Hello everyone, I'm Paul 47 year old non smoking ,non drinking man in Bangor north wales. I was diagnosed with an underactive thyroid around 12 years ago ( my mam has suffered with the same virtually all her life and my older sister has rheinards syndrome) so it's in the family.
I started on thyroxine from the offset and never really felt significantly better and after a number of years of this and increased doses from the original 25mcg to my now 175mcg daily I noticed an uncomfortable feeling when I swallowed ,I saw my gp and was referred for an ultrasound in Bangor and they told me I had a number of cysts on my thyroid that weren't over 5mm so don't be concerned ,I wasn't happy with that and had an appointment in Manchester Royal and the outcome was to try T3 with my thyroxine which I did and still do 5mcg daily I think it had a placebo effect on me that there was some recognition but overall I'm still struggling to get up everyday , mind foggyness , feeling really down and sleep during the day on a washing line,feel really weak and aching limbs are normal to me now. My gp will say its work etc as I'm a butcher but I never use to feel like this and I can see on their face they are in a hurry to see next patient or are not too familiar with my condition .
In Feb 2015 I had to take time off work as I felt absolutely terrible ,saw my gp and had an appointment in our local hospital in Bangor ,I saw a doctor Wilton who listened to me and read my notes and proceeded to tell me he was retired and brought back in as the department couldn't cope without him or I'd end up seeing an ENT specialist !!! He looked up from my notes and said " you've got bloody hashimotos disease "and it was picked in my visit to manchester which had to be around 6 years ago or more when they took bloods and results weren't sent to my gp which is unbelievable ,I asked what to do and he said I should go gluten free and I would have another appointment in 3 months . On my return in sept 2015 they told me to stay gluten free and they would see me this year , I have been chasing an appointment for months now and was informed yesterday another 20 weeks . I can't wait that long and sadly have very little confidence to continue in this way as I don't know are my cysts ok ? Are my meds ok or should I be doing or avoiding anything? I feel so terrible these last few months that I really just want to sit at home and pack in my job which is a family business and I'm shattered whereas I used to enjoy my job ,once home I can't be bothered doing a thing as I sleep within minutes of getting home and even worse once I eat ,even driving is a problem now and my family just accept it but it's not right I'm sure of it that I can or should feel better than this. I've seen local homeopathy and nutritionists to find out what to eat etc and avoid but they don't have my bloods etc , I'm really really worried about myself and think I should travel somewhere in the uk to see a specialist to help me otherwise I can see myself crashing and being a wreck and I'm fit for my age ie. 5'11 and 10st 5lbs haven't been able to excercise for quite some time as last time I did I felt like I'd been hit by a truck after a light jog.
Sorry to go on but I wanted to try and give a full story in hope that someone can help me, thanks in advance .
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Paul1108
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There is no treatment for autoimmune disease like Hashimoto's. Treatment is for the hypothyroidism Hashimoto's eventually causes. 100% gluten-free diet does improve symptoms and reduce antibodies for a lot of patients but isn't successful for everyone.
Your ongoing symptoms suggest to me that you are under medicated. Ask your GP receptionist for your recent thyroid results and ranges (figures in brackets after results) and post them in a new question so members can advise whether you are optimally medicated.
Hashimoto's and hypothyroid patients are often low or deficient in ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Ask your GP to test and post the results and ranges in a new question for advice.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Hi Paul, welcome to the forum. A very dense post, but I’ll try to answer point by point.
First of all, your dose isn’t that high, and may not be high enough for you. 5 mcg T3, whilst in no way have a ‘placebo’ effect, it a miniscule dose, and could probably do with being increased. BUT without seeing your labs, it is impossible to comment further on your dose. Have you never had a print-out of your results? It’s true that doctors don’t exactly throw them at you – I think they’d rather you didn’t know, if the truth be told. You have to ask for them. But, it is your legal right to have a copy of your results under the Data Protection Act of 1998. Ring the receptionist and ask. You should get into the habit of asking for a print-out every single time you have a blood test, and keep them for you own personal records. You need to know exactly what was tested, and what the results were. Your doctor might not be testing the right things. When did you last have a blood test? What time of day did you have it? Had you eaten beforehand? All these details count.
You have to remember that doctors know very, very little about thyroid, and the amount they can help is limited. So, you have to take charge of your own health. Learn as much as you can. Read on here, read the links, progress to reading books and articles. And, the first step to taking the control is getting your lab test results, and learning to understand them. We can help you, there, if you post them on here, with the ranges.
The doctor you saw in Bangor was right about the gluten-free. Have you found that helped? You could also try going dairy-free and sugar-free, to see if they help. There isn’t really any treatment for Hashi’s, it’s an autoimmune disease, and doctors don’t understand autoimmune diseases. So, your treatment wouldn’t have changed, as far as they were concerned, even if the hospital had sent the results to your doctor. But, you could try taking selenium to bring the antibodies down.
Don’t worry too much about your nodules. They grow very, very slowly, if they grow at all. It’s only if they start impeding your breathing that you should do anything about them.
I’m sure you could feel better than you do, but, as I said, doctors don’t have a clear idea how to treat people. What did the homeopath and the nutritionist say to you? Were they able to give you any useful advice? The only thing I know that you definitely should not be eating is unfermented soy. For the rest, you eat what you like and what likes you. If you have a bad reaction to something, don’t eat it anymore. That’s all. There is not food that is magically going to make you better, but you do need plenty of protein and plenty of good fat.
You do need plenty of rest, so don’t feel guilty about sleeping a lot, or not exercising. Exercise could have a negative effect on you at the moment, so give it a miss for now. Just gentle walking/swimming/yoga.
So, as you’ve probably gathered, the bottom line is : get those results and post them here – with the ranges – and well surely be able to suggest ways in which you can feel better. Take heart, all is not lost!
Hello Paul1108 I'm a bit further down than you, on the north west Wales coast in the Cardigan Bay area. I am so glad you actually had a positive experience with Dr W, I saw him many years ago and found him to be an absolute pig but I was on natural dessicated thyroid at the time and it seemed that trying to help myself and saying Levo didn't work for me was a step too far for him so I had to endure his wrath. Not for long though, I ditched him when he kept me so ill I couldn't function, my GP agreed with me and started to help. But I digress!
So, do you have your thyroid results? Can you post them with their reference ranges please, along with what meds you take, then members can comment. My guess is you could well be undermedicated.
Did you take his advice and go gluten free? It's actually refreshing to find a doctor who knows about this and advises their patients. Also, supplementing selenium helps. Both gluten free and selenium help reduce the antibody attacks on your thyroid.
Have you done any reading about Hashi's? If not here are some links for you:
As for the additional 20 week wait, can you ask your GP to write and say it is urgent? Maybe that will help get a quicker appointment, or ring his secretary and say you're willing to take a cancellation at short notice. I don't know of anyone you could see privately but you could email louise.warvill@thyroiduk.org.uk and as her for the list of thyroid friendly doctors who see patients privately. If there is one you can travel to then ask on the forum if anyone has any experience.
You're very lucky to get T3, it's very difficult to get this prescribed and some people are now having their prescriptions stopped because of the cost to the NHS. See if you can stockpile it while you've got it on prescription, it may come in handy in the future
It might be an idea to get a full picture of what's going on. We usually advice an at home Blue Horizon Thyroid Plus Eleven fingerprick test which covers all the thyroid tests, including antibodies, plus vitamins and minerals - B12, Vit D, Ferritin and Folate. All those need to be at their optimal levels for thyroid hormone to do their job properly. You could very well be deficient in some, or all of them. You could ask your GP but if he wont do it here's the link bluehorizonmedicals.co.uk/T...
So don't despair. Post your current results if you have them. If not pop along to your surgery and ask for a print out. You are legally entitled to them under the Data Protection Act but you may be charged a small amount for the printing. Let's see what's happening there for now, and maybe set the wheels in motion for those vitamin and mineral tests or Thyroid Plus Eleven.
PS, sorry, just seen you take 175mcg Levo plus 5mcg T3.
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