Advice please!

[Maggiesmum]

Hi, I'm fairly new to this forum and wondered if you could please advise on a few queries I have. Not sure if it's the right thing but I've posted my test results in my Profile. Should I be aiming for an 'optimum' TSH level? I was prescribed 25mcg in Nov 2013 , then increased to 50mcg Mch 2016, then increased to 75mcg Jan 2017. This drops TSH then it rises up again until the GP thinks I'm adequately over the TSH lab range before increasing dosage. You appear to recommend a low TSH level - where does this info come from? My reason for asking is back up for my GP visit, early last year I suggested I was willing to undergo private tests only to be told by my GP "don't bother bringing the results here because I will bin them, we only recognise the Lab we use". Thanks for your help.

[SlowDragon Administrator]

Looking at your results on your profile (very helpful) your GP’s have been very badly letting you down

TSH is far too high for someone on levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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

[e-mail]

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...

Aim is to bring a TSH under 2.5

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

First step is to get FULL Thyroid and vitamin testing privately (as your GP is clearly very unhelpful)

Private testing frequently uses exactly same lab as NHS

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Which brand of levothyroxine are you currently taking?

Do you always get same brand of levothyroxine?

Email Dionne at Thyroid UK for list of recommended thyroid specialist endocrinologists...you may need Togo over GP’s head to get correct treatment

What are your main symptoms?

List of hypothyroid symptoms

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

[Maggiesmum in reply to SlowDragon]

Thanks for your reply. I was in a bit of a panic to get some info because didn't expect to get a doctors appointment so soon and am going away tomorrow morning until late Saturday.

The NHS Guidelines are very helpful, I'll certainly print them off and be prepared! I'll also get the other info you suggest, thank you.

I always seem to get the same make of thyroxine - Almus. I take it 6.30am and before my recent blood tests which were 10.30am I didn't take that day's dose until after the tests were done. I then have breakfast 8ish.

The day I had my recent bloods the GP also checked Folate = 3.6ng/mL (3.3-99999.0) and B12 = 397ng/L (190.0-910.0). She took these because I'm having a problem with my toes and she was thinking Diabetes. Ultrasound scan yesterday showed neuroma on both feet.

My main symptom that is annoying me most is tiredness. From being a child I've managed with 4-5hrs sleep maximum. About 20yrs ago I suddenly became severely anaemic and would just fall asleep, had gastroscopy/hysteroscopy because they thought I must be bleeding internally but nothing showed up. Prescribed iron tablets and this resolved itself after a couple of years. I've presented at my GP over the recent years with severe tiredness, thinking it was anaemia again but bloods come back OK. Since having access to my records I now think this tiredness increases when my TSH is going up. Currently I'm having to use an alarm clock which I've never used before, take meds then go back to sleep for an hour or so. By lunchtime I'm yawning away and falling asleep. Other symptoms include - brittle ridged nails, aches and pains in feet, hands, shoulder, depression, fuzzy head and sore eyes which I didn't know could relate to thyroid until recently. Friends comment "you always have a cold" because I generally have cold symptoms, plus a dry hacking cough - saw chest consultant last April who said "there's nothing wrong, I think you're a worrier". Hands and feet are always cold BUT have had this problem all my life.

My aim is to ask at my appointment next week if I can be referred to an endocrinologist and that if they will at least look at the results if/when I have private bloods done. Unfortunately I'm seeing a Nurse Practitioner so don't know exactly what authority he has.

[SlowDragon Administrator in reply to Maggiesmum]

So you need to get full testing for pernicious anaemia

Likely B12 and folate are far too low ....especially as you are so hypothyroid

Low B12 symptoms

b12deficiency.info/signs-an...

If GP has already done this or won’t do further tests or offer B12 injections

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

As you already have some low B12 symptoms you probably need B12 injections....but again if they won’t .....getting started on B12 sublingual lozenges.

Jarrow B12, 1000mg .....2-3 per day or up to 5 a day

After month or so you can slowly reduce

Ask GP to test thyroid antibodies and vitamin D

Vast majority of primary hypothyroidism is due to autoimmune thyroid disease diagnosed by high TPO and/or high TG antibodies

Ask/insist on 25mcg dose increase in levothyroxine

Bloods tested 6-8 weeks later

[Maggiesmum in reply to SlowDragon]

Thank you so much for all this info which I'll digest before going into battle!

I've queried Pernicious Anemia a few times with GP, and told "NO".

People MUST get access to their records and keep a check on them. Since accessing mine I've found the Lab would comment something like "shows underactive thyroid" then the GP comments "satisfactory". Also Lab recommends to re-check in say 2 months - GP has ignored this on several occasions.

[SlowDragon Administrator in reply to Maggiesmum]

Absolutely agree

When I got access to historic test results on line discovered vitamin D had been under 20nmol. Was never told or prescribed anything

[SlowDragon Administrator in reply to Maggiesmum]

Low B12 is extremely common when hypothyroid and frequently missed by GP

B vitamins are water soluble so it's not a problem if take slightly too much as we just per out excess

[SlowDragon Administrator in reply to Maggiesmum]

Links about autoimmune thyroid disease and low vitamin D

Yet still most Hashimoto's patients struggle to get NHS to test vitamin D

All Patients with autoimmune thyroid disease should have vitamin D tested annually

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.

Same applies to low B12 - extremely common in hypothyroid patients

All patients who are hypothyroid should have B12 tested

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, although a placebo effect cannot be excluded, as a number of patients without B12 deficiency also appeared to respond to B12, administration.

Folate supplements can help lower homocysteine

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Further B12 testing

nutris.viapath.co.uk/pages/...