I was diagnosed with hypothyroidism on October 30th 2019, and put on 50mg per day Lexythyroxine, I took a further blood test Dec 10th and my Lexythyroxine was increased to 75mg. I don't feel any better. My symptoms include feeling low, fatique, no energy, unable to lose weight despite exercise, and extreme brain fog, i forget nearly everything!!
I am worried i don't have enough Lexythyroxine or I have an auto immune disease like Hashimotos.
I asked my GP to refer me to a specialist , i want to see an endocrinologist, who understands Hasimotos, but also want to speed this up. I have bought an online test to check for antibodies, and a cortisol test. is there anything else i can do to get this referral quicker? Also I am based in East Sussex, does anyone have recommendations for a doctor who gets Hashimotos as well as Hypothyrodism ? And if possible a functional medicine doctor.
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daninicolle
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Be aware that a referral to an NHS endo is not a foregone conclusion. The endo can refuse to see you if they feel that your levels do not merit their expertise and things can be handled by your gp.
Sorry for being negative, but I had private testing, but my GP would not accept the results. Would only take into account or accept any tests done by them, i.e. NHS.
Hi,I’m a newbie and might be asking in the wrong place but I’m curious why you need to go gluten free if you have Hashimoto’s? I heard similar so ordered an Celiac intolerance kit and it came up negative (home test), should I still go gluten free?
Gluten is similar to thyroid tissue at a molecular level. A high presence of gluten can therefore trigger an auto-immune attack. Chris Kresser has some good articles. Here is the one about gluten and thyroid. chriskresser.com/the-gluten...
Coeliac is an extreme reaction to gluten. Even though a person test negative for coeliac they can still have an intolerance of gluten and may benefit from going gluten free. Gluten can, if this is the case, disrupt the working of the gut. A poorly working gut affects absorption of thyroid meds as well as making us feel ill.
I do not have hashimotos. However I used to feel bloated and felt better if I limited the amount of bread I ate. I have been gluten free for 3 years and not suffered from bloating since then.
Hashimoto’s frequently leads to leaky gut.......or possibly leaky gut CAUSES Hashimoto’s
it’s this leaky gut that causes issues with gluten .....though higher percentage than average are also coeliac
Poor gut function 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 over 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 and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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.
You're only one notch up from a "starter" dose, so it's unlikely you are on the right level of meds yet. Also you probably have only had minimal testing ...
Do you have any recent blood results you can share? [along with the lab range after each result in brackets - these vary from lab to lab]. FULL testing would be TSH, free T4, free T3, thyroid antibodies (which would show if you have Hashis) and key nutrients - ferritin, folate, vit D and B12. I have had some success with my GP by saying that these are the tests recommended by Thyroid UK - but you will see LOTS of posts here about private testing, when people can't get the tests they need on the NHS. SlowDragon does an excellent summary of the tests available and may pop up in a bit.
You should always have an early morning, fasting blood test (when TSH is highest) and leave 24 hours from your previous dose of levo (take the next dose afterwards)
Don't worry if you do have Hashis - it's the single biggest cause of hypothyroidism so pretty common. Lots of people with Hashis find it helpful to go gluten-free, even if not coeliac, so if you do have Hashis this may be worth a try.
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test thyroid including thyroid antibodies and vitamin levels
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ..
Extremely .important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Bloods should be retested 6-8 weeks after each dose increase (or brand change) in levothyroxine
So looking at retesting around end of January
What brand of levothyroxine are you currently taking
Do you always get same brand of levothyroxine
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
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
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
I see you refer to a lactose free brand called Glenmark. Is this new do you know? For several years I was fine on aliud T4 and Perrigo t3. Then they both disappeared and I’ve never found a suitable replacement. Tried aristo and didn’t agree with me. Any info on glenmark gratefully received
To the best of my knowledge, Perrigo was sold on to Mayne Pharma, appeared to have a brief existence under another name (Libertas) then reverted to being Mayne Pharma. I cannot be absolutely certain there were no changes, but I certainly do not know of any - other than the labelling of course!
I have taken my eye off my thyroid medication Ball so to speak due to a diagnosis of primary hyperparathoidism (which was another battle!). I feel I don’t have the energy for another lactose free t4 and t3 battle but it must be done.
Don't miss that all the levothyroxine oral solutions are lactose-free - but expensive and some find they do not tolerate the large amounts of glycerol.
As far as “starter doses” is concerned, a study of patients with no thyroid glands at all (due to surgical removal) stated “The mean initial dose of LT4 following total thyroidectomy was 1.58 mcg/kg/day.” If you still have your thyroid is is producing some hormones. Just not enough. The 75mcg would be a starter dose for a 7.5 stone person with zero capacity to produce hormone themselves.
75 mcg levothyroxine was enough to make be gravely ill:
Besides the usual suspects of autoimmune conditions, vitamin deficiencies, and “inert ingredients” in the levothyroxine that produce adverse reactions, there are well-studied genetic quirks that prevent conversion of the levothyroxine to the T3, the usable hormone to power your body. If you aren’t feeling the slightest better on 75 mcg, your situation reminds me of mine.
As the endocrinologist adjusted the dose from 59 to 75, I felt worse, with everything you’ve described. Like most on this discussion board, he didn’t believe in Reverse T3, (rT3), a toxic byproduct of conversion of levothyroxine to T3. I had to get my own lab tests for rT3, and he wasn’t convinced until he’d pushed the rT3 into the RED ZONE and I felt ready to die.
This experiment by the endocrinologist took six months. Six months of misery for me. He did learn something from it. The pharmacist, on the other hand, was well aware that some people simply cannot benefit from levothyroxine and must be given NDT, the original natural thyroid hormone replacement derived from porcine thyroid glands. I understand the NHS has made this complicated for patients in this situation. Pray that this is not your situation. I could prove genetically that I can’t take levothyroxine for very long and thrive.
During the six months it took to discover and prove this, I had lots of advice from the experienced contributors here. None of it applied to my case. For example, the standard advice is you must have FT4 in the upper range. Not physically possible for me, but I function fine anywhere in the bottom half of the range.
But that’s not all. What can also throw a wrench (or bucket of rocks) into the works of your energy budget is a condition with an organ that causes it to demand a higher amount of energy. I my trial with endocrinology, my injured brain, (signified by my avatar), consumes phenomenal amounts of energy. The brain is actually the most energy-hungry organ in the body. This never occurred to the endocrinologist. He was flummoxed by my dire fatigue even after moving to NDT. Since the brain is not an endocrine organ, it appeared to be outside his realm of knowledge, though it takes a sizable portion of daily metabolic activity, and endocrinologists are concerned with metabolics. Hmmmm.
Wow, what a journey, and thank goodness you finally found the issue, it must've been like finding a needle in a haystack, esp with doctors against you. Can i ask which Rt3 test you took? i have bought this test, but don't think it tests for Rt3: letsgetchecked.com/gb/en/ho...
I really appreciate you explaining this, so i can try and work out my path... i have to say with three young kids (now being home schooled) my energy levels are on the floor...
You're right that the test you ordered does not include that. I live in the States (poor me! 14 more days of the madman and his crazy minions) so I had liquid chromatography / tandem mass spectrometry testing from Quest Labs facility in San Juan Capistrano, California. It's their only lab able to test for rT3. It's probably difficult to find in the UK as well. It might be tucked away under testing for Non Thyroidal Illnesses.
As Quest explains about the purpose of the rT3 test: "Clinical Significance
T3 Reverse, LC/MS/MS - 3,3',5'-Triiodothyronine (reverse T3, rT3) is, along with 3,3,5'-Triiodothyronine (T3) a deiodinated metabolite of thyroxine (T4), the major secretory product of the thyroid gland and is secreted into the bloodstream. Unlike T3, however, rT3 is thought to be metabolically inert.
The process of 5'-monodeiodination that converts T4 to T3, and rT3 to diiodothyronine (DTT) is inhibited in a wide variety of conditions, collectively referred to as nonthyroidal illnesses (NTI) or the 'euthyroid sick' state. These conditions include fasting, malnutrition, poorly controlled diabetes mellitus, trauma, surgery, and systemic illness. Consequently, in patients with NTI the serum T3 level typically decreases, and the rT3 often, but not always, increases."
Have you considered a folate conversion issue? I'm half English and I discovered that a common genetic quirk has left many of us deficient in the ability to convert folate to form usable by the body for energy metabolism. It seems that, like the coronavirus and its current cunning mutations, humans have evolved interesting mutations that may or may not have been beneficial. Testing for folate is useless if you aren't converting it. I had another obscure test that examined metabolites in my urine. Essentially it reported, "Yikes! Your energy cycle is broken!" Long story here.
The deeper you go, the more interesting things you can find about your individual complaints, which, sadly, medical practitioners are apt to brush aside because they haven't the slightest idea what's going on and they don't want to admit it. Dr. Ben Lynch has written an interesting book on the epigenetics of of our common fatigue states.
Were you on 50mg Levo for over a year? And only just got up to 75? Far too long on a low dose unless there was a reason for going so slowly! Rather similar to me, in that I’m also in East Sussex and spent nine months on 50mg. I’m now on 75, and I haven’t felt any benefit either. Apart from the first 5 days on 75 when I had a burst of energy and improved sleep. I wasn’t really expecting to feel a benefit until I get onto a higher dose. Or get my vitamins D and B12 optimal. Or maybe if I change from Teva to another brand.I think working on one thing at a time might be the way to go - but I’d expect to have reached a higher dose of levo before looking for other treatments.
Hi, I was on 50mg for 6 weeks, and moved to 75mg a month ago. I have asked for 100mg of the non Teva brand, to see what that does, I have also ordered an antibodies test to see if any evidence of an auto immune disease. I have also ordered a vitamins tests to check D and B's. i just want to sort it fast, rather than wait months for NHS tests. i have three young kids and so i need energy to deal with alot,day to day!! 😪
btw, i also had a surge for a few days when i went on 75mg, then it fell back to the floor! on a lifestyle note, i have tried sea swimming and that has helped lift my mood, when done regularly, if you are in east sussex, you could try that maybe in eastbourne or hastings, but more like april than now - its currently 5 degrees!!
Well, you seem to be doing all the right things. The meds won’t work well if the dose is too low or your vitamins aren’t optimal. Unfortunately all those things take time. I wish you as speedy a journey as possible.x
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