13st 2 lbs - have recently lost 3 stones in weight unintentionally which is believed to be a gluten intolerance problem not yet identified as celiac. At aged 50 I was only 8.5 stones in weight could eat anything and was a size 10/12 - menopause suddenly I started to put on weight and ended up rapidly putting on weight until I was 16 stones in weight - told I was eating too much ! - I was trying to get diagnosed during the era of Dr's being struck off if they gave you thyroid hormone and your blood tests were subclinical - took 15 years of trawling around every NHS Endo - private including Harley street endo's no-one would help me - this has resulted in me becoming very ill and being left with serious health issues still ongoing including Lupus plus plus plus - a consultant actually told a colleague that I was ill due to thyroid hormone not being given to me at the right time !
Please note I have Lupus and kidney issues and have been advised to keep D levels on a maintenance dose only as can cause stones which I am prone to - and also ferritin - I do not get on with iron - have good diet and taking B12 and Vitamin C - I am nutritionally aware and consider I am only alive today because I did not take any drugs for the Lupus etc. as I couldn't I was allergic to everything due to the low thyroid hormone causing the metabolism (liver) to run slow and not allow drugs to clear quickly enough so was going toxic - even on antibiotics. I 'ran' my disease states by identifying what part of the body was showing me it needed help with vitamins or minerals - think about it - dis-ease of the body - lucky enough in those days to be tested every 3 months - what I have found is that the body will drag from your food anything it needs to keep you 'alive' - I know because I have proved that - also as I corrected one nutritional deficiency via a tested deficiency - it put out of balance something else - it was like the 'forth bridge' scenario !
My results are as follows - all done via NHS clinic I attend for Lupus etc.
All vitamins and minerals are OK
Free T3
5.5 pmol/L
Range:2.4 - 6 pmol/L
T4
16.8 pmol/L
Range:9 - 23 pmol/L
Date:12 Mar 2024 13:01:00
TSH
0.01 milliunit/L
Range:0.3 - 4.2 milliunit/L
Date:12 Mar 2024 13:01:00
Ferritin
98 ug/L
Range:20 - 300 ug/L
Date:12 Mar 2024 13:01:00
Vitamin D
78.4 nmol/L
Range:50 - 150 nmol/L
Date:12 Mar 2024 13:01:00
Zinc
11.5 umol/L
Range:9.2 - 19.2 umol/L
Date:12 Dec 2023 13:16:00
Selenium
1.32 umol/L
Range:0.66 - 1.57 umol/L
Date:12 Dec 2023 13:16:00
Any help from the experts on here would be appreciated - currently just upped my liquid thyroxine (lactose intolerant) to 120 mcg - from 100 mcg - and my hair and eyelashes seem to have stopped falling out. I am on steroids - methyl pred 6 mg for adrenal insufficiency.
Sorry for long post but think it was needed to clarify the situation and why I am asking the question.
Many thanks
A
PS forgot to add thyroid atrophied due to Ord's - and at the beginning my TPO antibodies were over 7500 ! They never fully came down until my thyroid completely went and the autoimmune attack stopped.
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posthinking01
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You've been through so much. It's a travesty of our times that patients get such poor treatment. It sounds like you found one of those rare gems in the end who has helped you. I'm also Gluten intolerant, likely coeliacs but refused to go through the testing protocol to find out!
I know nothing about liquid levothyroxine so can't comment on that. I also know very little about Lupus ...lol. Sorry...
It looks like you convert your thyroid hormones well so that's good. Are your current results since you raised you levo up 120? How do you feel? Any Symptoms?
In an ideal world I would raise the vit D a bit more but I hear that's a no no for you. Its all about balance and you have several conditions to balance....I do too.
When I'm unsure and the bloods don't tell me enough, & I have symptoms that could be signs of over or under treated I often find the old fashioned approach of checking temp and pulse before rising helpful as another add on.
A good sign for you though is your hair has stopped falling out so the increase was in the right direction. I'd retest in a few weeks time to check..
Being Gluten free myself and needing b12 jabs I do take a basic b complex with folate and find this really helps me to feel well.
Agh thank you for kind words - that mean's a lot - yes I did find a consultant that helped me in the UK but had to go to Belgium to actually get the thyroid hormone etc. etc. and they did the blood tests - was lucky we could afford it in those days as couldn't now we are retired - cost a fortune but saved my life and then was on the long road to trying to find out what the rest of it was - adrenals ! thankyou again - yes the tests were when I had raised to 120 mcg - I actually discharged myself from an endoscopy as I really felt unsafe as they just did not understand my need to speak with a surgeon first to tell him my tongue was swollen that morning and would that affect me having a spray of the pain killer -I heard him say to nurse I will speak with her in the treatment room - considering I have collagen disorders (tongue is made of collagen) where even eating a piece of toast can in some instances leave the roof of my mouth in shreds - I just wanted to tell him my collagen was playing up that day and was it safe to have a camera put down my throat which could have caused a bleed - add to that I had to have an IV of 100 mg of steroids for my adrenal insufficiency and they kept me waiting from 9.30 a.m. and it was nearly 1.00 p.m. before they even were coming to take me in - and on hearing from another patient she had to stop them giving her two shots of the spray because she felt she couldn't breath - I said to them I really do need to speak with Mr. ??? - he came round looking like he had had a really bad day anyway and I told him I wasn't sure this was the right thing to do today he agreed and looked relieved - I signed discharge papers and left - wasn't nice wasting an NHS appointment but I don't consider it was my fault and there is no way I should have been left for 4 hours to go in having had my IV uptake of steroids - it needs to be done within the timeframe of the efficacy of the steroid uptake otherwise I could have an adrenal crisis. Just have to treat the gluten problem I have with kid gloves but I am finding now that the gluten is not harming me as much as the gluten free rice products are - when eating the rice products my eyes are going jet black underneath which tells me my kidneys don't like them - nightmare - but eating gluten now seems to be OK within moderation !
You cannot simply use weight to find your required dose. However, loss of weight - if that is the ONLY change - could imply you need a lower dose. And vice versa if you put on weight. But no formula can tell you by how much to adjust your dose.
It is good you have fairly comprehensive lab results.
Others who have been where you are, or at least closer than have I, will likely provide some ideas about your current dose.
helvella's calculation document and spreadsheet can be can be found by following this link:
helvella - Estimation of Levothyroxine Dosing in Adults
A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.
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