I need some mental support and some help since this is a weird condition.
- I had my son Sept 13, 2015 ♥
- Found out I had postpartum thyroiditis
a.) 6 months Hyper thyroid then immediate drops to Hypo thyroid for 6 months. -No medication for it since my thyroid levels would change weekly.
b.) I was almost into my Hypo stage when I got to see a specialist and they gave me something to calm my heart rate down, which allowed me a few weeks a sleep before going Hypo. Then the year of that was over.
- Afterwards and my thyroid showed up normal, I THOUGHT I felt better. But I noticed changes of my body slowly in 2017.
a.) First was migraines - 7 days long (3 days on one side, 1 day break, 3 days on the other side) I would get them 1-2 times a month. I take rizatriptan for it now.
a.) All my tendons twitch a lot.
b.) My mental state was still not as it was before (thought it was being a mom)
c.) I used to be able to sing on key, now I have pitch issues and trying to adjust hurts my neck and throat.
d.) Talking in general hurts after 10 minutes
e.) I felt sick all the time (flu, painful bedridden menstruations, joints hurt, just couldn't move a lot of the time.)
f.) Depression- Brain Fog
g.) My anxiety, OCD, ADHD, and Dyslexia got worse
-Went to doctors May 2020 and after a lot of blood work, we found out I had Anti-Nuclear Anti-Bodies are attacking my thyroid. What we did.... nothing, my thyroid levels were normal. I mention to him my throat hurts and I went to a specialist, and he put a tube down my throat and saw I had silent acid reflex. I do take stuff for that and avoid foods to trigger those symptoms. Still have throat/ inner neck pain.
2021 around June, I noticed I was having trouble breathing and I would wake up from chocking or trying to get enough air. Had an appointment but it was a week away so went to the ER and found out I was hyperventilating and having panic attacks. I recently had my thyroid check and the hospital just had come back with the results and everything was in the normal levels.
Went back to my main doctor. I am on medication for my depression for years so they just up the dose, which helped. For helping my chest tightness and breathing issues my doctor gave me 5mg Valium to take in the morning and 5mg at night. Helps but not much.
I was told there was nothing else to do, the medication for lupus can be used but the symptoms of that medication is worse than my condition, plus covid being around it would worsen my immune system. My doctor believes that I should not feel any pain from my Thyroid being attacked. But I feel soar and pain internally on my front right and left all the time and swallowing pills is hard.
I also just got over Covid...so... who knows what aftermath that is going to add. Although I found it weird both when I had the shots and the actual covid, my joints and muscles felt AMAZING. Everything else was bad about it. But everyone else kept talking about their aching muscles and joints in my family that got both the shot and Covid. Made me wonder what if my body stopped making anti-nuclear antibodies so it could focus on Covid? So to me, they felt better? When covid was over the joint and muscle pain comes back.
I'm schedule for my next thyroid check on Dec 13, 2021.
Please, my doctor is wonderful. But I live in a small town and I'm a very special case for him. I feel like a crazy person, I had to quit my job because I couldn't even work from home reliably enough.
Has anyone else have anti-nuclear Antibodies attacking you Thyroid but you're levels are normal? My mom has hypo naturally and my blood-related aunt on my dad side had Grave's disease naturally.
Any feedback would be greatly appreciated! ♥
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GingerShelly
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
He did check for everything. I had 3-4 stages of blood work due to the rabbit hole we were going through. At first they thought I had lupus, then that blood work for that stage came back and showed it was attacking my thyroid.
But every single test related to levels of thyroids showed normal though. So he said we just have to wait it out until I go hypo or hyper. But I don't know what to do during this stage of limbo, that I may be stuck in for years.
A positive ANA result means autoimmunity is at work but does not exactly distinguish which tissues are being attacked. Have you had thyroid antibodies tested TPOAb & TGAb? And if your aunt has Graves you will also need TRAb’s?
ANA’s are commonly found along side thyroid antibodies, just as Graves are commonly found in Hashimotos and vice versa. Hence, after acquiring one autoimmune disease we become predisposed to others such as RA, Sjogren's, etc.
Elevated antibodies can make one feel really unwell, irrespective of good thyroid labs which will have to eventually drop if the attack on the thyroid gland is sustained.
ANA is an autoimmune marker for many autoimmune conditions and there are subtypes, it’s often used for diagnosing Sjögren syndrome or lupus. usually TPO or TG antibodies are used for detecting thyroid autoimmune. Have these ever been tested?
Thyroid function results is what required to see if levels are low and replacement required.
What has been tested? Initially the TSH is tested, a pituitary hormone which signals the thyroid to make hormone. It often rises when thyroid FT4 & FT3 levels are low. So if this is in range it’s assumed the thyroid levels are also in range so you need to check what’s been tested and what the results are.
Your symptoms suggest hypothyroid but the TSH isn’t a fool proof marker it could appear or just be in range but actual thyroid levels be low.
Autoimmune under-active thyroiditis (Hashimoto’s) can often start with hyper phase as the destroyed thyroid (from autoimmune attack) release hormone stores. The condition can run in families as can Graves. It’s also possible to have both conditions.
But it’s the thyroid levels which need treating not the antibody result which fluctuate and do not always correlate to the severity of the condition.
I imagine that by 'anti-nuclear Antibodies' you mean Thyroid Peroxidase antibodies? In other words, Autoimmune Thyroiditis - aka Hashi's or Ord's. Hashi's is when you have a goitre, Ord's is the same thing without a goitre.
Well, strictly speaking, the antibodies are not attacking your thyroid, that is a misconception. It is the lymphocytes, produced by the immune system, that do the attacking. The antibodies just come along afterwards to clean up the resulting mess.
Hashi's - we tend to call both Ord's and Hashi's, Hashi's - is the most common cause of hypothyroidism in the Western world. So, a lot of people on here have it. I have it myself. It is very often triggered by child birth. And usually starts - or more likely first makes itself felt - with a hyper phase that passes quite quickly into hypo. However, it can swing back to false 'hyper' at any time, that's how it works, swinging between the two extremes. But, there can be long periods of euthyroidism (normal thyroid function) in between, when blood test results come back as being in the so-called 'normal' range. But, this doesn't mean that you won't have symptoms. Not caused by the attacks on the thyroid specifically, but by low levels of thyroid hormone.
Unfortunately, doctors have next to no understanding of how all this works - they just don't do it in med school - nor of how it affects the patient. And, they have some very weird, unrealistic ideas about how you 'should' and 'shouldn't' feel. And consider that you aren't truly hypo, and don't need treatment, until your TSH is over 10. When, technically, you are hypo when your TSH is over 3. But, in realisty, you can have quite horrendous symptoms with a TSH of 2, because it isn't the TSH that causes symptoms, it's low FT3.
So, always get a print-out of your blood test results - if you can't get to read them on-line - and keep your own records. Note levels, and your symptoms at those levels, and when you finally get put on thyroid hormone replacement, note your dose at the time of each test. You will find that information invaluable later on.
Doctors often rely on finding an elevated TSH which is not a reliable test, especially if you have thyroiditis, a period of hyperthyroidism can keep TSH low in the long term. You need to have TSH, fT3 and fT4 all measured, TPO an dTBG antibodies might be useful also. Check if your doctor has checked TSH, fT3, fT4 (all three), if not I suggest you seek out a private test so you have the numbers before your appointment.
I would resume any foods you are able to tolerate, only cut out things that you know cause a problem. You may find a magensium supplement helps with your gut problems.
Thank you! I do try foods. It can either gut pain or migraine. Usually both.
I take a women victim supplement. I do believe my Dr. Tested for all theee. He was also my OB doctor and I live in a small town and he got a award for best practice in our state. He knows my body more than me lol
Can light sensitivity be a symptom? Even when I don’t have a migraine my eyes hurt. I have to close my curtains, hate driving.
I also noticed my sleeping is getting different. I usually sleep a lot. Now I’m popping out of bed at 4am but don’t have energy to do anything.
Thank you guys for the help. Mostly I just need help to deal with the chest pain and if this could be the cause of my vocal pain.
Due to this I no longer sing in contralto range and I actually sing low tenor… also make me sad to sing songs. But if I could sing without the pain I would have some cool ideas of songs to do. Since I still sound like a female when I sing (thank goodness)
Any other eye symptoms? Dry, gritty eyes? Puffiness, redness pain especially when moving? Doctors often only think of Thyroid Eye Disease is associated with Graves’ disease. But can occurs without.
Is it possible you are over active? As losing weight and not sleeping well (insomnia a common symptom) As well as TPO & TG antibodies positive TSI or TRab are deemed evidence if Graves.
Important to see specialist (ophthalmologist) if you have eye symtoms. I found an optometrist (sight test store) quite helpful recommending drops and writing letter to doctor for referral.
They hurt when I move my eyes quickly. They do feel strain when moving them left to right more than up and down. I can lose my balance often. Even blinking can hurt. I’ll put my cold hands over them to make them feel better. They can be dry, but they water like mad when I wear mascara.
I do go see an optromitist. I went this august and talked to her about my light sensitivity but I associated eye strain to migraine, that I thought was caused by light sensitivity; so didn’t mention it (also was fine that day so didn’t think about it) I did tell her my eyes are dry so I got good lubricated drops from her. But she said she could really help with eye sensitivity, just wear shades.
I do wear prescription glasses and get my eyes check yearly. I put anti-blue light to help with looking at monitors.
Dry & watery eyes are due to lack of oil. The lipid layer stops to water loss from eye. You may find warm compresses helpful and gentle fingertip massage toward lash line. This unclogs the Meibomian gland which can be blocked contributing to problem.
Speak to your doctors further & see what specialist help is recommended. Different services are available in UK. I found accessing the right help can be very difficult as there is a lack of services & expertise & I have now been on wait list many months.
Have you have thyroid scanned? You have argument as one side is different to other. I had 1 sided swelling, I was initially told it was just a nodule. Later it was discovered it was a large hyper functioning nodule causing elevated levels.
When you say your gut hurts all the time and you can’t put pressure on it, do you mean there is constant aching or throbbing or do you mean it’s tender to the touch?
I also have voice problems since being hypothyroid and have ‘silent reflux’ and acid reflux heartburn when I eat certain foods. I had a long and frightening period a couple of years ago where I could not sing or speak properly at all. I have been a singer for years and now work with my voice for a living so this was extremely problematic for me.
I see your diet is quite limited…personally, I cannot eats grains at all as they will trigger GERD acid reflex symptoms and a very painful stomach that will take 2 to 3 days to settle down even after stopping grains.
From the research i have done and from my own experience, the quickest way to lower gut inflammation, is doing some fasting. Some people with IBD and other gut diseases have excellent results by only eating within an 8 hour window so as to give the gut time to rest and heal. I have personally found fasting extremely helpful, and sometimes fast for 24 hours or longer for even more benefits. Some people also find the carnivore diet excellent for reducing pain and inflammation. I am not suggesting it as a long term solution but it provides respite for some. 🙂
Thank you! I have done some fasting before and did notice the difference. I did it to make sure everything was out of my system and then would try new foods to see how my body handled it.
I do have a few more foods I can eat, I do notice if I have grain (Anything with high Fiber) I have issues as well. But Oat Milk seems to be fine for me, I think it's because of how it's cooked, it doesn't have a lot of fiber. I use it only for my teas and Chicory root coffee, or for cooking. I don't drink a straight glass of it. I just been playing it safe with my food, as we are on a budget, and I don't want to waste money trying new foods that don't work out (Cause no one else is going to eat it).
Theory… my right side (think thyroid) hurts more than my left. Left hurts just not as much. Could one be going hyper and the other hypo? As I had experience both during my year of postpartum thyroid I know the feeling on both sides.is that possible? Could it explain my levels show normal?
I have raised ANAs but I have autoimmune Psoriatic Arthritis, Colitis and Adrenal Insufficiency as well as Hashimoto’s. But your symptoms are very similar to those I suffered from when I started to develop AI so I would suggest that you ask your GP to do random cortisol blood test (but try to get it for first thing in the morning as that is when cortisol should be at its highest).
I used to take 20mg of Omeprazole, a PPI, on a daily basis in the morning but wanted to ween myself off them, after successfully I thought of doing so I started to have a symptom of my neck/throat internally hurting 1/2 between jaw and thyroid area when swallowing which was not like sore throat which I told my GP as I felt it somewhere different where you would expect it to hurt on swallowing. He advised taking Omeprazole for a couple of weeks as he thought it could be acid reflux even without the common symptoms, I did as he said and it went away fairly quickly after a couple of days, whether this was diagnosed correctly or it was a fleeting symptom I am not sure.
Have you been treated for acid reflux at all ? I have had a tender stomach especially on the right side when touching, gall bladder area which even hurt if I took a deep breath, I saw a doctor (GP) who advised an taking an Omeprazole Omeprazole and if no better after an hour go the ER, thankfully it eased. I have in the past when not on Omeprazole had some of your gastric symptoms. I sympathise with you as it all seems at times frustrating to say the least.
I hope you can find some answers or advice on this forum which may be of some help to you.
After having a baby progesterone levels drop - low progesterone or rather estrogen dominence is linked to postpartum thyroid issues and autoimmune disorders your ovaries will eventually make more progestetone but it takes time to get back in balance , have you heard of natural progesterone cream ? Restoring your progesterone levels with natural progesterone cream might really help you and may help with your migraine
So, firstly, you sound as if you could have ongoing thyroid issues, possibly Hashimoto's, which need to be confirmed by TSH, FT4, and FT3 testing, together with thyroid antibody testing, which is TPO and TGab, if that has not been done. Secondly, antibodies do not attack, they are the result of your body being attacked, and each condition will have its own antibodies. For instance, as you have had Covid, you will now have Covid antibodies, increased by your Covid jabs. Now, you mention ANA, and your doctor's reference to lupus. ANA, anti-nuclear antibodies, are tested for when investigating conditions like lupus and Sjogrens, which, as they are raised, could well be relevant to your symptoms. There are further tests that need to be done to confirm these conditions, though, which are usually managed by a rheumatologist, not an endo, as for thyroid issues. A very helpful resource is the HealthUnlocked Lupus site, an extremely welcoming and supportive group. With regard to digestive issues, I assume that you have done either or both an elimination or FODMAP diet, both of which unfortunately are lengthy processes which require a lot of patience. Always remember, too, that we are all different, with varying food sensitivities, and we each have to work out our own. It is important for general health to eat as wide a variety of foods as possible, so always keep a food diary which will help you to pinpoint possible triggers, however unlikely. One thing my partner cannot tolerate, for instance, is lettuce! I can no longer make my curries as he is unable to eat the spices I use, tomato sauces are out of the question, and my casseroles are no longer on the menu due to the onions, which are problematic for both of us, and the carrots for me . Hopefully you will find some answers to your problems soon, particularly those stomach ones, as I know from my partner's experiences the impact they can have on your life.
Light sensitivity can be a symptom of b12 deficiency. Have you had that checked? B12 deficiency can wreak havoc on all areas of the body.
The migraines can be a symptom of that and/or vitamin d deficiency. Number?
What is going on at night has happened to me as well. But for me it is two of my thyroid nodules being large and on each side of my windpipe. I am unsure if your tests have included a scan.
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