Hello all. Thank you so much for taking the time to read my post.
In brief, I am on 2.5mg daily for Graves-confirmed diagnosis 1 yr ago with high TrAb.
My TSH results in this time have gone from <0.01 to 3.73 (0.27-4.20), FT4 results from 25 to 12 (11-22), FT3 results from 10.7 to 4.46 (3.1-6.8).
I reduced down gradually from a starting dose of 20mg but have been struggling with mild hypo symptoms for a while. I'm wondering what your opinions are on whether I should stop the Carbimazole now or continue until the 18 months are up? I would ask for a repeat TrAb before stopping the meds.
In addition to this I have seen that my Ferritin and Folate results are very low in range. I've continued to suffer from palpitations and have a hunger for air most days...it makes me feel very anxious, stressed and irritable and I wonder if these symptoms may be a result of my slight deficiency? I'm confused because my iron is in range so am at a loss of how to help myself. Results and ranges are as follows:
B12 404 (197-771)
Folate 4.59 (2.4-17.5)
Ferritin 38.4 (30-400)
Iron 21.2 (5.8-34.5)
Transferrin 2.39 (2.0-3.6)
Perhaps I'm just clutching at straws but I really am desperate to be rid of this breathlessness once and for all! I should add that I'm peri-menopausal but not on any form of HRT yet-I was hoping to control my Graves first.
Thank you, Emma.
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Thank you SlowDragon. Yes, bloods are from last week, and yes, endo appt was pre-booked already for this Thursday. I feel my VitD is okay (didn't test)...take D3000+K2 spray daily and don't suffer the morning aches I used to, just heaviness, brain fog, etc along with the tachy and breathlessness. No other supplements.
Suggest you start a daily B12 and add a separate vitamin B complex after a week
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
Then start B complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I can't find the words to sufficiently express my gratitude! Thank you SO much for all of this information SlowDragon. So kind of you to take the time. I'll work on all you have suggested.
Well - from a one perspective these results are telling me that this phase of Graves is now over -
Your TSH has bounced back into range which tends to make me think there are now few, if any, Graves antibodies circulating in your blood stream as these abs tend to ' stick ' onto the fine hair like follicles within the body pushing these follicles down onto TSH receptor sites which in turn ramps up T3/T4 thyroid hormone production.
The other issue is of course you are now hypothyroid and the longer you stay of the AT drug the more symptoms of hypothyroidism you are likely to experience.
Symptoms of hypothyroidism start creeping in once the TSH rises over 2 - and years ago you would be prescribed T4 thyroid hormone replacement once the TSH tipped over 3.
The aim of the AT drug is to try and manage your symptoms to a place where you are neither hyper nor hypo while you wait out this phase of ill health caused by an Auto Immune attack.
A euthyroid reading - would be something like a TSH at around 1.20/50 - with a T4 at around 50% through its range and a T3 tucked in behind at around 45% through its range.
Currently your metabolism is running slow with a high TSH and a T4 @ Zero and a T3 @ 35% :
NB: Is the T4 range 12-22 ? or if it is 11-22 your T4 is just 9% ?
Ok - so we know the longer you stay on the AT drug the better the longer term outlook is for you, the patient, so you could start taking the AT every other day or ask for the addition of a little T4 to keep you topped up for next 6 months - just see what options are forth coming.
In the meantime your iron stores have been falling away and causing additional horrible symptoms so, yes, ferritin needs to start being built back up to at least over 70.
I couldn't tolerate the NHS iron tablets and found an Iron Bisglycinate supplement much kinder on my stomach and I started eating liver twice a week - but I was much lower in the range than you.
and yes I think it best to say Ciao to Graves before embarking on any new treatment.
I hope that all makes some sense - my brain function is a bit slow today ???
P.S. If you go into Thyroid UK - the charity that supports this patient to patient forum there is a very detailed list of both hyper and hypo symptoms - and it may just be a tick box exercise for you but it does help clarify ones understanding of where you are in all this - and yes - you guessed right - as it is nor that simple as some symptoms can sit in both camps.
You're so kind pennyannie, thank you very much for the insights and experience you have shared with me- I'm very grateful! I have now begun taking my small dose of carb every other day and will choose supplements asap also. Ferritin is my iron store so I'm thinking that should rise first before overloading my iron? I'll try book in more testing soon. And yes, I should definitely revisit a symptom list.... I'm certain if I were to get rid of the breathlessness and palpitations (which I'm thinking are caused by low vitamins) then I'll be looking at largely hypo symptoms. And probably peri-menopause too of course. It's a minefield! Massive thanks.
Hi, I’m a long term user of carbimazole with graves also, I can’t really advise on numbers etc but just wanted to say that I’m also peri meno no hrt, my thyroid is having trouble getting settled just lately, I’m thinking this could be due to changing hormones and was waiting to see if that can be under control before starting hrt … but I’m at the point where I think I’ll need the hrt to actually help it get under control again.
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