I have been going through a complex set of issues for the past few months. It all started with pain in the scrotal area which caused stomach issues, nausea, sleep issues and some weakness, i went through the tests with urologist and was cleared without a diagnosis as whatever was causing the pain had passed as per the doctor it didn't require further checkup, i also had a mild dry cough in preceeding weeks, but i never focused much on it. I felt stable for a few days but then the stomach issues started to get worse, then my sleep started getting affected more and slowly i started developing other symptoms over weeks including mild tumors in hand, ringing in ears, waking up with headaches/pressure in head and sleep issues, dry mouth, mild bradycardia while still having bouts of techycardia on and off, constant burping and belching, occasional shortness of breath, fatigue, muscle pains, weakness and numbness across body, specially in hands and feet, twitching, cold extremities, cold intolerance, dizziness and lack of focus, anxiety, diarrhea and constipation, very visible bulging pulse across temples, neck/carotid area, feet and other parts, jaw pain and more.
To cover all bases, I did a CBC along with CRP, ESR, Vitamin B and D Test and HBA1C and only abnormality was slightly raised levels of WBC and everything else looked clear. I also got a clearance from Gastroentrologist and Cardiologist after necessary tests as well with no signs of celic disease or any direct heart related conditions, i did not think much about thyroid as i had done the TSH and FT3 and FT4 Tests during that time frame with normal results.
The results from few months ago were normal:
TSH 1.1, FT4: 1.4 ng/dl, FT3: 2.6 pg/ml
In recent weeks, the symptoms started to get much worse and started greatly affecting my day to day routine and i developed some neck pain as well, the only thing i could think of was Thyroid issues, thus i went on to get the Results again along with an ultrasound this time to get better clarity:
The Most recent results again came normal as per the lab and showed:
(lab Tsh range is 0.27-4.2, Ft4 0.89 - 1.76, FT3 range 2.3 to 4.2)
From what i can see, there are no significant changes in numbers, is the Anti TPO number of 7 cause of any concern or is it considered normal as i have seen varying numbers based on different labs? My GP some time ago told me that in case of autoimmune diseases such as Hashimotos, the ANTI TPO number goes quite high and they have seen many patients with numbers in hundreds and thousands. Also, are the TSH receptor numbers reasonable enough as well or are they too a cause for concern?
The ultrasound provided some more helpful information:
"Slightly heterogenous thyroid echotexture suggestive of diffuse disease with a iso/mildly hypoechoic oval 7x6x5 mm TR3-4 nodule in the right lobe, and two other tiny nodules/colloid cysts, ultrasound surveillance preferable."
Can anyone share any recommendations based on the information above? Just want some opinions on the situation above as it is a bit complicated.
During the followup with doctor, they refused to proceed with my case as they found the labs to be normal yet again, i will have to wait 3-4 months to retest again, thus looking for feedback.
Can this be some autoimmune disease like Hashimotos or just different cycles of thyroid inflammation due to some virus/infection or some other post viral syndrome affecting the thyroid?
Thank you
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Wanderingweasle
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Well, your Frees are pretty low - especially the FT3. But, your TSH is euthyroid (i.e. no thyroid problem) and that's all doctors tend to look at. They don't even know what T3 is, for the most part! And, they want that TSH over 10, or over-range TSH at least on two consecutive blood tests and/or positive antibodies and/or under-range Frees, before they will consider a diagnosis.
Your antibodies are unequivically negative. And, whilst that doesn't completely rule out Hashi's, auto-immune doesn't look likely. And, the NHS will only test them once, so it doesn't look like they are going to get you a diagnosis, either.
Given your low Frees and 'normal' TSH, it could be a pituitary/hypothalamus problem brewing. What we call Central Hypo. But, as most doctors have never even heard of that, it's not much help.
And, I don't understand the language used in the ultrasound report (and neither do most doctors from my experience) so can't comment on that. Except that nodules are very common in the population as a whole, and usually nothing to worry about.
So, what possibilities are left? Some of your symptoms could be due to low stomach acid (which wouldn't be surprising with that low FT3), low nutrient levels or low cortisol (and if it were a pituitary problem you probably would have low cortisol). You say you had your vit B12 and vit D tested, what were the results (and ranges)? How about folate and ferritin, have you had them tested? If not, it would be a good idea to get them tested, plus your 8 am cortisol.
Thank you, I will look into it. I was actually on PPIs for stomach issues for a few weeks and also some antacids for a month or two, they may have contributed to the stomach acid issue as mentioned in the link above. I will discuss it with the doctor during my next visit. I will get the remaining tests done as well within the next few weeks. I just got the B complex and magnesium to add to my supplements, hoping to see some benefits from those in next few months.
Doubt if your doctor will know anything about low stomach acid. They tend not to believe it's a 'thing'. They always think that stomach problems are due to excess acid, hence the PPIs and antacids. They certainly never bother to check.
Agreed, this vicious cycle keeps on going, I'm afraid I'll be left undiagnosed for long, so will have to dig deeper and go through comprehensive testing myself just to understand what may be causing the issues as the doctors seem uninterested despite my clearly visible symptoms.
Hi, I had iron tested with 160.00 µg/dL result and a range of 65 - 175.
TOTAL CHOLESTEROL was 204.00 mg/dL
Desirable < 200 mg/dl, Borderline high 200 -
239 mg/dl, High >/=240 mg/dl
HDL CHOLESTEROL - 64.60 mg/dL (40-60)
LDL CHOLESTEROL - 124
Optimal: <100
Near optimal: 100-129
Borderline high:130-159
High: 160-189
Very high:=189
testosterone and ferritin tests were not done.
I am not a vegetarian or Vegan. I have had stomach issues for months on and off with constant burping and belching along with constipation and occasionally blood in stool likely due to being contispated.
Nothing suggested, they looked at the labs and said they are normal. Nothing else recommend, they said I can retest after 3-4 months, for now thyroid is normal.
"Slightly heterogenous thyroid echotexture suggestive of diffuse disease with a iso/mildly hypoechoic oval 7x6x5 mm TR3-4 nodule in the right lobe, and two other tiny nodules/colloid cysts, ultrasound surveillance preferable" along with your symptoms, I would definitely retest in 3 months or earlier if your symptoms get worse. Something is going on that they are not seeing. The problem is, doctors go by the book where millions of patients are lumped in together. They look at the range and not the symptoms.
The endocrinologist said that nodules are extremely common and at those sizes usually benign and inflammation in thyroid is common from his observation of patients. I tried to push on it, but got nothing out of it and was told its all normal.
I can tell you from my own experience that I always had normal thyroid test and never had antibodies but I had a nodule for a few years and was told it’s benign even though I had issues with swallowing and eventually random panic attacks and finishing up with eye popping episode …. Eventually I was given a FNB on the nodules and I ended up having pap cancer that was 7 years ago had (thyroidectomy) but for the past 2 years I have been dealing with recurrence of thyroid cancer that has spread to both sides of my neck and still I have normal labs and no antibodies/Thyroglobulin …. Maybe you should have FNB to be sure it actually is benign.
Some people’s health issues just don’t follow the normal protocols.
Thank you. I have been advised to do an ultrasound scan of the nodules again in 3 months, as the size is quite small right now, they didn't recommend anything to me at this point in time and were against any further procedures. I will have to wait it out most likely.
My sister had H pylori confirmed my gastroscopy. She had nausea and other stomach issues - started off mild and got steadily worse until she could barely hold anything down. Might be worth exploring 🤔
Thank you. I had an h pylori test done just a few days ago and results were fine, I was thinking either h pylori or celiac issues as some symptoms were quite similar.
Hi, I’d look for the chinese acupuncture clinic/practitioner to get second opinion. Seems like something has knocked you out of balance and they are good in establishing that 🌺
oh and I took betaine with pepsin tablets at main meals, no fizzy drinks with dinner and stop eating after 7pm and stop my cocoa habit, tried apple cider vinegar at breakfast time in a little water, and it’s gone I only use the tablets occasionally now.
I have heard good things about apple cider vinegar, I'll be trying it shortly to see if it's useful for my case. And I agree, small lifestyle changes can also bring a big change while on the path to gut recovery.
sorry you have been suffering, have you looked at gallbladder issues, just thought your symptoms were relating to gallbladder And bile release. Just a hunch, hope you get to the bottom of it.
sorry, I didn’t mean anything serious as such, I just meant as in ‘playing up a bit’ so nothing that would show up on a test, but not functioning as well as it could, thyroid issues can affect the gallbladder in this way.
Yes, it's quite possible. I will be taking it slow and focus on improving thyroid health over next 3 months to see how it goes. Then after 3 months, I can opt for the retest option to see if labs are showing anything new.
Apologies for bumping the old thread. I have some new updates and would appreciate further feedback.
I retook my tests and thr new results are here:
Tsh 0.5 (0.5-4.2 lab range)
Ft3 3.0 pg/ml (2.0-4.4 normal)
Ft4 1.37 ng/dl (0.8-2.7 normal)
Tsh receptor AB 1.51 IU/L Positive (less than 1 negative, 1 to 1.5 equivocal, 1.5 and above positive)
Anti tpo 0.3 iu/ml (negative under 5.6)
Vitamin D has gone down aggressively from 50 Ng/ml to 23 Ng/ml (with healthy range of 30-100)
Vitamin B12 is normal.
In addition to above symptoms, I have developed more tremors, continuous muscle twitching across the body, hypereflexes, intense muscle weakness and muscle damage, mild nerve damage (diagnosed by Emg) and some throat issues with excess mucus, saliva, dry mouth and swelling in thyroid. Some of the symptoms such as cold intolerance have improved slightly.
I am still awaiting the thyroid ultrasound to understand the extent of inflammation/damage to thyroid gland and also awaiting for followups.
Am I now in a position to finally get diagnosed with hyperthyroid and start treatment or will I have to wait for another few months and wait for things to deteriorate further? Would it still be considered subacute thyroiditis or is it more like subclinical hyperthyroidism range now?
Not a good idea to add to an old thread because not many people are going to see it, always best to start a new thread with a link to the old one.
However, I don't think you're going to get any sort of a diagnosis with those numbers. They certainly show no sign of hyperthyroidism at the moment, despite the TRAB. Your TSH would still be classed as 'normal', and your Frees are well in-range, although your FT4 is on the low-side. Which, to me - as I said before - would suggest a pituitary problem rather than a thyroid problem.
But, there are still two antibodies that haven't been tested, which could shed some light on things:
TSI - which is for Graves', given your positive TRAB
TgAb - which could indicate Hashi's or Graves' depending on how high it is. If it is high.
Apart from that, the only thing I can suggest is an investigation of the pituitary which involves testing cortisol (adrenal hormone) plus other pituitary hormones, like HGH and ATCH. But, you might have a hard time finding an endo to do those. You'd probably have to go private.
Thank you. Yes indeed, I had a hard time getting the pituitary investigation as they keep telling me to wait it through for a few more months every time. They weren't even planning on doing ft3 and antibody tests this time and I had to push a bit for it. I have been able to deal with most of the symptoms but the nerve damage and muscle loss and muscle weakness have been really interfering with daily life. Will be very difficult for me to deal with the issues and continue my work full time if they again insist on waiting for a few months, that's adding a lot of additional stress on me and my family. The endo brushed me off last time saying that everyone can have inflammation in thyroid ultrasound and suggested me to wait 3-4 months for retests.
I guess everyone has a different feel good/tolerance threshold for their labs. For me, tsh levels between 1.2 and 1.5 seem the best along with higher ft4 and anything else feels a bit off.
I had a hard time getting the pituitary investigation
So, you've had a pituitary investigation? What were the results?
Vitamin B12 is normal.
What does that mean, exactly? If a doctor says 'normal', he just means somewhere within the range - any old where will do. But, the ranges are so wide that they cannot be 'normal' all the way through. So best to always give exact numbers rather than repeating your doctors opinion. If it was below 550 then low B12 could be responsible for your nerve damage.
For me, tsh levels between 1.2 and 1.5 seem the best along with higher ft4 and anything else feels a bit off.
Yes, but the TSH doesn't make you feel anything. It doesn't cause symptoms and really should not be any sort of guide. The TSH, when everything is working perfectly, follows the thyroid hormone levels. It's a message sent from the pituitary to make more or less thyroid hormone. But, for you, something is definitely off, so the TSH should be ignored.
T4 is basically a storage hormone that doesn't do much until it is converted into T3. The thyroid itself does make a certain percentage of your daily T3 needs. But, doing a blood test won't tell you how much come from the thyroid and how much from conversion.
However, it is mainly T3 that causes symptoms when it is too high or too low. So basing how you feel on your FT4 level is also a red herring. But it is true that we all have our individual T3 needs. But, as we're never tested when we're healthy, we cannot know what those needs are.
Ft4 only 30.00% through range
Ft3 41.67% through range
If doctors knew anything about thyroid, this should be their first warning light. Euthyroid levels of thyroid hormones should be about 50 % through the range. Both of yours are well below that. BUT the FT4 should be slightly higher percentage-wise than the FT3. However, when the thyroid is failing, for whatever reason - and that could be due to lack of stimulation (i.e. low TSH) - the thyroid will produce less T4 and more T3, so the ration will be off. But, I would be very, very surprised to find a doctor who has the slightest inkling about any of that! The reaction I'm used to is 'T3? What's that?' It's an up-hill battle!
Thanks, as mentioned in the other comment, the Vitamin B12 was 600.00 pg/ml with ranges of 187-883 as normal in this lab.
I will be opting for a private pituitary investigation, I could not get it done with current tests. Will update surely once those results are out.
I will be looking to change to a different endo as current one keeps telling me to wait 3 months for retesting almost every time without taking my symptoms into account.
Oh, they never do take symptoms into account - don't even know what they are for the most part. But it does sound like you need a change of endo. Do chose wisely, though. Most of them are diabetes specialist with scant knowledge of thyroid.
Test was done early morning. Not fasting as they told me that it wouldn't be necessary.
Vitamin B12 was 600.00 pg/ml with ranges of 187-883 as normal in this lab.
Folate and ferritin weren't tested. I'll have to most likely get them privately tested in a few weeks.
For Vit D, I was taking 10,000IU as per the doctor's recommendation for a few months to cover deficiency 5 times a week. Afterwards I moved to maintenance dose of 2000IU. Earlier testing showed 50 Ng/ml with healthy range of 30-100, thus I was moved to maintenance dose. But, it has gone down again as per latest result.
Not fasting as they told me that it wouldn't be necessary.
Of course they did! lol Either they're so ignorant they don't know that it can lower TSH, or they do know and they want to avoid you having a high TSH, because then they might have to diagnose you with hypo! And that's the last thing they want. Don't listen to them. Do as suggested on here. We, at least, know what we're talking about.
Retest in 6-8 weeks as a fasting test, only drink water between waking and test …..test just before 9am , test TPO and TG antibodies, vitamin D, folate and ferritin
Thank you. I will repeat and also up my vit D intake again.
My main concern is that in case of further delays with some kind of diagnosis and treatment , I'll end up losing my ability to work full time which will add a huge stress on me and my family. Also I'm not in a position to take time off from work for some period while waiting for betterment. The muscle weakness and loss, tremors and twitching, weight loss, bp and heart rate issues, heat intolerance (I work in a hot environment), fatigue, lack of focus and more is making work quite difficult. I am forcing myself through it right now, but it is taking a toll on me.
I hear you , I felt very similar about having to give up work and was lucky our Personnel department had just started a well-being policy I could use while I got myself right. When they had all the facts and my plan for recovery they were super supportive and gave me some non teaching time to spread my workload.
Take it one day at a time, be kind to yourself and eat well, be restful when possible, follow the advice here, it has literally saved me. Keep working on this GPs and specialists to get answers.
Thank you for the support. I really hope I'll be able to start recovery process very soon and the endo will actually listen to my concerns and look at the symptoms. I was passed on earlier to neurologist, cardiologist and other doctors but all ended up sending me back to endo as they believe that thyroid disturbance can mimic a wide variety of diseases and any symptoms that I may bring up may be traceable to thyroid related issues as there is such a wide spectrum of symptoms. Me and my family are going through a lot and are hoping that it's not some other issues and is hopefully just thyroid disturbance and any other issues. I'm trying to get through work somehow but some days end up getting bedridden due to flares, my nerves have been damaged and Muscles are very weak as well, not really sustainable for me in the long term so hoping that recovery process can start soon.
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