Thyroxine and TSH: I have been diagnosed with UAT... - Thyroid UK

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Thyroxine and TSH

Happygirly profile image
10 Replies

I have been diagnosed with UAT and am currently having dose increases after every 6-8 week blood test.

11/2/21 TSH was 10.1 range 9.38-5.3 (FT4 was 8) so was started on 25 mcg Levo every other day

29/4/21 TSH was 9.03 (FT4 was 8 still) upped to 25 mcg every day

29/6/21 TSH now 7.47 no FT4 tested. I have to phone the GP tomorrow but on these results, it’s going to take a looong time to get my TSH down enough to feel well again!

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Happygirly
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SeasideSusie profile image
SeasideSusieRemembering

Happygirly

There are two ways the guidelines say to start Levo:

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.

1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.

So assuming that you're not a child, not over 65 and don't have heart disease, you could either have started on the dose by weight, which doesn't suit everyone as it's often a high starting dose, or go the more gradual route of starting at 50mcg per day (25mcg if over 65 or have heart disease), then increase after testing every 6-8 weeks.

Is there any particular reason, apart from possible ignorance, why your GP started you on such a ridiculously low dose of 12.5mcg per day?

I would push for an increase to 50mcg now and retest again in 6-8 weeks when no doubt another increase of 25mcg will be required.

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. TSH is useful for diagnosis but once on thyroid hormone replacement it's the FT4 and, more importantly, the FT3 that tell us what we need to know, these are the thyroid hormones, TSH is a pituitary hormone.

Good luck, I think you may need it in abundance with this GP :(

Happygirly profile image
Happygirly in reply to SeasideSusie

Thank you! I had a trial of 50 mcg thyroxine a couple of years ago at the same time I started HRT and was very poorly so was taken off both. They never actually got to the bottom of it personally I think my thyroid was going haywire possible under then over active,m before settling at under but I’m guessing my GP is being cautious in case it happens again. And I honestly don’t want to feel that ill again but at this rate it will take another year before I’m on the correct level. I’m desperate to lose weight, my hair is like straw and I am so tired all the time, I even fell asleep last week when I came home for lunch and my work phoned me to see why I hadn’t come back! I’m also on b12 and vitamin d which I’m short of although my levels are slowly going up.

SeasideSusie profile image
SeasideSusieRemembering in reply to Happygirly

Happygirly

I think my thyroid was going haywire possible under then over active,m before settling at under

Have you had thyroid antibodies tested? Swinging from overactive to underactive suggests that you may have autoimmune thyroid disease, known to patients as Hashimoto's which is where the immune system attacks the thyroid and gradually destroys it. Fluctuations in symptoms and test results are common with Hashi's. Raised antibodies can diagnose Hashi's.

I’m also on b12 and vitamin d which I’m short of although my levels are slowly going up.

Low nutrient levels and deficiencies are often a result of Hashi's as it can cause gut/absorption problems.

What are your current levels and what doses are you taking? There should be no reason for levels to rise slowly if on an appropriate dose. I increased my severe Vit D deficiency of 15 to 202 in 2.5 months by supplementing myself. I now use a maintenance dose to keep it at the level recommended by the Vit D Society and Grassroots Health, i.e. 100-150nmol/L although I do keep it at the upper end of that range.

Have Ferritin and Folate also been tested?

Happygirly profile image
Happygirly in reply to SeasideSusie

Thank you for the reply. Yes I do have raised antibodies, last June they were 156 (0-30) but my GP has never commented on that. My B 12 in January was 157 (180-900) so I was put on B12 tablets 50 mcg 3 times a day and this was tested again June and now is 233 which is marked as satisfactory, no further action. Serum folate level in January was 14.1 (3.1- 19.9) and has just been retested at 24.8 (3.1-19.9) I have a gp appointment on Tuesday to discuss my latest results. I really am desperate to feel better and lose some weight, I’m doing everything I can and it’s not shifting at all, so frustrating. Also the tiredness is a struggle, I am literally falling asleep every time I sit down, sometimes I don’t even realise I’m asleep until I hear my daughter telling me off!

SeasideSusie profile image
SeasideSusieRemembering in reply to Happygirly

Happygirly

Yes I do have raised antibodies, last June they were 156 (0-30) but my GP has never commented on that.

The raised antibodies confirm autoimmune thyroid disease, known to patients as Hashimoto's. This is where the immune system attacks and gradually destroys the thyroid.

Fluctuations in symptoms and test results are common with Hashi's.

When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted slightly at these times if necessary, but will need readjusting when hypo symptoms return.

Unless a GP knows about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.

Hashi's isn't treated, it's the resulting hypothyroidism that's treated. Hashi's is the most common cause of hypothyroidism yet many doctors know very little, if anything, about it and often dismiss antibodies as being of no importance.

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 so this is likely to be the reason your B12 is so dire and why your Vit D is (was) low.

How much D3 are you taking? Is it prescribed?

You also need Ferritin testing, chances are that could be low as well and we need optimal nutrient levels for thyroid hormone to work properly.

My B 12 in January was 157 (180-900) so I was put on B12 tablets 50 mcg 3 times a day

Were you tested for B12 deficiency and Pernicious Anaemia. If not that is diabolical. With a level so far below range I would have thought B12 injections were a given.

this was tested again June and now is 233 which is marked as satisfactory, no further action.

Rubbish! Not satisfactory at all. Still extremely low.

Do you (or did you) have any signs of B12 deficiency, check here

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If so then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia and take no more B12 or folic acid or folate or B Complex or any supplement containing folate until further testing has been done.

SlowDragon profile image
SlowDragonAdministrator

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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 to.

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)

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

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

List of private testing options

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

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

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...

HashiFedUp profile image
HashiFedUp

Keep going with the increases until your T4 and T3 are about 75% up through the range. Sometimes GP’s stop your increases when your TSH drops slightly into range. But this is not always good! Be governed by how you feel and read up on the subject extensively so you can challenge your GP. As you will probably need to at some point!

Happygirly profile image
Happygirly in reply to HashiFedUp

Thanks, i have never had my T3 tested I don’t think, my T 4 hasn’t budged up at all.

It can take a long time to find the right dose for you. I am a year on from diagnosis and only just feel properly human again. I still think I'm not quite optimal but well enough for now.

Don't be discouraged; you won't feel rubbish and wake up feeling incredible overnight. It is a slow burn and you will find in 6 months time you're so much better than you were and again in another 6 months.

You're on the right path and that's the most important thing. :)

Happygirly profile image
Happygirly in reply to

Thank you, very encouraging as I feel like an old lady right now (I’m 52) and even things that I would have done with ease before seem like a struggle.

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