Thyroid UK

Autoimmune thyroid disease (Hashimotos) but no inflammation - feel like an anomaly

Please can someone help me to understand before I go mad?

If I have autoimmune thyroid disease (Hashimotos) and have never had raised inflammation markers does that mean I am an anomaly?

Symptoms - ears ringing, joint pains, breathlessness, sluggish bowels, tiredness, feeling cold, losing hair, low concentration, puffy and dark eyes

Thanks

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I shall give you clinical symptoms - we don't get them all. I never had inflammation but some people have very high antibodies which might be a different matter. Treatment for hashi's and hypo are the same. except for antibodies and going gluten-free can help reduce the attack of them.

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

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

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

(I am not medically qualified).

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Thanks my doctor says I no longer need thyroid replacement hormone since my levels are now normal

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For goodness sake, your doctor cannot stop levothyroxine if you have already been diagnosed with hashimotos or hypothyroidism.

Many doctors are ignorant about how to treat patients . Even if your results are 'in range' he cannot stop prescribing as once we are diagnosed it is a lifelong prescription and until we die. That is the reason why we do not pay for any other prescriptions for any other disease/problems we may have in the future.

Your TSH has to be 1 or below, with a Free T4 and Free T3 in the upper part of the range.

We have to read, learn and ask questions and that is why there are so many membes on this forum unknowledgeable doctors or endocrinologists.

Beware of a doctor who states we no longer need thyroid hormone replacements - it shows he is completely unkowledgeable. We have a very serious medical condition if not given suitable thyroid hormone replacements.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards.

Also ask for B12, Vit D, iron, ferritin and folate as deficiencies also cause symptoms.

Once diagnosed - treatment is life-long with adjustments from time to time.

If your doctor doesn't agree change your doctor. You can tell him you've had information from the NHS Choices for help/advice about dysfunctions of the thyroid gland Healthunlocked Thyroiduk.org.uk.

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Will post vitamin levels now thanks

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I don't know what you are meaning by high inflamation markers so I can't comment on that. The symptoms you describe sound like vitamin deficiencies. For example, ringing in the ears and breathlessness could be low B12. You also may not have enough thyroid hormone. Puffy and dark eyes may be low iron. If you would like to post recent thyroid and vitamin blood test results people will make sensible suggestions to help you understand your condition.

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CRP always low, Doctor took me off levo since he thinks I no longer need it

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Well, to diagnose Hashimotos it's elevated TPO and TgAb antibodies, not CRP.

If you needed levothyroxine and were diagnosed hypothyroid, you shouldn't just stop taking meds. How much were you taking and what were your blood test results? Also, what were your blood test results when you were first diagnosed?

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TPO antibody 604 (<34)

TG antibody 377.5 (<115)

TSH 5.6 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.1 (3.1 - 6.8)

Taking 25mcg levo

When first diagnosed

TSH 44 (0.2 - 4.2)

FT4 10.2 (12 - 22)

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Zenn1

I do not know about the inflammation part but looking at your TSH, T4 and T3 it looks like you are severely under medicated. Ideally the TSH should be suppressed at around 1 or below. T4 and T3 need to be above the midpoint range to feel better. Have you checked your vitamin levels?

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Yes

Ferritin 63 (30 - 400)

Folate 2.2 (2.5 - 19.5)

Vitamin B12 445 (180 - 900)

Vitamin D 60.1 (50 - 75 suboptimal)

I take B12 injections every 3 months, 1 iron tablet a day and vit D tablets 800iu

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Hi, you have received some great advice. To further add to it- your B12 is too low for someone on injections. It shows you are not absorbing properly. Look up symptoms if B12 deficiency - as said - ringing in ears and SOB definitely- ask Dr (your new one!) for more regular injections. A good book is Could it Be B12? Sally Pachlok. Tracy Witty’s website b12deficiency.info/

And the Pernicious Anaemia forum on here. Your folate is far too low you need to supplement and eat some lovely dark green veg. Please take a good B complex to balance the B’s - I like the methylated , active versions, see how you feel on them. A simple way to start work on your digestion is to get Viridian’s Digestive Aid and take before meals. Drink lots of nettle tea - using 2-4 teabags at time. Soon you’ll be able to make own from new ones coming up for free. 😊 very high in vitamins and minerals.

Keep us updated. Jo

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You were definitely hypothyroid when diagnosed and you have autoimmune thyroid disease known as Hashimotos.

TSH 5.6 (0.2 - 4.2), FT4 13.7 (12 - 22), FT3 3.1 (3.1 - 6.8) These results are definitely NOT normal. You are hypothyroid with these results.

Firstly the TSH is over range and your doctor should not say they are normal when above lab range. Secondly, you do not have enough FT4 or FT3 to maintain good thyroid hormone function for your body. This lack of thyroid hormone will make you feel ill. Although FT4 and FT3 are just within the bottom of the range they are not good at all. They are best within the top third of the range.

You needed to increase your dose to 50mcg and restest in 6 weeks time and then probably another dose increase to bring your TSH to 1 or slightly less which is where most people feel well.

Your doctor does not know what he/she is doing, go and see a different one. HOw much levothyroxine are you taking at the moment? If taking none then you need to restart levothyroxine.

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Taking 175mcg Levothyroxine

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Your GP needs educating about Hypothyroidism. Levo is a replacement hormone, replaces what you can't produce yourself, it doesn't work like an aspirin. Would he take insulin off a diabetic? Total donkey! I'd find a new GP, one who might have at least half a clue!

And if these are your latest results:

TSH 5.6 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.1 (3.1 - 6.8)

then you are undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel best.

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Thanks, the doctor says my thyroid hormones are normal and that is what he goes by, I think he's wrong

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How can they be normal when TSH is out of range.

From thyroiduk.org.uk/tuk/about_... > Treatment Options

"Dr Toft 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)."

Email Dionne at tukadmin@thyroiduk.org for a copy of the article then highlight question 6 to show your GP. Better still, find another GP, this one is guaranteed to keep you very unwell.

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It is so ridiculous - these doctors.

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Definitely, not sure what he was thinking

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What to have for dinner?

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Run away from such an ignorant GP as fast as possible

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Change your doctor as he is very poorly trained and will not help you to recover. The aim is a TSH of 1 or lower - not somewhere in the range which your doctor is doing.

Both your Frees are far too low, i.e. FT4 and FT3 need to be nearer the top of the range. Not at the bottom. T4 (levothyroxine) is an inactive hormone and has to convert to T3 (liothyronine) the only active thyroid hormone required in all of our T3 receptor cells which enables our whole metabolism to function, from head to toe and brain and heart need the most.

Both FT4 and FT3 need to be nearer the top of the range not languishing at the

bottom.

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

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

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I know, I don't know what planet the doctor I saw was on, not on Earth that's for sure

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You need to change your doctor and hopefully get someone who can diagnose/treat you till you are well.

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Was diagnosed hypothyroid and receive treatment for hypothyroidism, endo aware I was officially diagnosed

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Doctor is no good. He/she shouldn't harm your health. Ask to be referred back to Endocrinologist if he wont increase your dose.

You can tell him you've contacted Healthunlocked Thyroiduk who are the NHS choice for information and help and state that you need more hormones, 25mcg increases every six weeks until your TSH is 1 or below.

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Goodness me! Find another (better) doctor who actually understands how to treat your thyroid. You are hypo so you need levothyroxine - more than what you’re taking I would imagine - I’ve got Graves Disease so I had the opposite problem to you - so don’t stop it.

Your B12 isn’t very high either considering you are having injections every three months.

You could try going totally gluten free to reduce your thyroid antibodies- I went GF two or three years ago and my antibodies have really plummeted. I did it because I had heard it was successful for people who had Hashimoto’s. So it might be worth giving it a go but don’t let your doctor stop your Levothyroxine

PS - My CRP levels are very low, I’ve got inflammatory arthritis and IBS and the last rheumatologist I saw thinks I’ve got or am heading towards having Sjorgens as well as Graves so I think my CRP is low because I’m GF.

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You need to seriously consider dumping that GP, Most only take notice of your TSH and ignore the rest (your FT3 is barely in range so I expect you feel quite unwell).

Your TSH is clearly above range not only do you definitely need levo, you nead it increasing to bring it at least in range and preferably down to around 1. Levo does not ‘fix’ hypo, it controls it by supplying the hormone your body cant ie if you stop taking it you will become very hypo again. He is an idiot

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In this early stage of Hashimoto’s, a person will usually have elevated thyroid antibodies. Up to 80-90% may show an elevation of thyroid antibodies when tested in blood, thyroglobulin antibodies, and thyroid peroxidase antibodies, respectively.

However, some people may never have thyroid antibodies present in blood, but sure enough, upon a thyroid ultrasound or biopsy, changes in the gland consistent with Hashimoto’s will be apparent.

Extract from thyroidpharmacist.com/artic...

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TPO antibody 604 (<34)

TG antibody 377.5 (<115)

Hashimotos or not please? Thanks

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Yes

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Also ultrasound showed coarseness of thyroid with enlargement

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Hashis. Although really what does it matter? I've misunderstood - not sure what you mean by no inflammation? Thyroiditis, of which Hashi's is a type, is an inflammation of the thyroid gland

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Low CRP

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CRP is a very generalised marker of inflammation. Raised thyroid antibodies are a specific marker of a thyroid under attack - inflammation, whatever you want to call it. You are not an anomaly, but suffering hypthyroidism for the most common reason: an auto immune condition. shaws SeasideSusie and Nanaedake have given some sound advice. :)

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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 is very poorly understood

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

find a new GP, one who actually has some idea

Ask GP for coeliac blood test first before going gluten free

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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:
tukadmin@thyroiduk.org

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

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

Getting vitamins optimal and dose of Levo increased enough to lower TSH to around one and FT4 towards top of range

Plus strictly gluten free diet

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

Dionne at Thyroid Uk has list of recommended thyroid specialists some are T3 friendly

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Wow - You need to run from this doc as will likely kill you! Seriously, you need to make an official complaint about him/her or report because even if you're okay in the end, his incompetence will kill someone else who doesn't think to come here or believe doctors must know best. Doc should not be practicing if they can screw something this basic up!!!!

I am always beyond words!!!!!!

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