Confusing Endo Consultation

[ValTay]

Happy New Year everyone. Hoping we will all find the answers we need.

I'm feeling confused after a recent visit to an NHS endo. I had asked for a referral to him, having found him on the Thyroid UK list, which indicated that he had prescribed T3, and found positive info when I researched him online. I would be grateful for any comments and advice on the outcome of this visit. To set the context, I think it will be helpful first to list some test results:

Date Dose Results Lab

30.03.24 75mcg TSH: 0.189 mlU/L (0.27-4.2) Medichecks

Free T3: 3.8 pmol/L (3.1-6.8)

Free Thyroxine: 18.8 pmol/L (12-22)

31.05.24 100 mcg TSH: 0.02mU/L (0.10-4.0) NHS

Free Thyroxine: 22.7 pmol/L (9-22)

22.07.24 100mcg TSH: 0.026 mlU/L (0.27_4.2) Medichecks

Free T3 : 5.4 pmol/L (3.1-6.8)

Free Thyroxine: 27.1 pmol/L (12-22)

26.07.24 alternating TSH: 0.03 (mU/L(0.10-4.0) NHS

75/100mcg Free Thyroxine: 22.4 pmol/L

26.09.24 75/100 mcg TSH: 0.077 mlU/L (0.27-4.2) Medichecks

Free T3:4.1 pmol/L ((3.1-6.8)

Free Thyroxine: 22.1 pmol/L (12-22)

29.11.24 75/100mcg TSH: 0.037mlU/L (0.27-4.2) Medichecks

Free T3:4.1 pmol/L (3.1-6.8)

Free Thyroxine: 23.0 pmol/L (12-22)

Now for the story! The problems began when I had Covid in late September 2023. Until then I was doing well on 100mcg Levothyroxine. After Covid I had PVF and finally consulted my GP practice in February 2024, and was seen by a nurse who ordered blood tests, including TSH, for which I wasn't forewarned, so it was done late in the morning, and I had taken my thyroxine and had breakfast. As result my Levo was reduced to 75mcg, and within 6 weeks I could barely walk. I had a private test (first results, above), and sent them to the GP Practice with a request for a trial on 100mcg and a test including T3 after 6-8 weeks. This was agreed, and within a week all my energy returned and I could cope with life and do my daily 40 - 50 minute walks easily. But when the NHS blood test was done T3 was omitted (second results above), and the nurse wanted to reduce to 75mcg agin. I held out, saying that I had been very unwell on that dose, and after consultation with the doctor, it was agreed that I could stay on 100mcg for a further 2 months. and then retest. I continued to be well, but decided not to be caught out this time, so had a private test just before the upcoming NHS one. (Third results, above) This gave a very high free thyroxine figure, so I reduced my dose to 75 and 100 mcg on alternate days. However, the NHS test (fourth results above) gave a much lower free thyroxine result, though still over range, and I continued alternating the dose, after a battle with the physiotherapist, who had now taken over, and who wanted me to revert to 75mcg.

Unfortunately at the end of August I again had Covid, followed again by PVF. Finally in November I had a telephone appointment with the GP, who suggested a referral to an endo, which was when I asked to see the doctor mentioned above. The appointment came through surprisingly quickly and I saw him on 4th December. However, his attitude was not what I had hoped for. I had listed for him all the tests shown here, but he waved them aside, saying he had seen my NHS results and they were all he needed. He said that I was overtreated, and dismissed my comment that although TSH and T4 indicated this, T3 was on the low side. He told me that T3 is not important; T4 is the active hormone and the correct way to treat hypothyroidism is to get TSH and T4 in range. On the basis of the history of the effects of two Covid infections followed by fatigue symptoms, he said that my problem is due to PVF, and proposed waiting for that to resolve, then doing a telephone appointment after two months with a view to reducing my dose initially to 75mcg and subsequently reducing further. Noting that my weight is 45 kilos, he said that I should not be taking more than 75. This I think is correct, but I wonder whether a combination of T4 and T3 might be helpful, especially as my results seem to suggest poor conversion according to Paul Robinson's formula.

I'm sorry this has been a long post, but I felt you needed the full picture, and I would really appreciate some advice on the way forward. Many thanks in advance.

[GlowCoach Administrator]

I googled PVF and scaffolding came up. I take it thats not what you meant?

Endo's on the Thyroid UK list are not guaranteed to prescribe T3. The list is just a list but sorry you have had this experience.

Are you able to see a private Endo? This might be more fruitful although again, no guarantees.

Your ferritin was low some months ago. How is that now?

How are your other vitamin levels and what are you supplementing with?

[Jazzw in reply to GlowCoach]

I think it might be Post Viral Fatigue?

[GlowCoach Administrator in reply to Jazzw]

Oh that sounds like it might be right. I'm often in a brain fogged state and working out acronyms is hard work!

[Jazzw in reply to GlowCoach]

It had me scratching my head for a minute too, to be honest. But then the context sunk in and the penny dropped.

[GlowCoach Administrator in reply to Jazzw]

Sort of knew it wouldn't be anything to do with scaffolding. 🤣

[Jazzw in reply to GlowCoach]

[Judithdalston in reply to GlowCoach]

I’ve had Long Covid nearly 5 years and many a day some scaffolding would be useful, especially if on wheels…would the NHS prescribe?

[ValTay in reply to GlowCoach]

Sorry Jaydee, I should have put post viral fatigue - didn't make allowance for brain fog!

Thank you for asking about the low ferritin problem. I had a full iron panel done and was advised on this forum not to take iron supplements but to eat liver and red meat (in moderation of course), which I have been doing but haven't yet retested (all these tests get expensive) so I don't know the current status.

Vit D is adequate. I take 4000 IU daily and have been taking B12, B5 and B6, which have recently run out. I'm am planning to start a B complex but am waiting to test B12 when enough time has elapsed, before doing that. I also take magnesium bisglycinate, Vit K2, Krill oil, Vit C, and zinc. Folate was "normal" when NHS tested in Feb 2024.

Thanks for your concern and advice.

[SlowDragon Administrator]

very sorry you consultation did not go well

No mention of vitamin test results

What vitamin supplements are you taking

What are most recent vitamin D, folate, ferritin and B12 results

Low vitamin levels are much more common as we get older

Looking at previous posts presumably your hypothyroidism is autoimmune

Are you on gluten free or dairy free diet

[ValTay in reply to SlowDragon]

Thank you Slow Dragon.

Latest vitamin test results:

19.02. 24: folate: 13.5 ug/L (>4.1)This was marked normal.

19.02.24; B12: 1283ng/L (160-180) This was done without informing me beforehand so I had not stopped taking B12.

19.02.24: ferritin: 30ug/L (10-291). This was marked normal. However, I had an iron panel done and am taking advice given here after that, not to take iron supplements but eat liver and red meat in moderation, and will retest when funds allow.

Viamin D was "adequate" when tested in August 2024; sorry can't access figures at the moment but think it was 80+ and don't remember the unit of measurement. I take 4000 IU dialy. Also take vit K2, magnesium bisglycinate, krill oil, vit C, zinc, co Q 10, and planning to start B complex soon but need to wait for time to elapse after stopping B12 to take blood test.

Yes my hypo is autoimmune and I am dairy free. Tried going gluten free a few years back but didn't see any improvement.

Hope this helps.

[annnsandell in reply to ValTay]

Hi ValTay,

I was concerned to read that your 'Vitamin D was adequate' but you are supplementing with 4,000 IU which is high strength suitable for a quick increase but not a routine dose.

Vit D is fat soluable and should be taken with your evening meal. Please check your result and retest. I am concerned that you are either overdosing or having difficulty absorbing it. Vit D is of course, essential for T4 conversion, making you feel well and adsorbtion of calcium for bones. I managed to overdose myself on this dose and have cut it down by a quarter but I know when Vit D is low because I feel depressed.

You mention the cost of testing. Your GP should be routinely testing TSH and vitamins 6 monthly to check your dose. Getting T4 and T3 tested is more difficult because labs are not routinely testing it and your GP has to overide the testing.

[ValTay in reply to annnsandell]

Apologies: I made amistake there annsandell; I'm taking 2000 IU, and yes, I do take it with my evening meal, along with krill oil and K2.

Thanks for the tip re: testing. I'll ask my GP for vitamin tests, which have not been done routinely.

[SlowDragon Administrator in reply to ValTay]

more recent post with much improved ferritin level at 68 here

healthunlocked.com/thyroidu...

So keep eating iron rich foods and retest iron panel again soon

[ValTay in reply to SlowDragon]

Thanks for pointing me to my earlier post and replies. That was a good refresher which I'll follow up when time allows.

[ValTay in reply to SlowDragon]

An apology Slow Dragon: I checked my Vit D bottle and found it's 2000 IU, not 4000 as I said in my previous reply. And I'm also taking selenium and manganese.

[Jazzw]

Hi ValTay

What a frustrating consultation. I think many of us will identify though.

Thanks for writing such a comprehensive biography—that really helped me to grasp what’s been going on with you. I think the fact that you were on NDT for a long time before having to revert to levothyroxine because of the extortionate costs is the reason your TSH just isn’t going to come up into range—which means that GPs and endocrinologists who aren’t really worthy of the name are going to totally misinterpret your results. Having been on NDT for more than a decade, I share the same problem. A GP I saw a few months ago for another medical issue threw a fit when he saw my suppressed TSH, then demonstrated how little he understood about what it meant by telling me I’d develop bulging eyes…

You despair a bit really don’t you? And you of course saw both Drs Skinner and Peatfield, so you know how things should be… Sigh.

I don’t doubt that a little T3 might make all the difference (again, it was in the NDT you took for years so your body got used to having a bit more than it has now). But getting it prescribed is probably going to be impossible. There’ll also be some ageism going on, I’m afraid. Most GPs and endos feel totally out of their depth when prescribing T3 anyway, so prescribing it for you will terrify them.

That all said… there might be some things that could improve your conversion. I see from an earlier post that you were aware of iron deficiency—how are you doing with that now? Iron is essential to the conversion of T4 to T3.

Secondly, there seems to be some evidence that TSH is involved in driving conversion of T4 to T3, so when it’s suppressed, less T4 gets converted.

I wonder whether the sweet spot for you might be 87.5mcg levothyroxine, to bring your T4 down just a tiny bit? You could achieve that by taking 75mcg and 100mcg levothryoxine on alternate days.

[Judithdalston in reply to Jazzw]

My Gp had the long suppressed TSH causing DEATH recently!

[Jazzw in reply to Judithdalston]

It makes you wonder doesn’t it? Is it just thyroid conditions they’re so ignorant about? (That’s a rhetorical question…)

[ValTay in reply to Judithdalston]

Oh yes, I forgot to mention that he did also treat me to the dire warnings of atrial fibrillation (life-threatening), osteoporosis and fracture risk.

[Judithdalston in reply to ValTay]

but obviously not quiet a bad enough threat that the grim reaper had to be mentioned as back up!

[ValTay in reply to Judithdalston]

Well, it was implied. But perhaps he thought that at 84 I wouldn't be too bothered!

[buddy99 in reply to Judithdalston]

Why, on earth, are physicians always so quick to threaten death, when they want you to follow THEIR opinion? And your opinion could well be another doctor's opinion (who also threatened death? ).

[Judithdalston in reply to buddy99]

it’s like a game of Top Trumps and their threat of death is worth more than ours! Who holds the winning card Gp v consultant…that’s a throw of the dice!

[ValTay in reply to Jazzw]

Hi Jazzw, thankyou for your sympathetic and informative reply.

I hadn't fully realised that taking NDT until 2021 would still be suppressing TSH, though I did know that simply being on any thyroid replacement for 28 years would have that effect, and as you say this leads to results being misinterpreted.

Jaydee and Slow Dragon also raised the iron deficiency issue, so you can check my replies to them on that. A work in progress I would say. Interesting that iron is essential to conversion - I'll keep that in mind as an incentive. I didn't know that the suppressed TSH also can negatively affect conversion. You are a mine of useful knowledge!

A good suggestion re: alternating 75 and 100 ug; I am in fact already doing that, though the endo wants to eventully reduce to 75 and then possibly below!

All the best with your thyroid journey!

[Tina_Maria in reply to ValTay]

Well, you know best yourself what you would need to feel well. If your endo insists on reducing your levothyroxine, I would ask her if she does not want you to feel well? And if she was in your shoes and someone would ask her to reduce her medication knowing full well it would make her ill, would she 'follow' the advice or would she rather feel well and able to function?

[ValTay in reply to Tina_Maria]

Good advice, thanks! Trouble is he has such an air of "I'm the expert and I kbow how to treat this condition", that it's not easy to reason with him.

[Tina_Maria in reply to ValTay]

Well he just has to suck it up!! 😆 If he actually knew how to treat you correctly, you would not have symptoms, or?!😉

[ValTay in reply to Tina_Maria]

True, but to be fair, I've only seen him once so he's not responsible for what has happened up to now. I'll see how he handles the next consultation and attempt to reason with him if necessary.

[diamondial]

Just one thing to add/ask about is his comment: "He told me that T3 is not important; T4 is the active hormone and the correct way to treat hypothyroidism is to get TSH and T4 in range." I understood that T4 is the storage hormone and T3 the active hormone. I'm assuming he got it the wrong way round?

[Judithdalston in reply to diamondial]

Yes!

[ValTay in reply to Judithdalston]

Yes indeed, but it was clear from the flow of the conversation that that was really what he meant. I was too gobsmacked to reply.

[diamondial in reply to ValTay]

The ignorance is quite alarming!

[buddy99 in reply to diamondial]

I had an endo tell me that T3 has no function. It makes you wonder about competence. I asked a second year med student pretending I did not know about T3 and got a lecture about T3 being the active hormone etc. So they do learn this at some point, but must forget again or....they are being manipulative by stretching the facts to suit their goals (?).

[ValTay in reply to buddy99]

Or, are they themselves being manipulated? Are there incentives for keeping people on low dose monotherapy?

[buddy99 in reply to ValTay]

That is a very real option. I think that doctors are under considerable constraints on so many levels. The same endo also told me that testing for FT3 was a waste of tax payers' money. So it is definitely about finances in many cases, not just thyroid, I assume. I feel there are so many things going on behind the scenes that we are not aware of (and not supposed to) that contribute to both doctors and patients suffering.

[Donna78lu in reply to buddy99]

sadly t4 costs pennies whereas t3 costs pounds , as long as they are giving t4 they are treating you. None of us want to hear this but it’s very true.

[buddy99 in reply to Donna78lu]

For me it is not an issue because I have to pay for my meds. In that way I'm not a burden on our healthcare system. So when it comes to cost, doctors could prescribe it. I can see, though, that in situations where somebody else has to pick up the tap cost is a factor. Also, depending on what is treated instead of the low FT3, things like depression, pain, fibromyalgia, CFS etc. (some of which share symptoms with low T3), it could get a whole lot more expensive. But again, I don't really know what is going on behind the scene and whether everything is always well thought through.

[ValTay]

Oh poor you - what a frightening experience! So glad you survived but you are probably wise to avoid Covid jabs after that.

[annnsandell]

Totally agree, I have had COVID, rather bad right at the beginning and husband very ill but refused to go to hospital. We had the first round of jabs but have refused since because they made us very ill. I'll risk that I have some ammunity rather than another jab. I also query whether the jabs are the right strain of COVID going around, they certainly weren't last year.

[ValTay]

How depressing - for all concerned. I would hate to be a doctor in such circumstances, wanting to make people well but fearing for my job.

[PRJ20]

after a battle with the physiotherapist, who had now taken over, and who wanted me to revert to 75mcg.

I'm sorry to ask the obvious, Val but, what on earth does a physiotherapist know about thyroid function and what[ever] is your practice thinking of handing over the care [of your thyroid] to a physio??

Incidentally, my current practice I'm trying to get away from (just as soon as they resolve a long-running complaint I've had with them re sorting out my notes that have had more doctoring than I have!), isn't any better re allocating HCPs to deal with my many problems that have ensued from never being treated correctly for AITD and TED: one of the more recent ones just over 2 years ago (end of 2022) was when I received a text at asking me if I'd "thought of having a hormonal coil - or some other coil - fitted as a form of contraceptive?" Fair enough? I'll now add here: not only did I go through an early menopause years ago (probably about 25-30, after being perimenopausal for about 8 years following the birth of my [now deceased] daughter); haven't been in a sexual relationship since then; in fact 'came out' as asexual in 2019 (I didn't think it was important to inform medics of this under the circumstances!); and, here's the crunch, in early 2022 I had actually turned 70! I later found out that this text had been sent either directly by their recently employed Physician Associate, who oversaw the 'contraceptive clinic', or certainly at her behest. Needless to say, I didn't take up the offer nor did I feel the need to do battle with her, though it is forming part of my complaint against the practice.

Last but, my no means least, I'm so sorry to had this negative experience with an Endo: it beggars belief how much ignorance of the workings of the thyroid is out there. If it wasn't for this forum, like many others, I'd be absolutely lost and probably still taking the absolute cr@p and gaslighting thrown at us.

[ValTay in reply to PRJ20]

Yes, totally agree with your first question. It just shows what a terrible state the NHS is in now, that they haven't enough appropriate staff to deal with patients' needs. And as your experience shows, this can end up with a total muddle and inappropriate suggestions. Incidentally, I'm sorry that you lost your daughter. I, too,lost one of my two daughters, to gall bladder cancer seven years ago, so I understand the pain.

I hope you succeed in your complaints against your GP Practice. What would we do without this forum?