After suffering from breathlessness for a few months, I underwent various tests in April 2021 to try and find the cause. During a lung CT to see if I had any blood clots, I was advised that my thyroid was very large, not in the right location, and multi-nodular and could be the cause of the breathing issue as it was pressing on my trachea. After seeing a Head & Neck consultant and having biopsies taken, the diagnosis I was given was that I had a multinodular goitre with intra-thoracic extension - nodular hyperplasia causing pressure symptoms - indeterminant Thy3a nodule. I was advised that a total thyroidectomy was the best course of action which I had in September 2021. Following the surgery, I was advised there was a 30% chance of malignancy and that samples had been sent for evaluation. Luckily they came back as benign.
The problem I have now is that I'm still feeling as breathless as I was before the surgery and am wondering if this is something others have experienced? My GP has listened to my chest, and said my oxygen levels are fine, and also sent me for a chest x-ray which also came back clear. Previous to gaining the goitre diagnosis I also had some tests relating to breathing and my heart e.g. an ECG and echo-cardiogram which were also fine. So I'm at a loss as to what is causing the breathlessness?
Prior to having my thyroid removed, my thyroid function tests had always been within the normal range but since the surgery I now have the following:
After the surgery, I was prescribed 150mg of Levothyroxine, but after the result of the last blood test this was increased to 175mg for three days of the week. I'm due to have another thyroid function test and bone profile check (as my calcium levels were also out of the range) at the end of the week at the hospital where I had my surgery.
My GP is of the opinion that it takes at least three months for 'thyroid' levels to adjust and so the medication shouldn't be changed until then, but I'm feeling a bit less tired since the increase in the dose (which he agreed to begrudgingly following a letter from my surgeon) so I'm a bit sceptical of the care I will receive once fully discharged back to my GP's care.
I feel like I've gone from having a well functioning thyroid to now not having a thyroid and still feeling breathless. It is also quite lumpy where I've had the surgery - which I'm now massaging to see if that helps. Any advice would be welcomed.
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FeelingBluey
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Oh hun, you’ve been through a lot. And it’s all so fresh. I know it must been worrying but stick with the Levo for now. Your FT3 is so very low, below range. Without your Thyroid you’ll likely need to add T3 into your treatment plan but that’s not an easy route to go down as NHS don’t offer it easily. Keep getting full thyroid tests - FT4/3, so you can check how your are converting that Levo.
Prior to having my thyroid removed, my thyroid function tests had always been within the normal range
Breathlessness can be a hypo symptom. And, having results within the normal range does not rule out hypothyroidism. The ranges are too wide, so it's where the result falls within the range that counts. For example, the TSH range goes up to 4.2 in the range you've given above, but you are actually hypo when the TSH reaches 3.
Your present results show that you are now very hypo, and a very poor converter of T4 to T3. Poor conversion can happen for many reasons, but one of them is sub-optimal nutrient levels. So, have you had your vit D, vit B12, folate and ferritin tested? Low iron can also cause breathlessness.
I feel like I've gone from having a well functioning thyroid to now not having a thyroid and still feeling breathless.
Well, that remains to be seen. And I suggest you post some of your pre-op thyroid test levels and ranges, so that we can have a look. But, having a goitre with large nodules would suggest that your thyroid wasn't all that well-functioning. And, if it was pressing on your trachea, there wasn't much else you could do but remove it - no point in having a well-functioning thyroid if you've suffocated to death.
What needs to happen now is that you need to see another endo to try and get some T3 prescribed. Doubtful your GP would understand the need, and he can't prescribe it, anyway. It has to be an endo to begin with. And your GP doesn't sound particularly clued up. You just have to impress on him that keeping your FT3 under-range is just asking for trouble, and if you can't produce it naturally then you really do need to take it. Meanwhile, I would be on the look-out for a more clued-up GP, if I were you.
Thanks for your informative reply - there is a lot to take in. I've been on medication for low B12 for a couple of years now. The last blood tests I had in Sept. 21 after my surgery included one for Hydroxy Vitamin D Level which was 100 nmol/L. It was indicated that >50 nmol/L = Vitamin D sufficiency. Looking back at my records I have the following information re. previous thyroid function tests:
SERUM TSH LEVEL:
22.1.21 = 1.6 m/u/L [normal range = 0.4 - 5.0mU/L]
24.12.18 = 0.4 mU/L [normal range = 0.4 - 5.0mU/L]
2.7.18 = 0.83 mU/L [normal range = 0.3 - 4.8mU/L]
I have readings going back to 2004 all in the 0. range
SERUM FREE T4 LEVEL:
22.1.21= 12 pmol/L [normal range 9-19 pmol/L]
24.12.18 = 13 pmol/L [normal range 9-19 pmol/L]
The last serum ferritin test I had was in 2018 = 78 ug/L [normal range 5-204 ug/L] and serum folate also in 2018 = 6.4 ug/L [normal range 4.8-19 ug/L]
The morning after the surgery the surgeon said that my goitre/thyroid wasn't as large as they thought, a comment which surprised me considering all the imaging that was undertaken prior to the surgery, but that due to the potential of malignancy he said it was better to remove it.
Unfortunately my GP seems to have little empathy in regard to ailments that end up changing your life as you know it and just puts it down to the inevitability of the ageing process (I'm 62) which isn't satisfactory at all, but sadly its not that easy to change GPs where I live.
Well, I think it's time you had another ferritin test at least. A lot could have changed since 2018, especially now that you're hypothyroid.
Hypos usually have low stomach acid, which makes it difficult to digest and absorb nutrients.
There's a lot of variation in your TSH results from before the op. Do you remember if all the blood draws were done at the same time of day? If they were done at different times, you can't compare them, so the results don't mean very much. Although none of them were overtly hypo, although your FT4 wasn't very high. Did you ever have antibodies tested?
What is this medication you're taking for low B12?
Thanks. My blood tests were probably at different times of the day. I don't think I've had my antibodies tested. I'm taking 50 mg of Cyanocobalamin tablets a day which my previous GP had prescribed at 2 a day but my current GP reduced to 1 per day.
Typical GP! Wrong type of B12, and not enough to make the slightest bit of difference! Plus, just taking B12 by itself is not going to help either. The Bs all work together, so to get the best from your B12 supplements, you need to take all the others, too.
So, what I would suggest is 1000 mcg daily sublingual methylcobalamin PLUS a good B complex, such as Thorne Basic B. It has all the right forms of the B vits, in decent quantities.
Doctors do not understand the importance of always getting thyroid labs done at the same time of day. So, in future, I would suggest you always get a blood draw before 9 am, after fasting over-night, and leaving a 24 hour gap between your last dose of levo and the blood draw. That way you can compare them and see what's really going on.
So I'm at a loss as to what is causing the breathlessness?
Some common causes of breathlessness are low levels of nutrients. Doctors get little or no training on the subject of nutrition, so they rarely test levels of iron, ferritin (iron stores), vitamin B12, folate, vitamin D. These low levels can cause all sorts of common symptoms, many of which may overlap with thyroid diseases.
Surgery and anaesthesia may have caused substantial loss of blood which exacerbates breathlessness, and reduces iron, ferritin, and B12.
Often a doctor may just test a Full Blood Count (FBC) rather than test individual nutrients. An FBC may be able to show you if you are anaemic, and may give hints about some nutritional deficiencies. But people can be iron deficient or B12 deficient without being anaemic. And nutrient deficiencies need treating even without anaemia.
Do you always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements within 2 hours
Some like magnesium, vitamin D, calcium, HRT or PPI must be at least 4 hours away
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3
tested.
Very important to test vitamin D, folate, ferritin and B12
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 and last dose levothyroxine 24 hours before test
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
Thanks. I have been taking the Levothyroxine first thing in the morning and not eating and drinking for at least an hour. The problem I have is that I also need to take my PPI an hour before eating as I get very bad acid reflux and so I can't wait another 4 hours to take that so have been taking it just prior to eating instead, but have been suffering from acid reflux more than I was prior to the surgery.
Always get same brand levothyroxine at each prescription
Retest thyroid levels in 6-8 weeks
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thanks for the further info. and links. I've always assumed that I had high stomach acid as I have acid reflux but maybe I need to try the example of how to test the level of stomach acid in one of the links. I've been taking a PPI for over 30 years and was taking 40mg twice a day until I moved to my current GP and he reduced it to once a day. All was fine on that dose until my thyroid removal and now I'm experiencing a lot of acid reflux. When I've questioned the rationale for the PPI especially in relation to the bone issues it can cause, my previous GP said it was better to take it than run the risk of cancer caused by the constant acid reflux and when examined with a camera down through my nose into my throat following a nasal procedure I was told that my throat was very burnt. I am now coughing a lot especially at night which I believe is another symptom of acid reflux.
Well you may have to continue on PPI ….but for levothyroxine to work well we MUST have GOOD vitamin levels
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Active B12 at least over 70
Folate and ferritin at least half way through range
Retest annually as minimum, ideally twice year
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results (most vitamin B complex)
As you supplement B12, recommended to also take a good quality vitamin B complex daily, one with folate in
Do you always get same brand levothyroxine at each prescription …..
If yes…..which brand
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after. No vitamin supplements or medication within 2 hours
No magnesium, vitamin D, calcium, HRT, PPI , or iron within 4 hours of levothyroxine
Approx how much do you weigh in kilo
Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day ……
if needing significantly more than that ….looking at malabsorption issues….especially lactose intolerance….
It's very early days for you, but I don't think you should be waiting 3 months between follow up blood tests and dose adjustments.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 - Levothyroxine is a prohormone and needs to be converted by your body into T3 the active hormone that runs the body and is said to be around 4 times more powerful than T4 with the average person needing to find and utilise around 50 T3 daily, just to function.
Your conversion can be compromised by low vitamins and minerals, especially ferritin, folate, B12 and vitamin D - and these maybe in the NHS ranges, but some ranges are too wide to be sensible, and living without a thyroid requires optimal levels, and likely self supplementing these core strength vitamins and minerals.
Conversion of T4 into T3 can also be compromised by any physiological stress ( emotional or physical ) inflammation, dieting, depression and ageing, so seeing what you have recently been through will have compounded your conversion and you need a little time for your whole body to readjust.
The thyroid is a major gland and the engine/gear box of your body, controlling your physical, mental, psychological, emotional and spiritual well being, your inner central heating system and your metabolism.
Some people can get by on T4 only, some people find that at some point in time T4 seems to be not as effective as it once was, and a little T3 maybe added to the prescription, some people can't tolerate T4 and take T3 only, and some people take Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and some people take a " mix ' of synthetic and NDT preparations.
Currently in primary care your doctor can only prescribed T4 - Levothyroxine medication.
Once discharged from hospital endocrinology your yearly thyroid function test in primary care, is generally only a TSH blood test which is not appropriate and where many of us find our health problems start.
20 odd years ago your doctor was able to prescribe all the thyroid hormone replacement options, but in 2021 you need a referral to endocrinology for these options.
I would imagine you are still under the hospital so your situation is still being monitored through endocrinology liaising with your doctor and you are being monitored and dosed on your T3 and T4 levels which is essential.
There is a lot to take in and understand and when unwell, everything becomes a mountain.
Rest up and be kind to yourself and start reading other peoples posts and the answers they receive.
There are many forum members on here, who have been through similar and you will be supported with any questions you may have and joining Thyroid UK the charity who support this forum is an excellent first step as their website is full of useful information.
It's a bit like a jigsaw puzzle but once you get a couple of corners out, it will take shape and you will recover from the surgery and once with optimal vitamins and minerals your thyroid hormone replacement will work better and the build to better health starts.
I'm with Graves post RAI thyroid ablation in 2005 and now manager lingering Graves, thyroid eye disease and hypothyroidism.
Having been refused any treatment options other than T4 - Levothyroxine - I now self mediate and take full spectrum thyroid hormones, NDT, and am much improved and organise my own blood tests through a private company as listed on the Thyroid UK website.
Hi there. I am sorry for your current health issues. I had my thyroidectomy in April 2021 for very very similar reasons to you. Many nodules, swelling, stopping me from swallowing food and affecting my voice. I was (overall) pretty sick before the op, I just didn't realise how sick until they took it out.
A few things that I noted, which may or may not be helpful.
It really does take at least 6 weeks for your medication to kick in and longer for the throat to heal. Mine felt lumpy for a while and was still a little swollen for at least 3 months, but is smooth now. It really has taken about 6 months for everything to settle which the doctor told me; he was right.
Re Levo doses, I was on 100 a day at the start but after dropping to a hypo episode (felt so so awful), I increased and have settled at 175 a day. Doc said 150 would be preferable after my last tests, but that was just a slightly high T4 reading with in-range T3 ... so I went back to 175 after 3 weeks of trying 150 and feeling shit (no script needed here, we are a bit lucky). I have not needed any T3.
Interestingly, and this may help you, my experience was that my heart rate went up quite a bit after I started the Levo . My average heart rate was down at 61 before my operation (I wear a fitbit) then went up to an average of 75 for a while, but it has dropped back to high 60s now, which is good for my age. Before it moderated, I had weird (short) heart spikes each week, which was scary and I did feel breathless as they were happening, but they have gone now. I was musing that my body was just so excited to finally get some T4/T3 after 5 years. but maybe I was just walking around in a body that was still trying to normalise.
My life is amazing now, I cannot tell you how good I feel and how happy I am that the #*@# thyroid is gone. I really hope you get the same feeling.
Have you had a peak flow test? This is the test they use in Asthma to see how much breath you are taking. Mine is low and they treat me as if I have Asthma, I am not sure it is but the steroid inhaler certainly helps. It feels like pressure on my diaphragm or stomach. I also get hayfever which I never used to and this time of year it can be hidden fungal spores. How much of this is due to a thyroidectomy or just getting older, who know's. Give your thyroid levels a little time, those levels will make you feel awful. So pleased your biopsies were fine.
Thanks and yes I have had a peak flow test and other lung functioning tests as part of the initial investigation into the breathlessness prior to the goitre being identified. I also had an ECG and an Echo-cardiogram - all tests seemed to be normal 'for my age'. I have previously used an inhaler in the autumn for breathing issues that I only got at that time of the year, whereas it now seems to be all the time, an an inhaler did not help when tried as part of the diagnosis process.
Hi . Just to say as a fellow thyroidless person a few things. Firstly I don't believe we can function adequately on throxine alone . You need T3, T4 or even better the full selection that NDT gives you. Also don't underestimate the low calcium . If like me you had damage ( or even a scratch) to the parathyroid glands in surgery you'll have to watch those levels for life. Which leads me to the last thing of optimising your calcium/vitamin D. Ferretin, folate and really keeping on top of making sure you're in upper ranges will help in getting the most out of the thyroid medication. Good luck in finding your balance, sure you will get there eventually!
Thanks everyone for taking the time to reply - it is very much appreciated and I'm trying to digest all the information and advice so I can ensure I'm feeling the best I can, which I don't think I am currently - it certainly is a steep learning curve.
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