help ! Very elevated TSH

[lloydsussex]

hi , I’ve been very unwell past few days ( joint ache , lethargy , chills, headache ) so had bloods taken and was shocked to see my tsh was 42 ! My endocrinologist said I should aim for around 1 so naturally I’m shocked . I wasn’t even sure levels coukd go up that high . Can anyone tell me if these levels are dangerous etc . I’m currently on 165mg thyroxine following total thyroidectomy about 8 years ago

[helvella Administrator Thyroid UK]

TSH can go much higher than that. We've certainly seen some over 100.

The high TSH in itself isn't the problem. But the low thyroid hormone levels (FT4 and FT3) that this TSH result implies could be.

Can you give us a little more background? I'll bombard you with some questions to try to understand. Have you had regular tests? Have the results been OK?

Have you been taking any other medicines or supplements?

Have you changed make of levothyroxine? How are you achieving 165 micrograms?

[lloydsussex in reply to helvella]

Thank you - I’m on 50mg plus 100mg . My T4 was 13 . I’m on Hrt as well ( lenzetto and progesterone ) last result 11 months ago TSH was 3 I think

[helvella Administrator Thyroid UK in reply to lloydsussex]

Most members here would say that a TSH of 3 is too high! Let alone 42.

Most of us need a TSH close to 1 - or a bit below. (Assuming TSH is reacting in textbook fashion.)

FT4 of 13 is likely low. But the reference intervals (ranges) for FT4 vary quite a lot. Do you have the range?

One possibility is that you needed a dose increase but, because you didn't get one, your TSH continued rising, rising, rising. With no response (of course - you don't have a thyroid to respond),there is nothing to cap it and stop it rising further.

Other factors - your HRT, you having some other illness - could have increased your need further.

However, it is possible that your need has risen fairly suddenly. For example, some people seem less able to absorb one make than another. Hence why I asked if the make you are taking has changed. Or you could have received a batch that is sub-potent.

You need to see your prescriber urgently and explain. They should increase your dose immediately. I'm not sure by how much. Usually, I suggest the smallest rate of change possible in the circumstances. That allows our bodies to adapt. So an increase of 25 micrograms. However, someone who has actual experience of this might be more keen to suggest a 50 microgram increase.

[greygoose in reply to helvella]

Mouse antibodies?

Whilst 3 is too high for someone on thyroid hormone replacement, a rise to 42 in just 11 months doesn't seem plausible. I would want a retest in a different lab to verify.

[helvella Administrator Thyroid UK in reply to greygoose]

That is a good point!

It is pretty awful if a lab saw a TSH of 42 and didn't automatically and immediately do FT4 and FT3 as well. (I'm assuming!)

[greygoose in reply to helvella]

Agreed. But they never seem to. Not FT3, anyway.

[lloydsussex]

thank you that’s great advice. Actually I think my manufacturer may have changed as I moved house in March . I’m speaking to my gp tomorrow . The t4 “normal range “ was 11-22

[helvella Administrator Thyroid UK in reply to lloydsussex]

Without any doubt, your dose should have been increased 11 months ago.

Changing makes is always difficult - might have no effect at all - through to major issues!

All the UK makes are in my UK medicines document. Just so you know what the possibilities are.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc. PLUS how to write prescriptions in Appendix F.

dropbox.com/s/bo2jzxucgp9hl...

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).

dropbox.com/scl/fi/gx6dmz5i...

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

dropbox.com/s/dliou4fszbegw...

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

[pennyannie]

Hello Lloydsussex and welcome to the forum :

Considering your dose of T4 is 150 mcg daily that T4 reading of just 13 and 18% through the range seems low ?

I read your TSH was too high at 3 - some 11 months ago - do you have a T4 reading for this result - and what has changed in this past year orso ?

Some forum members find they need to increase their thyroid hormone replacement once on settled on HRT - could this be the part of the issue ?

Obviously your bloods need to be rerun - we recommend a fasting blood draw and just take in water the morning of the blood test and your appointment should be by 9.00 am and you take your T4 for that day AFTER the blood draw so we measure what your body is holding rather than that just ingested.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 x more powerful than T4.

Some people can get by on T4 only medication - Levothyroxine.

Some find T4 seems to stop working as well as it once did - and that be adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - their thyroid hormonal balance is restored and they feel better.

Others can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3 which is the active hormone and runs all your bodily functions from your physical ability and stamina, though to your mental, emotional, spiritual and psychological well being, your inner central heating system and your metabolism.

Whilst others find their health and well being restored taking Natural Desiccated Thyroid which contains all the same known hormones as the thyroid gland and derived from pig thyroids dried and ground into tablets referred to as grains.

No thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - which we can advise on - if you have any of these results and ranges.

Without a thyroid it is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH - with an occasional T4 ' thrown in ' -

as is what seems to be happening within primary care settings and laboratories - with many forum members forced to run their own blood tests in order to keep themselves well and on top of their own health issues.

Your Hypothalamus - Pituitary - Thyroid feedback loop - the HPT axis is now down regulated as there is no thyroid in situ completing this circuit loop which the TSH relies on as working.

When on T4 monotherapy we generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 60/70% through its range.

There is nothing on your Profile - was your thyroidectomy because of Graves Disease ?