Hi, I’m new here and looking for some guidance - Thyroid UK

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Hi, I’m new here and looking for some guidance

SKS_1 profile image
10 Replies

I was diagnosed with Hashimoto’s in October 2021. I was initially given 50mg levothyroxine which was increased to 100mg in November.

I am trying to conceive and I was due to commence IVF which has all been put on hold due to my thyroid health. My concern is my TSH seems very suppressed and to conceive ive been told it should be between 1-2.

I had an MRI scan to check my Pituitary gland. I am hopefully receiving the results from the scan in a couple of days. Has anyone had any experience of this?

I have been getting my bloods drawn every 6 weeks since starting medication -

Sept Nov Dec Jan

TSH 0.34 0.32 0.24 0.26

Free T3 4.2 4.7 5.1 3.7

Free T4 8.8 17.4 18 15.2

TPAb 27.16 24.72 22.09

Any advice would be greatly appreciated, my consultant was happy with results in December but it’s only when I reminded him I am trying to conceive that he decided to do the MRI but he didn’t explain why.

Thanks

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greygoose profile image
greygoose

Hi SKS_1, welcome to the forum.

My concern is my TSH seems very suppressed and to conceive ive been told it should be between 1-2.

No, that's not true. What they should have said is 'to conceive, TSH should be maximum 2'. Doesn't matter how far below 2 it is.

TSH has absolutely nothing to do with conception itself. It's just an indicator of the level of thyroid hormone - and not always a very good indicator, I have to say. TSH is a chemical messenger between the pituitary and the thyroid - it's not even a thyroid hormone - to tell it to make more or less thyroid hormone. TSH is high when the thyroid hormones - T4 and T3 - are low.

The important number for conception and early months of pregnancy, is the FT4, because it's the T4 that crosses the blood placenta barrier to nourish the developing baby, before it develops its own thyroid. So, what you really need are good levels of FT4 - but also FT3, which is the active hormone that keeps you fit and healthy.

I'm afraid I can't comment on your FT4/3 levels, because - for one thing - they're difficult to read, all pressed against each other like that. And secondly, because you haven't put the ranges. Ranges are essential for interpreting blood test results because they vary from lab to lab, so we need to know the ranges that came with your results. :)

SlowDragon profile image
SlowDragonAdministrator

Do you always get same brand levothyroxine at each prescription

Please add ranges on these results

Ft3 looks too low in most recent test….but need range on results

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

What vitamin supplements are you currently taking

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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 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

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

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 too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

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...

SKS_1 profile image
SKS_1 in reply to SlowDragon

Thank you both for the information, sorry I was not aware u need the range for the blood tests. This is all very new to me… that’s great to hear about the TSH and conception.

My consultant did order a full blood count and he said everything else was fine .. however I do take the following for fertility/thyroid health -

Omega 3/6/9, vitamin D, selenium, ginseng, vitamin b complex, coq10, magnesium and procieve plus

Free T4 - 15.2

Range 9-23 pmol/L

Free T3 - 3.7

Range 2.4 - 6 pmol/L

TSH - 0.26

Range 0.3 - 4.2 mU/L

TP Antibodies - 22.09

Range 0 - 5 IU/ml

TSH Receptor Ab - negative

The above are all my latest results, it doesn’t look I have had a TG antibody test.

I have my appointment with my consultant today, so any advice would be appreciated.

SlowDragon profile image
SlowDragonAdministrator in reply to SKS_1

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

Are you aware you need to stop vitamin B complex a week before all blood tests as it contains biotin and biotin can falsely affect test results

You need to actually test vitamin D, folate, ferritin and B12 at least once a year minimum

Important to take any magnesium, vitamin D, iron or calcium supplements at least 4 hours away from levothyroxine

Folate and B12 are Goldilocks supplements, you don’t want too little or too much before TTC

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...

Come back with new post once you get results

SlowDragon profile image
SlowDragonAdministrator in reply to SKS_1

FT4: 15.2 pmol/l (Range 9 - 23) 44.29%

FT3: 3.7 pmol/l (Range 2.4 - 6) 36.11%

With Ft4 only 44% through range, suggests under medicated

Ft3 lower, so not very good conversion rate either

Obviously the medics just look at low TSH

Most people when adequately treated will have Ft3 at least 50% through range

Likely to need either dose increase in levothyroxine or addition of T3

Testing vitamin levels and maintaining at OPTIMAL levels may improves conversion rate

Pregnancy guidelines

thyroiduk.org/having-a-baby-2/

gp-update.co.uk/files/docs/...

Important See pages 7&8

btf-thyroid.org/Handlers/Do...

thyroidpharmacist.com/artic...

SKS_1 profile image
SKS_1

Thank you both for the information, sorry I was not aware u need the range for the blood tests. This is all very new to me… that’s great to hear about the TSH and conception.

My consultant did order a full blood count and he said everything else was fine .. however I do take the following for fertility/thyroid health -

Omega 3/6/9, vitamin D, selenium, ginseng, vitamin b complex, coq10, magnesium and procieve plus

Free T4 - 15.2

Range 9-23 pmol/L

Free T3 - 3.7

Range 2.4 - 6 pmol/L

TSH - 0.26

Range 0.3 - 4.2 mU/L

TP Antibodies - 22.09

Range 0 - 5 IU/ml

TSH Receptor Ab - negative

The above are all my latest results, it doesn’t look I have had a TG antibody test.

greygoose profile image
greygoose in reply to SKS_1

Only just found this reply by chance. On this forum, I'm afraid you have to click on the blue 'Reply' button under the comment you are replying to, for anybody to know you've replied.

So, all those supplements! Did you get anything tested - like vit D - before starting them? Nothing is going to do anything for you if you don't need it.

procieve plus

It's just a glorified multi-vit, and multi-vits are always, always a bad idea and a complete waste of money. Looking at the ingredients - which one should always do - one sees they have used the cheapest, least bio-available ingredients, like magnesium oxide and folic acid. However, nothing will be absorbed anyway because it also contains iron, and iron blocks the absorption of everything apart from vit C. Iron should be taken at least two hours away from everything except Vit C, which is essentail to help absorption of the iron, and avoid constipation.

It also contains iodine, which is something you need to avoid in excess when hypo, unless you know you are deficient. You are already getting iodine from your levo: 100 mcg T4 contains about 65 mcg iodine which is recycled in the body. Plus what you get from food. I doubt more is necessary.

So, I think a complete rethink of your supplements - and when you take them - is necessary. :)

Free T4 - 15.2 (9-23) 44.29%

Free T3 - 3.7 (2.4 - 6) 36.11%

You are very under-medicated. When on thyroid hormone replacement, the FT4 needs to be more like 75-80% through the range, and FT3 just slightly lower, but in the top third of the range. Very doubtful you will conceive with those numbers, you are still hypo.

SKS_1 profile image
SKS_1 in reply to greygoose

Sorry I didn’t realise about the notifications.

Thank you, I will review all my supplements. I have been told I need iron and vitamin D.

I have my review with my consultant today and will also receive the MRI results, I will ask him to review my dose but I told him last time I felt it wasn’t correct as I have been trying to lose weight for past six months and the scales do not budge at all. I have been in a calorie deficit and have been exercising but nothing.

He told me the dose was correct and they will review again in six weeks! Hopefully he will take me seriously this time as the blood numbers are low.

greygoose profile image
greygoose in reply to SKS_1

I have been in a calorie deficit and have been exercising but nothing.

Not the best way to lose weight when you're hypo. You need calories to convert T4 to T3. And, your FT3 isn't high enough to sustain any exercise more strenuous than walking. You're probably making yourself more hypo that way. What you need to lose weight it an adequate dose of thyroid hormone.

He told me the dose was correct

On what does he base that statement? How can he possibly know? He is not inside your body. And, if you don't feel it's correct, then it isn't.

I expect he's just looking at the TSH, because that's all he knows about - and he doesn't fully understand that, either! The most important number is the FT3, because T3 is the active hormone that keeps us well - or sick, as the case may be. And, your FT3 is obviously too low. It should be at least over mid-range, probably higher.

SlowDragon profile image
SlowDragonAdministrator in reply to SKS_1

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight can be helpful to argue that you need dose increase in levothyroxine

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

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.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

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