hi I am a 67 year old female. I was started on levothyroxine in 2002 by a rheumatologist tho I believe I was subclinical at the time, I had some of the symptoms. One of the main ones has always been tiredness and fatigue. Over the years my dose was increased ultimately to 100mg per day which at the time was tough as I felt it interrupted my sleep, but the gp at the time insisted. Then a year or two later I was told reduce it it’s too high. Of course gps only test TSH and T4 so never get the full profile. I was told your results are fine it’s not the cause of the fatigue. I also had zero negative poly arthritis/fibromyalgia which as you’ll know main symptoms of which are fatigue and aching muscles. I was under Guys for a few years where I believe they did test the T3 too but was discharged back to GP when they had a mass discharge of outpatients.
Til relatively recently I believed what I was told … that my dose was right so not the cause of fatigue. Now I’ve begun to look deeper and speaking to a younger person with similar symptoms as me I realise I may not be on the right dose or that Levo isn’t the best option for me.
I asked my GP(who I’ve never been able to see in person) if she’d swap me to Armour and after three months she came back and said thyroid Uk don’t advise, so no! I’ve now consulted a private doctor at great expense as I want to sort this as much as I am able. She wanted to put me onto low dose naltrexone but I’ve refused this as if I improve I won’t know if it’s the armour or the LDN. In any event I wish to come off as much drug intake as I can, not increase it! I went cold turkey in early March after taking pregabilin for 15 years (for fibro pain) since then my sleep has been appalling which makes the fatigue and fibro worse of course.
I’ve now had tests with medichecks
TSH 2.97
FT3 3.3
FT4 17.4
Thyroglobulin antibodies are 28.5 (parameters 0-115)
Thyroid peroxidase antibodies are 43 (parameters 0-34)
Years ago someone at guys told me I was hashimotos tho I never had a goitre to my knowledge. I guess the above show it’s auto immune in any event.
An nhs test from last October was TSH 3.6 and FT4 13.
I have another appointment with the private doctor Friday. I want her to try me on armour to see if my body manages it better and if my fatigue etc improves. As someone else’s post I read earlier, I get random hot flushes and this is definitely not menopause related, I’m long through that. It never occurred to me it may be thyroid related. There are times when I get energy rushes almost like being hyper but then I crash and go hypo with the fatigue returning sometimes acutely.
This doctor has told me to go no dairy and no gluten. I told her I’d do my best but I refuse at my age to exchange one misery for another! And I can’t abide anything but milk in my tea and coffee. I use raw milk from a local farm except when I have a coffee out. A few years ago I went for a series of NAET treatments which aims to rebalance any intolerances in the body. I don’t knowingly have any reactions. In past years I’ve been g/f and dairy free, never together. I never noticed significant differences in my thyroid or general function. I try to restrict my bread intake to toast at breakfast and have double fermented sourdough which I’m informed is usually ok for gluten intolerance. I don’t eat much else of any consequence regularly containing wheat ie very little pasta or cakes/biscuits.
This all begun after a few stressful years of having my third child, then getting glandular fever (undiagnosed at the time) bronchitis and pleurisy all within about 18 months. My personal life was also extremely stressful. I’ve always thought my immune system has such a battering that something was bound to happen which it seems it did!
I’ve just bought the book about your thyroid and how to keep it healthy with the red cover by Barry Durrant-Peatfield to try and understand this all a bit more.
I’d appreciate helpful observations or any questions I should be asking the doctor Friday! Thank you for reading through this 🙏
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Starseed56
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Hi @beh1 the ranges for medichecks are below, mine for ease in brackets
TSH 0.27-4.2. (2.97)
FT3 3.1-6.8 (3.3)
FT4 12-22 (17.4)
NHS test ranges are a bit different (my results October last year so older)
TSH 0.40-5.00 (3.6)
FT4 9-19 (13)
From memory once my TSH stopped being sky high 20 or so years ago it used to be under 1 and I felt best on that tho the doctors always grumbled! So it’s crept up again. Due to ridiculous covid restrictions I didn’t have a test for about 3 years. Thanks Starseed56 💜🙏
I realise I may not be on the right dose or that Levo isn’t the best option for me.
Well, those latest results are certainly saying you're under-medicated/not on the right dose.
Your TSH is too high. When on thyroid hormone replacement - levo, etc. - it should come down to 1 or under.
Your FT4 is about mid-range, which is probably too low. And your FT3 is right at the bottom of the range! So, hardly surprising you feel tired. T3 is the active hormone - T4 is basically a storage hormone that doesn't do much until it is converted into T3, which is needed by every single cell in your body. It rather looks like you don't convert very well, but hard to be sure when you're under-medicated. So, your first step should be to get an increase of 25 mcg levo.
The antibodies are saying that you have Autoimmune Thyroiditis. There are two types: 1. with a goitre, called Hashimoto's, 2. without a goitre called Ord's. The names come from the people that discovered the conditions. Sound as if, like me, you have Ord's. But, it doesn't make much difference because the treatment is the same - thyroid hormone replacement - and they both cause swings from hypo to false 'hyper' and back again. That is doubtless why you were put on 100 mcg levo, then told it was too much, and are now under-medicated. Doctor's seem to be blissfully unaware of all this!
People with Hashi's are often gluten-sensitive, which is why a gluten-free diet is recommended. I'm not so sure if it's the same for people with Ord's. You say it didn't do anything for you, and it certainly didn't do anything for me! So, perhaps Ord's people are as sensitive to gluten, I don't know. Anyway, if it didn't help you, no point in persevering with it, eat that gluten and enjoy! But, if you are going gluten-free, it has to be 100%, not just cutting back here and there.
Dairy-free, I don't know. That didn't do anything for me, either. But I think that if you are lactose-intolerant, or in other ways upset by dairy, you would know about it. No point in cutting it out just in case.
The only thing that really helped me was eliminating all traces of soy from my diet. That used to make me feel really bad.
Did you get your nutrients tested when you did the thyroid with Medichecks? Vit D, vit B12, folate and ferritin are the main ones that need testing, and need to be optimal for your body to be able to use the hormone you're giving it. Symptoms of low B12, for example, very stronly ressemble hypo symptoms. So, very important to get those tested and supplement where necessary.
So, if you get your thyroid hormone levels sorted out, and optimise your nutrients, but still feel unwell, the next thing to think about would be cortisol levels. Your cortisol could be low, but could also sort itself out when the other levels improve.
I had some nutrients tested under nhs at my request October last year. They did refuse to test my vitamin D! I do take a large dose of vit D daily 10,000 mu I think it is.
My B12 was 367 The nhs Range is 189-883
Serum folate was 8.4 nhs range is 4.8-19
Ferritin was 27 Nhs Range is 5-204 (they told me it was satisfactory 🤔)
Interesting what you said about soy I decided a while ago to avoid that. Supposed to be toxic stuff!
You really ought to get your vit D tested, one way or another, because too much is toxic. And, as it's fat soluble, excess is not excreted.
Do you also take its cofactors - magnesium and vit K2-MK7?
My B12 was 367 The nhs Range is 189-883
That is much too low. Should be at least over 550. You risk permenant neurological damage with it that low.
Serum folate was 8.4 nhs range is 4.8-19
Should be at least over mid-range.
Ferritin was 27 Nhs Range is 5-204 (they told me it was satisfactory 🤔)
Well, that just goes to show how little doctors know about nutrients! That is far from satisfactory, and they should be doing a full iron panel.
Soy is very contraversial. Personally, I think it's toxic and nobody should be consuming it - especially not the huge quantities of unfermented soy that some vegans tend to eat. But, when one says that, there's always arguments because some people continue to believe it's a health food. It's a bit like the arguments over iodine, really. Myself, I stay well away from both!
Thanks for clarifying that. I was anaemic for many year this seems to have resolved somewhat but clearly other levels have suffered from what you said about the levels. The D3 is combined with K2 and I’m taking magnesium again now in attempt to help my sleep. I’ll present all this to the private doctor tomorrow, about the thyroid screen but also about the low folate counts, thanks for your input am realising how little I know and how wrong the nhs “normals” are 🤷♀️. 🙏💜
Well, the ferritin hasn't resolved enough. It should be about 100 for hypos. How could anyone thing that 27 was 'satisfactory' when the range goes up to 204! It beats me. Anyway, you still have a long way to go on that one. And, if I were you, I'd be asking for a full iron panel.
Yes, I remember reading that book with pencil and ruler in hand ready to underline anything that made sense when brain fogged and not not thinking clearly.
Reading the book again, now much improved and well - I think it needs double underlines in certain sections and the most useful of all the books I purchased and it never gets ' put away' :
There are several treatment options for hypothyroidism the symptoms of which can effect the whole body, from physical ability, through mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Within the NHS system your doctor can only prescribe T4 monotherapy - Levothyroxine :
This is a storage hormone, a prohormone which you body needs to convert into T3 the active hormone that your body runs on - much like a car running on petrol.
T3 - Liothyronine is no only prescribed by the NHS if an endocrinologist believes you need more than T4 and it is a post code lottery and sadly financial constraints seem to outweigh medical need in certain area of the country.
Natural Desiccated Thyroid of which Armour is the leading and most expensive brand is meant to be available on a ' named patient only ' NHS prescription but rarely do ' new patients ' acquire a prescription through the NHS - it is an unlicensed medication in the UK - though the original treatment for hypothyroidism and used successfully for over 100 years.
Up until the turn of the century both T3 and NDT were readily available through your doctor if your symptoms were not resolved with T4 monotherapy.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels - so in the first instance suggest you get your ferritin, folate, B12 and vitamin D blood tests run and we can advise where these all need to be to fully utilise and convert which ever thyroid hormone replacement you get prescribed.
Thanks pennyannie I have posted my minerals results from last October earlier this morning but think I’ll get up to date ones done. Nhs refuses to test for D! I also believe if I can get my thyroid running ok that I will generally feel a lot better and perhaps even lose some of the CFS/fibro issues I’ve also had for ages. The private doctor can prescribe armour for me so my plan is take it for 6 months and if I feel it’s helping I’ll ask her to write to my GP and put me on it, I can ask tho she refused my request maybe she will listen to another doctor. Alternatively I’ll look for other suppliers I’m not sure of the cost via her and the private pharmacy but it was over £50 a month plus £10 prescription charge 🫨 so I will then investigate other sources when I’ve got the dose right. Hope this plan makes sense? I think my results indicate doses too low and/or I have difficulties converting T4 to T3. I will read my “red book” again later. I tend to dip in to specific chapters. It’s such a mine of info. Have a lovely day 🙏💜
I fell into this forum researching low ferritin ( 22 ) as that was the only marker flagged as low on extensive NHS blood test results back in 2016/17 - and 2 years of going around various O/P departments and getting nowhere - details on my profile page - just press the icon alongside my name if interested.
I'm with Graves Disease and post RAI thyroid ablation back in 2005 - becoming more unwell in around 2015 and though there has never been any follow up scan of my thyroid function believe this toxic substance has totally destroyed any thyroid function I may have had.
I was refused both T3 and NDT by my surgery and hospital in late 2017 and by then knew enough to do it for myself - I am much improved and less stressed with me in the driving seat and not being a passenger in a one way relationship where the driver is not concerned as to the quality of my journey or destination and simply recites the NHS dogma to keep me ' in a lane ' of unwellness with anti depressants.
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.
But, if you are going gluten-free, it has to be 100%, not just cutting back here and there. 
changing from Armour to levo
Underdosed to overdosed now confused
