Dear all - I've been around for a while but I'm a reader rather than a poster (sorry). I was diagnosed with Folloicular Thyroid Cancer 3 years ago and had a TT and RAI.
Prior to this I had felt unwell for many years following the birth of my son but in the UK I was always told my thryoid was normal. I live in France and the cancer was found almost by mistake on a routine visit to the GP.
I had a TT sept 2010 and I started on T3 only before the RAI. Post RAI I took 225 gm of levo... I felt great on T3 only but my whole world was upside down so it wasn't any kind of scientific test. I felt very hyper on 225 gms and my bloods reflected this so they have been slowly reducing the dose.
I now take 150gm every day except on a sunday when I take 75gm... and I feel like my health has been a slow slide for 18 month as my dose gets lower and lower.
My endo only sees the suppressed TSH and says my hypo-symptoms are actually hyper-symptoms and he reduces my dose each time I see him.
After my last visit I took things into my own hands and upped my dose during the summer to 162gm and only reduced it back 4 weeks ago for my blood test... my T3 is low and I do wonder if I had stayed on the 150/75 combo all summer maybe it would have dropped out of range?
I am so terrified that when I go next week he will lower the dose again... I feel like I'm living half a life. Tiredness and weight gain are my worst enemies but dry skin, memory loss, sinus problems, walking in treacle, sleep problems, aches and pains are also present, swollen hands and ankles, reflux... what can I do?
Here are some blood results to give you a flavour of my decline... I feel like my TSH is out of sync with my T3/T4... regardless of the suppression I still feel totally pants and hypo? Is there anyway I can convince him? I sometimes feel like this is all in my head and even typing this brings me to the verge of tears... any help would be very welcome
thank you
My ranges are :
TSH - 0.27 - 4.2
T4 - 12 – 22
T3 - 3.1 - 6.8
Aug-10 (pre op) - TSH 4.65 - T4 - 11.2 - T3 4.9
Oct-10 (225 gm) TSH 0.01 - T4 32.4 T3 - 5.5
Apr-11 (175 gm) TSH 0.005 - T4 19.9 - T3 5.1
Oct-11 (162.5) TSH 0.01 - T4 22.8 - T3 4.5
Dec-12 (150) TSH 0.01 - T4 19.1 - T3 4.1
Nov-12 (150/75) TSH 0.02 - T3 3.5 (T4 not asked for)
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Brass
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I'm sorry you are having such a rough time. Thyroid treatment is definitely not as easy as the doctors like us to think!
Sometimes levothyroxine on its own isn't enough for some people to feel well. I feel very unwell on levothyroxine and only feel well when I am on a high enough dose of T3.
There are a few things to try before switching to T3 though. Certain vitamin and mineral deficiencies can present as symptoms of hypothyroidism and I believe that is at least partly due to the fact that they are involved in the metabolic process. The main ones to look at are serum iron, ferritin (stored iron), folate, vitamin B12 and vitamin D. If you manage to convince your doctor to test these (and he should as he has told you it's not your thyroid - it must be something else!) the reference ranges for some of these are far too low. Serum iron really needs to be well within the range (not low-normal) and ferritin seems to be best at around 70-90 at least. Many people feel best with folate levels above 10 and vitamin B12 above 500 (some say it should be much higher than even this). If you are already taking B vitamins your folate and B12 might be above range and this is ok. It is best to stop taking these vitamins a while before getting these tested.
If, after getting all of these to optimum levels, you are still not feeling well you may find you need T3. There are other vitamins and minerals that you might want to look at too. I know zinc, magnesium, copper and others are important too. You might find this page on the main Thyroid UK website interesting.
I hope you find the answers soon. It can be a very long road to recovery sometimes but hopefully the above will help.
Incidentally, it seems (according to some doctors) that TSH can be affected by vitamin and mineral deficiencies and also stress and hormone imbalances. Getting these on the right track may help to raise your TSH a little. This, along with good iron and b vitamin levels, will also help your body to convert T4 to T3.
Wishing you all the best. Please do ask if you have further questions.
Hi there, as Caroline suggests it is very important that you focus on absorbing the micronutrients all the above along with selenium and magnesium. With papillary thyroid cancer it is important for the TSH levels to be well suppressed and we should be kept slightly 'metabolically hyper" in order to suppress any residual cancer cells, this is done by the active T3, I am presuming this is the same for follicular cancer....but please check.... I ended up in a huge mess as the endocrinologists did not tackle my chronically low ferritin and iron saturation along with B12 etc....also lowering my medication even without looking at FT3...it was not pieced together...I ended up with adrenal issues and toxicosis...this has taken along time to resolve....I was treated by a bunch of muppets. Do not allow them to lower your medication without evidence and full ranges of B12, ferritin, full iron panel, magnesium, folates and vit D ( you actually need to be well up in the ranges for hormone conversion as Caroline has stated) and they should at least check your adrenals although the short synacthen will only look at extremes. Also take your temperature before you get out of bed, for a number of days before your appointment...please tell him what the results are....You need to work at the nutrients and most of all look after your adrenals....I hope you start to feel better soon, remember you are not alone...take care
Ladies - thank you for the replies and it helps a lot - I am just so grateful for the understanding. My own GP is pretty good at getting me tested for what I ask for so I will go along with a list for him on monday and ask nicely and keep my fingers crossed. I see the endo on wednesday.
I did lose 2 calcium glands during my TT and the whole front group of lymph nodes (sorry I should have said this before).
The last time my calcium was tested was december 12 - it was 84 (85 - 105) and my b12 was tested in May 11 it was 211 (191 – 663). I dont think the others have been tested. I dont take any other supplements or drugs.
The other thing is that I'm 50 and the RAI pushed me into menopause - my last period was the day I took the RAI dose.
Sorre, yes you're correct, like you my TSH has to stay suppressed... my endo says all my symptoms are down to the suppression/hyper but I dont have one single hyper symptom... just a bunch of hypo ones and I have always questioned if there was some kind of conversion issue... it all seems so out of synch. Oddly enough doing it all in French is the easy part... getting him to listen is the hard bit
I know I should be grateful... I have a friend who says "you're alive... and you dont have cancer" and I know I should be grateful for that... I am grateful for that. But goodness I just want to feel like the world doesn't revolve around treacle.
If my doc agrees to the blood test I'll go on Tuesday and have the results on Wednesday before I go to see the endo... I just hope there is something obviously wrong.
Your B12 is much too low! If your doctor will agree to do it, it would probably be helpful to get your intrinsic factor and parietal cell antibodies checked to see if you have pernicious anaemia. If you do have it, you will need B12 injections. I expect this is only part of the puzzle, but I felt much better on getting my B12 up.
You are very welcome...it is very tough sometimes when you are so isolated.
Just noticed that your serum B 12 of 211 is very low indeed. It should be well over 500. In Japan people are treated with results under 500. If you are deficient in this it is likely that you are deficient in other nutrients... try supplementing after the blood tests have been taken next week in all the minerals mentioned above ...Yes ...calcium is low too...are you supplementing with alphacalcidol? I lost 3 parathyroids so also have had to supplement...
The 'Cancer' bit is a tricky one and is very isolating it can leave you with so many mixed feelings and particularly with thyroid cancer as you have to deal with all the emotional and physical trauma. Then comes the very long battle with being on 'over'...optimal thyroid replacement.... and the pitfalls in between...Great to hear that you have a good GP.....Your friend has little understanding of living without a thyroid and cancer, I am sure she means well but those comments are not helpful, let them brush off you. as I am sure he/she has good intentions...you are welcome to PM me at anytime xx
I thought that people who had a TT had to have a suppressed TSH. This is an extract from a Pulse Online article by Dr Toft (questions/answers).
7 How low should we aim to suppress TSH levels following thyroid carcinoma? And are these patients at increased risk of bone loss?
The treatment for papillary and follicular carcinoma of thyroid is usually total thyroidectomy followed by ablative iodine-131 and long-term treatment with levothyroxine in a dose high enough to suppress serum TSH concentrations.
Higher doses of levothyroxine are used – compared with those in patients with spontaneous primary hypothyroidism – because the growth of differentiated thyroid carcinoma is TSH-dependent.
In the past it has been customary to make sure that serum TSH concentrations are undetectable by using doses of levothyroxine of 125-200µg or more daily, depending upon the patient’s weight.
There is no good evidence that a suppressed serum TSH concentration – in the presence of an unequivocally normal serum total tri-iodothyronine – is a risk factor for atrial fibrillation or osteoporosis.
But the clinical consensus is that serum TSH concentrations in such patients should be low but detectable at 0.1-0.2mU/l.
This is another extract. Go to question dated January 2, 2002:-
Many patients know the presumption is false; they know it’s false because they, like you, become and remain ill when their doctors adjust their thyroid hormone dose according to the TSH level. I know the presumption is false for three reasons: (1) I've studied the research literature which shows that the presumption hasn't been established. (2) I've objectively assessed the tissue metabolic status of patients whose thyroid hormone doses were regulated by TSH levels and found the tissues understimulated. And (3), I've seen hundreds of such patients—formerly kept ill by TSH-adjusted thyroid hormone doses—fully recover their health when my cotreating doctors and I treated them in violation of the guidelines of the conventional endocrinology specialty.
Dear all - thank you so very much for all the replies. It's a great help to know that there are folks who understand how you feel!
Sorrel89 - what you say is so true... I think folks think that you're cured and all is well and things should be just as they were before I wish I had a pound for everytime someone told me it's my age... grrr!
Anyway - I went to my doctors this morning with my list for a blood test. I explained that I had been a bit naughty in that I upped my thyroxine dose. I nearly fell off my chair when he said... no worries, you know what makes you feel best!
He said I'm only interested in your TSH staying supressed... I dont really care too much about your T4 and T3 as how you feel is more important! He does check my blood pressure and listen to my heart every 2 months and he says as long as I stay healthy and I feel well, I should just take the dose that works for me.
He also said that next time I'm due for a blood test just ask for the tests I need and he'll add them. I am still very keen to get the bloods checked as if there is something simple that can be done to make me feel better I want to take that step... I'm due a blood test in December so I will find out then what my levels are... and I can then take amy action to correct things.
And... if the Endo wont change my dose I can get a prescription from my doctor.
I went all prepared for a battle and instead he was a perfectly reasonable chap that seemed to totally understand - WOW! I'm happy... I see the endo on Wednesday and I'm pretty sure he wont be so amenable but I feel happy that my doctor will listen to me.
thank you all for the excellent advice - it's given me confidence that I'm not going mad and I need to get things sorted.
Great news, you sound as if you have a very understanding GP and good luck on Wednesday. I really do suggest that you supplement with all the recommended trace elements after your appointment and hopefully things will improve...Keep in touch..Take Care xx
There are good days... and then there are bad days... and today was the latter
I went to see the endo... he listened patiently to my tale of woe and looked perplexed and concerned. Then he looked at the figures for ages and declared that I was over medicated. He says my suppression is too much and I can come up to 0.1 and if he can raise my TSH I will feel better. So... he dropped my dose down from 150 to 125mg.
I asked if t could be perhaps iron/b12 and at least he did give me a script for a whole raft of blood tests... and then gave me my scripts for the yearly scan and my thyroglobulin blood test and said see you in 6 months.
My husband has said I should see what the bloods say... if they all look fine and I reduce my dose and feel worse the endo cant say it's anything other than the drugs.
My problem is that I cant figure if my sysmtoms are hyper or hypo... they feel hypo but I have this odd anxiety symptom which he says is hyper. I just think my T3 is too low and I'm pretty convinced that with this drop of levo my T3 will rop out of the bottom of the range... I'm not sure what the implications are if it goes too low but I'm guessing it's not going to be pretty.
So I'm just confused and miserable... he's convinced I'm over medicated... i just want to feel normal again
You might find it helpful to print off at least part of the following articles to take to your appointment -
Hi, I sympathise with you so much! I feel just like you, I've been thru the op and the RAI 2 years ago, and they have lowered me down all the time and now I only take 100 Levo . I started on 200 and felt much better. I have all the symptoms you have described also, and feel at my wits end with it all. No doctors take it seriously, it's only the people on here that seem to understand. I hope you feel better soon, please let me know if you find any answers or cures that help. X
It's odd how there are so many voices with the same complaint but there are so few people ready to believe, understand or act? I am always staggered at my endo's ability to simply refuse to accept that my drugs could be wrong! Hope you fnd soem answers! x
well four weeks have passed since I started on the lower dose and I have to say I feel awful. I feel like I am being made ill by the doctors who are meant to make me feel better.
Here are my latest results... there were loads of others taken but all were in range and nothing looks out of place.
TSH (0.27 - 4.2) - 0.55
T4 (9.3 - 17) - 10.8
T3 (3.1 - 6.8) - 3.4
My T3 has dropped again in the last 4 weeks a little... my T4 is much lower than the last test a year ago and most worrying, my TSH has risen. I had cancer so my TSH is meant to stay suppressed so this is very bad for news for me.
I'm not due to see the endo until March/April but I am going to get an appointment with my GP so that I can have a prescription for a higher dose... I'm hoping that they will both now agree that if nothing else my TSH should be suppressed.
What are your thoughts? I know the results are in range but does anyone here think they're too low for someone without a thyroid and supposedly having TSH suppression?
Hi, it sounds like they dont have your medication right yet? I go a lot by how I feel and end up debating with the Endo. I'll give you a bit of my history perhaps this could help (I'm no medical expert).
I had TT, RAI - treatment finished about 2 years ago and I still cant find a comfortable level.
Had side effect of hypocalcaemia after op, straight to emergency - calcium drip - had to take calcium for while.
Was started on very low dose of T4 (75mcg) felt awful for ages...in opinion it was incremented too slowly.
Was completely deficient in D3 - had theraputic dose - worked but still top up.
Present bloods:
To give you an idea:
TSH - surpressed: 0.01
T4 (range 9-21) was 18 (and felt terrible) ...now going up into 20's again where feel better.
Total T3 (range 0.9 -2.4) is 1.7
Free T3 (range 2.6-6.2) is 4.5
My T4 was lowered to 125mcg in past but I cant cope on this, once my Free T4 drops into the 'teens' I feel terrible - falling asleep early and cant wake up.
I am taking 150 T4 and have been on 10 mcg T3 for a few weeks.(as a starter)
I still am not feeling 100%, but within a week of starting the T3 I felt more 'alert and not so much brain fog.
I think its a case of trying levels to see how you 'feel' and not what is in the 'ranges' all the time.
Can anyone say if they changed their T4 to T3 combo ratio to feel better or ended up taking more T3 than T4.........
Took a while to convince endo for T3 I wonder if I dare to mention NTD.
I'm also looking into B12 and other vits to see if this makes a difference.
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