I’m so pleased to have found this site, and would really appreciate your guidance.
In brief, I haven’t been feeling well for approx. the last 2 years, although poor circulation and always feeling cold have been pretty much life-long (& runs in the family). Over this time I’ve been to the GP reporting bowel problems – chronic bloating/pains and constipation; trembling legs on minimum exertion; hair loss; memory loss/fog; dry mouth & thirst, and lastly, terrible insomnia. Despite now knowing that these are symptoms of low thyroid, at no point was it suggested I was tested and instead I was dismissed as ‘anxious’ (which after a year not sleeping and unable to go for a walk/have a crap, is true I guess!).
A helpful local 'complimentary' practitioner suggested I get my T3 tested. My GP refused, saying my TSh had been normal in previous routine tests, so I paid to have it tested privately. These tests were:
TSH 2.74
FREE T4 13.5
FREE T3 3.2
{HAEMOGLOBIN 131 (120-150)
CORTISOL 292 (138-635)
SERUM IRON 14.9
Serum tibc 50.3 (45-81)
Saturation iron binding cap 30% (20-55) }
Additionally I have been asking for several years about my B12, thinking this might be responsible for some of my symptoms, for despite being a meat/egg eater, it has consistently been in the low range (250-350ng) – not changing even when I took a B12 and iron supplement which had 8000 x the RDA!
My haematocrit levels has also been flagged up over many years as low but “no action needed as only a little abnormal and of no concern” – around .36. My ferritin creeps in also at the low end, varying in range between 16 and peaking at 29. My folate is I think normal at approx. 10
My white blood cell count has been low the last few tests, but only marginally at 3.9. The lymphocyte count accounted for one of these lows one time, and neutrophils another.
As a result of the blood test (dec ’15) for T3, my GP sent me to an endocrinologist who suggested I might ‘trial low dose levothyroxine’ and see if I feel better and stop after 6 months if I don’t.
So, I’m not really sure if I have a thyroid problem or not, especially when I read some of the severe issues and numbers reported here. I requested the natural thyroid supplement from the GP, who explained the NHS didn’t dispense these, but he did agree to prescribe me liothyonine sodium when I expressed my concerns about whether my body can convert T4 to T3 (I think by now they just want me out of the surgery!). Almost overnight, a year of insomnia ended and my muscle strength has slowly built up and once more I can do brisk walks/moderate exercise and feel more like the ‘old me’. At the same time, I read about odd blood results on just T3, so decided to take the levothyroxine prescribed as well – although can’t say I’ve noticed it making any difference to my mood/health.
So, at the moment, I’m taking 1x25mcg levothyroxine each morning, plus 1/4-1/3 of 20mcg T3 with it and at lunch (i.e., 10-14mcg per day, hard to split the pills with any accuracy). I’ve no idea if I’m doing the ‘right’ thing, whether I need to take medication at all or eat seaweed and brazil nuts?? I also read one of the recent responses which was so helpful re not taking supplements/iron with it, which I had been doing (as well as administering B12 injections for past 9 months which certainly raised my B12, but didn’t seem to make any difference to iron).
Basically I feel very much in the dark, trying to learn through articles/web-sites/complimentary practioners, but not having the confidence/ability to really understand or know what to address, especially when they say different things. All I do know is that the digestive problems are at an all time low, and I basically don’t eliminate (which seems a miracle, but is so!). Twice weekly 'rabbit pellets' have even dried up; the laxatives prescribed by the GP made no difference even at double dose and combining them. I’ve done a few enemas over the last 2 months which have been a great relief and yesterday had 3 cups of very strong senna tea (like 20 pods), which cleared me out totally, so success there, but I’ve felt washed out and not sure it’s the way to continue long-term. Is this linked to hypothyroidism? Causing? Caused by? Oh, and btw, the only symptom I don’t seem to have of hypothyroidism is weight gain - I’m slim, have never really gained weight, and on the contrary I lost a stone last summer after 10 days of diarrhea ( could this be linked to the constipation/increased gut issues?) – was away at time so never got seen/tested and thought no more of it once it stopped (except to rather miss it!).
Sorry, not so brief after all. And rather anxious!
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vivo
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Vivo, you should have a thyroid test 6-8 weeks after starting Levothroxine and Liothyronine to see whether dose is adequate. Arrange an early morning blood draw when TSH is highest, and fast (water only) as TSH drops post prandially. Take Levothyroxine and Liothyronine after the blood draw.
You might try a gluten-free diet for 3 or 4 weeks to see whether digestion and bowel movements improve.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Vivo, just as you can't be a little bit pregnant, you can't be a little bit g-f. It's all or nothing if you hope for benefits.
If you stop taking Levothyroxine (T4) you will have to substantially increase your Liothyronine (T3) dose to compensate. I prefer T4+T3 combination as I think it is a smoother ride than T3 only.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
This is from Thyroiduk.org.uk and you will be surprised, I feel sure, when you read the page. It's a pity more doctors are not so aware of all of our clinical symptoms and follow the guidelines which leave thousands very unwell (i.e. waiting till TSH is 10 which it might never do in our lifetime) , in pain, with a myriad of symptoms. The fact that you feel so much better with thyroid hormones shows that you need them. Before the blood tests were introduced people with clinical symptoms were given NDT and if they felt better they continued on NDT:-
Do you think there is an advantage in taking NDT? I have now read so many different sites saying different things (i.e., not much better and more likely to not need medication for life down this route versus it being unreliable in dosage and potentially harbouring nasties!), that i don't know what to believe. Also, if I stick to synthetic, is there an advt. in taking the levo. as well as the T3 which made such a rapid difference?
Thank you for this site - it's fab to have someone to turn to
Rumours abound about NDT - it was the first life-saver for people diagnosed with hypothyroidism. Before that they just died of awful symptoms. That was in 1892 and has been in use very successfully since then. It was only Big Pharma's promotion that levothyroxine was better than NDT (which I supposed was classed as 'old fashioned' but on NDT no blood tests were necessary and we were diagnosed according to our clinical symptoms and gradually dosed till we were well. It contains all of the hormones our own healthy thyroid gland would provide plus Calcitonin (in a small quantity) that helps prevent osteoporosis.
Levothyroxine is just T4 only and should convert to sufficient T3 when on a decent dose but sometims that doesn't happen and because the TSH is 'in range' doctors don't increase dose which results in symptoms returning and being given different meds for the symptom rather than an increase in thyroid hormones.
T3 is the hormone needed in all of our receptor cells which should convert from levo. Sometimes a few people have a Gene DI02 which means they cannot convert T4 at all. It is included in NDT but the T4 in it should also convert too..
Some don't benefit from NDT, whether it's the fillers/binders they may be sensitive too I'm not sure. Many recover with NDT and others T3 added to T4 and some T3 only. It's a pity the doctors aren't at least allowed to let us trial combinations if levo isn't doing it's job.j
vivo,
Welcome to our forum and sorry to hear that you feel so unwell.
Thyroid hormones require certain conditions to work well in the body and unfortunately cause deficiencies in the very nutrients needed for good thyroid function.
It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.
You need to blood test hormones six weeks after starting meds to assess what is going on and adjust dose accordingly. (private labs link below).
It would be helpful to get thyroid antibodies tested as well (TPOAb & TGAb) to determine Hashimotos Autoimmune Disease which is prevalent in hypothyroidism.
Any nutrient & iron deficiencies must be addressed and once gut issues are improved will absorb better.
Gut can be improved by taking physillium husk mixed with water several times day, keeping well hydrated and addressing any gut issues such as candida or parasites.
Supplementing Betaine with Pepsin with replace low stomach acid that is required to keep bad bacteria in check and aid nutrient absorption by allowing good food digestion. Digestive enzymes will help further and probiotics will replace lost good bacteria.
Ensure all nutrients are optimal (B12, Vit D, etc). Take any iron supplements with Vit C (to aid absorption and help prevent constipation), follow a gluten free diet & supplement 100mcg selenium ( to help T4-T3 conversion & reduce a possible high antibody count).
Getting a saliva stress test done will help assess what sups are needed to support possible unbalanced cortisol levels).
Do not keep changing meds and doses as hormones take six weeks to totally saturate every cell in the body and symptoms often lag behind good biochemistry giving false ideas of no improvement.
You need to self educate in order to improve your health.
Good luck & believe you will feel better when all issues have been addressed.
Four saliva tests that measure the available "active" cortisol (& DHEA) secreted at set times over a 24 hours period. The results will allow you to see any imbalances in the daily circadian pattern so enabling use of correcting supplements to aid your adrenal health. Unfortunately this test is not generally used or recognised by GP's.
The cost is £77.00 which is a discounted price for ThyroidUK when code A42AQ is used.
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
wow - thank you, such a full reply, very grateful indeed.
Does the pill/supplements spacing rule apply to both the lio. and levo? And if so, what are your recommendations re taking the Lio, either in one go 1st thing or spread in at least 2 dosages - again, I recall having read different advice from site to site.
When you talk about the thyroid antibodies tests, I've just received the results of Se thyroid peroxidase Ab conc (AG1835) as 'normal' and 'neg" - is that the same test as you refer to, or at least one of the same? And my D2 & D3 combined total was 76.3 and was classed as normal, though have little faith left in main-stream testing. any thoughts? And I shall also do the saliva test to measure cortisol, many thanks.
Re physillium husks - did try this (plus chia seeds/boiling linseeds and drinking the 'glue' ) but found it bloated me & didn't result in a movement, but maybe I'll try it again now that I'm feeling better generally otherwise.
Is there a way to know for sure whether I have candida or parasites? I know there's muscle testing etc, but not sure how reliable this is??
And thank you, I will certainly try the betaine with pepsin (& already take a good probiotic plus digestive enzymes).
Many thanks again and I look forward to reading my new bedtime material in the sites you gave me!
hi there - I'm mid-doing the genova tests and not totally clear about procedure: I send them the £77 back with the code above plus the 4 samples? and then you contact me with the results? they tell me?
I'm always harping on about low carb diets. I suffer terrible constipation which has improved since starting my treatment but I still get it occasionally. However when I went strictly low carb which forced me to eat natural foods I was in full flow shall we say. I used to make my own granola with stevia to sweeten, butter or coconut oil to bind then flaxseed and various nuts desiccated coconut and cocoa powder. That I found sorted me right out. It's been proven time and time again that hypothyroid sufferers don't process carbs very well. Even if I stick to good carbs if I have too much I don't go. Simples
Thank you - I have been following a loose paleo/gaps diet for some time and can't say it makes any difference to the constipation, though does help with the bloating and energy levels. But maybe I haven't tried it long enough - much as I love bone broths and making my way through jars of almond butter and avocados etc, I then get hungry and feel I need a filler like a sweet potato or grain - for health as well. I make a similar granola for my son with raw cacao nibs, and every seed I can find, but funnily, it doesn't fit well with my digestion at all. Guess everyone's different , but shame as I love it. Oh well, I'll keep trying and am grateful for suggestions.
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