TSH normal, temp consistently low, still tired?

[nickym1]

Latest blood test showed TSH of 0.46, therefore labs did not complete T3 and T4 testing. I am on T3 only, and now splitting 40mcg 3x per day.I do feel slightly improved, but still taking sleeping tabs to sleep as am otherwise still insomniac (new problem since thyroid trouble started). Occasional severe episodes of anxiety. Temperature is barely reaching over 36 degrees - often 35.5. My normal temp before was 36.4 which I always thought low anyway.I never feel refreshed in the morning (never have) regardless of length of time asleep. Told my B12 was also mid range. What's going on with me? I'm excercising more to try to get myself better, but symptoms are not really improving.

My GP is requesting T3 and T4 urgently, but twice now labs refused. Is it necessary if I'm on T3 only. I have no thyroid. Getting frustrated.

Cheers, Nicky.

[shellybelly_71]

Hi,

Have you been given your RAI yet? Have you seen the oncologist yet? Who ever put you on the T3 speak to them, you need more than what your on. Think I have mentioned to you before that I was on 60mcg a day, 20mcg 3 times a day. When I had my blood tested while on T3 it was odd, TSH 0.14 0.35 - 5.00 FreeT4 <5 9-21 T3 2.5 0.9-2.5 It wasnt free t3 so never really understood that. Hope you get some answers soon.

[nickym1 in reply to shellybelly_71]

No RAI yet. Booked into Oxford on April 22nd. My local oncologist told me to up my dose from 20-60 which I did and it made me ill. So Oxford onc said reduce to 30 mcg per day over 3,doses. I decided to take 20 upon waking, 10 before lunch, 10 before dinner. Shaking is better, heart improved, sleeping BAD. Everyone I talk to either doesn't understand t3 (gps) or doesn't seem too interested. Last message from oncologist was keep taking tabs twice a day

and phone cancer nurse specialist if any further questions. My cancer nurse (useless) left last Friday. I've not been informed of a replacement. Feeling quite alone with this. Thanks for prompt response.

Nicky x

[shellybelly_71 in reply to nickym1]

No wonder they call it the lonely cancer eh. I would say it does take some getting used to the T3. I struggled with getting the timings right. I tried to give between 7-8 hrs between each tablet. I would try and get yourself up to the 60mcg as soon as you can, it will help with coming off prior to the RAI. All the horrible feelings you get with the T3 do pass. I wouldn't worry about trying to exercise. It took me just to manage and work, to be fair am still the same lol. I used to take my first does on waking, then at 4pm then at bed. Make sure you follow the golden rule of just water and nothing to eat or drink for an hour after or before you take them. It does make a huge difference.

[nickym1 in reply to shellybelly_71]

Hi Shelly,

I have been worried about taking a T3 before bed incase it hindered sleep further. But from today I am spacing doses 7-8 hourly as suggested. Wish me luck. Just found out that the hospital changed their minds about my cancer from papillary to follicular. Wish someone had bothered to tell me. Just phoned nurse to confirm and clarify, who said they are essentially the same, but it makes me even less confident than before.

No one I ever speak to says the same thing, or they simply don't have a complete set of notes available. What has your experience been re cancer care?

[shellybelly_71 in reply to nickym1]

The only time I have ever struggled with sleep is when I have been off my T3 before RAI follow up scan. I wasn't given any advice on how to take the T3, just take it 3 times a day, must admit it took a few weeks to get it right. I to had follicular cancer. I had a nightmare at first, I was given my pathology results from my GP. Huge mistake from surgeons secretary. Days later I was up to see the surgeon again who had spoken to the oncologist.Basically 2 options, have other half out or come in every year for a scan of the rest of the thyroid, the option I now wish I had went for but didnt. Lack of information. The old if I had known then what I know now. They did find a micro carcinoma on the other side, this time papillary, but my oncologist said it would probably never have given me any bother. I have never been asked if I would like to speak to anyone. Like a cancer nurse or someone just to chat to. My oncologist said butterfly.org.uk is helpful. I would suggest them if you need to talk to someone. They seem very helpful. Ive just had to use the internet for info and my loved ones for support. Good luck, and we are here for you x

[nickym1 in reply to shellybelly_71]

Hey Shelly, my understanding is that you need to have whole thyroid out in order for RAI to work in whole body. If you leave half in, it will just suck up all the radioiodine and the treatment won't do the full job. Also, I've been told to expect 6 monthly scans until clear, then annual checks anyway. How often are you going to be checked?

[shellybelly_71 in reply to nickym1]

Yes you need to have to whole thyroid removed to have RAI. I had the right side out, carcinoma was found then I was given the options. If I had left the left side of my thyroid there I would just have had scans ever year to check. I had my RAI in August, a month after second thyroid surgery. I then had my follow up scan the beginning of Feb, you read different stories. But my oncologist wanted the follow up done in 6 months. As far as I have been told I will not have anymore treatment, I will have 3 monthly check ups until I suppose he changes it. I have heard you will be checked for life after thyroid cancer.

[nickym1 in reply to shellybelly_71]

Yes, that all sounds like what I've been told. I think I've been e-waffling! Sorry.

I've also been told to expect 2 rounds of RAI but it will depend if I stay with Oxford, or go back to Reading. I feel like I'm obsessed with all this - it just takes over doesn't it?

Thanks for always sharing Shelly :-)x

[shellybelly_71 in reply to nickym1]

Yeah it changes your life, most don't understand our need for answers and knowledge. Try and be as positive as you can, do the things you did before but listen to your body. Keep us posted x

[nickym1 in reply to shellybelly_71]

Also, Margo has left a note for you further down page x

[Margo in reply to nickym1]

My symptoms are the same as yours Nicky, I too had thyroid papillary cancer, and total thyroidectomy in 2003. I am now on T3 (having tried Levo/Armour). I am taking 50 mcg's upping slowing from 20, the more I increase the more tired I become. I have disturbed sleep, and am always tired and temp' like yours 35.'ish. Very cold hands and feet... Some people have suggested that it may be an adrenal problem.

If you find out what is going on please let me know?

Good luck

[nickym1 in reply to Margo]

Margo, I will if I learn anything.

It's very frustrating isn't it?

I've just arrived home from work, as I'm back one day a week until my RAI begins - to find a letter which I've been copied in on from Onc in Oxford to Onc in Reading talking about my FOLLICULAR CARCINOMA. My surgeon told me it was Papillary! Nobody I ever speak to seem to have a complete set of notes for me, and it fills me with zero confidence. Surely if they change their minds about cancer type someone should tell me?

How did you find your treatment after diagnosis? Going to ask Shelly the same.

Thanks for your input.

Nicky x

[Margo in reply to nickym1]

It was almost 10 years ago now since my thyroidectomy, and in those days I accepted whatever the doctor/consultant said to me. It's only the last few years I am questioning everything. I was told they had found a cancer, and removed my thyroid, yet last year when I was querying something, I was told I had two op's for my thyroid, which was very confusing?? I have actually arranged to see my file notes at my hospital. That should be enlightening! I had two lots of RAI, within 6 months of each other. I don't know why I had to have two, and I didn't ask. I was put on Levo' which I took for a number of years, as I didn't know there was an alternative and carried on feeling poorly as I have done all my life. It wasn't until somebody told me about Dr. Peatfield that I have questioned everything and have tried Armour and now on T3 it is an uphill struggle. I don't suppose I will ever be 100% but am still aiming high.

Keep asking questions and don't be fobbed off by anybody, it is your right to know what cancer you had. Keep us posted. x

[Margo in reply to shellybelly_71]

How are you getting on with T3 shellybelly_71. Are you still taking 60 mcg of T3 x 3 a day, is it working?

Regards.

[shellybelly_71 in reply to Margo]

Hi Margo

No I am now on 200mcg of Levo. Dont feel great to be honest, night need an increase but dont go back to the hospital until May 7th. While on Lithyronine I suppose I was ok, I didnt have the brain fog I seem to have now. Once I was given the all clear I was changed to levo, I have been on that for over a month now, with a few changes, 200 was to much at first, now it doesn't seem enough. I had came in today and had to go to bed and fell asleep for over an hour. Hopefully I have a better day tomorrow. As you have said we need to ask question, after all its our body. x

[Margo in reply to shellybelly_71]

Bizarre Shelly, that the hospital swopped you over to Levo having had T3. It is so hard to get it right, and I agree with the above, it DOES take over your lilfe. Keep us posted how you get on. x

[shaws]

I am not medically qualified but I thought if you didn't have a thyroid gland that you were given enough meds to suppress your TSH.

This is a link and if you cursor to question January 2, 2002 this info may help you. Dr Lowe and other doctors like him who treat thyroid gland problems look to the tissue level of the patients rather than the blood levels. I didn't understand 'tissue levels' but I do now because I feel well. If you read the first tw questions/answers and cursor to question January 2, 2002.

Dr Lowe and others medicate their patients till their symptoms go and are not dictated too by the TSH level. Some of the links within may not work.

web.archive.org/web/2010122...

[nickym1 in reply to shaws]

Thanks Shaws, have read info - will read it again as struggling to absorb and understand. I also believe that tsh should be suppressed, however a nurse at my surgery told me yesterday following blood tests that it shouldn't be too low, suggesting mid range is best! I'm certain that tsh should be suppressed after thyroid cancer - shouldn't it?

I really hope to have a Dr on side after RAI when they put me on t4, then I'll start this process all over again! Hey ho.......

Thanks for response, have a lovely Easter. x

[shaws in reply to nickym1]

The nurse is wrong. TSH should be 1 or below for hypo or even suppressed. I assume it is the same for people who have their thyroid gland removed but someone may correct me. That's why most of us are unwell, the insist on a TSH within the reference range.

[shellybelly_71 in reply to nickym1]

Your nurse hasn't a clue. Your TSH needs to be suppressed. My letter from the oncologist to the GP said on it 200mcg Thyroxine to suppress TSh for Thyroid carcinoma. My oncologist said stay away from the GP lol. Shows there lack of trust in them.