Went to Drs yesterday to request a referal to an endo, as I feel unwell, weak and wobbley - for well over a year now. I told him that I had paid for a private blood test to check my t3 levels, as the Nhs doesn't like doing them that often, and he totally refused to look at them. Said that, if theyre done privately then the persons doing them should have provided that in the service, or else theyre just taking your money!! I had them done through Blue Horizon, and they show that my t3 is too low. I asked him to refer me to an Endo and hes not doing that either. He went on about the tsh and t4 levels, and that if they are low then they would look at the t3 levels, otherwise, if the tsh and t4 levels are ok then it had nothing to do with the t3. I told him that it may be alright with the people on the 'other end' of the test, but from My end, it was lousy, as I'm the one feeling ill. He said my unsteadiness could also be neurological, and he could refer me for an Mri scan, on my head and neck. He also mentioned it could be a ruematological issue, so has booked me in for a blood test re that. I am at a loss as to what to do now. I am annoyed with myself too for not saying what I needed to, even though I'd written prompts down!!! Sorry. Rant over.
At a loss and feeling ill: Went to Drs yesterday... - Thyroid UK
At a loss and feeling ill
welcome to the forum
Please add actual results
Did you also test vitamin levels
Is your hypothyroidism autoimmune
How much levothyroxine are you taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
do you always get same brand levothyroxine at each prescription
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
What vitamin supplements are you taking
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Wow!!! Thats a lot of information to take in, but I thank you for it. I been hypothyroid, not been called one hypo nor the other, for 20+ years, now 67. When I queried Hashimotos once, was scoffingly told, " your not Hashi". I posted my results on the thyroid uk fb page, and was kindly told that my t3 was too low, thats what helped spur me on to see a GP again. I bought Paul Robinsons book today, as recommended on here, as I want to try dosing with t3. I'll try posting my results on here for you. I'm currently on 100mgs Levo. I take an iron supplement, with b12 and folic acid. Plus a vitamin D3 tablet. I have a yearly blood test for tsh and t4 levels. On accord Levo, as I can't take Teva...gave me migraines and sensitivity reactions.
Sample Dated : 19/09/2023 9:55 AM
Sample Received : 20/09/2023 4:07 PM
Result Reported : 22/09/2023 8:17 AM
Sample Type: F- Serum,
Test Patient Result Normal Range Units Comment
Biochemistry
Magnesium 0.88 0.66 - 0.99 mmol/L
Hormones
Cortisol (Random) 237.0 6am - 10am 166 - 507 nmol/L New range
4pm - 8pm 73.8 - 291
Thyroid Function
TSH 1.91 0.27 - 4.20 mU/L New range & unit
T4 Total 109.0 66 - 181 nmol/L
Free T4 19.2 12.0 - 22.0 pmol/L
Free T3 3.69 3.1 - 6.8 pmol/L New range
Immunology
Anti-Thyroidperoxidase abs <9.0 <34 IU/mL New units
Anti-Thyroglobulin Abs 32 <115 IU/mL New units
TSH 1.91 0.27 - 4.20 mU/L New range & unit
Free T4 (fT4) 19.2 pmol/L (12 - 22) 72.0%
Free T3 (fT3) 3.69 pmol/L (3.1 - 6.8) 15.9%
Was test done early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test
I take an iron supplement, with b12 and folic acid. Plus a vitamin D3 tablet.
Please add most recent results
Never take iron without getting full iron panel test and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Stop iron supplements 5-7 days before test
Medichecks iron panel test
medichecks.com/products/iro...
I took blood at 9.55 a.m, before taking my Levo dose. I used to take my Levo around 8 a.m, with water, but have recently change to bedtime, to see if that makes a difference, as someone had said that they feel better for taking it then. I only changed about 5 days ago.
So on the test last dose levothyroxine was 25-26 hours beforehand
So this confirms you have poor conversion
Ft4 is high…..but Ft3 is low
First step
Check vitamin levels are at GOOD Levels
2nd thing to do….look through all old blood test results, see if you ever had high thyroid antibodies
Both are within range now, but if were ever high in past, this would confirm cause is autoimmune
Do you have any other autoimmune diseases
Psoriasis, vitiligo, PA, lichen planus etc etc
Very common for conversion to get worse the longer we are on levothyroxine, especially post menopause
You could request GP test vitamin levels
Or by pass him and use
Monitor My Health (NHS private test service) 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
Welcome, you'll receive lots of support here. You obviously have a fairly ignorant GP there! I use Blue Horizon and both the GPs and the private consultant (who is also nhs) have been perfectly happy to accept the test results. Please post all your results and meds as SlowDragon suggests.
Thank you. I could see from the other posts that this site is a very supportive place to be, only wish I'd found you all sooner. But Im here now. I agree with you re GP. I had a supportive dr in Kent, but since moving to another county Ive not been so lucky. Cant travel, no strength, so had to give up driving, for now.
Your GP, just like mine, is a misogynist posturing buffoon. I wish I could come to your next appointment with you. You might want to look at Monitor My Health tests - carried out at the Royal Devon and Exeter NHS Foundation Trust laboratory. So your tw@t doctor can't gainsay the results. What an @rse. We are so, so fed up, upset and angry with these t*ssers. Fight!
You made me laugh. Thank you. x
Hello PurpleOliver and welcome to the forum ;
Of course you are annoyed - but it's not with yourself but with the blinkered doctor and the stupidity of the system - which routinely does not run the necessary thyroid blood test and doctors working to guidelines that are not fit for purpose.
Please share your blood test results and ranges with forum members who can talk you through what they all mean and your next best steps back to better health.
There are over 136 thousand forum members on this patient to patient forum who have all been angry with themselves - but got their own back - found help on here - and now with a little knowledge are more able to self advocate and have taken back some control for themselves.
When I joined some 8 years ago we had just under 15 thousand members - there is a massive problem out there and why this forum exists.
Thank you. I'm can see the support you all give one another, and am hopeful of feeling better. What is, and always has been, the sad and annoying length of time it takes to get the right help, on the road to feeling anywhere near well again.
I know, we all know - and so it goes on but it is empowering and so worthwhile getting a handle on things - thyroid ill health can effect all aspects of one's life right through to mental, emotional, and psychological issues, let alone having the energy to just get through the day -
There is nothing on your Profile page - but between us all - I'm sure we can support you to get back on a better track and improve your overall thyroid health.
Hi PurpleOliver and welcome!
I do love seeing new forum members like yourself come on, as we have all been where you are - medically gaslighted into thinking we are depressed or hypochondriacs, with under-educated and mis-informed and sometimes bad-intentioned arrogant doctors…
Leaving us feeling so unwell, and so in the dark and confused.
Well - that is all about the change! We can’t speed up the process of optimizing thyroid hormones - you are still in for a long journey where you will find more patience in yourself than you thought possible.
But what we can promise you is that you will no longer be confused, you will learn about your body, understand your blood tests, and get on the right track to feeling as well as you can.
And yes - as if we don’t have enough of a challenge physically, there will be the parallel challenge of navigating and wrestling with the NHS.
But it will be easier with the support of this brilliant forum.
Welcome!!!!
I dont try to talk to doctors its a waste of time and upsetting. I get better results by writing letters.
Your GP is so very wrong. Your GP sounds like mine was. I had very low T3 also but T4 was high. TSH was only just in range at top end. I ended up unable to walk properly. It was a gradual decline. I was sent down the neurologist route. It wasn’t that. I was send down the cardio route. It wasn’t that. I was as admitted to hospital on 3 separate occasions. Everything in my body was running very low and slow. Heart rate resting very low 37 bpm. Blood pressure too low. Cortisol too low. I found this forum eventually. Then things started to improve as I was advised to see a private only endocrinologist. I had that consultation and was diagnosed straight away as a very poor converter of T4 to the important T3 hormone. Without enough T3 you will struggle on many levels. I was prescribed T3 liothyronine medication and I could not believe the difference it made to me. Within days I could walk normally. Then as weeks and months passed I got better and better and fitter. I lost over 4st that I’d piled on while being under medicated and remained a better healthier weight. My cholesterol dropped from 6.8 to 4.9 within 6 weeks too. I’d suggest do not waste anymore time with the NHS and your GP. I would request a GP referral letter to see a private only endocrinologist. I say private only as if you see a NHS/ private endocrinologist they’ll still probably follow NHS guidelines on T3 and they are very reluctant to prescribe T3 but only on the grounds of the cost to the NHS. Outside the NHS t3 liothyronine medication is cheap. All I paid to get well was £600 and that included 2 consultations some bloods and an annual supply of the T3 medication. Best money I have ever spent. Now the NHS has buckled and prescribe the T3 which they should have done in the first place
If you’d like my private only pro T3 endocrinologists details please private message me as we cannot mention Drs names on the open forum.
Your GP will not refuse a referral letter. Their job is to make you well and this should not be obstructed.
You described my symptom exactly. Thats how I have been, unable to walk unaided or supported by someone/something. Been wobbley and experiencing weakness in my legs and body for nearly 2 years now. In that time Ive done the cardiologist route and the hearing assessment route - was given an execise to do to help with balance, follow up in 4 months to check on progress with that. If no joy then I'll be sent for a head and neck scan. I saw a positiveNhs/private Endocrinologist in Kent, but moved to another county and lost contact, my fault. Does your Endo do remote consultations, as I cannot travel far? I'll try the referral letter to my Gp too.
I’ll send you a pm now. X
Thank you. x I was just looking at how to pm you on here and you beat me to it.
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