T3 after completion thyroidectomy

[C_neck]

Hi, new member here. Sept 15 had partial thyroidectomy to remove cyst. They found papillary carcinoma so I had completion thyroidectomy 4 weeks ago. I'm seeing endo 1st app in 3 weeks. I've been taking Thybon 20 henning (T3) 3 times a day along with 6 calcichew and 2 calcichew with d3. Had bloods done a week ago as I thought I would be seeing endo this week. Results were PTH 1.37, FT4 4.8, TSH 1.52. The past week I've had headaches, a general fuzzy feeling in my head, now I have tingling in soles of my feet. In hospital they said to see my doc if I had the tingling but is there any point? Is it something to worry about? Are the headaches just part of this?

[galathea]

Hi,

Having an anesthetic for an operation wipes out all your b12. Tingling in feet could be linked to low b 12. Worth getting it checked, you need to be above 500 minimum.

Xx g

[cjrsquared]

It could also be a sign of low calcium if tingling gets worse take yourself to a and e you may need intravenous replacement. Very low calcium can cause cardiac arrhythmias best not to take any chances.

Good luck

[Clutter]

Welcome to the forum, C-neck.

Do you have the ranges (figures in brackets after results) for PTH? It's not possible to interpret the results without them. It's likely FT4 is below range as you are taking T3 only.

I'm assuming you are prescribed Liothyronine (T3) because you may be having follow up RAI to ablate any remnant thyroid cells. My endo wanted TSH suppressed <0.1 after thyCa so your dose may need increasing.

I think it's likely your parathyroids were bruised or lost during thyroidectomy which lowers calcium and PTH and you've been prescribed Calcichew to correct low calcium and vitamin D. Tingling and numbness in face, hands and feet can be due to low calcium. It is worth asking your GP to do a calcium blood test, vitamin D, B12 and folate before your endo appt. B12 deficiency can also cause tingling and numbness in hands and feet.

I think it's likely the headaches and fuzzy headed feeling may be due to low calcium and low PTH.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[C_neck]

Yes I'm getting radio iodine scan and ablation of any thyroid cells. I will have to stop taking t3 for a week before that.

The PTH range is 1.45 - 8.18 so I'm below that range.

My calcium a week ago was 2.46 (range 2.2 - 2.6).

Think I just thought I would take meds and that would be it!

I did have one gland removed - to investigate of cancer spread. Getting the histology result in 2 weeks so this is on my mind also!

[Clutter in reply to C_neck]

C-neck, click on the orange Reply tab under the post you are replying to and the member will be notified you have responded.

I'm not experienced with parathyroid dysfunction and as far as I'm aware the treatment for hypoparathyroidism is calcium and D3 to replace low calcium and low vitD. Balancing levels can be a bit of a juggling act.

I hope the cancer hasn't spread. You're lucky you only have to be off T3 for a week. Both times I had RAI I was off it for 2 weeks which is a bit challenging. You'll probably be switched to Levothyroxine which is once daily dosing after RAI.

_____________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[C_neck in reply to Clutter]

Thanks Clutter. I just read your history. I really had no idea of the complications of getting these meds right. My endo is meant to be very good so hopefully she looks at the whole picture. Is there anything I should be asking her?

My surgeon was very positive about the cancer so I am being positive too Xx

[Clutter in reply to C_neck]

C-Neck, I'm in my 4th year of remission now. The real problems began for me after I was switched from Liothyronine to Levothyroxine. Unfortunately I was told "Levothyroxine doesn't cause problems/symptoms like that..." I wish I had trusted my instincts and self medicated sooner. I've been fine on Levothyroine plus Liothyronine for a couple of years now, no thanks to my endo and MDT, although they finally prescribed T3.

I suggest you wait and see how you do on Levothyroxine before asking for T3 in addition. Most people do very well on Levothyroxine but it is well researched and proven that thyroidless patients do sometimes need the addition of Liothyronine to deliver good FT3 levels and to feel well. One thing thyCa patients don't suffer from is being undermedicated as TSH is usually suppressed <0.1.

I was not told by the hospital to take thyroid meds on an empty stomach so it may be useful for you to know they should be taken one hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from iron, calcium, vitamin D and oestrogen.

I can't think of anything specific you should ask the endo at this stage. The nuclear physicist will brief you on requirements for RAI which will include a low iodine diet two weeks prior.

You'll likely have a high dose of RAI which will mean 3-5 days hospital quarantine and a further 21 days travel and social restrictions and restrictions on contact with children and pregnant women. Take plenty of drinks as you'll be encouraged to drink copious amounts of fluids to flush your system. You'll also be asked to shower frequently for the same reason. Hospital towels will be provided. Take old jimjams, flip flops, hairbrush and toothbrush which you can dump in the radioactive bin otherwise you'll have to wait 6 months for them to be returned after decontamination. There was no restriction on phones, tablets, books etc.

_______________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[SilverAvocado in reply to Clutter]

Wow, Clutter, there are many things in your description that didn't happen during my RAI! I wasn't given access to a shower, and don't think I could have stood up to have one if I was. Although my memory is very bad - it sounds strange to have been in hospital for almost a week with no shower, doesn't it?

I also wasn't told to do the LID diet, and just took my pjs, slippers, teddy, etc home with me. All I was told was to put them through a washing machine. And I had to really insist even to be told that. Toothbrush never even occurred to me as being contaminated!

The only good news is that we were given unlimited chilled water in our own fridge.

[SilverAvocado in reply to SilverAvocado]

(it may be that I didn't brush my teeth the whole time... I was in full on zombie mode)

[Clutter in reply to SilverAvocado]

SilverAvocado, oh dear, I'm guilty of assuming what I experienced is standard. I had a room with ensuite shower, basin and toilet. I was encouraged to shower several times a day to flush the radioactive iodine. I didn't have a fridge though. I felt very well, tired because I'd been off T3 for 2 weeks, but otherwise fine.

I was the last patient in the block as it was due to be demolished and rebuilt as part of modernising the hospital. Just as well, there were 2 cockroaches that I had to deal with while I was there

[SilverAvocado]

C_neck, I think as far as cancer goes you have very little to worry about. The RAI treatment is very effective, but also when I went in for mine they didn't even speak about cancer. When I asked why I was told almost laughingly the chance it had spread was pretty much zero. And I had follicular cancer, which I believe is the next stage up in virulency, with a small papillary cancer next to it, which I found very alarming, but no clinician seemed bothered about.

The main things to be concerned about are whether your calcium and aftercare for the parathyroids is being dealt with correctly, and with your thyroxine dose being tuned. I also don't know much about parathyroids, only that you need to be vigilant as calcium issues can cause big problems, and require quick action.

For thyroxine, I was dangling around on inadequate doses for ages, because my consultant wasn't taking regular blood tests to tune them, and I didn't know how to interpret myself the blood tests I did see. You're well ahead of me by having found the site and learning how to read your own results.

Most of the discussion on this site is about people on doses that are too low. I've just got hold of my full medical records and seen that I was often put on very high doses during my 10 months of cancer treatment. So it's worth watching out for both. I think it also took many months to recover physically just from the operation and RAI. Looking back I don't think all of my weakness could be blamed on thyroxine dosage, or anything else measured by a blood test. I'm now just under 3 years past my first operation, and I've improved a lot in the last year even on doses I was previously less well on.

[SilverAvocado in reply to SilverAvocado]

The only other piece of general advice is not to trust too fully what doctors tell you, and double check where you can. Often they don't know a whole lot. Mine knows very very little about getting people back on their feet after the treatment. I was lucky that they did well on the operation and RAI (as far as I know), but some people can be less lucky there.

An example is that you really should have had freeT3 taken along with your TSH and freeT4. The fT4 is fairly meaningless if you're taking pure T3, whereas the fT3 test will tell you if you're taking enough T3. Doctors may insist this is not true, as they are often reluctant to do fT3 tests, and dose on TSH instead, which is a cruder measure.

I also have a hunch, but am not entirely sure , that 4 weeks is about the time your body will have used up the hormone your own thyroid had produced. So it's only from this point that you're going it alone with the medication. My own blood tests from the time look like that, and I've heard others say they have a bump about a month after.

[Orangelady1]

Hi, I feel for you, I had the exact same journey 5 years ago. Get the tingling checked out, it could be your calcium levels. Did you or are you going to have RAI treatment? X

[Pepekins]

I had papilliary cancer (found accidentally after a lump - non-cancerous) was removed from my neck 15 years go. Generally I have been well but various problems which I have had, I realise now, were probably down to Levothyroxine and the levels. I started on 150mcg which resulted in my losing significant amounts of bone from my hips. I too have had the internal vibrations and tremors, however I was taking too high doses of levo even for suppression. I would like to know if anyone can tell me, what the average amount of levo one would generally use, when things have stabalised afte the op and after thyroid removal. My endo wishes me to keep reducing. Recenty I have reduced by 25mcg and take 100 x 6 and 1 x 125. I get quite sleepy on this, but maybe I will adjust. Also when levo is reduced my cholesterol usually rises. As it is I have familial high cholesterol, so obviously don't want this to happen. It seems to be balancing act.!!!

[Machinations]

My tingling was poor calcium levels think called tetany. Upshot is calcium supplements sorted it. I have leave gap of several hours between them n thyroid med.