Any help regarding NICE guidelines and best practice appreciated

[Kpresto3]

Long post sorry I had written a complaint about my care and Hashimoto's diagnosis and hypothyroidism treatment.

I have had a response and was wondering if there are any NICE guidelines or clinical knowledge summaries to help me with my reply? My concern hashimoto's being dismissed, bloods not being monitored at all when pregnant in 2016 (see timeline of bloods).

Below is the summary of the response.

Bloods

APRIL 2015

FT4 14.6

TSH 6.6

TPO antibodies 449

No mention of Hashimoto's thyroiditis, considered sub clinical hypothyroidism.

JAN-SEPT 2016

Pregnant no TFT done or monitoring

JAN 2017

FT4 not done

TSH 3.08

FEB 2018

FT4 not done

TSH 3.55

MARCH 2019

FT4 13.4

TSH 5.2

OCT 2019

TPO antibodies >600 UI/mL

FT4 12.8

TSH 6.88

Start 25mcg Levothyroxine

Bloods redone in 8 weeks

DEC 2019

FT4 14.3

TSH 10.2

Increase to 50mcg Levothyroxine

Bloods redone in 8 weeks

FEB 2020

FT4 16.9

TSH 5.53

Increase to 75mcg Levothyroxine

Bloods redone in 8 weeks

MAY 2020

FT4 17.1

TSH 4.68

Highest FT4 since bloods started and just above normal range.

Would usually consider upping does slightly at this stage but due to COVID and advise to GP practice to suspend all but emergency blood testing, as we felt FT4 was in the normal range. Decison made to keep dose the same as would not be be able to do follow up bloods to check dose increase was appropriate.

Apologies for not contacting you to information you routine blood monitoring was not going ahead at this stage and to repeat when lifted. This deviation in NICE guidelines was unfortunate.

Raised TSH and normal FT4 in line with clinical knowledge summaries guidance in sub clinical hypothyroidism.

Increase in May could have been considered if symptomatic and increase could have caused hyperthyroidism without routine testing.

Hashimoto's thyroiditis

Hashimoto's thyroiditis is a term used to describe the effect of anti-thyroid antibodies on the thyroid gland where after a period of time it may become underactive. The term in itself is not considered that important it simply indicates that the underactivity is due to auto-antibodies. It also does not influence the way that this condition is treated in any way and it is not managed differently from any other form of hypothyroidism. Hashimoto's is a thyroid issue and not a separate issue with your immune system. You may just have a slightly higher risk of developing other auto-immune diseases in the future.

Having a positive anti- TPO antibody is simply an indication of the fact that a patient with a positive result and sub-clinical hypothyroidism is more likely eventually to develop an underactive thyroid than someone who does not have positive anti-TPO antibodies. This blood test does not need to be repeated as the level has no bearing on symptoms or management in nyway.

I stated that I am concerned that they should have addressed sleep, stress, food sensitivities and vitamin deficiencies in order to optimise the anti-TPO anti-bodies. This was discussed with the endocrine specialist registrar and they said that there is no robust evidence supporting this information. She also re-iterated the fact that anti-TPO antibodies levels have no impact on symptoms or management of the condition. They are only concerned with FT4 levels and TSH levels.

Other bloods

FT3 is not done in general practice as I have mentioned before. When we request TFT the results show TSH and if abnormal also FT4, are only done in patients with thyroid cancer and we have been told nwver to do this test.

Coeliac screening is only done where replacement is appropriate but blood tests do not improve and we are concerned about malabsorption. Hashimoto's does not cause poor gut function or food intolerances in itself.

Previously normal vit D and HBA1C in 2015.

Folate levels, Vit B12 levels, iron levels and Vit D levels are not directly linked to thyroid disease but of course some of the symptoms of deficiencies of these can mimic the symptoms of hypothyroidism.

[SlowDragon Administrator]

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Aim is to bring a TSH under 2.5

gp-update.co.uk/SM4/Mutable...

Vitamin deficiencies common with autoimmune thyroid disease

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

Low ferritin frequent in hypothyroidism

endocrineweb.com/profession...

[JAmanda]

I'd take them up on their suggestion oif a dose increase right away given you still have symptoms and say you'll get private tests if necessary, just so long as they keep increasing the dose TIL you feel well and your t4 is not over range.

If that doesn't work, then at least you will have exhausted the GP route before needing to try other routes.

Wanted to add a link but can't see how.