I have been slowly titrating Metavive ll up and I’m now taking 320g daily. I have been very up and down - suddenly feel the return of some symptoms then just as quickly I’m feeling fine again. Mostly I am free of the debilitating fibromyalgia and my hair isn’t falling out in clumps. I have developed eye problems which may or may not be TED but although urgent appointment requested I have been told it will not be this year. Ditto my endo appointment which I have been waiting for since February. Since I have never been referred to endocrinology in the 30-odd years since I was diagnosed with Graves and had 85% of my thyroid removed I’m not too concerned that I’m missing out.
I am attaching my latest results from NHS - just TSH and T4 as per usual and my recent Medichecks Advanced Thyroid results. The GP wants to see me about the low TSH and the Medichecks doctor recommends it too. I have absolutely no idea what is going on. Generally I’m feeling pretty well but I currently have a heart monitor on for 14 days due to developing atrial fibrillation. This started at the beginning of the year but I only went to the doctor in September. My eye problems are not improving. I feel like I am in limbo and when I finally get to see a health professional they will not understand what’s going on. Medichecks also noticed I am low on folate. I stopped taking it as there was a good amount in the B complex I take but I’ve now ordered the Jarrow one again. I take 10000iu D3+K2, B12 (methylcobalamin) plus B complex and Mega Magnesium from British supplements. however my levels don’t look that great.
If anyone can help me unravel what’s going on I would be so grateful x
Written by
northsix
To view profiles and participate in discussions please or .
I don't know if it's just me - but I can't read your Medichecks report other than the antibodies section -
I can 't see the NHS thyroid blood test result either :
Taking Metavive will contain an unspecified and likely differing amount of T3 and T4 thyroid hormones from batch to batch - which may explain your up & down - changing symptoms -
Your TSH may well be low suppressed - but this does not matter - what does matter is your level of T3 and T4 :
So did you have a hemi-thyroidectomy for your Graves ?
I'm so sorry you are having to wait so long to see a NHS endocrinolost.
If using any OTC or even NHS prescribed eye drops and ointments - please ensure all are Preservative Free :
Maybe take a look at the Thyroid Eye Disease Charitable trust - tedct.org.uk
as they can signpost you to specialist eye units, generally attached to the large teaching hospitals throughout the country where an ophthalmologist and endocrinologist with an interest in Graves work together to find the best treatment options for their patients
Very important to also maintain your core strength vitamins and minerals at optimal - especially those of ferrtin, folate, B12 and vitamin D - are they also on this Medichecks print out -
Can you type all the Medichecks results and ranges in - unless it's just me - today ??
I found the most well rounded of all I researched for Graves Disease is that of Elaine Moore's books and website - elaine-moore.com
I now take levo +liothyronine. Things went wrong for me during lockdown which made it a bit complicated. I ended up going to a thyroid doctor from the Thyroid Uk list, who I consult via Skype and who can provide private prescriptions.
That sounds like a more stable regime. I’d like to get something like that going. I’ve been recommended Georgina Conway by more than one person so I think I’ll give her a go.
Hi pennyannie. Sorry, I messed up but I’ve now posted all the results. I have joined the thyroid eye disease charitable trust but won’t know exactly what’s going on until I see the ophthalmologist. I think I may now have hashimoto’s, in any case I have reported flare-ups for the last three years but the GP says nothing. I had 85% of my thyroid removed in 1995. No idea why they decided on leaving only 15% 😳. x
So were you hyperthyroid and they thought leaving you just 15% would be enough to function on or did you start taking thyroid hormone replacement after the surgery ?
Just read that your T3 is slightly over the range which could be the reason you are having these heart issues - what about dropping the Metavive a little ?
Yes, they thought leaving 15% would be sufficient for the rest of my life. I have never seen an endo; my GP at the time agreed to a trial of Levo when I started developing hypo symptoms. This elusive appointment will be the first since the op. I could drop the Metavive back down by 40g but I was considering going up 40g as heart issues can apparently be a symptom of both under and over. I am confused and also I appreciate that with Metavive it’s all a bit hit and miss as the actual dose may not be stable. x
I am so sorry you have not had any support - true it can be under or over - but seeing your T3 is high - I tend to think you need to drop the Metavive a little -
How long was the break between your last dose of Metavive and the blood test ?
You might do better/be more stable levels on NDT like Armour or Erfa or levothyroxine plus T3
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3 or NDT
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS
With an FT3 of 8, I’d say you were taking too much Metavive II. Your FT4 was quite high too. That’s what’s suppressing your TSH and very possibly what’s causing your heart issues too.
Would you consider lowering your dosage? I realise with fibromyalgia there’s going to be a trade off in symptoms if you do.
I’m going to post your results below so that others can see them too.
Personally I now try and maintain my ferritin at around 100 - folate 20 -
active B12 around 125 and vitamin D at around 125 -
So you might like to also think about increasing your B12 and vitamin D a bit ?
I'm with Graves and get some pain and pulling in 1 eye - but never had any answers - s such - and use Preservative Free eye drops for the dryness which seems to come and go:
I’ll look at that. I thought 10000iu D3 sounded like quite a lot. Should I just take two? Ditto with the B12? I have a regime flogged to me by the optician - preservative free drops and an eye mask that you heat in the microwave. I can live with it now but wouldn’t want it to worsen. Maybe like you, it will just wax and wane 🙏🏻
pain and ‘pulling in my eye. Sometimes I cannot open it in the morning and there is puffiness underneath which I’ve never had. I had the MEX test and the optician thought there was a chance I had TED and told me she would chase my appointment for me. She also said that it’s notoriously difficult to diagnose x
Opticians are often rather better at spotting these things than GPs! And I see now that you have Graves so unfortunately there is a chance it could be TED. Hope that endo appointment comes through soon for you.
One thing I didn't notice to begin with when reading your results is that they come from two different dates, five years apart. It is worth mentioning the dates when you post pictures of results because it isn't always picked up by readers. And many of us would dismiss five year old results anyway as being no longer representative of your health because with thyroid problems lots of things can change in five years.
The results from the 3rd October 2024 were the Medichecks ones and the others were NHS from 18th September 2024, but I will attach them here just in case I got it wrong…
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Please can you interpret my latest blood test
What does this result mean please can anyone help
Test result help (please)
Can someone please help me?
