To give a bit of back story, I first saw my GP for suspected thyroid issue in Jan 2021 at that time I was told my blood results were normal but I was Vit D deficient which was the explanation for my symptoms. Even though I felt fobbed off I took the findings for what they were as the GP is the expert right?? However my symptoms developed massively over the last 3 years but there was a huge part of me that was hesitant to go back to the GP about it as I didn’t want to end up feeling like a hypochondriac but my family essentially made me do something about it. Fast forward to now - I’ve had the private blood test confirming what i suspected and today saw my GP who organised urgent bloods which I’ve had this morning and a scan which is on Saturday. So going back to the title of this post, the GP I saw today is new to me and a totally different experience to that I’ve had in the past. She enlightened me that my 2021 bloods showed I was subclinical hyperthyroidism TSH was 0.2 (which I was unaware of) - on that occasion they did not test the antibodies so I have no baseline on that. She informed me that I should of had annual reviews since and that has obviously not happened. She was very perplexed that I have gone from Hyper to Hypo with positive TPOab and Tgab. Is this a known thing? Can anybody help explain what is going on or why this might happen??
Hyperthyroid To Hypothyroid??: To give a bit of... - Thyroid UK
Hyperthyroid To Hypothyroid??
Looking at your recent blood tests with TSH of 17 and FT4 below range you are now in the category of hypothyroidism.
Positive antibodies mean that you have Hashimotot's or autoimmune hypo which would fit with your TSH being below range and now above range.
GP should start you on 50mcgs Levo whih you take for 6-8 weeks, do another blood test, review results and increase by 25mcgs until TSH is at or just below 1 where most people feel well.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Have you also tested key vitamins ferritin, folate, B12 ? What were the results with ranges?
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thank you for your reply. Sorry should have clarified that 2021 bloods showed TSH at 0.2 and below range indicating sub clinical hyperthyroidism at that time. (Have edited to show this in my post now.) which is why I’m questioning how can hyper become hypo? I’d really like to understand the science of why this might happen.
I’m questioning how can hyper become hypo?
In the early stages of Hashimoto's this is often what happens. The attacks on the thyroid stimulate it into making more hormone, but as time goes on and the thyroid is slowly destroyed then it cant continue that and you go hypo. The thyroid is slowly being destroyed.
Thank you for explaining
yes .... it's a thing.
autoimmune hypothyroidism quite often starts with a self limiting period of mildly higher thyroid hormone levels, causing a lower TSH. It doesn't happen to everyone , and it's often missed if T4/T3 levels are not very high, or if symtoms are not severe or just not recognised for what they are.
however this is not the same as the true hyperthyroidism of Graves Disease, ( where the thyroid is being told to continuously make too much T4/T3)
it's called Hashitoxicosis ~ where some stocks of ready made T4/T3 , (which are stored in the thyroid tissue), are dumped into the blood as a result of the damage being done to the thyroid ~ imagine a sponge holding some ready made T4/T3 and the autoimmune damage is squeezing the sponge... kinda thing.
Thank you so much for the explanation, wonder why the GP seemed confused about it then still at least I now understand why.
wonder why the GP seemed confused about it .... unfortunately this is something you'll come to realise is 'normal' for very many GP's , (even the nicer ones who are genuinely trying to help you and are taking you seriously ).
welcome to the wonderful word of thyroid treatment .... which can be summed up as: woefully inadequate and overly simplistic training of GP's (and endo's !) in medical school , combined with general lack of interest from influential endocrinologists in trying to do any research on the intricacies of thyroid disease ~ or even to sort out the basics ~ for example fT4 testing is still not standardised around the country , the lab ranges for fT4 are all over the place and therefore very difficult to compare properly between labs .......... it's just not sexy/ dramatic enough to interest anyone (unless it's your life it's messing up od course ... hence why so many of us on here are rather more interested in learning all we can about it than the average GP is )
So how do we navigate these inadequacies? Do we not have Thyroid “specialists” in the NHS to help us? Or do we have to seek private unaffordable services?
There are Endocrinologists on NhS but it can take ages to get in (9 months for me) and then once stable you are dropped back to the GP who can’t test FT3, only TSH and if you are lucky FT4.
Rare to get adequate testing on NHS
Many GP’s are pretty clueless on how to manage autoimmune thyroid disease
Hence this forum is by far the busiest on Healthunlocked
There’s approximately 2 million people in U.K. on levothyroxine, about 90% are female
Levothyroxine is 2nd or 3rd most prescribed medication, so it’s definitely not a rare disease…..but it is rare to find a U.K. medic who understands how to manage it well
You will see thousands of members on here test privately to make progress
You should be starting on 50mcg levothyroxine
Unless you know you’re lactose intolerant, best to avoid Teva brand levothyroxine initially
Teva upsets many people
Best start on any brand apart from Teva
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
So you know you have high TPO and TG thyroid antibodies confirms cause is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
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
Post all about what time of day to test
healthunlocked.com/thyroidu...
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
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
Do we not have thyroid specialists in the NHS? ....... No .... no such speciality exists in the NHS ..... look for Thyroidologist and you'll find Endocrinologist, Diabetologist, but no one whose job it is to specialise in "thyroid".
GP's are expected to deal with Hypothroidism without any endo involvement unless they hit problems . Hyperthyroidism usually involves endo, but only until the offending thyroid has been removed / disabled and people rendered hypothyroid ... then they are usually given back to GP to manage.
Some private endo's are good , but some are no better at thyroid than NHS are. The title Endocrinologist is no guarantee of any skill in treating thyroid ....so we need to research who we are seeing and ask for others experience with them..... other wise it can just be a very expensive way to get fobbed off/ mismanaged.
Making sure we get optimal thyroid treatment and an understanding about what is happening to us often turns into a DIY endeavour to some extent... anything from learning enough to understand what the GP 'should' be doing , so we can challenge intelligently when they are not .... to some of us eventually sacking them off completely and doing a better job of managing ourselves without their help.
Oh goodness I’m not looking forward to dealing with that, seems ridiculous we don’t have specialists in the sector. I’m grateful for platforms like this as I’m the sort of person who wants to understand and be educated of the reasons for what’s going on or how they’ve come about. I’m a strong believer in knowledge is power but I must admit, it does feel ‘Alien’ to argue with a medical professional.
don't worry .... it gets easier to speak up knowledgeably with confidence once you see 'the emperer has no clothes' ... in my case, i found my voice after i had followed GP dose instructions dutifully and blood results did opposite of expected and left them scratching their head for explanations ( well actually they didn't bother to do any head scratching , they just asked me 5 times if i had misunderstood the dose instructions ... i hadn't) , or another time my GP insisted on changing levo dose when i was feeling ok , (saying i'd die if i didn't) and it made me feel worse and buggered up my life for several months , and the (same GP) then said "ok , i'll put dose back to where it was, i don't want to make you unwell , carry on if feeling well" ( i didn't die and fT4 came back ito range by itself some months later )
and hey... you never know, you might be lucky and have a GP who does 'reading' and 'thinking' ... so give yours a chance .
We inevitably see the worst of it on here..... but lots of people do fine and many GP's are 'good enough' at managing it.
vitamin D
How low was vitamin D in 2021
Have you been retested since
How much vitamin D are you currently taking
NHS Guidelines on dose vitamin D required
panmerseyapc.nhs.uk/media/2...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly when supplementing
Can test via NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Thank you for the information. I don’t know the actual figure for the Vit D level in 2021 I will ask the GP on Monday. I do remember that it was extremely below range. At that time the GP told me to take over the counter Vit D supplement for 4 weeks to boost level which is what I did. So I haven’t taken any since. I also do not take any other supplements as I wasn’t aware I needed to but I will of course do whatever is necessary to help regain the person I once was.
I do remember that it was extremely below range. At that time the GP told me to take over the counter Vit D supplement for 4 weeks to boost level which is what I did. So I haven’t taken any since. I also do not take any other supplements as I wasn’t aware I needed to but I will of course do whatever is necessary to help regain the person I once was.
If vitamin D was below 25nmol GP was obligated to prescribe a LOADING dose of 300,000iu in total over 6-8 weeks
That’s 5000iu per day for 8 weeks or 7000iu per day for 6 weeks
And vitamin D level should have been retested at end of prescription
If Vitamin D was between 25nmol and 50nmol GP should have prescribed 2000iu daily for 6 months
And with any low vitamin D you should have been advised to take ongoing daily maintenance dose vitamin D
Typically that’s going to be between 2000iu daily and 5000iu daily
Aiming to maintain at minimum of 80nmol
ALWAYS test at least annually
Ideally twice year. May need higher dose in winter than summer
likely other vitamins are low as well
Low vitamin levels are DIRECT RESULT of being hypothyroid as it causes LOW stomach acid and thus results in poor nutrient absorption
Many GP’s completely unaware of the gut and low vitamin connection
Essential to maintain GOOD vitamin D, folate, B12 and ferritin levels on levothyroxine
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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
cks.nice.org.uk/topics/hypo...
bnf.nice.org.uk/drugs/levot...
nhs.uk/medicines/levothyrox...
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
50mcg is standard starter dose levothyroxine. Retest 6-8 weeks after each dose change. No point testing earlier
Increase in 25mcg steps
Typically takes 6-12 months for levels and symptoms to improve
Some people need a bit less levothyroxine than guidelines, some a bit more
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).
I bet it happens more often than we realise! The endocrine system is very fickle.
I don’t know the actual figure for the Vit D level in 2021 I will ask the GP on Monday.
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.
This currently only applies in England, not across the whole of the UK.
Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still 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.
Strongly recommend you get copies of all your test results from at least 2021 …..preferably also at least 5 years before that
You might be amazed at results
How old are you
Any significant changes around 2021
Autoimmune thyroid disease often starts after hormonal changes……eg soon after pregnancy or around menopause,
I’m 47 now, not too sure about menopausal hormone changes due to the overlap of symptoms. My last child was born in 2013. I started noticing the symptoms after I had surgery Feb 2020 - I had ACDF surgery due to ruptured disc in my neck which inverted into to my spinal cord following a car accident. Again I wrongly attributed a lot of symptoms due to the surgery and needing to give myself time to heal from injuries sustained in the car accident. However I haven’t been able to find any evidence to suggest a connection to the surgery unless anyone here knows something different.
Whiplash can cause hypothyroidism
bbc.co.uk/programmes/articl...
Other things that can potentially affect the thyroid gland are stress, nutritional deficiencies, glandular fever (it is possible in some cases that the virus causes damage to the thyroid gland), major trauma such as car accidents (e.g whiplash), trauma around the gland itself, for example any major surgery
Also anaesthetic can significantly lower B12
Peri-menopause often exacerbates thyroid issues
Also your surgery may have caused thyroid issues
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Thanks. Will look into these
