Recent under active thyroid diagnosis

[Sparkie1986]

Hi guys - I’ve recently been diagnosed with under active thyroid. I think it’s something I have taken post natal as I didn’t have it before my pregnancy. I am 35 years old.

My tsh is 10.6 and t3 is 9.1. There is no auto immune issues. That’s all the details I was given by the doctor. Should I be asking for further details. I’m quite uninformed given it’s a new diagnosis.

I’ve been started on 75mg of levothyroxine. I only started those on Saturday past. So not sure how they will help- or agree with me as yet. Should that have been a lower dose starting off?

I was due to start my second round of IVF treatment this month which has now been postponed until such times as the TSH levels come below 2.5. I wondered if anyone else has been in the same position and would it be worthwhile paying to see a consultant?

Thanks

[SeasideSusie Remembering]

Sparkie1986

My tsh is 10.6 and t3 is 9.1. There is no auto immune issues. That’s all the details I was given by the doctor. Should I be asking for further details. I’m quite uninformed given it’s a new diagnosis.

I doubt there's anything your GP will say, they are notoriously bad at discussing all things thyroid, probably because they don't understand much about it.

I suggest you take a look around ThyroidUK's main website (this is their forum), there is a wealth of information there:

thyroiduk.org/if-you-are-hy...

Come back and ask as many questions as you like and we will help.

I’ve been started on 75mg of levothyroxine. I only started those on Saturday past. So not sure how they will help- or agree with me as yet. Should that have been a lower dose starting off?

There are two ways of starting Levo according to NICE Clinical Knowledge Summary, last updated May 2021

1) The NICE clinical guideline recommends:

Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.

Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.

2) The British National Formulary (BNF) recommends:

For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.

For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.

So you could have been started on a dose by weight which doesn't suit a lot of people. Or you could have been started on 50mcg and titrated every 6 weeks or so after retesting, this more gradual approach seems to be better for many people.

I wondered if anyone else has been in the same position and would it be worthwhile paying to see a consultant?

Not yet. Give it time. It may take a few months for your TSH to come down low enough and levels to stabilise.

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 to be in the upper part of their reference ranges.

You will need to be retested 6 weeks after starting Levo, increase dose, retest 6-8 weeks later, repeat until levels are where you need them to be to feel well.

Many doctors only test TSH, this is not enough as it is not a thyroid hormone, it's a signal from the pituitary. TSH is important for diagnosis but once on thyroid hormone replacement it's the FT4 and FT3 that tell us what our actual hormone levels are and these are the important tests, FT3 being the most important. Unfortunately doctors don't seem to know this. many of us do private tests when GPs can't or wont do them.

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can 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 (most labs use biotin).

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

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

Often we Hypos tend to have low nutrient levels or deficiencies. Nutrient levels need to be optimal for thyroid hormone to work properly, so it's worth asking your GP to test:

Vit D

B12

Folate

Ferritin

Again, these are tests we can get done with private labs if GP wont do them.

[humanbean]

Do you have a printout of your results including the reference ranges? If you haven't you should ask your surgery for access to your medical records and test results online. If they don't offer this service ask for a paper copy of your results.

Don't accept a handwritten set of results because mistakes can be made. There will be a way of printing the results directly from your medical records on computer, and that is what you need.

I think your T3 result at 9.1 is a mistake. With a TSH over 10 it is much more likely that your T4 is 9.1 rather than your T3 being 9.1. Please check.

[Sparkie1986 in reply to humanbean]

Apologies- yes T4 is 9.1