Thyroid levels in April was TSH 6.5 GP wasn't concerned despite me having a small swelling in my neck and hair loss, fatigue, weight gain, muscle and joint pain as well as gastric issues she said I was subclinical. This information was given to me over the phone as the Pandemic had hit and my GP surgery was only seeing urgents. She did however refer me for a neck ultrasound which again has been placed on hold due to the Pandemic. I had repeat bloods last week results were a bit better TSH 4.21 however I've tested positive for antibodies. In light of this she felt it might be a good idea to place me on 25mcg Levothyroxine. When should I be retested to check my levels? and is there anything else I should be pushing to have checked? My symptoms first started about 4 years ago. Thanks in advance for any advice and information
Hi all new to this community thyroid antibodies - Thyroid UK
Hi all new to this community thyroid antibodies
Forgot to add the figure she quoted me over the phone was 168.7 for the antibodies
Hi Katrina999666, welcome to the forum.
'Subclinical' is a much over-used word in medicine, used by doctors when they don't want to diagnose something - usually hypothyroidism. But, it's mis-used. Sub-clinical means that you test positive in a blood test but don't have symptoms. That use it to mean 'your TSH isn't 10 yet, so I can get away with not diagnosing you'. Technically, you are hypo when your TSH gets to 3.
The high antibodies mean that you have Autoimmune Thyroiditis - aka Hashi's - which is a disease where the immune system slowly destroys the thyroid. It's common to see levels jump around like that with Hashi's, but it doesn't mean there's any improvement in your condition. Hashi's is for life, it doesn't go away.
Having said that, did you have both blood draws at the same time of day? TSH is highest early morning, and drops throughout the day. So, if you want to compare results, you need to always do your blood draw under the same conditions. We always recommend early morning - before 9 am - after fasting over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. Tests should be done six to eight weeks after starting a new dose.
As to other tests, full testing includes:
TSH
FT4
FT3
No point retesting antibodies now you know you have Hashi's
vit D
vit B12
folate
ferritin
Hypos often have low nutrients due to low stomach acid, but you need optimal nutrients to be able to use the hormone you're taking.
At the moment, with your high TSH, it's obvious that your FT4 and FT3 are going to be low, so not much point in testing, yet. But, when your TSH gets down to 1, or below, you do need at least the FT4 tested - but preferably both. Never allow your doctor to reduce your dose of levo simply on the grounds of a low TSH - which is all they want to test. A TSH alone is not a good indicator of your thyroid status. It's the FT3 the most important number because T3 is the active thyroid hormone - T4 is basically a storage hormone, and TSH is a chemical messenger between the pituitary and the thyroid, but is not reliable.
Hope I haven't swamped you with too much detail. 
Wow so much great information thank you for taking the time to reply. I think I will ask for a copy of the blood work they did on my Thyroid to see what the actual figures were.All she told me was T4 13.5 TSH 4.21 and Antibodies 168.7. I will need to now familiarise myself with the fact that I have Hashimotos which again she did not specify only that I most likely will go onto develop Hypothyrodism in the future so glad I found this site. Why do they want to try and reduce the levothyroxine ? I did have the bloods drawn at the same time before breakfast but did read somewhere that you should stop the multi vitamins a week prior to having bloods drawn so I did that prior to the 2nd bloods being drawn. I am taking a multi vitamin every day again.
Ah, well, multi-vits are a whole other can of worms! Not a good idea, because...
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.
* The magnesium you take - and just about everybody need to take it - should be chosen according to what you want it to do:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D.
The reason you should stop it - should you be taking one - is that it is bound to contain biotin, and biotin can sometimes skew blood test results. So, all things that contain biotin should be stopped one week before the blood draw.
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 with autoimmune thyroid disease also called hashimoto’s diagnosed by high thyroid antibodies
Ask GP to test vitamin levels
Bloods should be retested 6-8 weeks after each dose increase
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, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Thank you I will ask for the vitamin check at my next appointment are these private firms reliable? I don't mind paying for a test to check to give me a clearer picture
You will see on here thousands of members forced to get full testing privately
Private companies often use same labs as NHS to process results
healthunlocked.com/search/p...
healthunlocked.com/search/p...
healthunlocked.com/search/p...
Tips on how to do testing with DIY finger prick test
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 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
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...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/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
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
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.
Thank you so much for that information I have lots now to read to inform myself
Hi welcome to the forum! Excellent advice as ever from greygoose and SlowDragon . My experience a couple of months ahead of you this year mirrors yours almost exactly re sub-clinical test results and antibodies showing Hashimoto’s. I’m glad your GP has prescribed you some Levo as many won’t until your TSH reaches 10. I started on 50mg but found it was too much in one go so dropped to 25mg by cutting tablets in half which I stayed on until my 8 week review. I was expecting a dosage increase but my GP was happy to see my TSH back within normal range so prescribed 25mg tablets until a recheck in 6 months. This seems to conflict with much of the advice I’ve picked up here which suggests that most people feel better when their TSH drops to 2 or below. I expect my GP was taking the fact I felt overmedicated (racing heart, insomnia, tired but wired) on 50mg into account.
I can’t stress how important it is to know and improve your vitamin levels if need be. I was severely anaemic but had slacked off taking my iron as starting on Levo disrupted my routine (you have to wait 4 hours after taking it before taking iron). I’ve noticed a significant difference in how I feel now I’m back on the iron again and still have a way to go.
I’m sorry your scan has been delayed and hope you get some news about that soon. Your GP should be reviewing your bloods again in 6-8 weeks - you may need to use the magic words blood test for thyroid and Levothyroxine with receptionists if they tell you they aren’t booking routine blood tests.
Thank you for replying she did in fact state that Nice guidelines don't recommend starting on levothyroxine unless you have a result of 10 TSH but because I have symptoms and now tested positive for antibodies that it might be beneficial for me to have started on the levothyroxine. She was keen to start with a low dose so 25mcg which I have after reading up on decided that it might be better for me to take at night before bed unless anyone can shed light that I shouldn't ? that way it doesn't interfere with any other medication or my routine. It's good to hear that someone has been down the same road and that it seems to be making a difference to you being on the medication. I have put in my diary to call and make an appointment for the 6 week period and I won't take no for an answer from the receptionist lol
Noticed in your other post mentions breathlessness
Breathlessness can be due to low iron or ferritin ...extremely common when hypo
Thanks SlowDragon I decided to start taking a multi vitamin for hair skin and nails which has Iron in it too so I'm hoping that helps. GP did FBC and the haemoglobin was 13.9 so she was happy with that. I've tried to find levels for Thyroid antibodies to see where my result sat at 168.7 whether that was high medium or low in the scale of things as a result?
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