Graves unwell

[Ossuryak]

I'm new,Graves , radio active iodine in 2012 , have felt very unwell ever since . Take porcine in decided doses. Very unwell , having hot sweats , heart palpitations ,don't feel like eating. My levels TSH 1.3 (0.5 to6.0) , T4 10.5 (11.0 to 22.0) T3 4.8 (3.1 to 6.0) all with in range. .?

[greygoose]

Your FT4 isn't in-range. It's below range. How much NDT are you taking? It looks very much like you are under-medicated.

[pennyannie]

Hello Ossuryak

I too have Graves Disease, diagnosed in 2003 and had RAI in 2005. and I became very unwell in around 2013.

I was only ever dosed on Levothyroxine and only ever diagnosed with low ferritin, despite many horrible symptoms and called a conundrum by my doctor.

I found considerable help from a book written by Elaine Moore - Graves Disease A Practical Guide. This lady has the disease and drank RAI since she found no help herself in the late 1990s so wrote a book to help others. She now has a very comprehensive website, open to all of us to use. It's stateside so maybe some differences in medical protocol but an invaluable research and help platform.

Tired Thyroid by Barbara S Lougheed is another lady who found herself in the same predicament - she now has a blog, for ease of access.

Are you in the UK and under medical supervision for your current treatment of hypothyroidism.

What dose are you currently taking and do you have any other results, ranges and dose values to share with us, so we might be able to see a pattern emerge ?

It's not necessarily just being " in range " that matters but as to where your results are in the ranges in relation to each other.

If your symptoms have been " with you " since RAI could it be that NDT doesn't suit you and maybe you need to swop to a different source of thyroid hormone replacement ?

It is also necessary that for any thyroid hormone replacement to work effectively that your vitamins and minerals need to be optimal. The four most important building blocks to get checked out first are ferritin, folate, B12 and vitamin D.

Is it possible to arrange a full thyroid blood test to include TSH, T3, T4, plus antibodies and the above vitamins and minerals. Then with this information people more able than me will be able to advise of your next step. Your doctor may help you undertake he above but if not there are companies you can use yourself as detailed on this amazing website.

Graves is an autoimmune disease and as such your have it for life, it's in your blood / DNA.

The antibodies attack the thyroid, so medics believe if they remove or destroy this major gland, the target that's being attacked that they remove the Graves - well I don't think it's as simply as that, is it.

Statement not a question, as we are all a work in progress, dealing with an auto immune condition that seems to be poorly understood within mainstream Nhs medicine.

But thanks to this site I'm finding myself improving, self medicating with NDT and help is here, so let's start with more details of your bloods, especially the vitamins and minerals as detailed above where upon people more able than me will advise you accordingly.

[Ossuryak in reply to pennyannie]

Thank you for your reply. I feel a lot better at the moment , I've changed my natural thyroid hormone dose,I cut it back and added more T4 ,it has stopped my heart palpitations .At this point in time it seems to be working.

[pennyannie in reply to Ossuryak]

Oh, that's interesting, what are you taking and how much ? -

I'm 6 month into self medicating with NDT and fingers crossed doing ok.

It's given me a level of stability and my confidence is coming back again. I seem more able , my brain is back and my concentration is greatly improved. I take my NDT at around 4-5 in the morning, at a bathroom break, easily fall back into sleep and wake a couple hours later relaxed and calm.

On monotherapy with Levothyroxine I would wake up anxious.

The only difference has to be the T3 in the NDT -

I felt the same when I trialled the T3 actual hormone liothyronine but messed up and frightened myself, it had the same calming effect on the low dose, but I wrongly, dosed up, when I should have stayed put.

However I do prefer NDT - it seems softer - like putting on a pair of slippers rather than a pair of high heel shoes two sizes too small, and currently, it is easy to purchase and at a very good price.

[Ossuryak in reply to pennyannie]

Hi me again, I am in Australia so thyroid medication may not be the same nor test results. Just let you know a few things I do. I take 32 mg of natural thyroid hormone at 8.00am ,25mg T4 at12.30pm, 25mg T4 at 5.00pm, and 32mg natural thyroid hormone at 10.00pm , a total of 112mg for the day . The reason i devide my dose is because T3 only lasts for 4hours then you feel flat and also if i take 112mg all in one dose it puts too much pressure on my heart and my heart starts jumping allover the place and i feel unwell. I do not have a thyroid gland as I had Radio active iodine to burn it out, not the smartest thing I have ever done , I stupidly took my Endos advice when I knew nothing about thyroid, now I don't trust any doctor ,they don't seem to know how to treat thyroid and I question any advice a doctor gives me now. Well a few things I find helpful, fresh orange juice first thing in morning as soon as you get out of bed it keeps glycogen level up as thyroid people's liver can not store glycogen so I drink orange juice first thing, then make sure I eat fruit every 2 hours during day ,also eat egg morning and evening as high quality protein at least twice a day is vital ,carrot juice and some carbohydrate ,banana or slice grain bread with butter or coconut oil . Fruit , protein, carbohydrate, coconut oil or butter all play a part to keep your sugar, protein and hormone levels normal also cortisol is highest at 8.00am and that can make you feel bad. I take zinc,selenium,magnesium,vite E,C,D3,K2,B12,B complex,Taurine and a few others but they are the lot I would not go without. Wishing you well.

[pennyannie in reply to Ossuryak]

Hey there, or should I say " goodayee Sheilaghhh ? !!!

Thank you for getting back so quickly.

That is interesting, what is the ratio breakdown T3 to T4 in your natural thyroid hormone ? Are you a DIY or do you have someone with some medical knowledge supporting you ?

I seem to be doing ok on just 1+1/2 NDT with the breakdown being 57 T4 + 13.5 T3.

and I just take it all at around 4-5 am. I was virtually housebound these past few years, so am trying to build up my stamina again, but at 72, maybe the little slump in the pm is ok ? I have my brain back, and hoping my body might catch up !

Yes, I too had RAI back in 2005, details on my profile, and feel exactly the same as you. It's a massive learning curve realising that you are not "cured " but in fact, in my case, worse off many years later after having drunk this toxic substance, and found no help, understanding, or accountability, and just the mention of Graves Disease and RAI leaving you with no answers from the medical profession.

I'm taking adrenal support ( NAX ), along with additional C and D + MK7-K2, and a B complex. I supplement my ferritin eating whizzed down chicken livers, and now eat a pretty normal balanced food choice, and seem to be ok with this, though no gluten, more through choice than through need.

Thanks goodness for this amazing site and the Elaine Moore book, just hope I can try to help others in the maize of medical jargon and misinformation that seems to surround us when we mention Graves Disease let alone RAI treatment.!!

[Ossuryak in reply to pennyannie]

I just wrote you a reply and some how wiped it ,alittle cross with myself I don't write much as I don't have time ,well I'll have to start again. Natural thyroid hormone T4 is 4mcg toT3 1mcg but the compounding pharmacy I use said it can vary a lot ,not good news to me ,that could be why i feel off at times. I am also 72 have a property in Adelaide Hills where I look after rescued animals so I do a lot of physical work , I carnt work as hard these days could be old age and sometimes I just feel unwell.You asked if I am DIY , Yes in a way i get my scripts from my GP but they seem to let me play with the amounts ,so far so good. I have read that aerobic exercise is not good for thyroid people, it takes the stress hormones up too high and they said slow walkig was much better ,dont know what you think but i will not push myself ,makes my heart jump around so i just go at a steady pace.Hope you can physically do what you want to and keep improving.

[pennyannie in reply to Ossuryak]

So ok, the ratio in your NDT is 4/1 which seems to be pretty much standard, but am a bit concerned that your pharmacist acknowledges that " it can vary a lot " ??

This surely can't be acceptable, it might sound silly, reading of where you live, but, is there another chemist who can quantify and compound accurately ?

This is extremely important, you need to be able to rely and trust this medication to give you the stability of hormones you have lost, T3 is very strong and the measure must be exact, every time, otherwise how do you know where you are in all this ?

So, anyway, you take 2 compounded tablets @ 32 each daily, so 64, and that breakdowns to 48 T4 plus 16 T3 - not far off from where I am - and then you

also top up with 50 T4 bringing your totals to 98 T4 and 16 T3.

I don't think we should be looking to the blood tests to find the answers, since it looks as though you are under medicated, though you feel as though you maybe over medicated. I think this is common in Graves people, and I think you need to dose to symptoms, but it's all trial and error, and I'm still with " L plates " .

I have read of people on NDT topping up their T4 to around 100 T4. whilst attempting to keep their T3 at around 10 thereby to mimic normal, human gland daily production.

The fixed ratio in NDT of 4/1 is much higher than that of a humans and I understand the theory of adding back in some T4 to more replicate the human glands production.

This is well explained in Tired Thyroid book and blog by Barbara S Lougheed.

However I also read that NDT is not to be dosed to fit into the " blood tests " which were introduced along with the Levothyroxine in the 1960's as a package on how to treat hypothyroidism in the 21st century ?

NDT had been used for over 100 years, and it was left to the patient to treat themselves and to dose to the relief of systems, and as I understand things it worked then, and it works in 2019, but sadly not covered in medical school.

Years ago there were no blood tests, let alone the thought that you must compare oneself to well people who haven't had their insides burnt out by drinking Radio Active Iodine and been "nuked " .

Where are the guidelines Graves patients after RAI ?

I also read that some Graves patients may still have active TSI antibodies that can interact with NDT and therefore they should switch to synthetic T3 + T4.

I have also read that it is easier to find your ideal ratio by taking synthetics as you can adjust both the T3 and T4 independently.

Sorry, I've gone on a bit of " rant " -

[jamesal0 in reply to Ossuryak]

Hi Ossuryak I'm in Canberra. Like you I split my NDT up 3 ways each day. I take my first 30mg or 60mg (depending how I feel) at 2-3am when I get up for a wee. I always take it with food. Banana and Milk or yogurt - it takes the edge off it and prolongs the effects. My thoughts on your heart palps is you are taking too much if you get them. Don't worry about your TSH etc just use your symptoms to drive NDT. Use the heart palps as a guide, take just enough to edge up onto them in a mild sense. Watch you temp 3-4 times per day it will be low in the mornings and come up around lunch. Get lots of water NDT dehydrates you. If your'e eating well, all the extra vitamins are just hard work for your kidneys. B12 would be all I would supplement (as a 3monthly jab from GP) plus anything blood tests identify.

[Ossuryak in reply to jamesal0]

Hi, why do you take NDT at 2-3 am, is there some good reason for this ? I do not think aerobic exercise is good for older people with thyroid personally ,long slow walks ,you could look up Tom Brimeyer research on this exercise and thyroid if you would like.

[jamesal0 in reply to Ossuryak]

Hi Ossuryak. Adrenal system kicks in at that time of day and it really likes T3. stopthethyroidmadness.com/t...

I beg to differ on exercise. We are animals that evolved climbing trees and chasing our food down etc. When you stop exercising you get bone density problems, bad backs, loose cartilage, muscle wastage, bla bla. We all should be doing alot more. And besides if you are properly medicated you don't really have a thyroid issue ?

[jamesal0 in reply to pennyannie]

Nice analogy (slippers) and I agree with you its a much nicer, more natural drug.

PS - aerobic exercise is very good for you. Jog/swim/weight train for an hour a day every day. Keeps the kidneys working, joints strong and bones dense...

[pennyannie in reply to jamesal0]

Currently I manage to walk out most days around the village in Cornwall where I live. I am not good in the sun, so if we get any summer, I'm more on the sofa than I would like.

If I did an hour of any exercise, even walking, I'd be " floored " and negatively impacted.

I know I've a slow build in front of me, it's a balance, like everything, I wish I had your stamina and obvious level of wellness.

[jamesal0 in reply to pennyannie]

I read your earlier post "rant" You sound like you know your stuff but you say you are flawed by exercise. Are you driving your NDT by symptoms or bloods. Are you optimally dosed. If you are you will get some sort of side effects, "mild heart palps,hair feels like it is standing on end, slight headache, slight sweats" for 20 minutes after taking NDT.

On optimal NDT you will have a depth in your lungs - you dont get puffed climbing 4 flights of stairs, need hair cuts more often, cuts heal well, skin is tough and dosn't get as many nicks and cuts when gardening, you tan in the sun. Now I'm ranting

[pennyannie in reply to jamesal0]

I am taking NDT for the relief of my symptoms and not relying on blood tests.

I purchase my NDT from Thailand.

I'm self medicating and am 5 months in and still wearing my " L plates " .

I'm sorry but I don't believe when optimal medicated one should be experiencing any of the symptoms you mention, and, excuse me but I would suggest that maybe you are over medicated.

[Redditch in reply to pennyannie]

Have you had your vitamin D checked? You need a vitamin D of around 100 to be adequately absorbing any medication you're taking and your symptoms sound to me like you may be deficient ( in vitamin D ) especially as you are a sun avoider..

I found an interesting thing when I was first taking NDT.

I went to the gym every morning and every morning I took either NDT or vitamin D before I went, never both.

On NDT mornings I had more puff to run faster but had to have a nap when I got home

On Vitamin D mornings I had no puff for running fast but had more stamina.

I was low on both at the time...

I would say, when you're optimally dosed on Vitamin D and NDT it will all go away.

I was diagnosed in 2013, and now I mostly manage very well. I take 5000 i.U of vitamin D3 in the winter months and 1000 I.U in the summer months to keep my blood level around 100

I now take 4 grains of NDT and have the stamina and puff to walk my dogs twice a day.. 2miles in the morning and a mile in the evening, as well as gardening and housework.

I have given up the gym though, that's stupid if you have a thyroid issue, you need all your energy for life.

[pennyannie in reply to Redditch]

I think my sun sensitivity is mainly because of the thyroid eye disease I developed after having the RAI treatment and is bound up with my general feelings of heat intolerance which is a common problem when you have a faulty thermostat, and your thyroid is playing up, giving you either hyper or hypo symptoms.

Now, after treatment with RAI I have been made hypothyroid ( as my thyroid has been burnt out ) but I still live with some Graves symptoms, one of which is heat intolerance.

Yes, I supplement vitamins B12 and D, along with folate and ferritin.

I'd like to think that one day I wouldn't be phased by the walks you describe.

My ideal walk is on the flat, on a cloudy, dull day, preferably in the rain !!!

As for the gym, well, I wear the " bottoms " - and yes, I save my energy for just what normal people take for granted, like the housework, gardening and more leisurely workouts.

[Ossuryak in reply to pennyannie]

Hi, what about your heart have you had a 4 day heart monitor and ultrasound done? I do but will not do stress test . I take L-carnitine, COQ10,magnesium,taurine,250mg vite E,ArJuna, for my heart. Heat intolerance. I get up at 5.00am in summer time to do all outside work and come in before it gets too hot, then during the day I'll go out for very short time to water and see if everyone is ok. ,then I have to come inside sit in front of air conditioner to COOL DOWN QUICKLY and get my heart rate down before I can go again. Have you heard of Forefront Health ( Tom Brimeyer) he is a health practitioner has had thyroid condition and many years research ,he has diet , exercise, supplements and can be contacted by email.Hope it's a good day.

[pennyannie in reply to Ossuryak]

Hey there and thanks for the details - as far as I'm aware my heart is ok.

I take my blood pressure and temperature and I'm pretty stable.

Yes, heat intolerance is a common issue.

My vitamin D is optimal as are my ferritin, folate, and B12.

I shall take a look at Forefront Health -

It's a slow build but at least we are going in the right direction, and the blips in the road are more easily sorted the more we share and learn from each other.