Thyroid UK
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Hashimotos!!

Hi x

So just wanted to ask for help please, I'm getting in to a desperate state at the moment and finding myself getting quite depressed even though I'm on antidepressants!

So Doctor finally diagnosed me with Hashimotos even though he didn't believe me when I said I was convinced I had it but blood test confirmed this but I'm so upset that ive put 3 stone on over this last year, I have a personal trainer 3x week and I'm eating so healthy with odd treats but can't seem to shift any weight at all, I've put 3 dress sizes on and nothing fits!! my skin on neck and jaw line is so sore with cystic acne and getting more on my face, my face just looks so swollen and to top it off my hair has thinned out so much. I'm taking 100mg levothyroxine and been on this for about 2 months now, so has anybody going through this? If so what advice can you give or any help will be greatly appreciated ☺

Many thanks

Clare x

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So sorry to hear that you’re feeling so low. Things will improve, I promise. Do you have some test results (with ranges) to post so that others can advise?

When are you due for your next test - you could have one now perhaps and 5hen a dose increase?

I sometimes think it’s best to buy a couple of outfits in a bigger size so at least you feel comfortable while trying to lose weight and loose clothes have the effect of making you feel slimmer!

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Thank you, I will get a copy from doctors although I have to pay for them now, I've asked for another blood test but hes not keen as he thinks if I go up any more I'm heading for a heart attack as my results on last test was 2.5 and thinks that's to low! Thank you for your reassurance xx

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Cmoor

As from last Friday, 25th May, surgeries can no longer charge for providing any test results or medical records under new EU legislation - European General Data Protection Regulation (GDPR)

pulsetoday.co.uk/home/finan...

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You aren’t heading for a heart attack with a tsh of 2.5. My last 1 was 0.003 (I do take T3) and my gp didn’t bat at eyelid. In fact because my ft4 was low and ft3 was only 3/4 of the way through the range he increased my levothyroxine.

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Could do with a sensible GP where are you?

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I'm Chelmsford, Essex

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don't suppose they are interested in moving to Yorkshire!

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Mine is in Lymm, Cheshire and if he moved I’d be moving!!!!

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Prescribing Levothyroxine seems completely random depending on your GP and where you live! V. Confusing!! My TSH was 8. 5 last test. I can't tolerate Levothyroxine so in no rush to go on it, but it was 19. 5 and is creeping down by itself. I was told that if it was consistently over 10 I would need to go on it. My t4 and T3 are very normal. I have Hashimoto's though he thought it could be graves as I tend to feel very hyper and anxious when it's out of kilter. My point is with Hashimoto's you should be tested regularly as your thyroid can kick and spurt for a while and I imagine it is easy to get the wrong dose. Levothyroxine made me feel really ill. Some people can't tolerate it,so may be better without depending on their levels, or need to look at alternatives. I think finding a good consultant is key. Let me know when you do?! Take care. X

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I don't think you do have to pay for them, anymore. I think that stopped on 25th - or have I got my dates wrong? In any case, soon you won't have to pay for them, they'll be free.

2.5 is much too high for a TSH! Your doctor knows nothing about thyroid. The aim of thyroid hormone replacement, is to take the TSH down to I or below. And it's not a low TSH that causes heart attacks, it's long-term, over-range FT3 that increases the risk of heart problems. That's all.

You will not lose weight with your TSH that high, because it means that your FT3 will be low. And it's low T3 that causes symptoms.

However, you might be shooting yourself in the foot with your exercising, because exercising uses up your calories, and you need calories to convert. So, you will be negatively impacting your conversion, and making yourself more hypo. Besides, you need a good level of T3 to sustain your exercising, and with a TSH of over 2, your FT3 won't be high enough. Just gentle walking or swimming until your FT3 is optimal. :)

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TSH should be around one and FT4 towards top of range. So it sounds like you may be ready for dose increase

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

As you have Hashimoto's are you on strictly gluten free diet?

You are legally entitled to printed copies of your blood tests- For FREE (as from last Friday )

Can you add your most recent results and ranges for TSH, FT4 and FT3.

Your say in previous post 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 primary 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. Dairy is second most common.

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)

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

Ideally ask GP for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

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I’m not of much help because I’m only 3 weeks in but just wanted to say I completely understand your frustration. That’s how I worked out I had something wrong with my thyroid - I was going to the gym, had a PT who kept insisting I should get my hormones checked and no matter what diet I followed the scales didn’t budge. Whilst I’m frustrated and worried by the diagnosis I am part relieved that I wasn’t going crazy. I started on gluten free and I’ve cut out milk - working on the cheese! This week is the end of soya for me once I’ve used it up but I’ve 2lbs off and that’s not from trying to lose weight just from the gluten and milk!

Good luck!

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Thank you for your reply, yes it's so frustrating, I've put 3 stone on in the past year since being diagnosed with under active thyroid, I do go gluten free but sometimes I'm not strict so maybe it's time to be and dairy free as well.

Wishing you lots of luck hun x

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Sucks doesn’t it! I’m a total foodie, I had to mourn the loss of my food 😂 though I did fall into the mistake of having a lot of gluten free products (novelty value) then realised I was eating a lot of gluten free junk so I’m balancing it with proper food, fruit and veg and that has helped. Good luck!

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I am going thru the same thing, thinning hair, hair breakage, weight gain, acne, and depression, even though I am taking cymbalta. I cry all the time. Like you, I don't know what to do. I will ask my doctor to test me for Hashimotos the next time I see him. Thanks for your post. I pray things will get better for you. Hopefully medical science will come up with a new medication for people like us.

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