Thyroid UK
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Endo results, please help!!

I have at least a 10-15 year history of illness which I suspected back then to be Hypothyroidism and saw a private Doc who just told my GP to give thyroxine and charged £200. she lowered y dose as I had heart palps, then eventually told me to stop taking them last year. In Feb my TSH was 5.5 [0.3-5.5] which came back normal no further action. I have been very ill, lot of back and hip pain, couldn't eat, havent slept properly for many years. Cancelled our holiday in August on departure day as too ill. Ive been to A and E 4 times as my Doc told me to go there if still in pain, but obviously they just do obs and thats it. I insisted on seeing and Endo and she also referred me to Rheumatologist. My NHS Endo appointment was in the afternoon. So all tests were taken about 3pm, however I did insist that the thyroid ones should be done first thing and fasting, she gave me an envelope to have them done again in the morning. Here are the results:-

AFTERNOON:

TSH 3.0 mu/l [0.3 - 5.5] mu/L

T4 11.1 [10.0-19.8] pmol/L

T3 4.7 [3.5-6.7] pmol/L

Vitamin D 50

B12 704

Folate 8.6

Ferritin 75

(I was not given ranges for these) I always have to ask for ranges @ Gp and Hospital, they never give them!!!

MORNING TFT’s:-

TSH 3.8 mu/l [0.3 - 5.5] mu/L

T4 10.7 pmol/l [10.0-19.8] pmol/L

T3 4.7 pmol/l [3.5-6.7] pmol/L

Endo says all normal, but noted the antibodies of <1300 done by Gp were positive, but with current levels of TSH treatment is not warranted. GP said my antibodies were normal, no further action!

I was hopeful that Rheumatologist may be more helpful but she was very rude and kept saying she didn’t have time! My notes and x-rays were not available. She wouldn’t listen to anything I said and refused to accept that my joint and muscle pains could be linked to Hypothyroidism. She ordered an MRI for lower back, hip and hand pain and chest X-ray and took more bloods. I see her again 19th December.

Also:-

I am seeing GP on 21st November and wondered if anyone could tell me what info would be best to sway her back into thinking this is Hypothyroidism, she is the kind that would consider good well sourced information which I have plenty of but it needs to be short and concise really. I may drop it in for her to read prior to appointment so she can mull it over prior to appointment.

Many thanks for your help.

24 Replies
oldestnewest

Hi,

I am sure lots of people will respond soon with helpful advice but I wd suggest that you get hold of yr antibody blood test results with ranges and post here.

Best C.

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Just found the antibody ranges!

[0.0-60.0]

It says above high ref limit. This occurs in autoimmune thyroiditis. In euthyroid patients, positive antibodies are associated with an increased risk of developing autoimmune thyroiditis in the future.

The result was normal, therefore no one from the surgery has been in contact.

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So are you saying you now are not on any Levothyroxine at all?

That's utter madness

You have Hashimoto's it doesn't fix itself and go away.

Levo is not an optional medication, it's a replacement hormone

You need to start back on 50mcg Levo, retesting after 6-8 weeks. Increase in dose again likely, repeating testing each time

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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

Vitamin D is much too low

See SeasideSusie advice on this

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...

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McDermott,

Thyroid peroxidase antibodies above 60 (in your range) are positive for autoimmune thyroiditis (Hashimoto's).

Dr A Toft, consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, wrote in Pulse Magazine, "The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2 But if it persists then antibodies to thyroid peroxidase should be measured.

If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up."

TSH 3.8 along with FT4 10.7 which is very low in range indicates your thyroid is failing and Levothyroxine replacement to raise FT4 will be beneficial. Unfortunately, NHS will often decline to treat until TSH is over range or FT4 below range and if NHS endo has said thyroid results are normal it is unlikely your GP will agree to prescribe Levothyroxine but it is worth asking whether Levothyroxine can be trialled for 3-6 months to see whether symptoms improve.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted.

Read Guidelines for the Use of thyroid Function Tests and Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

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_...

Low vitamin D can cause bone and joint pain. Vitamin D 50 is sub optimal. Optimal is 100 -150. Supplement 5,000iu D3 for 8 weeks and then reduce to 5,000iu alternate days and retest in March. If you are prescribed Levothyroxine it must be taken 4 hours away from Levothyroxine.

Ferritin 75 is usually adequate.

B12 704 is good.

Folate 8.6 is unlikely to be deficient.

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No Doc lowered to 25mcg and then half tablet as she said at risk of heart failure. I continued taking low dose until she said not with raki h as no better!

If anyone could advise best info to give her to understand fully, I know she will at least give me Levo again.

Thanks

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Not worth taking that should say!

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healthunlocked.com/thyroidu...

Previous post and thread. There is an EDIT button you can use to change things. The downward facing arrow below your post - Click onto it and then Click onto EDIT. You can then remove things or add :-)

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Thanks, I’ll get there!!

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.... you are doing well :-)

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McDermott,

Email Louise Roberts as I suggested for a copy of the Pulse article.

Unless you were horribly overmedicated it is hard to see how you were at risk of heart failure. Palpitations can be a sign of undermedication and overmedication and may even be unrelated to thyroid. Although palpitations can be debilitating and distressing they rarely damage the heart.

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I have the pulse article obtained from Louise, however the above quote from Clutter does not appear anywhere in the article I have received. Could you please confirm where I can get a copy of the above to take to my GP on Tuesday as I feel the one I have is not helpful. Item 6 on the one I have is totally different, does not make any sense and is misleading which will not help. Many thanks.

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McDermott,

I took the quote from Guidelines for the Use of Thyroid Function Tests in thyroiduk.org.uk/tuk/about_... The quote was taken from the Pulse article and should be in the article Louise sent you.

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Thanks. No it’s completely different. I noticed others have posted that they felt the one they received was not same and not helpful to take to GP. This needs to be cleared up as it’s very confusing, especially for newbies. Is there any way to get the original article which hopefully includes the quote you used? I need to show original quote to convince my GP on Tuesday. Many thanks for your response.

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McDermott,

The quote I posted was taken from the link which is taken from the Pulse article. I don't have the Pulse article to compare. Please see SeasideSusie's post and look under Question 2.

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mcdermott

If you have a document dated 1st June 2010 which starts off with

"Endocrinologist Dr Anthony Toft answers GP Dr Pam Brown's questions on thyroiditis, thyroid eye disease and thyroxine dosing"

then that is the correct article and the statement Clutter has quoted is definitely there under Question 2.

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Thanks. I was told the one to show Doctor was Question 6, that’s where the confusion lies. Could anyone explain the TSH reference where it memtions measurements of 10 mU/I? Not the usual measurements for TSH.

Many thanks for your responses.

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mcdermott

Question 6 is about the TSH being in the lower part of the reference range, the FT4 being in the upper part of the range and even over range as long as T3 is kept within range, which SlowDragon quoted in her post further up the thread. There doesn't appear to be any mention of antibodies regarding question 6 anywhere in the thread.

Could anyone explain the TSH reference where it memtions measurements of 10 mU/I? Not the usual measurements for TSH.

All my TSH tests have had the unit of measurement as mIU/L or IU/L or uIU/ml or mu/L and as the ranges are all typically around 0.2-4.2 or very close, there doesn't seem to be any difference.

I see your unit of measurement for TSH is mu/l with a range of 0.3-5.5 which is exactly the same as my GP's, slightly different from when I get a private test done when it's 0.2-4.2mIU/L.

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Many of us have experienced palpitations due to under medication

They never seem to consider this

Gluten intolerance and Hashimoto's is common and this can also cause palpitations

Suggest you print this list out and tick all that apply

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

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Just a bit confused! You said neither doctor or hospital will give ranges so where did you get the ranges from?

Just a bit concerned you may have used them from another thread and if that's the case they may be quite wrong for you as they differ from lab to lab.

For instance my local lab gives top of range for FT3 as 6.8 but the hospital who does my bloods it's 5.7 and my reading was 5.5 so quite good with one set and low with the other.

Otherwise I was going to comment that if you rang the Pathology Lab at the hospital they would be able to tell you.

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Sorry, I have been very confused myself trying to research, make notes etc. whilst feeling ill. On one of my previous posts the antibody ranges were there, so I checked on my patient record for Gp online and all the ranges are there. It’s kust the endo who doesn’t write the ranges, but I have phoned twice to ask for them. It’s hard to do the work of a medical student when we are so ill, is t it? I’ts a total disaster!!! Many thanks for your concern, it is very much appreciated as mistakes are inevitable and can’t be afforded with hypothyroidism, although the NHS seem to think it’s fine!!!

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Just glad you weren't guessing! Hope you get the correct help! It is a lot to take in when you are feeling rubbish and doctors appear often as not wanting to know or care.

Thank you for putting my mind at rest

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No problem

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OMG. This is appalling treatment from " so called professionals " I have, and still am, being mistreated this way. Hope you get sorted and start to feel better

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Thank you, you too

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