T3: I have lived with thyroid disease for 2... - Thyroid UK

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Tessica profile image
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I have lived with thyroid disease for 24 years and my GP has treated this with Levothyroxine. I have hashimotos and in recent years I have felt permanently unwell. My recent bloods were abnormal as they have been frequently and GPS at my surgery don’t know how to treat. Been referred to Endo but it will be 6 months before I get an appt. Have only seen an Endo once and I asked him if he could give me natural thyroid meds to try but he refused saying they are dangerous. So I know I will be refused again. I have been diagnosed with fatty liver ( I don’t drink) and I have high cholesterol. I had my gallbladder removed. I am sure this is related to my under treated hashis. From reading other threads it seems that many of you buy T3 from abroad and self medicate. So I can understand how this works could you please message me to explain how this works and what costs are. I am nervous about doing this but feel as though this illness thing will really affect my lifespan ☹️☹️Thank you for your help in advance.

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Tessica
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SeasideSusie profile image
SeasideSusieRemembering

Tessica

You shouldn't take T3 unless you know that you need it.

The reason for needing T3 would be if you don't convert T4 to T3 well enough. T4 is a storage hormone which converts to T3 which is the active hormone that every cell in our body needs.

To know if you convert well enough you would need to test TSH, FT4 and FT3 at the same time. If FT4 is high and FT3 is low that suggests poor conversion.

However, we need optimal nutrient levels for thyroid hormone to work properly and to aid conversion so before taking T3 it's essential to also test:

Vit D

B12

Folate

Ferritin

Low nutrient levels are very common when Hashi's is present.

If you post your results, with reference ranges (they vary from lab to lab) for all those tests, members will help.

Tessica profile image
Tessica in reply toSeasideSusie

Thanks I will post tomorrow. I think I have already posted but will check again

SeasideSusie profile image
SeasideSusieRemembering in reply toTessica

You posted results for TSH and FT4 four months ago here:

healthunlocked.com/thyroidu...

But to know if you need T3 you need current results for all those tests I mentioned above.

Tessica profile image
Tessica in reply toSeasideSusie

Please see my reply to Slowdragon

SlowDragon profile image
SlowDragonAdministrator

Before considering adding any T3 is essential to get FULL Thyroid and vitamin testing.

How much Levothyroxine are you currently taking?

Do you always get same brand of Levothyroxine at each prescription?

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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

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)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

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

What vitamin supplements do you currently take?

Extremely important to get these four vitamins optimal BEFORE starting on T3

This helps improve conversion

Also as you have Hashimoto's 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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

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...

Fatty liver linked to still being hypothyroid. So this suggests you are under treated and/or poor converter of FT4 to FT3

endocrineweb.com/profession...

High cholesterol levels linked to being hypothyroid too

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Again you might just need to get higher dose Levothyroxine and optimal vitamins. Or may need addition of small dose of T3. But getting Levothyroxine dose high enough and vitamins optimal is first step

Trying strictly gluten free diet helps thousands of Hashimoto's patients

Tessica profile image
Tessica in reply toSlowDragon

I have lots of old results.

TSH range 0.27 /4.2

9/7/19 5.87

28/6/19 12.44

26/2/18 2.30

22/1/16 13.42

Free T4 range 12-22

9/7/19 21

28/6/19 21.

22/1/16 18.3

14/10/13 19.8

9/8/99 23 (range 10-26)

FreeT3 range 3.2-6.8

9/7/19 3.4 (GP has only tested this once)

Ferritin range 15-300

17/4/18 205 (GP only tested once)

Thyroid Perox range 0-49

22/1/16 94.

I followed strict gluten for about 8 weeks earlier this year. I felt no better and pain and all other hypo symptoms continued.

I had read that many people in other countries are routinely offered T3 to assist with symptoms so hence my question asking people to PM me with info on where I can obtain this drug to trial it. I am fed up with feeling so unwell. I am sure my Endo appt in Jan will be of no help.

SeasideSusie profile image
SeasideSusieRemembering in reply toTessica

Taking your most recent results:

9/7/19 - TSH: 5.87 (0.27-4.2)

9/7/19 - FT4: 21 (12-22)

9/7/19 - FT3: 3.4 (3.2-6.8)

There is some anomaly between our TSH level and your FT4 level. Normally one would see a low TSH with FT4 so high in range. However, historically you seem to have had this all along which begs the question why?

Do you always do your tests as advised here:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).

[These are patient to patient tips which we don't discuss with doctors or phlebotomists.]

The aim of a hypo patient generally, when on Levo, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

22/1/16 - Thyroid Perox: 94 (0-49)

This result confirms Hashimoto's. I don't know whether an 8 week trial of gluten free is enough, SlowDragon knows much more about Hashi's than I do.

Hashi's could have something to do with your strange results for thyroid function test.

17/4/18 - Ferritin: 205 (15-300)

This is on the highish side but well within range so wouldn't raise any question for your GP. For females a good level is said to be 100-130. However; inflammation and infection can raise ferritin and Hashi's causes inflammation.

However, all nutrients should be tested for current levels, as mentioned, before considering T3. This is because they should be optimal before starting T3.

Tessica profile image
Tessica in reply toSeasideSusie

I have always fasted before having blood results and not taken Levo for 24 hrs. I always get an early morning appt. You mention the long standing irregularities between my TSH and T4 and this is why I am now concerned I don’t convert properly and should trial T3. Have suffered this for 24 years and have told GP so many times that Levo is just not working for me.

SilverAvocado profile image
SilverAvocado in reply toSeasideSusie

SeasideSusie, Tessica I have a friend with this pattern of blood tests:

TSH High

FreeT4 High

FreeT3 Low

It pops up occasionally on the forum. In my friends case it was from poor conversion for a long time.

Doctors find it very confusing, because of they look at TSH-only they say the Levo dose is too low and raise it, it they look at both TSH and freeT4 it makes no sense.

But Tessica, this isn't something strange about you, its doctors not looking at the full panel and knowing how to interpret blood tests :(

Tessica profile image
Tessica in reply toSilverAvocado

Thanks for your reassurance. No one at my surgery has a clue but been treating me for 24 hrs. Only since I got access to online records that I could see my bloods are odd.

SlowDragon profile image
SlowDragonAdministrator in reply toTessica

You need ferritin retested and folate and B12 need testing

Tessica profile image
Tessica in reply toSlowDragon

Thanks noted.

Tessica profile image
Tessica in reply toSlowDragon

I forgot my Vit D3 results.

2/3/18. 33.9

19/7/18 107 following a trial high dose of Vit D3 for diagnosis of parathyroid disease,

26/9/19 63.0 (currently taking Alfacalcidol With calcium to assist with calcium levels following parathyroidectomy.

SlowDragon profile image
SlowDragonAdministrator in reply toTessica

So you have had how many parathyroids removed?

Just one? Or more?

Was thyroid damaged during operation?

Vitamin D is still too low. Aiming to maintain st least over 80nmol (and 100nmol may be better)

How much Levothyroxine are you currently taking?

Do you always get same brand of Levothyroxine?

Do you always take Levothyroxine on empty stomach and then nothing apart from water for at least an hour after.

Tessica profile image
Tessica in reply toSlowDragon

3 glands removed. No damage to thyroid that I am aware of however ultrasound guy said it was extremely atrophied and commented I must have had a lot of health problems with it! I take Levo 125/ 100 on alternate days.I do get same brand. I take Levo on empty stomach am and wait one hour before a cup of tea. I also wait at least 4 hours before taking calcium. I have noted advice on D3 thanks.

SlowDragon profile image
SlowDragonAdministrator in reply toTessica

So you definitely have Hashimoto's (well technically Ord's Thyroiditis)

Strictly gluten free diet may need to be longer to see any benefits. Many of us notice immediate improvements. Others may only see slow reduction in TPO antibodies

An almost as high percentage find dairy free diet helps.

Suggest next step is to get folate and B12 tested and ferritin retested

Your high TSH despite high FT4 is odd

But clearly you are poor converter

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3

thyroiduk.org.uk/tuk/About_...

Roughly where in the UK are you?

Tessica profile image
Tessica in reply toSlowDragon

Am in Berkshire so can travel to London. Happy to travel further to see a good Endo. Thank you so much for your time and help.

SlowDragon profile image
SlowDragonAdministrator in reply toTessica

Will send you private message.

See speech bubbles top left of screen

jgelliss profile image
jgelliss in reply toSlowDragon

Great advice as always SD. I also experienced fatty liver and I'm sure it had to do with my not being well dosed . What I also found very helpful with the fatty liver was taking digestive enzymes with all the meals and HCl plus Phosphatidylcholine.

I feel that my being on T4 sole might have caused it since I'm not a good converter from T4 to T3 . Adding some NDT for my T3 mix made a huge improvement.

Tessica profile image
Tessica in reply tojgelliss

I also have fatty liver. I only have about 6 drinks all year! I’m sure hypo caused my need to have gallbladder removed. I had a private liver blood test a couple of weeks ago and my GGT result is far too high. Surely that can’t be due to being one stone overweight and eating chocolate and biscuits occasionally?

SilverAvocado profile image
SilverAvocado

Tessica, having seen your results posted above, you look like a classic candidate for needing T3.

My advice is to read the forum regularly and get more familiar with how self medication is done, reading blood tests, and how to introduce T3, what dosage you will start with, etc.

All of us are terrified when we start, it's a grave injustice that we are forced to treat ourselves because doctors won't help us. Over time, and especially because I've seen a huge improvement in my symptoms, most of the terror melts away. Although it can still be frightening engaging with the health system once we are outside it!

NataliAAA profile image
NataliAAA

My blood test results were the same as yours when I was on Levo. I was feeling as I was going to die. Now I am on NDT and I am feeling great. self medicated.

Tessica profile image
Tessica in reply toNataliAAA

Hi Natalia. Do you take T3 and Levo?

NataliAAA profile image
NataliAAA in reply toTessica

No I don't take T3 and Levo. I take NDT -natural desiccated pigs thyroid.

HashiFedUp profile image
HashiFedUp

Your endo can prescribe T3 so do it under their guidance. If not, or you don’t want to wait, pay for a private consultant, normally £150. They can say whether T3 or NDT is appropriate given your medical history. Ask for private a message on here and people will send you recommendations in your area for a good private endo.

Tessica profile image
Tessica in reply toHashiFedUp

Thanks for your help

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