Good Endo/multi disciplinary consult in Joint Thyroid Clinic today...

[Clutter]

Good consultation again today following the breakthrough made with the endo in Feb. T4+T3 combi is working well for me as TSH is suppressed <0.01,

FT4 18.4 (9-19),

FT3 5.2 (3.2-6.2),

Thyroglobulin <0.01 and

Thyroglobulin antibodies <20.0 so no signs of cancer recurrence.

I fudged it a leetle bit when I told endo I'd upped meds but didn't tell him the increase was after the TFT above. He's writing to my GP authorising increase of T4 and T3.

He strongly advised I divide the T3 into 2 x daily doses instead of the one morning dose I take. He thinks my body will be registering peaks and troughs of T3 even though I don't think I notice them. I'll give it a go for a while as I'll try anything that improves wellness and recovery.

He asked what supplements I'm taking but stoopidly I didn't ask why. I wonder whether the vitD message is getting through? I asked about calcium testing as my last was 2 years ago and he simply said I should have a Dexa scan to check bone density now my TSH is suppressed again and in view of my low weight. Oh well!

Complan type supplement was again suggested for low weight but I can't abide it so I've splurged on caramel eggs and whipped walnut creams that jumped into my basket in the £ shop

Maxillo Facial surgeon recommended Bioxtra mouth gel for dry mouth at night (possibly damaged saliva glands post RAI) but neither could account for the extreme saltiness also only experienced at night. Another hypoT px mentioned the same thing to them.

So, it's been a miserable two years but I think they're behind me now and things are really looking up thanks, in no small measure, to the advice and support on this forum. Thank you

[silverfox7]

Hey brilliant news. Please keep posting your progress.

[mistydog]

Glad that you are feeling so much better! Gives us all hope for the future!

[Clutter in reply to mistydog]

I hope it does, Mistydog. I felt so bleak I really didn't think I had a future last autumn.

[Hidden]

Hey Clutter

I had ThyCa too although didn't do RAI (they wanted me to). What are your adrenals doing? Low weight can be an adrenal issue? Have you done a genova test? I know you are active on the forum so probably teaching you to suck eggs but have you got all your vits, minerals and crucially iron sorted out? And much as I love caramel eggs also, all that sugar as part of your normal diet is a really bad idea - it feeds candida and messes with so much. If they discovered now it would be banned, it's so harmful. Your depleted system will really struggle. Diet has been a massive thing for me.

Personally I believe TT patients need NDT. If you aren't feeling significantly better soon, I'd consider a switch. My team at big London teaching hospital have been very supportive of this, despite not being able to prescribe it.

Finally, yes T3 should be multidosed -mine was 10 + 10 + 5 along with 175mcg of T4. I still felt like utter cr@p though, didn't start feeling better until I got onto bioidentical .... Iron was the other massive thing for me. Getting optimal (we are talking just a few points up from a very healthy look 'normal') really did make me feel better.

Best of luck

Rebecca

x

[Clutter in reply to Hidden]

Hi Rebecca,

I had Hurthle cell carcinoma which is an aggressive follicular variant and due to the size of the tumour and my age RAI seemed a sensible precaution.

I've always had low weight (family trait), even after quitting smoking, except for a period when it increased two dress sizes in 6 months before rapidly falling off a year or so later. In hindsight, I think the gain may have been the onset of hypoT/Hashi's but I felt very well at the same time, so perhaps not. I gained weight when I came of Levo and lost it again when I resumed. I'm convinced it's Levo preventing weight gain but not prepared to start all over with NDT while I'm just starting to feel well-ish.

Vits were deficient and low in range in November and getting them high in range helped enormously.

I've never had adrenals tested and if I had issues I think they must be resolved now. I am reluctant to cut out gluten, sugar and dairy as I have no appetite but I acknowledge my diet is not nearly as good as it should be and may need addressing.

[Hidden in reply to Clutter]

Hi there

I hear you. Have you got Dr Peatfield's book? If you look up his checklist for adrenal fatigue then you most certainly fit, and for the sake of £65 its worth checking. If you've been struggling on levo for a while, had a TT, and RAI and now have added synthetic T3 - which is hard on the body - I'd say it's certainly worth checking it out. If you'd been ill for a while, then that adds to the chances too.

And again, I understand about the diet - it is boring and a faff - but honestly, it's worth it. A good paleo diet with lots of good fat (think of all those veggies roasted in duck fat, yum) would be good - for gut bacteria, adrenals, hormone cascade (good fat is at the top of the cascade), mood, digestion, the lot. You could have nuts, sticky paleo brownies, roasted meats, smoothies, loads of fattening stuff. Gluten is up there with sugar in being of the devil, even if you don't have autoimmune thyroid illness. chriskresser.com/the-gluten...

Of course it's up to you, I do understand that don't want to rock the boat feeling, I was so poorly I'd have done anything - fortunately unlike you I 'only' had stage one Papilliary cancer so my survival chances are as good without RAI.

Glad you are feeling better, but honestly NDT was like going from a clapped out old banger to a Rolls Royce, unbelievably better!

Rebecca

x

[Hidden in reply to Hidden]

PPS - feeling even better is usually found for us TT survivors with a FT3 just at the top or just over the top of the range. My T4 is now nearly 21 and my T3 is 7.7 and my endo is happy with this .... just thought I'd chuck that in there Don't be scared to keep going - blood tests are interesting but as you know, not the whole story. My endo has agreed we can just do the tests for 'drill' to check my cancer markers but we are going on how I feel. x

[Clutter in reply to Hidden]

Thank you. I agree about bloods, it was interesting to see how FT4 & FT3 are now I'm feeling so much better but suppressed TSH, Tg and TGAb are the important ones.

Roasties in duck fat has made me drool. I do intend to jettison ready meals and cook from scratch as I improve and will definitely be looking into cutting gluten and Paleo but I doubt caramel eggs will ever be abandoned by me

[MLML6 in reply to Hidden]

Hi Rebecca,

Could you tell me which London teaching hospital this is? I have been on NDT for several years as T4 and T3 didn't work for me either. I now need to see an NHS endocrinologist to have my thyroid/neck checked out and I'm apprehensive not only about the check up but also about the endocrinologist as I don't want to end up with one of those totally hostile towards NDT. Your team sounds good - if you could let me know I'd really appreciate it.

[Clutter in reply to MLML6]

MLML6, Rebecca is now posting as GirlScout2. Drop her a Private Message with a link to this thread.

[MLML6 in reply to Clutter]

Many thanks for letting me know!

[HarryE]

That's great! Really pleased for you xx

[alangardner]

well done you for taking on board the help from the good people on this site and using it in such a constructive way to get you back to a semblance of wellness for yourself ......keep up the brilliant work and never forget that even when your fine YOU could help so many others in time to come with your knowledge ......alan xxx

[Clutter in reply to alangardner]

I won't forget, Alan. I expect the horrors of the past two years will fade but I doubt I'll forget the desperation, fear and sense of hoplessness. I hope I'll be of help to others in the same position.

[infomaniac]

Ah that's great Clutter. Hope you've finally cracked it and continue to be well - it's nice to hear a success story

[Clutter in reply to infomaniac]

Thank you. Building fitness and stamina is next says the woman still in her jammies

[tavy]

fantastic well done you have it sussed.

[Coastwalker]

Good results, onward and upwards Clutter, glad to see you still have your sense of humor, it made me

[Heloise]

Those are the best test results I've seen on this forum. It seems more and more patients have been able to receive T3. Has something changed to cause this and is it the same for NDT? I'm happy there are Endos out there that are helpful but I'm sure your own efforts made that happen.

[Clutter in reply to Heloise]

Endo wants TSH suppressed so he's happy and I want FT4 and FT3 good, so I'm happy My consults with the endo weren't at all satisfactory prior to Feb. I was going to tell him to go forth and multiply but after an argument about T4+T3 combination and good evidence based research (or lack of in his opinion) he agreed to prescribe T3. I'd been self medicating and the improvement in my health was so obvious I think he couldn't deny it was beneficial for me.

My GP told me the practice has been instructed by the CCG that T3 shouldn't be prescribed except in exceptional circumstances. Endo advising that I should be prescribed seems to have overriden that.

[Heloise in reply to Clutter]

Well, that is great and hopefully more Endos will become as reasonable as yours and, also, that he will treat other patients in the same manner. He actually noticed you were well???? OUTSTANDING! I hope more follow your lead.

[Clutter in reply to Heloise]

I certainly hope he'll always bear in mind that Levo monotherapy can make some people ill instead of saying symptoms are not thyroid related. I think that was thoughtless and cruel, makes you wonder just what is wrong and made me feel like a failure because I wasn't responding to treatment.

[Heloise in reply to Clutter]

They prefer to blame the patient. What an attitude has developed since people are now sicker than ever. Law of supply and demand I guess. If we could just get those prescription pads we might even the playing field.

Not everyone is as brave as you were in adjusting your own dose.

[Clutter in reply to Heloise]

I was very desperate and didn't feel I had anything to lose

I don't understand why thyroid meds and B12 injections are prescription only in the UK but are available OTC in Europe. So paternalistic!

[waveylines]

Great news Clutter -i know how hard you have tried to get things moved on..... her'es to a 'well' 2014!

[Clutter in reply to waveylines]

I'll drink to that

[BeansMummy]

Most importantly of all - would you recommend caramel eggs and whipped walnut creams as a supplement that we should all be considering now?!! <adds note to shopping list>

[Clutter in reply to BeansMummy]

Definitely. To be eaten 3 x daily after meals.

[BeansMummy in reply to Clutter]

Hmm, wonder what the chances are of me getting these prescribed then, not sure I can afford to go private So nice to hear a successful thyroid story.

[nickym1]

I too have salivary gland issues. I also had RAI last April for Follicular TC. Just yesterday, my right parotid gland swelled like a balloon for an hour or so every time I ate, and was incredibly painful. I also get the thick salty saliva thing. Glad you had great results.

[Clutter in reply to nickym1]

I had a blocked saliva duct several times many years prior to RAI. I thought I had mumps as my face was so swollen. GP recommended gargling with concentrated lemon juice, PLJ which sorted it out. I refused a biopsy as PLJ worked (didn't think about underlying causes back then). Very difficult to chew and swallow food without saliva.

I think RAI has reduced function a bit causing night time dryness. Surgeon said it is common in patients who have had radiotherapy and the Bioxtra moisturing gel will help. It's available OTC but I may ask GP for a prescription if 40ml doesn't last long. Saltiness seemed to surprise him but not alarm him. Do mention your swollen parotid gland to your GP and specialist if it persists but see if lemon juice gargle eases it in the meantime. It's very unpleasant.

[Angel54]

Brilliant News Clutter long may your good health continue xxx

[Clutter in reply to Angel54]

Thanks, Angel

[Hidden]

That's brilliant Clutter. So pleased to read your news.

Ps I loved your subtle time shift about upping your meds! Fantastic!

[belwom]

Wonderful Clutter - So did you have to take in research articles to your consultations with the endo and was it all taken on board? I hope it wasn't too much of a battle but it is encouraging that the endo noticed and took account of your improved health.

[Clutter in reply to belwom]

Printer is fubar, so no. He said "there is a lack of good evidence based random control trials into the benefits of combination therapy" and dismissed US research but backed off when I cited European research and offered to provide links to articles from the European Society of Endocrinologist

It's futile to argue EBM and RCT anyway when living proof of benefit is sitting in your consulting room. I'm grateful that he is looking after me now, even if I did have to provide my own solutions to recovery.

[Hidden]

Excellent news and really pleased for you. It's so refreshing to read a success story when you've really been through the mill.

[Clutter in reply to Hidden]

Thank you. Everything I've learned and researched has been through shared experiences, help and advice posted on thyroid fora, Twitter and FB. Thank gawd for t'internet.

[Hidden]

Really pleased for you clutter, you are so helpful to members glad you making some progress x

[Clutter in reply to Hidden]

Thanks Kim Yes please! I'm looking to plump out face, big up boobs and pad out bum and hips. Fed up with androgenous look. Spare energy and stamina also gratefully received for rehoming

[Hidden]

PS if you would like a bit of weight I got plenty -no charge lol c

[Hidden]

So pleased for you - and thanks for sharing the knowledge gained along the way (albeit painfully) J

extra bum padding readily available too!

[Clutter in reply to Hidden]

As the grateful recipient of others shared knowledge I'm very happy to 'pay it forward'.

Bum padding welcomed. I've always hankered after a pert upthrusting bum but have a bony flat arse. Had cleavage for a year too, but now have this side up sticker *snotnsniff*

[2006]

Clutter I am so happy for you. I only hope you continue to feel better and better!

[Clutter in reply to 2006]

Thanks 2006. I'm as weak as a kitten but I don't feel ill any more. I need to build fitness, slowly. There's extreme housework needing attention on my horizon.