Toxic multi nodular goitre

[Bluesammy]

Ultrasound showed no enlargement of thyroid, just heterogenous (bumpy?) appearance with (due to?) small nodules throughout. Negative thyroid antibodies with TPO of 20 (TG antibodies not checked). Different opinions as to cause ie 1. Nodules are producing thyroxin leading to hyperthyroidism and 2. Nodules too small to produce thyroxin so probably caused by a virus and should settle down (did have a virus shortly before thyrotoxic crisis. RAI advised after 18 months carbimazole. Carbimazole gradually reduced and stopped after a few months as blood tests back to normal and was being over medicated. Remission for 6 months then caught another virus and now hyperthyroid again and back on Any thoughts from anyone? Anyone had anything similar? Should I get TG antibodies checked? TPO of 20 is in normal range but does anyone know of optimal no? Presumably zero? Any tips on reducing? Really don’t want RAI. Anyone had success with a natural approach (ie no drugs, RAI or surgery?). Think RAI is extreme measure in the circumstances. Do you agree? Any recommendations. All other bloods are normal.

[Pascha1]

Dont let them kill thyroid off if you do well on Carbimazole, as you may go into remision ! its safe and as long as you have regular liver checks Carb is ok to take long term...

If you have RAI or Surgery you will definitely become Hypothyroid and have to take Levothyroxine the rest of your life, so swapping one disease for an even worse one ..

I had sub thyroidectomy and never felt well since. so if I had my chance again I would of stayed on Carb

I have a freind who worked on Vitamins and went into remision

I would suggest get Dr to test Vit D, Folate B12 ferritin , selenium and Magnesium , Zinc and copper.

it maybe your vitamins being low has caused this.. you can put results on here and people will tell you if they are ok or not, Sorry Drs dont really care much on getting Vitamins right they say they are in range thats ok.. this isnt the case you may have to supplement them yourself, but many go into remission when they get them right

Gluten can also be a factor alcohol Lactose, all these I would cut out one by one not all in one go as if you go into remission you will noyt know what caused it.....

join hyperthyroid sites on facebook..

Ask on hypothyroid sites how people are after RAI and surgery, as many do not feel well and are only offered levothyroxine which does not work for all,

I would hang onto your thyroid as long as you can,

Do not get bullied into RAI or surgery if you feel well and stable on Carb you do not have to have RAI or Surgery it is your body so your shout what you want to do

r can they make you have it done,, they like to kill thyroid off to get you back into primary care so is a cost thing..

I would also get copies of all blood test from now on as I see some Drs leave hyperthyroids being Hypo annd they think its the hyper making them unwell and its being left Hypo that makes them unwell...

you will have to start learning what you can as I wouldnt leave it to dr to make you well if an Endo gets heavy on bullying you to kill thyroid off you are entitled to a second opinion and Thyroid UK has a list of decent Endos who will work with you rather than going in for the kill off the thyroid attitude..

Good luck

[greygoose]

TPO antibodies, if high, indicate Hashi's. Sounds as if you need to be tested tested for Grave's: TRAB or TSI antibodies.

If you test Tg antibodies, and they are very high, that will also indicate Hashi's. But, with Hashi's, which starts with high levels of thyroid hormone, you will eventually go hypo. Have you had any hypo periods? Or just hyper? Do you have any blood test results to share with us (TSH, FT4 and FT3 with ranges) because that could give us a clue as to whether it's Grave's or Hashi's. But, at the moment, they don't really seem to know what they're doing.

So, yes, I do think you need more testing.

TPO of 20 is in normal range but does anyone know of optimal no? Presumably zero?

There is no optimal level for antibodies. It's either negative or positive. doubtful if anyone would ever have zero antibodies. Most people have some. It's if they are over-range that they confirm Hashi's. However, you can have Hashi's without ever having over-range antibodies.

Anyone had success with a natural approach (ie no drugs, RAI or surgery?).

As far as I know, there is not 'natural' approach to anything concerning the thyroid. But, if you have Grave's, anti-thyroid drugs can bring around remission. If you have Hashi's, on the other hand, anti-thyroid drugs are the wrong thing to take because the levels will go down by themselves.

Think RAI is extreme measure in the circumstances.

I totally agree. It should be a last resort - especially if you turn out to have Hashi's! But, it is the preferred solution of most doctors, because it makes life easier for them. Doesn't do much for the patient, though, because once they've made you hypo, they have no idea how to treat it. Hang on to your thyroid for as long as you can!

[Pascha1 in reply to greygoose]

I have no antibodies at all so I would think no anti bodies at all but see what others say...

[greygoose in reply to Pascha1]

It's very rare to have no antibodies at all. Most people have some, even if they don't have thyroid problems.

Did you have Grave's? I really don't think you can have Grave's without antibodies, even though you can have Hashi's with very low antibodies.

[Pascha1 in reply to greygoose]

I was very hyperthyroid when younger, I tbh do not know if was graves or not, they have destroyed my notes, my eyes were very out on stalks popping out so may of had graves I was given a sub thyroidectomy after few months So who knows may have been Thyroid hormone resitance as reading about that lately I have no way of telling, but definitlwy no antibodies as tested quite a bit..

[greygoose in reply to Pascha1]

Thyroid hormone resistance wouldn't make you hyper. Your labs would look 'normal'.

[pennyannie]

Hello Bluesammy

I think before you commit to any major decision you need to know what you have been diagnosed with and ask for a full thyroid blood panel including TSI/TRab antibodies which are the ones for Graves Disease and for which the medication Carbimazole is prescribed.

Once with these results post everything back on here, and people more able than me, will advise accordingly.

There are people staying on ATDs for many years and believe this is the best option if you do indeed have Graves Disease. The thyroid is a major gland responsible for so much of your daily, bodily functions, and currently with only Levothyroxine on the NHS table for the treatment of hypothyroidism, living without a thyroid can come with it's own set of issues.

The NHS tend to give patients a 15 month window for treatment with ATDs and in my experience, though well and ok on the Carbimazole the treatment was then stopped and RAI implemented. It's as though they go through the motions with ATDs knowing it's not going to be long term, don't to waste too much time on it all, as ultimately you 'll be zapped.

I'm with Graves post thyroid ablation in 2005, and deeply regret being compliant, believing the doctors, and trusting that I would be better by drinking a toxic substance.

RAI is known to increase the risk of thyroid eye disease and it is also taken up to a lesser degree by other glands and organs within the body.

It is also known that after RAI treatment, hypothyroidism is more difficult to manage.

I could go on, but shall stop here, as none of this is currently relevant as you don't actually have a diagnosis.

[Bluesammy in reply to pennyannie]

Thank you very much for taking the time to reply. My diagnosis is non autoimmune toxic multi nodular goitre ie the nodules within the thyroid autonomously produce excess thyroxine, hence the need for the carbimazole to block the thyroxin. Will check out yours and other suggestions I’ve been given, Thanks again. Much appreciated.

[greygoose in reply to Bluesammy]

I'm not sure that's what carbimazole does. It stops the thyroid making too much hormone, but I'm not sure it has any effect on hormone produced by nodules. Any way, you said there were other opinions as to the cause of your high levels, so that doesn't sound like a very conclusive 'diagnosis'. And, I don't think any diagnosis can be conclusive until they've done the right tests. Do you know exactly what tests have been done to date, and what the results were?

[Pascha1 in reply to Bluesammy]

I had surgery 36 years ago and still do not feel good so Surgery is no better, I wish I had satyed on Carb tried different things like vitamins ect,, what the dr tells you is ok with Vitamins may not be whats optimal for you, get print out of results and post on here, someone will help you with them all.. I had B12 deficiency for about 25 years seeing my medical records no one told me about it,, do not trust Drs anymore.

[Bluesammy]

Thank you to everyone who took the time and trouble to reply to me. I'm quite new to this so apologies for not having all the information I need and not explaining myself very well. Here goes again: I have been diagnosed with a toxic multi-nodular goitre by the Endocrinologist. My diagnosis doubt came in as a result of other things I was also told along the way ie:

1. When I was admitted to hospital via A & E with thyrotoxicosis, because I have no family

history of autoimmunity (and I don't have the eye condition associated with autoimmuune thyroid) and because my TPOAb was normal at 20 (range <35 = normal) I was determined not to be auto-immune. Endocrinologist felt my condition was likely to represent a toxic multi-nodular goitre, pending results from Sonographer after ultrasound. But "No palpable goitre" was noted on hospital discharge form.

3. Dr at A & E said the thyroid crisis was probably due to the a recent virus.

4. Sonographer who took the ultra sound said that the nodules were small and not large enough to produce thyroxin and that the thyrotoxic crisis was probably due to a virus (I had actually had a chest infection a few weeks before where the cough had lingered, but she didn't know that, as far as I know).

5. Sonographer reported that the thyroid is normal size. My understanding is that a goitre is an enlarged thyroid.

My blood test results as requested:

Feb 2015 When still well (as far as I know) - TSH was 2.4 (0.27 - 4.20) but no other thyroid results.

Apr 2017 After a chest infection in Jan 2017 and still feeling unwell, TSH 2) was 0.56 (0.27 - 4.20) but no other thyroid results.

1 Apr 2018 After another chest infection in Jan 2018, I experienced thyrotoxic crisis, as detailed above. Started carbimazole 20mg (by hospital). Blood results:

TSH <0.02 (0.27 - 4.20)

FT4 = 71 (9.00 - 26.00)

FT3 = 15.9 (2.80 - 7.10)

30 May 2018 bloods:

TSH <0.05 (0.27 - 4.20)

FT4 = 16.7 (9.00 - 26.00)

FT3 = 4.3 (2.80 - 7.10)

Carbimazole reduced to 10mg (by Endocrinologist)

June 2018 bloods:

TSH = 0.95 (0.27 - 4.20)

FT4 = 13.9 (9.00 - 26.00)

FT3 = 3.8 (2.80 - 7.10)

Retained on 10mg carbimazole (by Endo)

Aug 2018 bloods:

TSH = 3.3 (0.27 - 4.20)

FT4 = 16 (9.00 - 26.00)

FT3 not taken

Feeling unwell with palpitations, increased heart rate, anxiety etc.

Endo advised must be a virus as blood results normal, take propranolol for symptoms and stay on 10mg carbimazole until Sept 2019 when I would be taken off it pending RAI (which I said I don't want; too early to decide).

Sep 2018 Feeling increasingly unwell with same symptoms. Blood tests via GP:

TSH = 9.18 (0.27 - 4.20)

FT4 = 16.7 (9.00 - 26.00)

FT3 not taken

Apparently it is the labs that decide whether FT3 test is needed and they ignore GP requests for it if they don't think it necessary. Seems that FT4 only done if TSH out of range and FT3 only done if FT4 out of range.

GP advised me to reduce carbimazole to 5mg.

Nov 2018. Feeling unwell again, same symptoms as previously (I get the same symptoms whether deemed hyper or hypo). Blood tests via GP:

TSH = 6.42 (0.27 - 4.20)

FT4 = 14.9 (9.00 - 26.00)

FT3 not taken

GP advised me to stop taking carbimazole

3 Jan 2019 Blood test via hospital GP :

TSH = 1.5 (0.30 - 4.20)

FT4 = 17.7 (12.00 - 22.00)

FT3 = 4.9 (4.00 - 6.80)

Still not taking carbimazole (since Nov 18). Endo surprised by results. Said "everyone is different but you'll probably have a relapse (as I keep being told by Doctors). It might only be one of the nodules that is producing the thyroxin" .

27/02/19 Blood tests via GP:

TSH= 1.4 (0.27 - 4.20)

FT4 not taken

FT3 not taken

Still not taking carbimazole

June 2019 after another cold/cough/chest infection in May 2019, bloods via GP after symptoms reappeared:

TSH = 0.04 (0.27 - 4.20)

FT4 = 27.7 (9.00 - 26.00)

FT3 not taken

Carbimazole 5mg for 2 weeks and then stopped when symptoms disappeared

Sept 2019 Symptoms returned. Bloods via GP:

TSH = 0.31 (0.27 - 4.20)

FT4 not taken

FT3 not taken

5mg carbimazole started again and still on to date. Reluctance by GP as I'm within range and so results are "normal".

I am going to try to get answers to my own questions that I have (detailed at beginning of post). I will also ask for the other antibody tests. TSI antibodies, TG and TRAb tests have been mentioned on this Forum. Do I need all of these? I currently only have TPOAb taken 01/04/18. Should I get that one re-tested now as well? I will also ask for a full blood , urea & electrolytes and anything else I can get the GP to do. In Sept 18, all these were normal.

Other results I have that have been mentioned are:

Vit D = 129 (I do supplement and get this checked every year since 2013 when it was 88 - just because I know its important)

Ferritin = 194 (15.00 - 350.00)

I haven't had Folate, B12, selenium, magnesium, zinc or copper checked. Are these tests available via GP's? Next appt with GP is 17/10/19. Don't know whether I will be referred back to Endo. (Once I was euthyroid, he referred me back to GP to monitor and re-refer back to him as/when FT4 and FT3 rise. Bit of a joke when they won't necessarily check them!)

Grateful for any comments, advice, tips, test recommendations etc that you may want to offer. Thank you very much. Really appreciated.

Sorry for the really long post - bet you wished you hadn't asked now!