Finding this community has literally been a God send, as i was literally on the brink of giving up completlely! Having had all the hypo symptoms for years now along with periods of depression and lifetime of yo-yoing weight, I was desperately looking to my GP to help me understand what was wrong with me as i just havent felt normal for longer than i can remember and to top it off have been putting on more weight despite forcing myself to exercise everyday to try feel some energy and following a plant based diet. The final straw was a few months ago when he told me basically that it is all in my head and as for the weight gain, high cholesterol, low vitamin d and iron.....if i just ate less and more nutritious foods and exercised more it would resolve itself! At that point i just wanted to punch him in the face i felt so insulted and frustrated!
I then researched for a private endo i could see and a full blood test later plus ultrasound to my thyroid he informed me that I am anaemic, have very low vitamin d levels and B12, concerningly high cholestrol, insulin resistance and a multinodular goitre that they will need to remove as its grown below my collar bone which can be fatal.
Whilst hugely relieved that i am not insane after all, I really do not wish to have my thyroid removed and agreed with the endo to give it 2 months to see if i can do something about it naturally. He gave me a letter to get prescription iron, metaformin, from my gp and a list of vitamins. He advised there was no point going on hormones now as i would need to post op when we would work to get the right balance.
Having done some research I am more adamant now that i do not want to have my thyroid removed! I have read some articles that suggest T3 can help reduce the size of a goitre so thanks to the members on this site I have managed to source some.
Being a complete novice and somewhat scared of self-medicating I would like to ask for some advice please as to whether t3 can help and what dose i should take?
My blood tests are as follows:
FT4 11.8 (9.0-22.0) low range
FT3 3.92 (2.63-5.70) mid range
TSH 1.05 (0.35-4.94) low range
Antithroglobulin 7 (0-40)
Antithyroeroxidase 5 (0-35)
Iron 4.4 (8.0-25.0)
Saturation 5 (20-50)
Ferritin 5 (5-204)
TIBC 81.8 (45-70)
Vit B12 305 (187-883)
Folic acid 2.7 (2.3-17.6)
Red cell folic 162 (180-750)
Vit D 36 (75-150)
Hdl cholesterol 1.52
Ldl 4.71
Triglyceride 2.26 (0.10-2.00)
Cortisol: 251
Insulin: 17.8
Many thanks in advance for any insights on these and any advice on how else to reduce a goitre very much welcomed please, desperatly trying to avoid surgery!
All the best!
Amanda
Xxx
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Tiamosta
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I am very sorry but I don't know anything about goitres and whether T3 will help. But I do want to say what a dreadful time you've had with your GP. He ought to be shot! I sincerely hope that you will consider making a complaint about the way you have been treated (or 'untreated' really) by your GP.
I'm interested to know if you have seen your GP since seeing the private endo, did you get your prescription items and what did your GP say? I hope he hung his head so low that it banged on the floor and knocked some ruddy sense into him.
The more I hear, the more I despair about what is going on in Thyroid World! So many people are being ignored, wrongly labelled and left in dire health.
You need to supplement B12 up to 900-1000. Solgar or Jarrows methylcobalamin sublingual lozenges will help there.
When taking B12 you should also take a B Complex containing Folate (natural) not Folic Acid (synthetic). Thorne Basic B is a good one. That should help bring up your folate level which should be half way in range. Leafy green veg also helps.
Ferritin also needs to be half way in range. Are you getting iron supplement from your GP? Yours is extremely low, an iron infusion could be in order. You need to discuss with your GP.
Vit D needs to be around 100+ - supplement with D3 cholecalciferol, a decent amount like 2000iu daily, you could even start with 5000iu daily and retest in a few months to check levels. When taking D3 you should also take Vit K2. Vit D aids absorption of calcium, K2 directs the calcium to bones and teeth rather than soft tissue and arteries.
Hopefully someone else will come along and make further comments.
Thank you for replying SeasideSusie, you guidance on vitamins alone is a big help already, thank you 🙂.
I did go back to my gp, as i needed a prescription for the iron supplement the Endo recommended. He was not too pleased that i had gone to see an Endo and asked if I knew whether the Endo knew what he was talking about as surgery would not be his first choice, and my thyroid tests are normal.
What can I say.....i just choose to ignore him now.....the sad thing is that over the years i have seen about 5 different gps at the same surgery who all say the same thing. I was even prescribed antidepressants two years ago as the said my symptoms were due to depression 😩. Naively I took the antidepressants as a last resort as could not handle feeling so rotten! I am on venalaflaxenine the highest dose possible, and whilst this dose has helped with mood - the fatigue and pains all over have just worsened. Since reading on here the depression is linked to thyroid issues i have started to reduce my dose with view of coming off completely.
I would have complained about my treatment if i felt this would make a difference, but I have very little faith that it would unfortunately!! 😞😔.
A couple of members has sent me pm's suggesting I ask member greygoose to assist with labtests as he/she is apparently very good at this. 😊
I think you need to start with the question 'Why have I got a goitre'? All your thyroid blood tests are 'normal', so there may not be an obvious reason. Have you considered iodine ? Iodine deficiency can cause goitre.
As for taking T3 to reduce the goitre, I have to say that I think it's madness. Your thyroid blood tests are spot on currently and taking any thyroid hormone when not needed is not at all advisable.
As someone who had the very same goitre as you for 13 years before I had a TT, I would say you've just got to go ahead and get the TT done. I doubt if there's anything you can do to reduce it and the endo who gave you 2 months knows it!
But you are doing the right thing sorting out your vitamins and minerals. You need to make sure that iron, calcium, B12, B9 ( folate) and vit D are all up in range ideally before you have the op. If you do that then you will recover much better afterwards.
Thank you, when i asked the endo what causes a goitre he said its just one of those things that happen with a sluggish thyroid.
Any advice on how or where to find out more much appreciated. Google can be a mindfield in its own right as so i have come across a lot of contradictory information, so knowing what or who to believe is somewhat tricky!
Do you mind sharing if you feel much better post TT.
What concerned me was the amount of people who feel life after TT is worse and that i just can not even contemplate given how yucky i feel now .......!
I feel for you. I have a multi modular goiter which is sub sternal. I have tried everything to avoid surgery and sought opinion of 3 doctors and 2 surgeons. I had a specialized MRI and was told due to the alarming way it's growing and as its "diving" surgery is the only way for this type. It is also pressing on the carotid artery I tried all natural therapies for at least 6 months. Thx nodule kept growing and is now decked suspicious. What is the size of your goiter? I have 5 nodules 3.5cm and 2.8cm on left and 2.9 2.1 and 1.8cm on right.
I have surgery in 2 days and am terrified.
My thyroid function is "normal" although I feel terrible.
I am so with you and will be thinking about you over the next few days sending thoughts of wellness and wholesome recovery xxx
Do you know what caused your goitre? Some research i have done suggests leaky gut, so i am now doing the clean gut programme and a parasitic cleanse as well as no gluten or dairy.......who knows ... But i guess cant harm even if it doesnt cure.
Do you mind me asking if you are experiencing all the hypo symptons including weightgain?
Its very confusing trying to get your head round what normal thyroid blood tests actuallys means and how this can be so with a goitre/sluggish thyroid. Guess i am only at the beginning of the process of a lifetime of ongoing education...!!
From what i can tell from the scan report (which in itself is somewhat confusing). My right lobe measures 2.3cm AP (no idea what AP means), left lobe 1.6 (ap). 3 degenerative nodules on the right lobe 3mm in size.
Isthmus is homogenous.
Left lobe 5 nodules;
2.5
5.6x3.5x7.5
A nodule with previous complication U2 ( again no idea what that is)
11x8x12
And last 6
It is the left lobe that is extending retrosternally which is the cause for concern.
The above are the exact extracts from the report. I have not gone for a second opinion as the endo is meant to be the best in this space in london and as i have had to see him privately and pay for all tests privately I simply cant afford to go see one or two more.
Please let me know how you get on and dont be petrified you have tried all else and this is the solution for you so positive thoughts!! It will all go well and we will talk about it in a few days time and over the coming months as you recover 😉Xx
Hi Tiamosta, Sorry to hear you're having such problems.
SeasideSusie has given you some wonderful advice about supplements. I would just add that you should take 5000 mcg sublingual methylcobalamin to bring up your B12 as rapidly as possible.
I would also suggest that you take some magnesium and zinc with the Vit D3, because these are bound to be low, too. Also, take lots of vit C. You can build up to 5000 mg - definately take at least 1000 with your iron, because it increases absorption. Take extra at bedtime up to gut tolérance.
But, do not start taking a bunch of supplements at the same time. One at a time, and leave about two weeks before starting the next. Because, in the even that one of them doesn't suit you - which is always a possibility - you won't know which one it is, and will have to start all over again.
Townplanner makes a valid point. Why have you got a goitre? It could indeed be due to iodine deficiency. BUT... whatever you do, do not start supplementing iodine without first getting tested to see if you need it. Because an excess of iodine can also cause a goitre. And, you should only supplement iodine under the care of a doctor who knows what he's doing - and they are rather difficult to find.
The goitre means that your thyroid is working very hard - for some reason - to make hormone. In your case, it's not because the TSH is flogging it, because your TSH is reasonable. However, your FT4 is low, and your FT3 is lowish - below mid-range, actually.
But, I'm not sure that T3 is especially going to help, because you are converting correctly. Could be that just a little Levo would improve things. And, I think your private endo is wrong in not wanting to treat your mild hypo, but he's obviously got his heart set on a TT. I think he should, at least, give you a trial of Levo and see if it helps. But, of course, if he won't do that, there would be no harm in trialling the T3.
If you are going to self-medicate, the general rule is : start low and work up slowly. If we're talking about T3, that would mean starting on half a tablet - or even a quarter of a tablet - and increasing by a half/quarter tablet every two weeks. That's the general rule. But, in reality, you have to listen to your body and see how it suits you. Don't go faster than your body can take. And stop if you feel it isn't agreeing with you. Plus, of course, there is always this forum to help you on your way.
I don't think doctors are always right - they have their own agenda, their own preferences for treatment which aren't necessarily right for you. I think you should follow your gut instinct, but be very careful how you do it.
Thank you Greygoose - very helpful and much appreciated.
Can i please check how you know i am 'converting correctly' from the blood tests? I feel like I'm learning to speak a whole new language, so please bare with me!
Is the levo that you suggest might help also available online? And can i cause more damage if i do trial some of t3?
I literaly feel like i am putting weight on day by day and its an uncomfortable ,'swollen-like' feeling as my mid-section feels distended all the time. This with feeling like i just want to sleep for lack of energy and lack of memory recall and permanent achilles tendinitis is making life very difficult. The memory recall is really concerning as i feel its beginning to affect work as i sit there and literally have to spend minutes trying to recall a colleagues name, or common professional terms we use or even just basic grammar and spelling!!! Most days i feel like im becoming stupid and losing my intellect completely 😫, scary scary scary but try share that with friends or family !!!
Thank you for sharing your wisdom and experience, I hope you know just how much you are impacting lives positively in doing so. Quite a few people have sent me pm's now recommending your counsel 😊.
I know you are converting because your FT3 is higher than the FT4 in their respective ranges. That's all. lol And, yes, you are learning a new language! But, soon, you will speak fluent thyroid!
T4 is available on-line, but I thought you might be able to get it from your doctor if you sat down and had a heart to heart with him. He's more likely to prescribe that than T3. But, if you're going to buy on-line, you might as well get T3. Although, I have to say, a lot of people need to take both. It's a question of balance, I guess. And, it's all trial and error. Nobody, not even a doctor, can predict what you are going to need in the beginning. But, it is usual to start with Levo, and, it's the cheapest!
No, you won't do yourself any harm taking T3, if you listen carefully to your body. Monitor your symptoms. Are they getting better or worse? Are there any new symptoms that you didn't have before you started? What is your pulse, what is your temperature? There are all sorts of simple ways to monitor yourself. Take your pulse and temperature before starting, so that you have a base line, and see how it goes. Above all, do not be in a hurry. It all takes time. And, at the slightest sign of new problems, or aggravated problems, post on here for advice.
Your failing memory certainly does sound like hypo, rather than you going crazy! lol And, it will improve with time. And, no, nobody who has never been through all this can understand or appreciate all that it does to you.
GG, goes this mean that if both your FTs are low (in range, but at the bottom of range), that could point to a possible rt3 problem, meaning that T4 gets converted to rt3 rather than T3, causing both FTs to be lowish...?
I don't know about that. I somehow doubt it, though. I think it just means she's not getting enough hormone from her gland. Possibly secondary hypo seems more likely to me. Although neither scenario fits with the goitre, I have to say. I'll have to let someone more knowledgeable than I answer that. I can only cover the basics.
I understand. I was more thinking about the scenario where someone is already on thyroid hormone replacement, has a low or even suppressed TSH, yet the FTs remain lowish...from what I've been able to find out, that could point to an Rt3 problem, although very few doctors know such a thing exists, and very few labs test it.
Thank you, i have been taking my body temprature this week after reading about it on here and so far average for the week is around 94.5f. Been doing this every morning, but read somewhere else today that it should be taken 3 times a day...
Forgot to mention earlier freezing cold feet - sleep with a hot water bottle winter and summer otherwise it keeps me awake, the only difference being in winter i add 3 pairs of socks lol.
Looking into this secondary hyperthyroidism business in search of more answers 😉
Evening Greygoose, hope you have had good day today! Just sorting out the additional vitamins I need to get as per your recommendation above and just wanted to ask you what strength vitamin K and Zinc is advisable please? And is it Zinc Picolinate?
I agree about the iodine advice that Greygoose has given you, get the level checked before you do anything. Actually it's fairly unlikely to be the cause but it's worth ruling out.
I'm most concerned about the following that you were told...."a multinodular goitre that they will need to remove as its grown below my collar bone which can be fatal".
How can you say that you don't want the TT when a doctor has warned you that it could be fatal? That's basically what I was warned after having mine for 13 years.
And you know what ? Not having the goitre pressing on my neck, and looking awful is a massive relief in itself and I didn't feel great during the time I had it, although my bloods were normal and I was on no medication.
Yes, it can be tricky recovering from a TT and there are things to be aware of, but you are halfway there and sometimes as hard as it is to accept, there is sometimes only one way forward and that in this case is to bite the bullet and have the TT.
Mine was 6 years ago and I function at 95%, probably feel better on the whole than I did before the TT. It's certainly not something to be scared of or worried about.
Email me if you like for any further info on hazelender@aol.com. I run a group for people who have had TTs.
I had my iodine levels checked a few years ago. The results showed that my iodine was slightly low. I asked my GP and endo what I could do to improve things and both told me that the test was pointless because levels change daily depending mostly on the type and quantity of food consumed. I'm not sure if this is correct, but this was the first time that both my GP and endo agreed on something!
But have you ( or did you have a goitre) ? There may be some truth in what you were told but in areas of the world where there is iodine deficiency, goitres are more prevalent. In the UK it's not a very likely cause anyway.
Hi Townplanner, just noticed my reply did not actually go through! Knowing my brain at the moment I probably wrote the reply and then failed to hit submit!! Doh! Apologies! I will definitely take you up on your kind offer and Vicksters may be interested too as she is being operated Tom I believe, assuming 'she'.
To try explain my logic or lack of logic you may think....after years of consistently being told my thyroid was normal, when the endo told me the news, I was slightly overwhelmed and in shock. He also said that nodules might be cancerous, tho he couldnot be sure and only a biopsy would confirm which in his view would be pointless as I should have the thyroid removed.
Having for a long time been sceptical about mainstream medicines focus on curing cause versus symptons and armed with detailed knowledge about how chemo and radiotherapy actually cause more progressive cancer post remission and the Fda refusing point blank to license other treatments that have been scientifically proved to be more effective cures, my natural instinct was to do some self research prior to committing to an op...
I did ask the endo whether a 2 month delay would be critical and he confirmed not. I therefore do not believe I am being callous with my health. I strongly believe in intuition and gut instict and everything inside of me was screaming not to commit to surgery straight away. I recognise ultimately this may be where I end up when I return in July at which point I will accept this that is the right solution. Who knows maybe this time is meant to be forto educate myself thoroughly so that when and if I do have a TT, I am better equipped and informed to copeand deal with it.
I hope this makes some sense and helps explain my approach..
I'm in a similar situation to you. I have had a large multi-nodular goitre for many years with loads of other symptoms, but 'normal' T3 & T4. My TSH is very low and have been told by endo and ENT to have a TT. However, when it's gone, it's gone! I didn't really want to be on meds the rest of my life which might make things worse with regards to symptoms. It's so easy for the medical profession to say, "you've got a problem, so cut it out", but we have to live with the consequences.
Indeed PeteRad, seems so easy for them to say this when they do not have to live with the consequences. Have you read the responses from Sandy12. May be worthing having a look as he has shared with me an e-book he wrote which outlines in detail the condition ISTH (basically when you body is resistant to T3, a genetic condition which if someone has explains why blood tests would show normal range with a goitre present and Hypo symptoms. I am not suggesting that this is what you have and can not confirm it is what I have, but has certainly opened my eyes and increased my knowledge of possible options. People with this condition may have normal T3 production but body just isn't using it so you actually need an overdose of T3 and this then actually decreases the size of the goitre. I highly recommend the book as it is very easy reading and written in layman terms so easy to understand and makes a whole lot of sense. More importantly it is also back up with all the reference source information if you want to go and do the research yourself.
Thank you very much Sandy12, very helpful and makes me more determined to give the t3 a go!!! As it is i do have a family history of thyroid issues, grandparents and a couple of first cousins so well worth looking into thyroid hormone resistance. Its beginning to feel like there may be some light at the end of the tunnel 😊😊😊. I am surprised (or maybe shouldn't be), that the endo did not discussion the option clearly available to shrink goitres, so will definitely raise with him to see what response i get!
Just finished reading your book Sandy12 and it's brilliant!!!! Thank you, thank you!!!! Whats the lowest dose of T3 ISTH patients should start with? Are you able to advise or is it question on trial n error? I ask as some of dosages quoted in your book seem much higher than those suggested for other causes of hypothyroidism I get with ISTH higher is better, just trying to understand what the minimum high dose is to build up from there. Thank you! Your book has been incredibly illuminating and educational!
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