A Success Story: Good afternoon one and all! I... - Thyroid UK

Thyroid UK

140,290 members165,016 posts

A Success Story

sheenah profile image
23 Replies

Good afternoon one and all!

I thought it was about time I let you know about my success story. First, I must say that it is because of this site that I am well - without the knowledge and friendship I found here I honestly do not know where I would be now.

I am now 62, and have had weight issues all my life, always suspecting thyroid probs, but always being told that my results were the "N" word.......normal. At Christmas 2013, I just went downhill, couldn't stay awake, piled on weight where I had been the same weight for years - yeah, still overweight, but the same weight. I had most of the symptoms, as I later found out, particularly uncomfortable one was a psoriasis that was on my palms.

I went to the Docs and gave him a list of my symptoms. He asked if there were thyroid issues in my family, and the light went on. I had the blood test, and guess what - normal. I was so upset I went on a search and found Thyroid Uk, and that was the best thing I could have done. I insisted on more blood tests, which were not allowed, so did my own privately very early in the morning and Bingo - there it was TSH over 5. I got Doc Peatfields book and read it from front to cover. There and then I decided that I was not going the synthetic route with Levo, and I wanted the real deal with NDT. To begin that process I went to see the Doc in Winchester, and he prescribed an initial dose which had an immediate effect. He doubled that dose after a couple of months, and then I wrote a lengthy letter to my GP, explaining why I wanted NDT and he prescribed it!!!!!!! I have experimented with the dose and now find that 2 1/2 (and a half) grains seems to suit me best - anything over that I start to get a fine tremble. I take it as I get into bed at night. Touch wood, I am well, the weight has evened out, the brain fog has gone, the hair has mostly returned, and the very nasty "palmoplanter pustulosis" which a dermotoligist (skin person) told me last Christmas that I would have to live with, has all but gone too. So I suppose it has taken me approximately 18 months to get this far into recovery - the thought of feeling like that for the rest of my life was like looking at a prison sentance. Don't give up hope - just get determined!!

Lots of Love to all

Sheenah xxxxx

Written by
sheenah profile image
sheenah
To view profiles and participate in discussions please or .
Read more about...
23 Replies
nightingale-56 profile image
nightingale-56

So pleased for you Sheena. Hope you stay well.

Well done. So the moral of the story is: you have to diagnose yourself; find the relevant tests and test yourself; identify the correct treatment and fight to get it prescribed; and, finally, monitor yourself.

sheenah profile image
sheenah in reply to

In a nutshell - looks like it!! xx

Heloise profile image
Heloise

Thank you for giving hope to many others, Sheenah. You showed what it takes and luckily you found a doctor to prescribe; I'm not sure others are so fortunate.

shaws profile image
shawsAdministrator

Sheenah

That's great news and an impetus to others still struggling that, eventually, a recovery could be on the horizon. Of course, ideally we would like doctors to prescribe whatever suits us best and to take into consideration our awful symptoms but that wont happen yet due to the guidelines. We can always hope for a compassionate change to them. What must be an achievement for any doctor is that they have the capability of achieving the wellbeing and recovery of their patient rather than years of ill-health plus the possibility of the development of other more serious diseases.

Best wishes

Dollychris profile image
Dollychris

am so pleased for you Sheenah. I have just posted for advice on tackling my GP to get appropriate testing and medication so found your post uplifting. I am 60 and over 4 yrs later still am not sorted. I think I may have to take the same route as others if my GP won't listen this time and self medicate. Is not fair that we should have to consider this when our GP's could be prescribing and monitoring more safely.

Hope you continue to feel as well as you do now and thank you for sharing such good news! xx

Marz profile image
Marz

Great to read of your recovery....but good for you for hanging in there and battling your way through. Glad there are some helpful Docs out there :-)

Good Health is Wealth :-)

fixit profile image
fixit

Great to hear of your continued success Sheenah. Good news. I'm pleased for you x

Clutter profile image
Clutter

Well done, Sheenah. Taking charge has certainly paid off for you.

HarryE profile image
HarryE

Hey honey, was just thinking about you yesterday! So glad to hear of your improvements xx

Oh Sheenah, thank you so much for this encouraging post. I feel I have had a thyroid problem for many years and never getting an answer with a "normal" TSH of over 5.7. along with symptoms and also a lot of weight gain despite eating healthily. Being told by every dr to go away and lose weight. Hitting my head on a wall with it all. I have had several different diagnosis for things and due to see weight clinic who GP referred me to this week and who seem to speak of bariatric surgery a lot even though I have said I am definitely not having surgery. I got some NDT a couple of months ago and have been worried about taking it but your post is most encouraging. some days I feel like giving up because I feel no one believes me but now I know there is hope even if it takes a while I may get some of my old self back. So happy this worked for you. Thank you. Gentle hugs Joolz.x

galathea profile image
galathea in reply to

With a tsh of more than 5, why are you worried about taking medication? You can't feel any worse than you do now.

Trick is to monitor your temps and raise slowly. Holding each alf grain increase for a few weeks before raising.

G x

in reply to galathea

Thank you galathea. I am a little unsure of how to take them as someone told me to take qtr grain morning and eve and then up by qrt grain each week until feeling better. Then I read someone tell someone else another way so got confused (it doesnt take much to confuse me). To be honest I tried cutting a grain in qrt and ended up with dust. Joolz.x

galathea profile image
galathea in reply to

Its not speed, you aren't going to suddenly start break dancing or anything. :-).

I grain is reckoned to equal to some where between 80 and 100 of levothyroxine. A starting dose of levo is between 25 and 100mg. According to the British national formulary.

---------------

ADULT over 18 years, initially 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication, adjusted in steps of 25–50 micrograms every 3–4 weeks according to response (usual maintenance dose 100–200 micrograms once daily); in cardiac disease, severe hypothyroidism, and patients over 50 years, initially 25 micrograms once daily, adjusted in steps of 25 micrograms every 4 weeks according to response (usual maintenance dose 50–200 micrograms once daily); CHILD under 18 years see BNF for Children (section 6.2.1)

----------------------------

I would start on half a grain, hold it for a couple of weeks then take another half, hold it for a month. Keep on like this till you get to 2 grains.... Then up by a quarter grain every 4 or 5 weeks till you feel well,

The t3 in NDT is said to be bound, not free so it makes it slower to release. I take all mine at once. 3 grains, last thing at night. I used to take t3 and had to multi dose that, but not so the. NDT.

Good luck.

G x

in reply to galathea

Thank you so much G. Gentle hugs Joolz.x

chickenmitch profile image
chickenmitch

This gives us all hope. So happy for you Sheenah. And thanks for giving me a reason to continue my quest xx

lucylocks profile image
lucylocks

That's great news Sheenah,

It is always good to hear a success story, it really does give hope to others.

Musicmonkey profile image
Musicmonkey

So pleased to read this post Sheenah. Well done for sorting yourself out.

I wondered whether you also had to raise your supplements or whether you are just medicating with NDT?

Lizzy1606 profile image
Lizzy1606

Well done ,thanks for sharing it gives us all hope.

MaxiFrustrated profile image
MaxiFrustrated

Bravo Sheenah

I'm following along the same path and hope I too can soon share a success story. After two years of faffing around and waiting and monitoring and waiting for more tests and appointments etc, I've taken the plunge and am starting my seventh week of NDT ("Thiyroid"). Started on a half grain and as per the advice on here and STTM, am raising it by quarters. So far so fine.

And I just postponed by three months yet another appointment with an endo who speaks in TSH only. What's the point of going through that frustrating experience yet again, only to hear her say all is normal and blah blah blah?

I too am taking it in one go at night to avoid conflict with morning caffeine and bio-identical HRT.

Your story makes me feel even better for trusting in what I have learned from all you fine folk here and from deep consults with Dr Google.

Thanks so much for sharing and long may it continue.

xx

Klagh profile image
Klagh

I am very happy for you!! I am 60, with Hashimoto's for 15 years, tried NDT for 13 years but couldn't get NDT to work for me. Now I'm taking 35 mcg of T3 (liothyronine) daily in 3 split doses. I take it in split doses because I finally figured out that T3 (or ANY medicine) only lasts 4 hours in my system. I have read many places that 4-5 hours is the half life of T3 in the system. MY QUESTION IS: for everyone who says NDT works so well for them, is the T3 lasting much longer for them in their system? Or does the T3 in the NDT kick off the T4 to T3 conversion process, and then after 4-5 hours, their systems keep converting?

Thank you Sheenah need to hear that today of all days! So happy for you!

Seashore100 profile image
Seashore100

Hello, i know this is old but i have a few questions if possible. I'm so pleased for you & I want to feel well also. I wanted to know why you chose ndt not synthetic and what brand ndt (is it armour?) Although I know different medications suit different people. I'm vegetarian so wanted to avoid ndt but I really want to feel better. My second question is when did you experience hair loss, was it upon beginning your medication or upon the onset of your other symptoms at Christmas.

Many thanks

Not what you're looking for?

You may also like...

Success Thyroid Story

Hi! I promised myself that I would come back and write here if I managed to "naturally" put my...

Success on NDT

Today's results: TSH 0.31 T3 6.3 T4 12.9 I just want to share my good news. I first...

My Story

I’m a 71 year old male in the USA. I was diagnosed with hashimotos about 8 years ago.  My TPO...

Puzzling Results

I am puzzled about my latest results and need some help. I am 77 and was diagnosed with...

Lorraine Cleaver's story

This has been posted in the past but thought it would be helpful for others who're struggling. If...