HELP NEEDED PLEASE

[Delgor]

Feeling ill and very stressed and having symptoms of both hyper and hypo states including insomnia, anxiety, heart palpitations, racing pulse, feeling cold all the time, awful chronic fatigue, left ankle swelling Was diagnosed with CFS over 20 years ago after thyroidectomy and put on antidepressants but got my life back again when I saw Dr Skinner and was put on 3 grains of NDT. Came off antidepressants 18 months ago and was doing fine and got my brain back, except sleeping wasn't brilliant. Started feeling unwell in June of last year with IBS problems (which I now know is leaky gut) and is now being addressed, but also developed thyroid multi nodules and had scan in the autumn when I was told my thyroid was growing back. Endo at hospital wanted me to come off all medication (was then taking 2 3/4 grains of Armour) but I refused as winter was upon us let alone covid-19 and didn't have complete faith in him anyway. Have had to reduce medication since - I know for a fact that reducing T3 has caused me problems in the past with another Dr. I feel at the end of my tether but not depressed in any way so have resisted GP's advice to go back on antidepressants and instead did my own thyroid function test (as per the advice on HU) to whom I am indebted. Clearly results show that I don't have any antibodies so probably I'm overmedicating (have now reduced to 2 grains in past week) but can't help thinking that I'm maybe making too much RT3 given my symptoms. Will be having another scan next week when it is hoped the nodules haven't grown and will further enlighten me as to whether thyroid gland may have grown anymore. Meanwhile, should I let the endo take me off medication completely or proceed at a slower pace with getting myself tested every six weeks (GP will oblige I think).

Results in January 2021: TSH; 0.01 (0.3-4.5) (has always been that); T3: 6.4 (3.1-6.8); FT4: 20.2 (higher than ever before)

Blue Horizon Panel Results taken 22 March 2021:

CRP: 0.62 (5.0) mg/L

Ferritin: 85.0 (13-150) ug/L

Magnesium: 0.87 (0.66-0.99) mmol/L

Cortisol (Random): 429.0 (113-456) nmoI/L

TSH: 0.005 (0.27-4.20) miU/L

T4 Total: 139.0 (66-181) nmoI/L

Free T4: 28.00 (12.0-22.0) pmoI/L

Free T3: 7.35 (3.1-6.8) pmoI/L

Anti-Thyroidperoxidase abs: 9.0 (34) kIU/L

Anti-Thyroglobulin Abs: 11 (115) kIU/L

Vitamin D (25 OH): 147 (50-175) nmol/L

Vitamin B12: 1045 (145-569) pmoI/L

Serum Folate: 24.40 (8.83-60.8) nmoI/L

Many, many thanks in advance for any advice you can give me.

Delgor

[FancyPants54]

Cripes! You don't want to come off completely. What do these doctors think!

But it does look like you need to reduce a bit more as both FT4 and FT3 are high. What were you taking when you had the last bloods done? You say you have reduced to 2 grains, so I guess you just need to sit and wait now to see how that change sits with you.

[Delgor in reply to FancyPants54]

I was on 2 3/4 grains and then reduced to 2 1/2 grains and now down to 2 grains this past week

[greygoose in reply to Delgor]

That was too much of a reduction. Only 1/4 grain at a time.

[Delgor in reply to greygoose]

Oh thank you so much - will up my dosage my 1/4 grain tomorrow!

[greygoose in reply to Delgor]

You're welcome.

[Lalatoot]

Rt3 is a safety valve. If you have too much ft4 more of it will convert to rt3 to reduce the production of ft3. Rt3 does not block T3 cells as was once thought. It has its own purpose and is excreted from the system. I don't think your symptoms are to do with rt3.If you have had gut issues that are now improving it could be that you are absorbing the thyroid hormones better which means you are needing a lower dose as well.

[Delgor in reply to Lalatoot]

Many Thanks

[radd]

Delgor,

You previously advised of Graves Disease and a thyroidectomy. Even one cell can encourage the production of further antibodies. You have only been tested for antibodies associated with Hashimotos.

A Low TSH is fine when medicating NDT but thyroid hormones are elevated so I agree you need to reduce NDT dose but why on earth would you want to just stop medicating completely? Your poor body will wonder what is going on if you suddenly deprive it of all thyroid hormone. Reduce slowly and test every six weeks for further dose adjustments.

Your gut issues could be down to gluten intolerance that is common in people with autoimmune disease.

[Delgor in reply to radd]

Thank you - yes did online intolerance test and now on gluten and dairy free diet past couple of weeks or so

[Delgor in reply to radd]

Sorry, I've just taken on board what you said about the antibody test being just for Hashimoto's - does this mean I should be looking to get another one for Graves?

[radd in reply to Delgor]

Delgor,

Yes, remnant thyroid cells after total thyroidectomy in Graves’ disease can become stimulated under the mediation of TRAb causing excess thyroid hormone. Hyper & hypo symptoms can overlap and I am surprised they haven’t tested for this given your thyroid is growing back.

It sounds like your doctor wants you to stop NDT as he probably isn’t familiar with prescribing it or the often resulting lower (than usual) TSH level. But even if you have a reoccurrence of Graves, your thyroid hormones aren’t high enough to suddenly stop NDT. Ask for TRAb to be tested asap and if positive only then would you have to evaluate your use of NDT.

And what did they say about your nodules? Most nodules are benign but ‘hot nodules’ will overproduce thyroid hormones.

[Delgor in reply to radd]

Radd,

Wow - thank you so much for all your input! Yes, my hospital endo has no knowledge of NDT (he is very much a Levothyroxine man but I never got on with it). Really don't think he likes me too much as I've questioned him over things and the only test he has done so far was for adrenals because I asked for it as I felt so stressed. He couldn't understand why I asked for an antibody test as he didn't think it mattered what thyroid disease I had. Originally I had a quick scan which showed one to be looking suspicious and then had a really thorough scan in the autumn whereby they measured nodules and stored information for future use but they weren't thought to be cancerous and so no biopsy or needle aspiration test was performed. Follow up scan on Wednesday next week. Haven't heard of TRAB test before but will follow up - could this mean I may be better on a combination of T4 and T3 as opposed to NDT?

[radd in reply to Delgor]

Delgor,

Gosh, your endos knowledge and attitude sounds appalling.

Graves is caused by TSI IgG antibodies (Thyroid Stimulating Immunoglobulins) which attacks TSH receptors encouraging high levels of TSH that stimulate the thyroid to produce excessive levels of thyroid hormones. A TSI test will measure the amount in your blood and a TRAb test will measure the level of thyrotropin receptor antibodies.

It obviously matters a great deal what disease you have as even at this late stage Graves can return. I have given links for a couple of papers as examples, and if you goggle something like ‘Graves recurrence after thyroidectomy’ you will get more info.

Re switching to synthetic T4 & T3 I don’t know but would be wary of the effect of NDT (ie thyroid gland possibly stimulating TRAb further). However, I don’t have Graves myself as am a Hashi-girl so perhaps if Graves antibodies were to prove elevated you could post a new question for others with experience.

So the nodules aren't cancerous, and presumably not 'hot' but this needs to be confirmed. It this were me I would keep reducing thyroid hormone to a sensible level, establish whether Graves has returned, get a definitive diagnosis on nodules, and be vigilant about thyroid hormones steadily reducing (coz if you do have Graves they could suddenly start jumping about). Perhaps start keeping notes to present to your endo. He might learn a thing or two 😬.

.

endocrine-abstracts.org/ea/...

casereports.bmj.com/content...

[Delgor in reply to radd]

I know I keep saying it but I am extremely grateful for all the input - have learnt so much and will definitely follow through on all the advice and link-ups that have been given. Thank you so much!

Delgor

[Lalatoot in reply to Delgor]

Graves antibodies are different to hashimotos antibodies. Once the thyroid is destroyed with hashimotos that is it. But with Graves the antibodies continue. As Tadd says get tested for Graves.

[Delgor in reply to Lalatoot]

Thank you once again and yes I will certainly get tested as I feel it's important to know as I believe I inherited this and it may help other family members

[HashiFedUp]

feels like you’re over medicated - i think i am slightly over medicated at the mo as woke up at 4.30 this morning and couldn’t get back to sleep. think its too much T3 in particular. So sorry you’re depressed. nothing wrong with anti-depressants. thyroid disorders can disrupt chemicals in the brain so why not take them if you need them? It might help a little bit over the next months or so.

[Delgor in reply to HashiFedUp]

No I'm not depressed at all and was put only put on the antidepressants as I couldn't sleep and was feeling extreme anxiety and losing weight rapidly - my mistake was in staying on them for so long but thank you anyway

[pennyannie in reply to Delgor]

Hey there Delgor :

I too am with Graves, but post RAI thyroid ablation in 2005 :

I'm now self medicating and taking NDT and much improved as left very unwell by the NHS as only ever treated with T4 - Levothyroxine and prescribed anti depressants when I wanted further help with my continued ill health.

You might find the Elaine Moore Graves Disease Foundation website interesting if you don't already know of it and Elaine is now a leading authority on all things Graves and is available, through her website, for one to one questions.

Her first book was my starting point in putting myself back together again along with this amazing forum.

Graves is an auto immune disease and as such it's for life and in your DNA :

Antibodies can wax and wane and it's sensible to get these checked out :

I would stay on a slightly lower dose of NDT until you know more :

[Delgor in reply to pennyannie]

Thank you so much Pennyannie - I was very interested to hear about the Elaine Moore Graves Disease Foundation and will follow up. I obviously was luckier than most in finding a doctor who put me on NDT all those years ago and was just so happy to be feeling well with having young boys to care for that I didn't investigate thyroid disease thoroughly enough other than reading some books.

Yes, I echo your thoughts well and truly in that this is an amazing forum and I feel deeply indebted to everyone for their valuable time and advice!

[pennyannie in reply to Delgor]

Ditto :

Yes you were very fortunate that your original doctor had options to prescribe and could take an interest in and make a difference in restoring patient health and well being.

You will have to become something of your own best advocate I'm afraid as in my experience Graves is poorly understood and badly treated in the NHS mainstream, and the more I learnt the more alarmed I became and my symptoms exacerbated !!

Take good care, keep us in the loop :

I do find I am on quite a low dose of NDT ( 1 + a generous 1/2 ) - compared to other people, as when I try and increase I seem to become stuck like a magnet looking for food from inside my fridge !!!

I surmise that even with a good high T3 level and no other " symptoms " of hyper this is my warning to myself as this is similar behaviour to when on the AT drugs, and yes, probably at the wrong dose of Carbimazole ????

[Delgor in reply to pennyannie]

Back Again! No it hasn't all been plain sailing I can assure you - battles with GP's who told me I had post natal depression after births of both sons when the exact opposite was true (now know it was post partum thyroiditis). When my thyroid eventually went overactive after a virus I was told it was depression as I had lost so much weight and was sweating profusely and feeling anxious - refused to leave their office until I had been referred to a consultant. Had breast cancer a couple of years later following thyroidectomy (consultant thought there was definitely a correlation between hyperthyroidism and the former). Didn't get on with Levothyroxine and diagnosed with CFS. Found the Dr. who turned my life around whilst reading ME magazine as he had noted many CFS/ME patients had symptoms that crossed over with each other. He was deemed to be a maverick by many other doctors but he turned my life around when it mattered the most and it's sad that he died after going through so many displinary hearings and tribunals. Anyway, hopefully, thanks to all the help on here I can turn things around again and get some much needed energy back to enjoy my young grandchildren. Thanks again!

[pennyannie in reply to Delgor]

I didn't expect that it was and am sorry you have gone through all this :

There is no understanding and treatment now seems to be computer generated with little thought of the person sitting in the chair looking for help, and answers and damage already done seems inconsequential.

I have been more ill since medical intervention, and was fine on the Carbimazole but told it was too dangerous to stay on long term., so given a toxic substance to drink instead ???

Just wish I knew then, what I know now - so disappointed and disillusioned, but then I guess we can all snap that as well.

[Delgor in reply to pennyannie]

Sorry I didn't mean to complain but yes I feel the same as you in that I feel let down by doctors in general after putting all my faith in them. I now realise why I have both osteoporosis and scoliosis to boot but I am where I am and can only do my best to change things. It's been lovely talking to you!