I was found to be thyrotoxic in 2015 after gloriously losing 70 pounds while in nursing school, stressing out ( which considering I was going to college for the first time at 50 years old, had 2 teenage boys, handicapped spouse..stress). I was walking 3 miles a few times a week, nit eating that much, taking stairs instead of elevators, etc. weight loss seemed awesome after years of being over 200 pounds. Sooo.. they irradiated my thyroxin “hot” nodule in 2015. Started having issues with dry mouth, sensations of oral tissue sloughing, burning tongue that felt swollen and I was biting down on it at night. Sometimes couldn’t taste anything but super sensitive to textures, like fried chicken (slimy or tough meat) I’d just spit it out. I was told it had nothing to do with the radiation?? Really? Odd how it started just weeks after the treatment.
Now they give me thyroxine to reduce growth of 3 nodules, not the same symptoms. My weight is back of course. Depressed. Sensitive to cold, sluggish, fatigue, sleeping too much, anxiety… supposedly I also have ADHD (poor memory, difficulty focusing, get frozen in anxiety and can’t get anything done.). Hate it. Dr is happy with the labs so nothing else concerns him.
Just ran out of levothyroxine with no refills since I haven’t had a visit in some time due to Covid restrictions. I’m just not feeling I’m getting appropriate treatment and not feeling healthy and vibrant..ugh.. my last tab was like 1.2 with thyroxine. Now I’m off. Haven’t called for follow up appointment.
Anyone relate? Is it thyroid? Or ADHD? Anxiety? Etc. or all the above. I’m on meds for all but don’t really feel any better.
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Kalin9955
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I have a hot nodule but not had RAI (Radio active iodine). I’m currently on carbimazole the GP monitors my levels and when I have made arrangements to undergo treatment I’m to re referred……I might wait.
“Dr is happy with the labs so nothing else concerns him”
What has he actually tested?
Dr might have only tested TSH - the pituitary hormone which stimulates the thyroid to produce hormone.
Drs assume if it in range so must the levels. Not true. Once hyper the TSH becomes unreliably down regulated and as your thyroid has been partly destroyed by the RAI substance your thyroid can’t exactly be stimulated sufficiently any way - that’s why you need the replacement.
Doctors don’t seem to understand this and believe if the number say you are well you can’t have symptoms!
See what been tested. Ask practice reception for printed results with ranges or see if you can view results via online access.
In the UK you are legally entitled to your results. - Please put country in profile so we can offer applicable advice.
How much levo were you taking & how long ago did you stop? Do you always take same brand?
For full thyroid you need TSH FT3 FT4 TG & TPO antibodies Folate Ferritin B12 & Vitamin D.
If nutrients aren’t optional the levo won’t work well & convert to adequate FT3 levels. Optimal is not same as being in range.
Book blood draws first thing in morning after fasting and delay dose until after gives highest TSH & lowest FT4 and most consistent result.
Avoid supplements containing biotin as this can cause interference with testing & skew results.
If in UK Doctors & lab dont always agree to tests everything necessary - Epsom we often use private options.
Your symptoms suggests you are under-medicated, ADHD can be worsened by low thyroid levels.
Dry mouth & altered taste is reported after RAI but doctors say this is only a slight possibly with extremely high doses given in cancer treatment not lower doses given for nodules and therefore dismiss it.
Burning mouth often associated with low B12. low nutrients common with low thyroid & lowers TSH.
Low thyroid levels can cause thyroid to swell, so any nodules will also swell. Levo can help reduce swelling but doesn’t reduce growth of them. Levo only replaces the thyroxine levels the thyroid can no longer make itself.
Doctor should be able to reissue prescription. Not acceptable to refuse a prescription and refuse an appointment to retest levels.
I am in the US. Dr has not refused to see me. I just haven’t called back to make an appointment as I’m not confident with his treatment method. My b 12 was tested and was within normal levels. I feel certain all the oral annoyances are from radiated iodine. You are correct..”oh it can’t cause issues with that low dose.” Well, it happened and with a very hot nodule…my tag was 0.006 when first found on random labs! I had insurance so was able to proceed with the iodine uptake test, and then the treatment. The left side of my thyroid was not even seen by radiologist commenting “thyroidectomy to left lobe?” So, I don’t know if all that’s working on its own again or not. I had 1 nodule at the time. In 2020 I asked for check on it since I’d lost touch with my endocrinologist and had no follow up afterwards having taken another job and switching insurance. So after seeing him said I had 3 nodules now. But clearly my symptoms of weight loss were not the same. I was afraid of cancer. He said it’s rare, I could have needle biopsies but even they can miss it and be incorrect.
What is your background education? How long have you had a hot nodule? Do you have the systems I had, severe stress, anxiety, weight loss etc? Do you know how large yours is? The hot one was close to 3cm x 2.5cm. Now I have two on right ( old one dead?) and one on the left side now, similar size with sonograms revealing very little change from first discovery after two years.
Meds ran out about 3 weeks ago…I don’t know if I need to find someone else or what?
Sorry. TSH was 0.006 when first discovered on general labs in 2015. They checked t4, free t4, etc, all were fine he says and I e seen reports just do t recall where I put them right now.
TSH 0.006 was very low but T4 & T3 were within range? We’re they very high? If your levels weren’t thyrotoxic you were treated based on low TSH alone. RAI to make TSH to respond is a drastic action.
I would book an appointment & blood test as soon as possible. Can you arrange lab tests yourself? I have arranged my own thorough testing but we need a NHS or private Doctor to issue medication. You may have different options. EG NDT / Lio (T3). They are difficult to obtain in UK.
With a hot nodule it takes over the function of the thyroid & can suppress or minimally function. My TSH has been suppressed 7 years in total. The images from uptake scan are quite distinct.
The RAI would likely have destroyed some of left lobe but the material would have been mostly absorbed by the functioning areas.
It’s possible that the left lobe might have began functioning once the nodule was destroyed, or you may have cold nodules which never functioned. You would need another uptake scan to be certain either way - as ultra sound only detect nodules does not determine function.
I do not have a medical education, this is a patient to patient forum.
My nodule was detected in end of 2018. The scans reveal its around 5cm. I hadn’t noticed symptoms as they developed so gradually & I lacked energy but had uncontrollable appetite so gained weight. I know from looking through records my levels had been climbing for nearly 5 years - it wasn’t followed up at time & I had no clue.
I currently take 10 / 5mg carbimazole alternate days. My history is in my profile.
Oh no the TSH level was when I was hyper thyroid and other labs supported it. In 2015. The other levels of t3 t4 etc were more recent levels after ablation. He said no wonder you feel crazy. He said people are in the back of institutions because they have what you have but no one checked it.
I too have had RAI but for Graves Disease in 2005 and I too have had similar issues with my mouth, and found no help nor understanding - details on my profile page.
As I understand things RAI whether as a pill or a drink, slowly burns out your thyroid gland in situ, and ultimately totally disables the gland, rendering you, the patient, primary hypothyroid and requiring thyroid hormone replacement for the rest of your life.
The thyroid is a major gland, the body's engine, and responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T3 is around 4 x more powerful than T4 and it is T3 that the body runs on - not T4 :
T4 is a storage hormone that needs to be converted into T3 by your body :
Your ability to convert T4 into T3 can be compromised by low levels of ferritin, folate, B12 and vitamin D plus we need to keep an eye on inflammation levels and any physiological stress ( emotional or physical ) as depression, dieting and ageing can all play a part in the conversion of T4 into T3 .
Obviously we can't control everything that's gong on around us but RAI is known to trash vitamins and minerals so at least we can try and shore up and supplement were ferritin, folate, B12 and vitamin D are not at optimal levels for someone after RAI thyroid ablation.
So first and foremost we need to see a TSH. T3. T4. plus inflammation and ferritin, folate, B12 and vitamin D results and ranges :
It seems to me you are being treated independently for several classic symptoms of one health issue - primary hypothyroidism caused by RAI thyroid ablation.
You will likely feel much better when you are treated with full spectrum thyroid hormone replacement either with the addition of T3 to your T4 medication or by switching to Natural Desiccated Thyroid which contains all the same hormones as that of the human thyroid gland.
You can't afford not to take your thyroid hormone replacement medication daily :
You cannot get better without medication - it's likely not keeping you well, but without it you will become even more incapacitated.
Hello Penny, thank you for your knowledgeable explanation. I’m wondering why my endocrinologist doesn’t have me on something more therapeutic..the type of desiccated thyroid you mentioned, is that a prescription medication or something I can buy over the counter! Wow it’s exciting to me to hear that’s their a reason and hope. I e just never felt I had the outlook an energy most other people seem to have!! I appreciate your information and it lines up with others on this forum!! Thank you so much. I’m gonna find those supplements and make an appointment soon and see what the dr says. Might even show him your comments!!whew would be nice to feel normal. I’m really struggling with short term memory and focus. Add methylphenidate has not been helpful just makes me feel more anxious. Maybe it’s all tied to thyroid health. ? Your comments are appreciated and welcome. He did check t3 t4 but assumes if I h d enough free t4 it’s converting but never mentioned the other supplements. My primary checked D and b12, so at least he knows. Took high dose D for a couple months only.
Were you diagnosed with Graves Disease as this is an auto immune disease and as such for life.
All that this RAI treatment has done is flip you from hyperthyroid to hypothyroid which is considered easier to treat by the medical profession.
If so you might like to read around on the Elaine Moore Graves Disease Foundation website which is Stateside. :
Elaine has had RAI, and finding no help with her continued ill health started researching this poorly understood and badly treated auto immune herself and now 20 odd years on has a world wide following of patients, their families and loved ones using her website.
There is a forum, much like this one and you might find this of help in finding a recommended endocrinologist within your zip code and time zone.
P.S. Thinking even if not diagnosed Graves I'd use Elaine's site to ask for recommendations of a doctor open to prescribing T3, T4 and or Natural Desiccated Thyroid.
You still need to maintain your ferritin, folate, B12 and vitamin D at optimal levels, whatever thyroid hormone replacement you choose.
No, never given a dx for Graves or anything autoimmune. I’ll check out her site anyway as you recommended! I think I’d eat healthier if I felt better, and vice versa. Thank you so much for your info. Why are endos especially so uninformed???
Well that's the 64billion $$$$ question and why we are all here trying to help other.
Ok - eat fresh and cook from scratch - and once you have the full thyroid blood test result and ranges we'll be happy to talk you through what your next best steps are to be better heath.
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