Geri is the thyroid cancer specialist nurse on the Macmillan Support Line.
She checks this group and responds to medical or factual questions where members could benefit from an expert answer. You can also post questions specifically for her - she'll aim to reply within three working days.
I keep coming on here then not coming back - am guessing the way everyone keeps telling me I need counselling to 'accept' whats happened to me that I might very well be avoiding the issue. I'm trying to obtain normality a bit too hard!
Anyway I'm utterly fed up which is what brings me here again tonight. First op in April, second in May then 2 weeks later RAI. I started Levothyroxine after the second op. This has been adjusted twice and I'm now on 150mgs a day. Latest blood test came back two weeks ago and consultant called me to tell me that its now 'normal'. But I feel awful.
Spoke to consultant about this and he sent me to my GP for full check up. Bloods all back normal and she thinks I'm just overdoing it (and suggested counselling which now makes me want to scream!) and thinks I need to cut my working hours. She reckons RAI is very nasty and its going to take a long time for my body to recover from two surgeries and RAI. However I haven't really read anyone here say that they're still feeling awful after their thyroxine levels have been sorted. I was under the impression that once my levels were sorted out, I'd feel 'normal' again and I don't.
The symptoms are these: Exhaustion - some days are better than others but bad days I feel like I can barely stand up; Lack of concentration; Sore legs and arms; Hair loss ; Dry skin; Intermittant sore throat; Tiredness/insomnia all in one; Split nails and the list goes on
The last few days my joints hurt, my throat is very sore, I have developed mouth ulcers and styes on both eyes. I'm exhausted and not having very many good days. I have an appt with consultant in 2 weeks and don't want to be fobbed off again but at the same time, if I am anxious/depressed/in denial (though I don't feel it), then I really need to deal with it in order to get back to normal. I didn't think vanity was one of my faults but my dry skin and broken and splitting nails are really getting me down.
Does anyone else feel like this? Any suggestions on what I can do to feel better?
I had all those symptoms that you described after RAI and during the thyroxine level adjustments...in fact am still adjusting my levels as my blood is saying it's too high but I still feel tired with lack of concentration. I do think it takes quite a long time for our body to recover from the ops and RAI, and for thyroxine level to build up (my Onc said that it would take at least 6 weeks for new dosage to work/build up). I had really really dry skin but since I started using E45, it has got so much better. So I'm buying E45 in bulk from Amazon and use it every day (sometimes twice) and can't believe the improvement for my skin. Did you try some physical exercise? I started using cross-trainers after RAI and built up to running (from jogging one mile a day and gradually building up to longer). It's interesting that I feel less tired after running. The only days that I felt like 'normal' were when I was on 175mg a day...but my FT4 was way above normal so my Onc reduced my dose, which put me back to square one. So I'm now concentrating on running and taking it easy (work was a bit stressful in the last couple of months). Still not feeling 100% normal but I'm getting used to that feeling now. Have to go hypo later this year for stimulated blood test...so it will be all over again!
All the best
Hello Crosby. Sounds familiar the symptons & frustration you're going through. I had TT/RAI/ T4 adjustment etc .. completed 15 months ago and still exhaustion and other vex symptons come & go.
The likelihood is that life is going to be compromised to some degree from now on, but we can improve situation with sensible monitoring of T3/T4 and a awareness of diet/fitness and relaxation. TC got me when I was 48 so on one level it's not so great(older) but on another I'm more accepting of the limitations it causes.
RAI is quite a heavy treatment, and of course it hangs over all of us for life. Kazzy just been back in for another dose.
I would just try to go with the ups & downs of the new normal. All best~ Oliver.
Good advice from Forest and Oliver, so just adding my little bit. During my experience I have suffered 2 specific 'down' times. The first came after RAI and when i looked back it felt like I'd tried to stay strong from the point of diagnosis to RAI so I'd done what i needed to do and could finally let my guard down a bit as there was no more i could do. The second time was after i'd been told my treatment was successful believe it or not. I whooped with happiness and then 'Well where do i go from here'. I had a short course of counselling which was brilliant for me. I had this at my local cancer centre which also offers subsidised therapies and i can recommend them.
Do you have your 'numbers' from the blood tests? It's very easy to say 'normal' but not be in the right place. I would suggest to ask each time for the figures and start to track them yourself. As long as you don't feel normal, keep getting retested.
Up to now I've done pretty well on pretty much any medication. I was dopey on the lower levels but blood tested like crazy to get the levels almost perfect before having to switch to T3 in preparation for my iodine WBS in a few weeks. However, I'm telling myself I know pretty much where to aim when I go back on T4
I suspect some people are much more susceptible to changes in the medication than I am so I don't think I'm particularly typical.
As for the counselling - if you don't want it, don't have it. Sounds like they just fob you off with that as if it's all your mental fault you don't feel well. But you can come here to Mac any time - even when you feel well and don't have a problem you're always very welcome and someone here will understand how you feel. And none of us will make you lie on a couch and then ask you (in a bad Austrian accent) "Tell me about your mother"
I soo know and agree with what you are saying. All the same symptoms you mentioned that were supposed to 'go away' as soon as your blood tests have come back 'normal' are still there, but I'm being fobbed off with the fact that I'm young and unknowing of my actions. Honsestly you take the hard step of going to them (doctors) and you come back feeling just the same or worse sometimes, and nothing seems to be changing. I say 'taking the hard step of going to the doctors' because I know what I'm going to expect, and i say coming back feeling worse sometimes because I feel like such an idiot being told that I don't understand myself and my body, and for going there in the first place.
I don't feel that I'm being taken seriously unless I scream and shout about something, but I find it hard to be that kind of person with regards to this especially. I'm still waiting for that feeling of normaility that I was promised and believed but I'm not so sure about it now.
Hope you feel better soon tho and can find a solution. :)
Sorry to hear your suffering , but if its any consolation, your not alone.
The RAI is a massive hit to the system and with the surgery (which you'll have been under for 7 hours in total) you'll take a while to return to normal energy levels. As you hav'nt a thyroid anymore, this compounds it further. My Oncologist (the good one ) did say major surgery take a year to recover from. Its a long road, so just hang in there. I would try to look at thyroxine levels and if needs be, change GP. I think its Jenny on here who changed over from T4 to T3 and even though shes on a lower dosage, it seems to suit her better .Im on T3 for the next few months, and I find it manageable if Im not doing too much. If your busy ,you find it 'runs' out quickly and you feel washed up . but on the up side, you do find it puts a spring in your step just after youve taken it.
Like I said, keep your chin up, your out of the forest and its now a case of adjusting to life without your 'accelerator pedal'
thyroid_manThe RAI is a massive hit to the system and with the surgery (which you'll have been under for 7 hours in total) you'll take a while to return to normal energy levels.
Blimey Dean, is that how long you were under, I was only under 3.5 hours. Did you have a neck dissection?
Crosby, re reading your post and the timescales etc i think you are just experiencing a response to everything that has happened and that you really will pick up again.
Kazzyx2Blimey Dean, is that how long you were under, I was only under 3.5 hours. Did you have a neck dissection?
Ha ha, no Kazzy .It was two ops @ 3.5 hours each :)
About 1.5 to 2 hours for each of my ops (I think). Not easy to keep track of time when you're knocked out.
Hi Crosby and Mxxxxx,
I think too many of those in the medical profession rely too heavily on blood tests and 'normal' ranges and forget to listen to what the patient is actually feeling/expressing. It's too easy for them to dismiss your symptoms as psychological when they don't fit the norm. I think they were about ready to section me when I kept insisting that T4 wasn't working. I kept thinking 'how can they think this is in any way normal?'. I was asked if I was leading too much of a busy, modern life, when actually it had become a real effort to leave the house.
I believe that we all know our own bodies pretty well, so stick to your guns. If you don't feel well then something isn't right. I was fobbed off quite a few times over 4 months and close to collapse before I got some T3 and they were convinced that I would feel no better on T3 than I had on T4. The Endo was ready to class me as having chronic fatigue syndrome and I felt that I was being written off, when, in fact, I was pretty sure that the solution was simple.
T3 works for me, but if the blood tests were to be believed then I was fine on T4. The fact that I had lost my appetite, couldn't get my breath, couldn't get my words out, had a tremor, was weak and shaky, had numbness in my limbs was depressed, blah, blah, blah...it was an endless list... didn't seem to matter.
Keep pestering, even if you are too tired to be bothered. With a bit of luck someone will start to listen - in my case it was my GP.
Best of luck.
Ha ha! not quite Kazzy. It was 3.5 hours per op so two ops = 7 hours. I know it varies, but all the same, its major trauma :(
j4solwayI think too many of those in the medical profession rely too heavily on blood tests and 'normal' ranges and forget to listen to what the patient is actually feeling/expressing.
Great point Jenny.
As I put in another post, Im a fairly big guy, over 6ft and 16.5 stone. The onc was prescribing my T3 0na 60mg dosage. I queried this and his response was something like '....well its a standard dosage (add your own sense of entitlement/arrogance)'
so I asked 'if I was an 60 yeatr old granny and weighed 7 stone it would be the same?' .......he then wrote me out a prescription for 80 mg there and then lol
A great quote I read the other day on Facebook:
"Before you diagnose yourself with depression or low self-esteem, first make sure that you are not, in fact, simply surrounded by assholes." - William Gibson
sorry if I'm changing the subject a little but it's along the lines of 'normality'. How long does it take for you to have TG blood test result? I was told that it usually takes 2 wks but in my experience so far, it's at least 3wks (with a lot of chasing) or easily 4 wks. Is this normal? Thanks
It depends on where you are. My first one done the day I went for RAI was about 3-4 weeks. My second (taken 6 weeks post RAI) took a massive NINE weeks but I suspect the results got lost in the inability of the NHS and private doctors to talk to each other.
I had a test about 4 weeks ago and just called the GP surgery and apparently it's back - but they can't give me the numbers until the doctor has had a look.
Northampton don't test 'in county' so all our blood tests for Tg get sent out of county - my surgeon says he thinks they go to China, they take so long. The Hospital's path lab guidelines say 14 days - but I'd be surprised if they were ever that fast.
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?