I was diagnosed with Graves Disease in June 2024. My free T4 was 2.3 (which an urgent care doc said was “not that bad”)and I had a thyroid scan. I was shaking, sweating, weak, had brain fog, and pooping like 10x a day.
I was proscribed 10mg methimazole. In six weeks, I gained 30lbs I was miserable My labs stated I was then mildly hypothyroid. My endocrinologist apologized and cut the dosage in half. She said wait six more weeks. Two more weeks later and my throat and tongue swelled. I was sleeping g up to 14hrs a day. My endocrinologist assured me we had to wait for a few more weeks. Never at any time did she admit that this was an allergic reaction. In six weeks, I was extremely hypothyroid. Go figure.
I was then put on Levothyroxine 75mcg by three weeks, I was in pain, brain fog worsened, lost 15lbs, was starving all the time. At six weeks, I was mildly hyperthyroid again. Again doc cut the dose in half. Six weeks later my free T4 was 4.0.
In December 2024, Endocrinologist took me off all meds for a month. She assures me that killing my thyroid is the ONLY option. I’m again shaking, sweating, achey, can’t sleep, but at least I’m not pooping myself anymore.
I’m now trying acupuncture. I don’t have any faith int the prescription meds now. Im allergic to half of them. Why would I believe they’d work after she killed my thyroid?
Has anyone had this experience? My endocrinologist says she has never experienced this and I can’t find anything online about it.
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JeepGirl3
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Graves is a poorly understood and badly treated Auto Immune Disease that tends to only get diagnosed when your immune system starts attacking your thyroid and / or eyes.
When the thyroid malfunctions all manner of symptoms an be caused - and recognise some from your listing of your symptoms.
Can you please share your TSH + T3 + T4 results and ranges at diagnosis along with the antibodies found in your blood stream - probably written as TPO / TgAB - TSI - Trab - or a TSH Thyroid Receptor ab - with readings and ranges/cut off numbers ?
Quite why your body has turned and started attacking your body is of course another question and Graves is generally diagnosed once the immune system targets the thyroid and / or eyes, as these are both major organs which we would prefer to live with and ' colours ' who we are -
with the thyroid synchronising your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
With Graves there can be a genetic predisposition with maybe a family member, maybe a generation away from you with a thyroid health issue and though no two peoples journey with Graves is the same, stress and anxiety seem common triggers - with some diagnosed after a stressful period in their lives, some after a car accident. others after the unexpected death of a loved one - others - who knows !!
Graves is considered life threatening if not treated and the treatment is with an Anti Thyroid drug and all this does is ' buy you time ' while we wait for your immune system to calm down again and hopefully your thyroid reset itself without the need for any drugs.
If the UK we have 2 different AT drugs - is it the same in the States - were you switched to an alternative and again, couldn't tolerate the AT drug or was it at a dose that didn't off set enough the symptoms of hyperthyroidism being tolerated ?
I detail below the most current research we have -
I found the most well rounded of all I researched is that of Elaine Moore - books and website. Elaine is Stateside and within the website there is a section on holistic and alternative treatment options and there is a forum much like this -
where patients get advice and possibly you may find others in your zip code / time zone - who can recommend whom they have found able to trust with their health issue.
I believe Elaine is not well and why you need to access her website via this ' archive ' route - and hope maybe the forum is still running with other Admin ?
My mother has Lupus and half the family has some sort of auto immune fun I also have osteoarthritis I quit smoking in January 2024 and then all of this started that April
Can you confirm the ranges for each of these tests… likely if from the same lab they will be the same over time, but be aware that they can easily be different as well.
If you’re not familiar with ranges, you will from them after the result on each line of your blood test results.
Also note as many people here on this forum are in the UK, their labs have different units of measure and therefore different ranges.
For example, it’s likely your Free T4 has a range of something like 0.83 - 1.43 ng/dL. Or it could be 1.4 - 3.8 ng/dL or something in that ballpark.
Share the range and units of measure for all the results you shared.
You will learn that it’s not about “being in range “ but more about what percent through range you are.
It seems like a small detail but its impossible to evaluate without.
Hi, Sorry to learn of your difficulties. It utterly amazes me that your Endo appears to have little or no knowledge in respect of T4 and its effects. What do they get taught at school?! I would suggest finding another Endo. I have not read any other replies but do know that this forum will provide you with excellent advice and more fully than any I can offer.Eccleston
I’m in the US. I don’t have many choices for doctors, because I don’t make enough money to afford good insurance (up to $800/month) so I have to go with whatever doc takes my state insurance
If this forum was capable I would give screenshots of all of my labs. But it only allows one pic per post.
Also, the inciting event that caused the diagnosis was April 2024 after two years menopausal, I suddenly had an extremely bad menstrual period. I went through super tampons in an hour. ER didn’t do much, but diagnose “dysfunctional uterine bleeding.” I did find a good gyno. He’s the one who did the initial blood work. Two weeks later, I had a D&C. I have not been sexually active since 2015, and had a tubal ligation in 2001, so I definitely wasn’t having a miscarriage. I had to wait until June to get into an Endocrinologist. I’m still waiting 6more months to see a GP (after already waiting a year).
had a video appointment with my Endo today. It was odd. My January appointment she had insisted that there were zero alternate medications to methimazole and my only option was irradiating my thyroid. She was 100% against any holistic treatments.
Today, it was like she was a different person. At first she suggested I go back on mathimazole and I reminded her it made my throat and tongue swell. She said, “oh yes,, that is dangerous.” (Mind you, she made me keep taking for 6wks it while I was having those reactions last September/October). So she’s putting me on PTU. And now she loves that I’m getting acupuncture. She still wants to kill my thyroid, but at least she was willing to come up with another option.
Mind you, I was prepared with six links of articles listing PTU as a med, that swelling of throat and tongue was a methimazole allergy, that acupuncture crime was helpful for Graves, the lowered quality of life after radioactive iodine treatment, etc. I was prepared to have to argue my case and demand a second opinion from a specialist. I still may have to in the future but wow I’m just amazed
I haven't read your whole thread, but just wanted to pass on some generic information that might help you to make sense of your results.
TSH = Thyroid Stimulating Hormone - this is produced by the pituitary (in the brain) and it tells the thyroid what to do.
Free T4 = This is the main hormone produced by the thyroid itself, but it doesn't do much. It has to be converted into T3 within the body to become active.
Free T3 = This is the active thyroid hormone required by every cell in the body. 20% of the body's supply is produced by the thyroid and the rest is produced by other organs by converting T4 to T3.
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Hyperthyroidism - also referred to as "overactive thyroid". In this condition your thyroid produces too high a level of T4 and T3 - or sometimes just too much T3.
Hypothyroidism - also referred to as "underactive thyroid". In this condition your thyroid produces too low a level of T4 and T3 - or sometimes just too little T3.
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When being tested :
In hyperthyroidism you would normally see very low TSH, and probably too high Free T4 and too high Free T3.
In Hypothyroidism you would normally see very high TSH and probably too low Free T4 and too low Free T3.
If you are hyperthyroid and you are over-treated for the condition your results would start to look like those expected in hypothyroidism.
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Problems you could have in thyroid disease generally...
Doctors tend to over-react to people's results, so their results swing wildly from appearing to be hyperthyroid to appearing to being hypothyroid.
So someone with hyperthyroidism might find their treatment level raised too high so that they then appear to be hypothyroid. But that isn't the case - they are being over-treated for hyperthyroidism they aren't hypothyroid.
The reverse could happen - someone with hypothyroidism might find their treatment level over-treated and would find themselves appearing to be hyperthyroid and doctors freak out and reduce treatment too much.
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Results you might see in hyperthyroidism :
TSH - Very low
Free T4 - Could be anything, but usually becomes too high
Free T3 - Very high
Results you might see in hypothyroidism :
TSH - Very high
Free T4 - Usually too low
Free T3 - Very low
Symptoms come from the Free T3 - too much and the patient has hyper symptoms, too little and the patient has hypo symptoms.
Sadly for many thyroid patients doctors pay little attention to T3 and dose according to TSH, which leaves many people over or under treated for whatever their condition is. TSH doesn't change as quickly as T4 and T3, which doesn't help.
t3 600 (76 - 181) ng/dL 499.05% : Over range[I'm guessing that this is Total T3 rather than Free T3]
June 2024:
TSH 0.01 (0.4 - 4.5) -9.51% : Under range
free T4 0.05 (0.8 - 1.8) -75% : Under range
Free T3 2.4 (2.3 - 4.2) 5.26% : In range
TRAB 26.92
TSI 246
August 2024
TSH 1.43 (0.4 - 4.5) : 25.12% : In range
Free T4 0.3 (0.8 - 1.8) -50% : Under range
free T3 2.0 (2.3 - 4.2) -15.79% : Under range
October 2024:
TSH >150 (0.4 - 4.5) >3648% : Over range
free t4 0.1 (0.8 - 1.8) -70% : : Under range
free t3 <0.5 (2.3 - 4.2) -94.74% : Under range
December 2024:
TSH 0.02 (0.4 - 4.5) -9.27% : Under range
Free t4 3.3 (0.8 - 1.8) 250% : Over range
January 2025:
TSH 0.01 (0.4 - 4.5) -9.51% : Under range
free T4 4.0 (0.8 - 1.8) 320% : Over range
free t3 >20.0 (2.3 - 4.2) 931.58% : Over range
February 2025: 1 month off all medication
TSH <0.01 (0.4 - 4.5) < -9.51% : Under range
free T4 4.4 (0.8 - 1.8) 360% : Over range
free T3 >20.0 (2.3 - 4.2) 931.58% : Over range
.
I've rejigged your results so that they are all in the order TSH, Free T4, and Free T3 just because that is what I'm used to seeing. And I've added what I think are the correct reference ranges based on the information you've given earlier in the thread.
I've also added the percentage through the range. As a first goal your doctors should be trying to get your Free T4 and Free T3 in range, so the percentage would be somewhere between 0% and 100%. As a second goal your doctor should start fine tuning and help you to find whereabouts in the range you feel well. It can take a long time to reach each goal because doctors so often over-react to results, and they are taught to think that TSH is the most important result. But patients who have struggled to feel well think that TSH is the least important and Free T3 is the most important.
If the percentage is below 0 then the result is under range,
If the percentage is above 100 then the result is over range.
It would be helpful if you could list your dosages of methimazole at the time of each test.
I don't think your doctor is doing very well in terms of dosing your treatment.
There is only one Free T3 in range in June 2024 (and it is only just in range, and needed to be higher). I'm guessing that your doctor increased your methimazole after the June 2024 test?
And there is only one TSH in range in August 2024 . I'm guessing that your doctor increased your methimazole after the previous test to try and force your TSH into range. She succeeded but in the process your Free T4 and Free T3 reduced so much you must have felt very hypothyroid.
In October 2024 your results were showing as very, very hypo and you must have felt absolutely dreadful.
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Update on my thyroid medication 🤦♀️
Irritability and hyperthyroid 
Newbie! 
