I was diagnosed with hypo 18 months ago (TSH 48) and put on 50 levo then told that was too high and went on 25mg. Felt AWFUL on 25mg rapidly gained weight, fatigue , pins and needles, depression etc. but now have convinced my endo to let me have 37mg my blood work shows my TSH is now 0.01
free t4 is 23 and free t3 is 7.7 so worried they will take my off meds completely. Even though my ultrasound my thyroid is nearly atrophied and very high thyroid antibodies.
Has anyone else found this? I am so confused and endo seems equally confused.
My white blood cell count has also been flagged as high. Be great if anyone can shed any light on any of this!
Thank you so much
Written by
Frankyn
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If you have very high antibodies, and a shrunken thyroid, then you have Ord's Thyroiditis. Not surprised your endo is confused! lol He doesn't have the training to know what's going on.
Ord's disease is the same as Hashimoto's Thyroiditis except that with Ord's the thyroid shrinks, and with Hashi's, there's usualy a swollen thyroid - a goitre. Have you heard of Hashi's? It's more well-known than Ord's.
They are both autoimmune diseases - hence the antibodies - where your immune system slowly destroys your thyroid. And, during an attack on the thyroid, the dying cells deposit their stock of hormone into the blood, causing your FT4/3 to rise sharply, and the TSH therefore becomes suppressed.
So, you're not over-medicated, you're having a temporary 'hyper' swing. Eventually the excess hormone will be used up/excreted, and you will become hypo again. It's crazy that endos don't know about this, but they don't. You'll have to explain it to him.
Thank you so much for taking the time to reply. Ever since I started levo my TSH has consistently been under 0.3 is that standard for Ord’s? Thank you again
Nothing is standard for Ord's. Everything varies all the time.
But, what time do you have your blood draw? TSH is highest early morning - before 9 am. It then drops sharply until it is at its lowest around midday. So, given that most doctors only look at the TSH, we always advise getting the blood draw before 9 am. That way, you can compare them more accurately.
One more thing, how long was the gap between your last dose of levo and the blood draw? If you took it a couple of hours before, you have a false high FT4. You need to leave a gap of 24 hours.
Did you have fT3 or fT4 measured when your TSH was 48? This would be useful as there is a genetic condition called resistance to thyroid hormone (RTH) which presents with a high fT3 or fT4 and a non-suppressed TSH This puts high demand on the thyroid and makes it susceptible to autoimmune thyroiditis.
What were your blood test results when you were on 25 mcg?
Gosh thanks so much for the replies l. So so helpful these last tests were at 9.00 and 25 hours after a dose but previous ones weren’t.
This time my ferritin is 67 but white blood cells and neutrophils been flagged as low.
For my last blood tests in February (on 25mg levo) and my TSH was still 0.01 and free T4 was 21. My iron saturation was also flagged as low (14) and triglycerides as high (2.46)
My anti TPO was 345 and ANTI TG was 179
The consultant says he doesn’t understand why when my TSH was 48 before meds and antibodies are so high the bloods show that even 25mg is too high for my body. I am keen to try a different medication…
Thanks again. It’s all so new and confusing to me x
Thank you I will def request these tests. I did have a test on march when on 25mg and my TSH was 0.03 free t3 was 4.2 and free T4 was 12.8 so more in line with what the doctors wanted but that’s when I felt my worse
Definitely feel like I’ve had a flare up as felt worse this year than before I was diagnosed. My symptoms before diagnosis were weight gain, puffiness, cold , flu like, pale etc and now rapid weight gain, pins and needles all the time, sore throat every day, horse voice, fatigue etc.
I know I’m not alone and everyone here suffers with different symptoms .
Does anyone Else alway get low white blood cell counts?
Thorne Basic B recommended option that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Yes just one high TSH result but my symptoms, the antibodies and ultrasound confirmed the hashimotos. I don’t have the t3 or 4 from those results annoyingly.
In march when I went down to 25 every day my TSH was 0.03 and free T3 4.2 and free T4 12.8 so the doctors would rather I was on that but feel so much better on 37.
Have put Ona stone and a half since they made me go down to 25mg.
My B12 was normal but haven’t had other virnamon checks will ask for them! And I take a thyroid supplement, iron tablets and zinc that now sounds is t the best thing to take.
Creatine and white blood cell count slightly low on all my results . Hard to know what’s best to ask for to feel better
Selenium & zinc are safe supplements but many thyroid support preparations contain iodine which might not be good and can affect thyroid adversely (& unpredictable). Causing either a decrease in levels or increase in levels.
Iron shouldn’t be taken unless iron panel done & known deficient.
I’ve noticed others with similarly elevated levels and not sky high levels tend to gain weight. I think it’s a result of low energy / high appetite,
Once levels are very high most are unwell & lose weight. I had unnoticed elevated levels many years.
You may also feel worse when changing dose not because it’s too high or too low a dose you may be like me and be quite sensitive to alterations & fluctuations which occur more often with autoimmune under active thyroid.
Your FT4 & FT3 levels were too low on 25mcg. The doctors are focusing on TSH. Aim for small increases (every 6 weeks) until FT4 in top third of range.
Yes, my sister has the same problem. The slightest reduction of levothyroxine and she feels awful. Fortunately she has educated her doctor to accept this situation. She also stopped taking the levothyroxine 24 hours before the test. She has been like this for quite a few years now without any problem.
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T3 trial without blood tests 
Blood results feel over medicated
Feel awful but results 'normal'
On Levo & T3 and still feel awful
