So I had lots of symptoms so asked gp to run thyriod and they only tested TSH level.
Paid for a private and got the below results.
Just spoke to my doctor who agreed to trial me on thyroxine to then get a phone back 5 minutes later to say she check with another doctor and my ranges arnt bad enough to actually have any treatment and to wait to see if I get worse.
I’m stuck on what to do. I’m sick of feeling like crap 
any advise ?
High thyroid antibodies confirms autoimmune thyroid disease also called hashimoto's
Vitamin levels are low as direct result of being hypothyroid
B12 is extremely low
Folate low
Request GP test B12 and folate and test for pernicious anemia...
NHS B12 test is serum B12 test - range is typically 200-680
Likely to see serum B12 below 300
Vitamin D is insufficient and GP should prescribe 1600iu vitamin D every day for 6 months
Is it worth going back to the GP and pointing out that you feel dreadful -and this is likely because
* TSH is over-range
* free T4 is a very feeble 11% through range
* antibodies are high indicating Hashimoto's, the biggest single cause of hypothyroidism
At the very least will she re-check your bloods in 6 weeks and prescribe a "starter" dose of levo if you are still over-range on TSH and antibodies are still high? Then make sure you get a very early blood appointment - no later than 9am - when TSH is highest
Good luck x
Thank you! They have agreed to test me again in two months :’( ... going to pay for the private again and do it on the same day as GP !! May not be able to get a Gp appointment first thing and have read that’s the best time !! Xx
Has GP prescribed vitamin D?
If not.....make sure they do
Your GP should also be testing B12 and folate NOW
B12 deficiency can cause significant damage
Low B12 symptoms
b12deficiency.info/signs-an...
Nope! Said they didn’t believe it was low enough to worry about and just go to boots and buy vitamin D and try and sit outside more xx
So your first steps is to improve your low vitamin levels by self supplementing
Only add one supplement at a time then wait 10-14 days to assess before adding another
Suggest vitamin D first - 2000iu or 3000iu daily
Then look at adding vitamin B complex and after that a separate B12
NHS guidelines (NICE) for treating subclinical hypothyroid with symptoms require{- 2 X over range (but under10) TSH results 3 months apart. before they can consider Levo.
The presence of over range TPOab confirms the cause of hypothyroidism (autoimmune) , and this has a higher risk of the patient going on to become 'overtly' hypothyroid in time, so raised TPOab will make the more likely to consider treating with Levo once they have 2 over range TSH's.
How long ago was your previous NHS TSH of 2.5 ish ?
It looks like they are willing to accept your private blood results as genuine ,(as the GP considered offering Levo ), but they then found out that they are not allowed to give Levo without getting 2 over range TSH's 3 months apart... So What next? .. unfortunately you have to wait a bit longer and then give them the evidence they need to start prescribing....ie. another NHS test with over range TSH .
They may be a bit negotiable on the '3 months' bit .. but if you push it too soon they may just use the fact that it's not been 3 months to get themselves off the hook and make you wait longer anyway.
Thank you! They agreed to tests me again In two months ... that test was beginning of May! .. will pay for the private again to do on the same day! Xx
Meanwhile you must improve low vitaminsSelf supplement if GP won’t treat
Was this test done as early as possible in morning before eating or drinking anything other than water
This gives highest TSH
Working on improving low vitamin levels will significantly reduce symptoms and may increase TSH so you can get treated
Low vitamin levels tend to lower TSH
Low B12 and folate
Active B12 below 70 is suspect for B12 insufficiency
Ideally do NOT start supplementing any B vitamins until GP run further testing for pernicious anaemia and low B12 and folate
Once ready to start supplementing
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
healthline.com/nutrition/me...
Hi SlowDragon,
Yes the private was first thing (7am) whereas my gp one was 4pm .. very hard to get appointments at my GP!
They won’t run any other tests as they don’t believe they are low enough to warrant doing anything.
Have agreed to retest my thyroid in two months ! Will pay for a private again though to do on the same day at 7am again !
Thanks for all your advice !! Xx
If the NHS won’t treat you, could you consider going private. Your test results indicate you have Hashimotos. I very much doubt it’ll go away. I was in a similar position. I kept going back to my GP as I felt awful. They just kept sending me away with no treatment and wouldn’t check my bloods. Eventually, years later, they checked my thyroid bloods and my TSH was now 36. I had Hashimotos all along. No apology, nothing from them, even though I was living a half life. I was put on Levothyroxine and started to feel better however, I later found out that I’m a poor converter of Levothyroxine T4 to active T3 and became even more unwell. Once again eventually I was trialed on T3 medication. Now after 20 years and finally going private I feel the best I’ve felt in decades. So, my advise would be to go private and get it sorted sooner rather than later if you can. My experience of the NHS GP’s and Endocrinologists are appalling. It only took 2 consultations privately and I was diagnosed and finally helped. It only cost me £650 also. Previously I thought it would cost thousands. I was very wrong.
I went through all this, and because my TSH was up and down, sometimes within range because of hashimoto's I was refused treatment by the GP and also the Endo who told me there was nothing wrong with my thyroid with TPO antibodies at 175 because the TSH on that one occasion was 1.85, even though every other test it was around 4,5 - 4,8. I decided to treat myself, got D3, iron, B12 and folate optimal and then started taking Thyrovanz about 18 months ago.
Well done for fighting for yourself and giving the doctors proof that you deserve treatment. I am so sorry about the you have to wait response. I've been there too, and it's devastating to hear. Do whatever you can to see a different doctor, whether it be getting an appointment with an NHS endo or a private endo or a naturopathic doctor. You want someone that understands what the antibodies are doing to you. There are also dietary changes and supplements that many (but not all) have found useful in getting their antibody levels down. I'm not sure if you've tried any of those.
It’s exactly what happened to me. Honestly, even our numbers are matched. My GP referred me to an endo who told me we’d wait and see. And that being tired wasn’t because of my thyroid but because I was the mother of a young child 🙄
Anyway, I went private in the end. If it’s a possibility for you, it’s worth a try. I responded well to levo though (so far), but I know it’s not the case for everyone and adding T3 is very pricey on a private basis in the U.K.
Ahhh yess I have a (just turned) 3 year old and feel so guilty for having no energy and feeling like crap! I’m only 27 it sucks !! I’m definitely going to look at going private !! Thank you!! Xx
As McPammy has mentioned, you may need to consider going private. Also to mention, if you need to have T3 added down the line, it might be advisable to have the dio2 gene test. If you don't convert thyroxine well, T3 should be added and the cause could be the gene defect. As I have the gene defect, I now have T3 prescribed through the NHS but I needed to self refer to a private endocrinologist initially.
All the best 😊
I am so sorry you are going though this. The others have given great advice. I also was left incredibly ill on a TSH that lingered just inside the range. I struggled to work and got sent home several times as I looked so ill and my face body took on the typical features of a person with hypothyroidism.....but doctors wouldnt recognise this as theyre not trained to notice the classic signs. The nhs answer to my ongoing decline was to diagnose CFS! This was years ago before the dreaded TSH over 10 came in. Even when I was finally diagnosed as hypothyroid the doctor had no idea how to treat me and left me on a starter dose for a year! So I saw a private doctor who was brilliant.
One word of caution if you go private pick the practioner very carefully as they are mixed bag too am afraid. Your GP will need to refer you. Id put a seperate post up asking for recommendations.
Ohh thank you!! Yes after I got the gp results back which were 2.5 and therefore ‘In range’ they said I had CFS !! But I wasn’t taking it so I paid for a private test !! Xx
I was like u last week. 5 years. My tsh was just over 5. T4 just in the range at bottom. Antibodies 100. She was going to just wait and see. I told her I had enough I wasn't prepared to wait for NHS to catch up. She agreed to trial me with accord after I said I was going to self medicate.
Hi Jump1
Wow ! Well done ! Hopefully the medication will help! I was on cloud 9 when they agreed to trial me on meds for 3 months and cried when they rang back and said actually no! I have MOST of the symptoms and they just won’t listen they referred me to a social prescriber who agrees everything im doing to lose weight and be healthy is brilliant and then they tried to diagnose me with CFS as they couldn’t work out what else it could be! I’m 27 with a (just turned) 3 year old ! I don’t want to feel like this xx
If I didn't say I had enough and told her I wasn't prepared to let my well being deteriorate for another 5 years and was now going to self medicate she wouldn't have. I have to say though I got all my vitamins high so couldn't say it might be this or that.
what to ask GP
Banning T3 - what do you do next ? 
What Next?
What next! 
