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I do hope this makes a difference. I have also been forced to buy Liothyronine from the internet as GP will no longer prescribe it for me due to the cost. I’ve been on it for 9 years. This is so wrong!
It is scandalous. Have you made an appointment to meet with your MP and inform him. Quite a few on the forum have. Most of us have signed a Petition regarding the removal of T3 for many people.
I haven't found my MP to be at all supportive in the past and I don't have the energy for that right now. I'm currently caught up in a TSH issue with GP and lab as they're saying that my TSH is suppressed.
The blood tests were invented for T4 only (levothyroxine) so they cannot be the same if we add in T3. T3, being the only active thyroid hormone, reduces the TSH but doctors don't understand that but are frightened we may get a heart attack due to being suppressed. Why then, would people who've had thyroid cancer have to have a suppressed TSH? They don't drop dead or have heart attacks.
The blood tests were invented for T4 only (levothyroxine) so they cannot be the same if we add in T3. T3, being the only active thyroid hormone, reduces the TSH but doctors don't understand that but are frightened we may get a heart attack due to being suppressed. Why then, would people who've had thyroid cancer have to have a suppressed TSH? They don't drop dead or have heart attacks.
Sorry in delay in responding.
Thanks Shaws. Even before I was taking T3 my TSH has been firmly set at 0.05, so that has become 'normal' for me. I'm not worried about it as I'm sensitive to thyroid hormones and my body knows if I've taken too much. I'm just getting frustrated by GP's and endo's (and now labs!) freaking out about it. None of them seem the slighted bit interested about how I feel!
The main issue for me right now is that my TSH results are being used as a reason to stop my T3
They will use any reason and if T3 has made us well it is cruel of them to think they know better.
They do not understand metabolism and how it works and appear not even be aware of what the Active Hormone is - is it levothyroxine - NO. Is it T3 -YES. So they should test Free T4 and Free T3 blood test to see if patient converts levo into sufficient T3.
Before blood tests were invented that's how a dose was used (NDT), by the effect on our body and how well we felt with relief of symptoms. Modern methods don't always suit some people.
It's o.k. for them to diagnose us (or not) with a blood test but many times clinical symptoms supersede the rise of the TSH sufficiently to be diagnosed but they do not diagnose us by symptoms any more.
web.archive.org/web/2010103...
Besides if we add T3 to T4, the blood tests cannot possibly be used because they were introduced for levothyroxine (T4) alone. T3 lowers TSH.
The following is from Thyroiduk.org.uk. The statements the medical profession use i.e. heart attack and osteo I doubt are true. We are more likely to get those if undiagnosed/untreated/undertreated. Why do thyroid cancer patients get sufficient levo to suppress TSH? Do they develop heart problems etc.
healthunlocked.com/thyroidu...
Levothyroxine was introduced along with the blood tests so when T3 is added results cannot correlate.
Bear in mind also that I'm not medically qualified but have undergone similar pain/symptoms /undiagnosed.
web.archive.org/web/2010103...
Did you allow a 24 hour gap between your last dose and the test?
If the surgery wants £10 (mine charges 30p per sheet) it is extortionate and many cannot afford that. So take pen/paper and ask them to quote the numbers and ranges.
Thanks for your reply shaws. Yes, I allowed more than 24 hours before the blood test. Marigold22 has recommended I get an independent blood test which I'm planning to do. I also want to see what my antibodies are as I believe I have Hashimoto's.
That's interesting that the blood tests were set up for T4 only. Perhaps that's another reason why the endo's don't want T3 prescribed?
I recently received an order of T3 from abroad which actually seems to be far more potent than the liothyronine I've been getting from Mercury Pharma. In fact, the last batch I got from MP had less than a 6 weeks' expiry date!
I'm just extremely grateful to have found an alternative source as I become very ill without it. Unless something radical happens to change the cost and the mistaken views in the UK about prescribing liothyronine, it looks like I won't have a choice other than continuing to self-fund the medication I need...
I assume they have a T3 reference range but probably interconnected to T3 converted from T4 but they then tell us it is too high if we also supplement with T3 or we have a suppressed TSH which, I believe, is how it may well be if we take T3/T4 or NDT.
I am glad you have found a good source and better quality than Mercury/
If not well on levo it is amazing how well you feel if T3 suits.
Yes, you're right about T3 making me feel much better - and I only supplement with 10mcg daily.
I would be interested to read any articles that address the issue of not being able to properly convert T4 to T3. If you can suggest anything it would be really useful if I need to explain it to my GP.
I'm new to the forum so just finding my way around it. I'm grateful for the information and support as there doesn't seem to be much in the medical profession right now...
Dynaskia You must go to the reception of your GP and ask for a copy of your latest blood test. You are legally entitled to see it, despite receptionists rolling their eyes. GPs are incapable of interpreting thyroid blood results. If you haven't had a thyroid blood test recently you need to ask your GP to do a Full Thyroid Panel, to include TSH, Free T4, Free T3, vitamins B12 and D, folate, ferritin, and thyroid antibodies. Then get a print out of the results and write a Post here asking for us to interpret them for you. Us on here who have recovered, or who have researched, know much much more than GPs and even endocrinologists (the thyroid specialists) All very sad
Thank you marigold22. The GP surgery charge £10 for paper copies so I have just asked for the results on the phone. My T4 is 16 and my TSH is 0.05. My GP requested T3 but the lab refused to do it due to the cost. The ongoing issue I'm having is that the lab and the GP are saying my TSH is suppressed. Since I've been taking thyroxine my TSH has remained pretty consistently at 0.05 and they believe this is dangerously suppressed. I don't know enough about low TSH to argue my case. In the past I've even had an endo reduce my thyroxine to try and bring the TSH up. It didn't work and I felt awful as a result. Up until this summer my GP was willing to prescribe T3, but the practice isn't happy about it, he will soon be leaving and I am having to source it myself from the internet or become very ill again. It's extremely frustrating! Any advice about low/suppressed TSH levels would be really helpful. Thank you!
Hi, the most important blood test is Free T3 as that is the active usable thyroid hormone. Nobody will be able to understand what is happening with your health without that blood test result. On the phone, they didn't tell you the ranges. Yes your TSH is suppressed but by itself it means nothing. You also must get both thyroid antibodies tested. It sounds like your GP is either being obstructive, or if fearful of them above him, or doesn't know the first thing about thyroids. You also need to post the ranges with the results (the numbers after the result figure). My GP practice only charges £1 per sheet. I think I read that from about May 2018 it will be illegal for them to charge anything.
Your alternative is to get a private full thyroid blood test which many on this forum have had to do. There are two companies which charge in the region of £99 for what is needed. These two links include everything you need to see for a forum member to interpret what's happening for you.
medichecks.com/thyroid-func...
bluehorizonmedicals.co.uk/t...
By the way, you need to have the blood taken as early in the morning as possible, having not taken your medication, having not eaten, and only drunk water.
P S I didn't feel really well until my TSH was around 0.05 which GP and endo don't like. I too have had medication reduced to get the TSH up. But they were not looking at the complete picture. Need all those tests I've mentioned above to see what's happening
I will get the tests done myself as the GP surgery won't do them. Does this include the antibodies test too? I was told many years ago that I had Hashimoto's but no GP seems to have believed me when I've mentioned this to them...
The purpose of taking thyroid hormones is to relieve our clinical symptoms. Neither Endo or Doctor know much and rely on misinformation.
Thanks for your reply. From previous blood tests at the same lab the TSH range is 0.4 - 5.0 and FT4 is 9-19. So according to the lab results, my thyroid is suppressed as they don't go below 0.4 on their range.
The private tests I gave you the two links for both include two thyroid antibodies which show if you have Hashimotos or not
That's great!
Dynaskia have you signed petition? Itt campaign ? As you have been directly affected by the pricing scandal it would be great if you could ..
I think I did sign the petition but unfortunately I missed the deadline for the survey.
Yes, I have signed it, thanks.
Airmed has written a post explaining fully the current situation regarding Concordia and Liothyronine
healthunlocked.com/thyroidu...
Thanks for sharing this.
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