6 months post total thyroidectomy update

[Tamzin27]

Dear all,

It's now been six months since I've been living without my thyroid. I still don't regret having the surgery, but life has not been easy. Like many of you on here, I'm still struggling to get my bloods right. I've had 4 blood tests since surgery and have been playing with my Levothyroxine in the hope of reaching optimum health. To top it all, my calcium level is still low (lost one parathyroid from surgery) and I was also deficient in Vit D, which has now resolved after taking high dose of Vit D supplement. I have been battling with several side effects of some of the tablets, such as back ache, weight gain, joint ache, mood and hormonal changes. Despite my GP and endo putting me on 125mcg Levothyroxine, I have been taking 150mcg instead due to my symptoms. My endo refuses to prescribe T3 and I am not comfortable just yet with buying online. My GP who is quite old school is obviously not happy with me but I have made it clear that I will be trying all options despite her disapproval. My goal is to have my T3 and T4 in the higher levels of the normal range. Of course, I will be monitoring my bloods and heart etc. My weight has been the most difficult thing to deal with. No matter what I do, my clothes are getting tighter. My mood has been erratic and I have surprised my husband on a few occasions when I burst into tears over some silly things. Just for your information, I was never like that before surgery. Always happy and bubbly. I have been spending time reflecting on the past six months with my husband who has been my rock. Despite all the negatives that I have mentioned, I do not regret having my thyroid removed. I am no longer in pain which was debilitating. I haven't had my recurrent ear infections since and I wouldn't have been able to live with the not knowing and what ifs. I have been researching about supplements and is on the constant look out for optimum health. What is optimum health when you don't have a thyroid? I have been reflecting on that too. Will I ever reach optimum health? One thing we have concluded is that we have made no changes to our lifestyle since surgery. I have to remember that I have no thyroid and that I have to adjust my lifestyle to suit my needs. Accepting the changes my body is going through is exceptionally hard, so learning to accept these will be ongoing. My husband has also talked about learning to accept the mood and hormonal changes. I must have read every single blogs and you tube videos about the thyroid in the past 6 months. I read messages on healthunlocked daily and would like to say a massive thank you to all of you on here for the advices and supports you give. Voila! This is my 6 months post total thyroidectomy. #thyroidless #flyingwithoutwings

[shaws]

First of all I think it is disgraceful that your Endo wont prescribe some T3 to you as you're without a thyroid gland . They don't keep up to date with Research and one of our Advisers and his team have found that some hypothyroid patients do need T3 added to T4. Without a gland I think that should be a priority to prescribe T3 along with T4.

I have a gland and levo isn't for me at all. Other Research Teams have came to the same conclusion.

Six months is really no time at all, although you wont think so if you're not feeling good. It is not so much finding the correct dose or combination but how you yourself feels on a particular dose. Optimum means you feel well with no symptoms.

web.archive.org/web/2010103...

[Hidden]

I spent 8 years tinkering with the dose of levothyroxine after my total thyroidectomy and taking all sorts of things that were suggested to me, but none of them made the slightest difference. Eventually lost faith completely in the doctors who kept reassuring me there was nothing except the lousy levothyroxine.

Started taking NDT (brand Thyroid-S) from Thailand and immediately my health improved. I have kept doctor fully aware of what I am doing and keep complaining as loudly and as frequently as I can to get NDT (don't care which brand) supplied to me on NHS prescription. I feel certain I have already given them a basketful of trouble and shall continue to complain for as long as I am able to.

I feel sure that my body was damaged beyond repair by being deprived of all the extras that are contained within NDT and would advise nobody who is thyroidless to remain on levothyroxine if they continue to experience health problems or the same will happen to them.

[Tamzin27 in reply to Hidden]

Thank you Panda321. Glad you have found a way forward. I'm still too worried about buying NDT or T3 online. Still early days for me and I'm still trying different dose. If all fails, I'm sure I'll be self medicating. May I ask, do you still need a prescription from your doctor for NDT, if you are buying online?

[Hidden in reply to Tamzin27]

Anybody in UK can purchase NDT quite legally from internet without a prescription if it is for personal use. Unfortunately it is becoming more difficult to buy when places such as Amazon and Paypal no longer can be relied upon.

My ambition is to get an NHS prescription for NDT for life. Given time and enough complaints from me, I feel sure "they" will reluctantly agree to give it me.

NDT is simply "blacklisted" in UK. It is not prohibited.

[winjy in reply to Hidden]

What dose (grain) do you use? How long have you been on NDT? I felt better on NDT until I got hot, sweating, estrogen dominance symptoms..acid reflux, dehydration... I am in my 40's with no thyroid. 5.5 years on levo..caused a lot of health problem..ruined my body..

NDT also gave me liver and kidney pain later..so stopped it now..but if I can detox estrogen with progesterone and testosterone, I may start NDT again later.. But I heard some women on NDT had breast cancer.. maybe NDT is OK for women on post menopause..

Do you use other hormone such as progesterone or testosterone with NDT?

[Hidden in reply to winjy]

Currently on 3x Thiroyd since last Christmas. Before that on 2x Thyroid-S per day for about 2½ years. I have only managed to lose any weight since being on Thiroyd and shall be transferring back to Thyroid-S when the bottle is finished by which time I should have lost as much as I want. I get very hot, very quickly if I make any exertions which didn't happen so much on Thyroid-S. These things get very complicated and confusing and you just have to make it up as you go along.

I do not take any other medication. My thyroid issue is of the simplest form being only non-cancerous goitres. I therefore have none of the problems that seem to bedevil most women which is hardly surprising as I'm a man.

I suspect that cancer can play some part during thyroid health issues due to the havoc this can cause to the body's metabolism and defence systems so I reckon it is much safer to be on NDT than any synthetic products.

[winjy in reply to Hidden]

good to hear that you do not have problem with NDT. others have heat, sweat, belly fat issue..

[Musicmonkey]

I don't know much about your particular health challenges, not having a thyroid, but you need sufficient T3 to feel well. I thought those without a thyroid needed T3 directly?

I bought T3 online a year ago and made myself well. I used a trusted online source recommended by Forum members. Then bought additional supplies over the counter of a pharmacy in Kos (very cheaply!). Exactly the same packaging!

I am the most cautious, least reckless person you could come across, so I researched everything thoroughly first and then started on a 6.25mcg dose of T3, increasing weekly, while measuring my blood pressure, pulse, early am temperature and weight, keeping a careful record of any change in symptoms.

Almost a year on, my Endocrinologist has agreed to oversee me on T3 as I have shown that I am unharmed by it, and am reporting quite the opposite in terms of my own sense of wellbeing. I take 25mcg T3 in the morning and 50mcg T4 at night. He warns me of the risk of Atrial Fibrillation and Osteoporosis, but I am trading those (possibly overstated risks) against feeling alive and well, rather than half dead and ailing.

Good luck whatever you decide to do. I have learned that doctors don't always know best.