So, yes.. hello! It's a joy to find a platform which offers meaningful advice and connection online, I dont use social media and wish i had discovered this forum sooner - I have been really impressed and moved by how supportive you all can be having read many posts.
Long story short - I am seeking advice on a total thyroidectomy which is the only option of treatment I have been offered for my large goitre. The goitre is really big, takes up most of the front left of my neck and obviously i feel very self conscious but up until recently I have just learnt to live with it (its been growing for over 10 years..) I always hoped to get to the root of the matter and how i might treat the cause/s rather than dramatic and life changing surgery.
I have had my TSH tested regularly over the last few years (btw, this was never even mentioned until about 5 years ago with me prompting it...it was as if the goitre was not linked to thyroid issues even though it IS my thyroid). I realise I need private testing done to get up to date T4/T3, vitamins etc. but currently have no spare cash - I aim to do this soon. TSH from Nov '22 came back as 3 when in previous tests it was around 1.5... my GP said it was nothing of concern as it has also been seen at 2 in the past. These are all within 'range' (I know how hairy this...and have read many posts about the unreliability of TSH testing)
Sorry this post is getting very long - its hard to sum up! I also have Crohns so I guess struggle to assimilate what I need from food and supplements. I have had a couple of Iron infusions in the past and this helped with my tiredness but more recently I don't thin its made much difference. My general symptoms are intermittent fatigue, anxiety, sometimes a feeling of vertigo, sensitivity to light and sound, difficulty regulating body temperature, hair thinning and digestion issues (but I now know this is intestinal damage - Crohns)
The goitre is not going to dissapear on its own and I am aware it may start impacting my breathing, this is worrying of course. So i am now having to wrap my head around possibly going ahead with surgery at some time in the future - does anyone have any advice regarding this? Is it a terrible idea? At the moment at least my throid is functioning (if not optimally?)
If you have managed to read this far, I am very grateful, thank you. Best wishes to you all
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With Crohns your GP should be testing vitamin D, folate, B12 and full iron panel test including ferritin at least annually
Request/insist these are tested now
Thyroid struggles to work unless all four vitamins are at optimal levels
NHS only tests and treats vitamin deficiencies
You are likely to need to self supplement to maintain OPTIMAL levels
Have you had thyroid antibodies tested for autoimmune thyroid disease. If not these need testing too
Again GP should test (NHS won’t test TG antibodies unless TPO antibodies are high……significant minority of autoimmune thyroid patients only have high TG antibodies)
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
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
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.
Recommended on here that all thyroid blood tests early morning, ideally just before 9am 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
List of private testing options and money off codes
Many thanks - this is very helpful and clear. Vitamins and nutrition are rarely (if ever) mentioned to me except my iron levels which are consistently low, so I will try and push for testing. And if I cant get what I need I am going to save up for private blood tests - I hope it's okay to make a new post and ask for advice again if/when needed. Much appreciated
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Has your thyroid ever been scanned (ultrasound)? The size & health of thyroid of thyroid needs to be determined once affecting breathing, swallowing or voice. It needs to be accessed as becoming a physical issue.
This will be investigated by ENT from a surgical viewpoint. They don’t include investigating function. Low function is dealt with by GP or if difficult of overactive it’s managed by endocrinology.
Low nutrients (caused by poor absorption with Crohns) is often reported by members to lower the TSH. So the TSH should rise to compensate for low thyroid hormones but if the TSH is not responding & Free thyroxine & triiodothyronine (FT4 & FT3) are not being tested then it’s not known where your thyroid levels are.
NHS labs automatically test TSH and if in range not test FT4 so testing privately becomes necessary.
Crohn is autoimmune or almost always classed as autoimmune and having 1 autoimmune condition predisposes you to other autoimmune conditions so testing thyroid antibodies might also be good idea.
Does your doctor test nutrients regularly? Doctors tend to accept anything in range but optimal levels are ideal, usually at least half way through range to reach optimal.
Alway obtain copies of test results & reports. Lots of details gets overlooked or not discussed.
Thank you so much for this informed and detailed response. I am rarely offered vitamin testing and have to prompt for this myself - the focus has been my low iron levels but I will now request the others. I have to admit I feel very disempowered and nervous about asking for things and stating my needs - I feel silly saying this, but have been fobbed off so many times it really affects my confidence (this is nothing new to many of you, I'm sure)
If I cant get what I need tested on the NHS I am going to try and invest in private blood testing and will report back.
The ferritin is great, I had an iron infusion in September so I guess that worked. I'm not sure now whether to supplement to maintain my levels or wait and request another infusion in some months time...
I am new to analysing blood results and identifying defiencies but with ideas from this forum I would like to try and optomise my levels as much as poss. I have made another GP app for January and will really try and push for more detailed thyroid testing as realise without this we are in the dark.
That looks like a good result - possibly a tad higher than desirable but still well within the range, and I'd be happy with that result myself. However, a common problem for people with iron infusions is that their ferritin levels may drop like a stone afterwards. If you had an iron infusion in September it may be a temporary good result for your ferritin. I would suggest that you have an iron panel done every 3 months for 9 - 12 months following the infusion to keep a check on it. This helps for two reasons...
1) You can find out how fast your ferritin and serum iron disappear (if they do), and
2) You can start supplementing to maintain your levels when your levels are close to optimal so that you don't have to go through another infusion.
Another thing to be aware of...
Ferritin is used as a way for the body to store iron in a way that pathogens can't get at it. If you were to catch flu your body/blood stream would be swarming with flu virus. In order to reproduce viruses (and lots of other pathogens e.g. funguses, bacteria, parasites, moulds) need iron. But they can't get at the iron in ferritin, so it is a protective mechanism. Ferritin usually rises when people are ill, and serum iron (which pathogens can get at) is kept at a low level.
You might find this link of use for reference purposes :
Thank you for this! And yes I wondered about the sudden 'crash' in ferritin which can happen following an infusion - I definately have experienced that in the past and want to prevent. I will mention to my GP and hope for regular testing, and supplement as/when needed. Also interesting about ferritin as a marker for inflammation as Crohns is a chronic inflammatory disorder... hmmm. Lots to think about! Much appreciated
Taking enough thyroid hormones to keep your TSH very low will mean that your thyroid has to do little or no work. This helps some people to reduce the size of a goitre. However, yours may have gone on too long for this to help now.
You could look up "how to shrink a goitre" (or goiter - US spelling) on the web. I must admit, I suspect a lot of the links returned by that search may just be quackery.
Have you ever heard of "Derbyshire Neck"? (Google it.) In a time when people grew and ate food from their own gardens, fields and local farms, rather than importing food from hundreds or thousands of miles away, people in Derbyshire developed goitres because where they lived had too little iodine in the soil for good health. Iodine deficiency is a major cause of a goitre and is still the major cause of hypothyroidism in Asia.
I would suggest that you get an iodine test. It can be tested in multiple ways but many of them are not reliable. Ignore the patch test (it's nonsense), and don't bother with loading tests. The best way to test for iodine levels is to use a urine test.
A good private test for iodine (the only one I know of - there may be others from other companies) :
Go to this link and read the whole section on Genova Diagnostics. They are an awkward company to use because they don't deal directly with the customer.
The urine iodine test is the second one on the list.
Once you have a result you could post it here, but be aware that iodine testing is not often discussed on here and few of us know how to dose to repair a deficiency, maintain a good level, or how to reduce a high level.
hello there, I had a total thyroidectomy in June this year for graves disease and so far I have no regrets.I know yours would be for a different reason, but for me the operation and recovery has been straight forward.If you care to read my story just click on the picture at the side of my name and it is there.Best wishes to you.
Thanks so much for getting in touch, I've read your Bio and was moved by your journey - it's refreshing to hear you are doing well post op. Long may it continue! Can I ask if you had a full thyroidectomy? And whether you supplement to manage vitamin levels etc? As you say our thyroid issues are very different but it's really reassuring to hear from you as I've been completely terrified of the Op for years now. Thanks!
hello again, yes it was a full thyroidectomy and I am doing ok on levothyroxine only.The only vitamins I supplement are selenium as I have thyroid eye disease and it is bebeficial for that.And I take a high dose vitamin C every dayI started that when on the carbimazole as immunity can sometimes be impaired.I had read that someones doctor had advised it when taking carbimazole.I have continued with that.I checked my vitamins a couple of years ago with medichecks and there were no problems, but if I started to feel unwell I would check them again to see if there were issues and supplement with advice from this forum.
I would not consider surgery before establishing FT4 & FT3 levels. Even though TSH indicates nothing wrong with thyroid hormone levels, your goitre evidences there clearly is something going on and although medics always use TSH as their gold standard, it often isn't a reliable indicator of thyroid hormone levels.
If FT4 & FT3 are low and you were to start medicating Levothyroxine there is a chance your goitre would shrink and the need for surgery could be avoided. Have you had thyroid antibodies tested? Have you had a thyroid scan?
Really appreciate your input, the thought of my goitre shrinking gives me butterflies as I had given up hope of that a long time ago.. it is really huge. And it's maddening to think this could poss have been prevented with the right diagnosis and treatment.. for years ive just been told it's benign and my thyroid is good (!). No need to rant as I know this forum has heard it all before!
So yes my next port of call is push for more testing but I know from experience if TSH is within nhs range I'm likely to need to fund this myself. I have had it scanned yes and due another one soon with a biopsy. My understanding is that I will never be prescribed thyroid meds with tsh in range, even if I get t4/t3 checked and these indicate hypo? Thanks again, just being able to talk after years of swallowing my problems and trying to battle on is helping a lot.
'My understanding is that I will never be prescribed thyroid meds with tsh in range, even if I get t4/t3 checked and these indicate hypo?'
Depends on whether you can find a sympathetic doctor that understands thyroid signalling can sometimes go askew. Those members who haven't found a sympathetic doctor or can't afford private care self source meds from abroad and medicate themselves with help from forum members.
It may be because your goitre has been allowed to advance to such a stage, surgery may be necessary but if thyroid hormones are deemed to be inadequate, it was me I would want to try medicating before surgery.
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Weight gain after total thyroidectomy (Graves)
Total Thyroidectomy last week 
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Total thyroidectomy, NDT
