Newly diagnosed and seeking help: Hi, I have... - Thyroid UK

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Newly diagnosed and seeking help

DIYDorothy profile image
12 Replies

Hi, I have recently been diagnosed with an under active thyroid. Initially my GP diagnosed angina but the cardiologist disagreed and suggested thyroid problems were the cause of my symptoms of extreme fatigue and breathlessness. My cholesterol had also gone from normal to very high prompting prescription for statins. Other blood test results were normal except TSH which was 11.61. GP was reluctant to prescribe Levothyroxine but relented due to my symptoms, prescribing 25 mg/day. Having looked at this website this would seem to be too small a dose. My symptoms have been life altering as I was a very energetic person, constantly “on the go” averaging 17k steps/day. I now manage 2-3k and am permanently exhausted. Any advice would be appreciated. Many thanks for reading.

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DIYDorothy profile image
DIYDorothy
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12 Replies
Lalatoot profile image
Lalatoot

High cholesterol is linked to low T3. When T3 is low, the body cannot process and eliminate cholesterol correctly.

Statins are controversial. Personally I would not touch them. If you type statins into the search box on this site you will find lots of posts about them.

DIYDorothy profile image
DIYDorothy in reply toLalatoot

Thank you so much for your reply. I will post when I have spoken to my GP.

SeasideSusie profile image
SeasideSusieRemembering

DIYDorothy

Welcome to the forum.

Other blood test results were normal except TSH which was 11.61. GP was reluctant to prescribe Levothyroxine but relented due to my symptoms

Good grief! What is wrong with your GP? The limit for TSH is 10 and once it reaches 10 that gives you a diagnosis of hypothyroidism and a prescription for Levo. Your GP needs to go back to med school.

prescribing 25 mg/day. Having looked at this website this would seem to be too small a dose.

25mcg is a starter dose for children, the elderly and those with a heart condition. Otherwise it should be 50mcg. New guidelines do state that dose should be based on weight, but that doesn't suit everyone and it's often better to start on a lower dose and increase gradually.

Protocol is that you should be retested 6 weeks after starting Levo, increase of 25mcg, retest again 6-8 weeks later, another increase of 25mcg. Repeat retesting/increasing until your levels are where they need to be for you to feel well.

The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.

Always ask for a print out of your results when they are back and the GP has seen them. Keep a record as this will be invaluable in the future if your GP wants to change your dose, you will have a record of where you feel best, on what dose and what your levels are.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Your cholesterol is high due to your hypothyroidism and should come down when you are optimally medicated on Levo.

Statins are not recommended for females. humanbean has some information about this I believe (HB, if it is you then can link, I'd be grateful so that I can refer to it in the future :) )

DIYDorothy profile image
DIYDorothy in reply toSeasideSusie

I am overwhelmed by the detail in your reply. Thank you so much for taking the time to post this information.

humanbean profile image
humanbean in reply toSeasideSusie

SeasideSusie

On the subject of statins, a few of my favourite links are :

1) drmalcolmkendrick.org/2012/...

The graphs in the above link show that mortality from all causes is lower at higher levels of cholesterol.

2) ravnskov.nu/2015/12/27/myth-9/

The above link is written by Uffe Ravnskov - ravnskov.nu/uffe/ - the Director of THINCS - The International Network of Cholesterol Skeptics

Part of the above link is of relevance to COVID-19, although it was written several years before the pandemic. In the early days of the pandemic it was noted that people who died of COVID-19 were likely to have low cholesterol. Since most deaths were in the elderly, and the elderly were most likely to be on statins, it doesn't take a genius to work out that the old people who died were probably speeded on their way by their statins. But of course, the powers-that-be are now saying that COVID-19 decreased the cholesterol. That possibility is also covered (and dismissed) in the above article.

3) For lots of research papers on statins you'll find loads in this thread on a diabetes forum :

diabetes.co.uk/forum/thread...

4) spacedoc.com/articles/50-fa...

I like number 17 on the above list :

Even taking the best possible figures, from selected trials, and painting them in the best possible light…if you took a statin for thirty years, you could expect five to six months of increased life and that is only for men with pre-existing heart disease. For women it is pointless and cannot extend your life by even one day.

SeasideSusie profile image
SeasideSusieRemembering in reply tohumanbean

Brilliant HB, thanks so much :)

humanbean profile image
humanbean in reply toSeasideSusie

Just found another good link on cholesterol and hypothyroidism :

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Print this out to show GP

Statins are NOT recommended for anyone who is hypothyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Cholesterol will drop as dose of levothyroxine is increased

Standard starter dose of levothyroxine is 50mcg ..unless over 60 years old

Bloods should be retested 6-8 weeks after each dose increase

Dose is stepped up (as fast as tolerated) until on full replacement dose....guidelines are 1.6mcg levothyroxine per kilo of your weight

Rare to need less...some need higher

ESSENTIAL to test vitamin D, folate, ferritin and B12 and thyroid antibodies

About 90% of primary hypothyroidism is caused by autoimmune thyroid disease..also called hashimoto’s

Low vitamins are especially common with Hashimoto’s

Low iron and/or ferritin cause breathlessness

Add any results and ranges you have now

Or come back with new post once you get results

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

SeasideSusie profile image
SeasideSusieRemembering in reply toSlowDragon

Thanks for the statin link SD, I knew someone had posted it :)

SlowDragon profile image
SlowDragonAdministrator

Can see from your profile..your age (just) recommends starting slowly on some guidelines..

On others it’s anyone over 65 ...but Either way dose should still be increased slowly upwards

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.

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...

DIYDorothy profile image
DIYDorothy

Thank you so much. I feel that I will have a real chance of getting through to my GP armed with this. This website is a godsend to newly diagnosed people.

SlowDragon profile image
SlowDragonAdministrator in reply toDIYDorothy

And for thousands of UK patients left languishing on 25mcg or 50mcg levothyroxine for years

Extremely important to regularly retest vitamin levels.....ask at next test ...or test privately now

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

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