So recently had an unproductive endo appointment, he’s adamant my symptoms are not thyroid related.
I’ve had raised thyroglobulin antibodies but not Tpo.
He did bloods taken at 4pm
TSH 0.84. 0.30-6.00
FT4. 14.4. 10.4-24.5
FT3. 4.9. 3.0-7.1
He did suggest I had a goitre and nodules ( waiting for a scan).
I think the only way to reclaiming my life is to self medicate. Please can you private message a source and how to get started. Thankyou x
You really need to do your blood test first thing in the morning and don't eat anything before just drink water.
Hi....Yes I know, it was done at the hospital I had no choice on the time unfortunately. When I do private ones I do them first thing.
It just shows you the ignorance and lack of basic thyroid knowledge they have!
i like to think that i would refuse a surprise, or badly timed blood test, but i must admit to 'realising'many things after an appointment. so i spose i wouldn't think that straight if they wanted my blood.
i'm thinking of adopting a 'personal policy' in my head. In the same way that I (and most of us) have a personal policy of deciding to not drive home BEFORE having too much alcohol to make a sensible decision.
My new 'personal policy' could be 'if its not prebooked, preplanned, early morning blood draw, they aint having it'.
Now all i gotta do is remember that...
Not always easy. I had some blood tests a while ago and these days the request is sent electronically. All I had was my hospital number so couldnt see what tests were being done only what I was told. I asked GP does this include thyroid blood tests -she said no. She lied it did.....unfortunately I took my thyroid meds that morning (ndt)so the results looked like I was well and truly over treated. I did challenge her & she said they would ignore the results......but its a waste of money & the thyroid results remain on my record. Annoying & incompetant!
Not that easy to do when the endo clinic only operates in the afternoon. I’ve been attending for six months now and have no choice.
So you need to go somewhere else, somehow
To be fair they have been very supportive in the main. I was referred to the clinic by my gp and for the most part they’ve listened to me. (I’ve been four times and seen three different endos but two of them are great). The main endo has thyroid issues himself and has been very understanding. I’ve been through a very rough 6 months and I’ve been able to phone him when I’ve had issues. I think on the whole I’ve been very lucky.
A good tip....if a surprise test is sprung on you
Say you are taking high dose biotin (even if you aren’t)
So would have to stop this supplement for a week before any blood tests
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
I like that! Thanks.
Personally I haven’t had NHS test in over 6 years. Got fed up with lab refusing to test Ft3 (even though I was on NHS prescribed T3 )
Refusal to test vitamin D levels more than once every 2 years, even after deficiency
I am assuming that you have had hypo symptoms for a long time by your replys and goiter. I used to advise people to start on levo and give that a good trial then move to an NDT or T3 if it does not help but I have come to the conclusion having been on here a while and in my own experience that untreated hypothyroidism leads to conversion issues in the cells and that it becomes hard to get T4 to become T3 as it should. I think cells are very unselfish and maybe this is protective but I think a lack of thyroid hormones long terms leads to cells rejecting the T4 so that it can be prioritised in the body else where. That may be why we survive so many years, maybe the heart and brain are getting the lions share of the crumbs. I would advise t3 starting on a very low dose and increasing slowly over a few months until you are feeling much better. Prior to starting the T3, you can as I have been mocked for suggesting think about the things that endanger your safety and write a list of actions you are going to take to keep yourself protected from threat. Do this most mornings ( probably not a good idea of you are a very anxious person). The adrenal gland is very sensitive to thoughts about danger (think fight or flight) and can be gently stimulated in this way to produce some adrenaline which you will need. Alternatively you can pay to have your adrenal hormones tested with saliva and if they are low start to supplement. This is best done before starting thyroid hormones. The issue with T3 is obtaining it and getting a reliable supply but people on here are usually able to point you in the right direction by private message. NDT is easier to obtain and lots of reliable sellers online. It does also contain T3 so you might do well on it as a starter. Thyrogold is a good one. I prefer bovine for ethical reasons and am not recommending pork products as a result. Keep an eye on your pulse and temperature ( daily). T3 should increase you pulse. I like to keep mine under a hundred. You do probably want it over 70. Less than that can indicate being a very fit person but if you are not a fitness fanatic your pulse is likely to be in the lower end of normality due to not getting enough thyroid hormones. Your temp should be normal so 36.5 or preferably 37 degrees C.
Just to add some context as to how wrong GP's & endos can get it wrong. I was very fit healthy lady who at age 49 developed a sudden fast growing goitre, I was in surgery within weeks and thyroid removed (so far so good) recovery was ok 14 huge blanket stitches across my neck, I expected discomfort but hospital and surgeon brilliant.
No one at this point had ever mentioned I would need medication to replace my thyroid. 6 months later I was feeling really ill, I had developed chronic pain, chronic fatigue, IBS the list was endless, i felt i was dying, I went to GP every month with more and more symptoms and i always said 'I havent felt right since the operation'
This went on for nearly 2 years, by which time i was mostly house bound, depressed, crying all the time, constant pain etc, i felt my life was over. GP just kept upping dose of opiod pain killers, sleeping tablets even tho i couldnt stay awake an hour a at a time!!!! anti depressants, statins, diazepan, lopermide, mebeverine, I was on over 20 tablets a day (which cost a fortune in prescriptions)
Xmas 2014 i told my husband i didnt think i would live another year. I was certain it was to do with my operation, started researching, got appt at Dr Peatfield for 2nd opinion and he said i was very lucky to be alive! From that day i started getting well.
It hasnt been easy, all my vits were rock bottom, my adrenals never recovered, i can not tolerate t4 and im thyroid resistant.
When i got ombudsman involved ref GP & endo (one visit after op no follow up) GP said it couldnt be thyroid problems as it had been removed!!! endo just said i prob needed HRT.
I believe this is a self help illness, drs seem clueless, you need to find what works for you, no one else can do this for you. If i knew then what i know now! I lost several years of my life in pain because my dr hadnt a clue. Dont acept everything they say is true until you have checked it out yourself. x
Oh my your experience is horrific! Talk about medical neglect.
Your life in their hands and it’s frightening.
We have to be the best advocates for our health. This disease robs you of your life and the clinical guidelines continue to push diagnosis off biochemistry.
What a relief you found Dr P!
Hope you continue to feel better x
Omg that’s awful. To diagnose means to look at the clues and form possible theories. You presented the biggest clue which was ignored. Why don’t they listen. I’m sorry you went through that.
Your story is beyond horrifying. I hope things are looking up for you now!
Yes thank you. I found a good endo 2017 out of my area, he prescribed me t3 only. I had to get individual funding from my local CCG, everything is a fight with thyroid. Most the time I am fine but i do still have set backs, usually stress related as my cortisol so low and it never recovered. I had always been so fit & active, it was a shock to me that i had never needed the NHS but when I did I had very poor treatment. I wouldnt trust a dr ever again.
So you have a goitre and nodules but symptoms are not related to thyroid (although it obviously has problems) ...? How does he work that out? Might be worth g to see someone from the TUK list even if you have to pay privately
Yes interesting theory! He’s adamant my thyroid is fine as my bloods say so!
May be worth a second opinion. I know I’ll get no where with this endo.
No thyroid antibodies tested
No vitamin D tested
No folate tested
No B12 tested
No ferritin tested
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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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 .
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. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Come back with new post once you get results
Ten years in , self medicated for last two years . Was left on 150 mcg and in zombie state . Now , unbelievable but right now on 37.5 mcg , a week that is and body temp , heart rate etc are spot on . Gp's haven't got a clue . Been difficult and taken much determination and faith to get to this point but if I hadn't done something about it I wouldn't be here now .
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