Thyroid blood levels suddenly very high.

[Annjeo]

My sister's thyroid blood levels have increased, after 20 years of taking 75mcg Thyroxine (she had a full Thyroidectomy due to a goitre in 2001). She's been suffering AF and hot flush symptoms since January, as the Dr has gradually reduced the dose. Two days ago she started on 25mcg daily. Our query is how does this happen if the whole gland was removed years ago; what's causing the increase in hormone?

[Annjeo]

No you're right, she's testing every 4-6 weeks, but sadly my sister hasn't asked for the results in writing yet, she'll have to ask next time she goes. All we know at the moment is that they are "very high". I think she's been feeling so awful lately asking for a printout went completely out of her mind.

[Annjeo in reply to Annjeo]

I would just add my sister is 78 years old, hence me asking on her behalf as she's not comfortable writing in forums 🙂. Could this change be something that can happen with age?

Also, I should add that her symptoms started BECAUSE of the hormone increase in her blood and BEFORE the reduction in Thyroxine, not as a consequence of the reduction. Apologies, if my original post didn't make that clear.

[greygoose]

Which level was high? FT4 or TSH?

If it was FT4, how long a gap did she leave between her last dose of levo and the blood draw? Did she leave the full 24 hours? Does she always leave 24 hours?

[humanbean]

One horrible possibility that crops up on the forum occasionally is when doctors get completely muddled up and think that when TSH rises that the patient's thyroid hormones are "very high" and that dose should be lowered.

Of course, the higher TSH (a pituitary hormone) is the more likely it is that Free T4 and Free T3 (the actual thyroid hormones - although T3 is produced in various parts of the body, not just the thyroid) are low.

Getting copies of real results to find out what has been tested is absolutely essential.

[Annjeo in reply to humanbean]

Thank you, all. What's been said has given us something to think about and questions to ask. I wish I had thought to come here a few weeks back ☹

My sister takes her Thyroxine every morning irrespective of blood tests. We had no idea that she should withhold that days dose until after a test. Is this something that should be done before EVERY blood test for levels, even the annual test?

It might be when she has her next test, but as soon as we can get hold of the test results I will post them here. Again, many thanks for your time and advice.

[SlowDragon Administrator]

Your sister is legally entitled to printed copies of her 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 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.

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if been left on too low a dose of levothyroxine

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 .

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)

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

Come back with new post once you get hold of her results

[Annjeo in reply to SlowDragon]

Again, many thanks. I'm surprised that no one in the GP practice tells Thyroxine users not to take the tablets pre test, but maybe that's me being naive.

As Scrumbler has mentioned, despite taking her 75mcg dose for 20 years, all also hours or minutes prior any blood tests, her results have always been consistently normal until recently. Therefore, something must have changed irrespective of whether she's had the tablets before or after testing.

We can easily obtain printouts from our Surgery, though have never been offered online access, I'll ask if its available. I'll post once I have the figures.

[SlowDragon Administrator in reply to Annjeo]

Most GP’s have no idea about diurnal variation of TSH or to not take levothyroxine before blood tests

75mcg levothyroxine is a low dose. Only one step up from starter dose. Most people need somewhere between 100mcg and 200mcg (typically 1.6mcg per kilo of your weight ...approximately)

NICE guidelines

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.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Low vitamin levels are increasingly likely as we get older....then conversion of Ft4 to Ft3 gets worse and TSH often drops

[Angel_of_the_North in reply to Annjeo]

Does she take B vitamins or hair and nails supplements? They can give false test results if taken in the week before the test - it depends on the type of test the lab uses (and that might have changed)

[Annjeo in reply to Angel_of_the_North]

No she doesn't.

[Hennerton]

I have a feeling your GP has got it all wrong and should not have reduced her dose. The symptoms she is having are probably because she is horribly undermedicated and without a thyroid will soon become very ill. You need to get an urgent appointment to see all her past blood tests and ensure that the GP has got it right, as how she could be over medicated on 25mcg and no thyroid is beyond belief. Even her original dose was very low and the AF can just as easily be caused by low levels as by high ones.

Please make sure you understand the blood tests when you see the GP, so that you can argue the case. TSH being high in the reference range does not mean over medication but the complete reverse. It is free T4 and free T3 which tell the truth of how well she is medicated. Sorry to rant but I have no thyroid myself and feel horror at your sister’s predicament.

[Annjeo in reply to Hennerton]

Thank you.

We'll, hopefully have her test results by Monday, all being well. We live together, so I am monitoring her condition and if anything goes awry I'll get her medical attention. Just for information, she has now had 3 Drs at the surgery look through her results, so I am praying one of them would notice any error in treatment. That being said I won't rely that.

Grateful for your response.

[Hennerton in reply to Annjeo]

Unfortunately doctors are trained to look only at the TSH result and even then many get confused. I am not joking! The level of knowledge in GPs is truly abysmal. You and your sister must start to be her doctor and argue the case for a proper level of medication. When you have the results (ask for all copies) post them here for more advice.

[Annjeo]

Hi all, we've got hold of the blood results from my sisters Dr. They don't provide online access, but were very happy to provide printouts.

She's had 3 bloods taken so far plus her annual taken in August and the results are as follows:

AUG 2019 (Annual review)

TSH level = 1.3

Free T4 level =25.9

Recommendation, routine call with Dr, non urgent

Vit B12 = 567

Folate = 4.9

Ferritin = 21

NOV 2019

TSH level = 1.7

Free T4 level = 27.4

The results included a recommendation to reduce Thyroxine from 75 to 50mcg, which they did.

JAN 2020

TSH level = 2.9

Free T4 level = 25.1

FEB 2020

TSH level = 1.8

Free T4 level =28.2

Recommendation, routine call with Dr, non urgent.

Vit B12 = 417

Folate = 7.7

Ferritin = 18

She's now on 25mcg per day.

Except for the August ones they were taken around 6 weeks apart and she due another test in 4-5 weeks time. That said I will probably send for a private test before then, if you all feel its necessary.

Hope these make sense to someone. There are no B12, Folate or Ferritin for Nov and Jan.

[Annjeo]

Is anyone able to offer any advice on the figures posted above?