Hello, I am new here. Thanks for having me!! I have a couple questions.
1. I've always been Hashimotos/ Hypothyroid my whole life, then recently I switched to Graves. Has that happened to anyone else? My endocrinologist said I may have had Graves to begin with that turned into Hashimotos/Hypothyroid.
2. I have a surgery coming up for a Total Thyroidectomy. I am unable to take antithyroid meds as they make me sick. Has anyone has this surgery?
Thank you guys!!
It’s quite unusual to have both Hashimotos and Graves but Certainly possible. Both are autoimmune but do affect the thyroid differently.
With Graves the immune system mistakenly targets & stimulates the entire thyroid gland and causes it to become overactive. Anti thyroid Medication can often lead to remission but relapse is possible too. With hashis is the immune system mistakenly attacks and destroys the the thyroid and it’s the dying thyroid cells releasing their stores of hormone which resulting in a temporary hyper swing but ultimately results in Under active thyroid.
So while it’s very common that hyperthyroid can eventually be diagnosed as hashis, it’s far more unusual for under active thyroid to become hyperactive.
Unfortunately doctors see low TSH conclude Graves and proceed to definitive treatment. Radioactive iodine is the NHS preferred treatment, then surgery.
Do you have access to your past blood test results? TSH, FT4 and FT3. Also very important to test vitamin D, folate, ferritin and B12. You must also ensure you have been tested for antibodies (TPO for Hashi Trab/TSI for Graves) to confirm diagnosis/s.
When and what doses of Levo did you take and which anti thyroid medications did you try?
Hello. Yes, I’ve had blood test to confirm both Hashimotos and Graves Disease.
My TSI was 141 Desired result :<140% baseline
TSH .0005
My Vit. D, B12, iron all very low.
I admit it is strange.
I’m on Methimozole and Antenolol, but I do not tolerate them at all.
Were you offered PTU? An alternative anti thyroid.
Any medications \ supplements should be started with a time gap between them, in case one causes side affect, did you do this?
No. My doctor said it has too many side effects. My white blood cell count is low as it is. I don't like being on all these drugs. The side effects for me haven't been good. This the total Thyroidectomy. My husband said no to the RAI, which I'm in agreement beith that. I'm not comfortable with putting radiation in my body. But in the US, all they offer is PTU, RAI, Methimazole (which I'm on) or a Thyroidectomy.
Hi,
I recently had a conversation with my endo about this because of some of my results and apparently you can have Graves and Hashis but it's quite rare.
I have had Graves for around 8 years now and found the side effects of Methimozole (I know it as Carbimazole) unbearable.
The last two times I have needed medication I have used PTU and haven't had any of the side effects I had with Carbimazole - no side effects at all in fact - and it worked well to get my levels back to normal.
I have been pressured many times by doctors to have RAI or surgery but feel that it has to be a last resort for me due to the life long side effects of the treatment.
How long have you had Graves for? Elaine Moore's website has lots of good info about Graves pre and post surgery and for what it's worth I think its essential to know exactly what it is you're signing up for with surgery before deciding to go for it. I know how horrible it feels to be unwell and hyper but I see it from the perspective that I have an autoimmune disease, removing one of the symptoms by surgery or radiation (thyroid) isnt going to cure it. I manage my illness using supplements, lifestyle and dietary changes, which has taken a lot of trial and error and research on what works for me personally.
Hello! Yes it is quite rare to have both! My husband and I joke I’m an over-achiever!! I was just recently diagnosed with Graves, although the other day my Endocrinologist said I may have been Graves to begin with and then switched over to Hashimotos. Personally, I just don’t like being on the anti thyroid meds and the side effects or possible side effects. I have been Hashimotos/hypothyroid since 1987. I’m used to taking Synthroid and managing my TSH. My body swings a lot from hypo to hyper. Plus, my thyroid is thoroughly damaged. I am taking supplements and will continue to, as well as eating a certain diet to keep down inflammation. I don’t want to live the rest of my life fighting not to be Graves/hyperthyroid. I know I’ll still have both autoimmune diseases, but I know that symptoms and TSH is more manageable with a total thyroidectomy. But each person has to do what they feel is best. We've prayed over this as well our church and we strongly feel this is the direction the Lord is leading us. I have been looking at Elaine Moore’s website. It’s a great resource. She pretty much is giving me same advice as my holistic doctor, which is good.
I completely understand and agree. I think for me, the unknown of hypo scares me as I've only ever experienced hyper and it's taken me this long to learn how to manage it to an acceptable level.
I guess it will be familiar territory for you, having lived with Hashis for so long.
I sincerely wish you well with your surgery and your recovery xx
Agreed! I've been Hyperthyroid many times and each time, it sends me over the edge. Too many symptoms and anxiety. But, yes, I'm very used to Hashimotos/hypothyroid. But thankfully I've always been able to control it easily with Synthroid. I get blood taken every three months to stay on top of it. Thank you so much for your kind words! I truly hope that you are able to keep your thyroid balanced and feel well!! God bless you!!!
Thank you 😊
I can understand why you choose surgery over RAI. TSH alone inadequate for determining dosing levels. you need FT4 & 3. Also 3 monthly testing is quite long. Our recommended guidance is 6 weekly, especially after dose adjustments.
Oh, for sure my Endocrinologist will test those as well. I'll be tested monthly until my thyroid is stable and then I will go to every three months.
Hello Nikkithemom
Welcome to the forum.
I too have Graves Disease but was treated way back in 2005 with RAI and a treatment I deeply regret.
I'm sorry but I've never heard of someone going from a diagnosis of Hashimoto's and being on Levothyroxine to the additional diagnosis of Graves Disease.
Have you been proved positive for the Graves TSI or TR ab anti body and have the medical evidence ?
Totally agree with what has already been said and if you haven't heard of the Elaine Moore Graves Disease Foundation you might like to dip in, and ask your question, as Elaine Moore is a medical technologist by profession, and has Graves and since her health issues since treatment with RAI has spent her time researching and writing on thyroid auto immune health issues and she does answer questions personally if you so desire.
Keep us in the loop, as we might all learn something.
Hello. Yes, I’ve had blood test to confirm both Hashimotos and Graves Disease.
My TSI was 141 Desired result :<140% baseline
TSH .0005
My Vit. D, B12, iron all very low.
I admit it is strange.
I’m on Methimozole and Antenolol, but I do not tolerate them at all.
Hey there Nikkithemum
Do you have a blood test of your T3 and T4 and TSH levels prior to taking the AT drugs?
Pennythepensioner - sorry, couldn't resist !!
No worries! Yes, my T4 and T 3 were elevated. Then on the drugs my T3 went down, but my T4 stayed elevated. Now my T3 and T4 are in normal range and my TSH has gone up from .005 to .01.
Do you have the actual numbers please ?
T4 2.4. Reference range is .8 - 1.8
T3 5.6. Reference range is .43 - 2.91
OK so these are before AT drugs and what was the TSH and range ?
Where are you in the world as I'm not sure I've seen ranges like this before ?
Yes these are the test before I started the anti-thyroid meds.
TSH- .01. Reference range .40-4.50. after this my TSH went down even more, but then came back up a bit.
I am in America. California.
Where are you?
UK - did you ask Elaine Moore as she's Stateside and will know in much more depth the nuances of both auto immune diseases, Hashimoto's and Graves, and the medication interactions and also what other drugs are available in the USA.
She's best placed to answer you in your own country ?
I'm still thinking, but am inclined to think I'm out of my depth, which is quite easy :
Thanks for your help, I appreciate it!
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