Hello All. I have a large and growing goitre but normal thyroid levels. The goitre has been there for about 25 years, but in the last year or so it has started growing on one side. Thyroid hormones still reading as normal. The other thing I’ve noticed in the last year is I’ve started ‘wandering’ sideways when I walk, so I walk into things, and have fallen several times going up stairs. The most recent time landed me in A&E to get stitches in my face. I was so embarrassed about being clumsy I didn’t mention the falls to anyone, but my husband was with me this time and couldn’t understand what had happened so I had to come clean.
Coincidentally, I was chatting to a friend with Hashimotos and remembered that in the years before her diagnosis she had several nasty falls - we used to laugh about her clumsiness, but now I’m wondering if there is a connection.
I have a follow up appointment with the endocrinologist at the hospital in a few months and I wondered if this is something I can present to him as further evidence that the goitre is not just an inconvenience, and that there is something wrong, despite the normal blood tests.
Any thoughts?
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The other thing I’ve noticed in the last year is I’ve started ‘wandering’ sideways when I walk, so I walk into things, and have fallen several times going up stairs.
Check your levels of vitamin B12 and folate.
There are quite a lot of possible causes of ataxia (staggering and lack of coordination) apart from low B12 and/or folate.
For example, if you are gluten-intolerant or coeliac it damages the cerebellum in some way, and that can cause "gluten ataxia".
Thank you for that info. My last blood tests didn’t look at B12 / folate that I can see, although I’ll do a deeper dive. But you saying that reminded me of another thing my bloods threw up - I have high ferritin levels that have been slowly creeping up over the past few years. GP can’t seem to work out why, endocrinologist says it’s not related to thyroid.
Low vitamin b12 can cause inflammation as it gets used up counteracting it. The ferritin does increase with inflammation so this could be an indicator that b12 levels are on the low side.. A bit of a vicious circle
What do you mean by 'normal thyroid levels'? What exactly has been tested, and what were the results and ranges? Or, did your doctor just tell you they were 'normal'? If so, they possibly aren't, because doctors often don't understand blood test results, and when they say 'normal', all they mean is 'somewhere within the range'. However, the ranges are too wide. Take, for example, the TSH. The ranges is usually something like 0.25 - 4.5. If your results was 4.4, with that range, your doctor would tell you that 'it's normal'. But, technically, you are hypothyroid when your TSH reaches 3. So, we should always get a print-out of our results, so that we know exactly what is going on.
Most importantly, did your doctor test antibodies? Probably not. But, if you have a goitre, that should be the first thing s/he tests.
greygoose may miss your reply as you replied to your tread in general. If you use the reply at end of their post and they get notified of your reply.
(I’ve mentioned now, so should get flagged)
That FT4 is an extremely low result, but acceptable to drs as they only look at abnormal levels & ignore anything in range, I wonder what your FT3 is like? A small amount of FT3 is produced by thyroid but most is converted from T4.
The FT3 is the more active hormone needed by the body. Unfortunately no one can predict if it is equally low (to FT4) or disproportionately high or even under range which would given you very hypothyroid symptoms.
If TSH, FT4 & FT3 are low it’s a sign there’s an issue with the pituitary which produces TSH and signal the thyroid to produce.
I thought the T4 was on the low end. I don’t know my FT3 level - would it be worth asking my GP for that test? I have no underlying endocrine issue that I’m aware of.
GP likely refuse FT3 because your TSH and FT4 are in range. When a GP orders a thyroid function test (TFT) It’s the lab that chooses what to test. Some are automatically set up to test TSH the only FT4 IF TSH abnormal & FT3 IF FT4 abnormal.
So your GP may not even be authorised to request a FT3.
They also have restrictions on vitamin D testing & just suggest everyone takes a low dose supplement- which wouldn’t be adequate if deficient.
What did dr say about one side of thyroid being larger? Has thyroid been scanned? (Ultrasound?)
I’d seen two doctors - who both said my neck “look fine”. During the third appointment - (with a nurse). I simply said - look at my lower neck when I drink. I Inclined head up drank a gulp of water, your thyroid moves up and down - so any nodules or swelling become quite evident when swallowing. It’s not obvious at rest. Nurse arranged bloods & scan straight away.
Was endocrinologist referral to look at your thyroid results? Normally if results are in range they are not referred to endocrinology & low levels are managed by GP.
You will likely make quicker progress if you arrange a full private test which you can order online. A kit is sent via post & sample taken by finger prick & posted back. Results are often available very quickly online.
For example Medichecks - advance thyroid package tests TSH, FT4, FT4, TPO, TG, folate, ferritin, B12 & vitamin D & C-Reactive Protein (inflammation marker)
There’s quite a few companies offering different combinations, this page list them & discount codes.
I was referred to the endo because my goitre is large enough be seen at all times, even at rest and has started to cause difficulty swallowing and is impacting my vocal chords and sometimes breathing. I’ve had two ultrasound scans on it and a needle biopsy on some nodules. The enlarged side is a cyst. The only option the endo offered for the goitre was surgery, which I’m not ready for.
Endocrinology look at blood tests & treat hormones - ENT (ear nose & throat) usually look at physical issues - usually with viewpoint of “is this surgical?”
ENT will discharge you - or pass you back to GP to refer you to different department if necessary- if not surgical.
Recommend you obtain a copy of the ultrasound reports. There are often technical details about health of thyroid which doctors don’t fully pass on.
I have heard lots of examples on this forum of the feeling of thyroid swelling reducing once adequately medicated. So there is a potential that you if do have low levels. Once on the right level of replacement is found the swelling, including the nodules & cysts reduce. This is likely to be slight, but your goitre sounds severe.
Once you test fully you can find out if they are low & why is TSH is low with low levels.
Hypothyroid is treated the same way so it will take time to increase levels, before knowing if it reduces goitre & by how much.
If the thyroid is impacting on breathing, voice & swallowing surgery becomes necessary regardless of thyroid function.
I was referred to ENT and seen by a consultant endocrine surgeon. Which is maybe why he went straight for the surgical option. I’d assumed he’d have some expertise in thyroid function, was I wrong?
If ENT referred you to a surgeon - possibly no, he doesn’t account for the thyroid levels. The surgeon specialises in operating on endocrine abnormally. He relies on the investigating team to confirm its surgical & If previous doctors eg GP says levels are normal….
To be fair he looked at my previous bloods, ordered more bloods (which I never saw the results of) and an ultrasound in clinic. So he wasn’t totally relying on previous consults narrowing it down to surgery. He investigated whether the goitre could be caused by thyroid dysfunction. The question I suppose is if he looked closely enough or with a well-enough trained eye.
He’s discounted it as its within range. Not very expert I’m afraid. He is prepared to operate - I’d be confident he’s a excellent surgeon, most surgeons are brilliant at operating.
I had zero interest in a thyroidectomy as well. I too was content to monitor my goitre and do regular biopsies.
But last summer I came very close to drowning due to the impact of breathing issues, head/neck position and the sustained impact on my body of lower oxygen.
I did not even hesitate to jump off my sister's boat, did it with joy & complete abandon. As I am a strong swimmer and zero fear or issues with water. This all happened in minutes.
Also, my thyroidectomy was due to placement and size issues only ie.breathing & swallowing- "normal" labs/"thyroid is fine".
But my thyroid out of my body was described as diseased. Twice the size, twice the weight & greyish purple. So isn't that interesting?!?!
I could immediately feel it gone. And was shocked with all the positive physical changes (medication is not one of the positives, finding that very hard).
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Big decision I know, all the best with everything - either way.
I don't think you need surgery on a goitre. My TSH was above 6 for 20 years and my FT4 on the low borderline of normal and I could not get treated. It got bigger over the last year, along with a further increase in TSH.
However, as soon as I started on thyroxine, even at just 50 mg, it went down.
Well, yes, they are "within the normal range', but so what! That doesn't make the good, as I explained above. Your FT4 is much too low. A truly 'normal' (euthyroid) FT4 would be around 50% through the range. Yours is only 12.75% through the range. That is too low.
Your antibodies are also within the range, but that doesn't mean you don't have autoimmune thyroiditis because antibodies fluctuate all the time, and it's even possible to have AIT without over-range antibodies. So, on the basis of just one blood test, it's not possible to draw any conclusions.
For a start you need your FT3 tested - although, to be honest, that probably wouldn't mean much to your doctors, they wouldn't understand the results, because they obviously have very little understanding of thyroid. However, it does need to be done. And, antibodies should be retested at least twice at about three monthly intervals. And iodine needs to be tested. Iodine deficiency can cause goitres. BUT, don't start supplementing with it, just in case, because that could make things a whole lot worse!
You should also have nutrients tested: vit D, vit B12, folate and ferritin to start with. Are you taking any sort of supplement at the moment?
I’m not taking any supplements - I find they all upset my stomach. I know my ferritin levels as they are currently too high. Last count was 419ug/L (normal below 150).
I have a feeling my GP might not be receptive to me asking for the FT3 and nutrient tests because I saw the endocrinologist in April. He gave the results a cursory look and declared them normal then. But I will try!
You're probably right - especially where the FT3 is concerned. But, have you never thought about getting them done privately?
Endos rarely know much about thyroid because they all tend to be diabetes specialist. The problem is, GPs think the endos are the experts! Which is laughable when you know anything about thyroid.
Interesting... I keep losing my balance & hitting the wall. I don't have a goitre but my last bloods showed my levothyroxine is way too low. I am very very tired too. Hope you get sorted soon.. its horrid isn't it?!! Polyanna
Strongly recommend getting full thyroid and vitamin testing done yourself
Ft4 is far too low, likely Ft3 is too
Low FT3 leads to poor nutrient absorption and low vitamin levels as direct result
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) usually diagnosed by high thyroid antibodies
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
With large goitre you should have ultrasound scan anyway
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 hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Are you in the U.K.?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
This clumsiness. & not walking in a straight line has a name, it is the lack of proprioception and it is a very common symptom of b12 deficiency/Pernicious Anemia. The inability to realize the space around you. For years a friend would yell "Why is it you can't keep walking on one side?" I had no clue what she was even talking about - it is a major sign.
Have you had any moments of foot drop? Because foot drops, falls & gait changes are all symptoms of the deficiency.
It needs to come out. You've had it far too long and it's doing you know favours. I became very ill with raised ferritin in 2018/2021. That is a cause for concern. Are they referring you for liver tests and additional blood tests. Look up the symptoms of high ferritin. I was also not walking straight, I had severe IBS and bone pain. Have they scanned this beast to see where it is in relation to neck and chest structures? You might just be seeing the top of it as the rest might be retrosternal. When I became ill, raised ferritin was only one alert. They did a full range of blood tests and I had low platelets as well. In addition I had high calcium, low vitD, low phosphorous and raised parathyroid hormone (PTH) leading to an additional diagnosis of Hyperparathyroidism. If you've not heard of the parathyroids, they are four glands, normally the size of a grain of rice, that sit behind thyroid and control the level of calcium in the blood. They work like the thyroid with a pendulum swing in relation to levels of vitamin D and phosphorous. The parathyroid hormone PTH regulates the amount of calcium in the blood. If a parathyroid gland produces too much calcium and doesn't 'switch off' when it's not needed, the gland grows as a benign adenoma. Sometimes, they can grow inside the thyroid. If you have too much calcium in the blood it circulates throughout the body damaging your organs, your brain and nervous system, kidneys, liver and heart as well as leaching calcium from your bones causing osteoporosis and arthritis. I'm really surprised that you are not hanging your fist on the table demanding that its removed. Whatever, it is being caused by, it's doing you no favours.
By the way, I also have Hashimoto's and fibromyalgia. As my goitre is mainly retrosternal, I'm having it removed and it is pressing in my windpipe, it is near my aorta and affecting my voice. It is about the size of an orange on the CT scan. The surgeon reckons that I had hyperparathyroidism for a ten years before I was diagnosed with Hashimoto's in 2002. Levothyroxine failed to bring my thyroid levels under control. They were treating the wrong disease.
UPDATE: Thank you to everyone who has been kind enough to reply to my post. I plan to get private blood tests and further investigations if necessary in the autumn (up-coming life events permitting.) In the meantime, I started taking a daily B12 supplements two months ago as a stop gap, knowing I wouldn’t be able to the tests immediately and being very concerned about the possibility of another fall. The outcome is that my goitre has reduced in size dramatically! I assume I’ll need to come off the supplement before I get blood tests, but wow, the difference is amazing. My breathing and swallowing are both significantly easier. It’s hard to measure whether my clumsiness has got better, but I have noticed that I am not tending to ‘drift’ or stagger as much as before - I really notice now when I do because it’s a much less common occurrence.
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