Total thyroidectomy

[Feelingtired123]

Hello I’m about to have a total thyroidectomy as I’ve had Graves’ disease for the past 20 years. I’m thinking about when I come out of hospital and that I’d like to try the pig thyroid treatment. Please can anyone tell me their experiences as there seems to be be quite a few different types. Many thanks

[SlowDragon Administrator]

Are you in the U.K.? If so there are almost no medics who will prescribe NDT (pig thyroid)

Make sure to regularly get vitamin D, folate, ferritin and B12 tested as well as TSH, FT3 and FT4

[Feelingtired123 in reply to SlowDragon]

Hi SlowDragon

Yes I’m in uk. I thought that might be the case. I will give the thyroxin a go first as that’s what I’ll be given when in hospital. Thanks for the advice re vits etc. They put me on 20,000 mg vitamin D about 5 weeks ago to help with the calcium drop. Thank you for replying, much appreciated.

[pennyannie]

I wish you well and if you can find NDT available on the Nhs in your area, let alone at your doctors surgery, you will be very lucky to get a Nhs prescription.

I too have Graves and had Rai in 2005. Treatment was levothyroxine. I became very unwell about 5 years ago. I have had no help from any Nhs department.

I am now self medicating with NDT and know this is the way forward for me.

Graves Disease is for life, it's an autoimmune disease that attacks the body. The thyroid is the victim in all this, and not the cause. True, Graves disease can be life threatening if not treated but your life can be limited if the appropriate thyroid hormones are not replaced.

Graves Disease A Practical Guide by Elaine Moore - there is a website ( USA )

Hyper to Hypo to Healing by Barbara S Lougheed ( USA ) detailing the TSH in relation to Graves :

Your thyroid and How to Keep it Healthy by Dr Barry Durrant Peatfield - everything we all should know about everything thyroid -

All three above book are written by people with the disease and the problems encountered in trying to get better in a system that sometimes feels as though it doesn't care.

[Feelingtired123 in reply to pennyannie]

Hi Pennieannie

Thank you so much for the advice. I have read the peatfeild book but not the other 2. I have tried over the years pretty much every alternative but now just worn out ( I’m 53) and really ready for the op. I know it won’t be plain sailing though afterwards. Thank you for your help.

[pennyannie in reply to Feelingtired123]

Hey there, just rereading my ramble from yesterday - I hope you got the drift of my gobblegook - Life without a thyroid can be life limiting and it is essential that both thyroid hormones are available, on prescription, from the Nhs, should you need them in order to regain some QOL.

Good luck - xx

[Feelingtired123 in reply to pennyannie]

Thank you. I think I’m going to keep with the thyroxine and hope that it works.

[Feelingtired123 in reply to Feelingtired123]

I’m also going to ask about the T3. It’s so strange to think after 20 years having Graves and being on and off carbimizole that I’m suddenly going to be the opposite.

[MaisieGray]

Natural desiccated thyroid, whether bovine or porcine, is unlicensed in the UK, and as SlowDragon says, very few NHS Drs will prescribe it, partly because it is unlicensed (although they are perfectly free to prescribe unlicensed drugs where they believe it is appropriate to do so), and partly because NHS Drs are taught that synthetic T4 is the gold standard of treatment for hypothyroidism. This was reiterated in the most recent prescribing guidance from the RMOC in Nov 2018, wherein it stated "The prescribing of unlicensed liothyronine and thyroid extract products is not supported." However, there aren't really quite a few different types of NDT, as you say. In the most basic of terms, the mainly porcine, but sometimes bovine thyroid glands are desiccated and combined in controlled amounts, with excipients, to form tablets. Some companies market their product as a food supplement to manoeuvre around drug licensing rules, but the principle is the same as with licensed drugs. What differs is the various inactive excipients, so someone with an intolerance to one of them, might need to avoid one brand containing it, in favour of another that doesn't. My experience was to swap from synthetic T3/T4 combo to US Naturethroid, and then to Thai ThyroidS, and then back to synthetic T3/T4 combo with absolutely no difference between them; but that won't be everyone's experience.

[Feelingtired123 in reply to MaisieGray]

Thank you MaisieGray. This is great advice. What a minefield it seems with all the variants. I have to have what I’m given by the endocrinologist while in hospital so I’m really hoping it works but if not then I will start the search for the best porcine or bovine thyroid replacement. I really appreciate all the advice, thanks.

[LAHs]

When you first come out of surgery you should be on T3 only for about 3 months. This was my personal experience and I felt great just a day after getting home - I even went back to work. If you do this you will be strong to change to other medications - and join the club to fiddle around with your dose and brand. Yes, I would agree, if you can get "pig thyroid" go for it. I would suggest emailing the manufacturer (Forrest Pharmaceuticals in the NE USA and ask how you can obtain their product - Google their address/contact info. But whatever you end up on, try to go for the T3 only for at least the first 3 months.

[Feelingtired123 in reply to LAHs]

Thanks so much for reply which I’ve only just seen. I’m going to ask doc about T3 although he has told me I’m in range but I’m only just in range so I know it could be better with T3. Thanks again

[Thyrigia]

Have only just seen your post Feelingtired123 I sincerely apologise if this is coming too late. If, at all possible, avoid having a total thyroiodectomy. This happened to me many years ago and has proved the bane of my life. I would not wish it on anyone. Request that they look into the cause of how you have come to have Grave's or a thyroid problem per se. Also find out what alternative treatment/s could they suggest you have. Do anything you can to avoid total removal. Leaving some thyroid tisssue - as much as possible - should also be discussed. Surgical intervention or just treating symptoms may not alleviate what it is that ails you.

[Feelingtired123 in reply to Thyrigia]

Thanks so much for reply, I’ve already had TT. As it happened they found a cancerous tumour inside thyroid so I was relieved it was out. I tried for 20 odd years all alternative diets and treatments but nothing stopped it. I actually ( touching wood!) feel a whole let better but it’s early days I know. I’m so sorry to hear you’re not doing too well though. Are you on Levothyroxine ?

[Sophitje]

Hello,

I also have graves and scheduled to have a total thyroidectomy in 2 weeks time. I could not stay on carbimazole which worked initially (8 years remission after block replace) because of adverse reaction to the drug (sore throat, neutrophils fall). I am now on lithium until the op and this is keeping me euthyroid with no side effect. The endo team I've been seeing are excellent.

How did your op go and how do you feel now on the thyroxine replacement?

Thank you for sharing your experience.

[Feelingtired123 in reply to Sophitje]

Thanks for your reply, I hope you’re not too worried about op. It actually wasn’t as bad as I thought it would be. Please do contact me afterwards if you need to know anything concerning recovery. Of course it is a major op and will knock you for a good 2 weeks so don’t do anything work wise but once you have got over that bit it’s not too bad. I’ve had a few issues like loss of appetite but that’s ok now. I’m experiecing slight dizzyness still but being monitored. When I went for post op they told me that during the biopsy they discovered I had a cancerous tumour inside thyroid so I was so pleased it was out of my body! I’m feeling so much better compared to how I was. Currently no brain fog and head feeling like it was immersed in custard, no extreme fatigue, no tearfulness, no lack of energy. Now I’m just adjusting to Levothyroxine, 125 gms at the moment. I’m told though that this can change. I’m not sure I want to stay on Levothyroxine so I’m researching ndt but can’t find an organic type as it makes sense to have cleanest version possible. I hope this helps and good luck.

[Greekchick in reply to Sophitje]

Hi Sophitje,

I just had a TT three weeks ago. I was diagnosed with Graves 2 years ago and was well controlled on Tapazole until I became resistant to it last October. I also had a multinodular toxic goiter and it was very large. It had to be removed.

Overall, despite some ups and downs with my recovery (uncontrolled crying, hives, and post surgical stress) my surgery was very successful. I am on 100 mcg Synthroid, and over the last 3 weeks, I feel a little better every day. My bloodwork seems to be going on the right direction and I can feel that it is working. I managed to walk 1/2 hour yesterday and today. It is not easy and I am not by any means trying to make it sound like I have no issues , because I do. The crying is tough. However, some health issues I attributed to other causes disappeared after my TT (skin problems, back and neck problems and other issues) and overall I do feel improved.

One thing that helped me was that I had great confidence in my surgeon and that he would do a good job. Also, even though my pre op biopsies were benign, I did have precancerous cells when they did the final pathology report. This does not mean I would have gotten cancer, but I would have needed to be monitored for a long time if I hadn’t had the TT. I was grateful it came out.

I hope you have a good outcome. As others on this wonderful forum have given me good advice, I will pass some of it on to you. Be kind to yourself and don’t expect too much when you get home. Eat well, rest well, and do as your body dictates. You will have to have some patience as things take time to adjust. The removal of the thyroid is major and your body will react in ways you may not expect. Take it one day at a time. I’ll be happy to answer if you want to reach out.

Sending you good thoughts and best wishes for your upcoming surgery.

[Sophitje in reply to Greekchick]

Thank you very much for sharing your experience, it's very useful. I'm glad you are on the right track to full recovery. All the very best

[Sophitje]

Thank you for reply, I'm glad you're doing OK. I'm not too worried about the op, I've read a few stories, mainly positive, but I hope I will be OK on levothyroxine after. I took it before when on block and replace treatment and apart from the dosage fine tuning, I felt perfectly fine. But I still had a thyroid back then even though it was suppressed. I'm sorry to hear they found a cancerous tumour in your thyroid but it proves that it's important to follow medical advice and in some cases no thyroid is better than a sick one, even if the trigger was autoimmune. Maybe that's why you felt so bad before the op on top of years of Graves. Hope you keep well and I'll be in touch after my op to discuss recovery.