Under active thyroid

[Viio3]

I have recently been told that I have thyroid disease by endocrinologist who was very vague and didn’t explain much. He also wanted to leave me for 6 months and re test despite the fact that I have many symptoms of the thyroid but to complicate matters a bit more I am also peri menopausal. I have no idea what my results mean and he said he doesn’t believe in hrt as it’s risky. After my insistence to see him he just said that I could have some thyroid medication to see how I get on. I am in 50mg small amount of thyroxine…the question I have is: who would manage this as my current endocrinologist clearly has no interest in that… so I go to endocrinologist or to menopause doctor? Many thanks

[FancyPants54]

Jesus! He's in the dark ages. Take no notice of him whatsoever regarding HRT. Time has moved on. He hasn't. The risk of HRT has dropped considerably now we have oestrogen we can take through the skin rather than in tablet form. There is no risk for clot using transdermal oestrogen.

Are you in the UK? If so, read up about your peri symptoms on this wonderful web site. It's right up to the minute with it's advice and is using HRT that is widely available on the NHS. Listen to the podcasts and videos too. Decide what you would like to try based on what you have learned from it and then go and see your GP and ask for what you want.

menopausedoctor.co.uk

You need to have a blood test to check your thyroid levels in 8 weeks time. Your GP should do this for you. It will probably need increasing at the 8 week mark and you will feel worse if it's not increased when it needs to be. Then you wait another 6-8 weeks and get tested again and increased if you still don't feel right and on until you do.

[Viio3 in reply to FancyPants54]

Thank you. That’s very helpful. I have been told to check my levels again in 3 months. I have paid privately for it and the said professor has no interest from what I can see. My husband was horrified that he sent me partial results just saying “autoimmune thyroid disease….” With no explanation and I had to wait for a whole weekend to get more clarification. He refused to call me just sent an email saying that it’s not a big deal… once I reminded him I had come to him in the first place as I have symptoms that are unpleasant he then agreed to follow up consultation. So tricky…

[PurpleNails Administrator]

Hello & Welcome to forum

The doctor is very vague saying “thyroid disease” without any explanation.

Was this a private endocrinologist or were you referred with an issue?

If there are symptoms and blood test results showing hypothyroidism - why should you be expected wait a further 6 months?

What results have you had. Do you have access to your results such as TSH, FT4 & FT3

TSH (thyroid stimulating hormone) is pituitary hormone and signals the thyroid to produce thyroxine. It rises when the thyroid is struggling in a attempt to produce sufficient hormone.

The thyroid produces several hormones, the main ones being hormones thyroxine (T4) and the other triiodothyronine (T3). T4 is converted to T3 in the body’s cells and tissues. T3 is an active hormone and is needed by all of the cells and tissues of the body.

FT4 & FT3 are the unbound levels which need to be measured and become low when you are hypothyroid.

A high percentage of under active thyroid is caused by an condition called autoimmune thyroiditis in uk, also know as Hashimoto’s. It confirmed by testing antibodies. Thyroid Peroxidase (TPO) and Thyroglobulin (Tg). Were these tested? Hypothyroid is treated the same even if not autoimmune.

Important to check key nutrients. These need to be optimal for Levo to work well. B12, ferritin, folate and vitamin D.

50mcg is a starter dose. You need to be restested after 6 - 8 weeks, has this been scheduled?

When you test ensure you always in the same way? Often recommended to arrange blood draw early in the day, fasting over night,except water (delaying any levo dose until after draw).

This is a good idea as it gives consistent results and shows the daily highest TSH, lowest FT4.

A late afternoon sample taken after food & dosage might have very different results to a sample taken as recommended. Doctors often aren’t aware of this or believe it’s irrelevant.

Do you take any supplements containing biotin, as high doses can skew results, check all labels. I cease supplements containing any 7 days before draw to be on safe side.

I thought HRT was a widely prescribed medication, all medications have risks, the benefit verses risk should always be discussed often it isn’t. Why does this dr not “believe” In it? Is your GP helpful, can they advise you on this?

A GP is usually expected to manage hypothyroidism. Endocrinology usually only get involved in complicated cases. EG despite a very high dose the TSH remains high.

[Viio3 in reply to PurpleNails]

Thank you sooo much that is highly helpful and I will have to read it tonight again to digest it all. The consultant I saw is private and did lots of tests mri (due to bad migraines) heart check, plus lots of blood tests. The results showed white matter lessons (which he said are ok and not to worry about) and than he said blood results showed two antibodies that shouldn’t be there. I have symptoms:

- terrible tiredness (not easy with 7y old twins)

- migraines

- dry skin

- cold feet hands

- hair falling out

- weight gain

- libido

And much more my GP is useless and not many good ones around. I had a great private one but he retired… I am in London so if you can recommend anyone I would be happy to pay and see them.

I now have blood results but have no idea what they mean…

Thanks so much

[PurpleNails Administrator in reply to Viio3]

Those are all hypo symptoms. Getting on optimal dose is the right plan.

The “two antibodies”are likely to be TPO & TGAB (thyroid antibodies) but do get actual copies. There’s many other different types of antibodies.

I’m in a different area & have never been to private specialists or GPs. So can’t recommend anyone.

You can start a new post asking for recommendations for private endocrinologists and / or GPs based the area closest to you, or where you can easily travel to. Those with recommendation can private message you.

Many get their own private blood test before seeing a new specialist, which saves a lot of time.

thyroiduk.org/help-and-supp...

This page on thyroid uk has the option to purchase an information pack. There is a list of what information it contains, including private doctors list. There is also a “contact us” link. Here you can request just the list of private endocrinologists.

[Viio3 in reply to PurpleNails]

Thank you I am super grateful for your help and knowledge. You are right these are the two antibodies and results:

TPO - 257kU/L

Thyroid stimulating immunoglobulin (TSI) - 0.112 IU/L

No idea if what any of this means but I guess I will need to get a good GP who will monitor and take care of it.

Thanks so much

[PurpleNails Administrator in reply to Viio3]

Ok yes, those are both thyroid antibodies. Positive TPO Thyroid Peroxidase confirms Autoimmune Thyroiditis. 257kU/L look a high level what was the lab range usually shown as either (0 - 34) or <34 for example

Thyroid stimulating immunoglobulin (TSI) - 0.112 IU/L is usually a marker for hypERthyroid (autoimmune Graves) is this negative? References I’ve seen typically (0 - 1) or <1.

Thyroglobulin antibodies (TgAb) is another antibody associated with under active autoimmune.

[SlowDragon Administrator in reply to Viio3]

High TPO antibodies confirms autoimmune thyroid disease also called Hashimoto’s

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

What’s your diet like

Are you vegetarian or vegan?

Thyroid hormones need GOOD Vitamin Levels

Being hypothyroid frequently causes LOW stomach acid and poor nutrient absorption results in low vitamin levels

See you have twins …..you need all the energy you can get!

Did you have traumatic birth, eg large blood loss in labour (can cause central hypothyroidism)

Central hypothyroidism

bestpractice.bmj.com/topics...

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

endocrinologyadvisor.com/ho...

academic.oup.com/jcem/artic...

ec.bioscientifica.com/view/...

When hypothyroid TSH should rise. TSH is pituitary hormone that is telling thyroid to work. The higher the TSH the more it’s requesting thyroid hormones

Many Hashimoto’s patients have a poorly responsive TSH…..a bit like central hypothyroidism

[SlowDragon Administrator]

If you’re hypothyroid you’re going to need to be on higher dose levothyroxine over coming months

50mcg is only a starter dose

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Which brand of levothyroxine are you currently taking

How long have you been on just 50mcg

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested and is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with autoimmune thyroid disease. Gluten intolerance is often a hidden issue too

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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s/Ord’s (commonly known in UK as autoimmune thyroid disease).

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Viio3 in reply to SlowDragon]

Thank you so much. This is super useful information. I will be noting it all down. I feel like I am in the huge sea and you guys are helping keep me afloat! Thank you

[SlowDragon Administrator]

Once you start on replacement thyroid hormones dose is increased slowly upwards in 25mcg steps until on approx full replacement dose

guidelines on dose levothyroxine by weight

Even if we frequently 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 eventually on, or near 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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more……. some less

healthunlocked.com/thyroidu...