Help.: Hi all - I've not written for a while as... - Thyroid UK

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Terri66 profile image
20 Replies

Hi all - I've not written for a while as although not feeling 100% tickety boo, I've plodded along. I'll try to keep this short :) Last year my T3 was taken away from me by my Endo as it became blacklisted. I was also needing an arthroscopy which the anaesthetist cancelled a couple of times because my TSH was not 'in range' (it was suppressed, which I feel ok with). So, they messed around with my meds until they got the TSH to where they could do the operation (it was 5 - (0.27- 4.20). I obviously didn't feel great but after the op, restarted 125mcg of Levothyroxine. Fast forward to February this year, 2 stone heavier, so started an exercise regime at the gym, quite intense (3 days a week) but I feel I needed to try anything to get this extra weight off. Just had my bloods done (3 weeks into gym regime) and they have come back as:-

TSH 16.56 (0.27-4.20)

FT3 3 (3.1 - 6.8)

FT4 16.1 (11.0 - 25.0)

Endo has written to me to increase my Levothyroxine to 175mcg. Any thoughts/advice on this would be grand. Do you think it's the exercise or lack of T3?

Thanks in advance

Terri

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Terri66
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20 Replies
SeasideSusie profile image
SeasideSusieRemembering

Terri66

You are very hypothyroid with those results.

Your FT3 is currently below range (but not surprising) and exercising will deplete what little T3 you do have, so at the moment it would be advisable to cut out the exercise and stick to gentle exercise like walking, swimming, yoga, etc.

You very likely have poor nutrient levels as well, so it's advisable to test:

Vit D

B12

Folate

Ferritin

Post results when you have them and members will make suggestions to help if levels are low or deficient.

SlowDragon has information about what can be done when T3 prescription is removed, she may be able to tell you if there is anything you can do about this.

Terri66 profile image
Terri66 in reply toSeasideSusie

Thank you SeasideSusie for the reply and the advice, much appreciated. I'm sure I am due an MOT at the GP's for full blood count so I'll book in for that. Re the exercise, I think it's a case of me wanting to feel 'normal' and to keep up with people my own age, which I do but boy I suffer for it...... pride comes before a kna****ed body :)

Thanks again SS xx

anonymous45 profile image
anonymous45

Because your TSH is significantly elevated and T4 relatively low in range, I can understand the recommendation to increase T4 first and normalise fT4 to the top end of the normal range.

If your fT4 reaches 22-25 and your fT3 and TSH do not normalise also, then that is fairly conclusive of a requirement for T3 in addition to T4.

Whenever there is low fT3 as SeasideSusie pointed out, nutrient levels must be optimised.

Aside from the testable vitamins and minerals she listed, ensure your diet has adequate Selenium, Zinc, and Magnesium. Many patients with with hypothyroidism could benefit from additional Selenium (200-400% RDA) to support Deiodinase enzymes.

For optimal Vitamin D ranges, I recommend you check out the "Vitamin D council" website as there is a wealth of useful information there.

Terri66 profile image
Terri66 in reply toanonymous45

Brilliant, thank you for the reply/advice anonymous45. When I get the results of the vits and mins I'll take it from there, in the meantime I'll check out the Vit D council.

Thanks again.

Terri xx

SlowDragon profile image
SlowDragonAdministrator

Suggest you only increase Levothyroxine to 150mcg daily and retest this and vitamins 6-8 weeks after dose increase

Ask GP to test vitamin D, folate, ferritin and B12 these often crash right down when T3 is stopped

If you were originally diagnosed as having clinical need for T3 by an NHS endocrinologist it should not have been stopped

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also medics to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Helpful post

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

Debates in parliament

theyworkforyou.com/search/?...

Do you have Hashimoto's? Also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

humanbean profile image
humanbean in reply toSlowDragon

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Where can this statement be found?

Terri66 profile image
Terri66 in reply tohumanbean

Just had a look Humanbean and it's stated in the Shared Care agreement towards the end of the paper - see below. Mind boggling really as they let you increase to 5> before doing anything xx

Combination levothyroxine / liothyronine should not be used routinely in the management of hypothyroidism as there is insufficient population based clinical evidence to show that combination therapy is superior to levothyroxine monotherapy. As part of the overall holistic management of patients with hypothyroidism, NHS consultant endocrinologists may start a trial of combination levothyroxine and liothyronine in circumstances where all other treatment options have been exhausted.

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

humanbean profile image
humanbean in reply toTerri66

Sorry, I'm being dense. Which paper?

Terri66 profile image
Terri66 in reply tohumanbean

No problem humanbean - it's the second link that SlowDragon has shared, directly under the sentence that says "Also medics to test vitamin D, folate, B12 and ferritin"

Terri xx

humanbean profile image
humanbean in reply toTerri66

Thank you! :D

I was being dense - how embarrassing!

Terri66 profile image
Terri66 in reply tohumanbean

Ha ha humanbean :) :)

SlowDragon profile image
SlowDragonAdministrator

See from previous posts you have Hashimoto's

healthunlocked.com/thyroidu...

So are you on strictly gluten free diet?

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Terri66 profile image
Terri66 in reply toSlowDragon

Wow SlowDragon, what a lot of fabulous info. thank you :)

I am gluten free - but only for the last 2 months, I'd have to restart gluten to have the test done?

I'm almost sure I'm going to go for the Blue Horizon Thyroid 15 tests, as sometimes it's easier to pay than try to get the GP to request the bloods. My GP practice has become a managed practice so even harder to get to see someone.

Thank you all so much for the replies - they help to get another perspective on things. Much appreciated.

Terri xx

SlowDragon profile image
SlowDragonAdministrator in reply toTerri66

If you are already gluten free, don't bother going back on gluten to test for coeliac. (You would have to eat high levels gluten for 6 weeks) It's far more likely gluten intolerance than coeliac.

Have you noticed any difference in symptoms yet since cutting gluten out?

Very unlikely to need the reverse T3 test. Extremely expensive and doesn't tell you much

Most popular test is Thyroid plus 11 via Blue Horizon

Medichecks have offers on Thursdays - Thyroid plus ultra vitamin

Both are £99 as standard or £79 on offer

Come back with new post once you get results

Terri66 profile image
Terri66 in reply toSlowDragon

Thanks SlowDragon - I've ordered the 15, thought I was getting more for my money but maybe not :)

I'll share the results when I get them - thank you all again <3

SilverAvocado profile image
SilverAvocado

These terrible results make me wonder if when your T3 was taken they didn't give you a similar potency of T4 to make up for it :(

I'm sure you know that you're terribly undermedicated, and probably will need a number of dose increases to get yourself anywhere near on track.

Definitely don't do any heavy exercise, maybe none at all with results like this, as your muscles are very vulnerable without enough hormone. They certainly can't grow and strengthen which is the goal of exercise.

If I were on your shoes, going from feeling pretty well to absolutely dire, I'd be tempted to buy my own T3. Loads of people seem to be in this boat, and doctors almost expect people to buy their own.

When you ask is this the T3 or the exercise, I'd say probably both. I've started to believe that Increasing activity is the equivalent of a dose decrease (on the other hand, resting more is the equivalent of an increase). Of course if you had enough T3 you could probably handle the exercise, but I'm not sure any hypo person, especially one that doesn't feel 100% should be going on an intense routine. Build up gently, 10% or lower increase at a time, and be very watchful for increased symptoms.

Terri66 profile image
Terri66 in reply toSilverAvocado

Thank you for the reply SilverAvocado - my body does feel like it's been run over by a very big truck....twice :)

I have bought T3 in the past via America but it's getting increasingly more expensive. My endo did advise me that if I was going to Greece (which incidentally I was) that I should buy it there, but no luck, no pharmacy was stocking it :(

I think the big fluctuation started due to no T3 and reducing and increasing my Levo to try and get me into 'range' so I could have my knee op. I knew it was going to have a big knock on effect as I feel much better when TSH is really suppressed so when it went to 5,

I felt awful and now it's nearly 17....you can imagine. I will cut down on the exercise as I feel I'm fighting a losing battle until my meds, vits etc. are optomised. Thanks again SA.

Terri xx

SilverAvocado profile image
SilverAvocado in reply toTerri66

Thank you for your kind words :)

If you're finding it too expensive you could make a new post asking for sources, you may find there is a better place to get it.

Terri66 profile image
Terri66 in reply toSilverAvocado

Thanks again SA - I was wondering if the Endo would give me a private script to access it from somewhere in Europe - looked on the Thyroid Uk site and it seems to be a bit cheaper.

Terri xx

SlowDragon profile image
SlowDragonAdministrator in reply toTerri66

Private prescription enables access to cheap German T3

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