Negotiating over dosage with doctor

[firearcade]

Hi all, I'm after some advice ahead of a phone call with my GP this evening.

I am relatively new to trying to manage my mild thyroid condition and we have yet to find the right dose of levothyroxine. In November it was increased from 25 to 50mcg and I felt very well, but the blood test results in January suggested overmedication. They were:

Serum TSH <0.01 (range 0.27 - 4.2)

Serum free T4 25 (range 11-21.2)

Serum free T3 7.8 (range 3.1 - 6.8)

We reduced my dose back to 25 mcg and my results last week were:

Serum TSH 0.22 (range 0.27 - 4.2)

Serum free T4 17.3 (range 11-21.2)

Serum free T3 7.1 (range 3.1 - 6.8)

So moving in the 'right' direction. The problem is I feel absolutely rubbish - very tired, lots of water retention in my stomach and feet, skin worsening... just generally unwell. I'd like to argue to go back up to 50mcg again and give it 6 months or so to settle - does that seem right? Does anyone have any advice for arguing this with a GP? Thanks as always for the advice.

[GlowCoach Administrator]

Thats a very low dose to get results like that. Do you have positive antibodies or have they been tested even?

How did you take the test? When was last Levo before test? What time was it and did you fast?

You may well have low vitamin levels, they don't need to be absolutely below range to have unpleasant symptoms. Get GP to test ferritin, folate, B12 & D3.

[firearcade in reply to GlowCoach]

Thanks for the reply, I've taken each test at hospital first thing in the morning and just over 24 hours after the last dose without eating or drinking anything yet that morning.

I privately ordered Thyroglobulin Autoantibodies testing which came back high in August 2021 - 217.8 ku/l (range 0-115), before I had started any treatment. This was retested by my GP in October 2022, after 3 months on levothyroxine, and was normal - <15 u/ml (range 0-34).

Will ask GP about those vitamin tests!

[firearcade in reply to firearcade]

Might also help to say that my underactive thyroid has always been mild - at it's highest my TSH was 8 and bounced around between 7 and 8 for a couple of years before I started medication. The decision to start medication was driven by fertility issues.

[GlowCoach Administrator in reply to firearcade]

I think you're in the early stages of Hashi's with those positive antibodies. This article talks about TPO antibodies but the same goes for TGabs. thyroidpharmacist.com/artic...

You may previously have had a Hashi 'swing' meaning your output went down temporarily before recovering. This will continue for some time but clearly even a small amount of levo is sending you over range. I wouldn't want an over range FT3.

One things for sure and thats low stomach acid which means we can't absorb vitamins from food properly. Best to keep on top of those as can cause multiple symptoms in themselves.

Have you tried a gluten free diet?

[firearcade in reply to GlowCoach]

Thanks this is really helpful, is there any way to control the swings? I tried a gluten free diet before starting medication and didn't find that it made any difference unfortunately to either my symptoms or my levels. My relatives with Hashi's suggested a dairy free diet might help but really trying to avoid that if possible...

[GlowCoach Administrator in reply to firearcade]

Unfortunately theres no way to control the swings and they can go on for a few years. All part of the thyroid being slowly destroyed.

Foods that Hashi people can be sensitive/intolerant to: gluten, dairy, soy, processed foods, sugar/carbs, some FODMAPs. You can only know which ones affect you by eliminating them for a few months.

[SeasideSusie Remembering in reply to firearcade]

firearcade

I privately ordered Thyroglobulin Autoantibodies testing which came back high in August 2021 - 217.8 ku/l (range 0-115), before I had started any treatment. This was retested by my GP in October 2022, after 3 months on levothyroxine, and was normal - <15 u/ml (range 0-34).

When you did your private antibody test, was it just Thyroglobulin antibodies alone that was tested or did you also have Thyroid Peroxidase antibodies tested?

The test your GP requested was not Thyroglobulin (Tg) antibodies, it was Thyroid Peroxide (TPO) antibodies.

Your GP can request TPO antibodies (which has a reference range of <34) but Tg antibodies (which has a reference range of <115) wouldn't be tested at primary level. The reference ranges alone tell us that they were different antibodies that were tested.

[firearcade in reply to SeasideSusie]

Oh yes that makes sense, I'm copying results off the patient access website so they must have mis-labelled it. When I went private they also tested Thyroid peroxidase antibodies which were normal then too - level 10 kIU/L, range <34. Sorry to ask the silly question but does it matter that one is negative and positive?

[SeasideSusie Remembering in reply to firearcade]

The NHS tend to only look at TPO antibodies where underactive thyroid is concerned, Tg antibodies can be raised in Graves disease and thyroid cancer although they can also be raised when Hashimoto's is present. Hashimoto's (autoimmune thyroid disease) is the most common cause of hypothyroidism.

It is possible to have a negative result for TPO antibodies but a positive result for Tg antibodies and have Hashimoto's. Article showing Tg antibodies associated with Hashi's: pubmed.ncbi.nlm.nih.gov/303...

It's the hypothyroidism that's treated, there is no treatment for Hashi's.

Hashimoto's which is where the immune system attacks the thyroid and gradually destroys it.

Fluctuations in symptoms and test results are common with Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. It would be best to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.