Hello everyone. Thank you for your help so far and reading other posts have been so interesting.
Is anyone else bored of doctors not listening, forgetting your previous visits, getting information wrong. Iv had 20 years of being told I don't have a thyroid problem until it's completely stopped working. I'm now on 100mg of levothyroxin but still feeling unwell. Wondering if anyone else have found alternative routes into managing their thyroid issues. I don't feel comfortable with taking this medication for the rest of my life as the only option of treatment. Are there any success stories on here of private doctors, alternative medicine, nutritionists, acupuncture? I'd love to hear stories and recommendations.
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Is anyone else bored of doctors not listening, forgetting your previous visits, getting information wrong.
Yes indeed, I imagine there are lots of us here who feel like this, and it's not just thyroid related. You don't really expect them to remember your previous visits (after all they do see a lot of patients) but they do have notes on the computer which they could read, but I've found that they don't even do that unless you prompt them to. I'm sure I, and others, could write a book on how symptoms are ignored, made light of, referrals refused and only later, after paying privately to have investigations, you find out your GP should have done something.
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I'm now on 100mg of levothyroxin but still feeling unwell.
But you've only been on Levo for about a month, it's still early days, it can take months before you feel any real improvement. You will need retesting and increases in dose every 6 weeks until you feel well, make sure that happens. Plus you have Hashimoto's which you really need to address. You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Wondering if anyone else have found alternative routes into managing their thyroid issues. I don't feel comfortable with taking this medication for the rest of my life as the only option of treatment.
There is no alternative really. You can't produce enough thyroid hormone, so it has to be provided somehow and that has to be some sort of thyroid hormone replacement - you just can't live without it. That replacement hormone needs to be either synthetic Levothyroxine or Natural Desiccated Thyroid (NDT) which actually isn't all that natural because it needs synthetic fillers/additives to make the tablets. And you need to give Levo a good few months to see if it works before considering NDT.
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Are there any success stories on here of private doctors, alternative medicine, nutritionists, acupuncture?
Private doctors - as in endocrinologists - are basically those who also work for the NHS and generally toe the NHS line, so finding one who thinks outside the box is like looking for a needle in a haystack. The only other sort of private doctor is someone like Dr Peatfield who gave up his GMC registration because his hands were tied to their way of treatment and he knew better. So Dr P can't prescribe but can advise. I know of only one other like him but her list has been closed to new patients for years.
Alternative medicine - no, you need some kind of thyroid hormone replacement.
Nutritionist - well, they can give advice diet and optimising vitamins and minerals for thyroid hormone to be able to work, but you'll still need thyroid replacement hormone.
Acupuncture - wont make hypothyroidism or Hashi's go away, it may help to some extent with symptoms maybe, but you'll still need thyroid replacement hormone.
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So really, you need to accept that thyroid replacement hormone is going to be part of your life from now on, not ideal but there it is. Plus you have to be patient and give it time for Levo to start helping you. You can do a lot to help yourself. Read and learn all you can about hypothyroidism and Hashimoto's. SlowDragon gave you some suggestions in your last thread healthunlocked.com/thyroidu...
Thank you so much. You've got the nail on the head with a lot of your points thank you for taking the time for writing such a detailed reply.
I feel like I research non stop trying to find answers and it does seem that that's the case for many if not all of us. I totally agree I need to be on the Levo for longer to feel the results. I feel like I'm going around in circles with seeing gps as my last visit I was told I have no symptoms and I'm fine but I'v been listing my symptoms for years. And apparently I'm going to stay on this dosage because I have no symptoms with yearly blood tests (this is what I meant about not remembering previous appointments) I'm going to give it a few more months hoping this will work. Gluten free diet looks promising and will likely relive a lot of the symptoms. Thank you for each point you made il re-read and look into them all
Out of all the points you made..NDT is still your best bet...there are brands available that do not have bad fillers in them..i.e. Westhroid..(realize it is available in Canada..and perhaps not in the Uk)...the fillers in all other brands are mostly cornstarch and sugar..but hey..i 'd take this any day ahead of one that does not contain T3 as well as T4.
Yes, but be prepared for your GP to not do them, they don't understand the importance of them. Also there are two types of antibodies - Thyroid Peroxidase (TPO) and Thyroglobulin (TG). Your GP may be able to do TPO but I think it's only endos who can get TG done. You can be negative for TPO and positive for TG so it's important for them both to be done.
If you can't get everything done with your GP the look at a fingerprick test to do at home (or can be done by venous blood draw) - Blue Horizon Thyroid Plus Eleven or Medichecks Thyroid Check Ultravit.
Thank you. Another nice lady sent me a link for blue horizon. I'm going to go down that route if I can't get the gp to do these tests. I feel like I have so much more knowledge now thanks to everyone on here that's helped
Free T4, Free T3, Reverse T3, Thyroid antibodies, Four Iron Labs and Saliva Adrenal Cortisol. T3 will not work if you your levels of Iron, Cortisol are not optimum.
I do have my results for the last 6 months and Iv only been tested twice from what i can see. And on one test they've looked at t3 but not on the other. I'm not sure why
Hi Alice, I'm sure there are hundreds of stories to tell. That's what happens when there is no clear solution because of so many aspects to the disease. I hope you are looking beyond the levothyroxine solution because it isn't. There are guidelines to follow as structured by Seaside Susi.
We are very unhealthy in my opinion because there are too many artificial chemicals and our bodies don't know how to manage them all and then any genetic defects will probably manifest when the body is overwhelmed. At this point I don't expect doctors to be helpful, as you need a personal, private physician who will investigate all the possibilities. That will probably end up being YOU.
But don't lose hope, there are many things you can do for yourself.
You're so right it's such a complex condition. It does seem like it's down to the individual to manage. I'm still confused as to why it seems so much goes un noted and linked in autoimmune diseases. Iv come this far researching all of this so il continue. Along with all you guys helps and advice
I don't understand that either when there is so much research that proves the points so keep looking at that Alice. My skeptical view is that there is much more profit to be made the allopathic way. The crime is that they then ignore the methods that could offer a cure or even compound the original problem as we see for those who have Graves disease. You are wise to keep searching for yourself.
I have been thinking that. I'm sure many people have suffered for years and been given all kinds of different medications when I'm sure something like a plant based diet and lifestyle changes could make a huge difference without medication. But that's never the recommended method. Luckily people like us can converse and advise and look at the bigger picture.
The NHS system.......A GP only has 10 minutes per appointment, is often basically a gate keeper sending us on to other specialists.
An endocrinologist just looks at the Endocrine system, a very large field, and more often than not, specialises in diabetes, rather than thyroid. Certainly doesn't consider gut function, vitamins and gluten intolerance
A gastroenterologist looks at some aspects of gut function, particularly endoscopy and testing for gut infections, but doesn't really consider thyroid conditions
A dietitian looks at what we eat if diagnosed with coeliac or similar, but doesn't seem to know much about gut function or the importance of vitamins and is unlikely to have heard of molecular mimicry and how it affects thyroid
Etc etc.
Many thyroid patients have done the rounds of numerous specialists, waiting months between appointments.....but no-one looks at the whole picture and joins the dots up.
What we need.....and it's coming in the future, is functional medicine. Where a medically qualified doctor has time to look in depth at the whole person, not just one aspect ......but it's very time hungry, needs masses of testing options (like Cyrex testing) and therefore VERY expensive.
It will only ever be a private funding option and at the moment there are extremely few qualified functional doctors here in the U.K.
Meanwhile there's masses of research for free on some excellent websites. For example The Thyroid Pharmacist & her brilliant Thyroid Secret video series. Plus Amy Myers and Chris Kresser to name just a few. ......all advocate the same thing with Hashimoto's........the importance of looking at diet.....especially how effective a strictly gluten free diet is for many many patients
Thank you so much! Your reply is amazing, just like the last one on my previous post. You've worded that so well and really put things in to perspective.
I'm about to look at the videos and sites you recommend.
l know just how you feel! After feeling l wd hardly survive in my 40s and getting no help, l moved and ended up by recommendation at a Bournemouth Healer who l reckon saved my life likely. l saw him weekly for a year when he worked on Pituitary and thyroid and after l saw him 3-4x year for 20 years. Sadly he was taken over 3 years ago and now l am sunk again and waiting for appointment at local major Hospital. Already been to another hospital that was useless and said l had ME. The healer was remarkable and esp good of female problems but l can not find another to match him. There must be another but finding is the problem! Pituitary Foundation Org are also very good on phone if that cd be the issue
That's such a shame you've lost a reliable healer! Iv heard of one in the Sussex area I might try to visit not sure if that's too far for you? But I can post his details if he's appropriate for these issues?! He's healed my mothers rsi. Ok il look that up thank you
When l was 23 and my usual South Ken GP away l saw another who wrote to hospital where l was working and said: convince this young girl nothing is wrong! There were no Endo Depts then. After that at least 8 GPs said nothing wrong mostly in Sussex. Another guy advised me recently that many GPs are over-worked and l think that can be so with silly Gov paperwork. l wd love to know the name of a good Healer in Sussex - where l used to live and am trying to get back to. l wd go anyway if it works. (chelenharris@yahoo.co.uk) please, Hope you get the help you need
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