Hashimotos?: Hi I am wondering if anyone can... - Thyroid UK

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Hashimotos?

Lp8731 profile image
18 Replies

Hi

I am wondering if anyone can help. I have been feeling increasingly exhausted over the last few years but with a busy job and home life I am now at my wit's end. I feel I can't concentrate on work and I cancel time with friends due to feeling so tired. I am healthy and exercise regularly.

I have been to the doctors on three occasions over the last 3/4 years and had blood tests for thyroid issues but they have all come back normal. However last July after not being able to get a doctor's appointment I had a thyroud test through a blood testing service. This showed my antibodies were raised and over 450 (not sure what this means). They advised I probably had Hashimotos but no treatment would be required.

Since I have done a bit of research and gone dairy and gluten free (over the past few weeks as I have been feeling really tired and likey brain is not working properly). I do have a busy stressful job.

As I have been feeling worse I went to the doctors today but they advised I wouldn't need testing again as the results were still within a year and they wouldn't treat abnormal antibodies.

Basically my question is, is there anything else I should be doing? Should I speak to someone else? Or do you think lifestyle changes I have made recently (gluten and dairy - I have always been active) will significantly help how I feel.

I honestly am not sure what to do. Sorry it's so long! 😊

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Lp8731
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18 Replies
Peanut31 profile image
Peanut31

Hi, the experts will be along shortly, but, God your post made my blood boil.

Not you personally, but your stupid doctor.

I was in a similar situation hence the anger.

I was feeling terrible, saw an Endocrinologist (paid private) had raised antibodies, diagnosed Hashimoto’s.

Anyway, went gluten free, dairy free, took selenium, got my vitamin levels up as very low.

Even had a ultra sound scan that confirmed Hashimoto’s.

To cut a very long story short, and hundreds of pounds later I questioned how many times I would keep coming back to see him and just concentrate on vitamin levels as I was still feeling dreadful.

I became like a Recluse, crying l the time, no energy, freezing cold, muscle stiffness, hair loss, etc.

I asked for Levothyroxine and he replied no medication would help, it would make me worse.

He tried to fobbed me off with anti depressants and said go on a holiday.

Luckily for me, I was a member on here and I know he was as much use as a chocolate fireguard, I refused the anti depressants and went out separate ways

Fast forward a few months and feeling like a zombie, I went to my surgery for help, the nasty GP told me it was anxiety and if my Endocrinologist wouldn’t prescribe anything (Levothyroxine) how could she. By this time I became more knowledgeable on Hashimoto’s and told her a few facts, she turned around and said I had been misinformed about Hashimoto’s.

I replied that my source was thyroid U.K. a recognised registered charity.

Hubby who had gone with me, basically got up and said we are leaving.

She asked if I wanted another referral to a different Endocrinologist. My husband replied we will sort ourselves out.

Fast forward after Christmas and thinking there was no hope I managed to see my allocated GP, obviously, I must of looked a mess as he ordered thyroid bloods straight away.

A few days later I was on Levothyroxine, still increasing my dosage now, my TSH was 12.2, so it wasn’t anxiety (I knew that anyway)

You will find many GP says that thyroid results are in range, despite you feeling awful.

From my understanding the NHS will not treat until your TSH is 10 or over, but you can still feel bad with low TSH, you need to look at the full thyroid results.

First step, ask for the official copy of your blood tests from your GP, don’t be fobbed off, you are entitled to those by law and they can no longer charge you.

Once you have them post on here for the experts to advise.

If not successfully getting your results, medi checks and blue horizon do thyroid blood testing.

TSH, T3, T4 antibodies and vitamins, iron, Ferritin, B12, vitamin D.

They have a few options, you can either arrange for bloods to be taken at a local hospital on there list for an extra fee (I did recently cost £25) or I think blue horizon do nurse visits but, make sure they are early morning visits

Or if you know any friends that are nurses to take your blood.

Make sure you book Thyroid blood tests as early in the morning as possible. Why? Well it’s a tip we pass onto people (GP’s not aware) the earlier the blood test the worse your thyroid reading TSH, this helps secure treatment.

Only drink water and no food before the test.

Take selenium 200mcg this May help.

Eat as healthy as possible, freshly prepared foods, cut processed foods and fizzy drinks.

If you do start Levothyroxine once you have your blood test results (no guarantee your GP will look at them, some can be funny with private testing) make sure you start on 50mcg not 25mcg.

Although, without your results we can’t say what’s going on yet.

Best Wishes

Peanut31

carlaarend profile image
carlaarend in reply to Peanut31

I absolutely loved reading this, feels like my life (except I didn’t find a proper diagnosis yet)!

Peanut31 profile image
Peanut31

medichecks.com/thyroid-health

Lp8731 profile image
Lp8731 in reply to Peanut31

Thanks so much Peanut31 - it was medichecks I used last July (2017) as I couldn't get an appointment, I'll post my results from that below. However my TSH is nowhere near 10 but still feeling exhausted, so slightlu confused 😓

THS - 2.2

Free thyroxin - 16.8

Total T4 - 95.8

Free T3 - 4.43

Thyroglobulin antibody - 411.88

Thyroid antibodies - 11.4

Thanks so much for your help! Really appreciate it x

SlowDragon profile image
SlowDragonAdministrator in reply to Lp8731

You need to also test vitamin D, folate, ferritin and B12

As explained so well by Peanut31 we often have extremely low vitamin levels and getting these optimal is essential. Then your TSH may increase as you’re slowly able to use thyroid hormones

Selenium supplements can help improve conversion of FT4 to FT3

Magnesium supplements or magnesium spray for skin or Epsom salt baths may help too

Getting test as early as possible in morning and fasting for highest TSH

Peanut31 profile image
Peanut31 in reply to Lp8731

We need the ranges as well.

Can u repost with the ranges.

Best wishes

Peanut31

Lp8731 profile image
Lp8731 in reply to Peanut31

Yes of course I'll just write everything out - sorry didn't realise

TSH 2.02 range 0.27 - 4.20

Free thyroxine 16.8 range 12 - 27

Total thyroxine 95.8 range 59 -154

Free T3 4.43range 3.10 - 6.80

Thyroglobulin antibody 411.88 range 0.00 - 115

Thyroid antibodies 11.4 range 0.00. - 34

Thanks so much

Peanut31 profile image
Peanut31 in reply to Lp8731

Hi

I’m no expert on ranges, results, but SlowDragon and greygoose will hopefully help.

Take as much advice from them as you can, they have helped me and others no end on here.

You will start to feel better, but this thyroid/Hashimoto’s takes time to heal and has a mind of its own.

If you don’t get any replies do a new post asking for advice on your thyroid results.

Best wishes

Peanut31

Lp8731 profile image
Lp8731 in reply to Peanut31

Thank you really appreciate it! X

greygoose profile image
greygoose in reply to Lp8731

Are you sure about that FT4 range? Looks odd.

Your TSH says that your thyroid is struggling, but you're not yet hypo. However, results are likely to jump around when you have Hashi's. So, we don't know if this is the highest it gets, or the lowest. As somebody else said, always have your blood taken early in the morning, after having fasted over-night. That way, you will get the highest TSH possible. Doctors only tend to look at the TSH, I'm afraid.

Cooper27 profile image
Cooper27

I'm like you, with raised antibodies, but normal thyroid results. I've been working with a nutritionist to try to improve my symptoms, but we're really just working through the Hashimotos Protocol (book) by Izabella Wentz, which is well worth a read.

The current theory is that auto-immune disease starts in the gut, and the chances are you are eating something that is causing a leaky gut. The protocol has really helped - I've been following an auto-immune paleo diet, and taking supplements to help support my gut and thyroid, and feeling a lot better for it. If you can afford it, I do recommend you try something similar with a nutritionist, but the protocol is pretty helpful on its own.

Also, if you have your private test results, please share them, people will be able to give some great advice if they know your numbers.

Lp8731 profile image
Lp8731

Thank you Cooper27 I am ordering now!

SlowDragon profile image
SlowDragonAdministrator in reply to Lp8731

If you wait until tomorrow to order you make get slightly cheaper

Thyroid Thursdays at Medichecks has different thyroid tests on offer each week, ....but may not be the ultra vitamin test on offer this week

£99 normally- offer price £79

db1970 profile image
db1970

This is literally what happened to me over the passed two years - my GP saying my TSH range was normal (it was 5.7) - thankfully I have private medical insurance through work and saw the private doctor who said that I should have an antibodies test (I'd never heard of it) and mine too, were 465! She immediately put me on 50mg of Levothyroxine (that was two weeks ago) - I am starting to feel better already - the NHS has really dropped the ball on this and it makes me angry that they kept telling me it was anxiety and I should take antidepressants! I hope you get all the help you need. dx

Peanut31 profile image
Peanut31 in reply to db1970

Hi db1970

Make sure you have another blood test after 6 weeks on your current dosage.

Don’t take Levothyroxine that morning and have the blood test as early as possible in the morning. Say 8/8.30am.

Don’t eat and only drink water.

Then have another increase of 25mcg = 75mcg, keep doing this process until your results improve, but, most importantly you feel better.

When I was put on Levothyroxine I felt great, thought wow I’ve cracked it. Only to start feeling terrible and I was desperate for the increase.

I’m currently on 100mcg, but I know I’m not right yet.

If you have Hashimoto’s, it may help going gluten and dairy free as well.

Maybe try gluten free first, it is suppose to help reduce antibodies.

It helped me with my brain fog.

Best wishes

Peanut31

db1970 profile image
db1970

Thanks - I have another blood test booked in - I'm so glad that this private doctor pushed me for the antibody blood test - obviously I had to pay for it as the NHS won't test for it, but in the end it's worth it. Will try to go gluten free, bread is my downfall unfortunately! D

SazzaCat profile image
SazzaCat

Hello - after years of unrelated symptoms (gut problems, heavy periods, hair loss, depression, unexpected weight gain, exhaustion, confusion and memory loss) I finally had a test come back showing I had an underactive thyroid. My periods had shut down and I thought I was menopausal! I do have antibodies for Hashimotos and have been showing them for two years, however my doctor was convinced I was drinking too much and kept testing my liver and kidneys whilst asking me to drink no more than 10 units a week and my thyroid count came back as normal or borderline. I was told I would not get prescribed for until my count was higher. I did feel some benefit to cutting down on drinking (as did my husb). However the exhaustion and heavy periods persisted and I am now 17.5 stone in weight.

As the other posters advised I went for a blood test first thing in the morning - got a definite result right away and the GP was on the phone two hours after my test asking me to pick up a prescription for 50mg thyroxine that day.

I had, because of the gut problems, gone on every diet imaginable, gluten free did nothing and Slimming World lost me 1.3 stones and then I stopped losing.

I am now on 75mg daily. I will get my results for y'all here this afternoon as I have the day off. Trouble is I am three months into treatment, not really feeling any better, and even heavier. I dread photographs now as even my hands look fat. Horrible.

This condition has cost me jobs, lost me friends and almost wrecked my marriage. When do things start to get better?

hashimotos is an autoimmune condition so this is what should be treated flaxseed oil is the best thing for an overactive immune system also how old are you bc the onset of the menopause and loss of estrogen can precipitate hashimotos and allergies

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