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
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...
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 🥵
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?
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
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
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.
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.
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,
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 😔
After scouring my more recent lab results I found tests for “mouse and sheep proteins”.. I believe.
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 )
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. ❤️🩹
TSH still rising
IVF and Fertility 
Treatment for hypothyroidism to improve my quality of life
Results - is my TSH 'too' low?
What causes TSH to rise while still on thyroxine?
