Hypothyroidism and Multinodular goiter - Thyroid UK

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Hypothyroidism and Multinodular goiter

sa1234 profile image
5 Replies

Hi,

I was diagnosed with hypothyroidism on June,2014.My TSH at that time was 13 and I was prescribed 50ug Levothyroxine T4.I had my first Thyroid ultra sound 6 months after starting Levothyroxine and I was very disappointed to hear that I had multinodular goiter.I wasn't expecting it because the endo said my gland should be fine because my TPO was 13.

Anyway,I want to know if anyone has hypothyroidism along with multinodular goiter?

Is it possible that wrong dose(under or over medication) of T4 can cause these nodules?

My TSH was fluctuating in the beginning and the endo kept changing my Levo dose.I complained her many times that I was feeling tightening in my throatand difficulty in swallowing but she didn't listen.But when I had my ultra sound,it was clear that I had nodules.

I still have the nodules and the new doctor ,I saw 2 months ago,said that these nodules won't shrink or go away.So the doctor is just going to keep my thyroid levels under control or within the clinical range.

I know that I have to find a doctor who can listen to me and treat me by my symptoms not by the lab reports.But it's impossible to do this because there are no holistic or integrative doctors or nutritionists where I live.So I have to self-medicate myself.I am going to start with either Natural Dessicated Thyroid (Nutri-med) or T3/T4 combo such as Bitiron or add T3 (cytomel,thyro3 or terteroxin) to my levothyroxine.

I would also like to know how everyone take their basal temperatures ?I take mine with a digital thermometer and I place it under my armpit. I record it daily and it's around 35.7 or 35.8.

But my resting pulse rate is around 70-75.

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sa1234
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5 Replies

Hello sa1234,

Welcome to our forum and sorry to hear that you don't feel well.

I was diagnosed with a multi nodular goitre and hypothyroidism 4 years ago.

My antibodies were high so indicating Hashimotos.

I had a scan and then several cameras down the throat ( not all at once - lol) to ascertain any developments but all was fine.

I have medicated on Levo ever since and just recently added T3 to the mix as didn't convert T4 to T3 properly.

You will have had the multi nodular goitre all along...hence your fluctuating TSH levels and tightening in throat. If there is any cause for concern regarding your goitre, you will be offered an FNA.

Did your endo test TGAb antibodies as well? You can have one or both type ( I had both) of TPOAb and//or TGAb antibodies to determine Hashimotos.

Your thyroid gland will eventually become atrophied and depleted of thyroid gland and the nodules will shrink or disappear.

I would recommend adding T3 if you are already medicating on T4 as I have found this to be beneficial.

I don't always take my temp but take it as you do ..... am & pm when I do,

If you self medicate there are lots of experienced members to guide you on here but you will need either a GP to monitor you and do your labs, ..or be prepared to private test thyroid hormones as these tests are imperative.

If you would like members comments on any recent thyroid hormone test result, please post complete with ranges (numbers in brackets).

Also don't forget thyroid hormone replacement only works well with optimal nutrient levels in the body.

Good luck,

Flower

sa1234 profile image
sa1234 in reply to

Thanks so much Flower for your reply.

The doctors are telling me that I don't need FNA and I pray that my nodules don't grow any bigger and things don't get worse.

I am thinking about adding T3 because I have a feeling that my body is too slow to convert the T4 that I am taking.But whatever I do,I will definitely have regular blood tests just to be safe that I am not over medicating myself.

Can you pls tell me where you got your T3 from?Did you order it online?

I read that T4/T3 should be 4:1 and one should reduce T4 when starting on T3.

How much did you start on?

And thanks again for your help :)

in reply to sa1234

That's a story unto its self sa1234.

I never wanted to self medicate and so fought long and hard for four years. Eventually after feeling very unwell, members' continuous advice that my symptoms and blood test results suggested an addition of T3 could be very beneficial and a GP that said he supported that theory but was not allowed to prescribe himself...)..I found a sympathetic endocrinologist (after spending a LOT of money) and .....he prescribed T3.........hooray I thought ....especially after taking it and instantly feeling better..!!!

However....after just two months my local councils Clinical Commisioning Council decided it was too expensive and have withdrawn my prescription....(..boooo..)...just like that.....they didn't even inform me....

I first became aware of it when my GP rang to say his computer would not allow him to re issue my prescription as drug had been "blacklisted". Luckily he did anyway (although he tells me he could get into serious trouble for this) and is so appalled, he is appealing for my T3 to be reinstated....could take a long while .....and then eventually if my appeal is not upheld ..I can appeal myself , and write to my MP, make an official complaint to NICE, blah, blah, blah....all a lot of work and worry when you don't feel well.

So meanwhile ........I have enough T3 for one more month and then slowly go mad...( no, only joking..)....supplied with details from the lovely kind members of this forum,.....I have been forced to buy some T3 online and will be self medicating. I am still waiting for the T3 to arrive atm. If all appears ok, I shall buy a shed load.

I have notified my endo who said he will support me in any way he can....lovely man...I love 'im...!!

Moral of the story.......DON'T waste time fighting for what you are rightfully entitled to BUT what might eventually be given only to probably be withdrawn again fairly quickly anyway...!!!...

I might fight it.....I might just accept and self medicate.......I feel all used up at the mo !!!! .....self pity...NOT good ..lol.

If you self medicate, there are some very experienced dedicated members who will give sound advice and support on the introduction and dosage of T3.

It would be much more helpful for members if you could supply recent blood test results complete with ranges when you are starting as this will also give you a good baseline to work from.

Again I remind you that NO thyroid meds will work well efficiently if your nutrient levels (Vit D, Vit B12, folate and ferritin especially important ) aren't OPTIMAL....so if in doubt ...have them tested and post results with ranges..a doctors "normal" level is NOT what members have found to be beneficial.

There is a link for private testing at the bottom of my post.

I believe if thyroid hormones are balanced and your bodies responses to the auto immune disease are managed and dampened, your goitre (if still inflamed and giving trouble) will be less antagonised so give you less trouble.....a doctor would never support this theory opting instead to say they just don't know !!!

If you join ThyroidUk which is the charity that supports this forum, there are discounts available on supplements from certain suppliers.

Discounts on certain tests (thyroid related) are available to all...just ensure you put in code as given on Thyroid UK webpage.

Good luck sa1234

Flower007

thyroiduk.org.uk/tuk/testin...

LuckyKat profile image
LuckyKat

Hi Sa1234, It could be well worth your while to investigate iodine because that has been shown to reduce and even eliminate nodules. The case of a woman who did just that has been posted previously.

The Iodine Project and healyourselfathome.com are good places to begin research.

There have been many negative reports about iodine, but that's because selenium levels have not been taken into consideration. Selenium should always be taken at the same time as iodine and the iodine should be the correct balance between iodine and iodide - as in Lugol's solution.

Regards, Katy

sa1234 profile image
sa1234

Thanks a million Flower007 and LuckyKat for your help.

You girls are great! :)

I agree that no one wants to self medicate but when doctors don't listen,we don't have much choice other than to find ways to make our lives better.

I am 34 and I have seen 70+ year old women far much better than me.

I have decided to try NDT(Nutri-meds) first because it contains complete nutrition for thyroid gland.I will see how that goes.

I am taking iodine in the form of kelp supplement and selenium from garlic.But I am very careful with Iodine supplementation because I was told that for some people, thyroid antibodies show up late and one should have at least 4 tests to confirm auto immune thyroid condition.I have had 2 tests and both were less than 15 but I am feeling stiffness in my joints when I wake up and also, i sweat or feel hot in the afternoon.But my basal body temperature is far less than 37.So I will have antibody test again,just to be sure that I don't have hashimoto's.After that,I will think about increasing my Iodine and Selenium dose.

I am also going ask the endo to check my cortisol level along with ferritin,folate and b12.

I did have Vit.D deficiency when I was first tested for hypothyroidsm.I was given Vit.D supps.and when I tested my Vit.D after 3 months,it was 49.5.I was told to maintain that level by taking 5000IU a week.But I have increased that to 10,000IU since last week because I read that when someone is suffering from chronic illness,Vit.D should be at least 70-80 and for cancer patients 100.

Thanks again girls for your help.

Stay healthy,happy and take care..... :)

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