are negative.

Thyroid peroxidase antibody 809 (<34)

Thyroglobulin antibody 336 (<115)

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Lissa85,

They're both positive and confirm autoimmune thyroiditis (Hashimoto's) and are very probably why your levels have been fluctuating. Such fluctuation doesn't tend to go on for more than a few months because the cell destruction atrophies the thyroid gland and it becomes to small to produce hormone, not that you can have much thyroid function when taking 175mcg. Dose increase would actually help stabilise Hashimoto's by reducing TSH which will reduce thyroid activity.

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_...

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This underlines that current endo knows very little about thyroid. Your antibodies are definitely positive.

TPO is above 34 and TG above 115

Endocrinologist needs glasses or retraining

So your antibodies are high and this confirms 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 connection to the gut 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 at


tukadmin@thyroiduk.org

Also list of recommended thyroid specialists.

Professor Toft recent article saying, T3 may be necessary for many

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

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

Most, or many need to be strictly gluten free too

If FT3 remains low after this then, like many with Hashimoto's, you may need the addition of small dose of T3.

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Shoot your endo he clearly kniws zip

Firstly your TSH should be 1.0 or below

Your freet4 more like 19

And most importantly your freet3 should be more like 5.5

Clearly you are not converting the t4 in levo into the vital t3 plus your undermedicated

Ferritin

Folate

B12

Vitd3

Must all be tested and be at least halfway in their ranges for any t4 to t3 conversion to occur

Low magnesium is linked to BP so start by taking at least 500mg magnesium glycinate every night from now on and even morning for quite a while

Add on 2000 mg vitamin C in divided doses every day from herein

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my b/p was high on levothyroxine---that drug totally disagreed with me. changed to the NDT (natural dessicated thyroid)---and it turned my life around. check out the website---stopthethyroidmadness.and it could possibly change your life also.

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