Just having a moan really, so apologies in advance....
I seem to be getting nowhere trying to get any help to address my ongoing issues with my fatigue. It's getting worse and I think the stress and frustration being caused by the lack of any real advice/action from my endo isn't helping. I'm constantly tired, straining to keep my eyes open and focusing at work it really hard. I'm also experiencing some slight dizziness which could be related to getting so wound up about this or possibly just because I'm tired.
Brief back story...
1. Been seeing an endo since April, he thinks I am overmedicated so his only advice is for me to reduce my dose from 125mcg daily to 100/125mcg daily. I disagree and have told him this.
2. Requested a second opinion via my GP. Was told by a 2nd NHS endo that he had nothing to add and wouldn't see me as a referral (not entirely surprised that he wouldn't disagree with a colleague).
3. Paid for a private consultation with a 3rd endo who was a breath of fresh air as he confirmed everything that I have been saying for months...i.e. my T3 & T4 should be at least 50% through the range and not to be concerned about TSH as long as it was detectable. The downside was that he mentioned trialing T3 as some patients benefit from it but said he couldn't prescribe it.
4. Private report sent to NHS endo who has disregarded it (no surprise here) and advised that I reduce my Levothyroxine and hopes that my ferritin levels continue to improve. Will re-test in 6-8 weeks - told him what's the point in retesting if we're not changing anything. My levels have been consistent for the last 10 months.
So, back to square one and I feel like I'm banging my head against a brick wall now. I am sick of going around in circles. Scheduled another call with my GP to push for another referral but I don't hold out much hope.
Most recent tests - 25/07/22
TSH: 0.05 (0.3-4.5)
T4: 20.5 (10-22) - 87.5%
T3: 3.6 (3.1-6.8) - 13.51%
Ferritin: 32 (12-250)
B12 serum: 310 (150-1000)
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Harley4
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have you done the DIO2 test to see if it offers an explanation for your low conversion or at least provides a justification for an Endo to give you a T3 trial?
I like the sound of your private Endo saying your T3 should be at least 50% through range, sounds like gold.
Edit: why can't he prescribe T3 if he thinks you might benefit from it?
Just a little add on to pearls suggestion so you are prepared. Not all endos accept the DIO2 test either because they don't know about or because they believe that the effect on conversion is not significant enough.
If an Endo is not concerned by Hayley's low conversion rate then I suppose there is no reason why he would be interested in the reasons for the low conversion, whether it is DIO2, low iron or some other reason.
I didn’t get to the bottom of why he couldn’t prescribe it. Not sure if he was referring to it being via NHS route or at all. I might have to follow up with him again.
Yes, all tests are done at 8am, fasting and without taking Levo that day.
I know Ferritin is poor and GP is happy with it so I’m supplementing with the same meds bought over the counter (ferrous funerary 210g) and will retest in a few months.
B12 is a work in progress too. I’m taking ingenious B-complex and sublingual B12 daily and seen a small improvement. Not sure how long it takes to see decent uplift in these levels.
I have had a negative Coeliac and Pernicious Anaemia tests. Am premenopausal and not vegetarian but have been gluten-free for the last year - I have seen an improvement in my thyroid antibody levels and inflammation markers since this diet change. I do eat diary but only small amounts.
Thanks, I’ll take a look at the previous threads. I had read the posts regarding some evidence of supplementing iron on alternate days so I will try that.
I don’t drink any tea or coffee, mainly water with the odd diet soda (which I know I should stop).
I have seen the recent recommendations for the Thorne Basic B and I will swap to that once my supply has been used up.
I’m based in the north east and there is only one endocrinologist on the Thyroid UK list and that is who I saw.
Thanks, I’m definitely focusing on my vitamins. Been supplementing for over a year now but don’t seem to be able to get them up to optimal levels. Hopefully, I’ll get the combination and dose right at some point.
Just as an aside, my 50-year-old's daughter's ferritin is about 6 and the gp just said go out and buy a supplement, but when it was low before a previous GP prescribed.
Thorne Basic B recommended option that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Before consulting a medic I suggest you make a list of what you want to say....and ask. That used to stop me getting confused when brain fog was a problem
SlowDragon has given you good advice....suggest you follow it
Honestly it is like banging your head against a brick wall with the nhs or some endos. My t4 is below the reference range and they are not fussed. They wouldn’t increase my meds from 50mg upwards even though my tsh was 8.
I think you may have to go private to get anywhere. Keep Work on that ferritin like you are. Hopefully that will help
Ah, I’m sorry to hear that, you must feel terrible too. I find it annoying that we have to go private to get the right treatment.I’m lucky enough to be able to chose that option but there are so many who can’t afford all the private tests and treatment and tbh none of us should have to. They don’t seem to understand it’s about getting back our quality of life, not just test result numbers.
Completely agree. It is a complete joke. I really to feel for anyone who can not fund private treatment. I have had to stop work because I am too unwell. I do have PoTs and ME as well so not purely thyroid related but my main symptoms are thyroid related. The system is wrong and I had to give up on endos and GPS
Are these endos quacks or just sociopaths? Their enjoyment from our suffering is becoming wildly obvious. When people use their power so discriminatingly, I really think they are enjoying it too much.
Hi Harley I had similar results as you T3 28% thro range T4 92% fatigue being big issue ! I was getting nowhere with GPWith guidance from this site I eventually had private consultation with Endo via zoom. He has prescribed T3 as trial also arranged for bloods via GP ( I was surprised they would )
If you’re seeing a private endo, it’s in his best interest to keep you as a patient and he should listen to you and prescribe T3 - that’s what I did, I looked for a private endo that prescribes T3 (got suggestions privately from here) and I went to see him with the purpose of getting T3. And like SlowDragon says above, Thybon Henning costs me around £15 per month, which is not bad at all. But by taking T3 for a while I was able to show my NHS endo how well I’m doing with blood tests and symptoms gone, and she has agreed that I should take it (about a year after she initially said that I don’t need it). So there is hope even if things usually move very slowly.
Agree getting your vitamins and minerals higher ought to help conversion (and could be cause if many if your symptoms); failing that it’s not a fortune to self source liothyronine and see if that does the trick.
It’s bizarre that Docs don’t see the aim is to improve your symptoms not get to a particular number in range. Maybe remind them ranges are just based on people being - statistically - well in that range. It doesn’t mean all individuals are well in that range, just most.
I am finally starting to realise that reference ranges are not much use at all to some of us. When on Levo alone, if my FT4 got as high as yours I felt worse. The higher it got the less I converted, probably because my body reacted and produced an enzyme to reduce hormone levels. I get the names mixed up, but I think it's the D2 enzyme. So reducing my T4 dose would actually help to bring my FT3 back up a bit by calming the D2 enzyme reaction down.
So these days I actually prefer to try lowering a dose a bit first when things aren't right. I can always raise it again later if that wasn't the issue.
Harley , I don't know about things in the U.K., but I have reached an opinion here in the U.S.A. that "Healthcare" is very arrogant when diagnosing and treating thyroid issues and most often get things backwards and just plain wrong. The only ones who routinely do vitamin/mineral panels are "Naturopaths" I believe that is their title. I believe there is a huge connection between the onset/ identification of autoimmune diseases and things that are damaging one's immune systems as well as hormonal upsets. The disadvantage many of us have is we probably know less about how our bodies function than how our autos run! In the U.S.A. most people either look like the "Michelan Man, Woman, Child" or an anorexic ! Even people of an average weigh are not necessarily healthy. My painful experience has caused me to take a deep dive into the evolution of "Healthcare" Post WW II and I have identified some trends over the decades that are more than questionable. I would recommend for you to keep writing and asking questions. I do believe you will get answers to your specific problems through the experiences of others. You don't have all these people posting and questioning like yourself cause all is OK. Once you have been burned it sends you on a seeking journey and many people end up on this site and there is one or two more. In the U.S.A. the "Healthcare Industry controls most everything "Health education wise and they all say the same. I started off on attorney sites. You know the people who get the facts, so as to WIN the cases and believe me they don't pursue anything they are not nearly 100% sure of winning. These people are about money primarily. Actually that is where I learned of this site and another one full of people with thyroid nightmares. All my best wishes you get the help you need cause life every second of it is precious!
You really need to improve that terrible B12 before adding T3 if at all possible
Have you changed to Thorne B complex yet
Which B12 separate supplement are you currently taking
In week before blood test, when you stop vitamin B complex, you want to consider taking a separate methyl folate supplement (eg Jarrow methyl folate 400mcg) and continue with separate B12 up to day before test
So, just got my latest B12 Active results back from Medichecks and it's now >150 (37.5-150) which is great. I took my B12 supplement up until the day before testing but stopped the B-complex 5 days earlier.
Am I right in thinking, I should now stop the B12 supplement and just continue with the B-complex daily to maintain?
No, I haven't switched yet - still working my way through the supplements I have in the cupboard. I'm currently taking 2 x Ingennus Super-B Complex (AM & PM) as this was recommended to me on here last year, plus 1 x Solgar Vitamin B12 Sublingual daily. Appreciate, a B Complex without the Vitamin C is now recommended and I'll get those next time I order.
I haven't rechecked my levels yet as I'm assuming there is no point for a few months. My last test was 15th June so it's been 8 weeks - do you think that is sufficient time to make a difference?
I'm not sure how much longer I can hold off adding T3 as I'm really struggling to focus at work and this has been going on for so long now.
I'll take a look at the Blearyeyed post in the morning, I think it's getting too late for me now as I couldn't digest all the info.
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Update - Endo Visit
T4 and T3
Endo consultation today for low TSH
Endo wants me to reduce T3 and raise T4
The test saga continues!
