Hi all,
Finaly got my full thyroid test done via medicheck. Have had really bad fatigue, anxiety, OCD/intrusive thoughts, joint pain, and other things for a while now.
TSH - 4.3 [0.27 - 4.2]
Free T3 - 4.9 [3.1 - 6.8]
Free Thyroxine - 20.2 [12 - 22]
Thyroglobulin Antibodies - 388 [0 - 115]
Thyroid Peroxidase Antibodies - 117 [0 - 34]
Could this suggest some sort of autoimmune thyroid condition?
Thanks!
hey Griffo_
Good work getting a private test.
Are you on any thyroid hormones at present?
Yes you definitely have autoimmune thyroid disease (the name Hashimoto’s is commonly used here and in US). NHS refer to it as Autoimmune Thyroid disease or AITD.
Your symptoms sound familiar.
To get an NHS diagnosis I would recommend showing these results to a GP and asking for another round of tests in 12 weeks to confirm and proceed with treatment.
Sadly not a quick fix, steal yourself it will be months before you feel better, but I can say from experience it can be done.
You will get tonnes of brilliant practical advice here, I’ve done everything the amazing admins told me to do and really am recovering well. Hang on in there 🌱
thank you for the response! I’m not currently on any thyroid hormones. Drs just want to switch the SSRI I take!
yeah mental health is a biggie amongst us Hashi’s. You will feel better eventually with the right dose. Testing early morning is usually the highest TSH and you want the highest for a diagnosis.
I have heard of a member that struggled to get a GP to diagnose but had success via a psychiatrist. Try GP first though much simpler. If you log into the forum on a desktop or laptop you can see ‘pinned posts’ look for one by tattybogle that has all the papers and amunition you need to convince GP for a trial of thyroid hormones. But yeah, still need two tests over range 3 months apart to get that.
In the meantime you can do yourself a favour by raising vitamin levels.
Did you get the advanced thyroid from Medichecks?
Your D, B12, folate and even as male possibly ferritin. All likely to be low in autoimmune as gut health is affected so even with a super healthy diet you won’t be absorbing the good stuff. I’m super outdoorsy and my D was on the floor, improving these improved your absorption of thyroid hormones when you eventually get them and all help with the aches pains and MH.
🌱
I had two previous tests on the NHS and TSH was 5.1 and then 4.67. This is the first complete blood test i've had done.
Here's the rest of the results:
CRP HS - 0.378 [0 - 3]
Ferritin - 97.7 [30 - 400]
Folate - serum - 35.9 [8.83 - 60.8]
Vitamin B12 - >150 [37.5 - 188]
Vitamin D - 87.9 [50 - 250]
ah ha! you have the evidence you need then with those antibodies, see Tatty’s post for the NICE guidelines, ideally you should be started on 50mcg Levothyroxine as a starter dose and reviewed 6-8 weekly for titrations upwards. If your adrenals have been taking up the slack it can be a ‘worse before better’ scenario as you replace the thyroid hormones. If you present this knowledgably to the GP they generally agree to a trial and then you are off and running. Let us know how you get on!
Vits how old are these?
CRP is an inflammation marker, that is over range. Ask them what they suggest for that.
Others not terrible but you will feel better with them nearer the top of range.
Keep asking questions, loads of us here to help 🌱
This blood test was from the 17th, so only a couple of days ago.
Will get on to the drs tomorrow.
Hopefully getting this sorted will mean I won’t have to take an anti depressant after being on them for around 15 years!
Hi Griffo_
so your results are classed as 'sub-clinical hypothyroidism ' :
'sub-clinical' ~ means "the TSH is over the lab range, while the thyroid hormone (T4) is still within range."
(TSH ~Thyroid Stimulating Hormone ~ is just a signal asking the thyroid to make more thyroid hormones ( T4 / T3)
if hypothyroidism gets bad enough that the fT4 is under range as well as the TSH being over range , then it's classed as overt hypothyroidism .
A one off slightly TSH result can be just that ~ a one off ~ but if it is over range consistently for (2 tests taken 3 months apart) , and if the patient has symptoms that could be due to hypothyroidism , then NHS guidelines say GP's 'can consider' a trial of replacement thyroid hormone . (they are not told they 'should' treat it until TSH is over 10)
They prefer TSH to be over 5 before they consider it ... your latest medichecks TSH result is very borderline so you might have a hard time persuading them to give you a trial of levo just yet ,because not only is your TSH is borderline , your thyroid hormone level (fT4) is still very good at the moment... so realistically depending on the GP you see ,and how persuasive you are , you may have to wait a bit longer until TSH goes a bit higher.
They are more likely to agree to treat when TSH is under 10 if they find positive TPOab (Thyroid Peroxidase antibodies = markers showing autoimmune thyroid disease is present )
You do have a positive TPOab result , and you do have an NHS history of TSH results that look likely to be just over range 5.1 then 4.67 , but you'd need to get hold of the lab ranges that came with those results to check if they were actually over the top of the lab range or not .
if they are over range , then GP 'could consider' giving you a 6 month trial of levo to see if it improved your symptoms.
Here is the NHS guideline that allows that :
nice.org.uk/guidance/ng145/...
1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
GP will probably want to do their own test to confirm TSH is still over range, and they can't accept medichecks results for diagnosing .... try to get an Early A.M blood draw for GP TSH test ... they won't agree it matters , but TSH is naturally higher at 8/9 am and falls gradually to it's lowest between 1-3 pm each day ..... you want to take all TSH test at similar time of day so you can compare properly to previous test .
eating breakfast cam lower TSH a bit in some people too ,
So for consistency and to get highest TSH level , a 9am/ fasting test is best.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
if you are offered a trial , you may find need this post later to get GP to agree to increase your dose appropriately : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-
thank you so much for your reply 
Also one thing to note is that the week leading up to the blood test I was extremely anxious and wasn’t eating very much. I read that this can lower TSH levels, or is that only likely if you ate nothing / had completely starved for days?
there is a US dr Eric Balcavage who runs the Thyroid Answers podcast, he has loads of interesting guests, one thing he bangs on about is physical stress eg illness/ workouts etc. and psychological stress all contribute to autoimmune responses and consequent thyroid physiology. Worth a listen, I learn so much from him interviewing others and chit chatting about various aspects in detail.
Doesn’t answer your question specifically but might help. Lots of things can affect TSH, I’ve read that iodine can make it go up and or example when I was diagnosed I figured out if I tested in the fourth or first week of my menstrual cycle my TSH was higher.
couldn't say for sure .. i know that severe calorie restriction has been shown to lower TSH a bit ,,, but what counts as 'severe', and how long it would take to have an effect on TSH i don't know .
personally i doubt 'a few days of eating less than usual' would be enough to have any significant impact ... whereas i would think a couple of months of one slice of toast and an apple a day might well do .
Managed to get a Dr appointment next week on Thursday so hopefully getting closer to being sorted out
tattybogle Regenallotment
Looks like you were both right. Doctor wants me to do one of their own blood tests and this time has requested "Anti-Thyroid Peroxidase Abs, TSH".
Told him my symptoms and he made a note of it. Also still recommends I switch my SSRI as the new one will be more suitable to anxiety.
He said that if it comes back with antibodies with their blood test, he will get the opinion of an Endocrinologist.
I mentioned that I thought about going to see an Endocrinologist out of my own pocket and he said they'd probably want to do their own tests anyway as well.
I guess I'm one step closer?
For my next blood test, should i stop taking my Vit D and B12 supplement, or does that not have any impact on my Thyroid antibodies and TSH?
He kept banging on about TSH!
Thank you so much everyone for the help so far - this forum is incredible!
Anti-Thyroid Peroxidase Abs = Thyroid Peroxidase antibodies = TPOab (all same thing)
you can expect these to be over range on GP test whatever you do , time of test doesn't matter for this test .
TSH (Thyroid Stimulating Hormone) ...... for next blood test :
make certain you get early 8/9 am ish appt ....even if you have to wait a few weeks for an appt at that time .
Do not let them do a lunchtime/ afternoon TSH test , especially not this time .....a small difference in TSH could be the difference between endo saying "send him away" or "ok try him on some levo"
Do not eat breakfast / tea /coffee before the test. just have water.
Vit D and Vit B12 ... if there is no Biotin in them you can continue as usual .. it's the biotin in supplements that can make blood tests inaccurate ( eg the supplement you asked about the other day contains 50mcg biotin , so if still using that leave it out for 3 days before testing.
Brilliant - thank you for the response. I've stopped taking the multivitamin and I have gone back to what i was taking before:
50 mcg Vitamin B12 daily
1000 iu Vitamin D3 daily
I've booked my bloods in for 8:15, so will be super early
Thanks again!
tattybogle Regenallotment
So I rang the Dr today to get my results. The antibody result isn't with them yet, but i got these ones:
TSH: 6.30
T4: 12
I asked if there was any other numbers / ranges and the receptionist said there was nothing else? Seems strange.
So looks as though my TSH is showing that it is trending upwards from 5.1, to 4.67, to 4.3, to now being 6.30. We also now have the high antibody results, which i'm pretty sure will also show on the test the Dr has done. Should have those results on Monday (which is when the Dr i want to speak to is next in).
And they just keep wanting me to try a different anti-depressant?! Well, a different doctor to my usual one did, anyway. He just dismissed my thyroid concerns and also said taking the private test will be wasting my money. Turns out he was wrong, eh?
Hi so TSH 6.3 will definitely be over range. the highest TSH range i've ever seen went up to 6 ,, and that was yrs ago ,.... most TSH ranges now have a top end of 4.somthing , occasionally 5.something ( one is 3.somthing )
fT4 12 ... could be pretty low , many fT4 ranges are about [12-22] , or [11-23 ish] ( however there is one that is [7.9 - 14] in which case 12 is not low)
Receptionist saying 'there are no other number/ ranges' translates as 'i don't understand much about blood tests, i can't see the range on my screen, and i don't know where to find it , and i'm busy , bye bye '
There is ALWAYS a range for TSH tests and fT4 tests (and fT3 tests) and the lab always gives it to GP with the result... (so the GP knows if the results are over range or not) ... if you get fobbed off with that guff next time , smile nicely and ask them to go and find someone who does know how to find the ranges.
I had receptionist telling me there were no ranges in my early days, that is BS, but she/he probably doesn’t know that.
If you can find a number for your local hospital pathology lab you can call them and they’ll confirm the ranges on the machines they use it is worth knowing.
For arguments sake let’s use a range we see commonly (they can differ).
TSH upper range commonly 4.2/4.6/4.8 so you are over and your pituitary is shouting at your thyroid to make more T4.
FT4 lower range is commonly 12 upper 22 but they do vary, yours is rock bottom if it’s a similar range to this. The way I see it, the thyroid has got it’s fingers in its ears and isn’t responding to the pituitary.
Well done sticking up for yourself and finding this stuff out, if it were me I’d definitely be thinking I have a case for fixing thyroid before trying different antidepressants.
If those were my numbers on the ranges from the labs I use I would be really unwell, unable to function normally and back where I was at the start of my diagnosis when I needed CBT for anxiety and depression.
I’ve got everything crossed for you, high fives for finding out . 🌱
Thank you for all your helpful advice (and everyone else)!
I appreciate how you have explained how my pituitary and thyroid are trying to communicate, as it can all get overwhelming when trying to work everything out. Even though there aren't many variables (although with how everything seems connected to the thyroid, maybe there are too many variables!), thyroid issues are so complicated - which is pretty much what the Dr I prefer to see said.
I'm just so happy to have found this forum and found that I can do private testing. I'm also grateful to the GP I like to see for finding the issue in the first place, as it was a blood test for abdominal pain that made him find it when my TSH was initially 5.1. But without the private test, my next blood test from the GP would have been at the end of the year!
I'm still having therapy, as I honestly find it a good place to rant about all of this stuff without bringing down those around me when going on about it 😂
I'll update once I get my antibody results back from the Dr. Though now my TSH has shot up, I think that will give them a bit of a kick that they need to get everything moving in the direction of treating me 😀
Regenallotment tattybogle
Bit of an update.
Saw my dr today and he confirmed there are antibodies there (no surprise there!). I forgot to get the levels and ranges, so will ring up tomorrow and ask reception for them.
He said due to the presence of antibodies, he’d prefer to refer me on to an endocrinologist, so I’m waiting for that now. He said they may bat it back to him? They bloody better not! TSH of 6.30 and antibodies…surely that’s enough to see an endocrinologist with a dr referral?!
He still doesn’t seem to think a TSH of 6.30 is THAT high 😂 we really can’t win, can we?
If I have no luck with the referral, I’ll pay to see one privately, but surely the dr referral will get me in?
So hopefully some positive steps forward. Not sure on the waiting time for the referral. Maybe a couple of months he said as it’s not an urgent referral? He said pretty quick.
Hmmm I think the NICE guideline is two tests over range (Range is now around 4.8-5 ish depending on the lab your GP might be out of date and be think top of range is 10, that was some time ago) guidelines say start patient on Levo and titrate upwards from there at 8-12 week intervals, my GP wanted to wait 12 weeks each time but I pushed for increases every 8 and had no resistance. Your GP sounds very cautious.
I too had a bit of trouble getting started and in the end asked GP via phone appointment if I could trial Levo (knowing that in reality there is no going back). That was approved and I went from there not speaking to the same GP twice for over 12 months, I just kept quoting NICE guidelines (tatty sent you the link earlier in our chats). Kept reporting my hypo symptoms and also to trial next dose up. Don’t wait around losing weeks to this debilitating condition, maybe if you feel like it ring again and ask for a trial. Remember in some European countries you can buy Levo over the counter like hayfever meds or paracetamol, we’re just a bit uppity about it in the UK.
hope that helps, 🌱
Thank you.
I rang the Drs today, as I forgot to get my results for the antibody test from the Dr.
The receptionist said that only TSH and T4 had still come back, yet the antibodies were definitely on the requested form. Why would this have not been checked?
The Dr said because of the presence of them, he is referring me to the endo (which I have confirmed that a referral has happened with the receptionist this morning). Could the request for antibodies have been rejected because he possibly noted that I had a private blood test done that showed them, and whoever oversees this has decided that's good enough for them not to "waste money" on another?
Do you have any idea how long it could take to see an endo on the NHS? The receptionist explained it as i'm "on their books" and they will get in touch with me. Will it be months? If that's the case, I shall just pay to see one. I'm not happy about having to do that, but needs must.
I will definitely keep chasing them. I had a day out with my wife and 8 month old daughter yesterday that was lovely, apart from the constant abdominal discomfort and also neck, hip, and back pain 😕 
I'm also sticking with the low dose of Sertraline (50mg, down from 150) and still feel the same. So maybe I'm not just mental and there is something else causing my mental health problems?!
The guidelines on the threshold for treating this illness really need reviewing.
Hey Griffo,
So glad you could enjoy a day out despite the pains, and that the lower Sertraline feels the same, that is a win, I hope that continues for you.
Endos - I've never seen one, from observing others here its a bit hit and miss, you sometimes get a good one that knows about thyroid, you sometimes get one that is a diabetes specialist and not really up to date or knowledgeable, or the worst kind, out of date and very arrogant or dismissive.
You could google the endocrinology department at your local hospital and try and find a secretary's or administrators number and ask what the typical waiting time is.
Personally I wouldn't pay as its £££s but in your situation you have a more complex and pressing need. You can contact Thyroid UK here to ask for the most up to date list thyroiduk.org/help-and-supp...
Once you have decided on an Endo to check out, its recommended to put a fresh post on here asking people for a direct message back to you if they have any experience of the named professional. People can't reply in the messages (has to be direct message) to protect the good ones from having their names bandied about.
Another thing you can do is read other posts about people who have just seen an Endo privately and had a good experience and then ask them where and who they saw (by direct message obvs).
Antibodies - no idea, but you could be right, they've seen you have them and thats perhaps enough.
Hope that helps, keep on keeping on, it sounds like you are on a good path.
Gut health stuff - how are you on probiotics, gluten, dairy, soy? For me it's taken months to find out that onions and garlic make me a bit loose, dairy is by far the biggest impact for me, gluten is more balance/back pain and headaches, soy - advised as it does something with autoimmune and levothyroxine but I'm too lazy to learn what it is, I just stopped.
🌱
what brand of Levo are you on?
Just wondering if its a filler in yours thats causing abdominal pain....
Will read your larger reply above, but wanted to respond to this before going out. I'm not currently on any medication. That's what I'm trying to get
Hi Griffo_
There shouldn't be any problem with NHS lab agreeing to run the TPOab test .
In conversation the other day GP said antibodies were there, so he must have seen a result to say that (they don't take private results into account , not in any formal/ diagnostic sense anyway , they always have to get their own NHS lab 'proof')
even if GP wrote they had seen a private result on lab request, NHS lab wouldn't see that as any reason not to run it themselves . NHS guidelines allow TPOab testing once if TSH is over range , and your last TSH clearly was.
i think it likely the receptionist just doesn't know where to find the result .
Go back to reception .... be polite , but be persistent.
You're not just mental .... you have clear evidence of autoimmune hypothyroidism ,
(you could of course be nut's AND have autoimmune hypothyroidism , but being nuts does NOT cause raised TPOab , and it doesn't cause TSH to go up to 6 ... autoimmune hypo does that .. and GP's ARE allowed to treat subclinical autoimmune hypo (without needing to ask an endo) IF it is symptomatic, and especially if TPOab are raised )....... and anyway ~ going nuts IS a symptom of hypothyroidism.
So you want to know :
~ the lab ranges for the TSH 6.2 [ ? -?] fT4 12 [? - ?]
~ and the range for the previous 2 NHS TSH tests 5.1 /4.67[ ? - ? ] you need to know if these were over range or not.... if they were, then guidelines say GP could treat you now .
~ and you want to know the TPOab result that the doctor has told you he has seen ( and the range !)
~Smile nicely , but don't leave the desk without this information .. it is your legal right in UK to have it (as long as a GP has already seen the results first) .
a referral is likely to take many months ... it is unreasonable to make you wait months without giving you all the relevant information .... when you could be treated by GP already IF you ALREADY have 2 NHS over range TSH results (and NHS evidence of raised TPOab) , then the GP COULD start you on levothyroxine now according to NHS guidelines (and if this GP won't , you could legitimately get a 2nd opinion from another GP at the practice)
Thank you for your response!
I’ll get in touch to find out the wait time.
I’ll also get in touch with the practice manager to get my files put on the NHS app.
If the hospital say it’ll take months for a referral, I’ll get in touch with the dr and ask for a trial of meds.
If they don’t do it, or say I need to wait, then I guess I’ll quote the guidelines?
I keep not wanting to offend my Dr, but why should I be worried about that? He’s clearly not treating me when the guidelines say he should!
Hey Griffo, the bit about your GP saying the Endo "might kick it back to him"... this is highly likely as you sound like a pretty straight forward case that needs to be started on Levothyroxine first off, which is what your GP should be doing and the Endo will tell him that... but it might take months for him to do that, Endo's only get involved in trickier cases and if Levo isn't working, so they can refuse your case.
You should be able to get started on Levo by seeing a private GP rather than the expense of an Endo?
In Gloucestershire the wait for an Endo was over a year a couple of years back...
That makes sense. If I see a private GP will I be able to get the medication via prescription on the NHS do you know?
Not if you get a private script, you'd need your NHS GP to step up and take on the prescribing... might shame him into speeding up rather than stalling which seems to be the tack and in the meantime you get started on what you need.
Is there a chance of a second opinion within your surgery? It's worth being a bit of a nuisance 😏
The one you have been seeing seems out of his depth?
Even with NHS prescribing you have to pay to start with and then get your exemption through later
I could probably get a second opinion via my surgery, but I think they’ll probably just go with whatever the dr I’ve seen has said. He’s one of the main salaried GPs there.
Yesterday I was looking at private GPs locally and found a GP I saw when I was around 16. Unfortunately the surgery closed so I didn’t get to see her after. I credit her with saving my life by being able to get me the help I needed mentally at the time. Turns out she now also specialises in hormone related issues!
I don’t believe in this sort of stuff, but almost seems that this is fate that I found her! I think I’ll book an appointment with her for next week!
I also didn’t realise that it can take a while to get the exemption. May as well just go for it hadn’t I!
She sounds perfect! Great to have a connection.... Let us know how you get on 🤗
Will let you guys know. Seeing her Wednesday evening. I guess the objective is to come away with a Levothyroxine prescription? I’ve never seen a private GP, so not sure how that will work with treatment going forward. I assume it’ll go on my record and then my NHS GP will take over? You guys are right, though, now I think about it. Why would an endo see me? They’ll just tell the Dr to treat me. It’s a simple case.
Excellent I will wait with interest. Go you! 👏
This sounds good, great that you found her, that will make a difference. But get the NHS doc onboard too. I’ve found it’s quite good to see a locum, they tend to be more independent minded. Especially the ones from abroad who are doing a few months cover. I’ve seen Eastern European, Indian, Afghan recently and been very impressed. 🤗
Yes, good point, locum's are often free thinkers and less oppressed by the surgery hierarchy 😏
I'd recommend you arm yourself up with a copy of the NICE guidelines where it states that 2 TSH results above 5 mean that you can be diagnosed and begin treatment. Is there a more open minded GP at your practice that you could see? Some GPs are sticklers for TSH over 10 so find one thats more flexible and point out the NICE guidelines.
nice.org.uk/guidance/ng145/...
1.5.3 Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
Regenallotment TiggerMe tattybogle
You'll all like this. I just received the following TEXT from my GP surgery:
"The GP has sought advice from Endocrinology, and they have advised they do not need to see you in clinic. they have just advised to repeat your bloods in 2-3 months time. Please contact the surgery when due.
Thanks, "
Pathetic - I'm absolutely fuming. Thankfully I have booked the appointment with the private GP.
EDIT: It's taking all my energy to not ring the surgery and give them what for.
EDIT again: I'm so angry. I don't know why I expected anything different.
lol ..... if GP didn't know what he's supposed to do about TSH 6 , and +ve TPOab now , what makes endo think he'll know what to do about it in 3 mths time ....
To be fair to endo , if this is first over range TSH that NHS have on record , then "repeat in 3 mths" is the proper response . (to rule out a 'one off') ... your previous may be borderline/ slightly over range , we don't know for sure without seeing ranges.
Nice you' ve found private GP you know already ... but you do need to be aware ... private diagnosis / treatment does not have to be accepted/ continued by NHS GP's . It often is , but they don't have to.
and unfortunately , it can work against you in future .
eg. if you start levo privately with out the evidence of sub clinical hypothyroidism that NHS need (2 over range TSh 's , 3 mths apart) ... there will always be a '?' over your need for levo as far as NHS are concerned .
once you start taking levo , your TSH lowers and you loose the opportunity to give NHS the further 'proof' they need. So if you start private, you may have to continue private (with all the ongoing costs that involves)
even if NHS do agree to take over prescribing levo, the '?' will always remain (unless you come of levo for a few months at some point to allow TSH to rise high enough again to prove it ).
This '?' isn't necessarily an issue if the dose of levo you need to feel well gives 'in range' TSH results.... but a lot of us need a dose that sends TSH a little under range and have to fight to be prescribed that dose , because GP wants us on a lower dose ... this fight is harder if they still question the original diagnosis.
So personally .... i d wait till November and let NHS retest ... might save you a lot of bother and expense in the long run.... you are going to need thyroid hormone replacement prescriptions for life, and realistically , you will run into some problems (dose/ tablet brand etc) along the way~ .... you really don't need an argument about 'whether you need it at all' every time you have any sort of problem.
a wait of 3 mths may turn out to be worth it in the long run ~ assuming TSH goes higher in the meantime ~ if it doesn't, then go see the private one at that point .
It's not the first over-range test I've had done on the NHS. My First one was 5.1 months ago.
This is the around the 2nd or 3rd "let's see in a few months" that I've had.
I've just been to my GP surgery to request that all of my records be put on the app. Then I can hopefully see the reference ranges.
Should I just ring the surgery and tell them to pass on the message to my GP that I'd like to trial medication?
EDIT: One thing my Dr mentioned was about it going the other way with meds. I'm beginning to think he thinks anything below a 4 TSH is hyper!
They don't think twice about prescribing SSRIs though, do they?
once you are certain the previous 5.1 was over range ( even if it sneaked back into range in between ) i would try leaning on GP with letter eg :
" i have confirmed autoimmune thyroid disease (+ve TPOab ), therefore it's more likely i'll end up on levo at some point anyway. I have symptoms already effecting ability to work , etc. I now have 2 over range TSH tests. NICE guidelines say you 'can consider' treating me at this point, so i am requesting a trial of levothyroxine (starting dose 50mcg as per guidelines, with titration after blood test) , rather than leaving me to deteriorate further . You mentioned concern about 'going the other way' if levothyroxine is started , but overmedication is not a risk if dose is monitored effectively , and if it did happen the the dose can easily be reduced , so i do not see that is a reason to refuse a trial"
Yep what she said, I’d do that 👆
Right guys - just replying here as healthunlocked is a bit all over the place with responding to things, isn't it!
tattybogle Regenallotment Jaydee1507 TiggerMe (sorry if i missed anyone!)
So should I try and get the private GP tomorrow to get me started on medication or not?
Ideally I'd like my NHS GP to treat me. I think I'd like to get treatment started tomorrow, and then somehow get my NHS GP to take over.
I guess I could then use the fact that another GP that has a specialism in hormones has also recommended I start treatment to get my NHS GP to treat me?
I shouldn't have to be doing all this, as the guidelines themselves say this is what they should be doing! It will be nice to be able get insight into how all this works from the private GP tomorrow, as she is also an NHS GP elsewhere.
I'm aware my posts are coming across all over the place - they're just ramblings from a scrambled mind. This is all very overwhelming - it shouldn't be this hard, should it?
EDIT:
Just got access to my patient records:
Date Serum TSH Level Normal Range Result
9 Aug 2023 6.30 mU/L 0.1 - 5.0 mU/L Abnormal
6 Jun 2023 4.67 mU/L 0.1 - 5.0 mU/L Normal
19 Apr 2023 5.17 mU/L 0.1 - 5.0 mU/L Abnormal
Date Serum Free T4 Level Normal Range Result
9 Aug 2023 12 pmol/L 12 - 23 pmol/L Abnormal
19 Apr 2023 13 pmol/L 12 - 23 pmol/L Normal
Date Se Thyroid Peroxidase Ab Conc Normal Range Result
9 Aug 2023 N/A N/A Abnormal
It's really up to you but as others have pointed out, there could always be a question mark over your diagnosis if your GP/s aren't on board with it and they may make you stop Levo as a trial to see if you relaly need it.
Have you fully exhausted trying all the GP's at your practice and shown them where in the NICE guidelines it says you can be diagnosed with 2 consecutive NHS tests over range?
You haven't stated your antibody results but if they were positive that is further evidence.
Note: from private bloods @ top of post :
Thyroglobulin Antibodies - 388 [0 - 115]
Thyroid Peroxidase Antibodies - 117 [0 - 34]
NHS test hasn't reported number for some reason , but does say TPOab 'abnormal' , so def over range .
You could see this private one and ask for advice and how to handle NHS as she is both maybe?
The priority is getting well isn’t it, so tomorrow’s appointment is your shortest route. Given your mental health waiting could seem intolerable, i totally get that.
How about see her get advice and maybe start if she agrees, at the same time, this afternoon (by email or letter) point out to NHS GP that you already have 2 NHS TSH over range and low in range T4 and antibodies suggesting auto immune hypothyroidism. As you said earlier, say that you would like a trial. These two things can happen in parallel 😊 either way you will get started.
Please please know that for some of us Levo makes us feel worse before we feel better. You can feel good for 2-3 weeks, then awful, then better again, it takes 8-12 weeks to truly settle on each dose. Slowly slowly does it or you will get in a pickle. Any odd symptoms post a new post here and folks will help. 🙏🌱
Yes... what Regen says... the NHS have this thing about 2 consecutive above range TSH results which, when you are borderline can be tricky to get if they won't allow blood tests before 9am 😬 and for many you start to feel really crappy once above 3....
My Sister was is in the same position... having ridden this ride we have started her on Levo otherwise she might spend years going down hill further before the NHS will act... yet to tackle her GP again.... more concerned about stabilising her first.... your thyroid is under attack but it can be a slow decline with flares of activity...
i agree with regen ...talk to private one ,and write to NHS GP t same time
(so the letter has to go on your record saying that you have requested a trial due to 2 over range TSH / low fT4 / +ve TPOab .... and that you would prefer to 'trial' lvothyroxine for the condidion your blood results confirm you do have , rather than 'trial' antidepressants on the basis of 'no evidence whatsoever' ) ....and see who gets you across the finish line first.
p.s include details / dates of those over range TSH results in letter... it has been known for 'inconvenient' evidence to curiously disappear off the patient access system after patients have started making a fuss.
hope your appt with private one goes well Griffo.
tattybogle Regenallotment Jaydee1507 TiggerMe
To cut a long story short - I have my trial of Levothyroxine sorted.
Now, the longer version and maybe even some advice that others can take from this situation and apply to their own for getting treatment.
She's surprised that my doctor hasn't started treatment and said that if someone came to her with my numbers (especially with the symptoms), she would've started them on 50mcg Levothyroxine. She also said that she's not surprised by the endocrinologist's response, as she said they have such tight margins that they have to work with on the NHS with regard to test numbers. Also, as you guys said, it's a pretty easy case to look at and doesn't need specialist intervention.
She also said that even without the TSH numbers, there's an argument to start treatment due to the positive antibodies, as she said that has been known to help calm that side of things down.
Due to the potential weight gain that can come with an under-active thyroid, she also said the treatment would be advised due to me having anorexia in the past when I saw her around 16 years ago, as huge weight gain could potentially bring that back out into the forefront of my mind - something I never actually thought about! She's very keen on treating it as it could be what is causing a lot of my mental health problems. In my eyes, this is what a proper Dr does! She also knows it runs in my family, as my father's mother had an under-active thyroid and goitre, which she couldn't have removed due to heart problems. My father's two sisters also have hormone problems, but I'm not sure about the details of that.
She's given me a prescription and has said to try it for a few months, as she thinks I'll start to notice the difference in a few weeks. Once that has been done and I can say it's had a positive impact, she'll write to my Dr and recommend continuing it.
She doesn't think my Dr will be happy (probably as it will show them up). Still, I said at the end of the day, I don't give a damn what he thinks, as he doesn't have to live with not being able to hold his 8-month-old daughter for more than 10 minutes due to joint pain and muscle fatigue, or have to think back 5+ years to the last time they felt healthy, or live with forgetting things that he just spoke to his wife about 5 minutes ago, etc. I feel as though I'm 73, not 33!
She also mentioned some symptoms I have that she said are classic hypo symptoms, which I hadn't read about being classic symptoms online! Floaters in your vision, and accidentally biting your tongue! She also said choking regularly on fluids, but this is something I don't get.
I know this post is a bit all over the place, but I'm so happy to have found this place and all of the advice you guys have given me - I'll be sticking around 
She sounds like a keeper ...as you say , just like what you'd expect 'a doctor' to do .
yes ~ seeing eye floaters and accidentally biting tongue ~ previously well known symptoms of hypothyroidism that most GP's don't know about because (following the advent of the TSH test) the detailed chapters on symptoms have gradually been removed from the thyroid books used to train them.
Indeed she is!
That’s interesting! I’ve never heard of a test that can be so controversial like the TSH test (controversial probably isn’t the word, but relied upon so much when it doesn’t give anything near the full picture) be something that drs rely on so much!
They think it's infallible because the test itself is very accurate ..and it can indeed measure your TSH down to 3 decimal points. Great .
but an accurate measure is no use unless the person reading it understands the properties of what they are measuring .
"i've measured your suspension bridge using my super duper measuring stick , it's exactly 12.348 Mtrs long (but i have no understanding whatsoever of the effects of heat on a metal bridge)"
yay! I’m doing a dance for you! 🕺🏼🕺🏼🕺🏼
Next job is to find out your vitamin levels for B12, D, Ferritin and Folate.
Getting these up will make you absorb your thyroid hormone replacement better.
Make a fresh post about starting 50mcg Levo and you’ll get lots of advice.
🌱
Thank you! Yes, I testes them via medichecks on the 18th of July - do you think I need a more up-to-date test for vits?
It’s so annoying seeing the nhs blood results now I have access to my record. My T4 on all of them has been rock-bottom in the range, but because it’s still technically in range, it’s “fine”.
My T4 on the medichecks one wasn’t so bad, but my latest nhs one since then it has absolutely tanked!
I will start a new thread now re: the Levothyroxine
Nope don’t test again yet those previous results are still useful. I would make a new post saying you are starting on 50mcg and what those vits results are, A new post will get replies from the admins with specific advice for you. 🌱
Help interpreting abnormal thyroid results please!
Thyroid results, advise please
Private test results help please
Help with results please
Help please to make sense of my Medichecks results
