I'm wondering if anyone has discovered, that despite being totally drained with an under active thyroid, that levothyroxine does nothing for them? Are there other meds out there which help replace the lack of T4?
I started taking T3 (10mgm daily) 8 weeks ago. Still very little improvement.
GP's are useless. Endocrinologist advised me yesterday to increase 75mgm of thyroxine to 100mgm (previously on 120 mgm but it did nothing . I had to lower it to introduce T3 slowly) and increase T3 to 15mgm daily. I still have no social life , can't exercise and struggle to hold down a full time job. Thankfully I am working from home! I am struggling on all levels. Any advice would be appreciated. Oh and my TSH is 0.01 (previously 0.001!)
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Angie33
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Hi, thank you so much for replying and so quickly!
I've not had my vitamin D, folate, ferritin or B12 tested recently. Previously I was led to believe all was good, a year ago. Then again, my thyroid was equally 'satisfactory' according to my GP! Far from it..
I started taking 5mcg in the morning and 5mcg 12 hours later, daily. After 8 weeks, I am now on 10mcg am and 5mcg pm.
I am not convinced levothyroxine is agreeing with me. I often get a heavy pressure on my heart and chest pains. I have twice been to A&E after experiencing this for weeks on end. I get the all clear but I never had this beforehand. No idea why..
I am at my wits end with this.
I did previously take metavive from a Dr Myhill (natural supplement from pigs) It worked wonders. However, I wasn't monitored from a professional so came off it as I didn't like to gauge myself what dose to be on. I am very tempted to return to these meds as I had a life then.
Which brand of levothyroxine are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
On day before blood test, split T3 into 3 smaller doses, at roughly equal 8 hour intervals, taking last 1/3rd of daily dose approx 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
I don't know what has caused my under active thyroid. I didn't appreciate there were various reasons for this. GP or endocrinologist didn't elaborate. I now know to ask! Thank you!!
For some people it's not the thyroid gland per se that is underactive, so causing hypothyroidism, but, the low level of T3 that reaches the nuclei of the cells resulting in cellular hypothyroidism.
Not easy to spot with lab tests but...
Your labs/ last post/ 4 yrs ago!
Your GP should have realised then that you are hypo but he was probably being misguided by the guidance that TSH is the gold standard test....rubbish!
Abysmally low Frees
TSH 1.16 (0.55 - 4.78)
T4 13 (10-25u)
T3 4.2 (4.0 - 7.0)
However, you first need to optimise essential nutrients vit B12, vit D, folate and ferritin to support thyroid function.
If T4 to T3 conversion is poor that may improve things so raising FT3
However T4 monotheraphy doesn't suit every one and a cohort of hypo patients need added T3.
Most people manage on a T4/ T3 combo ....the therapeutic dose is usually found by trial and error. It can be a long slow process.
Some ( myself included) need T3-only which is the last resort...and some (myself) need a high dose to function.
Many medics seem to think the answer to all thyroid problems is to prescribe levothyroxine....not so! I saw one GP who didn't know thyroid patients could/needed to be referred to an endo! That leaves some of us either undermedicated or at worst very ill.
I'm afraid recovery can be a long slow process of elimination involving trial and error so be prepared to be patient and determined. We are all different with different needs.
I'm maybe an extreme case but it took me about 3 years to get to the root of my hypothyroidism. Medics were no help....experienced and knowledgeable members here, and much reading, helped to uncovered the answers!
If you can post the results of a full thyroid test members will advise.
Just hang on to the thought that with the correct medication you will improve!
Thank you so much for your informative and positive reply!
I'm very impressed with this thyroid site! A godsend!
I think, like you, I am led to believe to I will function better on a higher range of T3. Re T4 and TSH, this is the hard part! I am not convinced levo does anything for me.
Like you say, I need to persevere and give it time.. although a year of this is already trying
My latest results were TSH 0.01 (range 0.35 - 4.94)
T4 - 9 (Range 8.0 - 19)
T3 - 4.8 (2.4 - 6.4)
Energy levels in the gutter, brain fog, suffering from anxiety, sensitive to the cold, chest pains, weight gain and lately a light depression.
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Splitting T3 and taking last 5mcg at 9pm (assuming test 9am following morning)
Good your endocrinologist recommended increasing levothyroxine
Many of us on levothyroxine plus T3 need BOTH Ft4 and Ft3 approx 50% minimum through range
Essential to test vitamin D, folate, ferritin and B12 and both thyroid antibodies
What vitamin supplements are you currently taking?
Suggest you use private testing 6-8 weeks after this latest increase
Now you are on 15mcg T3 you might find it better to split as 3 x 5mcg at roughly 8 hour intervals
Very much trial and error what suits each person
On levothyroxine, or especially levothyroxine plus T3 we must have GOOD vitamin levels. This frequently means supplementing virtually continuously to maintain optimal levels
Hi, thank you for your reply. It's a great help and much appreciated.
I checked with my GP (who was keen to know what the endocrinologist advised me after I received my latest results, as she is at a loss) she mentioned my vitamin D, vit B12, Ferritin and folate are all good.
I note you mention to leave a 2 hr gap between taking thyroid meds and other meds (HRT and citalopram) yikes! I don't. I also tend to avoid taking T3 after 7pm as I have no idea how it works, if it will keep me awake if I take it too close to bedtime.
I seem to have a little more energy after increasing my T3 to 15mcg and levothyroxine to 100mcg. Still not at a level where I can live a normal life. Hopefully I will continue to improve as it's only day 4!
That's interesting re taking T3 at night time! Yeah it's certainly trial and error. Today I am being super careful when I take my meds! 2 hour wait before breakfast! Thank you so much for all your information. It really is a minefield. I just wish GP's were a little more knowledgeable on this topic!
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
I didn't realise there were different brands of levothyroxine. I am on levo sodium. With my tight chest and heavy pressure on my heart I wonder if they are good for me!
There are several makes of levothyroxine in the UK - and many more abroad.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Thank you again for all the information above. I really appreciate it. I will check my medication for Teva (Northstar) gosh, why don't GP's advise us about a fraction of this stuff!
I must admit, I often take my levothyroxine same time I have my breakfast as I am too exhausted to set my alarm 2 hours beforehand and in order to function for work, I need to eat. I need to manage this much better!
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