Help and Advice please: Hi everyone, First... - Thyroid UK

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Help and Advice please

Shaun1290 profile image
11 Replies

Hi everyone,

First time posting on here but a lot of the information is very confusing. I am from the UK,diagnosed in 2019 with Hypothyroidism and subsequently placed on Levothyroxin.

Started low and has been increased now to 200mcg. I have been on this dose for a few months now and soon due another blood test.

I am also type 2 diabetic. Currently on a low carb diet recommended by my gp, and intolerant to cows milk, wheat and eggs.

I excersise about 2 hours a day,swimming and taking my dog for a walk.

My weight is increasing gradually and can't seem to lose any,especially when I am mostly eating salads and chicken for my main meals.

Doctors are saying my bloods results are improving and diabeties has dropped a lot too.

my current symptoms are fatigue, weight gain and I am at a loss as to why.

Has anyone else had a similar experience?

Could anyone advise me on what my next steps should be please? 🙏

Even a good place to start doing some research would be good too. I am planning to speak to my gp again soon but I just feel like they don't care and just increase my dose. I feel like the medication doesn't do anything,i will take it first thing in the morning and avoid food and other medicines until an hour afterwards.

11 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Shaun1290

Welcome to the forum.

Can you post your latest test results please, along with their reference ranges as these vary from lab to lab.

For a full picture you need

TSH

FT4

FT3

Thyroid antibodies if they have ever been tested

And optimal nutrient levels are needed for thyroid hormone to work properly so it's important to also test

Vit D

B12

Folate

Ferritin

Shaun1290 profile image
Shaun1290 in reply to SeasideSusie

Hi SeasideSusie

Thanks for such a quick reply,

I can try my best.. this is all the information I could find from my NHS app;

Serum free T4 level 16.8 pmol/L [11.4 - 21.4]

Serum TSH level 5.68 mlU/L [0.27 - 4.2]

Above high reference limit

There are other test results on there but they are more specific to Diabetes and Liver Function Testing.

Thank you 😊

SeasideSusie profile image
SeasideSusieAdministrator in reply to Shaun1290

Shaun1290

OK, so just the basic TSH and FT4 tests.

We always advise doing thyroid tests as follows :

* Test no later than 9am

* Nothing to eat or drink except water before the test

* Last dose of Levo 24 hours before the test

* No biotin or B Complex or any supplement containing Biotin for 3-7 days before the test as this gives false results.

You may not have done this test this way but beat in mind for future tests.

Your TSH is far too high although one would expect to see a lower FT4 with such a high FT4.

Nevertheless just looking at THS this showed the need for an increase and I expect that was when it was increased to 200mcg.

The aim of a treated hypo patient, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges, if that is where you feel well.

FT3 is rarely done at primary level but it s the most important test. We look at FT4 and FT3 and I tells us if we are converting T4 to T3 well enough, low T3 causes symptoms.

When are you due to retest?

SlowDragon profile image
SlowDragonAdministrator

soon due another blood test.

Make sure you test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Do you always get the same brand levothyroxine at each prescription

Has GP tested thyroid antibodies and vitamin levels?

What vitamin supplements are you currently taking

Shaun1290 profile image
Shaun1290 in reply to SlowDragon

Hi SlowDragon,

I say soon but not due until around late Sept.

So my 100mcg is "accord" which I now take 2 per day,

Previously I was on 175mcg so the same brand for the 100mcg and then "TEVA" brand for the 75mcg.

I am not sure if they have tested for antibodies or vitamin levels (I will be sure to mention this when I speak to my gp) and not taking any vitamin suppliments either.

Thank you for your support! 😊

Medication
SlowDragon profile image
SlowDragonAdministrator in reply to Shaun1290

Teva brand upsets many people

Accord is usually well tolerated

Also boxed as Almus via Boots or Northstar via Lloyds pharmacy

Northstar 25mcg is Teva

Always try to get same brand at each prescription

Suggest you get full thyroid and vitamin testing done yourself approx 8 weeks after dose change

Only do private testing early Monday or Tuesday morning, test before 9am and last dose levothyroxine 24 hours before test

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

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

Heller62 profile image
Heller62 in reply to SlowDragon

The optimal hormone dose in you will take longer to stabilise. After then, it may take several months before you start feeling better. I advise you to test your own thyroid and vitamin levels(vitamintree.ca/) about 8 weeks after changing your medication. It's advisable to check specific vitamin levels as well because your body needs to have optimal levels of them to use the thyroid hormone. You should wait to think about losing weight until after all of that is in place.

Jaydee1507 profile image
Jaydee1507

You've had some great advice ref testing etc.

What I will say is about the weight gain and not feeling better. So far, your TSH is showing you're still pretty hypothyroid, despite the treatment and increases in doses.

It will take a while longer to stabilise the correct hormone dose in you. Once that happens it can take a few months to begin to feel better.

It's best to check certain vitamin levels too, as these need to be optimised for your body to use the thyroid hormone properly. Once all that is in place, then you can think about losing weight, and not until then.

So for now, just eat sensibly according to your diabetes requirements and focus on getting the thyroid treatment right.

👍

Shaun1290 profile image
Shaun1290 in reply to Jaydee1507

Thank you so much for the encouragement! It has been very difficult especially when the doctors don't seem to care either, so very lucky for all the support I have received so far, thank you everyone 😊

pennyannie profile image
pennyannie

Hello Shaun and welcome to the forum :

The medication may well not be doing anything as T4 - Levothyroxine is a storage hormone that needs to be converted by your body into T3 the active hormone that runs all your bodily functions including your physical, mental, emotional, psychological and spiritual well being.

Non optimum levels of vitamins an minerals can compromise the conversion of T4 into T3 as can inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing - so there are various factors to the considered and obviously any other diagnosis and medication may have some bearing on when and how to take your medication.

First step is to arrange the relevant blood tests as detailed already -

it is where we all start off -

and then post the results and ranges in a new post and you will be talked through what it all means and advised of your next best step back to better health.

You might like to read up a bit and suggest you dip into Thyroid UK who are the charity who support this forum - thyroiduk.org

Shaun1290 profile image
Shaun1290

Hi everyone!

Thank you for all your advice last time, I went back to my gp with a list of what I wanted to be tested for and to my surprise she said yes, except for doing a test for the T3!

Here are my latest results if you would kindly be able to advise me please?

I've noticed a massive fluctuation in my TSH results (compared to last time).

I am still on 200mcg Levothyroxine. I haven't heard back from my gp yet following my results and what they could mean.

I followed your advice of no water or food before the test and no medication 24hrs before the test either, I also wanted to book in as early as I could however there were no morning slots so had to go for the 12pm one.

Latest blood test results (20th Sep):

Serum thyroid peroxidase antibody concentration 224 IU/mL; Thyroid (TPO) Ab Ranges

Negative < 25 IU/mL

Equivocal 25 - 35 IU/mL

Positive > 35 IU/mL

Serum free T4 level 17.3 pmol/L [11.9 - 21.6]

Serum TSH level 0.13 mIU/L [0.27 - 4.2]; Below low reference limit

Serum ferritin level 157 ng/mL [30.0 - 400.0]

Serum free triiodothyronine level 4.8 pmol/L [3.1 - 6.8]

B12/Folate Haematinic assays

If anaemic and MCV raised repeat in one week.

If still low suggest therapeutic trial of folate.

Serum vitamin B12 level 355 ng/L [197.0 - 771.0]

Serum folate level 2.8 ng/mL [3.0 - 20.0]; Below low reference limit

Previous blood test results (25th April):

Serum free T4 level 16.8 pmol/L [11.4 - 21.4]

Serum TSH level 5.68 mIU/L [0.27 - 4.2]; Above high reference limit

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