GP Issues Again With Levo Dose Reduction

[Flatdanny]

I am writing once again with regard to my mothers Thyroid situation. This has been going on for many years 🙄

My mother GP/GPs have been slowly reducing her Levo dose for years, saying she is over medicated. They are as usual focusing on her TSH bloods thinking because her TSH is below zero she’s over medicated and stating it’s dangerous and could cause heart issues. The usual nonsense many here have heard before from their GPs.

Since the start of the pandemic and all that went along with that, my mothers health has deteriorated. She now has Alzheimer’s which came on way too quickly. She had some age related memory issues but it got very bad over the last few years.

Due to my mothers poor memory I have been managing her meds for about a year now. The GP had her on 50mcg of Thyroxine which is a low dose. She was still having hypo symptoms and generally feeling awful. I did my own bloods multiple times and she needed an increase in dose. GP still insisted she did not and never asked her how she felt. Just focused on her TSH number… Anyhow once I had the bloods back I gave her a small increase in Levo. Went from 50mcg to 75mcg. She felt slightly better with the increase but continued to have hypo symptoms. (Always feeling cold and very tired and having to take naps in the day)

Now where we are at…. My mother was assessed at the memory clinic for her memory loss. As part of that they checked her thyroid. As usual did not do full thyroid panel so didn’t get a full picture of her actual thyroid hormone levels. They were concerned I had given her an increase in Levo and wrote to the GP…. She then had to have another blood test to check her sodium, which was/is low and thyroid. Once again they did not do full panel and just focused on the low TSH. Now once again saying she is over medicated.

GPs unfortunately just don’t understand any of this stuff and are following inadequate guidelines which really is causing a huge amount of suffering. I feel they should not be dealing with patients thyroid issues if they don’t have a full understanding of how to interpret bloods or get how the thyroid works. It’s just wrong.

So I am planning on another small increase in my mothers medication up to 100mcg becuase of her ongoing hypo symptoms. I feel the low sodium and likely cognitive decline is due to low thyroid hormones.

Just wanted to have you guys take a look at her latest bloods before I did anything.

Thanks 🙏

[SlowDragon Administrator]

Is anyone checking that she is actually taking her levothyroxine everyday and that she takes it on empty stomach and nothing apart from water for an hour after

Is she on any other medication.

Essential to test vitamin D, folate, ferritin and B12 levels too

Low B12 extremely common as we get older, especially if hypothyroid

Low B12 can cause confusion and memory issues too

Has she had thyroid antibodies tested?

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Flatdanny in reply to SlowDragon]

Thanks for the reply 🙂

I manage her meds now and have been for about a year because of her memory loss. I make sure she takes everything. She has am/pm pill box. Takes her thyroxine first thing on empty stomach but not 100% sure she waits an hour after taking her meds before she eats/drinks anything. She doesn’t take any other meds/supplements after her Levo till the evening.

Only other things she takes are, Sertraline (SSRI) and vit D/K2 and methylated b complex 4 days per week.

Just did these bloods same time I did thyroid….

Folate: 9.1

Active b12: 149

Ferritin: 114

HB: 143

Vit D: 203

* I think she had thyroid antibodies done in the past and were negative. Think GP did them years ago.

Thanks.

[Flatdanny]

Anyone else here think she doesn’t need an increase in her medication?

[Lalatoot]

Setraline can affect the absorption of levo so those on setraline sometimes need a slightly higher dose of levo to compensate. Setraline affects the levels of serotonin. Much of our serotonin is in the gut so setraline alters gut function which in turn affects how other meds are absorbed.

If those were my results Id be trying a small increase of levo. Something like an extra 25mcg twice a week.

[Flatdanny in reply to Lalatoot]

Thanks for the reply and info. I didn’t know that the SSRI cause an issue with absorption. I known it can cause low sodium but not absorption issues. I’m not a fan of SSRIs personally and not happy the GP gave my mother it years ago. She didn’t even know she was on an antidepressant!

[pennyannie]

Hello Flatdanny :

We generally feel best when the T4 is in up towards / in the top quadrant of it's range as this should convert to a decent level of T3 at around a 1?4 ratio - T3/T4 :

Currently with a T4 at just around 20 % through the range there's little there to support additional conversion to T3.

When T4 is low in the range the body compensates by protecting T3 at the expense of T4 and why we see this disproportionate T3/T4 reading/ratio.

I do think it's worth increasing her T4 to enable her body to function better on thyroid hormone replacement.

Her TSH will likely disappear or register at 0.01 - but as long as her T3 and T4 are in range it is not a problem - though doubt your doctor would agree.

Without ranges - can't say much just that I now aim for a ferritin at around 100 : folate around 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D around 100 :

[Flatdanny in reply to pennyannie]

Thank you for the reply and info. Much appreciated 🙂 I also feel she would benefit from a small increase so will do so. GP will most likely not be happy but I’m not concerned what they think, I’m only concerned about my mother’s wellbeing.