Some advice: I am on 100mcg and have recently... - Thyroid UK

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Some advice

Ninney2019 profile image
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I am on 100mcg and have recently started to experience heart palps, slight shortness of breath. My tsh is 1.1 & t4 19.5, doc thinks it may be an over medicated issue as 1.5 mths ago tsh was at 3.5? Any help thanks

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Ninney2019 profile image
Ninney2019
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SlowDragon profile image
SlowDragonAdministrator

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

Ask GP to test vitamin levels

Low iron can cause breathlessness

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

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)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

SeasideSusie profile image
SeasideSusieRemembering

Ninney2019

To be able to interpret results we need the reference ranges that come with them. Can you post those please, usually at the side of the result on a print out you can obtain from the receptionist at your surgery, or you may have online access to your results so could check there.

A TSH of 1.1 is no way overmedicated. The bottom of the range is usually about 0.2 or 0.3 ish and as most doctors use the TSH as their guide then you are certainly not under range. However, it's FT4 and, more importantly, FT3 that tell us if we are overmedicated.

If your GP thinks that TSH lowering from 3.5 to 1.1 is overmedicated then he knows nothing about treating hypothyroidism.

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 if that is where you feel well.

HLAB35 profile image
HLAB35

You may be struggling to convert Levo to t3 at the higher dose, which is why it's essential that you get a full blood panel... The culprits of poor conversion include (this list is not complete!)....

a) Vitamin and Mineral deficiencies which can easily lead to

b) Poor adrenal (and other hormones) function (thyroid hormone resistance is common in those with poor adrenal function)

c) Food intolerance such as Gluten which will impair gastric function and may also lead to...

d) Increased thyroid hormone antibodies which also block thyroid hormones..

Or, worse case, an inability to convert t4 to t3 due to genetic issues.

So, it's not the higher dose that is the issue, it's possibly that your body doesn't know how to process t4 properly. This is a reason why many prefer a t4, t3 combo or NDT. However, quite a few people manage provided they have optimal levels of nutrients. The key thing is to gather as much evidence as possible and get those tests done.

humanbean profile image
humanbean

It is extremely unlikely that you are over-medicated with a TSH of 1.1 and a Free T4 of 19.5.

One of my guesses would be that you don't convert from T4 to T3 very well - but as usual T3 has not been tested so you couldn't know.

Another guess would be an issue with your nutrient levels - hypothyroid people tend not to absorb vitamins and minerals very well due to having low stomach acid, and their nutrient levels can drop very low or even be deficient.

The only way of knowing about your T3 and your nutrient levels is to have them tested. Note that TSH, T4 and T3 must all be tested together from the same blood sample. A Free T3 result in isolation is not helpful.

The ones that people mention on here that have the greatest effect on the thyroid and related issues such as T4 to T3 conversion are vitamin B12, folate, vitamin D, ferritin and iron.

Ninney2019 profile image
Ninney2019

Hi, thanks for your replies, I have had all vits tested and they are all within a good range. I have however been losing weight recently as I put on so much so am doing slimming world which is helping. I've so far lost 10.5 lbs, doctor did mention that over medication could come from this as levo is weight based.

Angel_of_the_North profile image
Angel_of_the_North in reply to Ninney2019

He's not talking scientific sense. We are all individuals and need what we need, not based on weight (although it can be used as a guide to starting dose after a thryoidectomy). If you have been doing slimming world, it may be that your magnesium, B12 and iron are too low and blood sugar too high from carby diet. A "good range" is meaningless. you need ferritin at least 70, vit D at lest high 90s, folate in double figures (50% of range at least) and serum b12 at top of or over range, active B12 over 75, Is that what you have? Dieting tends to make T4 to T3 conversion worse, so that could well be the problem

Ninney2019 profile image
Ninney2019

Thanks, b12 and ferritin, folate are all in good ranges. No high carby diet 40g a day as recommended.

JaclynB profile image
JaclynB

Yes your probably creeping into hyper mode. Would recommend alternating 100/100/88mcg for awhile and see if that helps. Sometimes it only takes a very little decrease to feel relief from the breathlessness.

Ninney2019 profile image
Ninney2019 in reply to JaclynB

Thank you, I'm having bloods done again in 3 weeks as only had them done 3cweeks ago... will know more then.

Marz profile image
Marz in reply to Ninney2019

... and the results were ?

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