Newly diagnosed and looking for advice

[Grasscourts]

Hi, new to the group and just after some advice. I’ve had a borderline under active thyroid for approximately 3 years. Last week my bloods showed a TSH of 6.46 & the other score was the lower end of normal range? (Wasn’t given the figures for that one) I have been started on 25mcg of Levothyroxine. Is this enough? I know people with lower TSH but on 75mcg+

[SeasideSusie Remembering]

Grasscourts

have been started on 25mcg of Levothyroxine. Is this enough?

50mcg Levo is a normal starter dose unless it's a child, elderly (classed as over 50 I think) or someone with heart problems.

You should be retested in 6 weeks, increase of Levo dose of another 25mcg, repeat every 6-8 weeks until your levels are where they need to be for you to feel best.

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

Always ask for a print out from receptionist - not doctor - (don't accept verbal or hand written results) when you know your results are back, keep a record as this will be a valuable resource in the future:

Date

Test name

Result

Reference range

Dose of Levo at time of test

Comments on how you feel

Note any change of dose based on result of test

When doing thyroid tests, we advise:

* 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, coffee affects TSH so it's possible that other caffeine containing drinks may also 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 in the assay).

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

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.

I know people with lower TSH but on 75mcg+

This will be because their dose has been titrated up after follow up tests.

It's also important to have the following tests done:

Thyroid antibodies - this will determine if the cause of your hypothyroidism is autoimmune.

And because optimal nutrient levels are necessary for thyroid hormone to work properly:

Vit D

B12

Folate

Ferritin

[Grasscourts in reply to SeasideSusie]

Thank you so much for your reply - that’s really helpful advice. Will make sure I follow those instructions at my review test in 6 weeks.

[Hidden]

Hi

Just a question- do you mind saying how old you are? Over 50s current guidelines that many GPS follow starting dose at 25mcg- and for over 60s or with known heart disease. Those below 50 years at 50mcgs and then increasing by 25mcg every 6-8 weeks following bloods, assuming your GP will increase on new blood results. If TSH falls in what they deem normal range, they generally won’t.

[Grasscourts in reply to Hidden]

Hi. I’m 45 with no known heart problems. Thank you for your reply

[Hidden in reply to Grasscourts]

Seaside Susie is an expert here so her advice is the stuff to follow!

I am 51 and had to push GP to increase to 50 after two weeks as I didn’t deem it fair as was only just in the 50 range- I’ve got no heart issues etc and was extremely ill. I’m glad I did as that then started to make a difference.

Think some are overly cautious with the 25mcg start, but as SeasideSusie has quoted, the guidelines are clear and at 45???

[SlowDragon Administrator]

Ask GP to test vitamin D, folate, ferritin and B12 plus both TPO and TG Thyroid antibodies at next test

Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more effective and more convenient taken at bedtime

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Vast majority of primary hypothyroidism is due to autoimmune thyroid disease diagnosed by high thyroid antibodies (Hashimoto’s)

Low vitamin levels are extremely common with hashimoto’s