What follow up?

Hey Janey,

Why do you think you need an endo? What do you think the oncologist has done wrong so they can't monitor you? 

My followups are a bit of a chat, a feel of my neck, and blood tests, if they've not been done recently, to check TSH, T4, and TG. Ultrasounds are only for folks with half of their thyroid left in, unless you or the doc finds a lump.

The nurse at your GPs can do the blood tests, but I wouldn't recommend allowing the GP to alter your dose because they often don't understand or aren't aware of the suppression balancing act for cancer patients.

The problems you list there aren't necessarily thyroxine issues. Have you considered that some of these issues might be related to your neurological condition? Some of those sound like problems you said you had before with that.

Lass

Xx

Hi Lass, thanks a lot for getting back to me. That’s great I don’t need ultrasounds then. It’s lucky I did see an endo before the oncologist, as I was in thyrotoxicosis and oncologist didn’t tell me. My T4 was sky high and I got an emergency call from the endo, so that started to worry me about the oncologist doing the monitoring. I know endos also put people on say a weekday and the a weekend dose and I didn’t know if oncologists were up to speed on that. I also noticed oncologist only checked T4 and TSH and not T3. . Nothing else checked. I feel like I identify with Graves’ disease post op people more so now with all the Levo issues. Swapped one issue with another. I also told the oncologist I had palpitations and they dismissed it, when I was actually in thyrotoxicosis. I’m defo more likely to die of thyrotoxicosis than this cancer currently. It’s scary how it’s affected my breathing. My friends are also shocked at my weight loss. 

Pre op I was like who are these crazy people buying dried pigs’ thyroids from Thailand and I can now understand. The issues for me isn’t the cancer, which looks like all sorted but living without a thyroid. Having to wait an hour to eat in the morning is very annoying. I currently don’t feel myself until late afternoon, so wondering if that’s thyrotoxicosis or just permanent! I also can’t control my body temperature or sweat, almost passed out the other day. Again hoping due to high T4.

Im not sure if I do have a neurological condition now, as I’ve been told it could mostly be my thyroid. Still looking for answers. It’s early days I know and should feel somewhat better with lower T4, but I don’t think I’ll ever feel quite myself again post TT. 

Hi Janey

Would be great if you could update your profile so we have your background when replying to posts. I'm not so smart at remembering what everybody had done and when, but I think you're still relatively new to life without the thyroid and your old thyroid was pretty mucked up by Hashimotos.

They call us 'patients' and I'm sorry to say that part of that is because we have to BE patient. Thyroid hormones don't switch on and off like lightbulbs. Levels take time to stabilise - typically 6-8 weeks after each change. Some people are in a rush to be perfect on day one - or maybe day 14 post surgery. That doesn't work. I'm still tweaking my dose 8.5 years after surgery but I'm happy to say that at almost every level along the way I felt pretty darned 'normal' whether my level was too high or too low, it was still liveable.

GPs tend to only test T3 if the T4 is odd or if the doc has specifically put it on the phlebotemy request. More often than not they don't and more often than not it doesn't matter. If you've been googling American sites that get into all sorts of weird complexities on T-this and Reverse-T that and what have you, please stop - you're still so early in the game and you've not really even stabilised yet.

I'm probably typing this at exactly the same time as Lass and we're both going to tell you to (respectfully  but in CAPITALS) STEP AWAY FROM THE DESICCATED PIG THYROIDS. That's the crap that our grandmothers and great grandmothers took when nobody had figured out how to make clinically pure synthetic thyroid hormones. All the experts - that's the medical ones, not the google 'advocates' and hysterical thyroid disease folk - will tell you that anybody with thyroid cancer should NOT be talking that stuff because you just cannot get the dose finely controlled. 

Maybe you will find out that your case is in some way special but you're not going to know that for a good few months. I'm really sorry that you're feeling crappy but you need to give the medication and the doctors some time to get things sorted. 

Thyrotoxicosis is basically just being hyperthyroid, I believe the words are interchangeable. All thyroid cancer patients are kept at the top end of normal, and into the hyperactive range. Your problem is that your GP changed your dose from what your specialist put you on, so totally messed with expected results and your timeline of adjustment. Do you know what your T4 and TSH were on your last test?

Oncologists are totally up on how to prescribe thyroxine, more so than some endocrinologists because thyroid cancer is really quite rare, so they don't get a lot of experience with it. Unless they are working in an oncology department. 

Remember, it takes 6 - 8 weeks for a dose change to take effect. So when was it that you lowered your dose after the call? Stick a note in your diary for 8 weeks after that and arrange a blood test to be done to check.

As for T3, I don't think I've ever had that checked in the 6 years since diagnosis. There's no need and it's a waste of the NHS's money to test it unless indicated. 

As for people buying NDT online, I'm afraid I question their sanity. They are usually people who have Googled too much, not listened to their doctors, and not expressed their symptoms and feelings adequately to the medical folks they see. And by buying stuff online, they are seriously risking their health, and probably making themselves worse.

Weight loss can also be attributed to stress and anxiety, which it seems like you may have. Have you tried meditation or mindfulness exercises? Palpitations can also occur due to stress as well, and meditation can help those too. 

As you say, it's still early days. So setting in your mind that you're never going to feel yourself again is jumping the gun massively. As with all the tests, appointments, etc taking time and us needing patience - the same goes for tweaking medication. It takes time to get it right, and it can't be rushed due to the 6 - 8 week delay in the meds balancing out.

Hope that clears some things up for you!

Lass

Xx

Hi T4 was like 38 I think when too end of range was 22 I’d have to respectfully disagree with what you say about the people online. They are not well and desperate. Most have tried Levo along for years and are euthyroid on blood tests, I feel for their plight. In some other countries T3 and NDT more common. For me, cancer not really an issue, life sans thyroid very much more of an issue. 

Im not losing weight due to stress. My T4 is sky high. 

But anyone with a thyroid issue or been treated for Graves is on Levo. So a thyroid specialist endo does have loads of experience. 

I just wanted a bit of help here. I’m hurt by what you said about the sanity of desperately ill people who genuinely feel better on NDT, which historically was prescribed for years.. 

Hey,

Yeh, that's insane, and exactly why GPs shouldn't get involved with our medication. Barbara and I went into that in more detail in previous posts, so I won't say more on it.

Your T4 will be lowering each day you take the lower dose, so as we said, get a date in your diary to be retested and see how it is then.

A thyroid specialist endo is in the same class as one working in an oncology ward. The point was that it can't just be any old endo that can be seen.

Historically they prescribed heroin, opium, and all sorts of things they don't anymore. Either because they've found something better, or discovered it wasn't medically sound. In this case, the UK have both found something better and found that NDT doesn't suppress the TSH sufficiently. So for a thyroid cancer patient to take NDT, they are playing Russian roulette twofold. Once because it's risking their health by not suppressing correctly, secondly because buying medication online doesn't mean that what you get is what you ordered. There is no telling what might be in those capsules that arrive in the post.

That's the reason for my opinion on folks buying stuff online to take, rather than going to the Dr and getting themselves sorted out.

Both Barbara and I have again given you lots of information and tips and suggestions, which is all the help we can give in an online capacity I'm afraid. Hopefully there's something in our posts that helps you on what looks to be a long journey to getting your meds balanced.

Lass

Xx

T4 of 38 is very high.

I did a TSH and T4 test by asking my GP as I wanted to know if my dose was right since my TT.

My T4 was 25, with TSH of <0.05. This was 6 months after my TT.

I had started getting hyper symptoms of eye twitches, muscle spasms and weight loss,

The range of T4 according to the labs used by Leeds and Bradford NHS hospitals is 11-20 for T4.

I immediately rang up my cancer nurse who spoke to the oncologist and reduced ny dose from 125 mcg to 100mcg

I will now wait 8 weeks and see how it goes.

From a followup perspective-

I am due a endo appointment in June probably  then Ultrasound of Neck and Simulated Tg tests in October

The usual targets for PTC are-  TSH <0.1,  Free T4 in normal range and Undetectable Tg(Thyroglobulin) for a couple of years after which they can be relaxed