I know I am unable to discuss individual Doctors here, but thought it might help others to mention what happened at my NHS endo meeting. I saw a female endo via the NHS yesterday, who is based in Truro, Cornwall and off Thyroid UKs list of Endos who (amongst other things) may help with low DHEA (my problem).
I was left feeling confused, belittled and helpless.
I was told that:-
my 5,000 iu is vitamin D is dangerous and I must not take more than 800 iu per day. My GP recently congratulated me on getting my dire level of about 22 up to around 100, and said “whatever you’re doing, keep at it”.
my low cortisol would not cause insomnia and she had never heard any patients with low cortisol complain of sleep problems
She asked whether I took a multivitamin tablet - upon the advice here, I take the recommended supplements, K, magnesium, selenium, D, complex B vitamins and high dose C. I didn’t even try to explain…
I asked whether it’s worth me having the DI02 gene test. She didn’t seem to know what this was and said there are lots of gene tests, I explained about it showing if you’re converting properly and she asked, “converting what”? and looked totally confused. She said Thyroid UK do not recommend this test, although there’s actually a link about it on their website. I was just curious if it would help me to obtain the appropriate treatment, as others have suggested
She said “are you just here to try and get T3?” I have sourced T3 privately, but now don’t think I necessarily need it from blood tests, and was there about my low cortisol/DHEA, not my T3.
Apparently my 18 years of chronic insomnia is in my head and just a habit, and I likely don’t sleep as I’m subconsciously stressed about not returning to a high flying job after having children, even though I am quite content being a house wife, I just mentioned that I’d like to return to work now the children are at school for the money.
I was only able to mention a couple of my symptoms and offered to tell her other related symptoms, but she didn’t want to know
I would not recommend this endocrinologist and have asked Thyroid UK if they want any feedback. This is the only time in my life I’ve left an NHS appointment and burst into tears. I was not treated with any sympathy or any bedside manner whatsoever.
I know a lot of people on here struggle getting anywhere with endo appointments, and I wanted to share my story, so others don’t waste time driving miles to see her with hope, like I did.
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I feel for you. I had a similar appointment with a private endocrinologist in London and afterwards sat at Paddington Station in tears. I felt totally humiliated and although I am good at standing up for myself, it was impossible when faced with his belittling attitude.
It is a pity she was on the TUK list but now removed, we hope. It was not your fault. There is absolutely nothing you could have done when faced with that level of intransigence.
Thank you for your reply. It’s awful that you experienced such vile behaviour too, but reassuring that it’s not just me. I wouldn’t mind if I’d gone in obnoxious and cocky, but I am a decent person and was polite in every respect.
Did you go onto find anyone decent? I’d drive anywhere now if I knew of someone good. Appreciate details can’t be posted here, but anyone reading this is welcome to private message me.
Thank you for sharing. I had a very similar experience with a private Endo in Manchester, completely put me off exploring what’s going on for fear of more gaslighting. It’s really horrible but validating to know that others go through similar and it’s not ‘all in our heads’. Sending best wishes, A.
Hi many thanks for your support. I am currently on 125mcg, and have insisted on the same brand for years.I am currently not taking T3. I have tried it a few times and other than losing a little weight, I didn’t feel any better. Can I try it on its own at night or do you have to take it by day too? What dose should I take at bedtime? I did split doses when I took it although admit I wasn’t sure how to adjust my levo, so carried on and didn’t suffer any adverse effects.
I have been strictly GF for 4 years.
Yes I have read about DIO2 enabling T3 prescription, although came against a brick wall with the endo when I dared to ask. Do you think it’s worth doing?
Where do I turn from here? There’s no one else on Thyroid UKs list nearby in Cornwall, am happy to travel but now don’t know who to turn to?
I’ve been on 125mcg of levo for a few years now. I’ve taken levo for around 28 years and always been 100-125mcg.
I take Accord, formerly Actavis.
My recent thyroid bloods were around FT4 19.1 (9-19)
TSH 0.004 (0.35-4.94)
I always ask for a blood test first thing and am aware of holding off my meds prior to testing.
My GP is very good and always asks for FT3, but the lab refused on this occasion. The above was whilst on T3, hence the suppressed TSH. I haven’t retested since stopping the T3, but my TSH has always been below 1 whilst I’m taking my levothyroxine.
I try to take my levothyroxine in a morning, I never take it at night in case it affects my sleep.
I will have to check my file later for when vitamins were last tested. I have had them done many times over the years, and always ferritin is towards the bottom of the range, and everything else is fine - except the D which is now corrected and maintained. I have eaten pate until I can no longer face it and I could probably do with eating something but I don’t think I can eat liver or pate anymore!
Yes indeed I have always described being woken like a shot of adrenaline whilst in the middle of a deep sleep at 1-2am. I subsequently read about low cortisol making the body release adrenaline at this time. I mentioned it to the endo but she didn’t seem interested and I suspect didn’t know what I was talking about. I have tried protein at bedtime, melatonin, Ltryptophan plus natural things like valerian. Nothing touches it other than antihistamine. This mostly worked all the time, but after a few years on it, I’ve noticed it not working as well.
I hope this is of help and look forward to your advice. 😊
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Meanwhile Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Suggest you test at least TSH, Ft4 and Ft3 now via monitor My Health
And ideally test thyroid and vitamins once year via Medichecks or Blue horizon
Thank you, yes I am aware of most of this, but thanks for reiterating. I didn’t realise levothyroxine at bedtime could help. I will start to take my tablets at bedtime and see if that helps. Should I throw in some T3 as suggested above or just do the bedtime levo first?
SlowDragon please can you elaborate on where you asked if I wake with a surge of adrenaline? I have read about low cortisol causing a surge of adrenaline in the early hours. This is, I believe, what I need to fix, but don’t know how. Do you have any advice please? Thank you.
Yes you can take 1 dose of T3 at night. Start at 5mcg or quarter of a tablet and see how it goes. Folks sometimes only need a little. Like everything else it is trial and error to find what suits you. I spent 2 years adjusting my levo and T3 doses and now a year on from that I am just beginning to see a bigger reduction in symptoms. It can be a very slow process.As for DIO2, as you have discovered not all endos accept it. I know that some of the endo team that I am with don't acknowledge it as a valid test.
Many thanks Lalatoot. I will try a small dose at bedtime and see how I get on. Am willing to try anything for some sleep. Decades of chronic insomnia sucks. You can cope with most things after a decent sleep, but I struggle to cope with things feeling so tired. Best wishes.
SlowDragon could you explain why as I’m gluten intolerant it’s inevitable I’ll need T3 please? Am curious as my T3 has always been towards the top of the range, even without taking T3. So am wondering if I should try it again.
Also, you mentioned about taking my levothyroxine at night to help insomnia. I did try it last night, although forgot I also take antihistamine at night. Should I therefore not do this in case it interferes with absorption please?
I am so sorry you had such a rubbish appointment. Honestly I think they are all a waste of time. I have paid endless specialists etc and was always all for nothing.
I find it very difficult to discuss these things without starting to seethe that the service provided is so totally unsatisfactory and I feel your frustration. Truly.
Personally for me, the only way forward is doing it yourself. It takes time and it’s like a jigsaw puzzle and it may not be perfect but it’s better by far than what you’ll get from doctors and whilst we have to self source and pay for medication at least we pay for something worthwhile rather than some incompassionate, unknowledgeable, flippant twat with a superiority complex. Off soap box. Lol.
Hope you feel better about it now. How you felt says everything about that doctor and absolutely nothing about you x.
Many thanks, you are so very right. I have been trying to sort my insomnia for years through help on here. I feel like I’ve come to the end and have tried everything but DHEA. My gut feels it’s worth a try, but as I live in the UK, it’s not available.
I can’t help you with that I’m afraid. My last attempt at paying for help was for female hormones. Louise Newsome clinic. Incredibly disappointing.
I apologise but I often get confused with Dhea. It’s seems to be incredibly complex and I’m assuming your are talking about it in connection with your cortisol being too high? Or possibly low cortisol equalling high dhea? Forgive me but I’m gradually working through things!
My DHEA is low and my DHEA to cortisol ratio is also low. I don’t confess to understanding it all, but I do know anything at the bottom or below range needs fixing. 😊
I'm tired, but suspect that's to do with not sleeping properly. That also makes me sometimes have mood swings, again is it my hormones, or attributed to insomnia? Struggle with my weight, although am a size 10, I have to work at it, but I would definitely be more active and eat less if I slept better.I feel all my symptoms could be put down to my insomnia. If I could fix that, I could feel on top of the world, lets hope it gets fixed!
So CornishChick, what exactly is your thyroid doing? Have you checked your own levels lately? Do you feel that you adequately medicated. I’m sorry for the question but I only did a quick read of your profile and note a number of symptoms that would seem thyroid related. I have personal experience of several of them and can say that during a trial of t3 at various doses most abated at some point. Even though I’m still a work in progress.
Hi yes I agree, symptoms of insomnia are exactly the same as thyroid problems in many respects. I've had hashimotos for 28 years, so am aware and understand your thoughts.I have regular blood tests and my TSH is usually below 1, my FT4 is towards the top of the range as is my FT3. I have tried T3, and my bloods went above range. I have to admit though that I was doing extensive research to work out how to dose, but wasn't following a doctor's guidance. I wonder if NDT may work for me?
The only thing that improved with T3 was a slight weight reduction, couple of pounds maybe, otherwise I didn't feel any different. I was splitting my dosing into three in the day, and taking a 'CT3M' dose in the night if I was awake - I dare not set my alarm for CT3M as I'm fairly sure I wouldn't get back to sleep! Bit of a chicken and egg really, as CT3M could very well help my insomnia.
I doubt if I doctors guidance would be of any benefit. However I would say that I am off t3 and trying higher dose t4. What I have noticed (and I’m sure that my bloods will confirm when they come back) is that my t4 will be maybe 19-20 and I think that’s too high for me. I am planning to introduce a weeny amount of t3 at this stage and go from there. I wonder if there maybe something in that for you? Sorry it is definitely not my intention to tell you to suck eggs and 28 years you are probably a pro at it. Simply that for the last year I have tried high doses of both and low doses but think I rushed it as I was desperate to feel better. At certain points I felt great and literally all symptoms lifted but only for a limited time. This makes me have faith that it is possible to get it right but it is literally keeping on keeping on!
Also I have read on another forum an awful lot of people seem to do well on NDT but not on synthetic 🤷♀️
I’ve still loads to learn so all ideas much appreciated! I have tried introducing a small amount of T3 a few times, but it has no effect. I think I’m okay on levo tbh, it’s maybe my adrenals that have now shot it! CT3M is Paul Robinsons method of increasing cortisol and helping some people feel amazing. You set your alarm about 3 hours before wake up to take your T3. It has worked miracles for many.
LDN is low dose naltrexone. I do take that and it made me feel so much better. I’m sure it’s helped my thyroid, I possibly need to sort my adrenals now?!
I had read about LDN. But it all seemed conflicting and I couldn’t decide on it - not for me btw.
Interesting on the CT3M. Mine is high so i hadn’t done much looking into low cortisol. Thanks for the tip. I will check it out as always useful to get a grounding.
I’m with you on the t3. Felt great for a period of 3 weeks maybe 4 then no change or I felt under again. Then when I went high my heart beat raised so much I would lay in bed with feeling it. So thought maybe I actually don’t need it 🤷♀️ But I have to say after almost 12 weeks off it I think I do. But I’ll see. Im determined to take it slowly. Im sure there’s a balance like most say. It’s just finding yours.
I oh so wish you the best with finding what helps. Insomnia must be awful. I get spells but nothing as long suffering as you and I really feel for you. Sleep is such a basic that to be deprived is very hard indeed x.
Yes. A long wait and it was another costly mistake. I briefed her on my history but basically got what she would have given me anyway no doubt and I could only use them for a month before I was bedridden. Literally. I should go back and tell them but what’s the point. Seems I learn the hard way.
I can only sympathise with you. Unfortunately, in my experience, endos are by far the worst doctors when it comes to thyroid disease...even worse than many GPs. They simply do not know enough about thyroid disease and treatment, nor about the connection between thyroid and adrenal glands and sex hormones. I have only seen one endo in my life and decided never to make that mistake again. That endo told me, among other things, that T3 is dangerous as it is used by body builders who want to build muscle mass. He also said that only the TSH matters when taking thyroid hormone and that it is myth that people on levo can feel hypo.
I am telling you this only to stress that endos will most likely not be able to make us feel better. For that, they would need to know their hormones, and most of them don´t. It would seem most of them specialise in diabetes as that is where the big money is.
Is there any holistic/naturopathic/alternative/integrative physicain where you live? They tend to know their hormones and also treat the endocrine system as a whole. Depending on where you live, maybe members could recommend a good doctor near you?
Many thanks, you are spot on! Yes indeed this endo was only interested in TSH, even when I asked how she’d measure FT3 levels, she said with TSH results!Lyn at Thyroid UK has suggested someone, I’ll try that route but very grateful for any private messages of recommendations in south Devon or Cornwall preferably. But I will travel anywhere for help to get some sleep. I was coping well considering, but this endo has knocked the wind from my sails and put me into a very low place within the space of 30 minutes.
Thank you, I have sent Thyroid UK details and she’s been removed. I’ve also been privately messaged by another member who has had a dreadful experience with her. She was the worst NHS professional I’ve ever encountered and I hope no one else from here wastes their time and emotions hoping for help.
Apparently my 18 years of chronic insomnia is in my head and just a habit, and I likely don’t sleep as I’m subconsciously stressed about not returning to a high flying job after having children, even though I am quite content being a house wife, I just mentioned that I’d like to return to work now the children are at school for the money.
I have had chronic insomnia since I was a child, so I can empathise completely. How dare that doctor make up stories about you just for her convenience, so she can get rid of you without treating you!
Have you ever had a saliva cortisol test done? Was it high or low or okay? High levels of cortisol will ruin sleep because the early part of the night is when cortisol is supposed to be at its lowest.
I haven't investigated the effects of low cortisol on sleep, but I wouldn't be surprised if it ruined sleep somehow.
Thank you humanbean. You have my utmost sympathy, insomnia is a cruel condition.
I have previously posted two cortisol saliva test results, and have had superb advice from you previously. Both showed lower than ideal cortisol, but not drastic, and both showed very bottom or just under range DHEA. One had dubious results which you picked up showing multiple coincidences of the same figures, but broadly they were fairly similar results, the second test showed a decline in my results since the first test.
I have researched low cortisol and low DHEA and both say insomnia is a symptom, although not if you ask my endo!
I very much suspect she’ll treat me with testosterone if that is still showing as low, that is what she said when I asked if she’d prescribe DHEA. Thyroid UKs list of endos suggested that she’s previously prescribed DHEA. I emailed her before I asked my GP to refer me to her to check, and she replied stating that she would prescribe DHEA if it was low.
My concern is if I my testosterone is low, I don’t actually need it. I sought advice from Paul Robinson and he said
“Testosterone is low but because SHBG isn't that high, the testosterone won't be bound to too much SHBG. Hence, the free androgen index is ok”.
So he suggested I don’t need testosterone. I read this to my endo and she looked completely blank. I’m fairly sure she didn’t understand any of it. I admit I don’t, but then I’m not an endo, but Paul seems extremely knowledgeable on the subject compared to her. These were my last results:-
Testosterone 0.5 (0.5-1.7)
Albumin 43 (35-50)
SHGB 55.7 (14.7-122.5)
Free androgen index 1 (0.7-8.7)
The endo ran another load of bloods. She was coy as to what, but I suspect from the conversation she may have included at least some of these.
If you or anyone else has anything to add on whether I need testosterone given Pauls advice, I’d be most grateful. She’s ringing me with the results, so I’d like to be fully armed prior to the call.
Thanks again, you are and always have been an absolute wealth of knowledge and I am always so grateful when I see you’ve posted something. Thank you.
The endo ran another load of bloods. She was coy as to what
I hate it when doctors won't even tell patients what tests they are running. And I think it almost certainly breaks the law. Anything that a doctor does to you could be construed as assault if you didn't agree to it being done, and that includes blood testing.
Testosterone 0.5 (0.5-1.7)
Albumin 43 (35-50) 53% of the way through the range
SHBG 55.7 (14.7-122.5) 38% of the way through the range
Free androgen index 1 (0.7-8.7) Approx 4% through the range
I had a private testosterone test a few years ago - it was offered as a "free" extra so I took the opportunity to get it measured. I don't know how important this is in the case of testosterone, but just like thyroid hormones can be Total or Free, this is true for testosterone too. The reference range you've given suggests that you had Total Testosterone measured, just like I did. But testosterone is carried round the bloodstream attached to transport proteins like SHBG - Sex Hormone Binding Globulin. Albumin is also involved in the transport of hormones.
The wiki page on SHBG has this to say :
Testosterone and estradiol circulate in the bloodstream, loosely bound mostly to serum albumin (~54%), and to a lesser extent bound tightly to SHBG (~44%). Only a very small fraction of about 1 to 2% is unbound, or "free," and thus biologically active and able to enter a cell and activate its receptor. SHBG inhibits the function of these hormones. Thus, bioavailability of sex hormones is influenced by the level of SHBG.
In my untrained opinion it would be easier to interpret testosterone levels if they measured Free Testosterone. But instead they measure Total Testosterone and the SHBG and albumin it might be attached to. It would be bad news (I think) if you had low testosterone, high SHBG and high albumin. But given that you have bottom of range testosterone and both Albumin and SHBG are well in range I suspect your Free Testosterone would be below range.
Apparently, the Free Androgen Index is the thing they calculate from the other results to take the place of the untested Free Testosterone level.
Sex hormone binding protein (SHBG) levels are commonly measured as a supplement to total testosterone because variations in the carrier protein may affect the concentration of testosterone in circulation. The Free Androgen Index (FAI) is calculated as the ratio of total testosterone to SHBG and has proved a useful indicator of abnormal androgen status in conditions such as polycycstic ovary syndrome and hirsutism. This is particularly useful when the total testosterone concentration is normal but the SHBG is low, resulting in an elevated concentration of non-protein bound testosterone. FAI is only reported in female patients.
In your shoes, if testosterone treatment was offered I would be prepared to try it for a few weeks or months as an experiment. But unfortunately your results are all in range - although just barely in the case of Testosterone - so I have no idea whether you'll be offered testosterone treatment.
Just for future reference, you should keep a link handy to the "Endocrine Bible". It describes every test that an endocrinology department in a hospital is ever likely to do :
Thank you once again humanbean, amazing as ever! I understand some of it, but not all of it, so will re-read again a few times later, but I think I get the gist of it all.The above results were my last ones from a couple of years ago. I suspect she has re-tested bloods with something similar yesterday, so will post them again when received (if I can get a printed copy, which I failed to do for my short synacthen test!).
I suspect things will have worsened as you pointed out in my cortisol saliva tests (things are gradually getting worse), I almost hope I am below range as then she might take note. It seems you can be ignored for being right at the bottom of the range, maybe the computer highlights below range for them, otherwise they're oblivious to the fact that you're scraping the barrel?!
I will take your advice and try testosterone if offered. I am prepared to try anything which the clever people on here recommend. Thank you for your assistance, I will be eternally grateful for your continued support.
I’m so sorry to hear of your experience. My one and only interaction with an endo was similarly fruitless (apparently I didn’t have anything wrong with my thyroid despite raised antibodies and above-range TSH when on Levo), but at least he wasn’t condescending. I’ve seen in your responses that you’re looking for someone else geographically close and wanted to let you know that the pandemic has resulted in many of the people on the TUK list offering zoom consultations. Not quite as satisfactory as an in-person, but it does open up the field. I hope you find someone who can help.
Thank you very much. I had wondered about that so will start digging!I’m sorry to hear of your experience, it seems most of us have a tale to tell regarding endos. I always go in with an open mind, but every time it’s the same brick wall and attitude!
I’m so sorry you were made to feel like this😢I would honestly love to invent a machine,you know like the labour stimulater that can be used on men,that could be used on the medical professionals who seem to think that we just make all this stuff up,let them live a day in our shoes.Sending you a great big hug,you’re not alone❤️❤️
Sorry to hear you had such an unpleasant and unhelpful appointment.There is more than one unpleasant /rude / arrogant endo at that hospital.I saw the ‘gentleman’ who runs the Thyroid and Metabolic Disorders Clinic some months ago. He was incredibly unpleasant and told a number of untruths to boot.
Kernow is one of the better CCGs to provide T3 however I think the endos are cutting back and if the GP is against it the endo supports the GP, not the patient.
Thank you for sharing. You aren’t the first to say this, I expect you mean Dr B? Someone else has PM me with a terrible experience. I reported mine to Lyn at Thyroid UK. She was very grateful and asked for everyone to report good and bad experiences. Her email is lyn.mynott@thyroiduk.org. She has removed my dreadful endo off their list.
Someone PM me to say Kernow (Cornwall) had the highest T3 prescriptions, and now it’s harder than ever to obtain it in Cornwall as they’ve presumably had their knuckles rapped.
Hi, yes it was the delightful DrB I saw. My experience was reported to Lyn at the time. I am not sure why they are suddenly so anti T3 now.
Certainly my surgery has zero patients in receipt of T 3 however the other two surgeries in the PCN do both have several T3 patients.
The lovely lady you saw has been rather unpopular for some time now. I know she seems to be on the ball on the diabetic front however her thyroid patients aren’t getting much satisfaction. I was told by someone to avoid her as she was refusing T3 and generally being ‘difficult’.
I thought I was fortunate to get in with DrB I soon realised it was not the case.
Oh no what a nightmare! I wish someone had reported Mrs D, I got her off Thyroid UKs list thinking she’s be good. So wish I hadn’t waisted my time and energy. Just hope my GP will allow me a second opinion. Is there anyone decent down south? Someone told me Cornwall had the highest T3 prescriptions so they were told to cut back. I’ve no idea?
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Disappointing endo visit.
Response from nhs endo - what do I do now?
Desperate plea for private endocrinologist in Leeds or Yorkshire area please
DHEA/Cortisol Ratio is Low
dio2
