Well, what can I say...I have to admit, I was a sceptic. An endocrinologist who knows about the thyroid, knows how to treat it and listens without gaslighting or judgement...it cannot be true. But let me tell you...it is. I had an appointment yesterday with an amazing endocrinologist (private...I saved up. He does also work for the NHS). He asked about my medical history, made notes and asked follow-up questions without telling me I must have mistaken the problems. He was very clear that the "normal range" wasn't normal for everyone and if there were symptoms then I needed to be further through the range. He explained about the thyroid function and how T4 and T3 works and developed a plan of action to ensure my symptoms were addressed. All this without blaming it on my being "bigger" or because I'm "getting older". I have another appointment with him in two months to see if the new dose of levothyroxine helps or if it is an absorption issue. I was on 50mcg M-F then 75mcg S-S. He has increased it to 100mcg/day.
Has anyone had experience of jumping dose this quickly. I feel I should increase gradually- any thoughts?
It's amazing really. Two weeks ago I was discharged from the NHS endocrinologist who said I didn't have any clinical evidence if underactive thyroid.
Let me be clear - I am not advocating for going privately but if you have seen multiple NHS doctors who are not listening and gaslighting you there are other options. I have been unable to work and registered disabled for nearly two years and in pain for 6 years. I have seen 5 endocrinologists, bariatric consultants and refused help from pain and rheumatology departments. I am about to have my home repossessed so I was at my wits end.
Keep believing and trusting your experiences. I am so grateful for this community who have such a massive bank of knowledge and expertise. What everyone is doing is literally life saving.
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Pinkisbest1
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Hi SlowDragon, I'm not sure on the brand. I'll check when I get home. I will get the GP to make sure it is branded on the prescription. Thanks. I had the last dose about 8 hours before the test and the test was at around 1pm as that was the only time I could get an appointment. I know it's better to do it before 9am but it isn't possible to book at that time and I have carers until 10.30am so it's not ideal. I will try to get the best appointment in time for the next blood tests. 🙏🏽
I think I'll see how I get on with jumping to 100mcg straight away. I was debating going gradually as you describe but I want to get the full effect in time for my next appointment and he has given me his email to contact him if there are problems.
I have Almus for the 50mcg and Crescent for the 12.5mcg. I haven't had any side effects from either but they could be absorbing differently I guess. I will have to get the GP to specify on my prescription so I definitely get the same brands moving forward. Thanks for the tip.
When I went from 50 to 100 - I took titration periods from 50 to 62.5, then 62.5 to 75, then to 87.5 then 100. And ultimately 112. The closer I got the more concerned I was about overshooting.
I would take a week or two at least as I increased those 12.5 increments, and sometimes would take the whole 6-8 weeks on it. If I took a couple weeks in the 12.5 and then increased the other 12.5, I’d always stack a full 6-8 weeks or more on a stable dose before testing.
I found the 50-100 period tough - as in almost all cases we are so under-replaced and digging out of lots of symptoms.
Some people do fine with faster/higher jumps. I’ve never tried! Small changes were volatile enough for me.
Aug ‘22 diagnosed and one year left on 50 mcgs Levo feeling horrible and hopeless.
Aug ‘23 found this forum and got on track of the right blood tests and a low and slow titration …
Sometime fall 2024 I started to feel “better”! And the more months going, I actually feel pretty “normal”. It’s still a tightrope - one bad night sleep and I hardly recover! Oh and perimenopause kicked up a few months ago, so now there’s another variable to conquer!
But generally, other than it being a delicate balance … I’m “ok.” Last frontier is to increase the intensity of my physical exercise! A luxury really : )
I'm glad you're on the right road. 😎 I can't wait until I'm recovered enough to do every day things. I love hearing that you are up to doing exercise. I used to do loads and I am supposed to be at the gym to rehab my leg following surgery. I can't wait to get back to it.This forum is fantastic. I too have had so much help from previous posts, replies and to DMs. It's great that so many people can get help this way. I wish there was a way to tell more people as I only found it by mistake while I was Googling my symptoms. I almost didn't join as I had never been on a forum before and was wary of what it involved. I bet there are loads of people who could use the expertise and experience of the members.
Ah yes… never would I ever tell people to take health advice from the internet lol! But this one is so different. Life saving. Proof is in it all working as promised.
By the way - I can put myself in your shoes, wanting to jump to 100.
Which might totally be the right choice for you.
But I pause… since the reason you’re leaning towards that is the date of your next appointment.
Could you just calculate the right titration #s and how long you want to take… and reschedule your appointment?
Since you are headed from 50 to 100 anyway, I’d think about what you want to make the right choices for your own health, and not force it into an appointment schedule.
I did, and many do (not all), find those 6-8 week periods pretty crazy-making… many time I was ready to give up and change doses mid-titration. The lower the change, the less nutty I got. The long I waited as I got closer to 100, I felt so much calmer. I wonder what would have happened if I’d skipped from 50 to 100.
If you decide too I’ll be interested to see how it feels!
It's really helpful to hear your experiences. I'm so conflicted at the moment. I'm on 50mcg 3 days a week and 62.5mcg 4 days a week. I had 100mcg today but I can't decide what to do tomorrow and onwards. I have had no bad effects today which is good as I am very reactive to all medications. I seem to be okay with levothyroxine. Maybe because it is a hormone and I need it. With everything else I have very bad reactions within a few minutes. On the other hand I don't want to push my luck. 🤯 I can of course just change the appointment so there's that!?
I think I'm going to take 100mcg again tomorrow and see how I feel. 🤞🏼🙏🏽
Levothyroxine has a 7 day half life. That’s why we need to take 6-8 weeks on a stable dose.
You won’t feel anything in a couple days, and likely will take 1-2 weeks into the change before you feel anything at all.
If you stay on the 100 daily…. Commit to staying on the 100 daily for the full 6 weeks.
Many do just fine with big jumps. If by weeks 3-4-5 you start to feel worse… post again here before you do anything rash like changing your dose. Speaking from experience - it happened to me at week 5 most times.
Thanks, that's really helpful. I'll stick to the 100mcg for now then. I'm just grateful that I didn't have an immediate reaction as I usually do with medication. I am hyper-allergic to things usually.
How refreshing is it to go private and get a consultant who listens! Can you pm me with the area he is in please as I'm saving up to try to see one. I can't get my Endo (NHS) to even consider a T3 private prescription! Unless I wait on a very long list with another hospital I can't buy T3. I've spoken to Roseway labs and unless a prescription is endorsed by a clinician I can't get it for my Atrophied Thyroid.
From my experience, I have to start very slowly with meds and build up. I was started initially on 100mg and exerpienced side effects. Reduced to 50mg. Still side effects, reduced to 25mg (which is what the information says you should do). Then over several years have increased, now to 75 mg. Still not on 100mg! But everyone is different and to how you react.
Same here. Started 100mcg and got ischemic irregularity and still felt ill on 50mcg. 25mcg Levo with 20mcg T3 for 6 months then slowly upped to 50mcg Levo and 20mcg Liothyronine now one year later. Still got some underactive thyroid symptoms so still some way to go.
That's so interesting. I'm so glad that you are making progress. I can't wait until I start ti feel better.
The doctor I saw warned me of getting palpitations and that if they got too bad to contact him. When I go back he is going to see if I am absorbing the T4 properly and if it is converting to T3. If not he's going to add T3 to the mix. I find it so amazing how many different routes there are with thyroid treatments. I know everyone is different but it seems more pronounced with the thyroid. I haven't had any side effects on 50mcg and 62.5mcg of levothyroxine at all so I am praying that my increased dose of 100mcg.
Thank you for sharing your experiences SoohieBella. The more I hear from everyone, the more amazed I am at the differences that we all experience with treatments. I have always been led to believe that I was the exception as I always have problems with medications and supplements but it is clear that everyone is having to find their own path. Is the dose you're on now enough to sort out the symptoms or do you need more? The guidelines say 1.6mcg per 1 kg of body weight but that means I would need to be in over 200mcg which seems like a ridiculously high dose. 🤪
I really need to see this endo my gp is letting me down they're a joke I posted on here as I'm struggling I'm current on 100mcg by accord and 12.5mcg by crescent this brand was added 2 weeks ago. My body started to cramp all over scary stopped the 12.5 crescent brand the cramps stopped. My gp still hasn't got back to me. Please can you forward the details I'll travel anywhere to see this person as I'm desperate. I'm in Leeds been waiting to see the endo team a year
Same here - it's a 56 week wait to have a follow up Endo appointment. I've been increasing my dose of Levo on my own initiative and informing Endo of symptoms and asking for blood test forms for Ft3 and Ft4. Luckily I have a route to contact him as I had RAI last year and he prescribed T3.
It is extraordinary when you find an endo who listens and understands. I am so glad you did.The one I see decided to learn more about hypothyroidism when he observed women repeatedly coming to see his NHS colleagues but never seeming to feel better. He decided to investigate - a not surprising response from someone whose first degree was in engineering and trained to investigate and question.
It's criminal that others are not so professional.
Last year I went to a lecture given by a woman involved in a government study of women's health. I waited for her to mention thyroidism. She did not. By chance, she joined a group I was with after the lecture. I asked why she had not included thyroidism in the study. She was stunned. Finally she stuttered 'we could not include everything'.
Just as well you were there to point out the biggest missed opportunity in the field of medicine. I really don't know what is taught in medical degrees and in endocrinology training but it seems amazing that the most important endocrine system isn't even mentioned 🤦🏽♀️
It's great that your endocrinologist is wanting to learn... could you get him to do a tour around the UK to share his findings?!? I am just so relieved I was able to get tonsee my one. He was recommended by someone on this forum so if we all keep sharing we can all make a difference. 🤗
You were SO fortunate to find a sympathetic and knowledgeable endocrinologist! I have seen three, privately, and they seemed to know very little. They were obsessed with TSH, despite my low T4 and T3 readings. Would you please DM the name of your endocrinologist and their location?
Isn’t it great when someone actually listens to what you say. I was lucky that the first consultant I saw could see from my blood results that I had been under medicated for at least 10 years. I had gone with lots of paperwork & he said you don’t need any of that it’s all here on a graph on his screen. I then started the journey of increasing my Thyroxine dose. At first it was wonderful to feel so much better but slowly plateaued & T3 was added. Initially fantastic response but now my levels have dropped & every 6/8 weeks we are changing doses. I’m not there yet. Just as others have said we are all different & need different tweaks here & there. Every time I’ve increased my dose I get palpitations shakiness etc so lower dose again. Personally I would increase slowly after my own experience but it’s up to you. x
Thank you for sharing your journey. It's so great that you have found someone who is helping. I wish everyone could find someone near to them and who was part of the NHS so it was free.
It's so interesting that they had the blood results but still didn't give you correct dose. How annoying after all those years. I hope you get the correct balance soon. It's so tiring having to argue and fight just to get the right help.
It's totally exhausting arguing to get the right help, you're right. It really shouldn't be so hard. I argued repeatedly with my GP but they insisted my TSH was within range. I even shouted at one to go back to medical school I was so angry. The stupid thing is that I knew nothing about thyroids until I found this wonderful group. I stupidly thought you take thyroxine & it's all fine. I only got a referral into hospital as I was so unwell with exhaustion for 3 years & I took my blood results in with me since lockdown when my GP's had stopped my 3 monthly B12. All my Vitamins had halved then halved again the following year & I didn't understand why. the consultant I saw asked my GP to refer me to Endocrine but they refused twice. They eventually agreed. As soon as I saw an Endocrinologist for the first time he said you have been undermedicated all these years. After he wrote his clinic letter to our GP's I noticed on my NHS app that my GP had added that I preferred to have my TSH level higher just to cover himself!!!
That's been my experience with a private endocrinologist who specialists in pituitary anfd thyroid function too. Someone who listens and patiently explains everything as well as, giving me a plan going forward. So glad you're being heard.
Hi Suecarrollhom,I'm glad you've found a good endocrinologist too!! It makes such a difference and I am still in shock!! Yes, knowledge of the full endocrine system is definitely helpful. It is such a worry that all of the doctors I have seen up until this new one have no idea that there are primary, secondary and tertiary thyroid conditions that all need different investigations and treatments. Thank goodness there are some that do!!
I am so sorry you have been so ill and mistreated/diagnosed. But really pleased to hear you have finally had such success with an understanding and informed consultant. I’m sure you’ll soon feel more like your old self. Very best wishes😄😃
Thank you so much for your kind message. It has been a very long quest but I genuinely feel like I am on the road to recovery. I still have a way to go with managing the treatment but as you say, having an informed and understanding consultant is definitely the key.
I can't wait to be back to my old self - I have been unable to work and have carers to help me wash and dress but I can start to see the light at the end of the tunnel now. I don't expect it to be quick but every journey starts with a step and I feel like I've done about 1000 with finding a good endocrinologist.
I hope you are getting the help you need too. Thank you again for your message and well wishes. 🤗
It is appalling that you are in such dire straights due solely to medical ignorance. So many suffer in that way. My one trip to an Endocrinologist ended after I followed (stupidly, I know) his request for me to go cold turkey for 6 weeks - the result was TSH of 65.2 !! Needless to say I will never go anywhere this arrogant and ignorant person again. So, once again I wish you all the very best. If you also follow the advice of the well-informed people on this site I am sure you will see a big improvement. I wish you the very best of health in the future.
Thank you so much Kazania. Yes, the people on this forum are amazing. I find it so depressing though knowing how many people like yourself who have been so let down my countless medical practitioners who are meant to help. Thank goodness there are some good ones. 🌞
good morning I’m so pleased you are being listened to and receiving appropriate treatment!! Could you DM the details as I’m hoping to book a private consultation?
very interesting post, could you pM the name and whereabouts of your private Endo. I use a private one at the moment but am planning to move so looking for a new one. Thanks
such a hopeful and inspiring story! Please add me to the growing list of people who would love to know who this doctor is and where he is located. Many thanks and best wishes for your journey to health.
I am so glad that so many people have read my post. I hope I have sent a pm to everyone that has asked. I wish everyone luck and strength to carry on with the quest to get the help they deserve. Don't give up. I first had goiter at 8 years old and was told it was anaemia. Now, at nearly 52, I am finally getting the help I need. I am not saying it will take you over 40 years to get the help but persistence pays off in the end. 💪🏽🤗
Hi McDuff666,Thank you for your message. I appreciate your comments. Unfortunately, the NHS treatment options are restricted by NICE and by local spending restrictions. In my area I know they are not allowed to prescribe T3 regardless of their desire to as in the NICE guidelines it says there is not enough peer reviewed research to support its use. I am shining a light on my experience because I know how desperate I have felt with being gaslit and dismissed. I now have a chance to get my life back where as before I was doomed to being disabled and probably homeless. I'm sure going privately is not available to everyone and the NHS should be ashamed of the number of people it is letting down but I need my life back and I am not going to spend my life fighting the whole of the NHS while my quality of life goes down the drain. Not all private doctors are good or indeed better than the NHS ones and lots of them work for both but what I do know is that thanks to a recommendation from someone else on this forum, I now have the chance to live a full life for a few pounds. When I get better, I will be able to work again so the expense is minimal in the scheme of things.
I wish you the best on your quest for good health.
I'm so pleased that you have found an Endo who is willing to help. So many people, myself included, have had the same problems as you with the NHS, and it does make you wonder, doesn't it?
I have genetic thyroid problems. It isn't clear yet whether or not it is primary, secondary or tertiary. Treating the symptoms IS the point provided you are treating them correctly. I have spent years with doctors telling me it is because I'm fat or because I don't exercise when I was training 15 hours a week, "I'm just unlucky".blah, blah blah! I have known for a long time that it was underactive thyroid. In the meantime doctors have been treating each individual symptom in isolation...that is the problem. You seem to be very invested in solving the world's problems and that is great but being negative about getting help isn't helping others in their everyday lives. I don't care about the universal conspiracy to make everything toxic. Nor do I believe that that is the case. What I do know is that you only live once and having the best health you can it what matters. Fighting global battles is not what matters to the majority of people and detracting from positive experiences doesn't make anything better. That doesn't mean that I am uninformed or uncaring. It's about being realistic and focusing on the little rays of sunshine that bring joy.
I'm invested in solving thyroid problems/health problems and to do that one must understand the wider context. I completely agree that health is important - that was exactly what my posts were about
I don't know how, if one has not been tested for toxins, that one could conclude that they have no effect on one's thyroid function. I was saying something about ROOT CAUSES that I thought could be of use.
oh dear mcduff ... accusing someone who was just trying to enjoy the pleasure of being heard and feeling hopeful, of 'being an endocrinologist'.... is a bit below the belt.
have you nothing better to do ? ( i have self censored the rest of this reply particularly the tin foil hat reference , on the grounds that it was unnecessary )
accusing someone … of 'being an endocrinologist'.... is a bit below the belt.
tatty, I am endlessly LOL’ing. Only we on this forum would understand that accusing someone of being an endocrinologist is indeed below the belt 🤣🤣🤣🤣🤣🤣
IYKYK!!!!!!!
Pinkisbest1 I also saw your endo is open to t3. I will also share one more anecdote - I was put on t3 way to early and wish my doctor had gotten my Levo dose up first and gave it a chance to convert. I’ll never know. When working up towards 50-75 or even 100 you can usually hit 6 weeks and increase (checking blood tests of course). But the closer you get to full replacement - time is your friend. On every dose change the higher I got, I’ve given it 8-9 or even 10 weeks to settle. I found big differences the longer I waited.
Thank you so much FallingInRevese, I am very interested by what you say about being on T3 too soon. I will bear that in mind with treatment going forward. I am just on level at the moment and I'm a long way from getting that at the right level but I'm so glad that you let me know about your experience so I can be on the lookout when I have the option. 😃
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Thinking of going Private for eyes
Recommendation request for 2nd opinion and interpretation of results
Hypo or Hyper I'm so confused 
Endo letter regarding t3 assessment
