I started a stupidly low dose of Levothyroxine 7 weeks ago when my TSH was 8.9. My blood was drawn last week ahead of my review on Thursday where I will be asking for a medication increase. However, I’m really disheartened to see that the NHS do not test FT4 or FT3. When questioned I was told they only do it if the TSH is out of range, but as I’m on medication it’s incredibly important I see those results to know what I should be doing medication wise. I feel like giving up entirely, I’m treated so poorly at the doctors and can’t even see my FT4/3 results without paying £100 a pop for private bloods, which I can’t afford at the moment.
Is there some sort of complaints process I could follow that might get my tests taken seriously? Or is it all fruitless? 😅
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EclipseMoon
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I'd like to know also what I can say to the doctor about this. Because the doctor is just going to say that the TSH is on a feedback loop from the thyroid and changes according to how much thyroid hormone there is in the blood.
I have saved my printed out results for the last 10 years or I'd have no idea that, as my T4 goes up my T3 barely moves. I only get my T4 done now as my THS is below range and then they can tell me to reduce my dose. I wonder if it's a means of keeping us from seeing if we need liothyronine which the NHS doesn't want to prescribe? I had to pay for private blood test for T3 which I can't afford to see that the gap is widening between T3 (and T4 and now I'll have to pay more money I don't have to see a private specialist.
I feel it's beyond a joke now and some serious advocacy and petitioning on our behalf needs to take place. Which of us has the energy to fight our case? We're exhausted from the gaslighting and poorly managed medication and just the lack of the correct hormone balance in order to function well.
Its fruitless I'm afraid. Yes, they only do tsh. Yes, they'll only do t3 t4 if tsh is out of range. Sorry. And try not to stress about it because raised cortisol will make your symptoms worse... 🙄If you look through the links to labs offering thyroid panels on the thyroid uk website, you'll find some money off codes and should cost you way less than the £100 you mention if you decide to go down this route.
Your tsh is still pretty high so a dose increase is needed.... but take it slow and steady. And take a look at your diet. Its incredibly important you're not low in certain vitamins and minerals. Good luck x
Thank you for the reply. It’s what I suspected then
I’ll have to look at monitoring the T4/T3 conversion privately and then bring my GP those results.
Vitamin levels are ok but could be better so I’ve been taking some supplements where needed.
Feeling a lot better on even the lowest dose so I’m hoping to increase and monitor. Dreading my review on Thursday as my GP seems really critical of anything I’ve been recommended by other health professionals, I have a 25 page recommendation report on my treatment to bring her from my private healthcare GP 😬 I have a feeling it won’t be received well!
I had my cortisol tested, but only by private blood test, I see some people have saliva tests. It was mid range. I have no idea how that could be as I'm mega stressed on and off!!!
Even worse Greygoose my GP has been told they are not allowed to request Ft4 or Ft3!! My TSH is always suppressed cos of NDT so it's now a pointless blood test.And they did not not measure the ft4 & Ft3 last time despite this. I'm now reliant on a private blood test done by a NHS Lab. Makes me furious. Definately privitisation. And then to make matters worse my GP isn't allowed to record my results from my private test done by a NHS lab because it's not on the NHS. I did say but it's a NHS lab.... it's the same equipment, same lab, same technicians. It's bonkers!!
I don't think it's about blood test cost. I do think it's about preventing evidence of a need for liothyronine or NDT. After all if there is no record to show it..... And for me now I can't prove to the NHS that my thyroid hormones are in range so the TSH doesn't matter as everything is fine as per a NHS Endo advice to GP. I'm stuffed. It's complete madness. Love to know who instigated this!!!!!
Someone like Wheatman, I imagine, who hates hypos and thinks we're all a load of whinging, attention-seeking, drug seeking hypochondriacs looking for an excuse for our bad life-style. Why that man because an endo is beyond me! It's like a vet that hates animals.
🤣😜 That made me laugh! Why I avoid my local Endo dept! Horrible man. I don't normally wish Hypothyroidism on anyone but I dearly would love him to develop a tricky form of it that doesn't respond to levo and has a fluctuating pattern.... then see how he likes not being treated and told he has a mental health problem & when he finally qualifies several years later unable to eork is put on levo and told he's sorted cos his TSH is in range & left to needlessly suffer . If there's any justice in the world.....
True.... Guess it's been more than one doc after all! 😬😜 I think it's dreadful that I have to research far and wide to find a doc who might just have some knowledge about Hypothyroidism and won't flatten me for being on a NDT. NDT is a dirty word these days.... Well four!
Either total ignorance or a ploy to avoid treating people correctly and keeping them sick, which is to Big Pharma's advantage. They are making a fortune out of 'treating' our symptoms as if they were all individual illnesses, with things like statins, PPI's and anti-depressants.
But, nobody really knows what their reasons are - or even if they have one.
As far as I know people with underactive thyroid are medically exempt from prescription costs in the UK. So there's no money making from the patient themselves in that regard. I really just don't understand it. Like you say, ni one knows for sure the real reasons, at least not so much us patients.
That’s correct, my pharmacist was shocked that I’m being made to pay for my prescription currently as it’s a ‘trial’. I’ve been given a refund form to take to my GP this week as my pharmacist says I shouldn’t have to pay.
Well, I would agree with that, except that thyroid care is just as bad in other countries - here in France for example - as it is in the UK. And, how about this:
Test TSH, Ft4 and Ft3 6-8 weeks after any dose change or brand change in levothyroxine
Test vitamin D twice year
Test folate, ferritin and B12 annually
Has GP tested thyroid antibodies for autoimmune thyroid disease (hashimoto’s)
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
I feel like giving up entirely, I’m treated so poorly at the doctors and can’t even see my FT4/3 results without paying £100 a pop for private bloods, which I can’t afford at the moment.
There is a much cheaper test available privately, no doctor required :
Thank you so much, I’ve ordered it! I think I was looking at the full thyroid plus antibodies tests, which also included some other things I didn’t need, which explains the cost.
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Blood test results help
Advice - re paying for a private endocrinologist ( I’m new here) 
NHS Testing
Blood results fine - still very hypo
Testing Costs
