Help required please

[Brooksi3]

Hiya. My husband has heart failure, medication gave him an overactive thyroid, but he now has an underative thyroid. He has high sugar from diabetes and even though he hardly eats, still can't shift any weight. He struggles to breathe, can't sleep and feels like he's choking. He has good days, but mostly bad days. Are these symptoms caused by hypothyroidism? Is there any other way I can help him (He's taking 100mg of Levothyroxine a day) He has regular blood tests, but no other info is available. Thank you for your help.

[Buddy195 Administrator]

Welcome to the forum Brooksi3,

The first thing I would recommend is for you to phone your GP surgery & ask for a print out of all thyroid blood tests/ other recent tests and then post those results on the forum. (You can start a new post if results take a day or too) It’s important you post the ranges, as labs use different ranges. With this information, members will be better able to advise you & your husband.

How was your husband diagnosed initially over active.... was this through antibody tests or on thyroid bloods plus symptoms? The reason I ask is that I was initially diagnosed with Graves Disease (overactive) and had ‘hyper symptoms of tremor, anxiety, weight loss & palpitations, but antibodies actually show Hashimotos (underactive). Actual thyroid blood results and antibody tests are really important.

How long as your husband been taking 100mcg Levo? I think this is quite a low dose for a male.

Key vitamins are also really important; ferritin, folate, B12 and Vit D. Has your husband been tested for these? Please don’t supplement without testing these first. Many members test thyroid bloods and key vitamins privately.

I’m sure other forum members will be along soon with useful information & links to follow. I’ve learned so much from this forum & feel so much better for following advice & suggestions from fellow members. Rest assured, there is a wealth of information & support here! 😊

[Brooksi3 in reply to Buddy195]

Thank you Buddy. Wow there is so much to take into consideration. He was diagnosed when he had blood tests to check thyroid and liver function because he was taking strong heart failure medication. He's stopped taking them now and he's now underative. His gp isn't really interested, that's why I thought I'd try myself. I'll get back onto him and find out his results. Thank you again Buddy

[Buddy195 Administrator in reply to Brooksi3]

Do post results when you have them! 👍

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

Your husband is legally entitled to printed copies of his blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested

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 cause is autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Low vitamin levels common as we get older too

Ask GP to test vitamin levels

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 .

Does he always get same brand of levothyroxine at each prescription?

Many people find different brands are not interchangeable

When testing thyroid levels

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)

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[SlowDragon Administrator]

How much does your husband weigh approx in kilo

100mcg is likely low dose for a bloke

He struggles to breathe, can't sleep and feels like he's choking.

These symptoms suggest under medicated, perhaps low iron/ferritin too

Insomnia often when under medicated and/or low vitamin D

guidelines on dose levothyroxine by weight

Even if we frequently 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 eventually on, or near 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.

Also here

cks.nice.org.uk/topics/hypo...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more...... some less

healthunlocked.com/thyroidu...