Advice needed,please. Am on levothyroxine and m... - Thyroid UK

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Advice needed,please. Am on levothyroxine and mostly feel terrible.

HealthyEmski profile image
11 Replies

Hi all

Have been on Levothyroxine for over 3 years, currently 175mcg. I have Hashimoto's and anti tpo antibodies, usually over 1300 U/ml,which have not reduced. I am on gluten free diet.Recently, diagnosed with osteoarthritis.

I am wondering if combining T3 would help as have terrible brain fog, very tired, hair loss, dry skin, weight gain, mood swings, sometimes obsessive trivial thoughts come and go, no short term memory, aches on joints. I go through this every few months :after an increase of Levothyroxine I feel ok, things feel better, for example hair starts to grow back for a couple of months but then the above symptoms come back. It has been worse since 2018.

My gp doesn't do t3 or antibodies tests.

I was seeing a nhs consultant until last year.

Test results

Feb 2020:

Tsh: 0.22 (0.27-4.2)

T4:18.2 (12-22)

Magnesium:0.77 (0.7-1)

Calcium:2.26 (no range)

Dec 2019: no ranges

B12:802

Folate 10.2

Ferritin:93

Vit D: 104

Magnesium:0.89

Jan 2019: no ranges

Free Tri- iodothyronine: 5.6

Tsh:0.65

F4:17.9

Any thoughts would be appreciated.

Thanks

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11 Replies
greygoose profile image
greygoose

Impossible to tell if T3 would help you without seeing an FT4 and FT3 (with ranges) tested at the same time. It's difficult to tell anything from your results, because they're not complete.

I go through this every few months :after an increase of Levothyroxine I feel ok, things feel better, for example hair starts to grow back for a couple of months but then the above symptoms come back.

That is the nature of Hashi's, I'm afraid. Your thyroid is under attack by the immune system, and after each attack, hormone levels rise due to the dying cells dumping their stock of hormone into the blood, making you feel better. Then, that extra hormone is used up/excreted, and levels go down again, and symptoms come back. There's not an awful lot you can do about it.

A gluten-free diet makes some people feel better, due to them being gluten-sensitive. But, if you are only gluten-free to reduce your antibodies, there's really not much point. Even if you reduced them down to zero, you would still have Hashi's, and you would still have the swings between feeling better and feeling worse. The antibodies are just an indication that you have the disease, not an indication of its severity. But, have you tried taking selenium? That's supposed to help, too. :)

smilingjane profile image
smilingjane in reply togreygoose

And as we get older and the thyroid is practically gone because of the constant attacks does that mean the attacks lessen because there is nothing left to attack because the jobs done?

Sorry to hijack your post a little but this may interest you too Emski

greygoose profile image
greygoose in reply tosmilingjane

Yes, that's right. The less thyroid is left to attack, the fewer the attacks, the less jumping around of levels there is.

Lora7again profile image
Lora7again in reply togreygoose

What about this story about her liver being attacked. This is what worries me a lot because I have had raised liver enzymes in the past.

thyroiduk.org.uk/tuk/get_in...

greygoose profile image
greygoose in reply toLora7again

That story is rather confused, and I don't think the writer fully understands her conditions. She may indeed have Hashi's, and she may also have an autoimmune condition that affects the liver. But, the two are not as connected as she appears to believe.

It is true that if you have one autoimmune condition, there is a possibility that you may develop a second - or even a third or fourth - but one does not cause the other. It's just that you are someone susceptible to autoimmune conditions.

And, it certainly isn't her Hashi's antibodies - TPOab and TgAB - that are attacking her liver. Antibodies are highly specific. They do not attack indiscriminately. In fact, TPO/Tg antibodies don't attack anything. They just clean up after an attack on the thyroid, and are therefore an indication that you have the disease. What's more, 20% of Hashi's people never have over-range antibodies, but their immune system will still destroy their thyroid.

I think that article is very misleading. So, I don't think you need to worry about it, even if you do have Hashi's.

HealthyEmski profile image
HealthyEmski in reply togreygoose

Thanks for your answer. There is not much I can do about the test results as no control over what my GP/NHS tests; it looks like I will have to have private tests done again.

I have taken selenium for years and it has made no significant difference.

SlowDragon profile image
SlowDragonAdministrator

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

First step is to get TSH Ft4 and Ft3 tested

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

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

For thyroid including antibodies and vitamins

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

The cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Suggest you also consider getting DIO2 gene test

thyroiduk.org/tuk/testing/D...

thyroiduk.org/tuk/testing/D...

If you test positive this can help get T3 prescribed

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

thyroiduk.org/tuk/About_Us/...

Is this dose of 175mcg more or less than the full dose by weight?

1.6mcg levothyroxine per kilo of your weight?

If it’s more, that might suggest lactose intolerance

Have you ever tried dairy free?

Lactose intolerance is very common with Hashimoto's

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.

HealthyEmski profile image
HealthyEmski in reply toSlowDragon

Thanks, Slow Dragon for your reply. I use the same brand of medication ( and avoid Teva as I didn't feel right on it). I follow the protocol of when to get tested. I very rarely eat diary so don't think the lactose issue is one for me.

My dose is less than equivalent than my weight ( about 40 mcg less) but not sure what the significance of this is; could you please explain more? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply toHealthyEmski

You take your weight in kg x 1.6= roughly the likely daily dose levothyroxine required

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Some people need more, some might need slightly less

Eg

12 stone 10lbs = 80kg

80 x 1.6mcg = 128mcg daily dose levothyroxine

(so likely 125mcg)

17 stone 2lbs = 109kg

109 X 1.6mcg = 175mcg daily dose of levothyroxine

HealthyEmski profile image
HealthyEmski in reply toSlowDragon

Thanks, Slow Dragon, useful to know as a rough guide for medication.

SlowDragon profile image
SlowDragonAdministrator in reply toHealthyEmski

Many hashimoto’s patients have extremely poor gut function and poor absorption

Liquid levothyroxine may give better result. You usually need to see an endocrinologist to get liquid levothyroxine prescribed. It’s relatively expensive.....but cheaper than T3

List of different brands and options here

thyroiduk.org/tuk/treatment...

So that’s often first step .....endo will try liquid levothyroxine

If not enough improvement, then adding T3 is next step

How long have you been gluten free?

Did this give significant improvement?

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