I just wanted to say a massive thank you for the support I received from the numerous lovely people on this forum. I had been self medicating for years after struggling to get treated on the NHS and found a new private thyroid doctor off the list. A few of you voiced concerns that she had asked me to come off my NDT for 6 weeks to do testing and putting my health at risk. I really hit rock bottom with self doubt and I was in a really really dark place. I received some lovely messages of support which filled me with encouragement to go on and to trust myself and that I had been doing the right thing. some of you asked for an update when I had one so here it goes..
my latest results
TSH - 2.7
FT4 - 13 (12-22) 12% through ref range
FT3 - 3.6 (3.1-6.8) 13.51% through ref range
I know none of these are out of the reference range yet but the specialist strongly believed they soon would be if I didn’t get back on treatment promptly and she said these were strong enough to support treatment! I am also repeating the TSH early morning/fasting as these were done at 3pm to see if I can get an even higher reading in case the NHS ever question me in future.
I was given the option of levo or amour and I have chosen to go with amour. Does anyone have any positive/negative experiences with armour?
I was also hoping someone could remind me of the good folate supplements name? I am folate deficient!
thank you all again, I feel like I’m finally at the end of a 7 year nightmare and can maybe start a new chapter 😁
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Beau55
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The best folate supplement is methylfolate. There are lots of choices on Amazon or other supplement websites.
We really need to keep all the B vitamins at good levels, so we always suggest a good quality B Complex taken once a day too. The one often recommended is Thorne Research Basic B.
Once you have repaired your folate deficiency you could probably drop your folate supplement and just continue with the B Complex. But some people find it hard to maintain folate levels so you may need to keep taking a separate folate supplement fewer days of the week once your folate is optimal.
I would suggest buying a folate supplement of 1000 mcg per day since you are deficient.
Thanks humanbean! I will order the Thorne basic B and get started ASAP. I already get Vitamin B injections every ten weeks but the GP never tested my folate so I have been none the wiser I am deficient in folate and wonder how long I have been. How often would you say I need to test it after supplementing?
If you're going to take Thorne Basic B and a methylfolate supplement I would think every three months to begin with. But once you have a better idea about how well and how quickly you absorb it you could reduce that to an appropriate frequency for you.
You must be feeling dreadful with those results!You absolutely need correct treatment.... ASAP!
You've been on quite a roller coaster of treatments.
Both Frees are miserably low....they need to be approaching 75% through the reference range though this will vary a little.because we are all different.
Following your diagnostic/ first thyroid test were you medicated with levothyroxine
Do you have a copy of those first labs?
Was the consequent levo dose titrated until FT4 was close to the top of the range before you decided you were not responding well to levo
Did you then identify poor T4 to T3 conversion?
That is....High FT4 with FT3
Did you then optimise vit B12, vit D, folate and ferritin...essential to support thyroid function/ conversion
At this point did you add a small amount of T3 to your Levo?
Did you titrate T4/ T4 combo until you exhausted this possibility?
Sorry for all the questions but to find our therapeutic dose we must first "get all our ducks in a row"
Dosing is not a game of chance but with some medics it sometimes can feel like that!
Having your result somewhere within the ref range is not the aim....
Instead you need to find the point within the range where you feel well....that takes time
I'm surprised on this " new start" you have initially been offered levo or Armour...
Since 1 grain of Armour/NDT contains 38mcg T4 and 9 mcg T3 you may be introducing T3 before you need it.
I'm not against Armour ....just interested!
(I need high dose T3-only to function...took me years and much trial and error to reach my therapeutic dose....many of us have been in that dark place)
Sadly many of us have also been wrongly diagnosed and treated by medics....I self medicate!
How much Armour are you now taking?
Success will be when you find your correct dose and when you feel well.....so be patient.
Hopefully Armour provides the T4 and T3 balance you need, if so you could now be on the home straight!
Thanks for your help DippyDame, I remember it was your original post about CUTI that went off on a tangent about my experience that I was referencing in this post 😁
In terms of your questions I 100% see where you are coming from! I have never been on levo but the thyroid doctor did give me the choice. I was considering trialling it but at this point I just want to get well ASAP and had been put off by hearing others stories of not having full success on it. She said because I had previously taken NDT and had success it was probably wiser at this point to go with that (which made sense to me) but the difference in cost was very tempting!! She also mentioned that due to being poly cystic that my conversion rates would probably be impacted.
My last lot of bloods before this were while still on medication (a lower dose than when I felt well) -
FT4 - 17.6 (12-22) 56% through range
FT3 - 4.3 (3.1-6.8) 32.43 % through range
So potentially shows I wasn’t converting great do you think?
My starting dose of Armour she has said to take 1/2 grain in AM, 1/2 at 3pm. Then after a few weeks to increase to 1 grain AM and 1/2 at 3pm. Then wait 9 weeks for review and testing and go from there!
I really hope you are right about me being on the home straight 😁
Just to add that I am so pleased for you - coming out of the deep dark forest and beginning the climb up the hill to the sunshine and health. This forum is fantastic with the support and knowledge. Let us know how you get on.
Thanks Serenfach, I am delighted just to have a diagnosis after all this time, it feels like a miracle rather than being told I’m crazy. I can handle any symptoms as long as I know what I’m dealing with 😁
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