Blood results and thyroxine dose query - Thyroid UK

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Blood results and thyroxine dose query

mle121 profile image
11 Replies

Hi all, I was diagnosed with Hashimottos last year and since then been trying to find my optimal dose of Thyroxine. In April my TSH was 6.0 (reference range 0.27-4.20), my GP wanted to keep me on 75mcg but because I was still out of range and symptomatic I asked to be increased so I went up to 100mg. I had another blood test last week and my result is 0.1, my GP therefore wanted to put me back to 75mg but as this is first time I have had some improvement in symptoms she has agreed to keep me at 100mcg and re-test in another 8 weeks. My questions are:

1. Why have my results swung so dramatically the other way when previously I have only seen small differences in results with each dose increase?

2. I had Covid the week before blood test so could that have had an impact on my results?

3. Is it detrimental to stay on too high a dose of Thyroxine?

4. I was thinking of getting a private test in about 4 weeks to see what my FT3 and FT4 are doing as I thought that might be helpful on deciding treatment dose, is that a good idea?

Thank you for you any advice you can give.

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11 Replies
SeasideSusie profile image
SeasideSusieRemembering

mle121

It could very well be a hyper phase of Hashimoto's. Presumably you know that with Hashi's levels and test results fluctuate with Hashi's activity.

Was TSH all that was tested? You really need FT4 and FT3 tested as well. Don't let GP reduce dose based on TSH alone, refuse unless FT4 and FT3 are tested.

If it's a hyper phase of Hashi's and you get symptoms and raised FT4/FT3 along with your low TSH, then reducing your dose temporarily during this phase may help, but don't have your prescription altered because once it's reduced you may find it very hard to have it increased again.

Also acute infection can mess with thyroid levels so Covid might have something to do with it.

mle121 profile image
mle121 in reply to SeasideSusie

Thank you for your speedy response. I did not know that Hashi levels could fluctuate so that is very interesting to hear. How do I know if I am having a hyper phase when have no hyper symptoms? Yes TSH was all that was tested. I am aware that it isn't always easy getting an increase in dose hence why I was resistant and for first time symptoms improved.

SeasideSusie profile image
SeasideSusieRemembering in reply to mle121

mle121

Some general information about Hashis:

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.

How do I know if I am having a hyper phase when have no hyper symptoms?

I don't have Hashi's so have no personal experience.

Hashi's is where the immune system attacks and gradually destroys the thyroid. After every attack, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of thyroid hormone to go well over range - depending on reference ranges FT4 maybe to around 30 something and FT3 around 11/12 and the TSH reduces to suppressed. I would imagine that you would get hyper type symptoms or symptoms of overmedication when this happens.

However, you can still have a low/suppressed TSH with in range FT4/FT3 if the pituitary isn't working correctly so it's very important to test TSH, FT4 and FT3 all together, although doctors don't seem to understand this.

mle121 profile image
mle121 in reply to SeasideSusie

Thank you very much indeed for all this info. My diet is already quite restricted so trying to eliminate gluten as well is going to be tricky but it will be interesting to see the results of a coeliac screen and maybe trying a short spell of elimination to see if it makes a difference. I will do some research from all the useful links you have sent me. Thank you again.

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine were you taking on 75mcg

Are you now taking a different brand

ALWAYS test thyroid levels early morning, ideally before 9am, and last dose levothyroxine 24 hours before test

Is this how you do your tests

Have you had vitamin D, folate, ferritin and B12 levels tested yet?

Low vitamin levels are EXTREMELY common with Hashimoto’s

Request these vitamins are tested now

Or test privately

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Covid could have affected results

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

If Ft3 is not over range you’re not over medicated

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

Recommended on here that all thyroid blood tests early morning, ideally before 9am 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...

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/

Suggest you test vitamin D now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

mle121 profile image
mle121 in reply to SlowDragon

Hi, thank you for such a quick reply. I have no idea what brand I was on before or if same as now. I have always had my bloods done before 9 and last dose 24hrs before. I have never had anything else tested except FT4 and antibodies at diagnosis and when I asked for more my GP said TSH is all that was required, but I have read enough posts to know that this is a common occurrence and that private testing is probably only way to go to get all the results I need. Thank you for info re FT3 result to know if over medicating. I will get a private test done then in a few weeks and post results then I can see where to go from there.

helvella profile image
helvellaAdministratorThyroid UK in reply to mle121

Suggest you always make a note of what products you get.

Despite the official line being that all levothyroxine products are equivalent (at the same dosage, of course) that is simply not true for all patients across all products.

mle121 profile image
mle121 in reply to helvella

OK thank you, I will start to take note.

SlowDragon profile image
SlowDragonAdministrator in reply to mle121

Look at packaging of current levothyroxine

Either request vitamin levels tested by GP

Or test privately

GP should do coeliac blood test at diagnosis of Hashimoto’s

Have you had coeliac test done?

Get tested BEFORE considering trial on strictly gluten free diet

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Asmm2766 profile image
Asmm2766

May I suggest that in addition to getting Free T4 and Free T3 tests, get a reverse T3 test. In about I believe 15% of thyroid patients, their bodies make large amounts of Reverse T3, which will then fill up Free T3 receptors so you aren’t getting the T3 body needs. I had this problem for years until I did my own research. I was so sick my prayer was, “God fixing or take me. Either was ok with me.” Hopefully you won’t have to go through years of the wrong medicine like I did. My doctor for years only did the TSH test.

There’s a website and a book with the same name that helped me tremendously. I am not in any way affiliated with it but heard about it from the patient advocate in the thyroid specialist office I was in. It’s called, “Stop the Thyroid Madness”. I wish the same kind of miracle I have had. I have been on Time Released T3 medicine for years. Keep doing your research; trust your gut; and don’t quit 5 minutes before your miracle happens! Feel free to check my bio. There is more info there.

SlowDragon profile image
SlowDragonAdministrator

Reverse T3 is not worth testing, hardly ever, but especially at this stage

Extremely expensive test (has to be processed in USA) ….not generally recommended on here

Reverse T3 does NOT block T3 receptors….that theory has been debunked

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