Partial thyroidectomy: Hello I am new but... - Thyroid UK

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Partial thyroidectomy

steph26 profile image
9 Replies

Hello

I am new but wondered if someone can help my. I had a right thyroid lobectomy in January for 2 nodules. One was benign and one was a microcarcinoma. No treatment was needed thankfully due to it been caught early. I was told the remaining thyroid would compensate. Since my op, I have gained just over a stone which is a lot for me as I am quite active and no matter how hard I work out I can’t shift it. I seem to be tired all the time with lots of aches and pains. I have really dry skin on my feet and bad constipation. I also have memory and concentration lapses. I have been back to my gp twice and had my bloods done. My tsh is currently 3.8 and my free T4 is 13.3. ( was 4.02 and 13.1 6 weeks ago). My GP is saying my levels are within range and there is nothing wrong with my thyroid. But I feel something is just not right. She said I seemed down and should try anti-depressants but I refused, telling her that I am pissed off but not depressed. She has done bloods again to check my estrogen to see if that is my problem so waiting for those results. Do you think she is correct that my thyroid is fine? Does anyone have any advice for me?

Thanks

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9 Replies
Nanaedake profile image
Nanaedake

I think your TSH is a little high although it's still in range. I didn't feel well when mine went higher than 3.0. But there could be various reasons for feeling unwell

Did you lose parathyroid glands? I think we need our vitamin D to be at least mid lab range to absorb enough calcium when we've had partial thyroidectomy. Also a calcium rich diet will help musculoskeletal health.

Antidepressants can cause osteoporosis which we may be at risk of if going into menopause with low vitamin D and calcium intake. Low calcium will not necessarily show on blood because your body robs bones of calcium to keep bloods balances as heart and brain rely on adequate supply.

Don't expect your doctor to think of this, none of mine did for 7 years. I started getting better by taking vitamin D3 and other supplements as they did not help me.

Ask doctor to test vitamin D, B12, folate and ferritin. Tell doctor that NICE guidelines say that anti-d's can be a cause of osteoporosis so it's not the answer for you.

When you have test results then post them here

Make sure you get a printout that includes the lab ranges as we need them to interpret results.

steph26 profile image
steph26 in reply to Nanaedake

Thanks for your reply. I don't think any parathyroid glands were taken. I don't think the blood levels you mentioned are part of the normal blood tests here but will ask. Trouble is I don't really know how to figure out the blood results anyway 😏 Dont know what vit d shows as on results but my calcium is at 2.2. As for anti d's, I told her I won't take them as they are not needed. I felt robbed off if I'm honest. Thanks again for taking the time to reply. Much appreciated. 😁

steph26 profile image
steph26

Thanks. 👍

Nanaedake profile image
Nanaedake

Check the pathologyyreport to find out about parathyroid glands. You may not have been informed.

If you post vitamins blood test results then people here will help you interpret them.

SilverAvocado profile image
SilverAvocado

I feel very sorry for you, as this is a bad situation to be in :( I've had my whole thyroid removed, so have been through some of this, too.

You haven't included the ranges, but its clear those results are not very good. Unfortunately, doctors can be very restrictive about waiting till the TSH reaches a very high level (the higher it is the less thyroid hormone you have - its your body's signal to make your thyroid produce more).

They say that most people can manage fine on half a thyroid, but its clear that some people can't :( I had half for a while, and my TSH shot up, so in a way I was lucky, as doctors will treat that.

My first question would be, are you still having ongoing follow up in the department that ordered your operation? They should be more sympathetic than your GP, who is just looking at one number and ignoring the fact you've had half of your gland removed!

You may also be able to make the argument that because you've had cancer you should have your TSH suppressed (a very low TSH makes the cancer less likely to return). If you're stuck with your GP, maybe you can make a fuss about the cancer and try to get a referral to an endocrinologist or the department you saw with the cancer.

Another strategy is to visit all the GPs in your practice, go in every week making a fuss, and generally be persistent. Keep repeating that you have symptoms, you've had cancer, and you've only got half a thyroid. Although the GPs can be restrictive, its kind of a judgement call for them on whether all that adds up to you needing treatment or a referral.

If all that fails, the final thing you can do is self medicate with thyroid hormone. Many on this forum do it, myself included. Unfortunately doctors will often keep people in your position sick for a long time :(

steph26 profile image
steph26 in reply to SilverAvocado

Thanks so much for your reply. 😊

My levels are 3.8 and my free T4 is 13.3. ( was 4.02 and 13.1 6 weeks ago )

Ranges are tsh .27 - 4.2

Free T4 10.5 - 22

I have been back to my GP ( there is only one in my practice) 4 times now (€60 each time) and she will not help whilst my numbers are within range regardless of my symptoms. I will see if I can go back to my consultant but again it's all money and unfortunately I don't have a lot. When you say self medicate, does that mean i can buy what I need as I reckon that is easier than fighting a losing battle with my doc. Thanks again for you support and helpful answer.

SilverAvocado profile image
SilverAvocado in reply to steph26

You're very welcome :)

Usually a healthy person would have freeT4 in the middle of the range, and TSH around 0.7-2. Once TSH is about 2.5 or more it's higher than any healthy person would have. But unfortunately the ranges are quite a bit wider than that :(

Knowing you have half a thyroid should mean they're willing to take it a bit more seriously, but GPs often ignore all that, and just wait for the TSH to get high.

Your TSH seems to be bouncing around that number. Did you get those tests done first thing in the morning, before eating? It will be a little bit higher then, so if all you need to hit is 4.2 you may get that!

Yes, many of us buy our own from overseas. I guess you're not in the UK, so you may find it harder to get a good website. Some European countries sell thyroid hormone over the counter, so if you're close by you may be able to go on a journey and stock up.

SilverAvocado profile image
SilverAvocado in reply to SilverAvocado

Before I started self medicating, I hung around the forum for several months, reading a lot of posts. Be learning how to read the blood tests. Its important to be careful and go slowly and systematically. Otherwise you can end up floundering around trying everything at once.

steph26 profile image
steph26

Thanks Silver. I am in Ireland so no NHS here. Also they don't test for T3 here. I rang to see if I could have test privately but the hospital will only do that if my GP refers me and she won't. My bloods are always done first thing and fasting. Doc is now saying it is my age and hormones that is causing joint and muscle pain, fatigue and weight gain so once I get the results from that test, (which I think will probably be normal) I think I might have to think about changing GP.

I will keep a close eye here for now and not make any decisions until I learn more. Thanks again. 🙂

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