Had an appointment with an Endocrinologist today (a professor) who tells me one in 100 women have UAT. He only goes by TSH, says GP’s should have a good understanding of how to deal with us as this is common (told him mine has little understanding) He went on to say He does not have any patients he prescribes T3 medication to at all, says it’s not helpful. He has upped my levo as I knew I was under medicated. Said thyroxine really is all we need. I asked his opinion of how can I improve my health as my Hashimotos is a massive drain on my life, the answer in his opinion ‘thyroxine’. One of those meetings you waited ages for and you come away with very little. It’s no wonder we are frustrated!
Meeting with a Professor of Endocrinology - Thyroid UK
Meeting with a Professor of Endocrinology
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Bollieforme
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Oh you poor thing. How disappointing. How sad that he doesnt consider T3 for any of his patients..........sounds like he was showing up his own ignorance rather a lot. Was he on Thyroid Uk list of thyroid friendly doctors? If so please feed back.
He is in South Yorkshire, I’ve yet to meet an Endo that gets what his patients are telling him, I’ve seen two nhs and one privately in the last 14 months. It’s a long haul as far as the meds are concerned just need to be on the right dosage of levo then wait to see if it’s right, it’s a shame it’s not an instant feel good thing though. Good luck to you too.
SlowDragonAdministrator
Your previous post shows you are extremely under medicated with a TSH of 15
Many people do manage ok on just levothyroxine.....but about 20% often need T3. And an increasing number of endocrinologists are pro T3
But until you get dose up high enough and all four vitamins optimal you won’t know if you will need T3. If you can manage on just levothyroxine it’s much easier
Presumably you have increased dose levothyroxine up by 25mcg
Bloods should be retested 6-8 weeks after each dose increase
Essential to test vitamin D, folate, B12 and ferritin too
Please do you know of a thyroid friendly doctor in Northampton.I am realy struggling, Thankyou
Sent you a private message
Also email Dionne at Thyroid UK for list of recommended thyroid specialist endocrinologists
thyroiduk.org/tuk/About_Us/...
Thankyou
I’m sorry I don’t but gather the Thyroid Org has a list of doctors they could perhaps recommend someone for you.
Thanks for your reply. Yes dosage has been increased by 25. So a re test in 6-8 weeks.
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).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
EXTREMELY important to test vitamin D, folate, ferritin and B12 . Low vitamin levels are extremely common and improving these to optimal levels frequently helps improve conversion of Ft4 to Ft3 and improve symptoms
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
It’s taken a long time but I now realise Professorship or academic titles mean very little in terms of understanding. It is possible that people only understand on a very simplistic level and a shame your expectations were so let down.
He's reciting a script.
He sounds just like my Endocrinologist who offered me counseling when my TSH was 9 and I felt dreadful. I would see another one if I was you because he sounds like he is a drug rep for Levothyroxine ... only joking btw. Not everyone gets on with Levothyroxine and although I have taken it in the past I prefer NDT which contains both T4 and T3. A lot of these so called experts seem to have no understanding of thyroid disease and I wonder what they were actually taught at medical school. I have learnt more about this disease from support sites in the US and here in the UK than from any Doctor.
Oh I agree Lora7again..... I went for counselling for almost a year as my GP convinced me I had ‘health anxiety’ . It was this forum that highlighted I was undermedicated not going out of my mind! I am eternally grateful for the knowledge & support of forum members for that.
in reply to Buddy195
Same here. I now self treat. Scary that you get better (and more reliable) advice from the internet than a qualified doctor or specialist.
I'm kicking myself that I actually went along to the counselling sessions for several months and that's now on my records. Gaslighting at its finest.
Sack him and fine another one or a functional doctor
Hope he never gets it - he may find he needs counselling if he does! There’s nothing like a closed mind in the medical profession. Lazy doctoring at its best! 🤸🏿♀️🥛
He may be a professor but he is clearly working outside his sphere of competence. He should not be giving advice to patients with hypothyroidism if he doesn't recognise that exogeneous T3 is important for some patients. In your case, it may turn out he is correct to raise your T4 because that is the solution for the straightforward cases of hypothyroidism. But he's never going to be able help anyone with the more complex forms of hypothyroidism if he doesn't accept that T3 has an important role to play in those cases. He's probably one of the medical profession who viewed the late Dr Skinner as a maverick.
I think I find out more from you guys and grateful that we share knowledge through first hand experience.
Professor of endocrinology, I wasted my time seeing two of those. I have since written to one of them to say how I got well, the other one retired.
The best possible investment - I tell everyone - is to read all of dr Izabella Wentz books and purchase a copy of her thyroid documentary series called thyroid secret. This professor should too!
Levothyroxine is not going to make you feel well.
Starting with optimal vitamin d and b12 is the starting point, gluten, dairy, soy free
Read dr Sarah Myhill’s info on her website too
Hi
Dr Myhill’s page is available for all to read on DrMyhill.co.uk and in the search engine on the home page you type in orchestra.
In this order it’s diet( and no she does not ban organic soya). She wants her patients gluten dairy and sugar free. Low hi load food with plenty of organic veggies some meat and loads of healthy fats like coconut oil/ cream.
Absorption - no sense in paying fir supplements if yo aren’t absorbing them fully.( a comprehensive stool analysis is a good test).
Vitamins b12 vit d folate ferretin and she likes her patients on decent doses of vit c and antioxidants.
Then the thyroid and adrenal gland.
She expects you to monitor your own temps aiming for 36.50.
She agrees with Dr Lowe here test early on then do your temps. I did this and I saved a fortune in blood tests.
Sadly with 5000 she’s full but every jan- March she generally takes on some correspondence only patients and each year has a different topic say adrenals and will write to everyone who applies. It’s worth checking her web site.
I am fortunate to have got a place on one of her workshops in a few weeks.
I met her at the get well show a couple weeks ago, I cannot wait for her new book
Thank you
I had an appontment with a profesor of endocrinology yesterday, too! And The same info: T3 is harmful and conversion problems dont exist. Just levothyroxine is what he recommends. They attend the same meetings! Novothyral is dated, NDT is not scientifically researched, feeing unwell after euthyrox is unbelievable. And I am an alien😁 Ive lost any hopes for effective treatment.
oh my i cannot believe all these posts. i had the same experience. i was advised by my endo that t3 is not helpful and has told my gp to only test for tsh and T4. She has reluctantly agreed to put me on a trial of t3. i say reluctantly as i was on thiroyd NDT for three years and was doing fine. i even managed to lose some weight. however, due to now being retired and on small pension, plus i can no longer obtain thiroyd from my supplier, i can no longer obtain thiroyd. Plus my gp and endo were not happy with me being on ndt and said they would not be able to offer further help with my condition if i continued to take thiroyd (they are no help anyway lol). I had been on levo when i became hypo after RAI but my weight went up at an alarming rate and my face puffed up and i did not feel that well, still tired achy etc. this is the only reason she has added some t3 into my treatment. however, the letter to my gp states that as my tsh is suppressed it would be expected to decrease my dosage. As Evita says, i also have lost hope of obtaining effective treatment.
Just wonder why they are so obsessed with controlling my pituary gland! Im personally absolutely in order with it- its commonly known indications vary all the time and its necessary to survive. My gland stops calling my Thyroid really very soon after getting T4 or T3 or both. And it knows how to adjust, thanks God. That reminds me a strategy of counting calories- a complete failure due to igoring bodys wisdom.
Whereabouts do you live? Sounds like my endo. I have lots of T4 sloshing around in my blood even when they keep reducing the dose. It just doesn't go anywhere!
I’m in South Yorkshire
Warwickshire. Sadly they are the same everywhere.
I find out more through other people with the same problems, good luck on your journey.
TSH 15.25 (range 0.35-4.94)
Free T4 11.7 (range 9-19.0)
T3 3.5 (range 2.6-5.7)
Your FT4 is 27% through the range and your FT3 is 29.3% through the range.
Both should be at least 75% through the range.
You are seriously undermedicated and need more thyroxine as the endo advised..
That may not be the full answer but at this stage I doubt T3 is. However his apparent lack of knowledge about the value of T3 is disturbing. The endo I saw said he had lots if people asking for T3 when there was no clinical need - their interpretation if "clinical need" however, is shockingly poor! Like many here I self medicate as a result!
Ther is no clear evidence at this point that your conversion is poor or that you need T3.
Alternating levo 50 mcg/ 75mcg is leaving you undermedicated ....these are low doses.
You definitely need the dose increase and that should be followed by another test in 6 weeks....that advice was correct.
Low hormones (as well as Hashi's ) will make you feel very unwell
Have you trialled a gluten free diet for Hashi's it can take weeks to show improvement so you need to be patient.
Have you tested folate, ferritin, vit D and vit B12...all should be optimal for healthy thyroid function.
Did you ask this prof for T3 or did he volunteer that he did not prescribe the hormone?
I'm no great fan of endos but I think you need to follow his advice at least until you get the next set of tests/results in 6 weeks time.
If post- increase results indicate you are not converting (high FT4 with low FT3) then further investigation will be required and possibly the addition of some T3
The high TSH is likely to be a Hashi's flare and will drop....as it did in before.
The correct dose of thyroxine, with a GF diet should help.
Sadly there is no quick fix (eg headache/paraceramol) but I hope the increase will show the way forward. The best advice I had was from "Dr ThyroidUK" post your next set of results, after the increase, and take member's advice thereafter.
Readas much as you can about the thyroid!
Best....
DD
Hi DD thanks for your detailed reply, much appreciated. The Professor knew my results but was keen to report that he didn’t think T3 meds were necessary. I responded saying I wasn’t pushing for it but wondered if it may benefit me. You can certainly pick up the vibes when a specialist is not keen. I asked about his thoughts on a gluten free diet, said I was almost 70% gluten free, he replied saying this wasn’t necessary and that gluten is ok for us and not enough evidence to recommend it to improve. Before I went in I guessed the outcome of the meeting, I’m with you on the self medicating front, think we have to go that route when the so called professionals don’t help us.
All the best to you, Lynne
We've all just got to remember that the difference between God and an Endocrinologist is that God doesn't make him/her self out to be an Endocrinologist.
SlowDragonAdministrator
How much levothyroxine has dose been increased to?
100mcg ?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
healthunlocked.com/thyroidu...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Come back with new post once you get vitamin levels tested
My endo prescribes T3, it's incredible how much better I felt within days. My GP has very little understanding of the very complex thyroid issues. I had a gene test (not available on the nhs) outrageous!! I paid for it and it proves I cannot convert T4 to T3 effectively. I took me 16 years and a German professor to finally receive help.
Don't give up.
Yes, outrageous....it took me nearly 50 years and many private tests
I'm 74!
Well, "professor" doesn't mean the best academically - in a university it's an admin title (like manager) and in a hospital it just means the meanest bar steward on the block (the boss).
Another Endo who thinks his degree is smarter then his patients who live in hell every stinking day! It's a shame but TSH is king in the medical world and I don't think many of us would mind that as long as the other labs were done along with the TSH and patients health concerns/issues were taken more serious, at least I wouldn't.
Healthcare has a serious problem when patients are force to self medicate!
I don't agree with any Doctor that believes T4 meds is more important than T3 I think they both need to be equally weighed based on each patients needs and from my own health battles I was a raging lunatic with mood swings that terrified my family until T3 was added along side my T4.
Sorry your Endo was dismissive, if it were me I probably would never go back.
A professor who "Professes" to know what he's talking about but doesn't!
I have been on Thyroxine for 12+ years 100mg? and went to Endo - he reduced Thyroxine to .75 and added .5 of Cytomel (half to be taken twice a day) seemed to give me much more energy and thought everything was good - then hair started falling out - a lot! Went back to him and he said Hair loss is not a side effect. If you google it there are 400 documents saying that hair loss is a side effect of Cytomel. He is also bald and told me if I can't grow my own hair I can't help you with yours. OMG do they just think we are stupid?????
How weird. I had the hair loss long before I began taking Cytomel. Maybe Cytomel has a time machine? It transported itself into the past to cause my balding?
Interesting. Get a thyroid test done as a baseline then up your T4 back to 100. If you feel too jittery drop it back by one half of the increase (ie as close to 12mcg as you can get so that you are now taking 87mcg Levo) and repeat until you feel well. Get another blood test to make sure you are not too far over range with either your FT4 or your FT3. I just suggest this because I had the opposite, hair dropping out when I had too little T3.
Professor eh? Sounds like a case of "in the country of the blind the one eyed man is king".
I have had a thyroid problem for over 30 years. I recently had an appointment with Endo as my blood was all over the place and had been for years . The first thing she asked was how I was taking my thyroxine when I told I took it with a drink first thing in the morning ,she asked what drink I told her juice. She then explained that it should be taken with only water and at least 1/2 hour before having anything else to eat or drink. Lavothyroxine is very sensitive and to give it the beat chance to get in to your system was to do this. I have been taking my medication as she advised now for several months and am feeling great.
Hi Bollieforme.
Sorry you are having this problem. Do you mind me asking what area of the country you are being treated in?
Sue
In South Yorkshire
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