Hi New to the forum, and could do with some advice
Am female aged 60
After years of symptoms - fatigue/dry skin/hair loss/palpitations/etc I finally got diagnosed with Thyroiditis last November.
I have raised TPO antibodies and a goiter with nodules (I had an ultrasound).
My GP eventually organised a TSH test this March, which came back as normal - 2.57 mi/ul, so said to 'wait and see' so no treatment.
Since then I feel so much worse. I am tired to the point of collapse, go between sweating and feeling cold, tingling all over, have Tinnitus, constipation, muscle pain/weakness etc etc
I have a high pulse rate and palpitations if I eat anything with iodine (I think) so have cut down on that.
I have also cut out Gluten and Dairy and Soy, which has helped with my joint pain.
My GP is useless, I can't get an appointment for weeks, then it is a phone consultation.(UK)
It seems I got the diagnosis then was left to get on with it, and honestly I would if I didn't feel so ill.
Most of the time my symptoms seem to be underactive, until I have too much iodine which then causes hyperthyroid symptoms, it's confusing.
I'm not sure if this is Graves disease, or Hashimoto's or neither, so could do with some advice on how to proceed.
For reference my Blood Results:
TSH 2.57 mIU/L
FT4 15.2 pmol/L
FT3 5.3 pmol/L
TPOAb 158.4 kIU/L
T4 98 nmol/L
TgAB 73 kU/L
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Justine_Case
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Hashimoto’s also called “autoimmune thyroiditis” is same condition. Doctors in UK use term autoimmune thyroiditis, but ignore the autoimmune aspect. The Immune system attacks thyroid which is causing the issues.
Sometimes in the early stages the damaged cells release hormone stores and so causes high levels of hormones (but not from overactivity of the thyroid).
Scans are quite accurate as detecting the damage and nodules are common too, even in healthy thyroid.
Graves causes continuous over active levels. The TSH becomes suppressed & FT4 & FT3 become very high.
Your high TPO antibodies confirms autoimmune (hashis). The immune system can’t be treated but you will need to be monitored as your thyroid will over time struggle more & produce less.
Once FT4 / FT3 become below range doctors are willing to treat & replace the low levels, or if TSH becomes very over-range.
As you have positive TPO you have a stronger argument to start as soon as levels start to trend downward.
Do you take extra iodine? This might cause issues & worsen hypothyroidism. Low iodine can cause both hypo or hyper. A normal diet should provide sufficient iodine levels. Iodine deficiency is unusual, supplements should only be taken if known to have a deficiency.
Do you have ranges for results? ranges vary between labs.
Also important to test folate, ferritin, B12 & vitamin D.
When you test book early appointment & fast overnight. This gives higher TSH lowest FT4. & gives consistent results.
No I don't take extra iodine, in fact it seems if I have anything that contains iodine - sea salt, potato skins, kale, spinach etc I have these 'hyper' responses - High blood pressure for a short while, palpitations and breathlessness.
As a result of this, I now limit my iodine intake.
Last year before my diagnosis, I ate some pizza and ended up at the Urgent Care Unit at my hospital
My blood pressure was all over the place, I was sick/upset stomach and I had a very high pulse rate.
So no more pizza! now I think it may have been the iodine/sea salt in that pizza which triggered this reaction.
Anyway, what you have said makes sense regarding Hashimotos I just wish the Doctors had taken time to explain things to me, I have had zero feedback/help since my diagnosis.
I understand Doctors are busy, but when their patients are really struggling, it would be good to get some advice.
My vitamin D was very low a couple of years ago, and I was put on prescription D3, I will ask to be re tested for that and the other tests you mentioned.
It is not uncommon in this community that patients have "normal"-looking labs and are fully symptomatic. Your TPO Ab and TG Ab clearly indicate your autoimmunity is overactive at the moment, reflecting underlying inflammation. Try to focus whatever limited energy you have on learning about, and tackling "autoimmunity" & "inflammation".
Good job you've already gone gluten- and dairy-free. Soy can be OK, as long as it's organic, and in whole food / minimally processed forms (milk, tofu, tempeh, miso). Elissa Goodman had cancer and Hashi's and is in remission and meds-free. These food are on her "Autoimmune hacks".
Soy lecithin, commonly found in chocolate bars and processed foods, is definitely NO NO.
Since you have been paying attention to how diet and nutrition can influence your symptoms, you may find Dr Brooke Goldner helpful. Her protocol is the simplest I have come across so far, and the testimonials on her free course speak volumes.
Hope you have a trusty high speed blender, and you still have enough energy left to operate it. If not, find help. Supermarket green smoothies are no substitutes.
Indeed, vitamin D3 is important for regulating immunity, among its many physiological functions.
Prescription vit D3 is probably in tablet, low dose, form. Best you get high dose, oil form, for optimal absorption. 2000 -5000 IU/day is maintenance dose. If you are low, start with 10000 - 30000 iu/day to ramp up. 30 000 iu/day is ~ 20-30min of summer sun with maximal skin exposure, not toxic (judsonsomerville.com/).
Vitabay is what I have been taking, good quality. My blood tests show good absorption.
SlowDragon, that is hugely helpful, I will look into getting my vitamin levels checked.
Seems like I have a lot to learn. I just want to get some of my old energy and life back.
The whole situation could have been made somewhat easier, if my GP had taken my complaints more seriously, instead of trying to put me on antidepressants!
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