TSH at 100: Hi, my name is Zoe. I am 29 years old... - Thyroid UK

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TSH at 100

ZoeV profile image

Hi, my name is Zoe. I am 29 years old and I been told that I am pregnant with a TSH of 100 (0.2 - 4.2) and Free T4 9.2 (12 - 22). I have been taking 25mcg levo ever since diagnosis in 2013. Your thoughts welcome please, thank you

26 Replies

ZoeV,

You are terribly undermedicated. I would increase dose to 100mcg immediately. You need to get FT4 up and TSH down ASAP. High TSH increases the risk of miscarriage.

TSH should be in the low-normal range 0.4 - 2.5 during the first trimester. When pregnancy is confirmed dose is usually increased by 25-50mcg to ensure good foetal development. NICE also recommends that hypothyroid women planning pregnancy should be referred to en-docrinology. cks.nice.org.uk/hypothyroid...

Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee

13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).

onlinelibrary.wiley.com/doi...

According the ATA First Trimester TSH levels between 2.5 and 5.0 are associated with increased pregnancy loss

Saggyuk profile image
Saggyuk in reply to Clutter

Apologies, your post wasn't showing earlier when I started to write lol - didn't mean to repeat you ;-)

Saggyuk profile image
Saggyuk in reply to Saggyuk

And yes, actually I would agree with @clutter that you need and increase to 100mcg even though not the norm but you are too hypothyroid to begin with.

To be honest, I'm surprised you managed to even get pregnant if your results were like this beforehand. You need to be referred immediately for urgent appointment with the local endocrinologist and immediately. You need to increase to at least 75mcg immediately (as in today) and then rested after six weeks and likely further increases to follow - they may want to retest sooner in your situation though and I would say four weeks.

You should never have been left on 25mcg under normal circumstances so whatever doctor that was, you need to be sure you're not with them now or any other who've been aware of this. Unless they have been testing you very regularly throughout this time and you just happen to be unusually okay although I would still be suspicious if your T4/T3 levels were not tested.

Please read as much as you can about hypothyroidism. Here's some info on pregnancy and hypothyroidism.

This one is the guidelines they are supposed to follow in these circumstances including urgent referral to endo:

cks.nice.org.uk/hypothyroid...

This one explains the issues and what is needed for a successful outcome:

btf-thyroid.org/projects/pr...

You need to be on the phone tomorrow morning to get action on this.

ZoeV profile image
ZoeV in reply to Saggyuk

Hi my results were better beforehand and I am under an endocrinologist

Saggyuk profile image
Saggyuk in reply to ZoeV

If you are already under an endocrinologist, you need to call his department straight away and tell them you're pregnant with a tsh of 100 - endo is likely to want to see you immediately. You can call his secretary and she should be able to help you once you explain. I too found myself pregnant unplanned and I simply called my endo and they saw me the next day and put my dose up by 50mcg immediately - that was before they even had time to check my results which turned out not to be bad like yours yet anyway.

This extra requirement is mentioned in the guidelines above and is required by week 4 to 6 of the pregnancy and they should have been aware of this so don't understand why not actioned already. I can only assume that the endo is not yet aware of the situation and your GP is clueless - or you have a crap endo with little knowledge on thyroids - they are often diabeties specialists. This increase is required as the baby is reliant on you for T4 to develop normally as cannot make it's own at this stage and you own body needs more to cope with the pregnancy and clearly you are not getting anywhere near enough. This shouldn't be left and should be considered urgent as could have huge consequences - I cannot emphasize enough that this needs to be Sharpish and every day with results like that is a problem.

If any of them refuse to deal with it, you need to refer them to the guidelines above. They cannot dispute the NICE guidelines as being incorrect.

What were your results beforehand?

ZoeV profile image
ZoeV in reply to Saggyuk

Results on diagnosis

TSH 99.3 (0.2 - 4.2)

FT4 10.4 (12 - 22)

Under an endo

Saggyuk profile image
Saggyuk in reply to ZoeV

I'm still confused - those results are really bad - you would need much much more than 25mcg to correct this. am assuming these were from 2013? Did they retest you after the 25mcg, did they not do yearly checks since?

ZoeV profile image
ZoeV in reply to Saggyuk

They were from 2013 and they retested every 6-8 weeks but they have kept me on 25

Saggyuk profile image
Saggyuk in reply to ZoeV

Can you give me an example of what the results were like through this time, what was your TSH (lowest/highest)?

Saggyuk profile image
Saggyuk in reply to ZoeV

Also and more importantly, did you get the increase in the meds required?

Saggyuk profile image
Saggyuk in reply to ZoeV

Hi Zoe, I just wanted to check if you had been given an increase yet? I can't emphasize enough how important this is because if not corrected immediately, you have a high risk of miscarriage and if you don't miscarry, a good risk of fetal abnormalities so am really concerned for you.

See you doctor immediately, ask them to contact an endocrinologist and consider giving you a bolus dose of levothyroxine, i.e. high dose levothyroxine for a day or two and then 100 mcg daily with follow up blood test in a couple of weeks. Don't take any crap from your doctor they have failed you. Don't leave the surgery until they have a plan of action. Take someone along with you if you can.

25 mcg levo is actually nothing. when i use 100 mcg levo it increases 2.0 level of T4 only. i advice you using at least 125mcg for your case.

I would say you're in the middle of a storm. A TSH of 100 means you're body is screaming for more Thyroid hormone but your FT4 is not low so there is no need for it to scream

Have you had your iodine levels checked ? Radio 4 program yesterday on thyroid iodine and pregnancy.

You should listen to it.

If you are talking Kelp supplements stop immediately

Demand an iodine urine test this is not a pure thyroid thing it's a storm probably caused by too much or too little iodine.

humanbean profile image
humanbean in reply to Redditch

I think you've misread the numbers :

Free T4 9.2 (12 - 22)

Free T4 is well below range.

jimh111 profile image
jimh111 in reply to Redditch

Sorry, nothing to do with iodine, simply too little levothyroxine. Thyroid storm is completely different, a dangerous release of large amounts of thyroid hormone. No need for iodine as a larger dose of levothyroxine will contain iodine.

ZoeV profile image
ZoeV in reply to Redditch

I do not have thyroid storm thanks

ZoeV profile image
ZoeV in reply to Redditch

FT4 below range it is 9.2 (12 - 22)

Saggyuk profile image
Saggyuk in reply to ZoeV

Yes, I think they must have misread your numbers. Your T4 is definitely well under range and are simply very hypothyroid

SlowDragon profile image
SlowDragonAdministrator

Presumably you have high thyroid antibodies?

This is Hashimoto's also called autoimmune thyroid disease

Dose should never have been left at 25mcg. Standard starter dose is 50mcgs and is normally increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

You are extremely under medicated getting dose increased to bring TSH down to under 2 is matter of urgency

As others have said a larger dose increase than normal will be necessary

Ask GP to test vitamin D, folate, B12 and ferritin urgently TODAY

LOW folate and B12 especially are bad for growing child.

Post vitamin results and ranges if you have them

Can you add your previous blood test results from before conception.

ZoeV profile image
ZoeV in reply to SlowDragon

THYROID PEROXIDASE ANTIBODIES 476 (<34)

THYROGLOBULIN ANTIBODIES 266.2 (<115)

SlowDragon profile image
SlowDragonAdministrator in reply to ZoeV

So your antibodies are high, therefore this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

An endocrinologist should oversee your pregnancy ASAP

Essential to test vitamin D, folate, ferritin and B12, especially as your are pregnant

Always get actual results and ranges. Post results when you have them, members can advise

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

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

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

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

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

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

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

thyroidpharmacist.com/artic...

ZoeV profile image
ZoeV in reply to SlowDragon

Results on diagnosis

TSH 99.3 (0.2 - 4.2)

FT4 10.4 (12 - 22)

The medication is way too little. Since you're pregnant, you need even more hormones than normally for the baby's health. So I would recommend urgently seeing a good doctor who knows thyroid treatments (endocrinologist) to adjust the medication correctly. During pregnancy the medication is more.

It looks like you need way more thyroxine. This is important for you and your baby's development.

Karen

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