Why has my TSH increased after several years of taking the same dose of Thyroxine?

[IndigoRazzle]

Background - following RI treatment for an overactive thyroid I have been taking 75mcg Levothyroxine daily since 2015. At that time the consultant endocrinologist said that I should aim for a TSH of around 2. I have annual blood tests and the previous two years the readings have been 2.7 and 2.9 but the recent one is 4.79. I have suggested to my GP that my dose of Levothyroxine be increased to 100 mcg and to repeat the blood test in a couple of months, which she has agreed to. Just wondered if anyone has thoughts on why the TSH has gone up? I did have knee replacement surgery at the end of January so that decreased my activity for a while. No other changes of health or medication. All comments very welcome. Thanks.

[pennyannie]

Hello IndigoRazzle and welcome to the forum :

Were you diagnosed with Graves Disease and why you were treated with RAI thyroid ablation ?

Once on any form of thyroid hormone replacement it is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH.

By having had RAI thyroid ablation - the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH reading relies on working, has been broken, as now this circuit loop is not complete, as your thyroid was burnt out in situ and totally disabled.

You might like to read around Graves Disease and I found the most all encompassing research is that of Elaine Moore. elaine-moore.com

We generally feel at our best when our T4 is up in the top quadrant of the range as this should convert to a decent level of T3 at 60-70% through it's range.

T4 - Levothyroxine is a storage hormone and 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, your inner central heating system and your metabolism.

No thyroid hormone works well until your core strength vitamins and minerals especially those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

You might like to read further on all things thyroid on the Thyroid UK website who are the charity which supports this forum : thyroiduk.org

[IndigoRazzle in reply to pennyannie]

Thanks for your reply. I wasn’t diagnosed with Graves disease just a very overactive thyroid for a number of years and I had been taking Carbimazole for several  years before deciding to have the RI.  In 2016 I was suffering from post viral fatigue and had my vitamin levels carefully monitored by a Naturopath, Martin Budd, for a couple of  years so I think the vitamins you mentioned are all at optimal levels. Drs here are very reluctant to test T4 though when seeing Martin he did run private blood tests for me of T4 and T3.  I will ask if they will add at least the T4 test to my next blood test.  Might my recovery from the knee replacement surgery have affected my levels?

[pennyannie in reply to IndigoRazzle]

With any physiological stress ( emotional or physical ) inflammation, depression, dieting and ageing will down regulate T4 to T3 conversion.

So yes, most likely, your recent surgery will have impacted your conversion and when conversion, metabolism slows down the body has trouble extracting key nutrients through food, no matter how well and clean you eat, and why the core strength vitamins and minerals are also important co-factors in T4 to T3 conversion.

I know it is very difficult to even get the appropriate blood tests run in primary care and why I like many others on this forum choose to use private companies as detailed on the Thyroid UK website. and then post our readings and ranges on this forum for considered opinion as to the next best step forward.

I now am settled and take Natural Desiccated Thyroid and just run a yearly full thyroid panel to include the vitamins and minerals as it seems I need to supplement all of these on a regular basis in order to stay as well as I am.

I seriously regret RAI thyroid ablation back in 2005 but afraid I knew nothing and just trusted what I was told and it now seems my reservations are now founded.

ncbi.nlm.nih.gov/pubmed/306...

[SlowDragon Administrator]

you need to test TSH, Ft4, FT3

Thousands of Uk thyroid patients forced to test privately

Retest 6-8 weeks after increase in Levothyroxine

ALWAYS test early morning and last dose Levothyroxine 24 hours before test

Do you always get same brand Levothyroxine at each prescription

Test vitamin D, folate, ferritin and B12 at least annually

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...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.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...

most people when adequately treated will have FT3 at least 50-60% through range

Often Ft4 needs to be higher

TSH usually around or below one

[IndigoRazzle in reply to SlowDragon]

Thanks for links various private blood test labs.  I have tried home testing previously but have problems with that so it’s good to see that there are private hospitals that will draw blood, nearest one to me is about 50 miles, but could be done.  Yes I do have the same brand of Levothyroxine each time.  I cannot go for blood test until late morning due to a  fatigue illness coupled with low blood pressure so will faint it the blood is taken too early. Many thanks for responding and for all the information.

[pennyannie in reply to IndigoRazzle]

You could arrange for a nurse home visit to draw the blood for you and I believe between them, Medichecks and Blue Horizon cover the country with this additional, add on service.

Obviously it cost a little more but I find it the least stressful of all the options as I live in a rural area with little public transport.

[IndigoRazzle in reply to pennyannie]

I am down the very tip of Cornwall, near Lands End but looks like the private hospital at Truro have a blood draw service, but will also look at the nurse coming to me option as that woild be less stressful (hate having blood taken!) Thanks for advice.

[pennyannie in reply to IndigoRazzle]

Medichecks cover Cornwall as I too am in Cornwall - between Truro and St Austell :

[SlowDragon Administrator in reply to IndigoRazzle]

Fatigue is the most common symptom of hypothyroidism

Low blood pressure suggests adrenal exhaustion, common when not on high enough dose levothyroxine

TSH would usually be around or under one when adequately treated

Essential to test vitamin levels as well as thyroid

[IndigoRazzle in reply to SlowDragon]

I did have extensive adrenal testing when I first had Chronic Fatigue in 2017 and all was fine. Need to have my TSH at around 2 to protect my bones as I have osteopenia . Vitamin levels all checked not long ago and I think probably the suggestion that the stress of my knee replacement surgery has affected the thyroid is correct. I’m upping my dose of Levothyroxine and will get the bloods redone in a couple of months. I actually feel very well, was just curious as to why the TSH had gone up but seems maybe surgery is the reason. Thanks for input and advice. Also have had low blood pressure my whole life, since a child.

[pennyannie in reply to IndigoRazzle]

After reading up on the consequence of taking RAI - I started supplementing adrenal glandular as RAI is known to be taken up, to a lesser extent, by other glands and organs within the body.

After reading up further - Your Thyroid and How to Keep It Healthy by Dr Barry Durrant-Peatfiled I started another learning curve on my understanding of body physiology and how important the adrenals are as they work in tandem with the thyroid and pick up the slack when the thyroid fails.

I eventually was referred back to endocrinology at Treliske where some 12 years earlier my RAI treatment was actioned and offered a Short Synacthen Test which proved nothing and told ' I was ok ' according to the NHS.

but I already knew this would happen as I had read that this test is not sensitive enough and basically only suited to people suffering with Addison's Disease.

The method in my madness at this point time, was to get to ' tick a box ' and know I wasn't suffering with anything worse than I thought.

I now self medicate and have my life back :

[IndigoRazzle in reply to pennyannie]

You’re in Cornwall as well! I was in Hampshire when going through diagnosis and also had the standard adrenal tests but with the help of a friend who is a nutritional therapist and Martin Budd, a naturopath, I did my own tweaking of supplements etc. Trouble is so often the NHS says 'within range' when actually it’s more important to have optimum levels of vitamins etc, not simply be in range. I have learned both with my thyroid problems and the chronic fatigue that you have to become your own expert, and also be quite demanding when necessary. I always get all my results and have them going back many years which has been useful.

[SlowDragon Administrator in reply to IndigoRazzle]

TSH has nothing to do with bones

Most important thing is that Ft3 level is not too low or too high

thyroidpatients.ca/2018/07/...

Plus essential to maintain good levels of vitamin D and magnesium

[IndigoRazzle in reply to SlowDragon]

No TSH level doesn’t but overactive Thyroid does affect bones. I was extremely overactive for many years, readings of 0.02 TSH.

[pennyannie in reply to IndigoRazzle]

A TSH reading seen is isolation mean nothing at all -

do you have your Free T3 and Free T4 readings at diagnosis -when you had a thyroid - before RAI thyroid ablation - at the very beginning ?

Surely there must have been an antibody blood test run and a diagnosis made as to why you were unwell and why you needed to drink this toxic RAI substance as a treatment ?

[IndigoRazzle in reply to pennyannie]

When I was diagnosed as overactive in 2009 I had been having TSH reading of 0.01 to 0.03 for several years, with T4 around 9-12 and T3 5ish.  I felt ghastly - heart thumping hard, felt faint, wired.   I was initially put on Carbimazole which helped for a while but was erratic with other side effects.  I was offered RI and thought hard about it for several  years but decided to have in November 2014.  I don’t remember having antibody tests only a scan to look at the Thyroid gland to check for Thyroid cancer.  When I became ill with Chronic Fatigue in 2016 I was convinced there was a link to the RI, but it was too late by then.  I have actually felt pretty well the last 4 years but still not sure if the RI was the right decision.  

[pennyannie in reply to IndigoRazzle]

Well whether it is or whether it is not - we are where we are and dealing with unforeseen health issues - all we can do is read up and become our own best advocate and hopefully relieve some symptoms that are compromising our health and well being.

[IndigoRazzle in reply to SlowDragon]

interesting article, thanks. Will get a private T3 T4 test done

[SlowDragon Administrator in reply to IndigoRazzle]

strongly recommend getting full thyroid and vitamin testing annually

Test early Monday or Tuesday morning, last dose levothyroxine 24 hours before test

Stop any vitamin supplements that contain biotin 5-7 days before all tests

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...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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