I just want to get something off my chest and I’m not sure which way to go;
I saw one of the Endo’s at my local hospital yesterday for my 6 monthly blood test results. Upon arrival I get told the lab didn’t do any of my thyroid blood test but my ferritin was fine and my VIT D was just above normal.
I then get told that my TSH has been suppressed for 2 years which she isn’t happy about! I can now have T3 on the NHS. Firstly I am so very thankful that the NHS has brought back T3, however, I am only allowed to have 20mcg as I was told by her “we don’t want to take the mickey out of the NHS”. She wants my TSH to be 0.01 or 0.02 and then she will be happy. I got told all the rubbish about brittle bones etc! Never mind I feel good now!
I am so upset by her comments, I feel the NHS should stop staking the mickey out of us thyroid patients, who for some, have fought long and hard to try and feel even a bit better!
My question is, do I accept the new blood form and have my bloods and then let the Endo write to my GP to get him/her to prescribe T3 or do I continue to fund my own and take my current dose of T4 at 100mcg and T3 37.5mcg.
Any thoughts would be welcome as I don’t want to start feeling like rubbish again.
Thanks
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Lindsayf
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I am only allowed to have 20mcg as I was told by her “we don’t want to take the mickey out of the NHS”.
This really annoys me. Would they say that to someone with a different condition who needs a certain level of medication or do they reserve that for us thyroid patients?
This is double standards. An example:
8 years ago my husband died from a rare form of cancer which has no symptoms until it reaches Stage 4. There was no cure, only "treatment" and no patient had lived beyond 4.5 years following diagnosis. My husband lived for 3.5 years following diagnosis, those years were filled with chemotherapy, short remission, chemotherapy, short remission, stem cell transplant, short remission, radiotherapy, chemotherapy. He was then given the "terminal" diagnosis and told he had 4 months maximum. He chose to go to our local cottage hospital and it was very obvious that he was near the end of his life. He was then taken back to the main hospital for "one last round of chemo" (which he was told cost £10,000, he was happy to do it and in my mind I wondered whether that money could be spent helping someone who actually had a chance of an extended life) and he died 2 weeks later. Much as I loved my husband and didn't want to lose him, was it really worth spending that money on his last round of chemo when they already knew his time was extremely limited? I'd already told his friend, who had promised to visit again in two weeks' time, that he would no longer be here and I was right.
So how come the NHS can spend so much on a lost cause but denies a patient the extra bit of T3 that would make an immense differece to them?
My question is, do I accept the new blood form and have my bloods and then let the Endo write to my GP to get him/her to prescribe T3 or do I continue to fund my own and take my current dose of T4 at 100mcg and T3 37.5mcg.
Does the endo know you already take 37.5mcg that you source yourself?
I would do my utmost to show the endo that I'm well on 37.5mcg T3 and to take only 20mcg will make me unwell. If it isn't prescribed, I'd take the 20mcg and top it up myself. When I next saw the endo and was told how well I was doing, I might say I was topping their 20mcg up with self-sourced T3 and doing well on the amount I was taking, not the amount that is prescribed. But that's just me, you have to decide for yourself what is the right thing for you to do.
I am so sorry to hear your story about your husband and what you must have gone through, it’s heartbreaking.
The Endo knows how much I take and where I get it from. She thinks it’s far too much T3 and wants me to reduce it to bring my TSH up. Does reducing T3 bring TSH up? Is so why can’t I reduce to say 30 and not 20, that is too much of a reduction.
I also wonder how much the NHS will have to pay for 1 months worth of 20mcg? I get 300 tablets of 25mcg from Mexico and I bet it’s much cheaper then in the UK.
I don’t know which brand they use here but the brand I use for Mexico I have no issues with. My only concern is if things go back to what happened a few years ago I don’t want to be without any T3.
I did say to her that I’m feeling great and don’t want to feel any worse but she hit me with the brittle bones and suppressed TSH line!
I would get another private test but at almost £100 I just don’t have that on the run up to Xmas. I think I’ll bet my bloods done again on the NHS and allow her to do me a prescription of T3 and then top it up myself. If I don’t get on well with combining two different T3 brands I’ll go back to my own bought ones.
Why is trying to make yourself feel humans so flipping hard! I’m not taking the mickey out of the NHS I’m just trying to live!
Thanks for all your help and this forum, somethings it’s the only place where people really understand the constant battles we face!
The Endo knows how much I take and where I get it from. She thinks it’s far too much T3 and wants me to reduce it to bring my TSH up. Does reducing T3 bring TSH up? Is so why can’t I reduce to say 30 and not 20, that is too much of a reduction.
As long as your FT3 is in range there is no problem.
My TSH was suppressed on Levo only. After I discovered I didn't convert well and added T3 to Levo (T3 self sourced, GP doesn't know), it's obviously stayed suppressed. I've been hypo/treated for 45 years and kept a record of my results for the last 25 years, during those 25 years my TSH has been suppressed for all but 3 tests. It's just the pituitary being satisfied that there is enough thyroid hormone so it doesn't need to send the signal (TSH) to the thyroid to make any.
It's unlikely that you'll get your TSH up if still taking T3. Why do doctors who prescribe T3 not know all these important things about test results when taking T3?
I also wonder how much the NHS will have to pay for 1 months worth of 20mcg? I get 300 tablets of 25mcg from Mexico and I bet it’s much cheaper then in the UK.
I did say to her that I’m feeling great and don’t want to feel any worse but she hit me with the brittle bones and suppressed TSH line!
Ask her to arrange a Dexa scan is she's going to scaremonger with the brittle bones line.
I would get another private test but at almost £100 I just don’t have that on the run up to Xmas.
If you don't need your vitamins done at the moment, you could just go for Medichecks Thyroid Monitoring (TSH, FT4, FT3), it's what I use to keep an eye on my levels and it's sometimes on offer at £29 instead of £39, otherwise there's a 10% discount code THYROIDUK.
Why is trying to make yourself feel humans so flipping hard! I’m not taking the mickey out of the NHS I’m just trying to live!
Well, the NHS is broken, and the older you get the less you get out of the NHS, certainly at my surgery. I've reached the age where I'm on the NHS scrapheap so all you get is blood tests repeated again and again (and because they're somewhere in range then symptoms are ignored, latest for me is "I don't know what it is, probably transient") and the promise of a referral which is never done.
Suggest you get FULL Thyroid and vitamin testing privately again before considering wether to agree to change dose
Can be difficult enough to just change brand of T3
What brand do you currently use?
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
If you are still taking vitamin B complex, remember to stop this a week before any tests.
You could get some folate on its own, to take in the week before (I use Solgar folate, for that week prior, when I stop my B complex)
I have a private test in May as the NHS test came back I was over on my T3 results but I was taking B complex (whoops) so I took the private one and everything was fine expect the suppressed TSH. I would pay for another one but at almost £100 I just don’t have that with Xmas round the corner.
I get my T3 from Mexico and it’s the Grossman brand.
I always take all my T3 in the morning and take all my medicine after a blood test.
Thanks for replying and supporting. I feel so fed up at times with fighting to feel normal
I have always taken my T3 in the morning with my T4 as I graze during the day and take B12 and iron tablets in the evening. So the day before my bloods I need to split it into 2 or 3 doses and take my last does about 8pm the night before if I’m having bloods done at 8am.
From Wikipedia- The British Competition and Markets Authority launched an investigation into the alleged "excessive and unfair pricing" of liothyronine tablets in 2017. It alleged that Advanz Pharma overcharged the NHS from before 2007 to July 2017. The price of a pack increased by almost 1,600% from £4.46 before it was debranded in 2007 to £258.19 by July 2017.[14]
That's correct. But the price has come down a bit now to currently £205.08 for 28 tablets although this is still extortionate and the NHS could do more to procure a much better price by sourcing elsewhere:
Beware - My NHS endo finally agreed that I could not tolerate any form of Levothyroxine ( I’ve had to source my own T3 for the last 4 years) and he wrote to my GP requesting he prescribe T3 for me. He sent the request to the CCG who wrote to me to tell me that my case is not “exceptional “ ( even though I itch from head to toe if I take Levothyroxine) and now my GP says they can’t prescribe it. So I have had to get a private prescription which I sent to a pharmacy in Germany and got 300 tablets of T3 20 mcg for less than £90 (including delivery) I will appeal but have been so unwell recently that I haven’t done so yet. But I am gradually becoming more and more angry so once I get to that point, I know I will be able to take them on!
It's a pity the Professionals at the BTA et al. haven't much knowledge about how effective T3 is for many patients. Numerous Researchers have proven that a combination of T3/T4 benefits many. People like myself cannot tolerate levothyroxine at all. Neither did NDT remove my clinical symptoms but it does for many other people.
Why should the professional organisations put down NDT which has been prescribed and saved lives, from 1892 onwards but in these 'modern and knowledgeable time' seem so ignorant but worse is that they made False Statements so that it could be withdrawn with complete disregard that some were well upon it and forced to source their own.
It’s so sad to hear that we feel grateful to be given treatment that makes us ‘normal’ 😢
I wonder if you take what’s on offer and top up with NHS source? And slowly try and work with NHS to prove that TSH is not a sound method of diagnosing health. keeping T3 in range (although that’s debatable too).
I’m so sorry you are made to feel that you have to bear in mind not to ‘take the mick’
I was given the "brittle bones" talk when I started on T3/NDT. After 12 years on it, I requested a bone scan, and you know what's coming next - my GP told me that I didn't quality for one. I told him how long that I had been on thyroid meds and he said that isn't a reason according to the official guidelines for requiring a scan. So who is lying here?
Calcium, Strontium and Boron. These are supplements you can buy on line and will strengthen your bones. My endocrinologist prescribed these along with vitamin D3 5000 mg each day. It’s time we take charge of our healthcare
Be careful with the calcium. I took it for years and landed up with Bursitis in my right shoulder that I eventually got rid off after I stopped taking the calcium supplements. It's a bloody minefield being chronically ill. LOL
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tsh undetectable 
planning to retry T3. Please could I have guidance on which private b/t to buy before I start? 
I got T3 on the NHS! But now what???
I am on 10 t3 only now....
