hi there. Lovely to “meet” you all. For the last two years I’ve felt awful. I’m 56 and in that two years I’ve been diagnosed with microscopic Colitis. I then started experiencing aches, pains, stiff joints and basically feeling old before my time. I’m also getting so fat and even 3 months of strict slimming world hasn’t helped. I’ve had bloods done every 3 months in the last two years as my thyroid levels have been off kilter. They basically are always around Serum TSH level 6.50 mu/L (0.35 - 4.941); Serum free T4 level 10.0 pmol/L (9.0 - 19.11). Last week my GP added in Serum thyroid peroxidase antibody concentration and this came back at 173.9 ku/L [0.0 - 34.0]; she said it looks like I have sub clinical Hypothyroidism and has started me on 25mg of Levothyroxine. I’m struggling to find what it means to have Serum thyroid peroxidase antibody concentration at 173 when it should be <34. Can anyone tell me what it actually means please? Thank you so much.
Serum thyroid peroxidase antibody concentration... - Thyroid UK
Serum thyroid peroxidase antibody concentration 173.9 ku/L
TPO antibodies are elevated in autoimmune thyroid disease - Hashimoto's. (Can be elevated in other circumstances but this fits.)
You will see many discussions about how much the number matters. But the prime point is that it is very clearly positive. Whether it is 50, 100, 200 - really doesn't make any difference.
Your TSH at 6.50 is - as you obviously realise - over the reference interval. But there is an extreme reluctance to treat until it goes above 10. (We can understand why a single test, just above, should not see medication started. But repeated tests, along with FT4 low, over months or longer, seem sufficient to most of us.)
One of the problems is that you should have been started at 50 micrograms.
25 micrograms can be enough to lower the TSH a bit. But that reduces the amount of thyroid hormone your own thyroid makes. And sometimes it appears that reduction is by around the equivalent of 25 micrograms - possibly even more. Thus you can end up with a lower thyroid hormone level despite taking levothyroxine!
thank you so much helvella! So do you think I have Hashimotos? That wasn’t mentioned. She said she would start me at 25mg but was very reluctant to be honest to do it at all. I think because I feel so rotten and tired she thought it would be worth a try.
The term Hashimoto's isn't favoured by most UK doctors. But, yes, you do have it.
Ideally you should also have had tested some other things. Full Blood Count. Vitamin B12. Folate. Iron (especially ferritin). Vitamin D.
In general, people should expect to return to their GP and get another thyroid blood test after about 6 weeks. And get their dose increased!
You do indeed have Hashimoto’s, 🤗 UK GPs call it auto immune thyroid disease, but US and patients in UK call it Hashimoto’s. I’m 49 and had a similar experience to you. I remember feeling validated after years of odd symptoms and feeling like a hypochondriac. I started on 25mcg too lots of us are started on that dose, my advice is to push for increases every 8 weeks after blood testing. Aim to get TSH under or around 1. I didn’t feel close to ‘less shit’ until it was 1.4 symptoms properly improved when it was lower still. There is a NICE guideline that suggests around 1.6mcg per kg of body weight is about right but not a strict figure, more a ball park, we are all different. I’ll be honest I was worse before I was better and put on 10kg almost immediately even with a super healthy diet, I have since lost it. What I am trying to say is brace yourself it takes months to start feeling like you are actually recovering. You will get amazing support and links to more reading here. There is so much to tell you but one thing at a time. Which brand did you get? Are you gluten/dairy intolerant? Gut health conditions are common in autoimmune. Your vitamin levels are likely to be very low, did the GP offer any tests? Lots of us test privately to keep on top. Ask lots we are all here to help each other 🌱
thank you for replying and I’m sorry you’ve suffered too! I get what you mean about feeling validated. I had the same thing when I started having tummy problems, kept saying it was IBS. I’m lucky to have private medical through work so I had a colonoscopy and they found Colitis. I finally didn’t feel like a time wasting fraud!! My vit D was at 21 six weeks ago (should be 50-120 I believe) so I had tablets for that. I’m not gluten intolerant I think I was tested for that. I am bracing myself but I’ve felt awful for so long I can hang in for a little while. I’ve attached a pic of the tablets. Thank you again 😻
hi helvella… how bizarre… when I had my last bloods my Vitamin D was at 21nmol/l (50-120) so she gave me 6 weeks of tablets but hasn’t repeated that blood test or suggested B12. I have private medical insurance with my work, wondering if it’s worth having a chat with an endocrinologist. Thanks ever so much for your help I really appreciate it. Any more advice is greatly appreciated.
Request GP test folate, B12 and full iron panel test including ferritin
You also need coeliac blood test at diagnosis of Hashimoto’s
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
thank you! After everything everyone has told me on here I’m seriously thinking of seeing an endocrinologist privately as I’m feeling some things have been “missed”
No point yet
Get vitamins tested
And levothyroxine dose increased up after each blood test
Standard starter dose levothyroxine is 50mcg
Starting on low dose can initially make you feel worse…..
book retest for 6-8 weeks time …..always test early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
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
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £31 via
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
if GP is difficult about increasing dose
List of thyroid specialists and endocrinologists
healthunlocked.com/thyroidu...
thank you so much SlowDragon I’m going to look at this all 🥰
what many GP’s (and some endocrinologists) fail to understand is that levothyroxine doesn’t “top up” failing thyroid ….it replaces it
Due to feedback mechanism of TSH…..when we start on levothyroxine, TSH reduces and therefore your own thyroid takes a rest and makes less thyroid hormones
Over next 6-12 months dose levothyroxine will be slowly increased upwards in 25mcg steps
Bloods should be retested 6-8 weeks after each increase.
With Hashimoto’s, especially with low vitamin levels it’s frequently necessary to start slowly, rather than go In straight away on full replacement dose
But as your body adapts and recovers and metabolism improves dose can be slowly increased
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.
thank you 🥰
Low/deficient vitamin D is virtually guaranteed as result of autoimmune thyroid disease
How much vitamin D were you prescribed
Vitamin D under 25nmol is deficient
GP should have prescribed a total of 300,000iu over 6-8 weeks
Known as a LOADING dose
Vitamin D level should be retested at the end of prescription
You will need ongoing daily vitamin D indefinitely as a maintenance dose …..trial and error what that dose might be
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
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 via NHS private testing service when supplementing
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...
Another member recommended this one recently
Vitamin D with k2
amazon.co.uk/Strength-Subli...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
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...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
wow thank you! I’ve learned so much tonight! Yes that’s the dose she prescribed for 6 weeks, 2 tablets once a week. Didn’t repeat the blood test for that though whack may be strange. Appreciate all the links, thank you!
hi there. I think a lot of what you are experiencing (aches and pains, weight gain, feeling old ……) is down to menopause. I had no idea how badly women are affected by it until I saw my friends suffer and then I went through it. Many women go through countless medical examinations and put on drugs and anti depressants because they don’t understand what’s going on. One in ten women actually have to stop work because they fall apart physically and mentally. This on top of trying to balance your thyroid (I am under active and this started when I hit oerimenopause). So my advice is as well as trying to balance your thyroid it’s hugely important you now look after yourself - (exercise and a healthy diet is the best thing for thyroid as well as taking the meds) and fry your oestrogen, progesterone and testosterone checked and get on good bio identical HRT. It will take time for everything to balance but you’ll begin to feel hugely better.
thank you Gcstewart I’m sorry you’ve suffered. I went through menopause in my early 30s after a hysterectomy, I’m not sure if it’s possible for it to raise its ugly head 20 years later? Luckily it was over with pretty quickly. And I didn’t suffer too much. I’m really pleased that menopause is becoming so high profile now and women are getting the support they need. X
the problem is that women think you go through it and it’s finished. The reality is we have to think about it as ‘living with or without hormones’. The effects of living without hormones doesn’t end and gets progressively worse through the decades
Hi there! I'm from the US. I strongly advise anyone with Hashimoto's to give up gluten and possibly dairy, mostly milk. Cheeses are usually ok. Gluten is a huge contributor to problems with Hashimoto's. It's proteins are very close to thyroid tissue and the body will attack the thyroid. Most people and I mean MOST will see a huge symptom improvement! Especially the body aches and pains. I was able to reduce my medication dose from doing this plus fasting and low carb. I was on 125 and now I'm on 76 with a low T3 added. I'm slow reducing as I keep getting hyper symptoms. I'm healing.
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