Out of control TSH: So much to tell so I’ll just... - Thyroid UK

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Out of control TSH

MsMagoo1970 profile image
17 Replies

So much to tell so I’ll just throw some numbers out there and maybe someone else can make sense of thinks. Short version recently diagnosed with long standing severe hypothyroidism. At time of diagnosis TSH was +74. At 100mcg L-Thyroxine I feel even worse than at time of diagnosis. What is happening?

9/2021 Labs are attached- L-thyroxine started 25 mcg

11/2021 TSH attached L-thyroxine adjusted to 75 mcg

2/2022 TSH attached L-thyroxine adjusted to 100 mcg

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MsMagoo1970
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17 Replies
MsMagoo1970 profile image
MsMagoo1970

Will add further labs in comments

9/21 labs
MsMagoo1970 profile image
MsMagoo1970

9/21

9/21 Labs
MsMagoo1970 profile image
MsMagoo1970

11/21 TSH

11/21 TSH
MsMagoo1970 profile image
MsMagoo1970

2/22 TSH

2/22 TSH
SlowDragon profile image
SlowDragonAdministrator

Thousands of tests there…..but nothing relevant apart from TSH

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

Request vitamin D, folate, ferritin and B12 plus thyroid antibodies tested NOW

Retest thyroid levels 6-8 weeks after increasing levothyroxine to 100mcg

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

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. In USA they might call it with

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

About 90% of all primary hypothyroidism in Uk and USA 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...

MsMagoo1970 profile image
MsMagoo1970 in reply toSlowDragon

I included all of my initial labs bc I wasn’t sure whether or not anything else contained within has relevance to what is happening.

This saga began with a trip to my local ED as I felt that my breathing was being restricted, my breathing was very raspy, vocal chords seemed compromised. I had a sensation like somebody had their elbow on my throat. At that time my thyroid was enlarged and substernal, I’ve gone from 115 lbs to 188 lbs in fifteen months. My hair is falling out, I’m beyond fatigued, just speaking I become short of breath like I ran a marathon, my tongue is swollen, my skin is thickened and dry on my hands and feet.. I still have a sensation like something is stuck in my throat.. I’m honestly afraid that if somebody doesn’t get to the bottom of this I may die with no answers. My GP seems hesitant to refer me to an endocrinologist, which I don’t understand. I also don’t understand what they mean by “TSH values are distorted by thyroid antibodies”? Can anyone tell me the title of thyroid antibody test so that I can scan my medical records for the test?

Thanks in advance fir your help and support, I feel so alone and overwhelmed by how miserable I am 🥵

SlowDragon profile image
SlowDragonAdministrator in reply toMsMagoo1970

Thyroid antibodies details in my first reply

TPO and TG antibodies for autoimmune thyroid disease also called Hashimoto’s

Presumably you have had thyroidectomy for substernal goitre?

SlowDragon profile image
SlowDragonAdministrator in reply toMsMagoo1970

Just testing TSH is completely inadequate

ALWAYS test TSH, Ft4 and Ft3 together

Test early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Only test after being on constant unchanging dose levothyroxine for minimum 6-8 weeks

Have you had Ft4 and Ft3 tested?

TSH can be falsely affected by mouse antibodies (yes really!)

ncbi.nlm.nih.gov/labs/pmc/a...

pubmed.ncbi.nlm.nih.gov/232...

Which is what diogenes was alluding to I think

Important to always test Ft4 and Ft3 and vitamin levels

SlowDragon profile image
SlowDragonAdministrator

academic.oup.com/jcem/artic... should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an 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 convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

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

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

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

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

diogenes profile image
diogenesRemembering

It's possible your TSH results are distorted owing to interference from antibodies in your blood system that compete with the test materials Try to get TSH test done by a different mach ine method.

MsMagoo1970 profile image
MsMagoo1970 in reply todiogenes

Can you please elaborate on “different machine method”. My initial tests were completed via hospital lab and follow up through a local (chain type) lab. I don’t see any reference to how the actual test is completed.

diogenes profile image
diogenesRemembering in reply toMsMagoo1970

There are about 8 major suppliers of diagnostic tests for thyroid. They can use several different methods to produce the test result. Some of these have a problem if a patient has antibodies (say against mouse and sheep proteins) pre-exsting the blood. These can artificially raise the TSH measurement by interfering in the test. In a case where a patient has normal to high-normal FT4, and high TSH, these circumstances should be examined by measuring by several methods. Such a combination is very suspicious,

MsMagoo1970 profile image
MsMagoo1970 in reply todiogenes

I did find my Free T3 & T4 lab results from November. I haven’t found any thyroid antibody tests- but I also don’t know what exactly I’m looking for 😔

11/2021- Free T3
MsMagoo1970 profile image
MsMagoo1970 in reply todiogenes

11/2021- Free T4

Free T4
MsMagoo1970 profile image
MsMagoo1970 in reply todiogenes

After scouring my more recent lab results I found tests for “mouse and sheep proteins”.. I believe.

Mouse/Sheep proteins
tattybogle profile image
tattybogle in reply toMsMagoo1970

I don't think ? these tests have anything to do with the sort of 'antibody interference' that diogenes was talking about . Those don't appear to be antibody tests.

if i remember correctly ,the 'mouse' antibody is called H.A.M.A. (Human Anti Mouse Antibody) ..I don't think H.A.M.A. would be tested unless an endocrinologist had referred the 'odd' results for further investigation by a specialist.

( No idea what the sheep one is called .. i didn't know here was a sheep one )

MsMagoo1970 profile image
MsMagoo1970

Thank you, I’m now waiting on an appt with an endocrinologist. My referral finally was approved. I physically feel terrible and truly hope there’s a simple/speedy outcome although I’ve seen for many here that hasn’t been the case. I will continue to share updates/results as I receive them. Thank you again for trying to help. ❤️‍🩹

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