I had half my Thyroid removed in Nov 2016 due to suspected cancer ( was found precancerous) and to be honest life has been miserable since. I've gained almost 2 stone despite no change in diet etc, I'm tired all the time and finding I have zero enthusiasm for life. I now have a lump on my remaining thyroid which I'm being referred back to hospital for as GP thinks I should have remaining removed. I'm on no meds as my TSH hasn't reached the magic number 5 although it's increased steadily up to just under 4.
I'm wondering what to expect if they take it all out. I know they will have to put me on meds but am I going to gain more weight and get more fatigued? I'm approaching 34 and feel like my active life is well and truly over ☹
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Adele-84
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Welome to our forum and members will soon be along with good suggestions.
I am assuming that despite having half a thyroid gland that you were not given levothyroxine? How do they expect half a thyroid gland to produce an amount of thyroid hormones a healthy gland would produce.
They should have treated you more kindly by giving you a T4/T3 combination although they've withdrawn T3 from being prescribed due to its cost but surely a person who has half a thyroid will struggle. If your other half of thyroid gland is removed I would insist on T3 (you can source your own if they refuste).
You have clinical symptoms of hypothyroidism, ie. weight gain due to your metabolism being slowed right down. I should think you also have a low pulse and temp as well.
Most on this forum have increased their thyroid medications themselves by sourcing some privately. (No details are permitted on the forum but info can be given by Private Messages). A private message is sent by clicking on a person's name which takes you into a Message link which remains private.
The majority of members on the forum are because the NHS or other Endocrinologists elsewhere in the world have not got the knowledge in which to 'heal' the patients disabling clinical symptoms.
Through 'doing it themselves' many have recovered and are leading healthy lifes.
It might be worth getting a full test of your thyroid including tsh, t4 and t3 if you haven't already done so as might give a clearer picture of what's going on. You can pay for these yourself if docs are not doing this
Thank you I get the bloods done every 12 weeks on medichecks and take to docs. Doesn't make any difference though as they won't treat until TSH is 5 regardless of my T3 / T4 😕
It show your thyroid is struggling so could have done with support with meds but I can't really help you with the difference between partial and total as not much experience of it and I suppose it depends on what is determined in your referral. You will be relying on them more to treat you adequately as won't have thyroid function left so I would learn as much as you can so you can discuss everything with them at a more knowledgable level and are happy with your decisions and outcomes.
Also worth getting vitamin levels tested as normally suggested on here
If it is at all possible, try to keep at least some active thyroid tissue. Then, you will need less medication and what's more be able to control therapy a lot better. This is because the thyroid remnant works very hard to try to keep you as well as possible by making the body convert whatever T4 the remnant can make to FT3 the active hormone. Combine this with proper therapy say T4 and you can control the situation more easily..
My surgeon told me that my levels would be easier to regulate if I had no thyroid tissue. Of course let me say that we cannot believe everything medical professionals tell us. But I am trying to follow the logic of it being easier to control with some thyroid tissue left.
When you say that they thyroid remnant makes the body convert whatever T4 it can make to fT3, I am kind of lost unless you are reasoning that TSH will be a little higher with less exogenous meds, so better conversion?
I am not challenging it, just not following it. Thanks!
It is because if you have some active tissue left, this continues the cross-control between the thyroid putting out T4 (and a little T3) and the tissues converting T4 to T3. Without any thyroid that crosstalk is lost and the situation becomes much more unstable. The only control is through body conversion of T4 by mouth and this is not so easily achieved.
If my experience helps at all, my thyroid has not been removed but my thyroid started going in my early teens and 25 years later, I stopped producing any thyroid hormones in the past few years so I suppose I've had experience with a slither of function left and none. Since then, it definitely feels different and not so good/natural and a lack of control or balance somewhere or a sense of fake hormones that are not quite right - can't really explain it. Read up as much as you can maybe so you're happy with whatever decision you make
For my surgery I was told it was either a whole lobe or nothing. No concept of taking out only part of it.
Although I went on to have RAI, so not a shred of thyroid remains. I think mine even tried to grow back, but a scanning dose of RAI was enough to destroy it in the end - very painful.
The approach my treatment has followed is that with not even a cell of thyroid tissue in the body, a thyroglobulin blood test will reveal if any new differentiated cancer is growing.
Reliance on the thyroglobulin test as a cancer marker is antithetical to preserving any thyroid tissue
The morning after surgery you will be given Levothyroxine, probably around 125mcg. You are likely to feel a lot better after the 7-10 days it will take for Levothyroxine to be absorbed than you do now with TSH high in range.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...
For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.
It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.
You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.
Once you are optimally dosed on Levothyroxine you should feel better and stop gaining weight. It will probably take some time to shed the weight you've already gained though.
Ask your GP to check ferritin, vitamin D, B12 and folate. They're often low/deficient in thyroid patients and good levels will make you feel better and will give better surgical outcomes.
In all seriousness, that factored into my decision. I had a choice between a partial thyroidectomy and a total thyroidectomy for suspected cancer. I was so sick of them saying my levels were 'normal' that I was okay with the total because I knew I would be put on thyroid hormone by default. I didn't realize what a journey it would be, but it was the right choice for me.
I had a partial thyroidectomy for suspected cancer followed by full a couple of months later when the cancer was confirmed. I was put on 150mcg the day after surgery. It took a couple of weeks to feel normal again but I think that was recovering from the surgery. I can honestly say I feel great now as long as I take my meds every day, I’ve had no problems at all since the surgery 3 years ago.
I had a partial, followed a few months later by the full thyroidectomy. I also felt terrible with only half a thyroid. But my levels where plummeting and TSH was pretty high. It was 6 or 8 a week or two later (when I still would have had quite a bit of stores hormone from before the operation). I say this partly to comfort you, because I did badly on Levothyroxine. It's now 5 years later and I'm self medicating, and very hopeful my ideal dose is one or two adjustments away
But as you've never tried Levo before there is a good chance it will work well for you. It's very common not to manage on half a thyroid, and your blood tests show very clearly that you need medication.
There's also a good chance your GP knows nothing about treating hypothyroid. So they may be just as horrible about dosing you once you're on Levo. You need to educate yourself on how to dose it, and shop around for a doctor who won't be terrible and keep you undermedicated and sick.
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