I wrote my story on my profile. I’ll be glad to communicate with anyone who has / had a similar experience and of course all advice is gratefully accepted. This site has been, still is a lifeline to me and I’m extremely thankful to all the generous people who have advised me here.
Unfortunately, I'm still "in the throes" of dis-ease. Help appreciated and needed. Thanks in advance.
Hey there again Koola :
Well it's now over 2 years since our first conversation and I'm now taking Natural Desiccated Thyroid and feeling so much better :
NDT is pig thyroid dried and ground down into tablets referred to as grains and contains all the same known hormones as that of the human gland namely trace elements of T1, T2, and calcitonin plus a measure of T3 at around 9 mcg plus a measure of T4 at around 38 mcg per grain.
I also supplement ferritin, folate, B12 and vitamin D and adrenal glandular on a daily basis and apart from all this I'm not rattling, and more able to get on and do things than I was left on T4 after RAI thyroid ablation for Graves in 2005 and left for 10 years dosed and monitored on just a TSH reading, dosed to be in the range, and prescribed anti depressants when I questioned my treatment and my ever decreasing circle of wellness.
Graves is an auto immune disease and as such, for life, but now I'm self medicating and not front facing doctors adjusting my doses because my TSH is too low, I'm not as anxious and happier doing for myself and dosing to the relief of symptoms rather than guidelines that take no account of the peculiarities Graves Disease or the consequences to taking this toxic substance into your body.
Hi Pennyannie, I'm very glad you're feeling better! I've tried NDT as well as small doses of T3. I feel worse, hyper on top of the tiredness, except I can't lie down and at least relax. I've also been told here that I'm a good "converter", so I'm staying on T4 and keep titrating the dosage.
I do also take adrenal glandular and started repairing these babies a year before I gave up on the NHS and started doing my own thing.
RAI is known to be taken up, to a lesser extent, by these glands and the thyroid / adrenal connection is well documented.
Yes I believe I too am a good converter as I only need 1 + 1/2 grains of NDT which works out at 13.50 T3 + 57 T4 : but I definitely needed the addition of some form of T3 as mentally I became very slow and loosing simple words.
I now feel more relaxed, wake up without that tightness in and around my head and as though my pilot light has been restored and fired up.
I've also dropped about a good dress size since starting NDT - this wasn't my main concern - but a bonus and useful, for those " other ' sizes hanging around going nowhere.
I had my adrenals tested but was then told here that I needed to get a 24 hour test done for accurate results. Only, they don't do them where I live (on a Greek island). so i had to drop it. I wonder if I should have them tested again, the one time one?
I managed to get a short synacthen test but I'd already been on glandular for a good year -
but I'd also read in Dr P's book that this test is not sensitive enough and a waste of time, unless you are with Addisons Disease.
I just took some without wanting further confirmation from any medic -
The fact is true. RAI is picked up by several other glands and organs within the body as I read in Elaine Moore's first book Graves Disease A Practical Guide :
I felt so much better after 6-8 weeks that I wasn't concerned about what any medic had to stay about my decision.
Looking back I guess this was the start of my questioning the medical establishment which inevitably exacerbated my symptoms and saw me move to the " dark side " and self medicate buying my own thyroid hormone replacement.
Good to hear. One more question: which adrenal glandular med, do you take, please? I'd like to give it a go and see if I feel better!
Well the one I started off with has recently been discontinued so, from the same company Nutri Advanced I'm taking the only Adrenal Glandular they offer + the AdrenoMax :
I tried other brands, and didn't notice any difference, but tend to stay loyal to where I find good customer care and support, which this company offers me.
Thank you, pennyannie.
How much levothyroxine are you currently taking
Previous post 2 months ago
Since I switched to Evthyrox, I don’t feel totally incapacitated when I take 100 (as opposed to other brands). So I’m slowly taking it more often, 3 to 4 days a week, and 88 on the others. Don’t feel any difference.
Have you retested thyroid levels
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Many people after RAI need addition of small doses of T3 prescribed alongside levothyroxine
Easy to get T3 prescribed in Greece
I’m taking 88 and recently added another 6, as suggested by Shaws, but only every 3 days, very gently. I’m due for a Lab test this week.
I don’t need any prescription for T3 here – and it’s so cheap I could go and buy out the whole stock in the pharmacy! But very unfortunately, I can’t “do” T3… Just goes to show you how unfair life is… (lol)
As I wrote Pennyannie: I've tried NDT as well as small doses of T3. I feel worse, hyper on top of the tiredness, except I can't lie down and at least (try to) relax. I've also been told here that I'm a good "converter", so I'm staying on T4 and keep titrating the dosage.”
One disadvantage is that there are only four brands of Levo here. I’ve tried them all and evthyroxine seems to suit me best. But I’m thinking that there are many brands of Levo around the world and another one might suit me better. But how to get it without a) a prescription and b) knowing someone in England, France or Germany willing to send me some… and then, no guarantee it will do the job. actually, I could try one friend in Europe who stocks up on her Levo.
One positive thing is that I react immediately when I take a different brand… Meanwhile, I still don’t know how or why I recently lost weight, just as I have no idea why I once gained so much after a meager three-week diet (see my profile). Meanwhile, I’m thankful that, at least in the evening, I have energy to write long answers.
Hi Koola, I had RAI 2 and a half years ago. I'm currently on T4 only, was on T3 recently but had to stop taking it as it made me an emotional wreck, just waiting to try a different brand. I also take B complex, low strength iron and zinc. I can't take vitamin D as it causes me tinnitus though I have tinnitus at the moment, started after taking T3, hoping it will stop now I've stopped taking them but it hasn't yet. Other than that I'm feeling quite good at the moment. I'm happy to help if I can in anyway. Its a long process getting your meds right but you will get there. Xx
Thank you so much for your encouraging words, Hookie01. My tinnitus has also gotten worse. I have no idea from what. I also take VitaminB, D, C and iron. And blood pressure pills, of which I heard they can cause tinnitus... I just got a BP measuring contraption, just to check for a while how my BP goes and if I can stop the pills. But maybe it's one of the vitamins!? One gets desperate. So, it's good to know that you're feeling good. Hope lives eternal and that kinda thing. Xx
P.S. How did you find out that the Vit. D was causing yr. tinnitus?
It just dawned on me one day that it only started when I started taking vit D, so I stopped taking it and it stopped, started taking it again and it started again. I've tried all different brands, strengths, natural brands and they all do it. They do say it could be if you take high strength then your magnesium levels drop really low which causes the tinnitus or low Zinc can cause it too but I just don't know.
Did you try adding more magnesium to the "mix"?
Not yet no. I did start taking magnesium but the one I was taking made me feel really groggy in the morning so stopped it, the next one seemed to cause me pain in the rib areas so not looked for another yet.
I copy / pasted info on Magnesium from one of Admin.'s posts: The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
hope it helps, Hookie01 ! keep me posted 
Well funnily enough I have just got my bloods back and it says that my magnesium is high so it can't be that. I have started taking Zinc so will see how i go with that.
The magnesium test is not reliable. It measures what is in the blood but doesn't tell you what is in other body tissues and organs.
Less than 1% of the body's magnesium is found in the blood, and the body will maintain a good level there by stealing it when necessary from other tissues.
So, the blood stream can have a healthy level of magnesium while the rest of the body is deficient.
You might find this link of interest, particularly in the section entitled "Distribution in the human body" :
I had RAI in 1983 but had to have 3 doses of it. I take thyroxine daily but I need the same brand every time or I am so very ill. See if the chemist can issue you with the same brand that you feel OK on rather than keep mixing them up see how you get on then. It takes a while to find the right dose.
I live in Greece and can get thyroxine, any brand without prescription, you're right, it sure takes time to find the right dose... that's what I'm working on. Are you feeling good now?
Not too bad much better than I have for a long time thanks. Hope you manage to get yourself sorted out soon
I reread yr. post and wondered about you having to have 3 doses of RAI!? I'm asking myself if that one dose I got wasn't sufficient and maybe I'm under the illusion my thyroid is gone but maybe it isn't??? if you have time, would be thankful for more info.
Hi Koola the consultant I had at the time explained to me that with an overactive autoimmune disease (thyroid) they need to estimate the amount of RI you need. My thyroid refused to co-operate. I had retests every 6 weeks before the 2nd dose and again for the 3rd dose. Each time the tests showed that it was still malfunctioning. He did say it was very unusual to need 3 doses. My mum had problems after me and she needed 2. I think it just depends on your own body as to what is needed .Are you still seeing aconsultant or have you been signed off? It may be worth asking yoyr GP for a referral again if you have so you can discuss it with them. Good luck
Hi Zeberdee2468, I had RAI done in 2009. Are you saying that I might still have a (sort of) functioning thyroid? But then how come all the hypo symptoms that started 5 years later?
Sorry I took so long to reply. Hope you'll be quicker...
I'm not doing well and been going downhill for the past 2 weeks & getting desperate for some viable "solution", or course to follow.
my RI was all done in the same year as all th tests showed it just didn't work for me at the time. It would be worth going back to see an endocrinologist in case something else is going on
Read your bio.Similar situation. Reach out any time! But newly thyroidless (2 years).
Graves’ disease with TED as well pre op.
Thanks, Meanbeannyc. Will do!
Reading your profile....are you on strictly gluten free diet
If not recommend you get coeliac blood test done BEFORE trialing strictly gluten free diet
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
healthcheckshop.co.uk/store...?
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
Hypo to hyper...
Hypo to Hyper
From Hyper to Hypo
Hyper to hypo
