I am sure there are plenty of us out there who have been feeling lethargic, achy and just downright depressed? i know that I was, luckily my mum had already been diagnosed with an under active thyroid and was on levothyroxene so when I saw my doctor, my mum had asked me to get my thyroid checked, they said it was normal, so I went on my way still feeling down, tired, achy etc. 6 month later I went back, had some more bloods done and finally my TSH level was borderline, so my doctor started me off on 25mg of levothyoxene, i came home with some leaflets explaining my thyroid (not that I understood any of it) I started taking my pills everyday which was quite a feat as my memory is atrocious lol anyway 3 months later felt bad again, went for more blood and was put up to 50mg, always trusting my doctor was right i didnt question anything and just took my pills.
Roll on 3 years later, i was feeling awful but had started to google my symptoms, I found websites such as http://www.stopthethyroidmadness.com/ which had lots of resources from a different treatment instead of leveothyroxene (T4) to vitamins that should be taken and checking iron, vit d and vit b12 levels to make sure they are optimal. I found out that levo (T4 is actually a storage hormone, our body's are meant to convert the T4 into t3 but it doesnt always work that way and nowadays most labs will not test your T3 so you wont have any idea its not working. My labs only test T4 and TSH so i couldnt find out. I alo found other like minded people all in the same boat as me that were suffering the same symptoms but doctors were telling them they had chronic fatigue, depression etc
I was feeling lousy at this point, tired at 4pm, heavy weight on me, couldnt do anything, couldnt remember things, lost my words, couldnt plan, found it hard to sleep, couldnt wake up etc so the doctor did my bloods, told me i may have chronic fatigue! I just assumed i needed a higher dose of levo. I received my bloods back and my iron was pretty low, ferritin being 11 - so my doctor prescribed iron pills to be taken daily. i had a print out of my blood and brought them home to study (1st rule of getting yourself better, get a copy of your bloods) I was told my thryoid levels were fine but i didnt feel FINE.
my natural Dessicated thryoid tablets called Thiroyd from Greater Pharma in Thailand this is made from desiccated porcine (pig) thyroid glands which contain Thyroxine (T4), T3, T2, T1 and Calcitonin.
In the meantime, I had been a bit adventurous and ordered myself some NDT natural Dessicated Thryoid, its been around for a long time, way before thyroxene was made and given out to us. i had read up on google and joined some great online support groups, this being my favourite https://www.facebook.com/groups/FTPOUKandEurope/ there are groups for every country so if you are not europe or the uk please search for FTPO on facebook and join one. I realised I could take my health into my own hands and that the doctor just did not have the information and enough training to see my fatigue etc was connected to my thyroid. the day I got home from the doctors I stopped levothyroxone and started taking my NDT, i started with 1 grain, I split it into half and took one in the morning and one in the afternoon, i realised i needed to make sure my iron, b12 and vit d were at optimal levels, not in doctors ranges when they say they are fine as their ranges are huge, you can be right at the bottom of the range and they will say you are normal!? anyway i checked my b12 and realised it was 266, optimal is at least 800-900, in countries such as Japan they treat you as low as 500 but here in the uk, as long as you are above 150 they dont think you need help, yet the symptoms of low b12 are lack of energy, lack of motorskills, brainfog etc so quite scary and everyone should get this checked if they fill tired, confused etc. So i went online and ordered myself some B12 pills, i made sure they had Methylcobalamin in instead of Cyanocobalamin as they are a better form of b12 and easier/quicker to absorb. I also started taking my iron pills along with a vitamin c pill to help absorb. Another thing i learnt was that if you have a thyroid problem you are more likely to suffer from low stomach acid this in turn stops you absorbing vitamins very well, so even if like me you eat alot of greens and red meat, you still wont be absorbing all the goodness you need. Something to help that is apple cider vinegar a spoonful in a glass of water a day will really help absorbtion levels.I now take 1 pill every day, luckily b12 is water soluble so you cannot overdose on them. i will get to 800 and lower my doseage. Also adrenals and cortisol play an important role in taking NDT, we have all probably stressed out levels out, a 24 hour saliva test only available privately should help give you those results so you can work on them
these are the vitamin b12 pills that i am taking visit amazon to buy
By day 3 on NDT I realised at 8pm that I hadnt felt my usual fatigue and was feeling rather fab! yeah!! wow its a miracle i thought. by 10 day i was feeling a little tired again, so i upped my dose to 1 and a half grains, spilt into 1 in the morning and half in the afternoon, i felt better immediately. This carried on and i upped again to 2 grains on day 21. i continued this way and ended up on 3 grains but felt a little achy, tired again and a slightly fast heartbeat so have gone back down to 2 and a half grains where i will stay for a while. i may be at my optimal level but i may also be suffering from my low iron which is taking its time to come up, last bloods i was 23. i have since ordered some better iron pills, easier on the digestion, stomach etc less constipation. They are called Bluebonnet Chelated iron and are very popular.
So I am now on day 95, still on 2 and a half grains, just had my first thyroid bloods done at my doctors, i had warned him that my TSH maybe surpressed as I had stopped levo and started on NDT, he didnt really think it was a good idea but asked me how i felt, i said i felt amazing! so much better, i gave him a list of symptoms i had on levo and i showed him how much better they were, most have gone completely. He was very supportive, even tried to prescribe NDT to me himself but couldnt find it on his system, i know a few people that get if off the NHS - the american Armour and Nature Thyroid can both be prescribed if you find a doctor in the know, along with the synthetic version of T3 which can also be of benefit, as long as you can find the doctor that has an open mind.
my results were
T4 - 11 (new range of 7-17)
T3 - 6.4 (3.5-6.5)
TSH - 0.15
I was very happy with those, all in range and my tsh supressed, the lowest its been, the last result on levo was 1.9
Here is the chart I showed my doctor, showing all the symptoms I had on levo and how they have improved:
levo
|
NDT after 70 days
|
Hard to sleep, awake till 3am
|
Sleep
before midnight usually
|
Miserable/depressed
|
happy
|
Hated waking up, felt so tired, 11am ish
|
Wake
up like a lark by 8.30am
|
Woke up with anxiety
|
Wake
up happy ready for the day
|
Exhausted in chair by 4pm, felt like heavy lead
|
No
exhaustion, keep going till bed time
|
Couldn’t lose weight/lost some with lots of excerise
but couldn’t lose the last stone. Body fat at 40%
|
Losing
it by the pound a week without exercise, body fat down to 37%, no diet or
exercise needed
|
Forgetful, couldn’t think of words
|
Having
normal conversations again
|
Couldn’t plan ahead, dreaded planning or thought of
planning
|
Planned
my friends 40th, my own party and others
|
Hated leaving the house
|
Love
going out and want to be out
|
Skin all dry
|
Skin
so much softer
|
Periods really heavy and painful
|
Still
heavy but less painful
|
Psychotic rages, angry at a drop of a hat,
|
Happy,
chilled and haven’t flipped since NDT
|
No sexdrive
|
Its
back!!
|
Aches and pains
|
No
aches and pains
|
Bleak outlook
|
Positive
outlook
|
Bloated a lot – stomach sticking out, wind causing
problems
|
No bloating, tummy has gone down, less wind
|
Cold extremities, feet and
hands freezing
|
Warm
warm warm! Temp is 37.1 in mouth all day – yeah!
|
Restless legs syndrome
|
Legs
have been fine, no restlessness as yet
|
Some Blurred
vision
|
Eyesight
fine
|
So 95 days and I feel good, i still have my ups and downs, but my temperature is a steady 37.1 and i feel so much warmer, i wake up when my alarm goes off, i go to sleep alot earlier, i dont flag half way through the day and i want to go out and do things whereas i hated leaving the house on levo. i feel levo turned me into a psychotic fat zombie, now i feel good, have even lost 7lbs not doing a silly diet or any keepfit dvd's. I am happy and would never touch levothyroxene again.
I hope that my story can help others find their way, maybe question your doctor a littl, visit some groups, find support from others in the same boat and give you some hope that there is a better way and you maybe able to get that normal life you are craving!
some handy tips
- get a print out of your bloods - or write them down with ranges
- get iron, b12 and vit d tested, optimal levels are ferritin 80, b12 800 and vit d 50, if lower then supplement, they all have symptoms similar to hyperthyroidism, lethargic, brainfog etc
- ask you doctor for t3 or NDT if levo isnt working for you, worth a try
- if you are really not feeling well on levo and nothing has worked so far, ask to be referred to an endo at your local hospital, if that hasnt worked, think about trying NDT
- dont be afraid to try something new, if you have been ill for 20 years on levo, then try NDT
- when starting NDT raise slow and take it easy, some signs of being lethargic, achy etc can come back but sometimes its because you are on too high a dose, don't be agfraid to drop down a grain to see if you feel better
- if you have been prescribed NDT by a doctor, be careful that he doesnt leave you on too low a dose, you need to raise by half a grain every 2 weeks ish.
- remember that you are not alone, millions of people suffer this condition every day, there is hope ok x
- if you have haven not been able to get iron, b12 and vit d tested, tell doc, you are tired, lethargic, confused and cannot remember things, that should speed it along
- if the doctor says you are depressed, dont listen to him you know that you are only depressed because you are too tired and panicky to actually accomplish anything!
- no you havent got chronic fatigue and yes its your thyroid - even if the doc does not agree lol
please visit the below links for more info
Dosing NDT - http://www.stopthethyroidmadness.com/natural-thyroid-101/
Stop the Thryroid Madness - http://www.stopthethyroidmadness.com/
Uk and Europe Thyroid support group https://www.facebook.com/groups/FTPOUKandEurope/?ref=bookmarks
Getting your ducks in a row http://www.stopthethyroidmadness.com/ducks-in-a-row/
NDT not working, try these http://www.stopthethyroidmadness.com/mistakes-patients-make/
which brand of NDT, compare here http://www.stopthethyroidmadness.com/armour-vs-other-brands/
adrenals and cortisol http://www.tiredthyroid.com/hc.html
adrenal stress test http://www.smartnutrition.co.uk/health-tests/adrenal-stress-test/
more adrenal help http://www.stopthethyroidmadness.com/adrenal-info/
private adrenal and thyroid tests http://www.thyroiduk.org.uk/tuk/testing/genova.html
levothyroxene side affects http://www.nhs.uk/medicine-guides/pages/MedicineSideEffects.aspx?condition=Thyroid+problems&medicine=Levothyroxine+sodium&preparation=Levothyroxine+sodium+100microgram+tablets
B12 info, which is best http://www.dadamo.com/B2blogs/blogs/index.php/2004/02/07/cyanocobalamin-versus-methylcobalamin?blog=27
stop the thyroid madness facebook page https://www.facebook.com/StoptheThyroidMadness?fref=nf
Handy FTPO groups
- FTPO Thyroid Topics - https://www.facebook.com/groups/FTPOThyroid/
- FTPO Adrenals - https://www.facebook.com/groups/FTPOAdrenals/
- FTPO T3 - https://www.facebook.com/groups/FTPOT3Discussion/
- FTPO Without a Thyroid - https://www.facebook.com/groups/FTPOWithoutAThyroid/
- FTPO Gluten & Gut Issues - https://www.facebook.com/groups/FTPOGluten/
- FTPO Hypo Children - https://www.facebook.com/groups/FTPOCHILDRENS/
- FTPO Sex Hormones -https://www.facebook.com/groups/FTPOSexHormonesRealGroup/
- FTPO Canada - https://www.facebook.com/groups/FTPOCanada/
- FTPO UK & Europe - https://www.facebook.com/groups/FTPOUKandEurope/
- FTPO Australia - https://www.facebook.com/groups/FTPOAustralia/
- FTPO Chat - https://www.facebook.com/groups/FTPOofficialCHATGROUP/
- FTPO Spanish - https://www.facebook.com/groups/FTPOSpanish/
- FTPO Lyme Disease - https://www.facebook.com/groups/FTPOLymeDisease/
a really good book to buy is Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment, its a great read with lots of handy tips
Disclaimer - I am not a doctor, this story is my own personal mission to get myself well, please do not take anything i have said as FACT and please if you are going down the NDT route, read up, explore and read again.
