Started having palpitations in March 2022. Tested TSH and it was 1.1 so normal range. Palpitations increased in April and exercise intolerance began. By early May palpitations were more prevalent. Starting May 5th, I was waking up at 3 a.m.everyday with fight of flight feeling. Like way too much caffeine. Jittery with hand and leg tremors. Cardiologist did a monitor and caught 300 palpitations over a 5 day period but no A-fib.
By June,heat intolerance and night sweats began. Foggy head and feeling of being off. Caught Covid June 13 and went 10 days with that. By July 4th, I started having anxiety out of the blue i (am not an anxious person by nature so I have never thought about anxiety). Then I had a full blown panic attack in middle of the night. I reached out to my physician for a psychiatrist referral since I thought it was just work stress maybe. Psych said probably General Anxiety Disorder so was put on 10mg Lexapro.
After 2 weeks,anxiety was less intense, I assume due to the Lexapro.
By July 20th I had lost 30 lbs in a 6week period.
I looked up all the symptoms of hyperthyroid and almost all of mine were a perfect match.
I went to ER July 24th and asked them to test TSH. Result was 0.047. ER physician said he thinks i am hyperthyroid.
Retested July 27 and TSH was 0.365. . FT4 was 1.71 while T3 was 1.82.
Put on 10mg methimazole immediately and referred to Endocrinologist.
New bloodwork August 17th TSH .24 , FT4 0.90, T3 0.82.
Nuclear RadioIodine Uptake was %7 at hrs,6 17% at 24hrs. Doc said that is a normal uptake, however either TSH that suppressed, thyroid should not have taken up hardly anything....so the result is indicative of auto-immune disease...Graves.
TRaB was done and result was <1.00 so no antibodies. Again endo said Graves.Not everyone shows antibodies.
So here we are...Aug 31st,waiting for methimazole to work the magic.
Tomorrow I will add L-Carnitine to the dosage at 2 grams per day.
Current primary symtpoms are insomnia,tremor in hands and legs, and excessive sweating, especially at night.
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Please add ranges. Ranges vary between labs so needed to interpret accurately.
With a normal uptake & negative TRab I think your doctors still assuming it must be Graves is lazy approach.
A low TSH occurs when thyroid levels are high you’d expect to see high % uptake through thyroid (graves) or a highly concentrated area eg toxic nodule with remaining gland suppressed.
With Graves the thyroid is stimulated and it produces too much thyroid, if a scan shows normal uptake - where is the source of the hormone?
Ask for TPO and TG antibodies these are antibodies associated with thyroid autoimmune.
In the early stages of autoimmune thyroiditis (also know as Hashimoto’s) transient high level occur from damage thyroid cells releasing hormones stores. Not from over production.
Ultimately the damage results in under active levels - perhaps In a later stage an uptake scan would show the damage.
Monitor your levels very closely and ensure your dose is adjusted by FT4 & FT3. (Free T3 not total) NOT by TSH. The TSH is unreliable but doctors fixate on it and assume all low TSH is Graves. Often it’s not properly investigated but it seems your doctors have correctly investigated and are still assuming Graves based on low TSH even when there’s no evidence to support diagnosis.
Hi, years ago I would have said I'm surprised your GP didn't take more tests and refer you if necessary, but these days I'm not surprised at all.Sorry you've had to do most of the work yourself to get a diagnosis, which still seems a tad elusive. Hope you will soon feel better than you do and will obtain a definite diagnosis and treatment. 😊
Thank you all for the replies so far. Here is what the doctor wrote in the notes:
"Suppressed TSH with diffuse uptake in thyroid uptake and scan, consistent with autoimmune thyroid disease"
The results and ranges for tests completed:
TSH .240 uIU/ml (.350 - 4.94)
FT4 .90 ng/dl (.70 -1.48)
T3, Total .82 ng/dl (.58 - 1.59)
I do have history of thyroid disorder in family. Mom and grandfather both had thyroid removed/destroyed and put on synthroid.
My 18yr old daughter has nodules on hers and her numbers are suggestive of hypothyroid as well.
The way the Endocrinologist explained it to me on the thyroid uptake scan....TSH is low, which means plenty of thyroid is circulating in body. Because of that the thyroid has no need to uptake any iodine when there is plenty of thyroid already circulating.
I chose a Endo with great credentials in my area. He completed his residency at the renowned John Hopkins in the U.S. as well as a Fellowship at the Mayo Clinic. He has 20+ yrs as an endo as well.
“July 27 and TSH was 0.365. . FT4 was 1.71 while T3 was 1.82.” EDIT 0.97 NOT 1.82.
27th July
TSH 0.365 uIU/ml (0.350 - 4.94)
FT4 1.71 ng/dl (0.70 -1.48) (137.18%)
TT3 0.97 ng/dl (0.58 - 1.59) [38.61%]
10mg Methimazole
“New bloodwork August 17th TSH .24 , FT4 0.90, T3 0.82”
Aug 17th
TSH 0.240 uIU/ml (0.350 - 4.94)
FT4 0.90 ng/dl (0.70 -1.48) (25%)
TT3 0.82 ng/dl (0.58 - 1.59) (23%)
Have I written out the results out correctly?
Is the same range applicable for all results?
Although your July 27th results show over- range FT4 an elevation of 37% over range is not hugely great. Graves typically goes 3x the normal range.
Any continuous elevation would need treatment but with in a few weeks on antithyroid medication it’s has reduced your FT4 & TT3 to a quarter of each range. That’s quite quick on a 10mg dose.
Are you still on 10mg that will very soon bring your levels below range making you hypothyroid. Discuss that with your doctor. They are likely looking at TSH only.
“Diffuse” uptake mean consistent through out - no sign of nodule. “Autoimmune thyroid disease” could equally mean thyroiditis (Hashimoto’s).
With Graves the thyroid over produces despite the low TSH, that’s why the levels CONTINUE to rise.
You may like to also dip into the Elaine Moore Graves Disease Foundation website which is Stateside and your side of the pond where you will also find a forum much like this one.
wwwelaine-moore.com
There you may well find fellow sufferers in your time zone and zip code who can recommend a specialist who they feel has been able to help them in their auto immune thyroid disease management.
If you mean a multi vitamin - they aren’t recommended. They contain smallest amount of usually the cheapest and least absorbable versions of nutrients and often contain items which aren’t helpful such as iodine, calcium & iron.
Selenium of 200 mcg is high dose, maximum of 6 months. Eating a high quantity of selenium rich food in addition could be too much long term.
Magnesium comes in different forms, but good as co factor for vitamin D.
L-cartinine is sold as 500mg maximum recommended daily dose, (in uk) may be different elsewhere. More should really be under medical supervision. The effect of reducing FT4 to FT3 is said to wear off. I alternate bottles between. Acetyl & l- carnitine forms.
Vitamin D needs testing first to supplement to right level. Supplements are usually measured in iu (international units) ug or mcg. If it 450 iu it’s very low.
Another important co-factor for vitamin D is k2 mk7 this directs calcium to your bones and teeth where you want it and away from blood vessels where you don't want it.
This is a patient to patient forum. None of us are medically qualified. Collectively were pretty knowledgeable. Many of us have had to learn as treatment for thyroid issues can be very poor.
Current primary symtpoms are insomnia,tremor in hands and legs, and excessive sweating, especially at night.
Just a suggestion... Ask for your cortisol to be tested (with a blood test) at 8.30am - 9am in the morning. This is the time when cortisol in most people is at its highest and that is what the test is supposed to capture.
Another alternative is to get a saliva test done. Blood testing cortisol is done once in a day at a specific time. It doesn't tell you what your cortisol is doing at noon or late afternoon or at bedtime.
A saliva test is also well worth doing - usually a four part test i.e. spit into a tiny tube four times in a day at set times and freeze the samples. Then send them off to the lab for testing.
Note that the best cortisol saliva tests will test DHEA as well as cortisol, and will have reference ranges that don't include zero as part of their "healthy reference range" because healthy people never have zero cortisol. Another thing is that the test machine must be able to measure really small amounts of cortisol rather than saying your level is < 1.5 or whatever.
Please note that blood cortisol and saliva cortisol are not measuring the same thing, and won't necessarily come up with similar results.
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