hi, I’ve now been on Levothyroxine 25 since last June. None of my symptoms have changed. GP has just increased it to 50 and said to retest in 8 weeks. I have been asking for increase for quite a while as my level was still in the upper range of normal last test I had in October . My levels had been borderline since 2017 but GP would not treat. I am now shocked to discover that in 2019 I had my Serum Thyroid Peroxidase level antibody concentration and it was 73 outside reference range. My serum tsh level was 4.9 outside ref range and the serum free t4 level was 14.2 within range. Still GP did not treat. My serum thyroid peroxidase level has never been retested. My GP has only increased the dosage now due to me having a faint/seizure which led to brain scan showing some cerebral sub cortical T2 hyperintensities white matter that may be small vessel disease and I don’t have any clear risk factors for this. Plus I said I am still having night sweats and been on HRT for a few years now. Before I finally persuaded GP to start me on Levothyroxine last June, they always put all my symptoms down to the menopause. Question is, does this mean the test in 2019 showed I had Hashimotos and it was ignored.
hashimotos : hi, I’ve now been on Levothyroxine... - Thyroid UK
hashimotos
'does this mean the test in 2019 showed I had Hashimotos and it was ignored.'
Yes, that test suggested you may develop, or already have autoimmune thyroid disease. BUT, not everyone that has a positive antibody test goes on to need replacement thyroid hormone. So, if your TSH was in range at the time of that positive antibody test, you would not be prescribed replacement hormone.
The tsh level was 4.9 outside reference range but the free level was within range at 14.2. I think I will ask for the antibody to rechecked as it’s just the standard ones being done in 8 weeks time.
Your GP is unlikely to re-test antibodies. The NHS doesn't consider them to be relevant when it comes to treatment. A positive antibody test just confirms that the cause of your thyroid disorder is autoimmune. For treatment to be prescribed, TSH being outside the range is what matters. But if FT4 is still within range, then your GP may want to wait until TSH rises as high as ten.
Do you think there could be a link with the night sweats and autoimmune. Or do I go back to blaming the menopause. !
Have a look at this pinned post, you may find some useful information that you can show your doctor to help your case for getting thyroid hormone replacement prescribed sooner healthunlocked.com/thyroidu...
Request GP test B12, folate, ferritin and vitamin D
Low vitamins extremely common when hypothyroid
Night sweats are strongly linked to low B12
Standard starter dose levo is 50mcg, unless over 65 years old or heart condition
Likely to need several further increases in dose over coming months
Meanwhile get vitamins tested via GP or privately
'Night sweats are strongly linked to low B12'
I didn't know that. Do you have a link that would be suitable to take to a GP?
pubmed.ncbi.nlm.nih.gov/252....
Abstract
Vitamin B12 deficiency is common. It is known to cause a wide spectrum of neurological syndromes, including autonomic dysfunction. Three cases are discussed here in which drenching night sweats were thought to be caused by vitamin B12 deficiency. All three responded dramatically to vitamin B12 therapy.
bmj.com/content/349/bmj.g52...
However, it did not mention autonomic dysfunction caused by vitamin B12 deficiency. Urinary incontinence, impotence and orthostatic hypotension are well-recognized autonomic manifestations of vitamin B12 deficiency (1) .
I have seen patients with long-standing drenching night sweats responding dramatically to intramuscular vitamin B12. Physiologically it is not surprising since changes in the peripheral autonomic nervous system may be the earliest manifestations of small-fiber neuropathy and hyperhidrosis frequently accompanies small-fiber peripheral neuropathy (2
My vitamin D and ferritin are always low even before diagnosed. I did not realise it may be related
My serum thyroid peroxidase level has never been retested.
NHS rarely, if ever retests thyroid antibodies…..they aren’t interested
Which is a pity because many Hashimoto’s patients find TPO antibodies slowly reduce on gluten free and/or dairy free diet
yet that’s only noticeable if you test privately
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
nice.org.uk/guidance/ng20/c...
Or buy a test online, about £20
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Post discussing gluten
GP has just increased it to 50 and said to retest in 8 weeks
You were left far too long untreated and far too long on only half the standard starter dose of 50mcg
Levothyroxine doesn’t “top up “ failing thyroid, it replaces it
Ensure you book early morning test and last dose levothyroxine 24 hours before test
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Aiming for TSH around one, Ft4 and Ft3 at least 50% through range and all four vitamins tested and maintained at optimal levels
Thank you for the in depth information. I will be making another appointment to see a GP. I am waiting results to my cholesterol blood test and having a repeat ecg as when I had faint/seizure it was abnormal but the follow up blood test said no heart attack. So I have requested another ecg as no one has said reason for abnormal negative T waves on my ecg although from own research it could be due to low electrolytes as I was quite sick after my episode.
I weigh 68 kg and I am 55 years old.
So guidelines suggest
Starting on 50mcg
Retest 8 weeks later
Increasing dose in 25mcg
Retest 8 weeks later
Likely eventually to be on something around 100mcg daily or a bit more
Hi Ozzy77,
I was told 34years ago I had an erratic thyroid, dipping well outside of range, but only finally got Levothyroxine nearly 4years ago. I'm sure because confirming thyroid issues entitles you to free prescriptions for all medication for life is a cost to NHS, is a factor with GP's confirming this disorder. On retest if results are still out of range ensure you ask for higher dose. I kept getting told sweats are menopause even though thyroid results were not at all right, until one GP did a graph over the year and was shocked how bad it was. If you are on any other meds other than HRT check if they have 'sweating' in side effects. If not then good chance thyroid. My GP told me that an unregulated thyroid does have some very nasty side effects on the body. At least you're on the right path now😊
Good Luck x
honestly the free prescriptions are nothing to do with clinical resistance to treating thyroid disease. This resistance is prevalent in other countries with different healthcare models. This situation is temporary.... with advancements in science, approaches to healthcare and deeper understanding of the benefits of synthetic hormones everything will be different in 10 or do years (especially when AI gets involved in clinical development and diagnosis). For now we are on a similar journey to HRT and other conditons mainstream science has been poor at adapting to.
Melvyn Bragg did a good show on R4 recently with 4 or 5 scientists who are at the leading edge of syntheitc hormone development. It was very interesting. The current breakthrough in knowledge is staggering but it will take quite a few years to feed through the NHS.
Remember the aussie guy who said stomach ulcers were a result of bacteria for 20 years but got ridiculed by mainstream clinician until proved right. Well they gave him a nobel prize in the end.
Hi CapnM
Thank you for your reply. I do remember the stomach ulcer scenario.
I was going by a comment from one GP saw when I had the comment 'hmpf so free prescription, no medication yet wait' when I had gone with very low levels on thyroid and couldn't swallow, nails splitting vertically up nail bed, swollen fingers too, and a voice that was deep and gravelly. Couldn't keep awake in Dr's, rashes, sweats, nausea, etc. When I finally got sent forr a throat scan I was told I had 2 poss 3 nodules growing inwards in my throat. I had to keep making appointments to get a GP that finally said yes thyroid meds. I even said that I wasn't making it up for free prescriptions and he said ' I know I've been plotting results!' That was on my record but still hadn't been able to get the meds at the time with the other GP!
I agree with the comments about resistance to treat thyroid as I've had negative comments from a consultant with regards to no meds for it.
Let's hope one day better understanding filters through.
😊
Each gland in the Endocrine System can be thought of as a player in an orchestra ....and the Thyroid..... is the conductor ! 🌻
can you possibly try private. I was let down badly by the NHS. It was going private that I got my life and health back.
My thyroid levels were abnormal is 2003 I was constantly ignored and was given HRT as also I entered the menopause at same time. It wasn’t until 2008 after many requests to check my thyroid they finally did it again. My TSH was 36! No wonder I was in a bad way. I didn’t realise until I had access to Patient Access years later that my thyroid levels had been abnormal for years. They just kept saying I had depression. I knew I didn’t.
The NHS unfortunately are terrible when it comes to thyroid treatment. Going private was my saviour in the end.
i started to get hashi symptoms at 45, took 4 years to realise and get on levo (after pushing subsequent to an initial rejection) then another 4 years on it getting worse (after an initial uptick). somewhat like you I was trapped on a low dose with 'my bloods in range' bouncing around all over the place. In the end I took t3 of my own sourcing and within a week felt much better, then just got stronger every day. I stopped taking levo and just on 10mcg T3 a day which I source myself. For many reasons getting treated for anything other than overt hypothyrodism is a lottery but good idea to persevere with GP whilst developing your plan B - I had a very pleasant and earnest GP right up to starting T3 but when ever I discussed thyroid in any detail she just looked at me like a goldfish. They are time poor, lack tools for effective disagnosis, have no training budgets and are not being steered not to treat sub clinical hypothyrodism. hope it gets better soon.
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