I had my private endocrinologist apt, recommended by fellow thyroid sufferer. But it wasn’t great. He seemed to think that my issues were all down to oestrogen and wanted me to consider hrt. He couldn’t seem to get his head around my asking for an increase in levo from 50 to 75 and my dr suggesting t3, and kept talking about how unlikely t3 is especially on the nhs. also he really confused me talking about past blood tests and was adamant I had to have been on levo since 2020. I know I started in 2023. I really tried to get my points across but they just didn’t land. I was in there for an hour and he was very thorough in going through my past with me (although my brain fog made it very hard) but didn’t have much detailed info from my Gp, just blood tests from 2020 onwards. I had sent him my medichecks results so he also had those but kept referring back to the nhs results. I came out exhausted and just wanted to bawl my eyes out. He has written to the dr suggesting a trial of 75 levo one day, alternating with 50 the next. Will this even make a difference? I feel like I completely wasted £240 and am so frustrated and fed up.
endocrinologist apt: I had my private... - Thyroid UK
endocrinologist apt
I’m so sorry that your endo appointment was disappointing Kimmi01. It is awful when you don’t feel that you’ve been listened to.
After having a couple of bad experiences with private practitioners (not an endo, in my case), I now take someone I trust with me to new appointments, as I feel this gives me more confidence and provides a ‘back up’. I also take a list of questions/ points I wish to convey, to double check all are answered.
Have you had your oestrogen levels checked? I certainly found an overlap between hypothyroid symptoms & peri menopause- it was difficult to untangle which condition was at play.
On a positive note, I’ve found that even small adjustments in medication can make all the difference, so I really hope alternating 50/ 75mcg works for you. You could use a pill cutter and take 62.5mcg per day, rather than alternating the higher/ lower dose.
Do keep us posted on how you get on 🦋
I like that idea. I’ll do that as I think it will be easier for me to track. Thanks that’s helpful 👍
sorry Buddy195 just re-read your msg, forgot about the hrt info. I’m post menopausal but I do have difficulty with oestrogen and have issues with my body accepting it (too much hides me swollen painful breasts and belly. I’ve tried patches and gel and both react badly. So I take progesterone every day and then oestrogen pessaries twice a week. I could take them every day if I felt it necessary. I have done that before and it doesn’t seem to change anything. Perhaps I’ll ramp it up and see if that does help me. That was the advice of a gyne dr specialist a couple of years back. It has seemed to work for me 🤷♀️ Who knows😁
The arguement behind this is the ovaries adrenal and thyroid are in a loop system so each gland can compensate for the other. It was an arguement put forward in the early days of my thyroid problems. I tried it. Didn't work for me. My thyroid declined further. By then very poorly and thry started me on levothyroxine. You could try it on yop of your slightly higher dose of levo..if nothing else it will evidence that the endo needs to address your thyroid hormones..who knows it may even work....
Good private endos are very hard to find. The other option is to look for another one.
Really feel for you.
Thank you and it seems I’m not alone but I do feel much happier after reading everyone’s suggestions and responses. It’s just good to know I’m not alone in trying to get this right.
previous post shows you are very under treated
healthunlocked.com/thyroidu...
50mcg only standard starter dose
FT3: 3.4 pmol/l (Range 3.1 - 6.8) 8.11%
FT4: 15 pmol/l (Range 12 - 22) 30.00%
Very sorry your consultation was so unsatisfactory
get FULL blood tests again in another 2-3 months after being on 62.5mcg daily
Was this endocrinologist from the Thyroid U.K. recommended list?
Roughly where in U.K. are you
Thank you, I feel that! Yes he was I checked that he was - I’m in Kent and went to see [name redacted] in Tunbridge Wells. I’ll do that. Thanks for your support - it helps a lot to have people who understand.
Also noticed you are negative for thyroid antibodies
But have lichen planus (autoimmune)
It’s ALWAYS worth trying strictly gluten free diet if not already on one
Get coeliac blood test FIRST …..before cutting gluten
Many, many thyroid patients find gluten free diet gives noticeable or significant improvements
itcrumbles.com/blog/2014/10...
I do try to be gluten free, as in I am at home but not always when eating out. If I can I do, as I know gluten bloats me. I also find this with sugar and lactose too 🤷♀️
Gluten free needs to be absolutely strictly gluten free.
Read all labels
If toasting Gluten free bread …do so in a separate dedicated GF toaster
Don’t share cutting boards, separate jam etc
Each time you eat gluten it takes 2-3 months for gut to recover
And also worth trying dairy free as well in few months after being strictly gluten free
I was told by Coeliacs UK's helpline that it takes up to two years to fully heal! I was shocked. Looking back it was at least 18months.
I found it took over a year strictly GF for brain fog to improve
While I understand what is being said about gluten free - for me I have found after trying completely gluten free for three months three times and not noticing any difference - I can tolerate Rye products without any repercussions - I have Diverticulitis too so am very used to upsets! I did an allergy test some while ago and that said bakers yeast - slight sensitivity which would explain why I can eat things like Croissants with no bother. We are all so different - I do have Hashimotos too.
It took about 6 months of being completely gluten free for my gut issues to resolve, so it may be that only doing it for 3 months at a time wasn’t long enough for you to actually see the benefits.
Hi,
I saw a private endo five years ago. His bio stated that he was an expert on all aspects of the thyroid. He was recommended by seven different people from this site. He told me all my problems were due to a lack of oestrogen even though I was many years post menopause. I'd had no problems at all with the menopause. He said that was precisely why I now had problems. He prescribed several different forms of hrt as I couldn't tolerate them. When I found I could tolerate a pessary, I even asked for an increase as I was so keen to get well! He told me side affects were usual when starting hrt so I persevered. I got so hypo and lost myself in the thyroid fog completely! The consequences were terrible. I now know that the blood test results showed that my oestrogen levels were only what is expected for someone many years through the meonopause. If he was genuinely concerned about my oestrogen levels he should have ordered a more specific and expensive test!! Basically he lied to me and did not listen to me when I told him I was not absorbing the meds as I should. I asked him about thyroid resistance, (suggested by my gp and the reason for seeing him ). He ignored this - I assume because he had not heard of it. I'm sure he knew that hrt stops the absorption of thyroid meds and it's very important to closely monitor thyroid levels. He completely ignored this. I spent considerably more than you to be made much more ill!!
From my experience, it's usual for consultants to ignore private test results even if they are private themselves.
Unfortunately, there does not seem to be a solution.
Good luck
I’m so sorry you’re having so much difficulty. It’s a bit of a minefield I think trying to get our levels back to where they should be, and working out exactly what’s gone wrong where. Hope you have better luck next time. I’m going to take a lot of the advice I’ve seen here on and see if I can make a difference with that.
honestly - read Paul Robinson’s - The Thyroid Patients Manual and then buy your own T3/T3 online and nitrate up to sensible dose, it’s not expensive. Waiting for the NHS etc is a waste of years.
Try this - go to 62.5 for around 10 days then go up to 75 a day. Before you get low, phone the surgery and tell them you dropped the pills by accident in the sink when you were cleaning your teeth, so could you have a repeat prescription. They dont usually argue with this as it is not uncommon. See if you feel better and then get your higher dose on line before going back to the GP and telling him/her that you could not stand feeling so ill, here you are feeling better and would like to carry on please.
Been where you are now, and feel for you. Sending a hug.
Follow up to previous post regarding old and new results.
Latest Medichecks Results - low FT3 - Dr will refer me to NHS Endo, should I try? Do I need to up my Levo in the meantime?
endocrinologist 
Help with test results including vitamins 
sorted I think lol
