I've been hypo for 23 years. I rarely stay level for too long. October my TSH was 0.21, meds were tweaked from 125mcg mon-fri & 150 at weekends to 125mcg 7 days. January my TSH 5.05 but told stay on 125mcg for anther couple months.
As i'm sure the reason most of us are on here, you understand my frustration and exhaustion.
I'm on HRT and every 3 months that too needs tweaking. It's like i stop absorbing it and dosage needs to be upped or type of oestrogen delivery swapped out, have done gel, spray and now on patches and currently waining efficiency.
I am in desperate need of any experience and recommendation of a private endocrinologist who can help with the long standing disaster that is my hypothyroid, my imposing, imploding menopause and the plummeting dopamine drops just for good measure from ADHD. I have seen a few over the years but they've never really hit the spot. I live in North London for reference and happy to travel to anyone who can help.
Many thanks in advance for any advice.
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Princesspeach128
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I'm sure someone will be along that can private message you suggestions.
I'm rather concerned that your dose is being adjusted due to TSH levels which is never a good way to treat our condition, do you also have fT3 & 4 levels?
Yes January my ft4 was 20.1 changing from 25.4 in October. Historically it’s always one or the other that seems to be out of range. I just feel so utterly rubbish all of the time and have done for years and years.
I’m so tired of being told it’s just out of range, continue on for another couple of months and retest and invariably meds will need tweaking.
Do you have any fT3 results? This is the active hormone which is also essential to base your dosage on, if you aren't converting T4 into fT3 you are never going to find your ideal dose on T4 alone
Ooh thank you, no have checked back and no sign of ft3 testing. Honestly I was so on top of things a good few years ago for all things thyroid and would follow this forum and educated myself but life, brain fog and feeling worn down by it all has taken over.
I have never been one to wake up feeling full of the joys of spring, always feel sluggish but possibly sometimes slightly better than others but haven’t kept track and invariably I think the better I feel it’s when they adjust my meds and that’s potentially when my ft4 is too high I think.
This is what happens when your doctor doses by the TSH! They put you on the TSH seesaw and haven't a clue what or why it's happening! But, if you think about it logically, it's bound to happen because the TSH, once it gets below 1, is unreliable as a guide to thyroid status.
Unfortunately, that's they way they're educated, so there's no guarantee that a doctor will be better just because he's private. He still had the same education. It is very rare to find a doctor that knows anything about T4 or T3. So, it is essentail that you do your homework on the basics of thyroid treatment before committing yourself to any doctor, or you're likely to end up back on the seesaw again.
Yes that’s my experience all over the years. It is infact staggering that a specialist can’t help me get a handle on the fluctuating levels I keep having. I’ve googled, I’ve researched and don’t feel much the wiser in any practical ways I can change things so I’m hoping there might be some unicorn style endocrinologists out there who can shove me in the right direction.
I would say the right direction is getting your own full thyroid testing done - if you can, of course - and seeing what your FT4 and FT3 are doing. Then, you'll know what to ask for when you see an endo. You can't leave it all up to them because they're just not capable. They don't have the necessary education and knowledge. It is they that need the shove in the right direction, not you! I think you already know what the problem is: your GP!
is your hypothyroidism autoimmune, usually diagnosed by high TPO or high TG thyroid antibodies
Do you always get same brand of levothyroxine at each prescription
What vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Thank you very much for such a comprehensive listing of testing.
At the risk of sounding like a luddite, I do not actually know what type I have, got diagnosed 23 years ago. As far as I know its not hashimotos as think was tested for that.
I just take whatever my local pharmacy gives me and what they have in stock in terms of levothyroxine. I do know that brands can be flakey in efficacy but at this stage I am trying to simplify by just going down the road to get repeat script.
Sporadically take Vitamin D, other than that no supplements. I did see a nutritionist but it was so extreme all the stuff i needed to take, 3 x a day I was entirely unable to maintain it for longer than 3 months.
I have insanely high levels of Vitamin B12 after having injections of it about 15 years ago and levels never came back down. They just tell me its over the high range levels >2000.
I'm very grateful for all the options supplied and will get some research in.
I will do. I’ll get the tests done near the time when I can get to see an endocrinologist so they are up to date, just need to find someone first. Thanks again
Hit a brick wall with doctors receptionist who says I can't just order bloods. So exhausting. I've booked an appointment for 3 weeks time (soonest available). Thanks for the push.
I was diagnosed in 2020 and since then I have had a continuous adjustment to my meds; every 8 weeks.
Same as you, it was like I stopped absorbing and constantly needed a higher dose. I am now on 150mcg T4 and 30mcg T3 and have managed to stay in this dose for 12 weeks! Having just got bloods back I'm finally on a dose I can stick with.
I started HRT 4 months ago and am due an increase as my symptoms have returned.
I think I just wanted to try and reassure you that other people have struggled with the needing increases or adjustments!
Hello. That is so kind of you. Sorry to hear you’ve been going through it too. I’ve just had another menopause clinic apt and sure enough I’ve stopped absorbing and my levels are going back down again so swapping out for something else. I’m having crazy palpitations not sure which deficiency is causing them. When you say you’re on 30mcg T3 I’m not sure what that is. I’m in the UK but assuming you might not be. I really hope this works out do you and you’ve stabilised.
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