I'm going to be having an ultrasound on my thyroid at some point as it's causing issues..swallowing and breathing etc. There's a slight goitre visible.
If I were to have a thyroidectomy, would my immune system decide to attack something else? I'm positive for TPO antibodies..
I know it might be worth being referred to rhumatology, but let's be honest, it's hard enough getting an appointment.
I ended up in A&E struggling to breathe, they reduced my levo saying I'd gone hyper, yet my GP disagrees. Before all this started I had a pain in my neck, round about where my thyroid is. I'm still on my reduced dose of levo (75mcg)..which makes me think my thyroid was just breaking down and releasing hormone. ...yet I have been really good and not had gluten for a long time, so I'm feeling pretty disheartened
Thanks.
Michaela
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Michaela_l
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How much Levothyroxine were you on before dose was reduced?
How long have you been on 75mcg?
What are vitamin levels like?
What vitamin supplements do you take?
Breathlessness can be low iron/ferritin
Bloods should be retested, ideally after 6 weeks on reduced dose, but if suffering they should by retested now
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Hi, they're redoing b12 etc when I next have bloods, I was on 100mcg then reduced to 75mcg. Just wondering why I get the pain in my neck, along with tablets getting stuck..
FT4 should be in top third of range and FT3 at least half way in range
All four vitamins need to be optimal
Frequently TSH is very low when adequately treated
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
Thanks for that. I can't get hold of results now as they are ffrom A&E but I remember my ft4 being 27.? And tsh I can't remember. Unfortunately the woman who did my.bloods on Monday only did TSH which was 2.8.
I was in 100mcg from 25th march, then on good Friday went down to 75mcg..bloods had done a week earlier when I went into A&E the first time...wasn't retested
Stuck on 75mcg until next bloods in 6 weeks. Like I say, I'm being so good with my diet, even having filtered water to try keep my immune system at bay.
I had a very swolen throat and hoarseness when hashimotos first reared it’s head.ive reduces this by following the guidance on here, self medicating with ndt and getting my vitamin levels in check, I would advise against removal of anything unless you
feel it’s a danger to life.my GP simply told me to wait for my thyroid to die
then take Levo. that wasn’t the answer, hashimotos is an autoimmune disease and the mainstream medical system can’t manage it in my opinion
I've learnt they don't really have a clue..last year I was told I had anxiety. Despite me working in the NHS myself, they just made me feel stupid. It ruined our wedding day and had to cancel honeymoon.
Like I say, I've changed my diet etc..what else can I do. I'm struggling.
I hear you on all of that my daughters life was made very difficult from age of 11-14 because of my struggles. my sister and father have this too. there is hope you just have to keep pushing. the advice around checking your t3 and vitamin levels is spot on, and considering whether you need more than levothyroxine too, it’s clear to me that a large majority of people need t3 or ndt to get the levels they need to feel well. I hope it works out for you xx
I mean..if it does need to come out, which I hope it doesn't come to that, would my immune system decide to attack something else..that's my concern. There's autoimmune issues on both sides of my family. My mother developes renal failure at the age of 15, had a transplant and got pregnant with me a year after..she blames herself for my health..but it is what it is. I had nec as a baby which lead to a bowel resection, then got pneumonia which head to asthma, I'm hypertensive, have an abberant right subclavian artery..and now this..I'm 27 and worried what else is gonna happen.
I get on with it, but I'm not the same any more..I'm not fun any more.
Your test from Monday shows your TSH has risen. Discuss with GP raising Levothyroxine back to 100mcg
Then getting thyroid retested 6 weeks after increase
Getting vitamins optimal and TSH under 2 (possibly TSH needs to be under one)
If symptoms still not resolved after 6 weeks you need TSH, FT4 and FT3
If FT3 remains low when TSH is between 0.4-1.5 and Ft4 near top of range then look at getting referral to endocrinologist for trial of T3
Many, many of us with Hashimoto's need the addition of small dose of T3
Because of current outrageous cost charged by pharmaceutical companies to NHS for Liothyronine it is difficult.....but not impossible to get Liothyronine prescribed on NHS
A private consultation may be a quicker route to get Liothyronine trial initially
Roughly where in the UK are you
Email Dionne at Thyroid Uk for list of recommended thyroid specialists who do prescribe T3
please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to get high enough FT3
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
North East Lincolnshire..and even when I did go private, he agreed to some extent with the guy in my local hospital, but said if I felt like I needed to be on levo...then I should be...so I'm stuck. I don't get why I had a flare up when I've been doing so well..I'll be checking b12 etc on next bloods.
Scotland always seem to have better care, why can't they all be like it..
There's so much contradictory information out there regarding T3. I wouldn't feel safe just taking it and I wouldn't get any help or support around here. I guess I'm just scared that my airway is going to suffer as a result of a goitre..I've had it for years yet no one has picked up on it. I best get ready to feel that drop into more hypothyroidism then. Gluten free yes, soy is difficult but I try..dairy...really gonna struggle. I'm even buying plants to purify the air so my immune system doesn't flare up.
My GP disagrees with A&E regarding the ft4 being too high..he said it wouldn't have caused the breathlessness...and j said this to a&e..but tbh, it's gone away since reducing dose, but it could be coincidence.
It was 27.? I view my results online but as this was A&E I can't. Sorry, I'm just confused. I view the autoimmune issue different to the thryoid hormone..so I don't get how T3 can help flare ups. So confusing.
Of course. Just a high FT4 doesn't necessarily mean your Levothyroxine dose was too high
Only if FT3 was also above range
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
Because your own thyroid is switched off because you are in effect on full replacement dose. On T3 TSH is almost inevitably suppressed
If DIO2 gene is an issue then brain is low on FT3 as conversion is more difficult
For some of us the addition of small dose of T3 is nothing short of miraculous.......but like you I was determined to get treatment via endocrinologist and reluctant to self medicate.
DIO2 gene positive test results helped me in getting NHS to agree to fund
Ok, and I can get access to that test via the thyroid UK website can't I. I know a few people with hashimotos and they're fine..I don't get why I'm not. And work expect me to be fine as well..but I'm really not.
So my own thyroid being switched off affects the autoimmune issue? Like I say, I've seen them as two separate issues.
I really need to get to grips with this..I have to a degree..but I kinda feel on my own with it.
Presumably you have now been on 75mcg for at least 6-8 weeks
Have you had FULL Thyroid and vitamin testing?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely 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 fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Hi, yep follow all the things I should be doing. I was on 100mcg, then went down to 75( a&e said I went hyper, I didn't think I was for me..I run high), now as my tsh was 4.4, been put up to a very annoying 87.5. Just fed up of it all now, I can't seem to get a steady dose; I'm gluten and soy free and even considering going paleo. I currently have a painful thyroid. Started taking vitamin b1 with Q10 to bust energy...but it's the pain, feeling sick, headache, heart still not feeling brilliant and the anxiety attacks I seem to get some of the time. I'm literally doing everything I can do! I've even stopped doing on calls and standby at work as this makes things worse.
Thats what I thought. But with my difficulty in breathing a and e decreased my dose and go reluctant to up it but I said I needed to. I went to a and e on a Friday and they did bloods, sent me home said I was fine. Then I went again, exactly a week later as my condition got worse, they did t redo bloods so I suppose my ft4 cod have gone even higher....but going off the last bloods, Dr said to decrease dose and to be fair it sorted the issue. I'm now back up slightly to 87.5, and I'm unsure about breathing again..I also have horrible thyroid pain which is worrying. I'm bitter, my hashimotos should have been picked up years ago! I'm generally quite down about the whole thing. It's ruined my career, I haven't got children, and I'm 27..but I think this has been going on for years. It's only when my heart started to really mess about and I collapsed that I was kind of taken seriously... endocrinology didn't want to know..
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Hi, no not pregnant. Vitamin D is great now..was incredibly low. Amazes me how many GPs didn't care...it took me paying a private endocrinology consultant to tell my GP to put me on a high dose. I once had a gastro Dr telling me I don't need to take ferritin etc because my heamoglobin etc was high...but I'm thinking....yes, but my ferritin etc is still low, so I ignored him. Terminal ileum wasn't taken, but apparently surgeon took as much as he dared and I was left with a ileostomy...it's now reversed.
Ye, I always stop taking all vitamins a week before testing. Unfortunately im having to relay this information, all sorts of studies and books I've read to my relatives. Fortunately for them, they're older and have children..and are only just becoming symptomatic.
The problem is, gp marks all my tests are normal...I'm a lot more strict when it comes to my bloods than my drs...be it gfr or hba1c etc.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.
Same applies to low B12 - extremely common in hypothyroid patients
All patients who are hypothyroid should have B12 tested
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms, although a placebo effect cannot be excluded, as a number of patients without B12 deficiency also appeared to respond to B12, administration.
Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
Hi, thank you. I mean it, you've helped me loads. Unfortunately I had to lie about what tests were asked for to get vit D checked..and of course the whole ft3 thing. Do difficult!
I'm just fed up, despite me reading books aimed at those studying endocrinology, looking at loads of studies, not jsut the ones you send me..drs still seem to think we don't know our bodies. Like I say, I'm looking at going paleo to help with the autoimmune side of things, and of course keep on with the vitamins!
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Thyroidectomy advice
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